Wednesday, November 30, 2011

Physical Evaluation: A Place To Start

Today a physical therapist and an occupational therapist came to our home to evaluate Noah for participation in the "Early On" program. They did a test that measures Noah's development against the average child. They also asked, and answered many questions. The results of his test weren't exactly ideal, but far better than we thought they may have been a month ago.

The pair asked us all sorts of questions. About his feeding, his activity, movement, vocalizations, you name it. And then they gave him a little test. But like they said, there is little they can truly know about his condition this early in life, but any score will give us a baseline to work from. They were also impressed with how much we seemed to know already and what we had been paying attention too. Which i credit to U of M hospital's amazing support staff as well as good old internet research.

As far as results, They don't really say all that much, and a lot of it is kind of confusing...

The results are tallied up and given a number score with 8-12 being the "typical rage." This number is then translated into an age that marks about where the child is compared to their actual age. This is where things got confusing to us. Noah was considered 6 weeks for the testing purposes even though he will be 7 weeks tomorrow. (they wont count a week until the actual day) Quite a few of his areas came back as "0 months" but he got a score in the "typical" range...basically saying that he is still very young for this sort of testing and the ranges are so large that at such a young age it can seem like a lot.

Here are Noah's development scores:

  • Adaptive
    • Self care - 8 points - age equivalent 0 months 
  • Personal - Social
    • Adult Interaction - 8 pointsage equivalent 0 months
    • Self Concept  - 4 Pointsage equivalent 0 months (mostly based on vision which is one of our areas of concern ) 
  • Communication 
    • Receptive Language - 9 pointsage equivalent 0 months
    • Expressive Language - 10 points - age equivalent 0 months
  • Motor
    • Gross Motor - 12 points - age equivalent 2 months
    • Fine Motor - 10 points - age equivalent 0 months
  • Cognitive
    • Attention / Memory - 7 Points - age equivalent 0 months (again this test is mostly based on vision)
    • Perception / Concepts - 8 points - age equivalent 0 months (vision again...)

So all in all these weren't the greatest results we could have hoped for. But the therapist said that some of them were probably artificially low. but some may also be artificially high due to not really being able to test properly due to Noah's age. 

They pointed out a few areas of concern: Vision, Hand clenching, Not turning to his right, and excessive tone in his left side. All things I was aware of myself, but had no confirmation of. They gave us some tips on how to get his head moving better, and how to get him following with his eyes more. So we will be adding that to his daily exercises. 

Noah was accepted to the program not as much for his scores, but because of his history of brain damage and seizures. They seemed optimistic about his outlook, which is always good! But as with everything with a child with a developmental disability, it will be a long road. We meet again on Monday to get the paperwork out of the way and set up our first appointment. They will give us the option of weekly or monthly visits. We are hoping for more of a bi-weekly arrangement which will fit our schedules as well as get Noah extra care. 

So begins a new chapter in Noah's Ordeal....

Tuesday, November 29, 2011

Noah’s Therapy Evaluation Is Tomorrow

Noah will have a visitor tomorrow. A representative from the “Early On” program will be stopping by tomorrow to evaluate Noah’s development. As well as note any concerns and suggest possible courses of action, such as therapy and so on.

Early On is a program that is run through the schools here in Michigan and is free for children born with conditions like Noah was. They will (pending the diagnosis) probably be stopping out every week or every other week and doing physical therapy with Noah. as well as educating Katie and I on exercises to do with Noah to try and curtail any negative effects of his injury. I am extremely grateful that programs like this are available to families in our predicament. But I can’t even begin to describe the fear and anxiety I am feeling about what they may find...

As you know from this blog, there are many things i have noticed about Noah that just don’t seem right, and I am afraid that they will confirm those fears. Not that this fear would stop me from having him looked at or anything like that. It’s just that right now they are just fears from an untrained eye. When a professional points them out it means that there may be something seriously wrong and then there is that to deal with on top of everything else.

Children diagnosed with HIE, especially stage II & III have a chance of cerebral palsy. Most people who don’t know think of Cerebral Palsy as an actual disease or injury, but it is usually more or less a symptom of another problem such as brain damage in a developing brain. And if this is the case, the sooner it is caught, the more we can do to limit the effects it may have on Noah’s life. Along with our other concerns about Noah, this is making for a nerve wrecking experience. But still, I would rather know and deal with the problem than ignore it and hope for the best.

I will be sure to update everyone after his appointment. And maybe even make some videos of the exercises they show us to help others out who arent fortunate enough to have a program like Early On in their area.

Wish us luck!

Sunday, November 27, 2011

Noah at 7 Weeks

Whether i can fathom it or not, our little Noah is now 7 weeks old. It is getting harder and harder to believe that he is the same baby that spent the first week of his life almost entirely unconscious. He has come so far in such a short time and things are a lot different than they were when i last wrote. In the last three and a half weeks some concerns have disappeared and others have materialized in their place.

When he was getting pretty skinny
But first, the good news: As i mentioned last time, Noah wasn't gaining weight to his doctors liking. This trend continued at least a few more days. Getting to a point where i was actually concerned when looking at him. he was still acting healthy but he didn't have much fat left on him. He was getting pretty skinny and i was probably a day from taking him in to ask what to do, and then he started eating. and eating...and eating some more. All of the sudden the formula was agreeing with him and he went to town! We went from hoping he would keep 2 ounces down to giving him 4-6 every 2 hours, if not more. His weight quickly rebounded and we have a happy, plump little guy today.

Another concern i mentioned a while back was his thumb grasping. This is 100% gone from my mind now. Noah is now using his thumbs and other digits just fine now. He grabs on to your finger, your shirt, moms  name it! I was glad to clear that one from my mind. Not being able to use your hands properly would have been a big hurdle in a child's life.

Noah has been on two medications since he was sent home, Phenobarbital and Keppra (levetiracetam). I am glad to announce that he has been weened off and no longer needs the Phenobarbital! Which with no signs of new seizures is great news! Phenobarbital, while effective, comes with some hefty side effects. Mostly it acts as a sedative. And let me tell you, now that he is off it completely we can really tell the difference. He is still taking the Keppra two times a day, and will be until further neurological work is done. 

And one more tid bit of good news. Katie and I have been adamant in making sure Noah gets his exercises. Which has lead to a strong baby! Boy can this guy kick! We can hold him up and he will kick out his legs against whatever he is against and stand up. (obviously supported by us)   But its not just a quick little kick, he will hold himself there for a while, sometimes minutes. He almost looks proud of himself when he does it too. This however has become an issue when trying to burp him. We prefer to hold him in a sitting position and support his head and burp that way. Well he gets upset when you take that bottle away and kicks away, nearly escaping our grasp. DO NOT mess with this baby when hes hungry! lol i know is the case, not all of the news will be of the happy sort. 

Katie and I, as well as Noah's doctor are concerned about his vision. I know I said i was less concerned about this, but things change. Noah seems to have trouble following things with his eyes. He is far more interested in lights or just whatever is to his side. He is commonly just staring off somewhere. This isn't to say he doesn't look around, he does, but my main concern isn't his vision. But his understanding that his vision is a way to interact with the world around him. His doctors have also shown concern for this as well, and made an opthamologist appointment to see what they think. I have come to understand that this isn't extremely uncommon in children his age, but considering his condition they just want to be sure. 

Another point of concern is he still seems a little hyper-tonic on his left side. The doctors and neurologists mentioned that this may be an issue. However early intervention is the best medicine in something like this. We have an appointment with "Early on" this week where they will evaluate his condition and needs. Deciding what treatments will best benefit him in the future. 

We just have to keep rolling with the punches when it comes to Noah's development. Things may be good for him now, but his development at 7 weeks hardly means he wont have some sort of problem later in life. However,  there is always a solution to every problem. And for what its worth...hope. And while i know hope doesn't fix anything, it does help you get through the things you just cant fix yourself.

Sunday, November 6, 2011

Noah's Three 1/2 Week Progress

Well i was going to wait for a week before writing another update on Noah's progress, but a lot has changed in the past few days and i think it warrants documentation.
Last time I mentioned a few things that had me worried. Firstly the constant grasping of his thumbs. But not just grasping, keeping his thumbs tucked in tightly even when his other digits opened up. Well I am glad to say that while he still does this frequently, he has started moving his thumbs on his own.
Another thing I have noticed that i consider a good sign is that he is holding his head up when supported almost all the time. When i have him against my chest I hardly support his head. Really I just have my hand there to catch him if he were to let go, but he holds his head high almost all the time now. Also he is lifting his chest and head even better when laying on his stomach now. Which from everything I have read and been told is actually fairly early for an average child. 
And yet more good news in the past few days, I am doubting his vision less and less. One of the things we should be watching for is impaired vision due to a spot on the part of the brain that controls vision. But he has been observed on more than one occasion doing something that tells me he can see. When he is crying for his bottle he will calm the moment i hold a bottle in front of him. As well as appear to look right at said bottle. So either he can REALLY smell his food, or he can see it. as well as associate the sight a bottle with comfort and feeding. which is also a positive indication of his development!
However, just as i notice things that put my mind at ease as the days go by, i notice things that make me worry...There are a couple new concerns in my mind as far as possible problems.
The biggest problem is not an observation of my own, but of his doctor. They told us that Noah isnt gaining wait as steadily as he should be by now. They want him to gain 24-25 grams per day ( i think that was it) but hes only gaining 7... So we began giving him formula in addition to his mothers milk. We are alternating between the two and this has given rise to new problems. 

Noah doesn't seem to tolerate formula well. We had plenty of samples we got over the time Katie was pregnant, none of which seemed to work. He would vomit his feedings right back up. So we have now switched him to a Soy based formula and as of yet he is ok...but he gets into these fits where he eats FAR too fast and then spits it right back up...we have tried slower nipples but he still finds a way. Its not every time...but its no good when he does. 

Another possible problem i have noticed is the shaking of his arms when extended. When Noah is fully awake he will kick and extend his arms, like most babies do, but when his arms reach the point where they are fully extended they begin to shake or quiver. I don't know if this is normal, but it was obvious enough and frequent enough for me to take i will continue to watch this behavior to see if it worsens or goes away. Consulting his doctor if need be.

All in all our little boy seems to be doing well. But these first days are hardly telling of what may come our way in the future, but also very telling of simple things that he may be day at a time...

Thursday, November 3, 2011

Noah At 3 Weeks

Little Noah has been home for just over a week now. He seems to be developing at a good rate so far. However at only 3 weeks old it is hard to say we are in the clear from here on out.

Noah has done great with his feeding so far, and seems to be digesting things properly. Also he is now holding is head up more and more, almost all the time when supported. He is also making "throat noises" a lot. His ability to "find" people and follow them seems to be getting better. Also, he lifted his head and chest up very well when on his stomach from time to time. Which to my understanding is actually ahead of schedule. As well is his ability to roll from side to side. But that may just be a side effect of him kicking so much. 

My wife and I are doing our best to keep him stimulated. By doing the exercises the physical therapist showed us as well as talking to him. We also sing to him and read to him a lot. He seems to enjoy the attention and every day seems more and more active and aware of the world around him. 

One thing that still concerns me is the seeming lack in thumb control. Noah keeps his thumbs bent inside his hand nearly all the time. They will move with some coaxing but for the most part they stay there. I have read it is normal for infants to ball their fists for the first 3 months of life. However, given Noah's unique situation, I must be vigilant in my observations and adjust his care accordingly. 

Overall though, at 3 weeks I am feeling very hopeful for a 100% recovery, but fully aware that may not be the case at all. The hardest part is not knowing where my son will be in his development in a couple months, let alone the rest of his childhood. But i will say it again, One day at a time.

Tuesday, November 1, 2011

Final Prognosis: Where We Go From Here

After a week of testing and care at the hospital, we were finally given a cause for Noah's seizures and subsequent hospital stay. However, the final answer is hardly comforting. Nor is it definitive 
Noah's seizures were caused by brain damage he received at some point during pregnancy. The damage was caused by a lack of oxygen (blood) to the brain at some point. The doctors can't pinpoint when this happened, or how it happened for that matter. But the technical name is Hypoxic-ischemic encephalopathy, or HIE for the average person.
He has multiple spots, or dead areas in his brain. Some in the frontal lobe, in the optical lobe, and in the Corpus Collosum, the part that connects the two hemispheres of the brain.
They called the damage "moderate" which basically states that he is stage 2 of HIE. He also showed, or shows, some symptoms of the less severe stage 1. After getting his seizures under control all that you can really do is wait and watch his development.
Only time will tell the extent of the damage to little Noah's brain. Or how well his brain adapts to its injury and "rewires" around the damaged spots. Nobody can tell us just what we will be dealing with in the coming days and months. We need to keep a close eye on Noah's development and when he reaches the milestones all children reach as they age. (holding up his head, crawling, talking, walking, etc.)
So far he seems to be doing great, and I can only hope for his progress to continue at this rate. Regrettably, I know things aren't always so picture perfect. I have looked into the official numbers on infants with his sort of injury and the odds aren't perfect, but at worst he holds a 50/50 chance of having a serious disability in the future. However most of the disabilities have a lower maybe 10-30% chance of showing up in his life.
Only time will tell...but until we know where he stands we will do therapy and anything we can as if he has the worst of all chances. and when he proves all of this wrong, we will go from there....

one day at a time, that is all we can do now.
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