Day Twenty-Seven: The Last of the Weekly Blood Tests

We had a good weekend together as a family. Katie did wonderfully... which is becoming the norm now. Mark and I set tiles in the dog run and grouted them with sand this weekend so when we do get a dog, it can go do it's "thing" on the grass at the end of the dog-run and not get it's feet muddy. It was an ALL WEEKEND chore... and one that Katie volunteered to help with. We thought she'd help for the first few minutes and then get bored and distracted and quit. Well, she surprised us by hanging in there for a couple of hours... lugging sand back and forth from the wheelbarrow to us and back again. On Sunday, she helped daddy dig up some plants... transplant a few others... and feed the roses while I planted some fresh flowers about the landscape. We are continuing to marvel at how consistently well she is doing. Notwithstanding she has her blow ups here and there throughout the day... she is able to recover herself quickly and redirect her energy effectively and pull out of the anger. We can live with that.

Mark and I realized this weekend that our ages (50 and 51) have more to do with our bodies than we had realized. I can barely walk and sit this morning because I am SO SORE from all the yard work over the weekend... and Mark is also making painful noises when getting up or down from his seat. When did we get old??

Katie had her last weekly blood test this morning and did well. Now she won't need to get them for 4 week intervals... and then later, it will be once every 6 months.

Mark and I came together this morning because we have a genetics appointment here with Katie at 2:30 today. He has brought some job-hunting work to sift through today as we wait for Katie in the family room.

I'll let you know what the outcome of that appointment will be later this evening.
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We met with the geneticist who explained to us in depth about the Mobius Syndrome that Katie was born with. It is NOT genetic... simply an unexplained formation as a fetus (congenital) which is incurable and will be with her for life. Her 6th and 7th nerves in the frontal lobe of her brain are paralyzed which caused her right side to be smaller than her left... and because of a restricted blood flow due to those palsied nerves, it caused her heart holes, high palate, deformed ankles and feet, learning and behavioral problems and the entire right side of her body to be much smaller than her left. They told us that her brain stem is more than likely also deformed... and the geneticist can't wait to see the results of her brain MRI on the 26th of this month. He was thrilled that the medication we have her on is helping her to the degree that it is... but he said that her behavioral problems will be with her for life.

What comes to mind at a time like this is.... "But God....in His infinite mercy.... " (and I believe that He will finish that sentence in His perfect time).

On the way home Katie had a huge anger fit due to her not being able to get her knitting project just right... and it lasted all the way home... banging... crying... hitting... loud crying...and then continued several minutes after we arrived. It was a hard evening for her... but eventually she 'righted' herself and was able to redirect her emotions elsewhere. Katie and I played cards before bedtime (she is becoming a shark at Skip-Bo) and then went to bed to write and journal for a while.

Mark and I are pooped. Tomorrow Katie sees her orthodontist about getting braces on her teeth. Wednesday morning is her Sleep Deprived EEG.... so needless to say, Tuesday night is going to be one of the biggest challenges for us to get through... she can only sleep a maximum of 3 hours that night. I told her she can go to Denny's around 3 AM and order anything and everything she wants to eat... whatever it takes to keep her awake till 9 in the morning. Ugh... just thinking about it is making me tired.

Nightie night, friends. Will chat with you tomorrow.

Chow 4 Now.
Susan