Friday, April 15, 2011

New Neurologist, EEG, and Sensory testing!!

Wow!! How much could possible be going on all at once?? I don't really think I could handle another thing on my plate right now, it is overflowing!!!
Let me start with our new Neurologist. I called Dr. Wisoff, for a referral. He recommended Dr. Sandra Forem at NYU. It didn't take too long to get a appointment with her. Wouldn't it figure she doesn't take our insurance and it is $550 for the initial visit, OYE. Interesting how you will pay anything to see a good Dr. for your child, huh.
She proved to be amazing. She spend close to 2 hours with us. Asked us all sorts of questions. She was really thorough. We left having to schedule a ambulatory EEG to rule out seizures. She said we would hate her for having us do it, but it had to be done. Then, the most interesting stuff happened!!! We got to talking about Jack's flat feet, and we mentioned that ALL 3 of our kids have flat feet (neither Terry or I do). Now we learn that Jack has low muscle tone, and some sensory issues. He could use a OT eval and a PT eval. Dr. Forem thinks that all 3 of our kids probably had low tone and therefore all have flat feet. Interesting. They will probably not be the most athletic kids, like in basketball, or soccer, maybe they'll be good at swimming ;o)
We had Jack's EEG done, which, as Dr. Forem said, was a nightmare!!! Oh, NOT FUN!!!
First we had to be in Lake Success at 9:00am on Saturday. It took about 20 minutes to put on all the electrodes, all of which Jack screamed like you have never heard a child scream. Thank goodness he slept on the way home. He was pretty lethargic all day. He really didn't want to do any kind of playing, and he actually wore the backpack with the machine in it!!!
By 4:30 he had ripped the gauze covering off. Terry luckily was close by and pushed it back on as best he could. Then Jack and I went to bed together in my bed so he didn't strangle himself in the wires. At 11:30 he took a big 2 1/2 year old roll across my bed and off came the whole thing. So not fun. We had to remove it. Only took another 30 minutes, and a shower. Poor Jack all he wanted to do was sleep!
But then we got the good news. NO Seizures!! YAY!!!
So on to the OT, PT evaluations!
Since Jack is nearing his 3rd birthday, he will have to transition over from EI to CPSE (the school district) for services. We have to have all new Evaluations done. Our door has been revolving lately, not only with his regular therapists but with Speech evaluations, PT, OT, Educational and Psychological evaluations. We always learn so much from these therapists. We new that Jack had some sensory issues. But never really new what that meant. Now we have been reading up on it, and see some similarity's with Caitlin. Could she have a Sensory Processing Disorder? hmmmmmm. It would be so nice to know what makes her tick, what makes that brain of her's work. She has started taking Yoga classes and loves them. I think it is her now favorite thing. We have several video's Caitlin likes to do at home, but now she is attending an actual class. There really is such a big difference!! I think it will be really good for her.
Now we have ordered a trampoline, oh not 1 but 2!!!! One for outside and one for inside because apparently they are the best for a Sensory Diet!!
I have always be very anti trampoline and now I will have two of them. The kids are already being warned of the rules that they have. The more we read about Sensory integration, and Sensory processing, the more we see it in Jack and Caitlin. Knowledge is power, right?
To top it all off I am closing up the Salon from Main St. and moving it home. I will be taking clients at my home and visiting peoples homes from now on. I am very excited to have more freedom and time to spend with my family. I have really needed this. However closing up a whole business is NOT easy, but I am certain it will be much better!!
For now, lets hope this weather keeps getting better, and summer WILL come. I need Gin beach more then ever before!

- The first step towards getting somewhere is to decide that you are not going to stay where you are.

Tuesday, March 1, 2011

March 1, 2011

I can't believe how long it has been since I have posted on here! Too long, that's for sure. Most important we had Jack's 6 month post op check in December and it looks great. Less fluid at the main cyst, a little pooling around other parts of his head, however Dr. Wisoff says that this is normal. Jack may always have some extra fluid in his head. For the MRI Jack had to be put under and he did fantastic!! The best yet. He woke up like nothing happened, sat up and wanted pretzels (his favorite food).
To the left is a picture of two scans. The one on the left is from June and the one on the right is from December. Quite a difference I think. Everything had a lot more room in there now too!

Another thing I'd like to mention is that Jack is on a gluten free diet. He has been for several months now for his attention. We actually think it has helped him a great deal! It also seems to have helped his reflux. He doesn't seem to cough at all anymore since he hasn't had any gluten. It has been a definite learning curve for all of us and quite expensive but worth it completely.

About a year ago I came across the North Star Foundation online. This foundation breeds and places companion or therapy dogs for children on the spectrum or some going through a critical disease or suffering a extreme loss. The dogs are typically Golden Retrievers but can also be Lab's or in the case of allergy sufferers they can be poodles or Golden/Labradoodles. We agreed that this would be a great addition to our family especially for Jack. Our golden retriever puppy was born on October 20th 2010!!!! We just had the opportunity to meet with him over the weekend. His name is Buddy. He is being raised in New Jersey by a wonderful couple. We can't wait until he comes to live with us, but first he needs to learn his manners. Here is a picture of Buddy!

Isn't he cute!!! We just love him!
I will try and update more. But we all know that probably won't happen. We are going to see a neurologist in NYU on 3/11. We are hoping to find a Dr. who can give us a little more insight into Jack and what we might expect in the years to come.
Here is a picture of Jack in Hilton Head Island, SC on our recent family vaction.

We are very proud of Jack and all of his accomplishments. It has been one very long and busy year.