Journal

Friday, August 27, 2010 4:00 PM CDT

June 2010
Well again I have taken a very long time to update.
Jacy and Jo attended prom on May 7, 2010. They had an awesome time. I am sure some of you heard all about it on facebook.

I will just touch on both girls and how things are going for both of them.

Jacy has been doing ok, not great. There are alot of issues that come along with FA and age. These kids have such a horrible time just functioning, much less normally. Jacy has an appointment to see Neurology this week. She has issues with dizziness, loss of balance, changes in eyesight, feeling lightheaded, tingling in her legs, and numbness to name a few. We have been exploring these issues for a while now. She can no longer wear any type of pants other than extremely soft, without crying. She has not been in a pair of Jeans since Christmas. It makes it hard, when most of the pants she can wear are in the form of Pajama pants. Jacy and Jo had an appointment for hemoc on Friday the 21st and Jacy fainted. Very odd, we think it was anxiety. She has had increasing anxiety as she has gotten older. She used to go to her appointments and watch movies and have fun with the nurses and doctors. She was carefree! She has never had a problem with bloodwork, very used to it, she still does well with that. Shots on the other hand have become a major issue and not just when she is getting the shot, it is moreso when Jo does.

Jo has been doing well. She still has these terrible disks in her throat. Jo has been seems by dental and authorized for surgery to remove the second set of bath teeth, all 4. They just have to watch her ANC (the infection fighting portion of your white blood cells), otherwise she is good to go. With both girls have a low immune system due to their B lymphocytes and NK cells barely functioning we have to be extra careful.

They both are vitamin B12 and D deficient, I am also. This seems to run in my family, even aunts and cousins. We have an absortion issue. They have been on supplements and shots.

I have started college again and loving it. I have decided to go ahead and get my Master's in Human and Community Service focusing on business and Non-Profit. My Bachelor's had a wide focus, based on Business, Sociology, and Women's Studies.

Current August 27, 2010

Well I have been horrible at this. I will finish this and post it no matter what!!!
Well we have had a few weeks with alot of appointments for our regular visits, 3 mo, 6 mo, or yearly. We have been at the hospital daily since 8-4-10.
We are finally getting to the point where we will get back to 2 a week.

I broke my foot on 8-2-10! Been fun! Possible 2 to 8 weeks left.

So Jo has been doing pretty well. She still has these horrible disks that come from her throat area daily, sometimes more than once a day. They gag her, sometimes while getting them out she vomits. I know TMI huh! Anyway they think they have to do with her Acid reflux. She has it pretty bad, she is on 4 pills a day and as much as that may seem, it works for the reflux.
She is still doing well on her blood counts.
She has needed to get the 4 back teeth surgically removed for a few months now and we are finally going to get that done, consult is the 2nd week of Sept. These for teeth are very painful for her little mouth. They cause her so much pain. The come in and go back out, the cut her cheeks, and so on. She can not eat when she is in this pain and then loses weight. She doesn't have any to lose (She is 78 lbs,but gets down to 71 or 72 lbs), so bad situation overall.
Her pulmonary situation seems to be the same, she has 70ung capacity and when she walks her Oxygen level drops to 93She has her yearly test for pulmonary function within the next couple weeks.

Jacy has been same oh, same oh. Since I last updated she has been diagnosed with Nueropathy (mostly legs)and orthostatic hypotension. She has been this way while sitting or standing since 11-09. They have given her a new medication to help the blood vessels open up more. She will see nuero and they will continue to do tests to located the issues causing the orthostatic hypotension. She has also seen her regular doctors. Blood counts are same. Her Hematuria (Kidney bleeding) is still the same. Lung capacity is worse, but can not test her pulmonary function due to her orthostatic hypotension and shortness or breathe. They will possibly do a CT if she can't complete it within 6 months.
She has been doing occupational therapy weekly for her hands in hopes to strengthen them for surgery. She needs a ligament lengthened in both hands and the web space widened. This has caused her pain for many years. We have a follow up in a couple weeks to discuss surgery further. Her OT is doing well. She loves it! we got a few adaptive devices for to help relieve stress on her hands. She now has a zipper puller, button assistant, pull on and off stick for pants, and a sock assistant.
She may also be getting a writing device. She loves the computer and it has been recommended she use this instead of writing if possible. The computer requires less muscle and hand use, which will tire her hands less.

So we will see Hematology/Oncology (every 3 mo.), Eye doctor, Neurology, Orthopedics,Cardiology, Ear nose and throat, Oral surgery (Jo will see 2), Pulmonary function, Allergy, Gastroenterology, and get their bone marrow biopsies within the next 2 months. Also, we will see the psychology and OT folks weekly. Most of the time we do not make it to our year mark before things come up, but we try.

I will update sooner next time!!!! Sorry for the book.

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