Alex and Maddy

Alex and Maddy

Sunday, February 23, 2014

Another Month!

Where does the time go? I really am trying to keep the blog updated, but my days seem to fly by and then I crash into bed exhausted at night!

Things have been going really well. We have been so busy, but for the most part it is GOOD busy!

Okay let me back track...
At the end of January we had the the pinewood derby with cub scouts. Alex originally did not want to participate, but with 4 days left he decided he really wanted to do it. So Bruce and Alex hurried to get a car ready. Not only did Bug win Best in show for the webelos (his rank), but he had his fastest car yet. His entire den did great and his best friend, Walker won the overall speed Champion! ore then anything Alex was happy to have a day to spend playing with his friends.


I know I say this often, but we are so blessed to be part of this incredible group of boys and their parents. hey are such a nice group of boys. hey are kind, respectful and really enjoy each other.

The first week of February, Gramma and Grampa (Bruce's parents) came to visit. We had a really fun time. We went to the aquarium, Legoland, shopping and had lots of good times playing at home. It was so nice for them to get to meet Maddy and have some time with Buggy. Pics to come!!!

Since September we have been part of a homeschool co-op that meets the first, third and fifth Friday of every month. because  was on bedrest for most of the fall, I really didn't get to meet anyone. This semester we have become friendly with several families and it has been so awesome to have some new friends. We went on a field trip to the Perot Science museum, have had multiple playdates joined a science experiment class and been to the park. It is so nice for me to have some girls who can share the joys and struggles of homeschooling and Alex is thrilled to have made some really good friends. Now if we can just figure out how to fit everything in our days! Speaking of co-op, I have also been approached by several of Alex's teachers telling me how much they enjoy having him in class and what a leader he is. It makes me proud that he is able to go into a classroom and show his incredible spirit in a way that touches people.



A few weeks ago we were approached by child life at Cook Children's Hospital about having Alex's picture on a wall in the hospital. I agreed and Alex was thrilled! He was interviewed in late January and had his pictures taken this past week. I saw a few on the photographer's camera and they looked awesome.  can't wait to share them once we have them.

I have signed Maddy up for Kindermusik. It is a music class that is fun and helps foster development. Alex and I did it when he was a baby for several years. Maddy had her first class on Wednesday an LOVED it! his semester is called sign and sing. They are learning sign language. Ms. Kat has had babies as young as 5 months old start to sign back. Maddy is fascinated when  sign to her and just grins and grins. She is really starting to have such a cute personality. She is smiling all the time and has really found her voice. She is definitely a mama's girl. She is VERY attached to me. She loves her brother and looks for him as soon as she hears his voice. She loves to be in the playroom when he is playing so she can watch him.






On Friday, Alex once again belt tested in taekwondo. He continues to thrive I his classes and absolutely loves it. They did not find out the results yet, but I have no doubt Alex passed as he did an incredible job!


I am so proud of my boy as I see him work so hard to overcome the effects of his mitochondrial disease and accomplish his goals.

Medically, everyone is holding their own. Alex has not gained any weight in a year and is struggling with fatigue again. He is back to taking a 4-5 hour nap almost every afternoon. We are tinkering with his TPN in hopes of getting him feeling better again. He is also being started on iron and is very close to needing a blood transfusion again.  Maddy is almost 4 months, weighs 11 lb 14 oz. She is doing pretty well. She is still struggling with reflux, but is doing well overall.

Thanks for checking in!
Ali

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