Alex and Maddy

Alex and Maddy

Monday, September 7, 2009

Thank goodness the week slowed down a little after my last update! Bug and I desparately needed a reprieve. Wednesday I went to the MOMS club meeting. It has been over a year since I have been able to make one of these meetings. It was so nice to catch up with old friends.

Thu​rsday our beloved OT Liz came for her twice weekly session. I can already see the strides Alex is making with her. I am so thankful for her kind, patient way of working with Buggy. He truly loves her.

Friday and Saturday we just lazed around the house. Sunday was more of the same other then church. I have a cute story from church. They were short on Sunday school teachers this week because of Labor Day. So they were going to watch a movie. About half way through the service, I sent Bruce to check and make sure they didn't have popcorn out. Which Buggy is severly allergic to. (Thank you Kristin for always looking out for Alex) So Bruce comes back shaking his head. I whispered to find out what the problem was. His answer...Bu​ggy was sitting with a "big girl" and kissing her non-stop! I had to chuckle! That is my ladies man. I quickly figured out that it must be Brooke, his favorite "helper" who took him under her wing a few years ago.

Medical​ly we continue to due pretty well. There are a few concerns but mild in the grand scheme of things! One is that Alex has been extremely pale for a few weeks. Like think ghost white! In the past this has always signaled the need for a transfusion. However, his blood counts have looked okay so we have no reason behind his poor coloring. The second is his liver numbers continue to not be great. I think this is something I am just going to have to adjust to. I believe this is probably his new "norm". The last is something that I am waiting to here back from the doctors on. When Alex first started having his clotting issues, GI assumed his vitamin k was deficient because Vitmain K is needed for your coagulation factors (to make your blood clot) and is produced in the liver. With his liver not doing well it would make sense that he didn't have enough vitamin K thus causing bleeding issues. They gave him an infusion in the hospital, but when his clotting numbers didn't get better they through out the vitamin k theory and called in hematology. He was given plasma to replace the factors he was deficient in and haven't had clotting issues again. However, we added a vitamin K level to his monthly lab draw. In July, his level was 1112 (this was shortly after the infusion). In August, it was 535. This month came back at 271 and we are starting to see some bruising again. So I am thinking that Vitamin K deficiency could really be the problem. This would be both good and bad. The good is that we can treat it and keep the bleeding issues under control. The bad is that it is an infusion that has to be given in the hospital due to some serious side effects if it isn't given correctly. Anyway, I will keep you updated as I know more about this issue.
The last medical issue is one that seems we have dealt with Alex's whole life. He is once again losing weight instead of gaining. Alex was 35 lbs when he came off of TPN in April. As of yesterday he was 31.8 lbs. We are not panicked as he still is playing and acting okay. It was a known fact that when he came off TPN he would go back to being slightly malnourishe​d. He just cannot absorb formula as well. However, I am not sure at what point we will need to intervene. Please pray for his weight to stabilize.

I think that is all! Phew!!! Labs are tomorrow so I will update after I have the results. Hope everyone has a wonderful Labor Day!

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