Follow-up with the Neurosurgeon

Kenny saw the Neurosurgeon yesterday. He said that in reality there is actually more fluid on his brain than before, but it's obviously moving with the ETV proceedure that they did. But there may be more fluid too, because with such significant injury to the brain, it doesn't grow as a typical brain would. So his head growth has slowed...thank goodness. It's like a puppy growing into it's paws...Kenny is growing into his head! LOL! He had his RSV shot today. You know it's bad, when you go to Surrey Memorial, and the nurses remember you from when you brought a kid in 3 years ago for RSV shots!!! So we go back in 3 weeks, and then every 4 until the end of flu season! We are slowly getting ready for Christmas! I'm so ready for the break from appointments! If I were to write down an average week out for people, I think it'd make their head spin! LOL. Maybe I will in the new year!

Interesting informations!

I got a call from Bio-Chemical disease control for Kenny on Tuesday. They are now asking for blood work from Gary and I. If you look at the requistion, it shows that they are looking at 1p31.1, I assume a specific gene. What this means, I don't know. This waiting game sure makes me sit on egg shells. I didn't really care what or if they found anything when we began this with them. But now that there may be some sort of answer the curiosity is just killing me!!!

Kristen has been registered for Kindergarden!! WOW! My little CHERUB sure has come a long way! We also had mapping for her CI on Wednesday, so I was able to ask about how to go about and when to use the FM system with her. I do want it for her hearing aid side, but I'm not wanting to use it with her CI side. I was always under the impression that because it is a different was of listening, (different than hearing aid) that we need to allow her to hear as natural as possible. I did try the FM system and had found that it just confused her. Really, when she wears her CI, it's like she's hearing like you and I. Her brain has worked out the important information and knows what to listen for, well with voices anyways. I can be in a gym, and she can hear me call for her from half way across! So I wanted to see if she would be fine without the FM in school first, before we try it out. Well her audiologist stated that they have done more research on CI's with FM systems. Unless Kristen can tell me if there is interference then no. It also takes away alot of the background noise when it's on as well. They can't say how many decibles, but in a Kindergarden setting, she may miss out on peers conversations. They are also finding that the FM with the CI would be more useful in lecture type settings. Where it's all about information and direct note taking learning. I am pleased with these answers as this is how we use the implant anyways, like an aid, but like she's hearing when it is on. Don't get me wrong, I do know she's deaf, and with out it she can't hear a thing. So it is an aid, just not like a hearing aid. the hearing aid will have an FM coupled with it. And if we need the equipment the school is responsible for getting it for us. But until it's needed, it's best to allow them to hear like any other hearing child, just with an implant. And her brain has worked out what's important and what's not, so we're home free! Now to work on getting that darn bi-lateral!!!

It's strange

It's weird. I used to follow all of the CDH blogs and cry when babies earned their wings. I would click and find new families to follow and pray for. But since Kenny's been born, it seems like I feel like my time is just spent elsewhere. I don't like that though. I don't even find myself having time to check the blogs that I follow. I also am a part of so many different 'cliques' of families now. My world wide web of friends on FB seems to be from so many different walks of life now. We are a home with so many different acronyms that sometimes I don't even know what i mean anymore. I have nurses asking me what my education is!! Well it's grade 12. And the rest is self taught because of my kids.

I find it interesting. There is a family that I met at Mingle and Play at the hearing center this summer. Their daughter has hearing loss as well. So we are 'friends' on FB. I had met another family just before Christmas last year on FB. Their son has PVL. That is how I found out that Kenny was probably having infantile spasams...thanks to their video that they posted of their son. Then there is another family that I met on FB and their child has CDH and hearing loss. And because of all of these issues I have them as friends on FB. WELL they all live in Prince George and know eachother as well. I just feel like small world! And really, I am a part of too many communities!

Poor ol' St. Nick

So I took the kids to get their annual Santa pic done...oh poor Santa. Oh well this is what it is...and we love it!!




The kids an update...since I'm so awful at updating lately. Busy busy busy!

Joe: He is finally recogizing his sight words. It's been a long time coming. Because of his ASD it's been hard for him to get the 'academics' side of things. But socially he does great. So we work at it a day at a time. And he is soooo proud of himself for knowing how to read now!

Kristen: Kristen was seen by the visual impairment clinic a week ago. Her vision is at 20/50. Not quite high enough for a visual impairment clasification. She has also been eating. And not just eating!! But eating everything. When you have fought with a kid with feeding issues to see them eat salad, peanut M&M's, cashew's, subway, pizza....well everything. It is so amazing. The kid can pack back a whole can of ravioli to herself. She's still quite little though, but catching up. She is also telling us when she has to poo! And that's amazing. We've gone 8 mths with the kid letting it go in her panties! Geeze! But we're there. I watch her now, and I don't even recognize my own child. I sometimes wonder when I'll forget who she was, and who she has become now. Is it normal for CDH to scar us like this? I hope that I can move forward and forget the what's and really enjoy the now's!

Courtney: She is loving pre-school! She tells me everytime when she goes what she had for snack. I ask everytime, "what did you do today?" And everytime I get the snack run down!!

Kenny: He saw visual impairment as well. His vision has gone from 20/2000 all the way to 20/360!! He said it's because partially the infanitile spasams are under control. We are still on the four month ween down process. The reason that we do not want to stay on the med's too long is that they can cause retinal damage. I was told that most seizure med's have a side effect that can cause vision problems. So as long as he does well we're clear for now. And hopefully they don't change to another type of seizure. We are also still seeing Bio-chemical Disease control. They are still investigating whether or not there is something metabolic/genitic going on with Kenny.

I'm hopeing to have the pediatrition send us all for genetic counselling. I think that there has got to be some reason that we have been so lucky to become a part of so many cliques in the world of 'special'. It doesn't change anything, but it may be nice for the kids to know for when they are older. What they do with the information can be up to them.

Updates

So we have a couple of updates...
we are officially on a weaning process with the Vigabatrin. I must say I'm a little bit nervous about it, but we have to do it at some point right??!! So it will take a total of 4 months to take him down off of it.

We also saw the visual impairment doc today...and Kenny's vision went came from 20/2000 all the way to 20/360! Such an improvement. Well it's because the infantile spasams are undercontrol. He did let me know a few other things though. That if Kenny does have a metabolic disorder that later in life that could effect his vision again...oh well, and predict or control the future at this point. Just something for me to keep in mind. My kids are all doing so well right now! So well that they are ganging up on me and driving me crazy some days...lol! I think it's cause winter is coming and they really can't do too much outside play and that suck's. Oh well, we will survive...and they will find new and interesting ways to drive me nuts...but that's normal right...lol!

Not sure how to keep up!

It's been so crazy busy nuts around here. So hopefully i can do a quick catch up. I got some new AFO's being made for Kenny. his last one's his feet just pushed out of them. I chose a nice green camo for him! Must be stylish. He's turned into such a happy kid. So weird because he was a screamer for so long. His hearing test has come back completely normal. So no hearing loss. We have met with Bio-Chemical disease control. The tests that they have done thus far haven't told us much, just what it isn't. So now more blood work. They are convinced that it's something metabolic. It's just ruling it down to what it is. So the PVL may not have been caused by the tramatic birthing process. Oh well, doesn't change the damage done, but if we find out what it is it will prevent more from happening.

Kristen is talking! and talking and talking! Wow the kid is actually communicating, and signing. if i am busy and she's talking to me, she will actually sign it! so cute! I just can't believe that in a matter of 4 months she will be FIVE!!! Are you kidding me! FIVE! oh dear. how quickly they grow!

Courtney is LOVING pre-school! she is so cute, she says "we go to Perrin's??!! yeah!!??" the teacher's name is Mrs. Perrin...lol

Joe is doing his Joe thing at school. We are still working on basic's with him. he's having trouble recognizing his letter's...still! It's frustrating for me to watch and sad at the same time. but he tries so hard!

Me, well i am going to need a break soon. I don't know how i'll be able to keep up this hectic schedule that i'm doing right now. but winter break will be here soon!

We did go home after two nights

I am so bad once I get home to remember to update my blog. We got discharged on Tues. So only two nights in the hospital. Kenny is doing well now. We had a follow-up appointment with Neurosurgery on Thurs. Everything looks good so far. they said that they'll do a repeat MRI in three months time. But for now, he's looking good. we have a follow-up with the pediatrition tomorrow. I'm going to ask for asthma testing. I don't believe that it was just broncitis with a cold. The way that he was breathing and wheezing took me back to the day's that my dad had some bad attacks. Even if they can give me some puffer's so that I can 'rescue' him before it gets bad...that would be very helpful.