Tuesday, January 15, 2013

Noah at 15 Months: Progress But Still A Struggle

It has been far too long since I posted about Noah's progress, so here we go.

Noah has been doing well. His cognitive abilities seem right on track, I even think he may be a bit ahead of average in that area. He is learning new games and figuring things out daily. He is great at figuring out new toys, and imitating us more and more (kisses!). But as with any child with a disability like Cerebral Palsy, there will always be areas of concern. Here's a quick update on where we are today.







Sitting

Noah still cannot sit by himself, well...fully. He can sit but lacks the balance to maintain a sitting position. This accompanied with the fact that he doesn't try to catch himself when he does inevitably fall makes things interesting. I am just dreading that first E.R. visit that i'm sure will happen.

Speech

Noah's speech is still a concern. He babbles, but lacks many of the sounds he should be making by now. Which is not uncommon with Cerebral palsy. Considering that the tongue is a muscle, it's not that hard to understand why. As with most of his issues this appears to be due to a physical problem rather than a cognitive problem. We will be starting speech therapy soon, just not sure when yet. Hopefully that will help.

Standing / Walking

Considering he is not sitting, standing and walking are still a ways down the line. He will try to pull himself to standing, and with a little guidance can get up and stand when supported. But he gets himself so excited that he ends of going into extension and falling over. I have started to notice serious frustrations when he is trying to do something like pull to stand but his arm or leg prevents him. This will probably only get harder to watch and deal with as he gets older and starts to ask why he has these challenges. Noah will be getting his first leg braces early next month. They are to help with his ankles more than anything. These will help him on the path to standing and eventually walking.

Growth and Development

However despite all of these issues our area of most concern is his weight gain. As I have mentioned before, he just isn't gaining enough weight. And this problem has only gotten worse since my last update. He has grown a full 3 inches since then, but gained basically NO weight.

So now we are on a diet of high fat, high calorie foods. Cheeses, ice cream, carnation instant breakfast in his milk, and so on. We need to pump some calories into this kid but he just wont eat. And its not that he doesn't like food, its that he just wont eat much. And when hes done...HE'S DONE. he will smack the spoon away, throw the food on the floor (good thing we have dogs!) whatever it takes to get it away from him. If his weight doesn't increase in the next couple weeks we will have to meet with a nutritionist to discuss other options. I'm hoping it doesn't come to that.

Overall Noah is a happy little guy with a pile of problems that just won't go away. I know he will do great in life, but i just want him to have the best shot possible so we are going to therapy 4 times a week and soon to be 5 once speech is added in. But he trudges forward despite all of his issues. He's a little champ...here's hoping he can catch a break sometime soon.




Thursday, December 6, 2012

Big Day For Noah


Noah was one busy little guy yesterday. And by extension so were mom and dad.
Not long after we got up for the day. Noah and Mom went to therapy at the hospital just down the street, nothing special there. considering he is there 3 times a week. But then after a quick nap and meal it was time to work out again because Early On stopped by to do a little more therapy. Noah did great at both sessions, in fact he did VERY well with early on. He is making progress on standing, though his balance is still an area of great concern.
Not only did Noah have physical therapy twice in under 4 hours, there was more. Right after early on finished up we suited up the little one and drove off to Ann Arbor. Noah had an appointment with his constantly overbooked neurologist. (usually booked a year in advance.) After a long wait in the clinic we pretty much just answered some questions and she did a quick evaluation of Noah and suggested that we continue our current schedule of therapy and treatments. She did mention that his cognitive and social skills are a bit behind, But not drastically. He is around the 9 month milestones rather than the 12, but considering the time it took his brain to "rewire" around the damaged areas it isnt too alarming. And really, most of his areas of concern can be traced back to a physical disability rather than a seeming mental problem. So that is always good news. 
It sounds pretty sure that Noah will be getting leg braces in the near future to help with is foot placement while standing, and probably  not long after that he will get another set that allows his foot to move when he starts learning to walk. 
So there was no real big news on this big day. But another positive marker in his progress. 

Monday, December 3, 2012

13 Months+ : So Proud Of My Little Guy


I havent written exclusively about Noah in quite a while on here so i think now would be a good time. 
Noah has changed so much in the past few months. His physical situation is still...well how should i put this....ideal, but he is showing progress and determination to progress as well so we are just taking that as it happens. The changes i have noticed lately are more in his personality and cognitive abilities. 
He has gone from a baby to a child in my eyes. He now has clear motives, and you can see him working everything out in his head. He is communicating more but still not really "speaking" we are working on a few signs to help him communicate with us better because speech may be a bit more delayed than with some kids, even if the intent is there. 
I guess my big this is he is much more independent lately. We finally got him to feed himself a bottle and now he only likes to do it himself. He doesnt like to be fed but to feed himself, He even seems pretty content just playing by himself for long periods now. We are always right across the room but he stays entertained all by himself. He still loves to play with us as well, but it is nice that he can sort of entertain himself so i can get things done (like this post for example) 
My fears of any serious mental disabilities are mostly gone, i still dont count out minor issues, but for the most part he seems like a very intelligent and capable little guy who just has a few more hurdles than most kids his age. Which this has always been my biggest concern. A Cerebral Palsy diagnosis doesn't mean cognitive problems automatically, but they do have a tendency to go hand in hand. I think that is one of the biggest misconceptions about Cerebral Palsy. 
Anyway, i was just playing with Noah tonight and I really got to see just how far he is coming in recent days. And i cant help but notice that there is just a different look in his eyes, like he understands his world better than he once did. It is amazing to see his progress and so exciting every time he does something for the first time. I mean it is exciting when any child hits milestones and has their "firsts." But when you know your child has a chance of never reaching that "first" it just adds so much to the celebration. 
So, Noah is doing well. I will try to share some photos and videos soon! if he allows me to that is! 

Tuesday, September 18, 2012

Noah At 11 Months

I have been horrible about posting to this blog. Things have been so busy in our lives these past two months it is hard to believe that they actually fit into the last 60 days.

Noah is doing well. Especially well in the last couple weeks. It seems that he hit a point in his cognitive development where a new understanding of the world has opened up to him. He is talking more and more. Still babbles and whatnot, but a few things are starting to seem like real language. He seems to say "hi" in return sometimes. Well its more of "hyahhhhh" but it is placed properly when greeting him. He also is starting to mimic some actions when prompted. Such as patting his hand on a surface, shaking his head, saying "mama" and a few other things. He even tried to clap today when we praised him. Most of these things surfaced in the last week or two alone. So while he is a little behind on some of the cognitive milestones, it doesn't seem to be so far that we should be very worried.

On the physical front: Therapy continues, 4 days a week...he seems to tolerate it well though most days and actually enjoys it as if it were play time. His sitting is still not improving. He just cant seem to balance himself, or see the need to stop himself from falling. His muscles are still very tight. Most notably in his right arm and hand as his left leg and foot (the criss-cross pattern returns!) Oh and did I mention HES CRAWLING!!  (Video)

His doctors said there was a good chance that Noah would never crawl in a conventional way. Well Noah didn't agree with that. and in the past few weeks he has gone from his first shaky movements to motoring across the living room to even trying to pull himself up on things. He lacks the arm strength to really get up there, but the will is there and if I know Noah, the way will follow soon.

Soon we will be evaluating him for Botox injections to help with his tone. If they decide it is a good option we will also have an MRI done while he is sedated to see how his brain is "rewiring." Not that it could really tell us much, but just for a information value it would be interesting to see.

As far as growth, Noah is still not tipping many scales. He is very slowly gaining weight which is an improvement over his loss at a previous weigh in. We are adding butter to his meals and doing all we can but we just cant get him to gain the proper weight. But if we can keep him gaining we are at least making progress.


Overall, Noah is amazing us every day. We still have our challenges but I am more hopeful now than ever that Noah will overcome whatever is thrown in his way. 



Oh, one more thing, Come vote for Noah in the Gerber photo contest! we only have one more week to vote and I think we might have a chance still!

Saturday, July 21, 2012

Noah At 9 Months - Slow and steady

Noah is now a little more than 9 months old. He is turning out to be quite the little character. He loves to play and laughs all the time. Maybe a little too much...We have basically been spoiling the little guy since he came home and it is starting to show. He doesn't like to be left alone and typically only falls asleep if he is with us or at least within sight. The problem with this is I don't even want to break him of these habits. It's not just Noah that wants to cuddle all the time. It is mommy and daddy too! I think having such a scare at the beginning has made us a little more clingy than we might have otherwise been with him. But this wasn't the point in this post.

Noah has been progressing in some ways and stagnant in others. I guess I will start with the bad news:

His weight gain is still very low. Noah still only weighs just under 18 pounds. Meaning he only gained about a  pound in the last two months. After they told us he was underweight back then...He is also still not growing in terms of his head circumference at a rate that we would like to see. Which can be an issue because head circumference is a pretty accurate indicator of brain growth. But as of yet he is showing no real signs (that i can see or that have been pointed out) of a slowed cognitive development. He is very social and very aware of his surroundings. He seems to catch on to new games quickly and is starting to mimic me when i make certain noises at him. So for now my fears are at bay concerning his cognitive abilities.

On a more positive note, Noah is rolling all over the place and pulling his legs underneath himself in a near crawling position. However he still lacks the upper body strength to lift himself on his arms to really crawl. But the motivation is definitely there, and in time the motor skills will catch up. His therapists seem happy with his progress and they also all seem to enjoy working with him. He is such a happy little guy.

Sitting is still a struggle but he is getting better and better at it. he can sometimes sit by himself now but only if we are there to catch him when he extends his back and falls over. His balance issues wont be going away overnight, but he does seem to be learning more and more how to control himself. So any progress is good in my eyes.

Overall, Noah is doing great. And we couldn't be happier with his progress and how well he seems to take all the therapy and exercise. He is convinced that all of this is fun rather than work. And you know what? with him everything is fun!

Wednesday, May 23, 2012

Noah's Progress: Getting Rolling

It finally happened...again...


Noah has had a long struggle with rolling over. And a couple months back we thought he had figured it out. But after a full day of rolling (back to front) he just forgot how. But today after much practice with mom and dad as well as a couple therapists, he got it! 


He is a little behind on this developmental milestone. But not so far behind that it raises too many concerns. At least in my mind. Now our biggest developmental concern is his sitting. He still struggles to balance himself while unsupported. Though i will say he is getting better and better. 


Noah is also having some trouble gaining weight still. We are now supplementing his breast milk with formula in an attempt to help him pack on some pounds. He has essentially plateaued in his growth and we need to make sure that he grows properly so that he can focus all of his energy on his development. A healthy baby learns best! 


But i must say that though there is still a long way to go, i am less worried about a serious cognitive disorder than i was in the past. In the past week alone i have watched Noah learn that he can make several new noises and then use them frequently. He is increasingly aware of his surroundings. Knows his parents apart from strangers VERY well, but shows great interest in every new thing he comes across. And at this stage of the game those are all great signs. We will never know how well his brain was able to "rewire" after the damage of HIE was done. At least not until much later in the game. However, as of today i am (cautiously) optimistic about his outlook. Which puts my heart and mind at a bit of rest.


It is hard to describe how it feels to have all of this uncertainty about your childs future. Granted no parent knows just how their kid will turn out in the end. But having something like "moderate" brain damage looming over your every thought really makes things a bit harder. I can't recall a day that there wasn't at least one moment of sad realization. A moment where i thought "Noah might never be able to do  "_____".  Most of the time it is something simple. Like when i sat there and thought about how fun it would be to take guitar lessons with him when he gets older so we could both learn together...but then realized that there is a very strong possibility that will never happen...Because you need two fully functioning hands for that. This and so many other moments have come that just bring a sinking feeling to my chest and a sting to my eyes. 


However, these moments of sadness don't begin to compare to the joy i feel when he does something for the first time. All the times i see his face light up when i walk in the room. Or when he laughs out loud at one of our pets and reaches for them so he can pet them. Those moments will always outweigh the sad times. But the sadness is still there, no matter how well i dress it up and hide it as optimism. 


HIE and cerebral palsy are not just a struggle for the child, but for the parent as well. Every parent wants what is best for their child. For their child to never know pain or disappointment. This is of course impossible, but just knowing that there is little you can do to protect your child from these feelings hurts...


Again, things are going well for Noah these days. I guess i just needed to vent some of my inner turmoil. Maybe the good times just give us time to reflect on the things we have suppressed in the bad times...who knows.



One day at a time...



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