Showing posts from September, 2010

Cub Scouts

Ian started Cub Scouts. He has had 2 activities and has loved it as well as the other boys/families have been wonderful. Tomorrow night he will have his first pack meeting, where his den will be introduced to everyone. He is selling popcorn (Poptober as scouts calls it). 70% of all proceeds from this sale benefit local scouting. Below is the link to check out what they are selling.
Then click on
JPEG's and Descriptions
The following is what is available for Ian:
A = $50
B = $40
P = $30
C = $25
D = $25
Q = $25
E = $20
F = $20
G = $15
J = $15
S = $15
L = $10
Please note you can check out the following information if you would like.
Nutritional Information
Kosher Certification
Let me know if you are interested and I will get you down on his order sheet. If you have any questions let me know as well.

Ian says thank you….

Marci and Brian

September 21, 2010

This weekend was fair, we saw some progress in Ian, and tremors were not as bad. He was able to do a little bit of self feeding himself. Wanted to sit and play ball, one of his current favorite things to do in the house…sit on the floor and roll his little blue ball around. On Friday, I spoke with Dr. Raymond and we kept Ian’s medicine at 1.5 teaspoons for his morning does and 1 teaspoon for his other 3 doses. We did not restart the KUVAN. I spoke with Dr. Raymond yesterday morning, Monday, to let him know we saw a little bit of improvement over the weekend. Ian did some self feeding. He tried to walk holding my hands but was not able too, his feet were all over the place and you could tell how hard he was working to try to get them to move the right way. He was able to play balloon with one of our friends and could get his arms to hit it.

Late yesterday I received an email from his PT at school and she was pleased with his of his spirit and determination. She stated that she knows h…

Going back to the beginning....maybe

Well the last few days, have been a little rough....we have been working with a compounding pharmacy in order to get his dose down in volume but remaining the same. That being said we started with the new compounding medicine on Friday night. For a few days before that Brian and I felt we were seeing a regression in his skills. Having a hard time walking again, holding his balance in the bathroom, fine motor skills to feed himself along with writing. On Monday, he started complaining of his eyes being blurry. Yesterday, Wednesday, I spoke with Dr. Raymond, after going over everything with him, he discontinued his KUVAN (this is the BH4 supplement we started a few weeks ago) and increased his morning dose of sinemet from 1 teaspoon to 1 1/2 teaspoons. We stopped the KUVAN last night (Wednesday) and increased the sinemet this morning (Thursday). We are to touch base with him tomorrow (Friday) morning.

Tonight at dinner, he had to lean on me in order to hold himself up, in addition to h…


The cat sat. The cat sat at the mat. The bat sat. The bat sat at the mat. The cat, the bat, the mat- sat, sat, sat. I was not able to upload the video, here's what he read and a picture of it... What a great way to start off the year...

Getting Caught Up to Today

Ian started a new school the fall of 2009, he was walking fair, not wonderful. I had informed his teacher and therapists of his summer illness. Within the first few weeks, his teacher and physical therapist began counting how many times he was falling in a day…he was averaging 10 times a day. This became a safety issue for him. So they approached Brian and I regarding Ian starting to use a walker. It was not something we were thrilled with but we needed to give it a try. Ian did wonderful with the walker, “Wally”. Yes, Ian named it. He was speed racer with it, got around great. We even purchased one for home. Ian was doing well in school, seemed to be doing well over all. Then comes December 2009, Ian had another episode. We did not end up in the hospital this time, all of his symptoms were the same. We did go to the ER per his pediatrician. There was nothing they were able to do but the pediatrician wanted to make sure there was nothing else going on. Since Ian had a second episode i…

A Long Over Due Update

I wanted to let everyone know I have been thinking of posting and want to be updating it on a regular basis, however, there just does not seem to be enough time in the day for me to get it all done.

The kids have started school and seem to be adjusting well to being back. Ian has moved back to Chatsworth (where Becca is and where he was 2 years ago) do to Franklin not having AC. He is in the same program he would have been in at Franklin (ALS = Adaptive Learning Support). Becca is happy to have Ian back at school with her, when we told her she cried...happy tears.

We have started Ian on another medicine on top of his Sinemet, yet it is still too soon to know if it will do anything. We do know that his Sinemet dose needs to be adjusted but are waiting due to the new medicine. So we wait.

We have been notified that Ian's wish to meet Spiderman has been granted. We know we will be going to Walt Disney World, however dates are still to be determined. Ian has been telling people he is …