Wednesday, 30 May 2012

Another Milestone

Today marks another milestone in the life of Jacob.  He is 14 months old (young) today  To many people, another month is just another month (yes, we've been there.)  With us now, another month is another miracle.  At times I stand in amazement that we still have our little guy, who wasn't suppose to make one week.  And now to see some progress, we are reminded daily that God does hear and answers prayers!   We know that many people were praying for Jacob and us as a family during Jacob's first few weeks.  We felt that sweetly at times too.   And now 14 months later, it is clear that God has answered those prayers. 

Taking Jacob out in the van for a drive is sometimes a scary experience!!  Thankfully I have a very competent (and energetic) respite worker who helps me out once a week and if I need someone to travel with Jacob and me.  She so willingly went with me to Sears to get Jacob's one year pictures taken (yes, I was little late.)  In the long run, it was worth all the effort!  Here are some of the priceless photos.

Friday, 25 May 2012

Good News!

Wednesday Jacob had an appointment with the dietitian and the nurse practitioner for tube fed children at the hospital.  We've been in limbo for about 6 months regarding his feeding tube.  Do we keep going with his current g-tube or do we change to a different type of tube?  I wish this could be an easy decision, but every tube has its pros and cons.  So, a lot was depending on his weight gain/loss.   With much thankfulness I can say that Jacob has finally gained weight.  It was a small gain, but it was a gain:)  That is the first gain since the beginning of March (he's lost 2 pounds since then.) 

Also, very positive news came when they found out his head grew.  To be honest, with our other kids, I thought the whole head circumference thing was a big waste of time!  Well, head circumference is one of the key's in following Jacob's health.  He is still under the growth chart for his head size, but he is following the growth curve at a steady -10 percentile.  This means that his brain is growing!!!!!  That probably explains why we are getting a few responses now and then from our little man.

Jacob is involved with a play group at the CNIB (blind institute.)  This is proving to be very interesting.  They have set up about 12 different stations which the kids can explore, all relating to their sensory system.   He loves the 'little room' the best!   We're unsure why he likes it so much, but he responds very well with it.  The more he moves, the better it is for him, as his muscles and joints are very tight.  We are trying to encourage him to move, and this little room is perfect for that.

He also loved the big green chair (until he almost kicked himself out of it.)

We experimented with a light table, but were unable to figure out if he actually noticed it or not.  We know that his vision is impaired, so it's a matter of time to see what he sees if anything.  Everything physically is perfect with his eyes, it's just a matter of what his brain processes.

With Jacob, answers aren't easy or quick to find.  It all takes time and repetition.  Our vision specialist gave us a great example this week.  She said that as we develop, everything we learn all goes in 'books,' nicely categorised on a shelf., and before long, we have a bookshelves full.  With Jacob all those books are in a pile on the floor.  Every time he sees/hears/smells/feels something, his brain has to sort through the books until it finds where he has experienced that before.  Many times his brain turns the experience off before it actually finds it.  That's why repetition is key!!

Often I think of all the issues that Jacob deals with and it is overwhelming!  Even though he'll never reach the milestones of most children, I'm reminded continually that Jacob is 'fearfully and wonderfully made!' 

Tuesday, 22 May 2012

Some History

As Paul and I were heading to the St. Thomas Elgin General Hospital on March 30, 2011 (to have our fourth child), I was already picturing what life would look like with four children.  Our girls would be thrilled to have another sister, but for our little two year old boy, I thought a boy would be great.  Either way Paul and I would be happy.  I just kept thinking, as long as the baby is healthy, that's the main thing.  To this point nothing alarming had arisen with the pregnancy. 

At 7:50AM, Jacob was born.  When he was only a few minutes old, he was brought away to the nursery.  At that point, all I wanted was to see what our boy looked like (I didn't think anything was serious with our boy.)  The only thing I knew, was he was pretty much bald, which was totally different from our other three.  We were told after half an hour that Jacob 'wasn't behaving,' so they were sending him to London Children's Hospital.  The nurse stated that he was having seizures, his heart rate was irregular and he was unable to breathe on his own.  Not a pretty picture!!  After another hour, I was able to see Jacob when I was wheeled into the nursery  I almost passed out at the sight of our boy!! 
Jacob was transferred to London when he was 4 hours old.  Being separated was a trial all in itself.   I knew that God wouldn't give more than we could bear.  I was transferred several hours later.  Once we were settled in London, we were given the green light to see Jacob in the PCCU (Paediatric Critical Care Unit.)   The nurse we had was wonderful (especially to a mother, considering all she did was cry!)  All she told us was that it didn't look good.  Jacob was sent for many tests.  We were told that night, that we would have a meeting with the doctors to go over the results the following morning.  In my mind Jacob had a seizure disorder, and would be on medication for the rest of his life...we could handle that. 

Well, at 11:00AM we had the meeting that would forever change our lives.  Jacob had a very rare brain disorder called Pontocerebellar Hypoplasia type 2.  His cerebellum and brain stem were underdeveloped.  The disorder is regressive, which meant that his brain cells would continually die off.  He would never walk, sit, crawl, talk, or communicate.  Much else that was said I didn't hear.   All I knew, we were in for a rough road.  We wouldn't have Jacob for long, and probably would never see him out of the PCCU. 

Jacob battled on for 9 days, when he graduated to the paediatric floor.  He was there for 4 more weeks.  The main concern was his feeding.  In the PCCU he was fed through a nose tube. 
The feeding team worked with Jacob, but we all soon realized bottle feeding was not an option - Jacob would need a feeding tube.  With much thankfulness, surgery went well and he recovered quite quickly.    I had a lot to learn about tube feeding - which even the thought of it made me dizzy.
God strengthened me above what I could have imagined possible. 

Jacob settled into the home life fairly well.  For the time being there were no real pressing concerns.

We've had our ups and downs in his first year.  Many, many doctor visits, specialist appointments, and tests were part of the first year.  It seemed like every day, we were learning something new about the disorder.  The neurologist said at one of our first appointments, 'Jacob will tell his own story.'  They didn't know what to expect, considering it is such a rare disorder. 

A few times we thought we were going to lose him.  The Lord in His mercy, provided strength and health to get him over his bouts of pneumonia.  Thankfully he has only had pneumonia twice, which is great considering every time he spits up (which is many times a day,) there is  a risk of his feed/phlegm going into his lungs.  God has been gracious.

At a year, we started getting smiles:)   I never expected to see a smile.  This picture was the first time he was in a child's size lazy boy.  He loved it!  He can't sit on his own, so for him to be sitting like this, is a miracle in itself!  
Currently our biggest concern is: Jacob keeps losing weight.  Things like this always come with many questions, but the first one his brain not signalling his body to grow anymore?  Children with similar neurological disorders have had the situation where their brain stops signalling things properly, and they continually lose weight:(  I hope it is just a feeding issue that can be adjusted with his feeding schedule.   We'll see tomorrow as I have a meeting with the feeding team in London. 

Last weekend I was privileged to attend a scrapbook/card making convention in Buffalo with some family and friends.  Scrapbooking is a way I can leave the stress of the day behind and focus on something other than the many concerns we have we Jacob (even though I'm scrapbooking Jacob's life.)  One of the papers I stumbled across had written on the top 'Time Will Only Tell.'  I've struggled for a title for this blog for some time, but when I saw those words, I thought it applicable for the blog as...time will only tell.