MJ and Family Update

[MommytoMJM]

I posted this in Community Board too, but not sure how many of us here read that board and since you all have been so supportive and helpful I decided to post it here too....

7-6-05

Hi All-

Here's the latest in the saga, some good, some so-so.

MJ is still having seizures, they are all still petit mals, so no more ER trips yet. She had quite a few over the weekend. We did have to make a short visit to the First Aid Station at the Studios on Monday July 4th. She fell asleep for a nap so we ducked into an air conditioned restaurant to let her rest. When she woke up she was crying and saying owie, but couldn't tell us where or what hurt. With a not so verbal child it can be really hard to discern what is going on. We took her to FA, they gave us some Tylenol for her, she was a bit gassy and tinkled through her diaper necessitating a change of clothing for her (fortunately we had a close parking space to get her some new clothes, unfortunately I had no such luck for myself.....note to self, bring change of clothes for mom and MJ! LOL) Our friend (and an off duty CM) who was with us (Christian) came in and made her laugh and giggle and we got out of there in time to view the parade.

My mom got a clean bill of heart health after her test yesterday! Yay! Apparently the artery that showed up as blocked on the first test was one that was bypassed last year during her double bypass surgery.

MJ's wheelchair fitting was yesterday. It is a super deluxe model. It will recline, have a desk on it, an IV pole for her feeding pump, etc.... It will be blue with glitter in the paint and have her name embroidered on it. It will be 2-3 months before we get it. It is good that we are going to be able to get it, but also sort of sad because it means that they really aren't expecting her to improve all that much as far as mobility goes. She has about 20-30 good minutes of mobility right now and that is about it.

I have lots of new stories I need to type up as usual. I am sorry I have been so slow in getting them done, MJ hasn't been sleeping that well and it is hard for me to focus and type up stories with her awake. We got to meet some new friends, saw lots of old friends, saw great fireworks, saw Tarzan Rocks! twice, visited all 4 parks and got to witness the 20 year anniversary of Tinkerbell's first flight (July 3, 1985 was her first flight)

Thanks again for all of your support, I am looking forward to all of the upcoming meets that I have planned with various people. My next update won't be until after we see the neurologist, unless there is some extremely good news or any not so good news. I will instead devote my time to trying to get the myriad of magical moments stories up as soon as possible.

 

[roseprincess]

Thanks for posting. Sounds like your WDW trip went fairly well.

Rosemarie

 

[SueM in MN]

Things move so fast on the Commuity Board that unless I can get there a few times a day, I miss a lot.
Sounds like a pretty good trip.
About the walking part. My DD used to walk with a walker up until she was about 10. But, she was so slow (unless she wanted to get somewhere, then she could really fly, but not for long). She was very unsteady looking and the way she was walking put a lot of stress on her wrists, knees, ankles and lower back. Once she moved full time to the wheelchair, we did see some advantages. She was more mobil (just not walking), she didn't get any pressure - whcih was a problem when she was using the walker and the school people wopuld sometimes just plop her into a regular school desk chair, and she could do some errands where she carried things.
So, mixed blessing.

 

[Nanajo1]

Thanks for the update. I'm glad you had a good time.