Alex and Maddy

Alex and Maddy

Thursday, April 23, 2009

What a blessing this time at home continues to be! I haven't updated because there is NO news!!! Do you have any idea how many times in the last year I have longed for quiet, peaceful times at home with no news!

Let's see... We were all really sad to see Grandpa off Monday morning! Alex had so much fun with him. We can't wait for him to come back. Alex actually asked him to move in with us.

Monday was Horseback riding. Alex really enjoys riding. We are working on some "actual skills" now. He is learning to use his reins to stop and turn. He is also trying to build up some leg strength so he can hold his butt off the saddle. When he can progress on these things we will move him to a bigger horse and start trotting.

Tu​esday we saw Dr. Benzick, our beloved pediatricia​n. It was so good to see him and nurse Judy. For so long they walked every step of this journey with us. They were so loyal and steadfast in trying to help us figure Alex out. In the past year, we haven't seen them nearly as much. At one point we were actually seeing them weekly. So it was really nice to catch up. Dr. Benzick was thrilled with how Alex looked. He has gained weight since they saw him last and just "looks" healthy and happy right now. He was in 100% agreement about school or the lack thereof. So I have found a sense of peace. I trust Dr. Benzick implicitly. I know he has Alex's best interests at heart. He also sees "normal" kids so he comes at things from a more normal perspective then Dr. Koenig. So while I don't trust one more then the other, it is nice to have both opinions.

Ye​sterday, we ran labs in the morning and then played with Allison, Brookie and Peyton. I had to chuckle to myself yesterday. For a long time, Alex plain out didn't like Peyton. She would drive him crazy! The last year though she is growing up and we had seen some improvement in their relationshi​p. Well, yesterday there were times when Alex and Peyton were playing together and Brooke was by herself. Allison- Did you ever think we would see that day? All in all, the three kiddos had a great time. Allison and I always love catching up. The relationshi​p with my playgroup girls is such a treasured one. It is so relaxed. Because we have spent so much of each others lives together over the last almost 5 years, it just "is". We are comfortable in each others homes and with each others kids and relaxed is the best I can describe it. But boy do I need it!

Labs were awesome (for Alex) again yesterday!!!! We still have a few things off, but I'm not sure we'll ever have totally normal labs. His liver numbers and triglycerid​es while still high are trending down. His pancreas numbers are normal!!! And the most exciting for me...his blood counts held steady this week which means the procrit may be starting to work. I would be ecstatic if we could avoid transfusion​s!

So now for my big news... We are going to Mimi and PopPop's next week!!!! I am so excited. This has been a thought for a long time. Aunt Jenn-Jenn and Skye-Skye have had a trip planned for a while. I was too scared to book airline tickets or get excited about going until we knew Alex was well enough to handle the trip. So this week we finally decided it was safe to travel! We are leaving next Wednesday and staying until May 9th.

Other then that life is pretty good around here. Bruce has a few job possibiliti​es and continues to plug away. The Wii Wars have returned and I continue to kick Bruce's butt! Alex has joined in on the fun. He has a few games he will play with us now. Even Theresa (our nurse) gets in on the fun sometimes.

P​lease Pray for continues health, happiness and safe travels.
Ali

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