Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, February 10, 2016

We're Home!

I don't have time to post pictures now, but rest assured we had a great trip. The temperatures in the south were perfect for Angela who has anhidrosis and cannot handle the heat of summer at all. We were at a couple different beaches in GA and FL, then headed west to TX and came north from there. We did get trapped in IA overnight due to a winter storm that shut everything down, including the interstate. We found ourselves in a seedy motel to wait it out.

We arrived home at 1:30 yesterday (Tuesday) afternoon. Dean and the kids got out of the van at home, and I started running errands. Picking up new meds for Angela, groceries for home, then parent teacher conferences for Audrey and Amos, and an IEP meeting for Asher.

Today is Audrey's surgery. She'll be having bilateral knee reconstruction along with an ABR (type of hearing test) This knee surgery is the second step of the process started last spring. There has already been a huge difference made in her ankles and knees. Now its time to tighten everything up, place some bony parts she is lacking, and get her back to running. And let me tell you, this girl loves to run! This process has gone much slower for Audrey than expected because she isn't growing very well. She has only grown 1 1/2 inches since she came home almost two years ago. When she wakes up she'll have casts on both legs, from ankle to hip. She'll have those for six weeks, then knee immobilizers for 4-6 weeks after that. This should all prove to be very interesting! Thankfully we never moved last summer, so we're still in a house with only a couple of steps to get Audrey's wheelchair up and down.

Abel also had hardware placed last spring but he grew very rapidly so most of his hardware was already removed. He still has one screw in one ankle that will probably be ready to come out in April. Luckily he will not need any further work on his joints!

On Friday we meet with Angela's doctors at the University of MN to discuss if they came up with any ways to fix the portal shunt inside her liver. We are hoping they came up with something!!!! When they thought she only had a urea cycle disorder she was admitted to the hospital if her ammonia levels were 50 or over. When she was discharged almost two weeks ago she was over 125. A lot of people with liver disease can run much higher, but it is very unpleasant. The migraine from high glutamine levels is constant, and, for Angela, it makes her very aggressive and irritable. But her doctors made it clear, there is no reason to admit her now unless she has a seizure or falls into coma again. In the meantime we do a constant dance with her protein intake, calorie intake and fluid volume, and we seem to have found a good routine for now. 

1 comment:

Heather said...

A busy few days ahead, for sure! Glad you got some relaxing family time and warm weather! Hope all goes well with Audrey's surgery!