Alex's Adventures: May 2021

Monday, May 31, 2021

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

Sunday, May 16, 2021

A Crazy Few Weeks

The last few weeks have been busy and crazy and I find myself wondering where the days and weeks go! We have had a mix of medical and fun, good and bad, and lots of busy!

Let me start with the not so fun house update...At the end of April we had a pretty nasty severe storm with large hail. As with most homes in our area we are working through the insurance process as we need a new roof and gutters. We are so fortunate compared to many, but house repairs are never fun (or cheap)!

Several have asked for an update on Bruce. He finished his last round of Chemo in late March. We just completed the endoscopic ultrasound of his pancreas to assess several "spots" that were seen on a scan. We received good news from that procedure as the spots were so small they could not even be aspirated to biopsy. The plan is to do an MRI of the Pancreas every 6 months and follow-up if needed. Bruce has his other 6 month scans coming up in June and his first colonoscopy since his diagnosis in July. Please pray for good results from these scans. Assuming all looks good/stable he should be done with visits and scans until December.

I have had some dental/oral surgery issues my whole life (Don't even ask me the amount of oral surgery I had as a child). The last two visits to my dentist they let me know that I needed to see a specialist to address some concerns and avoid more issues down the line. I will be having oral surgery/procedure in June. I was not planning on this and obviously dreading it, but I am glad I am going to get it over with and hopefully be done for a while!

Alex is...Alex. I'm not sure. He is having some good days and he is having lots of days where his stomach pain and nausea limit his ability to do the things he wants to do. I wish things were easier for him, but I often here raucous laughter coming out of his room as he plays video games with friends. He loves big. He loves to watch tv shows with me and play with his sister and visit with Mimi and PopPop. He is really enjoying school and actually asked to take a class and possibly two over the summer. He auditioned for Summer Theater Workshop this week and is excited to work on a show again.

Maddy Moo had some testing this week as we try to get to the bottom of some symptoms that we cannot figure out. Every time Maddy exercises she is nauseous and fatigued after and getting extremely pale. This includes three times a week of Horseback riding. We are trying to figure out what is going in so we can attempt to help her feel better. No One should have to feel sick from doing their favorite thing in the world. She also continues to have daily knee and ankle pain. In other news, Maddy had her visitation day at her new school and LOVED it. She had a great morning and the report from her teacher was that she did amazing. We are about to finish up first grade and Maddy is so ready for the summer especially August. She was already looking forward to school and our big trip, but this week she was asked to participate in the National Snaffle Bit Association World Show! She is excited (and a little nervous) to experience her first big horse show! We will have a few fundraisers over the summer to help offset the cost of the show and travel and so Maddy has to "work" to earn some of the cost. More to come...