Drew's View

Change of Address

2009-08-30T01:10:00.001-07:00

Nothing earth shattering, just something I've been meaning to do for a while.

The URL for this blog originated years ago and sprung from an old email account I had in college. When I first created the blog it was purely for personal enjoyment and nothing I really planned on taking seriously. That changed in February 2007, and the direction and tone of this blog was never the same.

The site name never really jived with the content: to the uninformed - which, I suppose, was everyone but me! - "andyman-sdg" was fairly nonsensical in relation to the story that was unfolding here. "Andyman" was a nickname I had in high school and "sdg" stood for Soli Deo Gloria, Latin for "the worship of God only".

Many times in the past few months I've wondered about changing the URL to something more fitting, but I alway put it off because I thought it would be too much work. Turns out it isn't :)

So, to the point of it all: from today forward I will be ceasing to tell Josiah's story (and our story) at this current URL and will be continuing at the following:

josiahs-journey.blogspot.com

Please make the switch if you link to this site or have it bookmarked on your computer. All the previous posts, pictures, and comments related to Josiah's story have been transferred over, and aside from a few colour and formatting tweaks the blog is identical.

Gratefully.
- Andrew & Marie

Josiah's Memorial - Bulletin

2009-08-29T12:47:00.001-07:00

Here is a scan of the bulletin that was printed for Josiah's Memorial.

(front and back cover, front page on the right)

(inside pages)

- Andrew & Marie

Josiah - Desktop Collage Wallpaper

2009-08-27T14:29:00.000-07:00

I've been playing around with some photos and created a collage of Josiah pics which looks pretty good as a desktop background. You can download the image as well if you'd like: click the image to view it 'big' and then right-click it to save the file and/or set it as your desktop image. It lines up well on my laptop, but who knows how it looks on bigger screens ...

FYI, the tree clipart was a free image that I inverted (flipped the contrast, I think) and the background (at least that what you can see of it) I'm pretty sure is this guy's work but I can't remember the site I originally downloaded it from.

I'm a PC and I'm 28 ;)
- Andrew & Marie

Josiah's Life Story

2009-08-25T20:24:00.000-07:00

Marie and I held for ourselves the privilege of writing out and sharing Josiah's Life Story at his memorial. Despite the emotions and busy-ness of the time, putting our thoughts to paper wasn't as hard as I thought it would be, and getting up to share seemed at times even easier. I suppose it was because the last 2 1/2 years brought so many opportunities to share about our son, that doing so again on such a grand scale seemed so very natural.

I have posted the full transcript of Josiah's Life Story below as it was read at his memorial. It's long, but considering how much as been said and written about our precious boy I suppose that it could have been much longer.

=================================

INTRO - Andrew: Josiah’s story isn’t about medical facts or beating the odds. It is about a son who was supported by the Lord and left a significant impact on everyone he met. Our words, emotions, and stories we share here today is not the complete testament of our son’s life because his story is etched on all of our hearts. It is for this reason, though we’re standing up here today, that Josiah’s life story will only really be heard later this evening when others get to share how knowing Josiah changed their lives. As one who has journalled his life since the beginning, this is only a small and incomplete account of parents who love God and loved the son He gave them through and inspite of the challenges. The legacy and impact he leaves behind is much like the trees he so adored: it will grow, spread, and multiply as his story continues to shape our own.

Marie: Our son, Josiah Haak. Ohhh, how we miss him.

Being Pregnant was such a Joy. Josiah was such a monkey inside my tummy. He constantly let me know he was there by going on carnival rides almost every hour. The umbilical cord was a complete spiral when it came out. His Favorite time of day was, of course as all us women know, when we are trying to sleep. However I was able to sleep through it somehow.

I continued life exactly the way it was. I was still active, did a triathalon, tought aquafit, swimming lessons, and supervised 32 staff. This was how I thought life was always going to be. I would take my child to all of these things after he turned 1.

Marie: When Josiah decided it was time to see this world we were completely caught off guard. I was only 35 weeks along.

It was a Thursday night and I had done my last day on the pool deck because it was that day I realized I was useless. We finished Junior youth and I tried to sleep. I thought it was bad cramps but Josiah knew otherwise.

Present at the birth were, Andrew, Kelly and Alex Shaw, Dr Cindy Shaw and a slew of professionals I did not know.

Josiah was born 1616 on the 16th of February. Just like the meaning of Josiah’s name he was immediate supported By God. I thought originally that he was going to be a girl because I heard distinctly that the name was to be Isabella when I was first pregnant. But I soon realized that it was the meaning of Isabella that God wanted for us to know. He was to be consecrated to God.

Andrew: One of the things that was evident right from the beginning were the signs of God at work. They were more than just coincidence strung together over the last 2 ½ years, but vivid expressions of God’s purpose and provision despite the challenging and chaotic journey it became. We had settled on Josiah’s name just five days before. It was pretty evident within minutes that we’d be leaning on God’s promises we found in Josiah’s name. While Marie was still a loopy from her first drug experience, we were dealing with the sober reality that Josiah may only have minutes to live. Josiah came into the world not breathing, but there were other alarming indicators that went beyond a boy trying to his catch his breath. Within hours he was intubated and flown to BCCH and thus began a long and difficult journey as we lived as a family for 15 months in the hospital.

Marie: The Lord started to support us through family and friends which I just realized as I was writing this that the name of Josiah was to apply to our family not just to him. Josiah was such a joy to us. We did not care how long the time would be we wanted to love him whole heartedly. He showed so much character during his frist few months. Josiah Endured 14 intubations fighting with nurses and respiratory therapists to cause some of them. This was only in the first 2 and an half months of his life. He had Eye exams, NG tubes, blood work every day, and a loud bright noisy room. He Chose to keep fighting and ne that God had more for him even at that young age. His eyes were full of life. He was finally Trached on April 30th and G-tubed a week later.

Andrew: One of the most lasting impressions of our time in the NICU was the fear of going to sleep. There were many nights we were woken with the news that Josiah almost died because he self-extubated. The NICU tested our faith and our family, and it established the foundation upon which the rest of our journey would continue.

Marie: Josiah soon started awful spells where he would not being able to breath. He would turn blue and black and we would just have to wait until he passed out. Then he was moved to the ICU so that they could take better care of him. It was a strange beginning of normal family life. We had our nurses and Doctors RT’s and bed mates. He became friends with children who came and went. His life was one that touched people who came in and went home with love and life. It was also one that gave hope to families who were just beginning there long journeys in hospital life. The accomplishments that he started to make were amazing and this also was a sign of Gods working miracles in Josiah’s life.

Andrew: Early in the NICU we were given the option of palliative care. On paper, Josiah had almost zero chance of survival let alone quality of life. If he was to make it beyond infancy, his best hope was to be a vegetable in a wheelchair. As parents, this was difficult to face but we decided that we do everything we could to give our son a chance and leave the rest up to God. Nevermind all the weird odds ‘n ends that challenged him, his brain alone was so highly underdeveloped that his doctor was shocked when he saw Josiah wiggle a finger. He wasn’t supposed to be able to do that, and he continued to amaze the staff in his own special way.

Marie: When Josiah passed his swallowing study it was so amazing. I was running and jumping down the hall to Dr Bob and he was a little scared. But I will never forget his response. How did they intubate him anyway? Josiahs Air way was so abnormal that Dr. Bob recognized that is was a miracle that they even could. Especially without leaving any scar tissue, which could have taken Josiahs life on its own. Wow a miracle.

Marie: Josiah survived severe seizures, aspiration pneumonia, and some of the worst blue spells they had ever seen. He was a fighter and God had so much purpose for his life. He had cronic ear infections and we would not know that he had one until we saw it, there were goobers in his ear or he had seizures because of the pain. He would just deal with it and his body would complain before he did. There was only one time that we needed to take extra action for extreme irritation. Wow!!! On top of that Josiah had two drug overdoses and God took care of him in both, when both should have been fatal.

Marie: When we decided that there was no more the hospital could do that we could not do at home we started making plans. The community had a hard time thinking that it was safe but we finally got the go ahead. We had 6 respite set up at the time and the nurses came later.
Marie: Being home was so fun, Josiah and I did everything together. He had a urge in his eyes that he wanted to enjoy life and so he did. Ya know? He has never woken up grumpy. He was always so excited to see you when he woke up. Even if it was 3 or 4 in the morning. He was just glad to be awake and with whoever was there. He had such a way of making each person know that he cared about them. I truly believe that he had a unique relationship with God and understood what it meant to love like Christ. That is what he would do with his eyes and his touch. This was his Job and he did it so well.

Marie: I was such a blessed mom, Josiah liked to cuddle and boy did we cuddle. He wanted to be independent and play by himself but he certainly wanted to be cuddled. Oh how Ioved it. With all the people that loved my son I had to let him go alot. It was hard as a mom to have to share my son so much. I really struggled at the beginning when I got home. I wanted him all to myself. Then I remember when I heard that I need to let Josiah go and do his job. He was not mine alone but Gods and he needed to be released to do what was planned for his life. He was unique in Gods design. He was a community child right from the beginning. The love that was given to him was astounding.

Andrew: Our home was a different home: medical bits like wrappers and instill ends littered the place; expensive equipment was found in every corner; our house beeped and whooshed and lit up just like an ICU hospital. But Josiah grew, excelled, and succeeded in our home. Playing with his go-to toys; laughing with his favourite stories; drinking his bottles and then taking the next step in eating baby food everyday; he got bigger and stronger, and he became confident with his body and learned how to balance, pull, and push. He understood sign language, recognized faces despite not seeing them for months, and loved it when family would talk to him on the phone.

Andrew: Josiah seizures got under controlled and he went down from 5 meds to 2. He was no longer dependant on diuretics to combat his water retention and went from needing 4 meds to needing none at all. He even got off his ventilator for the whole day, only needing it for his sleeps. It was ALL PROGRESS, sometimes fast sometimes slow but always forward and we were so blessed. He was the most content child I have ever seen, warm to everyone he met, never gave up on trying something he was determined to do, and always quick to forgive.

Marie: When Josiah and I would walk together we would always meet someone new at the park, zoo or mall. His being would just cause children and adults alike to walk up to us. We did not even have to look for them. He drew people to him without doing a thing. This allowed for his story and the proclamation of the glory of God to be shared through his life. He was a preacher left right and centre. It runs in the family ya know. We loved talking about our son. God told me in the NICU that Josiah was going to be a missionary in Africa and a day later the red spot on our blog map showed a spot in Africa that had found his story.

Marie: I was so proud of who he was. I prayed every night a thank you for who he was. He did not have to do anything, he just had to be free to do the will of God in his life and I needed to let that happen. That is what I hope we realize about our children is who they are is good. Not what they do or how they do things but for who they are. They are perfectly and wonderfully made no matter what problems they have or defects they have.I remember always saying to Josiah all the time. You are so cute, can I keep you forever.

I do not have him for a period of time and it hurts more than words can describe. This is the first time he has done something without me and I really hate it. But I know that God is good and I need to hold onto that. I do not want to be bitter and only God can prevent this in me.
When Josiah greets me in heaven I hope that he has all his outward beauties. His hump, big head, squished nose, short arms, rolls, moles, ears, jo haak and 6 toes. He was [erfectly and wonderfully made and God does not make mistakes. I believe that he will just not have limitations in heaven because what held him back on earth will be no longer. I look forward to our next big cuddle.

CLOSING - Andrew: The absence we feel today is as large as the impression he has made on hearts. And for that reason we ache and are heartbroken. Where there was once beeps of alarms and whooshes of breathing, there is only silence; where there was once a beautiful sleeping child on the screen of our monitor, there is now an empty bed. In a house that jingled and clanged with toys moving IB a mobile, there are only memories of a playful son; in a home where smiles filled every inch of his face and laughter wiggled through every part of his body, there is the sober reminder that our bodies fade and fail but our souls and legacy will live on.

Andrew: Every night when Josiah was in bed I would kiss him goodnight and say this same thing: Josiah I love you, Josiah I’m proud of you, Josiah I’m so glad you’re my son. A father has never been more proud of a son. He was perfect in every way for his limitations and challenges made him who he was. He was perfect because this is how God choose to make him. He was never a mistake, but a gift and a reminder that God is God: provider, healer, sustainer, and keeper of life. We love our son and miss him very very much.

=================================

Thanks for your continued prayers.
- Andrew & Marie

Readings - Lamentations

2009-08-18T11:38:00.000-07:00

I will never forget this awful time,
as I grieve over my loss.

Yet I still dare to hope
when I remember this:

The faithful love of the Lord never ends!
His mercies never cease.
Great is his faithfulness;
his mercies begin afresh each morning.

I say to myself, “The Lord is my inheritance;
therefore, I will hope in him!”

The Lord is good to those who depend on him,
to those who search for him.

~ Lamentations 3:20-25 (New Living Translation)

Josiah's Song - Lyrics

2009-08-11T08:22:00.000-07:00

Our friend Greg Harris wrote a song for Josiah over a year ago. For Josiah's memorial, Greg updated a few of the lyrics. This version of the song can be found below.

==========================================
JOSIAH'S SONG

Little boy , so sweet , so small and so strong
You taught us how to live, to love and hold on.
Little boy , you fought so hard and came so far
And you taught us what strength and courage really are.

Through the tears of joy and pain , You kept fighting
Through the fears and doubts and strains , You kept fighting
Now you’re home our beautiful son , Now you’re home our beautiful son, Because He has Saved
When we think of these past years, and all that you’ve done, we can almost hear you say…

Daddy when you held me in your arms, I was home
Mommy when you held me close, I was home
Daddy when I heard you laugh, it cut right through my fears
Mommy when I heard you cry, I tried to dry your tears
And I kept fighting, I kept fighting, But now there’s no more fighting
Because He has saved me

Little boy , there is so much of life , you didn’t see
But in the arms of Christ, now you’re free…

Next Steps

2009-08-09T13:01:00.000-07:00

Marie & I will be dropping below the radar for a few weeks as we continue to grief, reflect, and adjust. If there is silence on the blog for a while, I know you will all understand as we try to navigate our journey publically and privately.

Thanks for your on-going prayers, support, and love. I know many of you will be 'moving on' and returning to 'normal life' faster than you can believe and that's OK - you don't have to feel guilty about that.
- Andrew & Marie

Josiah Trees

2009-08-08T09:31:00.000-07:00

Marie & I will comment sometime later about Josiah's memorial service and the celebration that it was. There were a couple people who left without being able to purchase a tree because they were all sold out. Afterwards we found a few trees in the gym that were not sold. If there are people interested in still purchasing a small tree in memory of Josiah, go ahead and contact Arnold Community Church and they will arrange it.

- Andrew & Marie

Josiah's Memorial - Live Stream

2009-08-07T02:43:00.000-07:00

Yup, I'm up this late. Kinda wired because I was working on Josiah's Life Story.

We're going to streaming Josiah's Memorial online (thank God amazing church friends!) Check out the following site if you are unable to attend Friday evening:

http://josiahmemorial.homeip.net

UPDATE: Reminder, the memorial begins @ 6 PM 'BC Time' (pacific)

- Andrew & Marie

Josiah's Memorial - Recording etc.

2009-08-06T21:11:00.000-07:00

Hi Everyone

A few have wondered if Josiah's memorial will be available online/live. At this point, I don't think it's going to be available live, but we are aiming to put it online for a while so that friends and family who can't make the ceremony won't feel so left out.

Josiah - Obituary

2009-08-06T15:30:00.000-07:00

Hi Everyone

FYI, Josiah's obituary will be in 2 Abbostford papers and 2 Chilliwack papers this week (Thursday, Friday I think). For those who aren't local, I have posted the obituary below. Eventually Josiah's obituary will be in the Passport (Briercrest alumni publication) and the MB Herald (conference publication) as well.

Josiah Andrew Haak
Febuary 16, 2007 - August 2, 2009

It is with broken hearts that we announce that our son Josiah has gone to be with Jesus. From the day he was born Josiah has been “supported by God” (the meaning of his name) and faced every challenge with courage and strength. Despite his limitations, his smile, touch, and eyes that looked right at you shared more than any words could say. Through his father’s blog, people from around the world were able to follow his life in a unique and powerful way (andyman-sdg.blogspot.com).

Josiah is survived by his dad and mom, Andrew and Marie Haak of Abbotsford, and is mourned by a community of friends and family. He was greeted in heaven by two friends who have gone on before him and his great grandparents.

A memorial service celebrating Josiah’s life will be held on Friday August 7th at 6:00 PM at Ross Road Community Church (3160 Ross Road, Abbotsford, BC). In lieu of flowers and gifts, small potted trees may be purchased at the service with all proceeds going to BC Children’s Hospital.

Josiah's Memorial - Directions Etc.

2009-08-05T23:09:00.000-07:00

UPDATE: The Abbotsford International Airshow is on this weekend, and so traffic thru town and especially on the Fraser Hwy (leading to Ross Road Community Church) will be full. Please plan accordingly.

Hello Everyone

We just want to confirm that the times and locations for Josiah's Memorial and Viewing are correct.

Friday August 7th, 2009
9:30-11:30 AM --> Viewing @ Henderson's Fraser Valley Funeral Services
(34537 Marshall Road, Abbotsford, BC)

6:00 - 7:00 PM --> Memorial @ Ross Road Community Church
(3160 Ross Road, Abbotsford, BC)

7:00 PM onward --> Reception @ Ross Road Community Church
Refreshments, memories and open-mic sharing.

Maps for directions are below.

Henderson's Fraser Valley Funeral Services

View Larger Map

Ross Road Community Church

View Larger Map

- Andrew & Marie

Josiah Haak - Pictures

2009-08-05T01:38:00.001-07:00

(July 12th, '09 ... taking a roadtrip break near Salmon Arm, BC)

(July 13th, '09 ... on our way to Calgary!)

(July 14th, '09 ... meeting his great-grandmother for the first time)

(July 13th, '09 ... our last family photo I think ...)

(July 21st, '09 ... playing with Daddy and proving he is strong and has the best smiles ever)

Giving in Memory of Josiah

2009-08-04T23:13:00.000-07:00

Thank you all for the many ways you have been expressing your sorrow and kindness to us. The decisions to be made and the details that are required have been snowballing as reality sets in and we're hoping that we are getting the right information into your hands as it is needed.

Marie and I have decided that we'd really like to give back to BC Children's Hospital for all that they have given our family. In lieu of flowers and other gifts, please consider these options:

1) BCCH has a "In Memory Of" online donation service which can be accessed here.

2) With the assistance of BCCH, a "Josiah Haak Wall of Tribute" has been created on the BCCH website. While you can there with a little clicking, the direction link is here.

3) Finally, one that Marie & I are very excited about: instead of flowers and alike at his memorial service, we're going to fill the stage with the things that gave Josiah the biggest joy - trees. We are inviting anyone who is interested to purchase a small potted tree that will be available at his memorial as a reminder Josiah's life and how much trees filled him with such joy. All the proceeds of these sales will go to BCCH.

Hopefully this information can answer the questions you may have and give you some direction.

Thank you for the many forms your generousity, devotion, and tenderness has been seen this week.
- Andrew & Marie

Josiah's Memorial Info

2009-08-04T18:41:00.000-07:00

Hello Everyone

This one will be brief. I know many of you are waiting for news so that travel plans can be made. Please pray that we will not run into any complications as we prepare to celebrate and remember the life of our Josiah: there is a slight concern that the autopsy may delay things, and that it might be difficult to find a casket that works for Josiah on short notice.

Friday August 7th, 2009
9:30-11:30 AM -- Viewing @ Henderson's Funeral Services (Abbotsford)
Noon -- private graveside service
6:00 PM -- Memorial Service @ Ross Road Community Church (Abbotsford) Reception to follow.

... address and directions will be posted soon.

Thank you for your prayers.
- Andrew & Marie

Thank You

2009-08-04T03:30:00.000-07:00

Marie & I couldn't sleep and read through all the facebook, blog, and email comments. thank you everyone for your kind words and prayers.

Josiah Andrew Haak: Feb 16 '07 - Aug 2 '09

2009-08-03T11:59:00.001-07:00

Hello Everyone

I realize that there will be many of you who have been following Josiah's story since the beginning who are aching to hear what happened in the last 24 hours that so quickly brought our precious Josiah into Jesus' presence.

It doesn't make it any easier, but we can see many signs along the way of how God ordained this day to be. Josiah had just completed his first big road trip: he visited Grandpa & Grandma's farm in Enderby, he got to walk through Gardom Lake Bible Camp with us, and he was able to visit with family - especially his great-grandmother - in Calgary. Josiah passed in peace, and was assisted by a Christian firmen who we knew and a Christian police officer who took our phone book and made calls on our behalf. Josiah's body was sustained until the afternoon so that I and others were able to say our good-byes, though it quite possible that he was already in heaven and his body was just on auto-response.

Josiah had a wonderful day on Saturday. He went for a walk through his favourite parts of Mill Lake, went shopping and bought gifts for some of his friends, and attended his buddy Sammy's birthday party, where he played and played and played.

There was no indication that anything was wrong. Josiah was fully cleared up from his ear infection that he had 2 weeks earlier. He was sneezing a lot from his allergies, but was incredibly happy, content, and playful.

Marie was woken by our nurse around 12:30 AM. Josiah was in a typical seizure and then nothing. No stress, no coughing, no slowing down of the heart, just nothing. In second Josiah was gone in complete peace. The nurse was so confused, and Marie and him just thought the sat-probe was off because there was no indication that Josiah went through any trauma. But he was white and gone.

You can imagine what happened: confusion, screaming, alike. I was in Grand Forks with our youth camping trip and so it was Marie and the nurse. Marie did CPR and pounded his chest until the paramedics arrived. A fireman from our church was first on the scene. A police officer called family and church members, and arranged for Grand Forks RCMP to come to our camping site and inform me of the situation. I left Grand Forks at 3 AM and was able to be with Marie & Josiah at BCCH by 10 AM.

The firemen and paramedics first tried CPR, then the paddles which didn't work. They gave him a short of epinephiryn (sp?) - heart juice - and continued with the paddles which this time re-started his heart. But Josiah had been without a pulse and not breathing for at least 10 minutes.

Josiah was taken to Abbotsford Regional Hospital and then flown to BCCH. When he reached BCCH, his temperature was out of control, a sign that his brain was unable to function properly. His body temperature reached 42 C - hot enough to damage his brain - a so they cooled his body with a ice blanket to help him out.

By noon he had stabilized, heart rate around 150 bpm and his temperature was down. And though he was off his sedatives, he didn't indicate that he was with us. Though he was breathing on his own and would wiggle his thumb, smack his lips, and flicker his eyes a bit, the absence of any coughing to clear his lungs and his soaring temperature were enough of a sign to realize that he was gone.

We opted to treat him as would at home: Tylenol, oxygen, etc and see what would happen. It is difficult because the ventilator complicates the whole dying process. It was obvious within a few hours that he was getting worse: his temperature came back, his heartrate became irregular and sky-rocketed and his breathing became very stressed and ineffective.

Josiah passed around 5:30 PM on August 2nd, 2009. He was surrounded by his parents, Marie & Andrew, his grandparents, Don & Bev Haak, and our pastor Rob & Leanne Dyck. We sang with wavering voices, we cried, and Marie & I held Josiah close as he went. It was difficult - the worst day of my life - but we believe that despite what his body was going through that Josiah was in peace, felt no pain, and was perhaps already in heaven though his body was with us.

We were blessed to have many of our family and friends join us as Josiah was entering heaven. Many were able to say their good-byes and hold him one last time. We are blessed to be loved so deeply, death is always best as a community.

We know Josiah is best off in heaven and for that reason we don't want him back. But we miss him so much. He was in God's hands from the very beginning, and he is there now in God's presence free of all the challenges and obstacles that he faced on a daily basis here.

As you all know, Josiah was unique in more than just his physical challenges. He had a presence, a spirit that transcended all of his limitations so that he touched more lives than any toddler could. Strangers on the street, families on all continents, and friends and family who interacted with him regularly, we all experienced God's blessing through the love Josiah gave everyone. His smile, his touch, his eyes that looked right at you shared more than any words could say.

Memorial arrangements will hopefully be communicated within the next day. We ask for prayer, not only for us and the many families who are grieving, but also for the planning that needs to take place through the next week. Obviously we want the whole process to be as easy and trouble-free as possible.

There are no words to express the heartbreak that Marie & I will live with for the rest of our days. And we understand that many of you will also walk with that same heartbreak. And in the same way, there are no words to express our sorrow for all of you who are grieving alongside of us.

For all those who have cheered, wailed, prayed, and supported Josiah, Marie & I through the last two and a half years, we are grateful beyond comprehension. Josiah lived and beat the odds because of the prayers of you were heard by our powerful God. Josiah was "supported by the Lord" (as his name means), and he continues to in that reality now by Jesus' side.

There is much still to say, and maybe there will be time for Marie and I to share more of our heart. We'll see what the next days and weeks will bring. For the moment we live just to make the next decision.

We are broken. Yet in the grace, strength, and mercy of our God and Saviour, and the presence of Spirit and people, we are forever blessed.
- Andrew, Marie, and - our precious gift from God - Josiah

Josiah Emergency - 6:15 PM August 2nd

2009-08-02T18:18:00.001-07:00

Josiah has gone to heaven to be with Jesus.

Josiah Emergency - 4:30 PM August 2nd

2009-08-02T16:34:00.001-07:00

Josiah is fading and will be in heaven soon. If anyone needs to come & say good-bye to him they are welcome to join us @ BCCH (ICU) and say good-bye. Thank for you the prayers, the love, the tears.

- Andrew, Marie & Josiah

Josiah Emergency - 2:30 PM August 2nd

2009-08-02T14:31:00.000-07:00

Hi Everyone

Josiah's temperature is slowly coming down (40 C to 38.8 C), but still a fever. thanks for the prayers. his lungs are very wet and we're unable to clear then - please pray that Josiah's lungs will clean up, and that his work of breathing + heartrate will lower .. not much responsiveness over the last bit ...

Josiah Update - 1:00 PM August 2nd

2009-08-02T13:03:00.000-07:00

Hi All

I'll copy 'n paste my Facebook posts here (yeah, I still refuse to Twitter-fy).

--------------

Josiah has been wiggling his thumb, moving his lips, and flicking his eyes but it is nothing definitive... could mean something, could mean nothing (he may be coming around or his brain may just be auto-responding) ... his vent settings are better (meaning he is breathing better on his own) ... you can pray that his temperature will go down ...thanks for all your prayers ...

Josiah Emergency - Sunday August 2nd

2009-08-02T11:17:00.001-07:00

Hi Everyone

This is the hardest thing a father must write:

Last night, Josiah had an unknown medical emergency that took him into cardiac arrest. He was not breathing nor had a pulse for 10 minutes before paramedics were able to resusitate him with CPR, paddles, and meds.

Josiah is now at BCCH and is unresponsive. Over the next hour or so we are going to watch his vitals to see how he responds coming off the sedatives. It is most likely that his mind and body were damaged beyond repair during his episode.

Marie need God's wisdom, strength, and love as we care and make decisions for our precious Josiah today. Please pray that the doctors will give us sound counsel and take good care our boy. Please pray that God would reveal his plan for Josiah: that Josiah will be responsive and demonstrate mental capacities, or that God is waiting for Josiah to join him heaven.

This the hardest day of being a parent, a human being. And it may be followed by more harder days.

We follow a good God who is loving, powerful, and sees the world in a way we can't. We have the hope of heaven, the promise of reunion with Jesus and all those who loved him. Marie and I don't want to say good-bye to Josiah, to live our lives with his echos and memories, but we will follow our God.

Thank you for your prayers.
- Andrew, Marie & Josiah

A Josiah Update - Thursday Evening July 9th

2009-07-09T20:54:00.000-07:00

Hi Everyone

Josiah was discharged today from BC Children's. He will be continuing some antibiotics at home, and we are hoping that it won't interfer with our holiday plans. Thankfully, Marie & Josiah's stay in the hospital was a happy one: lots of visiting with friends!

Josiah's bloodwork came back fine, now we're just waiting for chest infection to fully clean up.

As you pray for his health, could also pray for his skeletal structure: we're trying to figure out what to do next with posturing and developing etc, and have some concerns for might happen if his spine continues to worsen.

Thanks for the prayers.
- Andrew, Marie & Josiah

A Josiah Update - Noon Wednesday July 8

2009-07-08T11:36:00.001-07:00

Hi Everyone

A quick update: Josiah's lab results will come in this afternoon. If they are positive, Josiah may have to stay in the hospital until Tuesday. Of course this would put a serious dent into holiday plans for July.

Josiah's on a constant IV, which means he can't leave the room and Marie doesn't leave often. Other than the boredom that comes from being stuck in a room for days, Josiah is doing fine. He's even taken to the new trache alright.

Please pray for a speedy recovery, that these antibiotics will completely remove the illness, that we'll find the rest we need this week and still be able to make our holidays happen.

Thanks.
- Andrew, Marie & Josiah

A Josiah Update - Evening Tuesday July 7th

2009-07-07T19:00:00.000-07:00

Hi Everyone

Just to pass along, Josiah is going to be hanging out at BC Children's for a couple of days. Last week he had started antibiotics for a chest infection and it appears that the antibiotics weren't strong enough and the infection has passed into his bloodstream. So he's going to be taking antibiotics via IV for a while.

Thankfully, Josiah's been a pretty good mood about it all. There were a few days when he couldn't get off his ventilator because had so many secretions, but he's been doing very well the last couple of days. We are also trialling a new trache: it doesn't have as long of an extension so it should make it easier for him to breathe when he's not on his ventilator.

If you could please pray that Josiah would get better soon that would be very appreciated!

Thanks everyone.
- Andrew, Marie & Josiah

A Josiah Update - Thursday June 18th

2009-06-18T14:47:00.000-07:00

Hi Everyone

Just a short note that you can pray about. Josiah's had an ear infection again for about a week now. We've been extrememly fortunate that we've been able to keep the pain to a minimum by cleaning it 4x a day (which he isn't so excited about it!). The swab test took longer than usual process because - well, to be blunt! - there's a lot of bad stuff in his ear right now.

Josiah's current ear infection is a combination of staph infection, MRSA (that's "staph on steriods" a strain of the bug that is super-resistant), and strains of the pneumomia and strep throat viruses. Thankfully he doesn't have symptoms of pneumonia and strep throat, but it is a concern that these bugs are taking up residency in his ear right now.

We received our antibiotics today (they don't look very nice: "may cause burning sensation, must keep on his side for 5 minutes" - yeah right!), and so we're praying that this will clear up all the bugs that are creating this infection. We need this medicine to work because Josiah is allergic to the preferred medicine for these infections. Please pray also that we'd be able to get on the same page as his ear doctor. We would really like to see his ear tube removed since (in our opinion) it is causing more harm than good, but the doctor is insistent that the tube must stay.

Thanks for everything you do for our family!
- Andrew, Marie & Josiah

A Josiah Update - Friday Afternoon June 5th

2009-06-05T16:53:00.000-07:00

Hi Everyone

Just a quick note that our BC Children's Hospital Miracle Weekend interview will be on Global TV on Saturday June 6th @ 9:44 PM.

Another quick blurb: Josiah is CHOWING through his food, now sometimes turning down the bottle because he wants 'big boy food' - very cool! So far in the last couple of weeks he's had pears, apple-plum, apples, and butternut squash!

Have a fantastic weekend!
- Andrew, Marie & Josiah

A Josiah Update - Morning Monday June 1st

2009-06-01T11:19:00.001-07:00

Hi Everyone

Just a few things to post and highlight here in 'Josiah-Land'. To start things, 2 weekends ago we returned to Aquadel Golf Course (Cultus) to do a short interview for the BC Children's Telethon that is coming up next weekend (June 6-7). Global and BCCH were interested in doing a follow up story with Josiah since he's been home for just over a year now. We didn't know this, but they even used Josiah's bio for the main story that weekend (I've uploaded a scan of the pamphlet below - click the image to expand and read). We don't know yet when Josiah little promo will be shown during the telethon, but when we know we'll post the info here.

In other news, Josiah got a new chair last week. The new chair is great in a couple of ways: first, it's an actual chair and not a 'lazyboy' like his previous chair was. It keeps him in proper sitting position (90 degrees) and he is absolutely loving the freedom that comes with it. Second, the chair can detach from its base and can be attached to a regular kitchen chair - this is huge because we can take it with us and have him join us at the table for meals.

Josiah is also taking baby food in large quantities - yay!! We've been able to pick up a few new techniques from his occupational therapist, and Josiah is thoroughly enjoying the new sensations. For the week he was only take food off our finger (maybe he didn't like the hardness of a baby spoon?) but last night he confidently took food off a spoon for the first time - woohoo!

Lastly, Josiah was having a lot of fun in his bathtub last night. For the first time, Josiah was splashing with his hands in the water! While he has always enjoyed his baths, Josiah has always resisted playing with his hands in the water, but his willingness to explore and play last night speaks volumes of his confidence.

And for your viewing pleasure, I've uploaded a short video of Josiah eating some apple-plum baby food yesterday!

Josiah Eating Baby Food (May 31 09)

Have a great day everyone - thanks for all your prayers and cheers!
- Andrew, Marie & Josiah

A Josiah Update - Tuesday Morning May 19th

2009-05-19T07:48:00.000-07:00

Good morning world.

It's been almost a month since we last posted, but there isn't much tell in the way of Josiah News. At the beginning of the month we had our first "family vacation" by heading out to Harrison Hot Springs for our church conference's Pastor & Spouse Retreat. We didn't get much sleep (hard to pack a nurse along!) and Josiah was dealing with an ear infection (needed a lot of hands-on time since the noise bothered him), but it was such a great accomplishment to say that we actually did it! :D

Josiah has come completely off Dilantin (seizure med) and is maintaining his seizures well. He's also needing much less diuretics, which is very encouraging. He also spends most of the day off the ventilator, 10+ hours on his 'nose' - such a blessing!

Last week Josiah had an ECG and echo exam for his heart. Everything appears to be functioning well, despite his anomolies. The remaining 'hole' he had in his heart has closed up on its open, which is a big answer to prayer. There are still a couple of oddities (such as a VERY large artery, a small tissue 'flap' that is forming) that the cardiologists would like to keep their eyes on, and so he'll had annual heart check ups from now on.

Josiah continues to deal with ear infections, and this last one has been a doozy. In addition to his ear woes, he seems to also be fighting a bug or something: diarrhea for a couple of days and now this morning very wet lungs. You can pray that he gets healthy and doesn't require a hospital visit/stay.

Prayer Requests:
~ (Permanent!!) Healing from ear infections + wisdom as we work with his doctors about this
~ On-going development: motor skills, communication, and positioning
~ General health, well-being and comfort
~ Energy + wisdom for Marie & I

Thanks for all you do for our family! :)
- Andrew, Marie & Josiah

A Josiah Update - Late Sunday April 26th

2009-04-26T23:59:00.000-07:00

Hello Everyone

We have no nurse tonight so I'm taking the opportunity to fill in a blog post. I can't believe it's been over a month - my goodness, my biggest apologies! OK, too be honest it's really hard to remember all the newsworthy bits of the last five weeks, but I'll do what I can.

Probably the easiest for me to start with most recent news. Josiah had a quick trip to Emergency this morning because he had 6-7 absentee seizures in a 3-hour period. Needless to say, we let him skip church ;) Thankfully he has no respiratory issues, just an ear infection unless the bloodwork shows something else. He was home by lunch and has had a great rest of the day.

On a seizure note, we're extremely excited to see Josiah's Dilantin medicine being successfully weaned (his Lamotrogine medicine is being increased simultaneously). In a just a few more weeks he'll be completely off Dilatin and hopefully that will ease his teething pains (Dilantin toughens the gums).

Josiah has been going for very long stints without the ventilator. There have even been a couple of days where he really only had his ventilator for naps and sleeps. Very awesome! I can't tell you how great it is to move him around 'wireless' ... not too mention it eliminates a bunch of white noise in the house!

Josiah was able to have his sight and hearing examined this past month. Josiah may need hearing aids in the future, but the good thing is that at the moment it is only fluid which is his obstructing his hearing. We also found out he is near-sighted, and will probably need glasses down the road. His eyes also have the tendancy to 'shift' and he does have one eye that can be a little lazy, but the muscles appear to be well which is a good sign.

After having Josiah's trial walker for a week, we determined that his pelvis probably isn't ready yet to support the weight of his upper body (the walker had a bicycle seat between his legs that he would rest on). So we'll be seeing if a differet kind of walker will work for him. Thankfully, his ingrown toe nails (yeah, both of his extra big toes were ingrown - the ankle brace straps that went across his toes caused the nail to dig in!) have improved so we might be able to return to using his braces.

Here are some specific things that we have been praying about:
~ That Josiah will be able to walk (crawl, roll over, etc)
~ That Josiah will be able to learn how to communicate with his mouth, hands, and eyes and that we'll be able to understand it
~ That Josiah will stop having ear infections

.... and, one little last thing - a treat for sticking around to the end of this lengthy post!

Josiah went to the zoo last Thursday and he got to meet a local sports hero who was taking a holiday with his kids. The only thing is, you have to guess who (which!) he had his picture taken with!!

OK, you have a 50-50 chance: Josiah got to be held by Daniel Sedin! It was completely coincidental that he was wearing his Canucks toque and shirt!

Thanks for all your prayers, cheers, and support.
- Andrew, Marie & Josiah

A Josiah Update - Late Tuesday Night March 17th

2009-03-17T22:46:00.000-07:00

Hi Everyone

Just a short one (more of an excuse to post a BEAUTIFUL picture of our boy than anything!)

There is one note-worthy progress to pass along: Josiah is starting trials OFF his ventilator! Woohoo! We're very very happy with his ability to handle up to 2 hours continuous off his ventilator. It certainly gives us and him more mobility (plus it cuts down on the noise in our home!) Most of the day he will remain on his vent, but we'll give him 2-3 times throughout the day to go 'wireless'. It's a wonderful, wonderful feeling.

Also, Josiah demonstrated for the first time today his ability to use his hands to push himself back into a sitting position. Usually he uses our fingers as a support to pull and push himself back and forth, but now he's figured out how to do it without our assistance! Yay!

Anyways, here's a picture taken of Josiah last week. Enjoy!

Grace & Peace
- Andrew, Marie & Josiah

Josiah Update - Saturday Afternoon March 7th

2009-03-07T14:15:00.000-08:00

Hello All

Sorry, it's been a while since we've put some info up here. Josiah seems to have settled out from his toxic experience/hospital stay. The antibiotics appear to have cleared up his ear infection (yay!! thanks God!) and he's managing his secretions well. It feels like he has had a few more seizures than normal (the usual sleep-time tremors) and so we're going to have his medicine levels checked again to make sure they are not too low.

On the developmental side of things, Josiah is demonstrating better posture and body control - moving away from his floppy self which is so great to see! He's using both hands more, pushing and gaining arm strength, and he's chowing down on his bottles like never before. That's been a very exciting change, since we've been able to eliminate his 4:30AM and give him more to drink while he's awake through the day. That his body can handle it is a big testament to the fact his water retention issue is slowly being overcome. We're also grateful because his form-fitted chair was refited so that he's much more comfortable in it. Further, he's going to be upgrading to a new style of chair which can be attached to any regular chair! Woohoo! That will certainly make visiting and travelling easier.

Marie and I were talking this morning about how glad we able that Josiah shows that he can remember. It's something we can't take for granted since many special needs children need repetition before something is remembered. An example we talked about is one day when we held Josiah's hands in his chair and pulled him across the kitchen floor. He loved it, and the very next day when we held his hands again in that same chair he anticipated it (and started bracing for it!) before we even started pulling! God is good.

That'll do for now. Thanks for the prayer, love, and support.
- Andrew, Marie & Josiah

Josiah Update - Morning Thursday February 26th

2009-02-26T09:03:00.000-08:00

Hi Everyone

What a treat - frequent updates!

Josiah's secretions have muchly improved - thanks for the prayers. He still has his goobers, but he's handling them much better, sat-ing better, and they're not as yellow-ish.

Unfortunately, he's had 4 absentee seizures this morning in a period of 90+ minutes. (FYI, an absentee seizure is 'when the lights are on but no one is home' - awake, but not engaging, breathing not enough, etc). The last time he had this many in such a short period was when his dilantin levels were too low. We gave him lorazepam (seizure/knock-out med) and we're waiting for our family doctor to send us a bloodwork requisition so that Josiah's levels can be tested against yesterday's results (his dilantin levels were good yesterday, so it's strange that things are so off today).

So thanks for your prayers. We cling to them.
- Andrew, Marie & Josiah

Josiah Update - Late Night Tuesday February 24th

2009-02-24T23:12:00.000-08:00

Hi Everyone

Just giving an update of Josiah since coming home. Josiah's definitely been doing mostly good since coming home, his ear especially has improved so much and we are really grateful. He's been having moments of pure bliss - we haven't seen him this happy in weeks!

Josiah's chest infection, unfortunately, hasn't appeared to have improved at all. His loogies are still terribly thick, frequent, and yellow-green ... not pleasant at all and they are really scaring him! We are going to continue with antibiotics for another week, but if there isn't any noticeable improvement in the next couple of days he may go hang out at the ICU for observation. There's a particular nasty virus going around and they want to make sure that he moves through it fine.

So if you could pray for his health and improvement we'd really appreciate it. Josiah is also getting bloodwork tomorrow morning for his dilantin levels (seizure med) to make sure they are maintaining well with his new tablets.

Thanks for blessing our family with your prayers - it's a great gift that we don't forget.
- Andrew, Marie & Josiah

Josiah Update - Saturday Morning February 21st

2009-02-21T07:15:00.000-08:00

Good morning :)

Josiah was discharged last night around 7 PM and we got home some time after 9. He was pretty dozy, but obviously happy to be home ... too happy in fact: he picked up a second wind of energy and played until midnight (thankfully, we had a nurse so we slept while he partied!)

Josiah will continue with antibiotics and ear drops for a few more days. The doctors are pretty convinced that the bizarre behavior he demonstrated was a toxic response to super-high dilantin levels. To give you a sense of how high the levels were, Josiah finally dropped into the very high-end of the normal range last night, 79, but was at 148! Wednesday night.

Josiah's infection is clearing up (white blood cell count has dropped), and he is much more temperate except he is very sensivitve with his fingers (LOTS of blood test pricks) and IV arm. But, we are so grateful that his IV stayed in for almost two days! During his last hospital stay, he had 3 IV's in less than a day because they kept coming out.

Thanks for all the prayers and checking in. It appears it's "life back to normal" for us ;)

Grace & Peace.
- Andrew, Marie & Josiah

Josiah Update - Noon Friday February 20th

2009-02-20T12:06:00.000-08:00

It looks like Josiah will be coming home tonight! Josiah is set to go after his last IV antibiotic tonight, and we're excited that this hospital stay has been so short. He's in much better spirits today (was able to have a bath, trache ties, and handled crying hard without getting 'dusky'). His dilantin levels (seizure med) are still high, but they believe they should be back within normal range tonight. His trache aspirate (that's loogie or booger for the uninformed!) shows he does have an infection, but nothing to be alarmed about. I imagine he'll continue with oral (g-tube) antibiotics for his ear infection for a while to make sure that it's completely cleared up.

Thanks for the prayers.
- Andrew, Marie & Josiah

Josiah Update - Evening Thursday February 19th

2009-02-19T19:53:00.000-08:00

Hi Again

Josiah is doing well. Slept a lot this afternoon, mostly out of boredom I think ;) Marie was able to get a lot of sleep too ... so I got to watch the hockey game! Yay!

Josiah is taking IV antibiotics for his ear infection. His dilantin (seizure med) levels were astronomically high, so that might be the cause of his bizarre behavior last night, but they are not certain what exactly happens when dilatin levels become toxic. We've used liquid dilantin since May '08, but something about this last dose ... the suspension didn't hold together well enough and got too concentrated at the bottom we suppose. His levels are going to be monitored so that they drop down to a normal range.

This will probably be the last update for the day. We'd like to see Josiah head home tomorrow, but that all depends on his antibiotics and if they need to be continued via IV or if he can switch to oral. All in all, Marie and I have enjoyed our 'family time' :)

Thanks for the prayers.
- Andrew, Marie & Josiah

Josiah Update - Noon Thursday February 19th

2009-02-19T12:06:00.000-08:00

Hi Everyone

Here's a blur-through of what's been happening this morning. Josiah and Marie arrived at BC Children's around 5 AM and he's been really comfortable. He's awake, playing, not ecstatic but content, and his vitals are good. Marie's pretty exhausted (less than an hour's sleep) and so I'm leaving soon to spend the rest of the day out there.

Right now priority number one is to treat his ear infection with antibiotics. His lungs and respiratory system look great so the problem isn't there. Neurology is supposed to stop by today and help give their thoughts. With the typical caution that you want to have associated with the ICU, Josiah probably won't be coming home until Monday since they will want to observe him for a while, watch for improvement, and try to determine what this odd behavior was and what triggered it.

If people are interested in dropping by to say hello, please call either my cell number or the ICU first to see if we're awake enough to socialize. Thanks!

Thanks for the prayers.
- Andrew, Marie & Josiah

Josiah Update - Laaaaate Wednesday Night

2009-02-19T01:06:00.000-08:00

Hi Everyone

Josiah had a return trip to the Abbotsford hospital tonight. After coming home this afternoon and sleeping wonderfully for almost six hours, he woke up and was happy but around 9:00 PM he began some very alarming panicky/completely-out-of-it/hyperventilating behavior that he couldn't control and we couldn't stop. It didn't appear to be respiratory related nor did it appear to be pain (he wasn't crying per se, just freaking out) and he wasn't interactive and nothing could comfort him. We attempted to sedate him, but that didn't work either.

The paramedics were called (LOTS showed up!) which put an interesting cap to our Young Adults night, and Josiah was taken to emergency. After at least an hour of this behavior it stopped and Josiah was able to focus, respond to us, be calm, and 'talk' before he decided that it would be most excellent to sleep.

So he's receiving antibiotics and Marie's with him at the hospital. Whenever it is possible he will be transferred to BC Children's where they will try to sort out what happened (bizarre seizure? ear infection gone bad? weird respiratory distress?) We're praying for fast healing and appropriate action along the way ... and we're grateful that our God continues to sustain and provide for our little guy. We're also praying that his chronic ear infection will be dealt with once and for all.

Thanks for your prayers, concerns, and well wishes. Please continue to prayer for our energy, wisdom for all, comfort and healing for Josiah, and safety. I'll be posting updates as I can throughout the next couple of days.

Grace & Peace.
- Andrew, Marie & Josiah

Wednesday February 18 - Josiah Update

2009-02-18T16:01:00.000-08:00

Just a 'FYI', Josiah had a short stay in the ARH emergency today as his secretions were getting worse. He started showing signs of a cold back on Friday, and the loogies were just getting thicker and more frequent each day. This morning it felt like we couldn't keep up with the goobers he was coughing, and let's just say they were a brilliant green tone! At one point we had to give him oxygen and increase his pressures because he was having a hard time catching his breath. Anyways, we had a great experience at the hospital (except for the parking price - yikes!), and we got back home within 6 hours.

Josiah went through the works (x-ray, swabs, blood and urine samples, and trach aspirate) and while his lungs are a little wetter than normal it appears the biggest issue he's fighting is an MRSA infection in his ear (probably co-related). We weren't surprised: he's had a chronic ear infection since September and we're hoping that this is now ample reason to remove the tube in his ear. We have been given some new (stronger) antibiotics to use, and we're hoping and praying that these will clear up his problems.

Thanks for your continued prayers and support. Josiah (and Marie!) are both comfortably sleeping at home ... and I'm off to pick up stuff in town and get ready for Young Adults!

Grace & Peace.
- Andrew, Marie & Josiah

It has been almost 2 years!

2009-02-06T09:51:00.000-08:00

The Haak Family Review of the Years?This is a picture drawn by one of our youth named Colton F.

This was my belly on Feb 5th 2007, 11 days before Josiah came. Only 7 months and 2 weeks! uncomfortable...

One of the Haak family pictures taken in November 2008

Oh... it is fun and messy. We finally found him a great smock

Josiah with Mr. Crinkle paper just before we had to replace it with a new one. He was just drawing so that is why the color on the face. He always ends up with the felts on his face.

So have you forgotten that we were young to! Andrew looking great. Any resemblance to Josiah?

This would be me, yes... Marie. 'Aint the dress great!

We have had a great many days. Josiah is down on his pressures to 6 and 12. This means that we are one step away from being able to try him off the vent for parts of the day! Wa hooo!! Freedom! I took Jo to the park on Tuesday and he really enjoyed it. He is so strong compared to the lat time he was in the swing. He was working on sitting up straight in the swing and kicking his legs as he was being pushed back and forth. He laughed down the slide and could not get enough.

He seems to not be able to get over the chronic ear infections. I do not know what is going on. You can really pray for that. It is really bothering him lately and he has had many pain cry's in the past two days. As us moms know, we want to cry to when we see that.

He has been working on an ab ball lately and the stability he is getting is incredible. He has been pushing through is arms and balancing at the same time. He has been pushing with is feet leaning on the ball and working toward a full standing position on on his own initiation. I admire him because he never gives up. He was working on turning an object on one of his toys and would not give up. He did not accomplish it yet, but with that attitude he will some day.

He has also taught me something again this week. When Jesus says that we are to have faith like a child there is more to it than we realize. Kids are so quick to forget and move on. They do not dwell on the past but enjoy the present. They forgive instantaneously and say sorry when told to. Basic important things in life that us adults dwell on to much and complicate. Josiah does this every day. I squish water up his nose to clean it out, he cries or fusses but then smiles and gives hugs when done. I accidentally pinch his skin during trach ties and he cries and is upset but again when it is over he smiles and gives hugs. Challenge from Josiah and all other kids. Do you have faith like a child?

I am grateful for all your love and time that you spend with us on this blog. I also want to say thanks publicly to all my respite care givers who helped out tremendously when I was sick for so long. Thank you from the bottom of my heart. Thank you also to all who continue to pray for us and bless us in this way. Thank you to all who visit me and spend time in my home to encourage and lift me up. May God in return bless you all in unique and special ways.

Love to all of you Marie Andrew and Josiah.

A Josiah Update - January 31

2009-01-31T07:35:00.000-08:00

Good Morning all

Just a short note to say, yup Josiah's sick. He started antibiotics about two days ago because his secretions were so thick that he was 'satting' low (his oxygen count was lower). It's a cold, maybe more like a chest infection. It gets a little tricky because one of his seizure meds (the one we're going to wean him off eventually!) can have a negative reaction with his 'go-to' antibiotic, so we have to be pretty strict on when it is given. He's been a trooper about it, a little grumpy or sleepy at times but most of the time he doesn't act sick and still has his appetite. If you could pray for his speedy recovery that would be great.

Recently we've experienced some change in Josiah's support staff. There may be some difficulty over the next few months as we adapt and make new arrangments, and we're sad because we really enjoyed working with these three individuals and they were amazing for our son. But it's an opportunity to connect with new people and we are confident that our son will continue to be taken care of well. If you could pray for that as you think of Josiah, we'd really appreciate it.

Grace & Peace.
- Andrew, Marie & Josiah

A Josiah Update - January 29th

2009-01-29T09:41:00.000-08:00

I'm trying to increase frequency here - it helps in the long run!

Josiah had a day full of clinics a few Mondays back, and we were pretty excited with the progress he is making. He was able to his pressure support lowered another notch so that he's down to 13 (from 16 when he left the hospital last May). If he continues in this way, he may begin trialing off the ventilator in a month and a half! Josiah's diuretic totals were also lowered, a great sign that his body is beginning to manage fluids better - woohoo! Further, a seizure med was increased with hopes of weaning him off of another.

But probably the biggest and best news is that Josiah's trachea isn't collapsing any more!! Yay!! He had a bronchscope at his clinic and even though he was coughing fiercely through the procedure, it was clear that his trachea is strong and improved! Praise God!

We received Josiah's leg/foot braces and he wears them 1-2 times a day. It's very noticeable when we miss a day so we stay on it. While we haven't noticed a big change in his feet, it's pretty obvious that his legs are getting stronger and straighter, and he's standing up (assisted) better than ever. His core strength is also improving, and is demonstrating a lot better balance, able to maintain a sitting position with minimal support.

He definitely growing up - he never wants to stay still! Just a wiggle worm, and often ends up sideways in bed. Marie is convinced his favourite movie is Hairspray (it's on in our house almost everyday!), and we've introduced Josiah to finger painting (a pretty messy activity which - to be honest - I avoid!!)

Also, he's trying harder to talk than ever before! He's getting out the odd "AH!" which is very exciting. In fact, he was so loud in church a couple weeks back that we had to send him down to the nursery because he was being heard on the stage while we were sitting in the back!

Right now Josiah might have a bit of a cold bug - sticky, thick, colourful goobers! So you can pray that he stays healthy. He's also had a couple seizures this week, which may indicate that he's a little sick. He also seems to have chronic ear infections (just finished a round of antibiotics again last week), so you can pray for healing there.

Prayer Requests:
~ Health (fighting a cold?)
~ Chronic ear infections
~ Seizure med increase/future weaning of one seizure med
~ Improved balance and strength
~ That he'll continue to grow in his ability to communicate (hands, voice, & eyes)

That's all. Blessings.
- Andrew, Marie & Josiah

A Josiah Update - January 2nd

2009-01-02T07:35:00.000-08:00

Sigh. Updates are so easier when I remember to write them every two weeks ... :)

Well, where to begin with it all, eh? We were grateful beyond words to have Josiah home for his 'first Christmas'! I suppose that in itself would be enough of an update for us as parents because it is a demonstration of how far things have come in the past year! A year ago Josiah was on the mend from a near-fatal aspiration/chest infection and we didn't know what the future held ...

Christmas was full of visits, friends, family, gift-giving, and snow! Marie and I felt quite spoiled with all the love we experienced throughout the seasons - thanks all. Josiah got to meet a horse close up and even lay in the snow for a bit, which he thouroughly enjoyed until he put some snow on his face! Marie and Josiah (and subsequently I to a point) were sick here and there. Marie had bronchitis for 3+ weeks (still getting her energy back) and Josiah was fighting off something, and currently he has an eye infection (both eyes) which has really improved after only 48 hours.

Continuing with health, Josiah has seemed to lost his appetite and we're trying to figure out what the means. He rarely refuses a bottle, but for the last 3 weeks he hasn't been interested and we've been needing to G-Tube him for every feed (we'd typically just use the G-Tube for just his nighttime feeds). We're trying to determine if it is related to a food allergy, a change in his diet (we were adding a higher-calorie formula to his food), or if it's because he's feeling discomfort from his 'mucus balls.'.

Mmmm ... mucus balls. Josiah has been generating more phlegm in the last month and Marie & I were always under the impression that this was normal for trache patients. Josiah has been puking up these mucus balls at least once a day (up to five times a day, like yesterday) because it is obviously discomforting and affects his ability to digest food properly. But after a few calls around checking in with the dietician and respiratory therapist, we're pretty certain now that it's a virus that generating all these goobers that he's swallowing. No fun at all. Definitely provides a challenge, anticipating them and protecting Josiah from aspirating (not too mention, trying to keep up with the laundry and carpet cleaning!) and it makes him completely exhausted afterwards.

Most of the time his lack of appetite and puking doesn't interfere with his day and he's still pretty happy, for which we're glad. He's loves taking 'steps' and his legs/feet were casted during the first week of December and we're expecting his braces and walker in January - woohoo! Josiah is also really improving in his posture and torso control. He can remain sitting on a couch by himself, and he's now able to pull himself forward - a huge big development of the last 3 weeks! One of the funniest 'development' things he has done recently: Josiah one day purposefully 'fell' out of his seat onto the floor, landing in a perfect crawl position! Marie freaked out, but Josiah liked it so much that he did it 3 more times that day!

Lastly, this month we'll be orientated two new nurses! We're grateful that Bayshore is continuing to try to get us the night coverage that we're asking for. Right now it looks like we'll have Monday-Saturday nights covered - woohoo!!

That covers the highlights of the past month. Thanks for all the prayers and support along the way. I'll sign off with a few prayer requests if you're interested:
~ mucus balls: that he'll get over his virus and that he won't aspirate when he pukes
~ appetite: that we'll figure out why he doesn't feel like eating
~ walker: that he'll adjust well to his walker and that it'll open up a long list of possibilities for him!
~ energy, strength, wisdom, and health: for all three of us!

Grace & Peace.
- Andrew, Marie & Josiah

A Josiah Update - Pictures

2008-12-31T18:04:00.001-08:00

Here are a few pictures from the last couple of months. A proper update is coming (sooner than later!)

Some shots of family time ...

(Hanging with Daddy ... Nov 4th, '08)

(Gruncle Ron, Meagan, & Grauntie Betty-Lou ... Nov 3rd, '08)

(Grauntie Lydyia & Kellie ... Nov 3rd, '08)

(Story time with Grandma Haak ... Nov 1st, '08)

(Mommy & Grandma Neufeld ... Nov 11th, '08)

(Grandma Neufeld & Uncle Wes ... Nov 11th, '08)

(Swapping hats with Grandma Neufeld ... Dec 3rd, '08)

(Sharing a laugh with Mommy & Grandpa Neufeld ... Dec 3rd, '08)

(Great-Grandma & Great-Grandpa Haak ... Dec 7th, '08)

Josiah thoroughly enjoying his time in the leaves at Mill Lake on Oct 26th, '08 ...

Finally, a series of pictures from our Nov 16th '08 'photo-shoot' which netted our Christmas card picture this year ...

Happy New Year Everyone!

Grace & Peace.
- Andrew, Marie & Josiah

Later Tuesday Night - A Josiah Update

2008-11-25T22:12:00.000-08:00

Some good news.

Josiah's neurology doctor called this evening and through the conversation Marie and her were able to figure out that his Dilantin (seizure med) levels were way low. Unfortunately it's been that way since his last bloodwork (Monday the 17th) and no one reviewed his lab results :(

But on the upside, we're bringing up his levels and he's already showing major signs of improvement. Basically he spent the weekend in drug withdrawl - never ever fun - which was compounded by the fact his seizures flare up through periods of withdrawl - double gross.

Thanks for your prayers. We're praying and keeping our fingers-crossed that he'll have a good nights sleep and be back on track tomorrow.

Grace & Peace.
- Andrew, Marie & Josiah

Tuesday Night - A Josiah Update

2008-11-25T18:05:00.000-08:00

Hello Folks

Just a short blurb to post here.

Josiah has a had a weird/rough weekend. It started with a mini-aspiration Saturday night, which was cleared up by bedtime through suctions, chest physio and some prayer. But he had an absentee seizure through it all and ended up having 8 on Sunday, and about 6 yesterday. These seizures are different from his normal convulsions because they happen while he's awake it's like his brain freezes for 5-10 seconds (lights on, but no one's home - stiff and not breathing).

He re-coops rather well, but the seizure is usually broken with a cough/puke which isn't so fun. Further, this large amount of seizures has really messed up his internal clock and he has been sleeping in just short spurts (only 3-4 hours last night - thank God for a nurse to watch him so we can sleep!)

We've boosted a seizure med and are compensating with some electrolytes since he's had diarrhea all week. He doesn't really have an appetite, but all in all he's been in a really great spirits, with bursts of energy and has been mostly quite content so we're not exactly sure what the problem in.

So prayer for healing, understanding, patience and energy would be appreciated!

Toodles.

Grace & Peace
- Andrew, Marie & Josiah

Late Saturday Night - A Josiah Update

2008-11-22T23:22:00.000-08:00

Hey, this is another post - significant improvement this month!

Just a few things to note and be grateful for:

We had our air quality tested last week as we're trying to solve why the filters on Josiah's ventilator and suction machine are turning grayer faster than they should. This started being a problem as autumn settled in. The good news is that there's nothing in our building that we have to be concerned about: the structure is healthy and Marie (with her respite helpers) does a great job of keeping the place clean. The bad news is that we haven't been able to isolate the particle that is showing up on the filters. In the case of the ventilator, it's really weird because the air has to pass through another filter before reaching the one that is going gray. But the really amazing part is that the air quality tester opted not to charge us for his time, just the lab results - a saving a $300!! Wow! That was a big blessing: thanks Chris.

A couple of days ago Josiah took his first steps!! Marie has a physio exercise for him where he stands between her legs as she sits on the floor with her knees in the air. Josiah supported his own weight (she just uses her hands to give him balance) and he took three steps all on his own! Yay! We're really excited, especially since we found out this week that he's going to be fitted for foot/leg braces in the beginning of December and will get his walker sometime in January. So rad.

Marie and Josiah were also in for check up at BC Children's this week. Everything is looking good and Josiah's ventilator pressures have been lowered from 18 to 16 because he is demonstrating that he can handle his airway much much better. Incredible.

Finally, another 'Praise God' to note: we think Josiah must have aspirated on a little saliva/mucus today during trache ties (yes, he is unfortunately a monster now for his ties - a little too smart for his own good as he approaches the terribles two's). It didn't take long for him to be coughing a lot, elevated rate of breathing and heart rate, sleepy, etc. We caught it late (during dinner really with our guests - yikes!) but we prayed, did a lot of suctioning and chest physio, and Josiah was finally able to bring up everything that was stuck down there! Whew. He ended the night on a very good note, laughing uncontrollably as mommy and daddy made silly noises and tickled him all over ;)

Further, he's demostrating a new side of smartness which is becoming a gateway to a whole slew of potential dilemmas: when his nightlight musical aquarium turns off, he does what he can to get our attention in the next room. Tonight, he disconnected himself from the ventilator! Argh!

In Hope & Expectancy
- Andrew, Marie & Josiah

Sunday Night - A Josiah Update

2008-11-16T23:27:00.001-08:00

Hello Folks

Just a short little blurb here to pass the time before I fall asleep in Josiah's room. Life has been pretty good here in the Haak household, busy busy busy but good. Josiah has had a good couple of weeks. His secretions are thicker and more frequent then in the summer (I may have mentioned that already in the last post), but that's probably a seasonal thing - autumn is just mean for people with traches because filters are never as good as the parts that God gave us. But he's a trooper and handling it mostly well, though there are some days when they are so thick that he screams because he is scared or has to throw up because he has ingested too much mucus (probably didn't want to hear that!)

Josiah is definitely strengthening his legs, to the point where he can push himself up from a crouched to a standing (if we're helping him balance himself). His seizures are minimal which is exactly what we wanted to see. He still gets the odd seizure, especially is he is really exhausted or on the cusp of getting sick, but it has become infrequent and quite managable, a big answer to prayer.

His airway is also getting much stronger. If there is a moment where he needs to 'do it on his own' without the ventilator, it doesn't even concern him - so AMAZING to see! We're excited to attempt at weaning him off the vent in the spring.

See, it was short!

Thanks for rooting for us and praying for us along the way.
- Andrew, Marie & Josiah

Josiah Update - Pictures

2008-10-27T14:45:00.000-07:00

Video AND pictures this week - what a treat!

(a special visit with Joe, April & Moriah ... September 16th)

(the 'MoJo' Moriah + Josiah ... September 17th)

(sharing a laugh with Trina ... September 5th)

(some mommy time ... September 30th)

(nap time cuddles with Uncle Wes ... October 2nd)

(a special visit with Auntie Emily & Uncle Morgan ... July 31st)

(enjoying a good read with Uncle Morgan & Auntie Emily ... July 31st)

(hanging out with the cousins, Katie & Gracie...September 20th)

Enjoy!
- Andrew, Marie & Josiah

Josiah Video - Playing on the Swing

2008-10-27T11:43:00.000-07:00

Yay for video! Marie and Kelly (youth and respite giver) took Josiah to Mill Lake on Sunday. It's not his first swing ride, but certainly his best. It's long (sorry, don't have video editing software yet) and you'll have to spend the first bit at an angle until Marie tilts the camera back. Warning: squeaky swingset! Don't have your volume cranked!

Enjoy!

Monday Oct 20 - A Josiah Update

2008-10-20T12:04:00.000-07:00

No news for so long! It feels like I just wrote up an update but obviously its been weeks. A lot of has happened during that time so I'll do the best I can to be brief yet thorough!

Josiah has been completely weaned off two of his seizure medications, Tegretol and Phenobarbital - yay and praise God! Through the weaning process he certainly had his off days due to withdrawl (seizures, irritability, etc) but he's been so excellent in the last week - I don't think he's a had a seizure at all. Being off Phenobarb and Tegretol has been so great because they acted as inhibitors and now he's much more interactive and alert. He's still on three seizures meds, but we're moving towards getting rid of another one (Dilatin) which would be FANTASTIC becaue it is triggering painful cysts where his molars are trying to grow in - 2 big blisters that have lasted for months!

Josiah has also been receiving a lot more physio. We felt that once-a-month appointments were holding Josiah back so we have moved to once-a-week. He's loving it! He's learning to lean over an ab ball (with support) and he's pushing himself up and standing! We can brace him in a standing position and he's trying to walk which is so AMAZING to see. He's also bracing himself much better and is learning to use his arms/elbows to balance when in a supported sitting position. The biggest news is that he's going to be fitted for feet/leg braces early in the new year and will be given a trike walker to get him walking - Woohoo!

Last Saturday Josiah had an aspiration (a cough that failed to clear properly and so some meds/fluids ending up in his lungs). We were able to act quickly with chest physio, instills, suctions (plus a lot of his fierce crying!) to clear the goobers from his lungs. Within an hour his lungs were better, but we still went to the Abbotsford hospital (ARH) for a confirmation x-ray which showed that his lungs were great. Praise God!

Thanksgiving was great. Josiah got to see both sides of my family in the same day and he was spoiled with attention. Get this: he woke up at 5 AM that morning and went to be around 10:30 PM, sleeping a total of 40 MINUTES the entire day! Boy he was wired, he likes people too much. The highlight was having his great-grandpa Martens hold him for the first time (Marie nicely FORCED Josiah into his arms and Josiah loved it!)

This past Saturday Josiah returned to ARH and spent 30 hours there with a chest infection (pneumonia basically). Thankfully he never entered a critical stage, but it could have easily gone that way if it wasn't for quick assessment and prayer. Saturday morning Josiah's heartrate was 200+ at rest (at 70 beats higher than normal), but thankfully his sats was strong and he didn't need oxygen. We took an ambulance ride to ARH (my first!) where he ended up being admitted.

It was a HUGE BLESSING to be able to stay at ARH and not be transported to BCCH. The staff were great and very accomodating, and the ped unit was really nice. They are working at being prepared to take trached and vented children, but it's going to be a slow learning curve. Our stay was hinged on the condition that either Marie or I or one of Josiah's respite givers was at his bedside all the time, which we were very excited to do. Thankfully they were all wonderfully curious and interested in observing and learning from Josiah. A few even dropped by to watch Josiah's trache change! We're hoping that we can continue to develop a relationship with the staff there, using Josiah as a bit of a training opportunity for them and so we'll see what the future holds.

Josiah was treated with a pretty aggressive antibiotic and within hours he was already looking and feeling better. He had one dose via IV, but he lost two IV lines (pudgy hands and rolls get in the way!) so he took two doses of antibiotics via inter-muscular (two shots to the legs). Painful, but it's all done in 12 seconds. It was a blessing to be treated via IM and not IV because it allowed him to discharged a day early! He was pretty excited to leave the hospital room (hard mattress) and get back to something familiar and comfortable. He continues to clear his lungs well and he'll be on antibiotics for the rest of the week. Thanks for your prayers!

We're looking (hoping and praying) that we can wean down some of Josiah's dependancy on diuretics. 4 diuretics are a lot and it can do a lot of harm to his body long-term. Our next scheduled clinic at BCCH will cover some of that and hopefully his body will respond favourably. We'll have to wait and see.

So all things considered, Josiah is loving life. He continues to go on a lot of walks out to Mill Lake, goes on the swings and slides, enjoys meeting other kids and loves dogs. Dogs seem to really like him and they've always been really gentle around him which is so special to see. He even a little dog sit in his lap for 20 minutes last week, to the point the dog was so comfortable it was trying to fall asleep ;)

That pretty much covers what has been going on in the last few weeks. Below I've listed a few prayer requests so that you know how to pray for us in the weeks to come.

On-Going Prayer Requests
~ Basic health, especially during cold and flu season
~ That his teeth will come in without pain and that the interferance of his med would subside
~ That he will manage the proposed seizure med weaning well
~ That Josiah's diuretics can be weaned down without dire affects
~ That his muscle tone, strength, and spine will continue to improve to allow him more mobility and the ability to sit, crawl, stand, and walk!

Thanks for your faithfulness, encouragement and love!
Grace & Peace
- Andrew, Marie & Josiah

Saturday Afternoon - A Josiah Update

2008-08-23T16:09:00.001-07:00

Hello Josiah Followers!

Almost a month without a post! New record! If you think that is bad, my other blog is in even a further state of neglect.

The summer has been busy. Not having legitimate internet access at home ('borrowing' the free airwaves from time to time!) has contributed I guess to the fewer updates, but all in all it's just our family getting into the routine of life. It's a good sign I suppose that we're not writing about Josiah as much as we used to, because it reflects the reality of being home and facing fewer crises. With a steady flow of nurses, support staff, friends, and family going through our home all summer (this week I think we hit the record with 11 people in our home at one time!), grappling with unusual sleeping patterns (and snagging naps when we have the time!), getting used to all the 'work' that surrounds the basics of Josiah's day, it's been a very full and rewarding summer.

So what can I say about my son? He's growing, over 32 inches long and almost 30 pounds. He's becoming a 'wiggle worm', finding ways to move which is making even the simple tasks more interesting now. We're scolding him more during trach ties because he refuses to stay still and he's doing his best avoid having his nose wiped. He outgrew his 'high chair' but that was adjusted this week to his size. That piece of equipment is the absolute best this for him: it allows him to interact with people in an upright position, playing with toys and even doing Wii bowling with some assistance!

An additional piece of equipment that we started using a few weeks ago is a form pillow that inflates and supports his back while he sleeps because he has developed a poor sleeping position which is straining his neck and back muscles. He's gotten used to it (it's kind of like cuddling up to a blanket-covered brick) and will sleep in it for up to 6 hours at a time.

Josiah is handling his phenobarbital (seizure med) decrease very well. In a few weeks he will be weaned off it completely! Yay! So far we haven't run into any problems with bringing lamotrigine on board (another seizure med) though we sense it's causing him to have a constant runny nose and be more prone to vomiting.

It's great watching Josiah learn, whether he is reaching for food, his Wiimote, or responding to being tickled. He's so close to rolling over, but is much better at moving from side to side. He still is dabbling with solids and is working on biting through fruits and veggies. He kicks like never before: we roll Marie's ab ball up to him when he's in his chair and he boots it around!

Health-wise, Josiah has had a few challenges over the last few weeks. He had a outter ear infection which spread to his neck, and that turned out to be MRSA. That was treated with cream and ear drops (and Marie used some diluted oil of oregano in there as well), but an inner ear infection returned about a week later and that has been causing him a lot of discomfort. We went to a wedding last Saturday and the heat caused a nasty contact/heat rash to form on his neck which got a little infected. We treated that with creams again and his neck is great again.

On top of the ear infection (which he is still taking drops for and oral medication), he's got two cysts in his mouth where some teeth are trying to come up, bulgy blue blisters that hurt and so he's on Tylenol here and there to help him cope with that pain. Marie had to walk Josiah to emergency yesterday because he would not stop crying. He actually had to be sedated for the first time since being home because he couldn't stop crying and Marie wanted to prevent him from having a dying spell. She sensed that his lunger were wetter than normal, and so she went to the hospital for a quick check up. His bloodwork showed that he is fighting something, so he's antibiotics have been extended for a few more days. Thankfully, he had a great night and a great day without any pain or fuss. What a trooper.

Next week Marie and Josiah are back at BC Children's for his regular follow-up with the Ventilator doctors and Neurology. They are also are going to stop in at the dental clinic because one of Josiah's seizure meds can cause gum inflammation and with his teeth trouble they want to make sure nothing is missed.

On the nursing side of life, July into August was hard because we had no night nurses for 2 weeks. We have 3 nurses in total, and on average for September it looks like we'll have 4 nights and 3 days covered in a week, for which we are grateful. We had a stint here in August of 8 nights straight of coverage - Marie and I almost felt normal!

Some other firsts: Josiah had his first dip in a pool a few weeks ago at my Aunt and Uncle's place (Marie is teaching some private swimming lessons there), he attended his first wedding, has gone down a slide and went on a swing at Mill Lake, and gets ridiculously excited for Wii bowling (best score for the moment is 164).

I'm sure there's little bits that I have forgotten, but that will hold you over for now! Hopefully I won't keep everyone waiting so long next time. I'll also look on our camera to see if there are any recent pictures to upload.

Til next time, thanks for the love.
In God's Grace & Peace.
-Andrew, Marie & Josiah

Tuesday Afternoon - A Josiah Update

2008-07-29T16:57:00.000-07:00

Greetings Online Sojourners!

I figured I better write something here before I really run out of time.

So last thing I posted was that Josiah had spent a few days in BC Children's because of some unknown virus. That has totally cleared up, but life is anything but 'normal' or 'predictable'. In fact, I'm quite settled on the fact that Josiah will be predictably unpredictable for a while. Just part of being handsomely complex.

How about I start with the latest and then fill in any other tid bits that come to my mind? Last week Josiah had his regular follow-up appointments at BC Children's with neurology (seizures specifically) and respiratory/ICU. Our seizure doc is uncomfortable with the number of siezure meds Josiah is on (yay!) and so we're in the process of weaning him completely off Phenobarbital (an 11 week process at minimum), which we are really glad about because Phenobarb is just a nasty drug to have in your system long term. A number of parents have told us that taking their children off Phenobarb was the best thing for them, it just happens to be one of those 'go-to' drugs as it relates to seizures. The process will be slow because the body gets quite addicted to Phenobarb, and we can expect 'withdraw' seizures, but so far so good!

Josiah also showed an ear infection around the same time. We started ear drops that night, but the following morning he had unusual pimples/rash around his neck and we concerned that the infection had spread (we knew his ear infection was staph aureus). So we had to make a second trip to Vancouver and picked up some cream treatment. It was confirmed the following day that the rash was indeed staph aureus too, and unfortunately the cream didn't clear up the staph and it was noticeably worse today because it was actually MRSA, not just plain ol' staph. Josiah had picked up MRSA while at his stay in BC Children's (one of those unfortunate things about staying long term in any hospital) but this was the first time it was an actually infection (previously it has just been cultured on his skin with no dire effects).

Thankfully, though, for the moment we have avoided a stay at BC Children's. Our doctor has prescribed a different cream for Josiah that should clear up the MRSA, but if that doesn't work there are a couple of oral options before we have settle with an IV drip (which would mean a few days stay at Children's). The real complicating factor in this is that Josiah is allergic to one of the 'go-to' drugs for MRSA (sulfa, a common antibiotic used to treat many things) and that one of seizure meds (Tegretol) has a lot of negative drug interactions, limiting our available options. For example, the ear drops cleared up his ear infection really quickly, but the oral variety of the same med interacts with the Tegretol, which is one the many reasons we'll be getting rid of Tegretol after Josiah is weaned off Phenobarb.

So we pray, stick to the game plan, and wait for this cream treatment to work, praying that Josiah will heal up, that the infection won't spread, and that we can avoid another hospital stint.

In other things ... well, let's see. Josiah for really the first time yesterday used his teeth to 'gnaw' at his food. He really enjoyed eating his apple. We have a mesh feeding 'thing' that allows Josiah to chomp on solids but only the juices get into his mouth. LOVED IT. He was kicking so hard that he was pushing his chair back when he braced his foot on Marie's leg! And he didn't mind the ketchup and mustard that we allowed him to sample ... :)

Josiah last week started on a new formula which is geared towards children. Not soy but cow's milk without the lactose. And it's vanilla flavoured so it covers up the sodium we add and the soy that is mixed in (we do half-and-half infant and child formula to ease his transition and use up the old stuff we have in stock). We think this new formula is more filling because he isn't as hungry, but he could also be done his growth spurt which is totally fine.

Josiah had another physio appointment last week, and showed great progress. He also changed his sleeping position on his own for the first time (I don't know if I mentioned that in the last post).

We've had a more difficult week because we've been without night nurses for what will be 10 days straight (even nurses need to take holidays), but August is INCREDIBLE for coverage, including 8 days in a row when Marie and I get to sleep together! We'll almost feel normal after that week!

That's all that I can think of right now. Toodloo.
- Andrew, Marie & Josiah

Friday Night - A Josiah Update

2008-07-11T21:47:00.000-07:00

Hi Everyone

Our church just wrapped an incredible week of VBS and now I finally have the time to put up a few thoughts!

Some of you may have heard that Josiah had to go back to Children's Hospital for a couple nights this week. He had been fighting a fever for a few days and no amount of Tylenol or Motrin was bringing it down. Late Tuesday night he ended up having a severe seizure to the point he wasn't breathing on his own for 30 minutes. Thank God that our kid is trached and vented!! (OK, most parents wouldn't probably say that ... ) Anyways, the long fever obviously stressed his body to the point where his mind couldn't protect itself.

To complicate matters, we had started a new seizure med the previous week which totally changed the manifestation of Josiah's seizure. Usually his seizures have been 'tremors' in his sleep. This time he was quasi awake and just froze, not breathing. After a few minutes he would move and 'respond', but still wasn't breathing on his own and obviously still in the seizure. But we have a ventilator and oxygen for a reason and his vitals were well maintained despite the freaky nature of things.

He ended up being taken to MSA via ambulance - we had three emergency vehicles and 6+ attendants at our home! - where he was treated and stabilized. The seizure finally stopped after about 2 hours, around 1:30 in the morning. He was at the time also able to breathe on his own without oxygen and the ventilator rate. Later in the morning he was transported to Children's and spend the next couple of days there.

Strangely enough, nothing showed up in the tests the doctors ran. Blood, urine, stool, and trach aspirate samples were all checked 2-3 times and no viruses or bacteria was found. The only thing that stood out was that Josiah's white blood cell count was up, so it was obvious he was fighting a virus.

Marie and Josiah came home this afternoon. We've started yet another seizure med (the one given to him at MSA which stopped the seizure), but also weaning off a second seizure med because it does the same job the new drug does. Thankfully, Josiah was completely stabilized and not in any danger after the initial seizure was stopped. His stay at Children's was pretty uneventful and boring because he couldn't leave the room, but it's good to know he was recovering so well. His fever has been gone since Wednesday and he's more or less himself. Tomorrow will be great day after he has a long night's sleep in his bed!

Thanks for your all those who prayed and expressed their concern. Reflecting on the last couple of days, it was nice knowing that this hospital term wasn't a crisis, just one of those things Josiah may run into here and there. An emergency, yup. But not a crisis (if that distinction makes any sense). Any-who, I was comforted by the lack of stress or fear I had during the initial ordeal. Josiah's condition could have invariably been on the bubble so to speak and could have easily worsened if a few factors had changed, but that's the same with everyone if you really think about it.

When people ask how we deal with it, I've come up with a simple answer which seems to be my 'go-to' for the moment: "God knew what he was doing when he made Marie and I the way he did." It's not a pack-myself-on-the-back kind of response, just a confidence in who we are and how God prepared us for life. It's seems accurate enough.

So that's that. Time to sign off and spend sometime with the family.

In Grace & Peace.
- Andrew, Marie & Josiah

Josiah's TV Spots

2008-07-04T14:59:00.000-07:00

Hello Everyone

This past week my aunt sent us a DVD of all of Josiah's TV appearances! Unfortunately, this site limits the size of files that I can post on the blog. Instead, I have uploaded all three videos to my Facebook profile. Head over there if you previously missed Josiah's TV debuts!

Toodles.
- Andrew, Marie & Josiah

Josiah Update - Pictures

2008-06-19T18:42:00.001-07:00

Josiah resting on June 7th ...

Josiah with our friend Leanne on May 8th ... the "Cuddle-er"

Josiah with our friend Ryan on June 10th ... the "Multi-Tasker!"

Josiah on June 9th ... showin' off his trucks and new chair

Josiah on May 30th ... a slight resemblance!
(and boy does he look confused ...)

Josiah on May 18th ... precious naps on a sunny day

Josiah on May 18th ...

Enjoy!
- Andrew, Marie & Josiah

Thursday Evening - A Josiah Update

2008-06-19T18:17:00.000-07:00

Hello Everyone!

Thanks for understanding how it's just easier for me to post updates here and there as I can. It's funny, from day to day there doesn't seem to be much to pass along, but as soon as I start jotting down ideas I realize I'm committed to another lengthy update.

So where to begin? Josiah continues to excel at home. It's difficult trying to provide him structure and schedule because from day to day some many different things may change. We aim to give him routine, but with all his meds, the cycle of friends and nurses, and the fluctuation of temperature, it's pretty difficult to provide him a normal despite our best efforts. We're hoping that as soon as his meds are balanced out (weeks?) things may improve.

That said, Josiah only took one nap yesterday (30 minutes at that!) and did great - a big first! Speaking of big, Josiah has climbed up to 27 pounds, putting on 2.5 pounds since coming from the hospital. His head circumference has maintained as well - Praise God! - and we're so excited that his 'body is catching up to his head'! :D

We're still working on getting his seizure meds to the right level and getting rid of one completely. We're hoping that we'll be able to start weaning off his unneeded seizure med by next week. As far as seizures go, Josiah has certainly had less (2 in 2+ weeks?) and they - in our words - are the best seizures he's had since coming home (small, spaced apart, and don't leave him in a clammy sweat afterwards).

We continue to meet with our support team at BC Children's every two weeks (mostly in part to follow up with his seizures, respiratory, and water-management issues). It's reassuring (it a way I suppose) that the doctors and nurses are just as baffled about what to do about Josiah's water retention as we are, so we do the best to manage with strict fluid intact and basic intervention if we feel he's dehydrated.

It appears that Josiah may have seasonal allergies. For the last few weeks his cough has been more of a wheeze (making it difficult to fully clear his airway) and sometimes he breathes a little harder. We have a 'puffer' on hand that helps out a lot on those days. It could also be a dust issue (hospitals tend to be less dusty!) and we're looking at buying a fancy-shmancy vacuum cleaner to make our dust-free (or as close as can be, right Ryan?!)

It could also be that Josiah's trachea is getting wider, a strong possibility since he's getting more and more 'words' out every week (more like strong whispers of air or the odd "AH!" when he has hiccups!!) If his trachea is wider, than more air is likely to pass the trach and out the mouth giving a 'wheeze sound' during a cough. One of the things Josiah has really enjoyed of late is 'singing' when someone is playing the piano (he'll straighten right up, eyes wide, and start making noises - so cute!). I also had him try playing my djembe yesterday and he was very interested.

Further, in the development area of Josiah's life, Josiah is enjoying sucking on solids (pickles, peppers, celery, and carrots) and had a little bit of pablum yesterday. We're proceeding slowly and with caution to see if we can add solids to his diet on a regular basis - how exciting! A few weeks back he also had some orange and lemon sherbert and he makes THE BEST faces as he's trying out these new foods! He's also tried a few new drinks recently: orange juice, apple juice, but his most favourite - and I'm not even kidding you - is coffee. Atta boy!!

Lastly, we are orientating our third and fourth home-care nurses. Woohoo! We feel pretty privilged that these individuals are making time to take care of Josiah. Further, three of the nurses are Christians and so we feel double-blessed to have them in our homes with our family.

In a few weeks Josiah's story will be added to the Miracle Kids section of the BC Children's website. I'll let you know when that goes up. And Josiah's story will also be hitting mailboxes again in the fall going out to people throughout BC who have donated to BC Children's Hospital. If we get a copy maybe I can scan it and post it here.

Thanks for your faithfulness to us in your prayers, thoughts, and warm hospitality. It's good to have you behind us.
- Andrew, Marie & Josiah

A Josiah Update - Friday Afternoon

2008-05-30T15:02:00.001-07:00

Hi Everyone!

I have Miracle Weekend times for this Saturday (May 31st) and Sunday (June 1st).

#1 - Our interview with Elaine Yong will air Saturday evening @ 10:39 PM.

#2 - Our "thank-you blurb" will air Saturday evening @ 9:54 PM and Sunday afternoon @ 1:13 PM.

... if anyone wants to record it on our behalf that would be great (still haven't purchased 'rabbit ear's or ordered cable!)

Thanks for all your enthusiasm!
- Andrew, Marie & Josiah

Josiah Update - Pictures

2008-05-29T18:12:00.000-07:00

Josiah's Bedroom ... the awesome Canuck colours!
(I love my wife!)

Josiah's Bed ... other side has a bookshelf along the top and drawers along the bottom

Josiah's Bed ... with the plexiglass in place all we need is an 'ice rink' bed sheet and Josiah's bed comes an arena!

May 6th ... Josiah leaves the hospital and says 'Good-bye'
to Grandma at the airport

May 7th ... Kelly, Cindy, Patty, Trina & Timmy come over ...

May 7th ... Mommy is shocked by Josiah's mohawk
(compliments of Kelly)

May 8th ... tired but jubilant!

Grace & Peace.
- Andrew, Marie & Josiah

Thursday Afternoon - A Josiah Update

2008-05-29T17:07:00.001-07:00

... 'bout time eh?!

Finding the time to update these days is getting harder and harder! Life is just full: busy, joyful, long, exhausting, exciting ... full! We barely have enough time for sleeping and eating, let alone catching up on email or reading a book. Here's some tidbits of news and events from the past couple of weeks.

Josiah continues to do well, but is probably in the middle of a cold right now (something similar to what he had 2 weeks before he was discharged from the hospital). Noticeably he has to work harder to breathe sometimes through the day, but we got an inhaler to help him out. Thankfully - Praise God! - he hasn't needed any oxygen or increased ventilator support through this, a big big blessing and a sign that he's growing up.

Josiah has also had a few seizures now since coming home, but we're managing them just fine. The potential causes of the seizures are plenty, but it's who he is and we're slowly working towards getting the right seizure med levels in his body. You can continue to pray that he brain will develop and with the help of these meds that he'll be able to move past these seizures.

We've got nurses! YAY! We have two amazing nurses that come in each week for 3-4 shifts. That means Marie and I get two nights of sleep and some help during the day - woohoo! And it looks like we'll have a third nurse joining us mid-June so that means we should get sleep every Monday to Friday - WOW! ... and to clarify I suppose: Marie and I can sleep when we are watching/taking care of Josiah through the night. It's just on the recliner in his room and not with each other!

This past Saturday we drove out to Aquadel Golf Course (near Cultus Lake) to be pre-taped for the telethon that is going on Global this coming week. We've been told our 2-minute interview will be on Saturday (May 31), but we don't have a time yet. If I'm told the exact time before Saturday I'll post it, but otherwise you can just take your chance and try to catch us on TV. If someone wants to record it for us that would be sweet! (we don't have TV).

So far we have three incredible friendswho have completed their trache care and ventilator training through BC Children's - and more who are planning for it - so that they are now able to provide respite care for Josiah. We are so blessed! Marie and I really enjoy having them around, hanging out with them but also handing over our son for a while to catch a break!

We were completely surprised to have a brand new air conditioner donated to us this week. The new place cooks in the summer heat and we noticed the difference AC made within minutes. Also, Josiah visited someone's house for the very first time this week - my aunt and uncle's out in Mt. Lehman. Such a fun memory maker!

We're praying and hoping that we can get to know some of the people in the condo soon. Though we've had a steady stream of visitors coming in, we still miss Arnold and the whole community-feel. We've already met some nice folks and hope that we can establish some friendships along the way!

That's really all the news of the past couple of weeks. I know it feels like forever since I've logged on here to write something, but we're settling into a (CRAZEEEEE!) routine of life, taking care of Josiah, working, playing, visiting, bringing in nurses and repeat. And man, we make a lot of garbage: I never realized how Josiah's used supplies just add up!

Thanks for all your faithful prayers and thoughts.
- Andrew, Marie & Josiah

Tuesday Afternoon - A Josiah Update

2008-05-13T12:06:00.000-07:00

Finally! Something is posted!

OK, you can all imagine how much stuff I could write here to bring you all up to speed on how we've been doing and enjoying having Josiah home with us ... 15 months in the making! I'm not sure how long this entry is going to ramble on or what shape it will take, but bear with me as I shed some light on the month so far.

May 1st - we moved into our new condo with the help of so many friends from our church and family as well. Bless you all! We had a team of ladies cleaning up our new place and assisting Marie in getting the kitchen and bedroom together. We also had a group of guys who also had all our furniture moved over and in place within a few hours. This was in addition to the people who had helped us pack in the weeks leading up to our moving day, and the people who came in to clean our former home. Fantastic! It was such a fun day, made even better by the fact Marie's mom and sister drove out to be with us for a few days.

May 2nd - Marie, her mom (Nola), and sister (Emily) start painting Josiah's room and adjacent bathroom: Canucks blue, green and white! He's got the best looking room around! The painting is all completed by Monday, and the ladies also were able to get to spend some quality time with Josiah in the hospital.

May 5th - The hospital hosted a discharge party for Josiah so all the nurses and staff who have gotten to know Josiah along the way and cared for him were able to swing by and say their good-byes. Lots of cake, pictures and cuddles for our little man (OK, he just had some icing and no cake!). We also carted the last of his stuff out of the hospital room and our van was FULL!

May 6th - Josiah came home!! The day ended up being longer than we expected just because we had so many house and hospital errands to run, but we got everything into the van and apparently we appeared to be very organized (it was the second time in a week we had moved!)

Things were tricky because Josiah has SO MUCH STUFF and needs. Some of his supplies were ordered late or overlooked and we have been scrambling a little grabbing supplies from hospital to hold us over, but everything has come together really well. I think Purolator has come by our house already 6 times.

It was pretty surreal have Josiah in the house with us that first night. At the same time, it felt so natural and it 'fit'. Things went very smooth and Josiah has been absolutely stellar through it all. He's probably handled the transition better than his parents!

We are tired, but it an exhaustion based more on lack of sleep than anxiety and stress (which we have been living through for the last year). We give each other lots of grace since we've definitely had our grumpy moments this month! It feels more like being newborn parents and we've been loving it. Josiah always needs someone with him, but because he has two alarm systems (one on his ventilator and another on his oximeter) we can doze off in his room and know that we'll wake up if there are any problems. We also have a super-handy video monitor that we can take with us if we need to step out of his room for a moment.

Josiah's room is sweet (and we'll post some pictures here soon). The bed that was custom-made for him is amazing and we got a comfy recliner to doze off in throughout the night. Marie and I usually take shifts of 10PM-3AM, 3AM-10AM which has been going pretty well for us. The first week was full because our typical downtime through the day was spend on re-arranging furniture, emptying boxes, re-organizing - the typical moving in stuff that can drag on for months. But that is settling down now and it's easier for us to grab naps throughout the day as needed.

Like I mentioned before, Josiah has been doing great. We had his first clinic (hospital follow-up) yesterday and were able to have some of our questions answered and Josiah was looked over briefly. I honestly believe that clinic is more about checking up on the parents to make sure that they are doing fine and aren't too sleep-deprived than it is about the actual patient! Josiah had his first seizure in quite a while last night, but Marie was able to handle it and he eventually came out of it and was able to get a good night's sleep. Yesterday's events really broke up his routine and he had no nap at all, and that exhaustion led to his seizure. Other than than, no problems!

We have an amazing team of people at the hospital who will be following us and checking in every couple of weeks. We also have an equally amazing team of people who are taking care of Josiah on the home end of things, helping us order supplies, organizing nursing hours, and evaluating Josiah's needs and development. Further our church and family have been bringing over meals to help us get through this transition period. We are so blessed!

It appears that next week we'll finally have a few nights with nursing support. Because Josiah is on a ventilator, the nurses have to receive special training which takes place this week. We're excited to get to know these people who will be caring for our son! At the same time, it's going to be a great big learning curve figuring out what our life and home looks like with a nurse in Josiah's room for 8 hours a day (but that's usually going to be at night).

And Josiah continues to surprise us and show us new things. He did his first 'kissy face' on Mother's Day, but unfortunately he gave it dad and not mom! He also performed his 'toy transfer', grabbing his toy with his right hand and passing it to his left - awesome! He's definitely trying to so hard to roll over, and actually has been preferring to fall asleep on his stomach (a position we still have to help him get to).

He's also been loving the fact that he has his parents with him 24/7. The first few days he woke up in the middle of the night (probably because it was new environment and quieter) and he was so happy to see a parent there in the room with him that he refused to go back to sleep! I was able to take a week of holidays to help get adjusted, and today I'm back at work.

I'm sure there can be much more to say, but that's probably enough to go on for now. Thanks for all the prayers, love, thoughts, cheers, and support you've given us through this chapter of our life. You're welcome to continue following our journey as we are finally together as a family at home and discover our new norm. May God bless you all for your kindness!

In Joy!
- Andrew, Marie & Josiah

Late Monday Night - A Josiah Update

2008-05-06T00:04:00.000-07:00

One last note before I enter the week of internet silence (or whenever I call Shaw to connect us!) ...

So here we go! We are HOURS away from taking Josiah home and the only emotion I have is the "it's-about-time" emotion (if that makes any sense). We're ready. Tired. But ready.

Josiah's discharge party today was special. It was a nice gesture to have so many nurses and staff come by to share their wishes and to see us off. We tried to avoid tears altogether - I think Marie and I were too exhausted to be emotional and reflective - but it's hard knowing that these people we've seen almost every week are not going to be a part of our lives in the same way. We're going to miss them big time: they have played an enormous and foundational role in the last 15 months and they have changed our lives. God bless them.

For a while it seemed that Josiah was fighting a bug during the day - the common curse that falls up many longterm ICU patients as they are just about to be discharged! But his secretions cleared up throughout the day, he didn't need oxygen by the time evening came, and he definitely seemed more playful and alert after his post-party snooze. So pray that he isn't coming down with something because it would certainly make the first week home eventful in all the wrong ways!

We packed up most of his belongings from the hospital today. His bed came into today as well - WOW! We'll post pictures some time.

Thanks for all your continued prayers through this week - I know a lot of you will be praying for us some more as we transition home and re-discover again a whole new 'normal'. We found out today that we are even shorter than expected on nursing support, so we are praying that the program will be able to fast-track some LPN's so they can take the course this month and not be forced to wait until June.

And a final notes about home visits and stuff: I know many people will be interested in dropping by to see us and lend a hand as desired. We thank you in advance for your generosity! Please know that if you are thinking about dropping by you must give a call first, better even a day in advance. We have a handful of appointments over the next two weeks, but more importantly we are trying to avoid unannounced visitors in case we are out or sleeping (our sleeping schedule is going to be pretty funky over the next couple of weeks!) We're doing a big adjustment here going from public living to private, from '24/7 nursing-babysitting' to 'do-it-yourself-care' and we know that you kind folks will be thoughtful and understanding. Thanks so much!

In JOY and EXCITEMENT and CELEBRATION!
- Andrew, Marie & Josiah

Saturday Afternoon - A Josiah Update

2008-05-03T14:05:00.000-07:00

Greetings to All

This blog is certainly due for an update, though I get the sense it will be more of an update on us that Josiah specifically.

Josiah continues to do well. After having the cold a week (2 weeks? ... my mind is fuzzy with details...) ago he had a brief bout of 'trachitis', an upper airway infection which he got over in a couple of days without antibiotics. He's been back on the bottle over the last few days and still enjoys it!

Marie's mom and sister have come out to visit and help us with the move into our condo. The move on Thursday went super-smooth due to all the support we got from family and friends within our church! Just a huge blessing to have so many people lend their time and energy to us in that way.

Marie and her family are working on painting Josiah's room today (as my aunt said earlier, pink is just not a boy's colour!) It's going to take us a while to get used to the city traffic and 'condo noise' but it's starting to feel more like home and less like a hotel (this is coming from a guy who's lived in the country all his life).

Josiah is still scheduled for discharge on Tuesday, with a going away party on Monday in the hospital. We've gone over the house assessment with our community nurse coordinator and everything is good-to-go, but Marie and I will probably be without nursing support for 2+ weeks because no one is trained yet. So pray for our safety and sanity! Thankfully, a support team is coming together really well so within a month hopefully we'll be well taken care of. A big blessing: we've been approved for 48 hours/week of Community Life/respite care funding, meaning we have money to pay qualified 'babysitters' - Woohoo!

Thanks for all the prayers and the love. I'm not entirely sure when we'll have internet hooked up in our house, so next week (since I'm off work) may be lean on blog entries - my apologies in advance!
- Andrew, Marie & Josiah

Friday Evening - A Josiah Update

2008-04-25T19:06:00.000-07:00

Hello All

Just a brief note. Josiah has had a pretty good week, but seems to have picked up a bit of a bug here over the last couple of days. He had a trach change today and such, but right now the doctor feels Josiah has a common trachea infection that most trach patients get. If that's the case, Josiah will be able to get over it without antibiotics - nice. Encouragingly, Marie says Josiah looked better as the day carried on. Thankfully he hasn't need a boost of oxygen (still on room air), and his ventilator rates were increased only slightly to help him out.

Just so our visitors know, we have moved out of the big common room in TCU and have move to one of the side isolation rooms. Life there is so-far, so-good. It's hard being a little more out of sight of the nurses and really hard that we can interact with the other patients as well, but the there is a little more privacy offered in this setup.

Marie and I are planning to move into our condo next week Thursday. Josiah will then be joining us five days later - YAY!!

Something you can be praying for: most of you know that's a nursing shortage anywhere you look, and the same is true of community home care nursing. We have a few solid potentials lined up to take care of Josiah when he gets home, but they have to wait for ventilator training which takes place mid-May. As it is now, Marie and I will be providing all of Josiah's care for 2+ weeks at home without any 'nurse breaks'. There may be one nurse who could come in for short periods, but we'll have to see.

So as you pray for Josiah to get better, please pray that 1) Marie and I will have the energy and wits to care for Josiah in the coming month, and that we'll all be kept safe and healthy, and 2) that we'll receive the nursing we need throughout the year.

In 'Yay God!' news we unexpectedly received disability financial assistance for the past year: a very welcome surprise news indeed!

In Joy & Anticipation
- Andrew, Marie & Josiah

Monday Night - A Josiah Update

2008-04-21T22:55:00.000-07:00

Hi Folks

Sorry it's taken so long for me to write a recap of the weekend with Josiah - just so busy!

Our time with Josiah from Friday to Sunday was AMAZING!! Definitely the most incredible time we've ever had as a family! Josiah was an absolute pro-star and he loved it just as much as we did. I think he was pretty giddy about the fact he was able to wake up in the morning and have us there to greet him!!

Most of the time we just hung out in the room. After living in public for 14+ months, it was magical just being alone as a family for the first time ever. We did venture out to IKEA in Port Coquitlam and Josiah was excellent the entire time. Marie had the trial of changing his diaper in a public washroom (I can see how this is going to provide a lot of challenges down the road) and Josiah proved that he can handle a 30+ minute van ride while teething and sitting in a dirty diaper - awesome!

Because we have did pretty much everything for Josiah in the last few months, it was good practice for us working out a night time sleeping/watching schedule for the nights we won't have nursing support when we go home. We were also able to troubleshoot a couple of typical problems that would arise, and that also boosted our confidence.

Ultimately, Sunday was a very difficult day because we had to return him back to the TCU and not bring him home with us. We didn't want to leave, and it was hard handing his care back to the nurses when we know that we can do and had just a small taste of it.

So we're counting the days: 15 days until Josiah comes home with us!!

Thanks for the prayers and the cheering with us along the way.
- Andrew, Marie & Josiah

Thursday Evening - A Josiah Update

2008-04-17T22:16:00.000-07:00

Hey Out There ...

The next two days are big ones for the Haak clan. For the next two nights (Friday and Saturday) Marie and I are going to be the sole care-providers for Josiah as we participate in our 'Care By Parent Weekend'. We'll be given a room upstairs in the hospital and we will be without nursing the support the entire time to prepare us for what home care will be like. Pray for us as we work out the kinks, discover what works and doesn't, and figure out on-the-fly what going home will really be like!

God's Peace.
-Andrew, Marie & Josiah

Josiah Update - Pictures

2008-04-15T20:29:00.000-07:00

We have many family and friends that come to see us in the hospital, and I usually refrain from posting pictures of them online out of respect. But these folks have waived any concerns and so we get to share these recent images with you all!

Trina & Josiah in one of many cuddles
February 14th '08

Dara & Patty reading to Josiah
February 18th '08

The Born's come to visit!
(L to R: Doris, Dawson, Caslyn & Will)
March 6th '08

Daddy & Grandpa with Josiah's on his 1st trip to the mall!
April 5th '08

Our family on our mall excursion (a TCU tradition I'm afraid!)
.... no, we didn't buy any Play Mobil! (sorry, another inside joke...)
April 5th '08

"Hat Buds" with Grandpa Neufeld
April 5th '08

God's Blessings.
- Andrew, Marie & Josiah

Tuesady Night - A Josiah Update

2008-04-15T20:20:00.000-07:00

Hi All!

Marie and Josiah had their 90 seconds of TV fame today at around 12:3o! Apologies to family, friends, and followers who live outside of BC. I'm trying to find a copy of the telecast for our own memories, so if there are any techie's out there who can send us a copy that would be so awesome (so far BC Global TV online hasn't streamed it yet).

It was so AWESOME to be able to have Josiah accompany Marie! He still has his ear infection, but all in all he is doing great. Marie was able to share briefly about Josiah's syndrome, relate how a new family-based facility would be a great asset to people who are in situations like us, and was able to celebrate the fact that Josiah is coming home soon!

Thanks for the love.
- Andrew, Marie & Josiah

Monday Night - A Josiah Update

2008-04-14T22:29:00.000-07:00

This just in ... Marie's going to be on TV tomorrow!

Tuesday at noon Marie is going to be appear live on Global TV News as Global continues with their telethon at BC Children's Hospital. She doesn't know exactly when she'll be on or for how long, but if you can I'm sure it'll be fun to watch!

We're hoping that Josiah will be given the go ahead to leave the TCU to get on TV, but we'll see what the RT says in the morning. Today he had a great day! His ventilator pressures went down (he's still on the 'big blue' ventilator, but doing well) and he's definitely more comfortable. Yet it's obvious that his throat is still sore, and he has now developed an ear infection (a combination of ear tubes being replaced and the cold).

Today Josiah had some amazing playtime on his back! This is the first time that we've ever seen Josiah interested and able to lay flat on his back, hold his head mid-line, and grab toys dangling directly above him! We're so stoked - he did this for three hours! This just come after yesterday where Josiah played with a toy with both hands for the very first time!

Thanks for the prayers and the celebrating with us!
-Andrew, Marie & Josiah

Saturday Afternoon - A Josiah Update

2008-04-12T12:48:00.000-07:00

Hey All

Just a brief'er: Josiah has been receiving ventalin 4 times a day and it's been absolutely great for him (I believe it's a steroid that opens up his airway, much like an asthma puffer). He most likely has a cold, but it's affecting his trachea (swelling) more than his lungs, which sound great. Marie is 100% better, and Josiah is much more comfortable and is breathing way easier. He'll probably be himself completely by Monday.

Thanks for the prayers!
- Andrew, Marie & Josiah

Thursday Afternoon - A Josiah Update

2008-04-10T17:21:00.000-07:00

Hi Everyone

... a follow up from yesterday's post:

Josiah and Marie are both sick, and the money is on that they have the same thing. Josiah continues to have difficulty breathing and so his pressure support has been raised again and he is now on 40% oxygen. He's had two mini-spells in the last 24 hours, but they have been brief with only a tiny de-sat (so that's good).

He continues to be kept 'comfortable' (which means sedated as necessary) and he's coughing a lot, either due to his virus or because he's trying to clean out the goobers in his lungs. There is a partial collapse of one of his lungs (just really wet down there), and so far the viral results have come back inconclusive so we'll have to wait another day. In the meantime, Josiah started a 'blanket' antibiotic that will work against whatever he has brewing until the doctors can determine a more specific approach.

Because he is so exhausted/sick he's had a few 10+ minute seizures today which of course tire him out even more. My day here has been low-key while he rests, but other than that it's been a lot of suctioning and chest physio.

So continue praying for our little man. He's been taking this like a champ and we anticipate that he'll get better soon. But in the meantime he needs to heal up and be kept safe.

Thanks.
- Andrew, Marie & Josiah

Wednesday Afternoon - A Josiah Update

2008-04-09T18:11:00.000-07:00

Hello Folks

Here are a few things that you'd probably want to be aware of:

First, we have secured a condo to rent in Abbotsford for May 1st. Yahooo! It would have been SO NICE to stay in the Arnold/Sumas Prairie area, but accessibility for Josiah had really nullified any options that may have been out there.

The condo is affordable, clean, new-ish and quite well-lit, about 1000+ square feet. Two bedrooms, two bathrooms, and some of the 'bonuses' that really clicked with us was the fact that the common bathroom had an extra door connecting to Josiah's room (great for the nurses!), we have 2 underground parking stalls (definitely needed!), and there's room for our deep freeze (which is pretty awesome for an apartment). We're working on getting our old Toyota back from Alberta so I can have a second vehicle (a must now that we're going to be living in mid-town Abbotsford). And we officially started packing boxes last night.

Between the packing and the meetings gearing up towards Josiah's discharge, there are so many other things on the go: a lot of shopping (lots of basic kid stuff that we haven't purchased yet), trying to schedule a slot for a 'care by parent weekend' (practice taking care of Josiah by ourselves for 48+ hours), giving Josiah a lot of practice driving, and so on. We were able to find an incredible person at a furniture store in town who has a local contact that makes custom beds, so we're having something made just right for Josiah and we're so ecstatic about that!

Josiah's time in the OR yesterday morning went well. His ear tube was completely blocked, so they cleaned his canal and replaced the tube. But all in all, he took it very very well.

We haven't been able to go on any more 'van rides' other than the trip to the mall last Saturday. Josiah did GREAT and really enjoyed his time, not fussing even once (though we did recognize that after an hour he was getting quite exhausted and presumably overwhelmed). He had another seizure that night, his third in-sleep seizure in less than a week that we are aware of.

These seizures are quite different: his vitals may not be affected (heart rate and sats stay fairly normal) but he's completely unresponsive through the episode (you can pry open his eyes and he does nothing), and if you're at his bedside you can see his body do mini-gyrations, little quivers through his torso and into his jaw. It could be all the 'new-ness' being introduced into his day, but it's also symptomatic of being exhausted and working hard.

Today Josiah has been having an off-day and no one can figure out why. He settled down when Trina came to visit, and was even more noticeably comforted when Marie and I arrived, but prior to that he was irritable and not really himself. It could be the teething and/or the drugs from the OR wearing off, but it seems to be more than that (though those theories are most likely contributing to the whole picture).

Josiah has been quite laboured in breathing and unable to maintain his sats. His ventilator support has been bumped up a little, but he's still not sat-ing great. His body language doesn't indicate that he is in distress, but it's a lot of work for him to breath right now and we can't figure it out. An x-ray of his lungs was taken and they are normal for him by all accounts, and had actually significantly improved through the day. We did a trach change (Marie and I, it was my second time) and the trach was clear and not the culprit. He doesn't have a fever really (just on the high-side of his normal) and he is not 'gooberish' (no snot or anything to indicate a cold or virus).

So yeah, he's still a puzzle. The best theory going is that he has a 'plug' in his airway (a secretion glob that is lower than the trach and isn't coming up) and so the only thing we can do it wait for it come up. But this would be the first time he has ever had a plug. Normally his cough is quite strong and pushes the secretions out, but today his cough is noticeably subdued. It's also possible that he is in the early stages of a virus or cold, but nothing else in his body is saying that.

So go ahead and pray that he'll get better! If he just has a cold or something, that's fine and we'd be OK with that since it's better for him to get a cold while he's still in the hospital than at home. But we just want him to be safe, healthy, and happy.

Again, thanks for staying with us on the roller coaster known as Josiah's Journey. Never predictable, but ultimately rewarding.

With Gratitude
- Andrew, Marie & Josiah

Josiah Update - Pictures

2008-04-04T20:55:00.001-07:00

Josiah on January 28th ... chillaxin'

Josiah on February 8th ... ready to roll

The Family on February 16th ... heading to his b-day party!

Josiah & Mommy on February 16th ... Josiah wasn't as surprised as mom ;)

Josiah & Daddy on February 16th ... a little tuckered out

The Family on February 23rd ... a typical stop @ S'bucks

We haven't been taking as many pictures (typical right?!) but here are a few from the last couple months. Enjoy!

G&P
- Andrew, Marie & Josiah

Friday Night - A Josiah Update

2008-04-04T20:40:00.000-07:00

Hello All

Things are coming along! Today Josiah had his first 'van ride' - a trip around the hospital parking lot! The car seat has been fitted and been given a 'thumbs up' by the OT department and we've been given approval to take Josiah off hospital property in our own vehicle (only 13+ months in the making, mind you!) It hasn't really sunk in yet ...

Other things: Josiah seems be avoiding his 'apnea moments' for the time being as he's been great for his sleeps and naps, not needing a back-up rate at all to keep him breathing through the night. Josiah is officially just on 'room air' (no extra oxygen), even when he's out and about beyond the hospital room - so amazing!!! (we'll continue to take oxygen with us just in case)

Josiah is popping teeth like crazy: he's got 4 top teeth slowly working their way in to join the three bottom teeth he already has. And he has a molar that is having the hardest time coming in, all blistered for the last 4 weeks. Josiah is also on full oral feeds right now! During the day he takes all his food by bottle, and remains g-tube fed at night but that will probably change as we increase his daytime food and decrease his food while he sleeps.

More good news: Josiah's head circumference seems to be on a downward trend - Wahoo! That noggin doesn't need to get any bigger ... This Tuesday Josiah will go in to the OR to get his one ear tube checked: it may possibly be replaced so pray that the doctors know what is best. Oh, and Josiah hears fine in both ears (finally had his other ear tested). Both ears have difficulty hearing sounds on the low spectrum, implying that he probably has some fluid built up in his ears - no biggie, we'll take it!

Marie and I are house-hunting since Josiah will most likely be coming home at the end of the month (wow). Not the easiest thing to do with Josiah's needs and all, but we may have found something in town which we have to decide on tonight. We continue to have lots of meetings and appointments, and this month seems like it's going to be absolutely chaotic!

Thanks for all your continued prayers. We ask that you continue to pray for Josiah's safety and health, and that we'll have a smooth transition from hospital to home!

Joyfully & Expectantly
- Andrew, Marie & Josiah

Tuesday Afternoon - A Josiah Update

2008-03-25T15:55:00.000-07:00

Hello Hello

We haven't yet had an official follow-up with neurology in regards to Josiah's MRI, but Marie was able to look over the images with our doctor to get a basic understanding of what's going on. The scan of Josiah's brain was to ensure that his head was expanding for bad reasons (for example, fluid build up) and thankfully there are no concerns that would prompt the doctors to give Josiah a brain shunt. In this case, no change is great news.

The MRI of Josiah's spine was most enlightening and disconcerting all at once. Even in a relaxed position (lying on his side) Josiah's spine is severely curved in his lower back, creating a significant issue when it comes to posture support and healthy development. As far we know, Josiah is still not a candidate for a brace because his too young, but we can anticipate years of follow up, physiotherapy and potentially surgery.

Thankfully, Josiah continues to demonstrate an interest and ability in motor skill development. His head control is getting stronger, his back and neck muscles continue to increase, and he is keen on trying to crawl and loves kicking his legs. It's too early to say if Josiah will every be able to walk or not, but our instinct is that he will - it will just take time. So we pray and wait to see what will happen in this area of his life!

Other than that, we're are waiting for equipment to come in so that Josiah can go for rides in our van. We are now able to travel off property with him, and he's been enjoying his trips to the park and Safeway! Josiah is also teething (at least three teeth are coming in up top) and has started taking small amounts of formula through a bottle again!

The only downer news of the past week is that Josiah has had two seizures in the last 24 hours, unusual and concerning since he hasn't had a seizure in months. His med levels are being checked to make sure everything is correct for his size, and thankfully so far there are no signs that he might be getting sick (seizures can often be a precursor to illness). The reality is that this could just be a part of Josiah's life as his brain is stretched and stimulated. So prayer in this regards would be fantastic.

In God's Grace & Peace.
- Andrew, Marie & Josiah

Friday Evening - A Josiah Update

2008-03-14T19:37:00.000-07:00

Hi All

Josiah did just great for the MRI yesterday, and we'll be waiting into next week for the results. We got a new vent battery today so we were able to go for another stroll! And one of Josiah's middle upper teeth popped through yesterday, but he's taking it like a man. And wow, he was just handing out the smiles and smirks today - he was feeling great!

Grace & Peace.
- Andrew, Marie & Josiah

Thursday Morning - A Josiah Update

2008-03-13T09:45:00.000-07:00

Just a reminder, Josiah is going in for his MRI this afternoon. Prayers for the doctors, technicians, and Josiah - that he would be cooperative and safe - would be greatly appreciated. He will have to go without food for a few hours prior to the exam, so he's not going to be too happy (but they will have him sedated because that's just who he is!).

Thanks.
- Andrew, Marie & Josiah

Wednesday Morning - A Josiah Update

2008-03-12T12:12:00.000-07:00

Hi Everyone - this is LONG overdue!!!

... No news is good news, right? I know many people have been coming here over the last couple of weeks, waiting for some fresh news about Josiah - so sorry! Personally, I've been quite busy taking a group of youth to RUSH in Kelowna two weekends ago and then last weekend attending a local youth workers conference. And the upside really is that there hasn't been any pressing need to give an update on our little guy - he's just been doing well!

So to cover the territory of the last couple of weeks: Josiah has been great. There was a period of time there when the doctors felt he must of been sick with something because his white blood cell count was high, but none of the tests showed any bugs brewing. During that time Josiah also demonstrated that he has an allergy to the antiobiotic he was given (messy poops and full-body rash ... awful!) so we're pretty confident we won't give him that medicine again for a long long time.

Because Josiah was sick and such, he hasn't had a trip around the hospital property for a while, and we would have gone today except his battery died (and that's kind of key, you know?!) BUT Josiah was able to have one of his ears testing for hearing yesterday (the ear the staff are most concerned about because it is so narrrow) and it looks really good! It's most likely that Josiah doesn't demonstrate that he IS hearing because developmentally his is still young and learning how to respond to sounds. But because his battery died during the exam, Josiah will have his other ear tested later this month. But this is great news because it means he probably won't need hearing aids!

Speaking of tests, Josiah is scheduled for an MRI tomorrow to do a scan of his brain and spine. At this point a brain shunt (a 'brain drain' to rid the extra fluids that build up there) doesn't appear to be neccesary, but the doctors want to take a look at his brain and evaluate the state of his spine (if/how it's malformed, any potential need for a corrective procedure, etc).

Developmentally Josiah is really growing. He's learning to play with toys (definitely a right-handed man) and is playing with his legs a lot more. He still is unable to sit up on his own, but his posture has improved so much since he's been getting into the stroller, and each day he improves in his ability to sit his chair. Today for the first time he picked his head off mommy's shoulders and brought his head across to the other side - then he repeated this action a couple of times! It's so amazing to see how his strength/muscles are developing! Oh, and he's smiling/smirking a whole lot more too, and next week we have been given permission to start giving him a bottle again!

... And finally, the big news: today we were told that our target is get Josiah home in 6-8 weeks. Yeah. WOW!!! I don't think it's fully set in yet for us ... There's still a lot of equipment, appointments, staffing, and other things that need to be done, but WOOOOOW. Here we are on the cusp of another chapter, a chapter we were never sure was going to come! The news is still too fresh for me really to have any response other then the obvious and un-profound: WOW!

Up and down, darkness and light, joy and sorrow, hope and despair - God has been faithful.

Thanks for all the on-going cheering, praying, and giving. You guys rock.
- Andrew, Marie & Josiah

Tuesday Night - A Josiah Update

2008-02-26T20:58:00.000-08:00

Hi All

Just a brief one here. Josiah had a spell this morning - first one in a while - and yet it wasn't as bad as it could have been, though there is never really a good dying spell. Nonetheless, he's doing well. An x-ray was taken of his lungs and he had blood and aspirate samples done. Everything points to Josiah having a cold - something that we can handle! So please pray that Josiah will health and bounce back quickly without any more spells, that his secretions will be manageable and that his lungs won't be filled with fluid.

Other than that, things have been well. Josiah goes on walks around the hospital property almost every day and he absolutely relishes it. In fact, he'll get upset if he ends up staying in one spot for too long - this kid wants to move and see the world!

We received Josiah's stroller back from the maintenance department and they did a wonderful job constructing a box along the bottom to hold his ventilator, battery, and other odds 'n ends. Today the OT department took a look at our van to see what kind of car seat will work for Josiah (they would like to make a custom-molded insert for Josiah's car seat so that his spine will be better supported).

Lots of things to do before Josiah comes home, and these things will take time: ramps for our van, determine where we should live (since Josiah's home will essentially have to be wheelchair accessible for at least as long as he is bound to the stroller), setting up home nursing, getting the necessary equipment, final training, and so on. Your prayers to this end would be greatly appreciate. We look forward with eager anticipation to see how God will provide.

Grace & Peace in God's Love.
- Andrew, Marie & Josiah

Monday Morning - A Josiah Update

2008-02-18T11:20:00.001-08:00

Greetings Everyone

Josiah's first birthday has come and gone - thanks for all the birthday wishes, cards, and gifts! Your love continues to leave us speechless ...

Too many thoughts, old memories and emotions come to us around this time. Life flies at a tizzy pace and sometimes it's hard to process and reflect on the highs and lows of our journey to this point. 2007 changed us - as it did a lot of people - and 2008 will do the same. We are broken, yet full, fragile and strong. We live zestfully in the now bearing daily the emotion and experience of the past while wistfully and expectantly looking into an unknown future.

We're grateful that Josiah has made it to his first birthday, and made it flair and a bang. He has NEVER been this stable for this long - God is good. Of course, when he is doing well we inevitably wait for something wrong to happen since it seems to be the cycle of his life ... But we wait for home, with hope, patience, and trust.

We were able to surprise Marie with an extended birthday party: 25 people from our church meet on hospital property to wish Josiah a happy birthday, and best of all Josiah was able to join us outside for TWO WHOLE HOURS. Wow.

Love. Always trusts ... always hopes ... always perseveres ...

Many blessings.
-Andrew, Marie & Josiah

Thursday Morning - A Josiah Update

2008-02-14T11:37:00.000-08:00

Hi Everyone

Here's a few things that are going on in Josiah's life ...

First, Josiah was able to take a trip on Monday! Yup, for the first time since August Josiah was able to scoot out of the room for about 20 minutes and he loved every minute of it! Marie said Josiah was absolutely taken in by it all, loving the 'new views' and not being bothered by the sun at all. Woohoo! We're looking forward to this being a part of his normal routine now ...

Second, we're gearing up for Josiah becoming more mobile ... and ultimately getting ready for him to come home. Next week our stroller will be custom fit to carry all his ventilator supplies and soon we're working on getting a car seat custom-fit for him as well.

Josiah is getting a lot closer to sitting up on his own! Of course, he's got a lot of 'muscle-building' to catch up on, and he really has to compensate for his spine, but he's getting better! Now if he would only stop trying to suck on his thumb at the same time, sitting up would be a whole lot easier ...

Amazingly Josiah's seizures and fevers have been essentially non-existent for the last few weeks - woohoo, what an answer to prayer! The seizure drug is working, and it's so nice not having Josiah's room as warm as it was.

And finally, a prayer request: Josiah's head is starting to grow (which is normal I guess) but because it's large to begin with, the neurologists are concerned that there is fluids building up and putting pressure on his brain. Over the last little while Josiah's sleep apneas have been getting longer (growing from 10 seconds of holding his breath in his sleep to waiting for the machine to take a breath for him - not good!). So the neurologists are going to examine Josiah soon to see what's going on up there, and it may mean that Josiah will have a shunt placed in his head to rid his brain-area of the fluids that are up there.

Thanks All
- Andrew, Marie and Josiah

Josiah Update - Pictures

2008-02-07T08:30:00.000-08:00

Josiah on January 30th ... lookin' HUGE in his high chair!

Josiah on January 24th ... big boy all conked out

Josiah on January 19th ... catchin' a game with Daddy

Josiah on December 16th ... Mommy & Baby goin' a little nuts with the EEG! :D

Josiah on January 12th ... Lookin' sharp

Josiah on Christmas Day ... enjoying his treat sneak!

Josiah on Dec 23rd ... practicing sitting up with Mommy

Grace & Peace.
- Andrew, Marie & Josiah

Monday Afternoon - A Josiah Update

2008-02-04T13:12:00.000-08:00

Hello All

Marie and I took the weekend to be in Calgary for her brother's wedding. It was a brief, busy, and excited time to be with family.

Josiah has done very well of late. His temperature seems to have stabilized after the staff were able to lower the temperature of the TCU (it's always been a few degrees higher than normal room temperature, and no one has been able to fix it until now). Josiah continues to do very well with his LTV ventilator, and we look forward to when he'll be on it all-day long. After that we might be able to take him on short trips!

Josiah has had the odd dying spell: usually brief, but one he needed to be chloralled for one last week. It's strange hearing that he's had dying spells again after going for so long without one, but it seems that his lungs are filled with more secretions these days. Please pray that Josiah will be able to manage/clear his secretions better and that his lungs will be 'dry'.

And how our boy is growing! I keep forgetting to give you the latest numbers: Josiah was weighed at 10.8 kg last week (that's almost 24 pounds) and is 30 inches long! Yikes!

Josiah is also doing well seizure-wise. It seems for the moment that his latest seizure med is working for he's had one only brief (and possibly false) seizure in the last week. Praise God!

That'll do for now.
-Andrew, Marie & Josiah

PS Check your mailboxes for a picture of Josiah. A BC Children's Hospital Lottery pamphlet that was mailed today/late last week has a picture of our boy! The picture isn't the greatest because his face is kind of 'rashy' in it, but that's because he just finished a bath and his skin reacts to the detergent used to clean the linens.

Wednesday Night - A Josiah Update

2008-01-30T19:24:00.000-08:00

Hello Everyone

Another short entry here: Josiah spent 4 hours on his LTV (home vent) today - and was perfect. This is really encouraging, especially since the staff had tried him twice on a different home vent and he didn't like that one at all. The LTV is noisier and bulkier, but - hey - our kid likes it and that's super. Josiah will continue to try out the LTV during day-time stints until he demonstrates he's completely comfortable with it ... then he'll graduate to that vent full-time.

Also, Josiah was extremely active today during physio, and on many occasions partially lifted his head and made crawling attempts! It was very very encouraging. After really enjoying this rigorous exercise, he promptly fell into a deep sleep (not surprised ...)

The weather is certainly playing havoc with our visiting routine, but you can certainly pray for our safety as commute when we can through this weather.

Grace & Peace.
-Andrew, Marie & Josiah

Thursday Afternoon - A Josiah Update

2008-01-24T15:16:00.000-08:00

Hi All

Just a fun little note of a milestone Josiah reached today: today is the first time he has every purposed reached out to interact with a toy! For about 3 minutes he was fully engaged with this 'twirl' toy, so much so that he gave up sucking on his thumb to feel it and spin it around! Yay!

Also, Josiah's pressure-support has been lowered again this week and he's taking it all in stride just beautifully. If he continues this way, the staff might give him a chance next week on a 'home vent' again.

Peace.
- Andrew, Marie & Josiah

Tuesday Afternoon - A Josiah Update

2008-01-22T13:36:00.000-08:00

Hey Everyone

This is a brief'er: Josiah came out of the OR just fine. The doctor was able to put a tube in one of Josiah's ears, but could only do a cleaning in the other because the canal was too narrow. Josiah will have a follow up next week to see how his ears have responded. That's all I have to say!

Thanks for the prayers and support
- Andrew, Marie & Josiah

Sunday Morning - A Josiah Update

2008-01-20T08:14:00.000-08:00

Hi Everyone

Just two quick points to post. First, Josiah has started a new seizure med this weekend (for you who are keeping score at home, this is the fourth seizure med he's been on). At least the doctors think they can still prevent/manage his seizures - I suppose that's something to be positive about. So you can pray for our little guy over the next couple of weeks as the new med is introduced (other 2 seizures meds he is currently taking will be slowly weaned).

Secondly, Josiah is going into the OR on Tuesday to get his ears checked out. It is first a 'what's going on in there' kind of exam, and then Josiah may be given tubes based on the need and if it's even possible (in the past when the doctors wanted to give Josiah tubes, they couldn't because his ear canals were too narrow to work with). So you can pray for Josiah's safety and comfort through all that. We are really excited for Josiah to get tubes (it should help him hear a little better and will alleviate pain from fluid that can build up in there) but at the same time it means he won't be able to have tub baths until he learns to sit up on his own.

Grace & Peace.
-Andrew, Marie & Josiah

Friday Afternoon - A Josiah Update

2008-01-18T17:13:00.001-08:00

Hi All

Just a quick blurb to let you know that Josiah is done with his EEG exam. The neurologists recorded what they were looking for (caught a seizure) so Josiah is now wireless ... well, not completely but at least his head is free! Unfortunately, Josiah's head is very very sore from all the adhesive, and so we're praying that it will heal up soon. Early next week we expect the neurologists to go over Josiah's test results with us.

And just to note, Josiah has been handling his lower pressure-support very very well.

Have a great weekend everyone.

Grace & Peace.
- Andrew, Marie & Josiah

Thursday Afternoon - A Josiah Update

2008-01-17T16:45:00.000-08:00

Hi Everyone!

Not much in the way of the latest, but here goes ...

Josiah has been hooked up to an EEG for 24 hours to see if the neurologists can 'catch' a seizure. Unfortunately, Josiah didn't have a seizure and so must endure another 24 hours (as I type) to see if they are more successful through the night. So we find ourselves the first time ever praying for a seizure: how weird is that? Basically, the neurologists have never observed or recorded one of Josiah's seizures; it's just that the nurses' description of the event confirms that Josiah does have seizures and so he's on medication that is suppose to prevent/manage them. So we'll pray and see what the night brings us. Oh, and the EEG is pretty invasive: Josiah has wires all over his head leading to a computer/monitor/video camera. He's got a 'fishnet doo-rag' on his head holding everything in place, so it isn't comfortable or convenient. But he's been a real trooper about it all.

In other news, Josiah's pressure-support is being lowered this week with the hope that he can be solely on CPAP by the end of next week. To review, pressure-support and CPAP are two ventilator systems that work hand in hand: CPAP blows air into Josiah's lungs (much like blowing air into a paper bag) but doesn't regulate the breathing for him; pressure-support gives an extra 'push' of air every time Josiah inhales to help keep his airway wide. So far Josiah has handled this weaning process very very well. Josiah hasn't had another attempt yet at the LTV (the portable home ventilator) since his 12-hour stint last week. I think the goal is to get him to down to CPAP and then re-evaluate.

That's really it. Thanks for the on-going prayers and thoughts.
- Andrew, Marie & Josiah

Thursday Night - A Josiah Update

2008-01-10T23:55:00.000-08:00

A little note here before I crawl into bed ...

Josiah was given a try on the new ventilator today, the LTV. We were pretty excited about it because it is portable and the vent he'll have when he goes home. Josiah did fairly well on it today, but he did have a few 'moments', including his first dying spell in months. After the dying spell Josiah was sedated so that he wouldn't run into any more trouble, and was put back onto his other vent.

While we are so excited to see Josiah potentially have the freedom to move around with a portable vent, we also see the 'cons' with this particular machine. It's 'turbine-based' (unlike Josiah's previous units which was plugged into the oxygen line in the wall) and is quite a loud unit. It's loud and a hassle to take on and off, and has a bad habit of spraying water on Josiah's face and into his trach when it is disconnected (which off course only makes him upset!). It wasn't a great first attempt at the new piece of equipment, so we'll see what the rest of the week goes. Josiah needed a little more oxygen with this unit than with the previous (bumped up to 23-25% oxygen), and Josiah also had his RSV shot today too which would have definitely made him irritable on top of things.

Thanks for the love.
- Andrew, Marie & Josiah

Wednesday Evening - A Josiah Update

2008-01-09T17:44:00.001-08:00

After a long silence, finally a post in 2008!

It didn't feel as though there was any 'blog-worthy' events going on Josiah's life, a good thing since it's another demonstration of how stable he has become. 'Stable' is a funny word/concept when it's used in conjunction with Josiah: for all his complexities and mysteries, he will never ever be 'stable' (outside of a miracle); nonetheless, Josiah has proven how even keel his life can be over the past two months.

Yesterday Josiah received his new trach! Now, trach changes are the norm for any patient with a tracheotomy, but Josiah was graduating into a larger trach so it's cause for celebration! His new trach is 4.0 mm wide (his previous one was 3.5 mm), and is slightly longer, meaning it goes a little further into his trachea, a good thing since the smaller one was really easy to pop out! A slightly wider airway means Josiah will be able to cope with secretions better, and hopefully has an easier rate of breathing.

For a few hours now Josiah has been breathing on 'room air'. For the past few months Josiah has been no lower than 25-30% oxygen, but here he is just cruising as regular ol' 21% oxygen - very encouraging! Time will tell if he can remain comfortable and adapt to the lowering of oxygen (ie when he's tired, not feeling well, cranky, etc). Tomorrow we also how to get him on an LTV (portable/home ventilator) to see how he responds. It also means taking Josiah off 'pressure-support' and leaving him solely on 'CPAP'. We're hoping that his lungs and airway will be able to cooperate with this change because it would signal a large step towards going home. Depending on how well Josiah adapts to the new vent (and how long it takes), we might be able to take him on outings in the near future.

Josiah continues to be 'puffy' as nothing seems to solve his edema (water retention) issues. There are no more tests to run, and his diuretics are slowly being weaned to see how his body responds (patients often develop a dependency on diuretics, so by slowly weaning the drugs it's possible that Josiah's body might cope in a positive manner). It may very well be that Josiah will need diuretics for the rest of his life, or at least until a cause shows up in his body.

That covers the basics. Thanks for your on-going consideration and prayer.

Grace & Peace
- Andrew, Marie & Josiah

Friday Morning - A Josiah Update

2007-12-28T10:52:00.000-08:00

Hi Everyone

Josiah continues to have a pretty good week. He's been teething a bit we think so he hasn't been too happy about that, and he's still adjusting to his seizure meds so he sometimes sleeping a lot. Josiah still has the odd seizure and his temperature fluctuates a lot which makes him quite lethargic if it goes high. All in all, it's been a "same old, same old" kind of week, though he did spend some time on his stomach with the PT and tried some crawling (Josiah pushed himself forward a few inches!)

Twice in the last week and a bit Josiah's trach has 'popped out' during trach ties. It's no one's fault - we're waiting for a longer trach for a reason! This last one (this morning) was scarier because it took a few attempts to get it back in (Josiah's trachea was clenched too tightly for the trach to be placed back in). But he's sedated and safe now. Of course it's really hard to hear/see because it is a potential life/death moment and even though Josiah's comfortable and safe after the fact, you always have that gnawing wonder if he sustained any brain damage after these moments (Josiah's sats obviously drop low when he doesn't have his trach in!)

So, keep on praying for the daily stuff (safety, seizures, fevers, and spells). We pray that Josiah's tracheal malaysia (floppy narrow airway) and epiglottis will be healed, that he won't have seizures and fevers any more (or that they will be managed), and that Josiah will be safe and won't sustain permanent damage from all his crazy activity. Thanks :)

Grace & Peace.
- Andrew, Marie & Josiah

Josiah Christmas Pictures

2007-12-23T21:37:00.000-08:00

Merry Christmas everyone!
- Andrew, Marie & Josiah

Sunday Night - A Josiah Update

2007-12-23T21:24:00.000-08:00

Merry Festive Greetings to All!

Josiah has had a fairly good week. The only downer we've experienced is that Josiah had 4 seizures yesterday and 1 today. The new seizure med hasn't come up to it's final level yet, so we're waiting to see what will happen. We're really praying that some way some how Josiah's seizures will be managed and eliminated.

Josiah has been managing his airway VERY well, crying hard and at the most needing a short burst of oxygen. In the coming weeks Josiah will be getting a larger trach (4.0 mm wide as opposed to his 3.5 mm currently) which is great news and will bring a whole slew of hopeful possibilities, but Josiah will lose his 'voice' which is one of the few ways we have to interact with him (the wider trach means less or no air will escape up past his vocal chords).

Christmas this year comes with many mixed emotions. Trying to find balance and maintain perspective are difficult daily goals. There are many things things to be grateful for (especially as we reflect on the ways the Christmas season can be difficult for those in other situations) but it doesn't remedy the hole in our hearts. Josiah is missing from our home, that's the bottom line.

Continue to pray that Josiah will be happy and healthy. While he is managing his airway fine for the moment, he continues to have his ups and downs with seizures and fevers.

Comfort and Joy.
- Andrew, Marie & Josiah

Monday Afternoon - Josiah Pictures

2007-12-17T16:08:00.000-08:00

Josiah on November 23rd
... styling & chillaxing

Josiah on December 1st
... this little monster is a super-blower!
PS: his unique natural hairstyle is now dubbed the 'Jo-Hawk'!

Josiah on November 22nd
... hot tubbing & getting a head massage - there is no better life

Josiah on Dec 6th
... working on that head control & doing great!

Josiah on November 30th
... getting skating tips from Trevor Linden

Comfort & Joy
- Andrew, Marie & Josiah

Friday Morning - A Josiah Update

2007-12-14T09:06:00.001-08:00

Festive Greetings

Josiah has had all in all a fairly stable week. He had another flu shot yesterday so he slept a lot of the day away. Josiah is getting close to sitting up on his own and his smiles are coming a little more frequently now! So beautiful! His head control is so exciting and he absolutely enjoys it (and gets a pretty intense focussed look on his face while doing it).

Josiah is still having the odd seizure, and his current seizure med was bumped up a bit because the levels in his body were low (the current med will continue to be given as the new one is slowly introduced).

Really it's a 'same old, same old' kind of week. Thanks for the prayers.
- Andrew, Marie & Josiah

Monday Afternoon - A Josiah Update

2007-12-10T16:55:00.000-08:00

Christmas Greetings

Josiah started the day with a bad spell (but not an extremely bad spell) so he was chloral-ed to help him chill out and recover. The rest of the day he's been happy, good, and sleeping a lot; I think he's trying to catch up on the sleep he missed those few days when he had seizures and a fever. The doctor ran tests last night on Josiah to see if something was the matter (because his fever was lasting longer than normal), but I believe - as per usual - everything came back negative or normal. Sheesh. We just want to find cause for the problems!

Continue to pray that the doctors will be able to uncover why Josiah retains fluids and gets subsequent fevers. Pray also that this new seizure medicine will work and enable Josiah to live a less-interrupted/more comfortable life.

Blessings & Thanks.
- Andrew, Marie & Josiah

Saturday Afternoon - A Josiah Update

2007-12-08T16:45:00.001-08:00

Hello All

Josiah had a good/bad yesterday. When he was awake he was happy and well-tempered, but when he slept he had seizures - about 10 in total we think. So that wasn't very nice, and they were all different kind of seizures: some he would d-sat and not wake up but self-recover; others he would tense up and cry after a brief 'blank' period; he had at least one 'frozen chest' moment when it was difficult to bag oxygen into his lungs. Thankfully he had no seizures over night and is so far having a seizure-free day - thanks for the prayers :)

Oh, and on the topic of siezures, Josiah started a new seizure medicine yesterday. His dose will increase in small increments each day and we'll know in a couple of weeks how it is working for him. The neurologists want to see if they can eliminate more of seizures, and maybe even determine if there has been more sub-clinical seizures going on that are not noticeable. When never expected that Josiah would have a seizure-free life and were able to live with the fact that Josiah would continue to have the odd seizure, but we're grateful that the doctors still believe they can do more and are trying this new approach with Josiah.

Today Josiah started off his day quite feverish but well-tempered (high temp needed tylenon and ibprofen), and has come down a bit in temp and heart rate. Josiah has an absolute fascination with his helium balloon and really likes the fibre optic 'UFO' light we got him this week! Also, a few days ago Marie held Josiah's shoulders and he controlled his own head very well for over 8 minutes - so cool!

Lots of Love.
- Andrew, Marie & Josiah

Tuesday Afternoon - A Josiah Update

2007-12-04T14:07:00.000-08:00

Hi Folks

Nothing really new to report. Josiah has good and bad swings it seems and he's yet to fully recover and be back to where he was 2 weeks ago. Yesterday was the most engaged he has been in a week, but then he has a bad spell and it's a couple steps back again. He started this morning with another bad spell and so he's stil getting chloral on 'n off as the nurses see fit. I'm only guessing, but I think his airway is very sore because his spells tend to bring up a lot of pinky secretions for the rest of the day. So your prayers would be dandy: that the doctors can figure out what's going on (feverish again today and just plain irritable at times) and that Josiah will be able to recover and have his airway healed.

Oh, the PICC line was removed yesterday. Josiah has a really terrible rash from the adhesive (he reacts to all kinds of tape) but I think it'll get better soon. He is still being g-tube fed and hasn't been allowed to take a bottle for over a week, which may get him a little upset but so far he's been OK with it.

Josiah's latest thing (made possible by his new/temporary ventilator): to blow air/spit of his mouth! It's his form of singing (he'll really get going if you sing to him!) and I think he just likes the newness of it and the vibrating it gives to the lips. Mommy calls it 'kisses' and Daddy calls it 'race car sounds'. :D

Christmas is sneaking up on us. This is my first round of Christmas non-anticipation. Usually I'm all wound up with Christmas decorations and jingles, but I believe all the sizzle and zing of Christmas is going to be shortened and muted this year. The hospital environment (though they try hard) hides/hinders the rythm of seasons. It's been weird because I don't feel Christmasy at all.

Grace & Peace.
- Andrew, Marie & Josiah