There has been so much I have been trying to organize in the past few days that I’m just going to jot it all down now, and I will come back and elaborate later on.
- Visit with GI doctor. Dr. V., Hannah’s gastro doc, is concerned about her old liver tests that showed a rise in two key areas (GGT and ALT or AST). They were never followed up on. He also felt that Hannah’s liver was actually bigger than last time he saw her (4 months ago), which shouldn’t be happening since she is on the Cerezyme. So I am working on trying to get an appointment with Dr. Carter, Hannah’s hepatologist, but I am having a difficult time getting through to set up the appointment.
- Got the EEG scheduled for next Friday, but I have yet to get the BAER scheduled. Dr. B. “reminded me” today to get that done. Also, I’m waiting to hear back from the TCH “Blue Bird Clinic” (Neurology) to schedule a consultation with them, as Dr. B. thinks it is a good idea to get a local neurologist as well as Dr. Schiffmann.
- Found a SibShops workshop in our area for Ethan and Abigail. Unfortunately, it is just once every other month for a couple of hours, but it is a good start. I also have a couple of places I am trying to work with in our area to get them assessments for counseling. Unfortunately I have not been able to find anyone who specifically works with siblings like I had hoped, but hopefully there will be someone who still will be able to help them.
- Working on getting the NIH scheduled again. So far, we are tentatively scheduled for the week of 2/22. But I am having trouble getting firm dates, which stinks, because my inlaws need to know because they offered to come stay with Ethan and Abigail here while we are gone.
- Research stuff: Have quite a few conference calls and communications set up over the next 7 days. Hopefully we can kick start nGD awareness and research again! Need to find time to get my background work done before then.
- Hannah’s physical therapist is ordering Hannah a gait trainer! This is great news, as I really think strength is Hannah’s biggest obstacle to being able to walk on her own. So once we get this, she will be able to move somewhat freely around the house and when we go out. I know she is just going to thrive on the independence of this, because she loves her little toy walker so much.
- Nursing home, take 2. Unfortunately the place closer to our house would not work out for us to get Hannah on the MDCP/Medicaid program, so we have to try again to make the drive up north. Even though it is normally a 4-hour drive, we are going to actually leave the day before (Friday after the kids get out of school) and spend the night along the way. We just HAVE to get this done. I just hope we can make it this time without too many hyperventilation episodes.
- Still working my two jobs, which total about 30 hours a week. My med transcription job is scheduled from 6 am to 2 pm on Saturday and Sundays and 8 pm to 11 pm on Tues and Thurs nights. My other job, which is working for an internet contractor, is only 10 hours a week, but I am finding it so hard to find the time to fit it in!
- Just got Hannah’s new SureStep SMOs (braces). Hello Kitty pattern this time (Abigail picked them out). Her foot has grown quite a bit in 7 months!! Because her other ones were too small, she hasn’t worn them in a month or so, and it is going to take her a while to get used to them again. But I KNOW it will definitely help with her walking and standing, as she has definite ankle rolling when she stands and tries to walk.
- The gagging/choking issue. Yesterday in OT, we let Hannah try goldfish again (something she has eaten for months without problem until recently), and for the third time in a row, she had a gagging/choking episode. Fortunately, it didn’t last that long (maybe a minute), and she was able to get herself out of it on her own without oxygen or anything else. Her OT feels that it may also have something to do with the buildup of saliva during that time, as golfish are very salty, and she says “from where the sound was coming from”, she feels that may play a part in things. She definitely thinks it has to do with this progressive hypersensitivity defensive gag reflex. The two episodes that required 911 were both when she had cheerios (we know she was eating them on the first one, but we didn’t see her eat it on the second one although she did have them in front of her and we were at the restaurant). Going by our OT’s logic, cheerios require a lot of saliva to break down because Hannah still doesn’t chew. They started out exactly as the goldfish episodes, but they got progressively stronger, and she couldn’t get out of them without help.
I’m sure there is more, but this is all I can think of off the top of my head!
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