Medical and Fun Update

 I still can't quite figure out how 2 weeks can fly by so quickly! It has been a busy few weeks as we finished up some activities and school as well as had some doctor's appointments. 

I will start with the medical update first...Maddy continues to have significant pain in her joints on a daily basis. It is primarily in her knees and ankles although she has recently also started to say her wrist hurts. We went back to our Physical medicine doctor for the second time in 2 months to try and figure out if there is anything else we can do to help her. Basically there isn't much. We are going to do new orthotics and he wants her to try electrical stimulation to try and strengthen one very specific muscle to try and stabilize her knees. He doesn't have a lot of hope it will help, but wants to be able to say we have tried everything. Alex also saw the physical medicine doctor to be referred for a new wheelchair. He also ordered orthotics and a referral to physical therapy for some pretty intense stretching as Alex's hamstrings as so tight he cannot straighten his legs or stand up straight. We also saw GI. That appointment was pretty easy as every thing is pretty much status quo there. Alex continues to deal with nausea and pain, but not much more we can do to help. Maddy still struggles with constipation, but we are pretty maxed out on meds. 

Before I get into the rest of our fun, I realize that many people who read my blog started following when Alex's health declined and may not know our early history. So bare with me a minute...I was six months pregnant with Alex when we moved to Texas. Being insanely social, I knew I needed to find some support as I navigated motherhood for the first time in a new place with no friends and family. I joined Mom's Club before Alex was even born and became part of a playgroup. We had our first meeting when Alex was one month old. Four of us stayed together as a group and raised our little ones together. Other's came and went in the early years, but the four of us were a constant. Our playgroup taught Alex and I what true friendship looks like. They loved us through the hardest of times, they changed plans, they drove to Houston to visit in the hospital. They were our safe place. The one place we could be ourselves, not answer questions, not explain, just be. Although we don't get together every week anymore, they will always hold a very special place in our heart. And so it was so fun and a little crazy to get to attend Brooke's graduation party this week. That very first playgroup in July of 2004, Brooke was the oldest at 1 yo and Alex was the youngest at 1 month old.  (My early pictures are not digital because we are old!)

Our Second Halloween together Oct 2005

Brooke's Graduation

My Ms. Moo had her recital this past weekend and I could not be prouder of her. Her bravery and the confidence she displayed were amazing. It is never easy for her to be "on display", but she got on stage and danced her solo beautifully. 

Ms Joli has been such a blessing to Maddy and has reignited her love of ballet (and art).

Maddy was so glad to have Annie with her!

Maddy also finished first grade this week and her PT took her and her riding partner to see Dream Horse!

Finally, I want to share a podcast with you. When Alex and I first started speaking/fundraising for Children's Miracle Network and Cook Children's Hospital, one of the first times Alex spoke was to a group of gamers at an Extra Life Meeting. Since that first night, Extra Life has been Alex's favorite way to give back it combines two things he is passionate about. He has always been especially close to two of the guys from that group. JR has started a podcast and asked to interview Alex about Extra Life. The entire podcast is excellent and is about 2 hours long. Alex starts at 57:30, but spends some time talking games. He starts speaking about Extra Life at 1:21. If you ever wanted to hear what it means to Alex to give back take some time and listen to it here. Thank you to JR and all the Extra Life crew for giving Alex his place.

Thank you to everyone who continues to walk this journey with us and show my children so much love. I am so grateful to each one of you.

Ali