Hi Suzanne, How is everything with you guys? So sorry we had to miss the conference this year. I see the oligos are going into further clinical trials which is good. Any new supplements or drugs that people are trying?
Jake is doing pretty good. Had the heel cord lengthening last Nov on one leg. Was hell getting through the recovery but he can walk much better. We took his deflaz dose down from 39 mg to 30 mg and that has helped with side effects he was having s.a. headaches hyperness etc
When do you back to Cinci?
I finally have the chance to catch up and say how much John and I enjoyed talking with you and your husband at the conference. I would like to come to a NJ FACES meeting, and just joined the group. I remember your mentioning that Mike's mom might be willing to exchange contact info. with my mom from a grandmother's perspective. My mom had expressed interest in that. If she is comfortable, my email is email@example.com. Thanks again for helping us get out bearings - the comference was really so helpful. Take good care and enjoy the rest of the summer, Lauren Fritz
Hi Suzanne! What do you think about Human Growth hormone? Jake would love to be a little taller but we wonder at 14 will it take away his walking?? Have you considered it? Going to Cinci next week. Rosy
I noticed you are not yet a member of NJ Group (you should join). I sent an email about Wash DC. to the group, but have not heard back from anyone yet. I know you always have a lot of people go to Wash. Do you or anyone else need a roommate. I sent the message below to the NJ Group.
I booked my hotel room in Wash DC. I'm not sure yet if my husband will be attending. If he is not, I would love to cut down on expenses and share a room with someone (female of course . . .)
Did anyone else make plans yet? Maybe we can try to coordinate carpooling or Amtrak. The cutoff date for making the hotel reservation is Mon-Jan 12th. Who's all going?
Merry Christmas Suzanne and both Micheals! Miss you tons and need to catch up! I think I lost your phone number, but I would love to catch up on the phone. Call me over the holidays if you get a chance, if you get our voice mail, leave me your number so I can call you back! Love to you all - michelle
Thanks for telling me about taking extra Vitamin D. I've forwarded this to Heather so she can read it because I don't know how much calcium the chews have in them.
Jacob is always constipated and says his rear end is sore. Have you dealt with this yet and what do we do for it?
I've suggested that they keep taking Jacob to Cinn at least once a year because Dr. Finkel does not seem to be up on the newest things or else just isn't telling us.
His last visit a few months ago he told us that steps are fine for the boys even though most people don't think so!!!! I don't know what to think of him anymore. There's always a problem with them not remembering we have an appointment, losing Jacob's records, trying to get a call back, etc but they are the closest to us if we would need them in an emergency.
I'm glad to hear that Michael is doing so well, that is just great:) He really looks good in the picture.
Does he have a stop codon mutation? It seems like those boys with that mutation seem to walk longer?
Jacob's mutation is a deletion of 42 and 43 and we have yet to find anyone else with the same one. Kind of frustrating even though we know that really doesn't mean that they would be able to be compared to each other.
We have just been running ragged all year. I think that we are still in the shock mode and we are trying to fit so much into Jacob's life while he can still walk.
He had a bone density scan done a few weeks ago and it showed some bone loss so now he's on extra calcium to try to build it back up.
Just seems like there is never a dull moment!
I will definitely contact you after the holidays. Jacob is starting to ask more questions and we could use some advice as to how to handle it.
I've been looking for you to join:) We met last year in Cinn. Jacob is my grandson. I still have your phone number but it seems like life is soo busy anymore. Maybe after the holidays we can get together.
How is Michael doing? I see you mention Cooper. Is he a service dog or just companion for Michael:)
Happy Holidays to you and your family and here's hoping that wonderful things will be happening for all of our boys next year.