Back to reality!

So, we've been home for about 24 hours. In that time I've done two sink loads of dishes, three loads of laundry, have one sick kid and a messy house.

I have a lot to accomplish this week: Monday Allison is having a procedure done - so more fasting for another sedation. She is having her GJ tube button replaced with a bigger one - one that will accomodate her growing belly. We should only be at Bronson for half the day. But I have many phone calls to make during that time. I think I will postpone our appointment with her local neurologist because there really isn't too much to tell him until all the results come in. I need to follow-through with some custom seating for Allison, suggested by the rehab doctor at Mary Free Bed. I need to look into why our Mayo trip has not been approved by Children's Special Health Care, because we could really use some mileage and meals and lodging assistance. I also need to look into the Supine Stander - but I might wait until after Allison's OT appointment on Wednesday - I'm sure her therapist might have some ideas how to go about that. Then we see Allison's pediatrician on Friday for a well-child check (which will probably be more about our Mayo trip). We have two football games, one sedated procedure, two therapy sessions, and one appointment. Oh, and I do plan to return to work on Tuesday (staff meeting after school too) after missing six days in a row. I bet I will have at least 10 hours of grading to do. Oh well. Our Mayo trip was a success, and I still feel like we will get the big picture diagnosis in a few weeks. Then we can focus on treatment and recovery.

MAYO DAY FOUR - Results Day

We waited around all day for a 3:00 appointment, which didn't really give us too much information. The great news is that the MRI appeared normal. The guy who read it also got a hold of her last MRI, the one done in Detroit about six weeks ago, the first MRI that was "abnormal" (the one that appeared to have "abnormalities to the basal ganglia") but this doctor was not convinced that her August MRI was abnormal. So really, all four of her MRI's have been normal. This is great news! Unfortunately, this great news doesn't fix her problems, it just makes them harder to figure out.

The neurologist was encouraged about this MRI, but we couldn't leave the Clinic with a diagnosis, and I know she wanted us to give us one. Some of the urine and blood labs taken on Tuesday were in, but most of them were not. The ones that were in gave her some clues as to what Allison could have (which appears to be a chemical imbalance in the brain). It could be as simple as too little or too much energy being "fired" in her brain, which could be controlled with diet. It could also be as complicated as...well let's not go there quite yet. Every time the doctor gets a test result back which is abnormal, she will call us. If we don't hear from her on a daily basis, that means either things are coming back normal, or results did not come in that day. She is also going to send us and Dr. White a packet of her notes, labs results, basically everything from our Mayo visit, in the next week or so. This will help Dr. White order follow-up tests if needed.

We discussed options to control her hypertonia - a new med, muscle relaxer botox injections, or increasing her current med. The doctor was glad we consented to the skin biopsy. Having a skin sample will allow the lab to grow Allison's skin out to the size of a pancake, which they can use to retest anything that comes back abnormal - instead of us having to go get more blood drawn or a catheter placed (which is terrible on a baby girl, by the way).

In three weeks we should have a diagnosis - or at least be really close to one. Until then we keep doing what we are doing: going to therapy, seeing our local specialists, and treating the vomiting with tons of meds. But again, everyone we have ever seen is soooo surprised to see Allison "so alert" and "so engaged". Every doctor is encouraged that cognitively she isn't too delayed at all - and because of this, she has a real fighting chance at a quality life. She may struggle physically, but I think she is persistant and determined enough to figure it out. Of course, one of my goals it to get her off of this feeding tube, but that may have to wait a bit. I'd also love to see her mobil, sitting, crawling, walking, but I can be patient. The one thing that is fairly urgent is controlling her vomiting. But hopefully all of this will look differently in three weeks. Still hopeful.

So we have left the Mayo campus, disappointed because of the question marks still, but encouraged that the question marks are just temporary. We are excited to see our big kids, who sound tired and sad, but have been reported to have been really good all week. We hope to make it home in time to pick them all up from school - what a surprise that would be! It all depends on the Chicago traffic. And we lose an hour going back to Eastern time.

Next week we see Dr. White for a well-child, so maybe some results come in before then and we can talk about them. He also will have the pleasure of taking out her stitches. Better him than me!

Mayo Clinic Day Three

We had an early start today, with an appointment at 7:45. We left our room at 7:36, took the elevator down to the "Subway" level (underground), walked across to the Mayo Building, and took the elevator up to the 16th floor. We met the rehab doctor, who was very encouraged by Allison's "level of engagement" and the fact that she opens and closes her hands when playing with toys. She wasn't all too cooperative when the doc was playing with her legs, stretching and pulling her in all directions. But overall, we learned some things from this appointment.

The highlight of the day, for me anyway, was the appointment with Physical Therapy. I wasn't too excited about it before we got there, because Allison has had about 100 therapy sessions. But WOW! this gym was amazing. We were introduced to tools, vests, gadgets, toys, sitters, and standers. We definitely need to look into these things because we were amazed at what Allison could do. She was strapped into a spandex vest that helped support her core. Because she didn't have to concentrate so much on holding up her core, she was much more accurate and active with her hands. She even had much more head control. But when she was put in the "Supine Stander" she really impressed us.

The therapist explained that muscles strengthen and bones grow when you put pressure on them. If Allison doesn't bare weight on her legs, her bones, most likely her hips (which we are cautious about anyway), will continue to be weak. But she doesn't have the control to put pressure on her lower body - until she was put in the stander. We got her all strapped in, in a horizontal position, then we slowly put her closer to vertical. She kept lifting her head, like she wanted to be straight up and down. The therapist thought she was ready to "stand" so she put her up to straight. We put the tray on the apparatus and put a toy on it for her, and she went to town. She was so active, controlling her head, and being accurate with her hands. Greg and I both agree - we need one of these at home! I will look into it when we get home. I'm sure it is costly, but insurance should cover most of it, and if not, I'll get a weekend job!

The worst part of the day was the skin biopsy. I remember when my mom had one on her heel - and it wasn't pretty. They took it from the inside of her upper left bicep. She was numbed (which made her cry so hard she nearly held her breath for a minute), then the doctor came in and took the chunk out of her arm. And by chunk, I mean chunk - like a pencil eraser. Then she was sewed up with two stitches. I've seen a lot of things done to her - but I've never seen "meat". I'm glad I was on the feet end of her and Greg was on the head end. Those stitches need to come out in 10-14 days. We see Dr. White in 9 days - maybe he can take them out then.

After our traumatic morning, we headed back to our room (via the subway - it was only in the 40's today) and took a family nap. It was wonderful. I think we all slept at least two hours. Then we were off to dinner, Applebee's, where we called the big kids, and then a little shopping before a perfect dessert of Coldstone ("Chocolate Devotion" is amazing, by the way). Back to the room by 9:00 (central time). Allison is now down for the day - and Greg is pretty close.

Tomorrow we have our final appointment in the afternoon. We are meeting with the same neurologist we met on day one. She will go over the MRI results with us, as well as any labs that have come back. I'm hoping that we leave here with some answers. I have no idea what to expect: Will we be asked to come back in a month, 6 months, a year? Will Allison need more tests back in MI to follow up the tests that were done this week? Will we get a diagnosis? Will it be curable or at least treatable? Will she have a quality of life? Boy, I wish this appointment was not at 2:45 in the afternoon.

We are checking out of this hotel tomorrow, since we think we will be done by 5:00 here in Rochester, and if we can put in 3-3.5 hours of driving, we can make it to Madison, WI, which will make our drive Friday only about 6-7 hours instead of 10. Maybe we can actually stay in a hotel that has a little bit of walking room between the furniture - and a continental breakfast.

Please continue to pray for wisdom for the doctors and determination for Allison. So far, she's put up a good fight.

Walking around downtown Rochester

While looking for a place to eat dinner, we snapped some pics of downtown Rochester, the Mayo Clinic, and Alli J. The wind was a little chilly, but Alli hung in there and we walked around several blocks before coming upon the best pizza place I've ever been to. ZPizza - we had the "Mexican". It had avocados, tomatoes, chicken, and onions on it.