The week started a little hectic, due to a Monday appointment at 2:00, right in the middle of my last class of the day. Thankfully, I have great teacher friends (thanks again Malia) who offer to cover my class for no pay so I don't have to take a sick day (I only have seven left for the year).
We made it to Bronson with time to spare - there wasn't vomiting in the car, no pump malfunctions, and Allison was in a good mood. The doctor came in quickly (Peds Gastroenterology - one of my favorite guys) and was very encouraged to hear that Allison is off of the Erythromycin (which was prescribed to encourage her stomach contents to be pushed through, since her stomach contents seemed to just hang out and never digest onto the small bowels). I suggested we take her off of Zoloft (anti-nausea med) and switch to a different formula in anticipation of her being diagnosed with glutaric acidemia type 1. He commented on my aggressive enthusiasm, but convinced me that we are so close to figuring it out that he wouldn't want to change her diet and her medication that have been constant for so long. He explained that a change in her diet or meds could change her symptoms, which could throw off our search for a diagnosis. I agreed.
He also said we need to narrow down the amount of specialists we see. And it is true. We've seen five neurologists, two rehab doctors, two ear, nose, and throat, two opthamologists, and we have a referral to see another GI doc at U of M (one who will coordinate with our new ENT at U of M and Speech Pathology at U of M) even though I love our GI doc in Kalamazoo. I asked for a referral for a second opinion with surgery, since Allison's Nissen fundoplication surgery back in January seems to be commented on all the time. If her reflux is getting all the way up to her nose, it seems like that nissen doesn't seem to be as tight as it should be. I would not be a fan of repeating that surgery though. She would have to have the original wrap taken apart (3 hour procedure) and put back together (another 3 hours) just for it to be a couple of milimeters tighter. But if her little esphogus and nasal tissue is being damaged while she is only one years old, then I guess we do it. I haven't heard back about this second opinion yet, so I might need to call and check on it.
Then the dietician came in. We reviewed Allison's diet, her weight gain, and her sudden shot to the top of the growth chart. She recommended we have weight checks every few weeks at the pediatrician's office, and then call her with Allison's height and weight, just to be sure she isn't gaining too quickly again. This isn't a hard thing to do, but it's another thing to do...
There were not any other appointments besides two Physical Therapy sessions and one Occupational Therapy session (our last with Angie, who decided to take a job closer to her home - she will be missed - she has worked with Allison since February). Baby girl continues to get stronger, and she actually is responding to the command of "up" when her Physical Therapist helps her do sit-ups. Her core strength is increasing; I'm going to go out on a limb and say she will be sitting unassisted by Christmas. What an accomplishment that will be.
Allison did need some lab work done this week. Some of the labs were routine well-child things, like lead checks and such, but one of them was something the Mayo doctor wanted repeated in a month (yeah, it's been a month since we were out there). I got a call from the pediatrician's office that all of those came back normal. I did play phone tag with one of Dr. White's nurses about Allison's muscle biopsy (taken in January) which is somewhere at the Mayo Clinic on ice, ready to be retested. She wanted to know if we had done anything with the last bit of info from Mayo, which states "recommended respiratory chain testing and chromosome sequencing on the muscle tissue". I did have questions about that, but I assumed because the tissue is already at Mayo, that the Mayo doc would be able to get that around without any Michigan coordination. The nurse said she'd figure it out. I haven't heard anything back about this, so I guess there is another phone call I should make tomorrow. Besides this information, I haven't heard anything new about the search for a diagnosis.
The best news of the week, perhaps, was the comfirmation that Children's Special Health Care will reimburse us for milegae to Minnesota AND pay up to $32.15 for each night we stayed in a hotel. Apparently Minnesota does not participate with CSHCS, so our co-pays for each appointment will not be covered. I'm not so worried about that $50-100, but the mileage, lodging, and parking fares that we will get back adds up to roughly $600 or so. This is amazing news! Good thing I was so diligent in saving and storing and organizing all the receipts from the week.
Saturday morning I took Allison to a local Peds Opthamologist to pick out frames for her new glasses. We waited forever, ended up missing kick-off (actually I only saw about three plays of the game anyway) but eventually were helped. The lady was unable to complete the order because the insurance website was down? and she couldn't figure out our co-pays for the lenses and frames. I'm pretty sure the $65 frames will be mostly covered, but the lenses will be costly. She will give me a call on Monday after figuring out our portion to contribute before she orders. I told her don't bother, as it doesn't really matter what it costs, we need it done. I think she didn't understand my comment. If she calls and leaves a message on Monday, and I don't get back to her until Tuesday, Allison's glasses may take another two weeks to get in - and I kind of think that is a bit long. What can you do?
The big kids went to the dentist on Friday with their dad. Three sets of x-rays, three sets of cleaned teeth, four cavities, and many lectures from the dentists. And we found out our new dental insurance sucks! Our old coverage used to cover 50%, this one only covers 20%. Might drop a G here. :(
The coming week contains two Physical Therapy sessions, one Early On home visit, one much needed dentist appointment for me (not sure when my filling fell out, but I can't eat or drink anything cold until they are fixed), and an appointment I am sssoooo looking forward to on Friday. We will be seeing Allison's local, original neurologist - who, I hope, will have a lot of insight on all the Mayo tests/possible diagnoses. This appointment was rescheduled because it was suppose to be right after our return from Minnesota, but I thought that would be pointless until we heard some test results. Although we don't have school Friday, I'm suppose to be running a day-long PD day for my department, but this was the last opening this doctor had until January, so I took it. I think my department will be just fine in my absence.
Unless I hear from Mayo, I don't have any plans to blog until after our appointment on Friday with the neurologist. Check back for an update Friday evening.
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