Sunday, January 22, 2012

Three Month Update

I am a little late posting about Noah's three month birthday but things have just been busy around here.

Noah seems to be doing pretty well these days. From my unskilled eye he actually seems to be getting better. I know that isn't how Cerebral Palsy works, but from what i can tell his arms and legs seem to be loosening up a bit and he is using both sides much more equally than before.

Noah's physical rehabilitation doctor said we should watch his left side. Probably basing this off the fact that his seizures mostly originated on the right side of his brain. However, what Katie and I have noticed is that his right side seems to be the weaker side. His regular physical therapist also agrees with this notion and has us focusing on getting him to use his right arm more. As well as getting him to look and turn to the right more. He has been making progress with this and I would say that he is closer to being centered now, but still favors his left side more.

We have been focusing on getting him to sit better. Also to use his right side more while he is sitting, which is more difficult for him than when he is on his back or being held. So far he is doing well with this, but there is still a noticeable difference in the strength and coordination of his two sides. This is the way Cerebral Palsy can work in some cases. It really seems that is Noah's issue...

Over all though, we are very happy with Noah's progress. He is talking more, as well as playing with toys and turning towards voices and sounds. Putting to rest a lot of our concerns about his vision.

It is still only the beginning, but i am feeling good about his progress thus far and can't wait to see where he goes from here!

Saturday, January 7, 2012

Lessening The Burden

The past couple weeks have been a long needed respite from all of the pressure associated with Noah's condition. 
For one thing, Noah seems to be doing well and is moving along in his development at a rate that i wont argue with. He may not be burning up the developmental trail, but he is getting to be "average" or at least close. and that is good enough for me! Now i understand that just because he can do what an average 3 month old can do doesnt mean when he is 12 months he will be able to proclaim the same...but I am taking it one day at a time...and we have had a few good ones lately. 
But that isn't really the focus of this post. After Noah's diagnosis we were referred to some programs that help children with disabilities and their families cope with the added stresses. We applied for SSI (social security insurance) Medicaid, CSHCS (child special health care services) and Early On. Some of these applications were tedious and very stressful in their own, but i am glad we were given these tips because in the coming months and years the help we will get from them will be invaluable. 
Early On is an in home physical therapy program funded through the schools here in Michigan. We were directed to them before Noah was even out of the hospital and got started as soon as possible. This program has proven so valuable to me that i cant even explain it. A physical therapist comes once ever week, every other week, month, whatever you choose and evaluates your child's development and shows the parents exercises and other methods to help the child develop properly. Or at least to help them remain comfortable. 
We have been seeing our physical therapist every other week so far and it is unbelievable how much help it has been. She gives us areas to work on and ways to do so and we spend the next two weeks working on those areas. So far Noah has been responding well to these methods and putting a lot of our developmental concerns to rest. Things that i would have otherwise overlooked as "nothing" are given the attention they need to be sorted out before they become a real problem. If you are the parent of a child with special needs and if you have a program like this in your area, i would HIGHLY recommend getting your child involved. best of all, it is FREE!
SSI / Medicaid- SSI is a cash payment to those born with disabilities or somehow disabled otherwise. We applied for this mostly because it would instantly qualify Noah for SSI recipients medicaid. Which we did not qualify for otherwise. He receives a monthly benefit in the form of a check ($14) which isnt much of anything, but as i said, i didn't apply to get money but to get Noah insurance. Having this insurance means that Noah's inevitable medical expenses will be covered and now his Mom can stay home with him more days because she doesn't need to work full time to maintain his medical coverage. Meaning someone will be home with him to give him the attention he needs to have the best chance at a normal life.  I will admit that before I had Noah i was apprehensive about these sorts of programs. Not that i was against them, but always thinking i would never need them and i could make it without them even if i qualified...but you know what? the second Noah was born and i knew things just weren't right...all of that misguided "pride" or whatever you want to call it disappeared. It was replaced with an urge to make sure that Noah got every chance he could get at a normal life. And if programs like these give him that shot, then that is what i will do. 
CSHCS (child special health care services) is a supplemental insurance provided to children born with disabilities. The family pays a yearly fee based on their income and family size and are covered for an entire year. This fee can be waived if the child also qualifies for Medicaid. What CSHCS does is cover medical costs incurred due to that child's specific condition. In Noah's case this would be therapy sessions, braces (if needed) and so on. Obviously this would vary by condition. Noah qualified for this program and due to his SSI qualification (and by extension Medicaid) we didn't have to pay the yearly fee which is a huge load off our minds and bank accounts. 

I never thought i would be wishing that my son qualifies for Medical assistance...I would much rather he had been born with no problems and i never needed to even know about all of these programs. But i sure am glad they exist for those who need them...I don't know what we would be doing if they didn't right now. Now my attention can be focused where it truly belongs, on Noah. Not on how we are going to pay his next medical bill. 

If you are the parent of a child with special needs and need information on these or any other programs for families in need. Contact your local DHS (department of Human Services) for more information. They will be helpful in guiding you to the programs and people you need to contact. 

Friday, January 6, 2012

Noah's Eyes Checked Out

Today Noah had an appointment with the optometrist. A few of his doctors, as well as his loving parents, were concerned about how he may be seeing. While testing an infants vision cannot be as effective as testing an adults, there is still a lot that the doctor can tell us.

What the doctor did tell us is that Noah appears to be seeing things, but how well is still up in the air. His eyes appear to be formed fine, and the optic nerve is normal. However....this was never really my concern. I have always been able to tell that he sees. I am just unsure about how he uses that information once it makes its way into his brain.

One of the several spots found on his MRI was in the optical processing center of the brain. One of the larger spots to my understanding. This has raised concerns about his vision processing and if he is able to realize that his sight is actually a way to take in his environment. However, it is really hard to get a 10 week old baby to tell you how well he sees. I will say this though, Noah seems to see follow things visually far better in the past week than he ever has. And I also discovered that if we are in a dark room and use something that lights up he follows it perfectly. So it could be nothing but over precaution but in Noah's case i would rather err on the side of caution. This sort of goes along with one of the suggestions that the doctor made as well. He suggested that we find something with a red light and encourage Noah to follow it with his eyes and head. Apparently boy's vision develops slower and he is right on par for the course as of now. And red being the lowest on the visual spectrum is a good color for him to focus on.

He is scheduled for a 9 month appointment later in the year where they will try some "tricks" to get a better idea of how well he is actually seeing. For now though, we will just have to believe that no news is good news.

Wednesday, January 4, 2012

A New Year For Noah

Noah had his first Early On appointment of the year yesterday. His mother and I were growing concerned about a few things we had noticed over the last two weeks and were getting a little anxious about this visit.

I was worried that she wouldnt get a good idea of his current state because he had been up for a while and I was expecting him to be pretty tired but he summoned up all the energy he needed...and then some! Noah was wonderful for her this time. He was wide awake and doing better at all the things we were worried about than he ever has. He was looking to the right quite a bit and using his right arm more than usual. These are two things we have grown very concerned about. Even though his physical rehab doctor said it was his left side we should worry about, his right has been the one that seems a bit off. We are starting to wonder if his condition is more widespread than the "hemipeligic" answer we were given before. His muscles seem tight on both sides of his body and he is actually using his left arm FAR more than his right. Which is supposed to be the opposite. When it comes to his legs he is flipped around. His right leg is kicking far more and used in general a lot more than his left. So we are a little confused about what all of this means.

But back to the appointment...

His therapist was amazed with his progress over the last two weeks. He did amazingly and was "talking" to her the entire time. He did great with his head turning as well as his tracking. Which we did explain comes and goes in spurts, but is over all getting better over time. We were told to work with his hands more. He still holds his thumbs inside his fists and doesn't tend to use them like he should. But after a good massage he does use them for a bit but slowly brings them back in.

All in all this appointment went very well. It doesn't mean that all of his issues are cleared up by any means. But it does give us hope that no matter what issues arise, he is strong enough to over come them given the right care and help along the way.

Noah has his optometrist appointment tomorrow. This is the big one in our minds due to a lot of the signs we are seeing. We are very concerned about how well he sees the world. We are hoping that this appointment will give us some answers as well as a way to try and move forward at a better rate than we currently are. Babies only develop things that they need or use, and without seeing well, it is hard to motivate a baby to do the things they need to do to develop properly. So if there is something wrong with his vision the sooner we find out the better.

One day at a time... 
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