Thursday, June 28, 2012

The Peanut Challenge and Mary Massery

This week is yet another busy week of appointments.

Peanut Challenge:  Juliet and I went to the doctor's office to try some peanut butter. They began by putting a little bit on her lip and waiting 15 minutes. After 15 minutes there was no reaction, so she was given a 1/4  tsp and waited 15 minutes.  However this time there was a small red splotch by her mouth. We then waited an additional 10 minutes, she had no further reactions so she was given an another 1/4 tsp. After the second 1/4 tsp, there was a small hive by her nose. So the peanut challenge was stopped. She was given some benadryl and we will try again next year.  Overall I thought it went well. She was given two 1/4 tsp and had a small reaction and the doctor thinks it is possible that she may out grow her allergy.

Mary Massery: Yesterday I took William for a consultation with Mary Massery.  She is a physical therapist that specializes in breathing and postural impairments. We attended her clinic at the DuPage Easter Seals. The first hour we spent talking about William's medical history.  The first part of every visit with someone new is always like an interview. I actually carry a binder full of business cards and medical records.  Mary recommended that I type up a one page "medical resume" with his doctors contact info. on the back and put a copy in my wallet so I will always have it. Of course I think to my self..."in my spare time". But really it is a great idea and I will try to get it done soon. The next hour she worked with William. Her primary focus at this initial visit was pulmonary health and airway clearance. She spent some time observing and measuring his chest and breathing for a base line.  William has a pectus excavatum (inverted chest) and paradoxical breathing. Then we spent the remainder of the time going over assistive manual cough techniques and chest physical therapy. Overall I was impressed by her knowledge and we will follow up with her in the fall.

GI: Today we are following up with William's GI doctor.  William vomits nearly everyday and we have learned that typically children with MTM get a Nissen at the same time as the G-Tube.  William did not get a Nissen when he got his G-Tube. We are going to discuss the Nissen.

Friday, June 15, 2012

Great day!

Today is going great!
  1. I recently asked for a new Early Intervention Developmental Therapist. Our new DT came to work with William today and she is amazing! I am so happy she is on our team! Not only does she have a son with special needs, but she has an amazing resume and a wealth of knowledge!
  2. Earlier in the week I took Juliet to have her re-tested for her peanut allergy. They took blood to test peanuts and all nuts. (When she was one she had a bad reaction to peanut butter. The allergist did the RAST blood test and it resulted in a 4.41 which put her in the very allergic category.) Today the nurse called to let me know that all the tests came back negative and the doctor wants her to come in to do a "peanut challenge".
  3. William got his first chair.  (See picture below.) Well actually it is a "loaner" until we get ours.  We have William's baptism this Sunday and we asked the company if they could bring us out a "loaner" today and they did! We are excited to start taking William places and letting him see the world. 
I am so happy things are moving in a positive direction. It feels great to have some wins! Go Team Whiston!!


Thursday, June 14, 2012

Sleep study

Here is a picture of William just before his sleep study, relaxing while watching Elmo. I forgot to take a picture after they got him all hooked up for the night. He was not happy at that point anyway. Results in a couple weeks.

Saturday, June 2, 2012

Tons of appointments in June

June is a big medical month for William.

First, William has his second wheelchair fitting.  The vendor is going to loan us a chair while William's chair is being customized.  At this point, it appears that we will get a stroller type wheelchair.  We will then transition into a power-chair in a couple of years.

We have a sleep study scheduled in a couple of weeks.  The sleep study will not only determine if William is breathing sufficiently at night, but will also measure reflux.  William requires oxygen at night, but the study will determine if more oxygen or  ventilator / trach is needed.  They will also measure the amount of reflux he is experiencing.  If reflux is an issue, they will close the entrance to his stomach to prevent any acid or stomach contents from coming up.  William is doing very well and we are hoping that the treatment plan will be to continue with the current plan.

Finally, we are seeing the ENT.  William has had ear infections that are not going away with antibiotics.  He will be evaluated to determine if tubes are needed.

Overall, William is doing great.  His strength is improving and he is starting to roll towards objects.  He has improved ability to sit with significant support.  Hopefully the new wheelchair will allow him to sit-up for longer periods of time and view the world.

As we enter the warmer months we are now able to take William out of the house.  Last weekend I took him to Lowe's.  He was happy to see something other than the inside of our house.  I enjoyed watching him take in all of the people.

In the coming months we plan on starting a fundraising effort to aid the researchers searching for a cure.  Hopefully a roll out of this program will be ready by mid-July.





Friday, June 1, 2012

Rolling

We are so excited! William has been rolling to play with his toys! Yes, he got to this position all by himself from his back and he can typically get back to his back. Sometimes he gets stuck, but he never is distressed about it. He just lets us know vocally that he is stuck and always has a big grin.