Progress.....

We had to tell Grouchy and my precious mom goodbye last week. Very sad to see them go, but that means I can get everyone back onto a routine and hopefully get some homeschool lessons rolling. We are about half way through our school year as far as completed lessons, but we have been taking lots of time off with holidays spent in Louisiana and lots of company. No complaints though, because those things are part of why we LOVE to be able to homeschool!!!

A couple of pretty great things have happened in Garrett's life lately, although I will not share the new, frustrating behavioral concerns in the is post. First, he started climbing out of his crib about a year ago, but I talked to him and told him he could get hurt climbing out, and that was that. Well, last week he started it again, and one night he said he was "ready for my nap," and next thing I know it is very silent and he is missing!! Addie, Ainslee and I searched the house, and I was about to call my mom at our guest house to see if he had wandered over there, but one last time I checked his room and he had crawled INTO his crib and GONE TO SLEEP!!! Little booger!!! SO I took the front section off of his crib, making it more like a day bed...a BIG BOY BED, and the first couple of nights he woke up a few times and turned on all of the lights in the house and began playing with his wooden blocks making "tall buildings" and then knocking the buildings down on the HARDWOOD FLOOR!!! Talk about jolting me from deep sleep!!!! Last night was better. He woke up once, too early, then I explained for the 50th time that he could get up when my alarm went off, and he stayed in bed until I got him up!! YAY!!!

Then yesterday morning I got an email from Dr. Koenig's nurse that Garrett's urine had protein in it when it was tested two weeks ago and they she wanted that to be repeated here in Idaho. So we scheduled to drop by and pick up a cup and the pee-pee bags we previously used to collect his urine. It looks like a baby bottle liner but has adhesive and an opening around the top to stick to his....BOY that has to HURT!!!!! He HATES them!! I picked up the "stuff" and headed to the local McDonalds to let the kiddos get lunch and play in the large, nice, new, clean play area there until he peed. I tool him into the bathroom and explained what we had to do, and he told me he would pee in the cup this time. Last several times he would not. SO he tried, but no luck. We gave him more water and let him play, and the next try, he didn't pee, but he had some great farts and thought that was HILARIOUS!!! After entertaining himself while I squatted and held the cup, we left the bathroom, gave him more water and let him play. Try #3 he had even more gas and could hardly stand up because he was laughing so hard. He almost knocked me down onto the bathroom floor falling into me....GROSS!!! Finally, try #4 produced fabulous, award-winning gas AND a little urine...MISSION ACCOMPLISHED!!!! We returned the sample to the office and then headed to the YMCA to play for the while before piano lessons.

Today the pediatrician called to check on some referrals we are working on for neuro-psych and PT, OT and speech, and she said the urine had some protein and trace blood. She faxed everything to Dr. Koenig and started working on referral for a nephrologist, thinking that might be added to the list of appointments we need to make. Dr. Koenig will let us know the plan soon, I am sure. I think this may not be a big deal, but sometimes Mito affects kidneys, and I think I have been in serious denial about his diagnosis since we received it in June. This is a progressive form of Mito that we are dealing with. He only has 53% of the mitochondrial DNA he needs to function, and with a depletion, that means he was born with 100% or close to it, and now it has been depleted by about half.....time is our friend and our enemy. Not sure if I am going to come out of this denial, but I think I have to. This might be the beginning of that part of it......I am sure a blog on that is brewing.

Garrett is still enjoying school and is very well behaved there. At home.....different story, but we have to all go through some counseling/educating in the near future so the whole family can best know how to teach and handle him.

Went skiing with the girls today and had such fun. The girls had a lesson and I listened in. Then I got to go up a few times with the instructor after lunch and work on more green slopes and a blue...FUN!!!! Our instructor, Bill, is one of the many wonderful adults at our church who work in children's ministry. He teaches the girls and they love him. He was so wonderful with them both!! We plan to get more one on one help and all get better and learn to ski the WHOLE mountain!!! We may go back Friday and take Garrett. We will see how brave I feel then!!! Might wait til Grouchy is home before that happens!!!

Godspeed and please continue to pray for our inpatient Mito friends and our dear friends, the McAlister family.
Clara-Leigh