Bittersweet Update

by debi9kids on April 25, 2008

This is an update that I have been putting off for a while, simply because my fear is if I put it down in writing, that it makes it true.
For those that aren’t aware, when I was pregnant with Emma & Will, somewhere around 29 weeks, my placenta that had been fused tore in half. It was noticed on ultrasounds that I suddenly had two separate placentas and although I questioned about it, I was just simply told that everyone must’ve been mistaken and there must have been two separate placentas all along.
How wrong they were!

When the babies were delivered at 35 weeks, my ob was shocked to find their placentas had actually torn apart, and not equally. Emma’s placenta was the size of a medium pizza and Will’s placenta was only the size of the palm of my hand. Their placentas were sent to pathology and it was determined that they were deteriorating and both babies would’ve died within 24 hours. It was a miracle that I had been delivered and an even bigger miracle that both babies were breathing room air and seemingly healthy.

Of course, it only took us minimal time to realize that they had been affected by the damage to the placenta. It was very clear that Emma had had a stroke while in utero. Her right side was completely affected. Her mouth & eye was droopy, causing her face to look aysmmetrical and making it very difficult and sloppy for feeding. Her shoulder, arm, hand, hip, and leg were also much weaker on the right side and make all the normal baby milestones occur much later than “normal”. Physical therapy was started right away for her, by 3 months old, and she did really well and honestly, was very receptive to her therapist. She never cried and was just such a great patient that she made HUGE strides quickly and surprised us all. She completely AMAZED all of us by learning to walk by 15 months old and at this point, I don’t think we could stop her if we tried. 🙂

Will was a different story. While Emma was getting way too much blood & oxygen in utero, Will was being deprived. The lack of those nutrients caused brain damage, which led to cerebral palsy. When Will was very tiny, it seemed as if his diagnosis was on paper alone as he made all of his early milestones quickly and was a “rock star”. Then, suddenly it was as if he could do no more. Once we hit the “learn to sit” stage, he could go no further. His back & stomach muscles were/are too weak to support himself and he not only struggled, but eventually became content with just laying on his tummy to play.
Physiacl therapy & developmental therapy were started for Will at 5 months old and he has been working really hard to get himself stronger. It is very hard to watch sometimes, because it is difficult for him and he cries, but he is making progress slowly.
Will has two different types of ceberyl palsy- spastic & hypotonic. The spastic CP is in his feet, ankles, knees, and hands. This means that the tone in his muscles is really tense & tight. The hypotonic CP is in his trunk & stomach muscles. This means that he has very low tone, or loose muscles. This combination makes it very difficult for Will to learn to do a lot of things because the two types of CP play against each other.
An example: We get Will into a standing position and he locks his knees into place to support himself, but his body can’t stay upright because he can’t support his own weight.

It is sad & depressing and it is hard to watch and it is completely & utterly frustrating for Will.
I really try not to let it get me down, but some days are just worse than others. 🙁

Now, I did promise an update, so here it is…

Emma is all but being discharged from physical therapy! She will only be getting it once a month now! This is HUGE! She is just going to be getting it to work on her using her right foot & hand more, as she completely favors her left side. But, what a little miracle she is!

For Will, he is going to be increasing therapy. He gets developmental therapy 2x a week and physical therapy 1x a week right now. He will be getting speech 1x a week and PT 5 days a week once the summer begins. It will be incredibly intense, but hopefully it will really help him.

We have been given RXs for the following items for Will and just as soon as our insurance kicks in, we should have them for Will and they should make a HUGE difference in his life as well.

1. A Gait Trainer
This will help Will to be more mobile. It will support his trunk and give him the ability to be able to move about EVERYWHERE! YEAH!

2. Dynamic Trunk Splint
This will help to lend extra support and help Will to keep more upright. (it will also help with some of his sensory issues)

3. Sure Step ankle braces
These will help to posture Will’s feet in the right position for standing and this new design is no where near as bulky as the types that Henry wore when he was little. (thank God! because those were awful to fit inside shoes)

So, there you have it…
I do want to just say one thing, to clarify things…
No matter how frustrated I may get, or how depressing it sometimes is, my babies are PERFECT in every way and I am always thankful that God blessed us with them in our lives.

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