So Very Proud

 Oh my sweet Maddy Moo, what a long way you have come...

These pictures are separated by 5 years. I so vividly remember at 14 months crawling on the floor behind her to move her legs because she didn't have the strength or coordination to move them her self. I remember the day at 18 months when she first was able to bear weight on her legs and we all cheered at therapy. I remember ALL the therapy sometimes as much as 4 days a week. I remember the appointments with the orthotist to fit you for braces. I remember all your therapists, who became friends as we worked so hard to help you gain movement and independence. And so I watched with tears streaming down my face on Saturday as this little girl conquered so many boundaries set before her. Maddy is naturally shy and does not like to be the center of attention. She has struggled to get in front of her class at school and won't even do activities on zoom because she feels like everyone is watching her. And yet on Saturday she got up before a room of people with tears running down her face and faced her biggest fear and danced beautifully. I had seen her do her dance better, but the courage and heart she showed meant everything! Proud does not even begin to explain my feelings. I had told her ballet instructor and her Therapeutic Riding Coach that my biggest goal for her is to gain confidence and this was a huge step forward. Maddy has loved ballet since she was little and I am so grateful to Joli for offering private lessons so Maddy had a way to continue in a safe environment. 

Maddy is also taking art with her ballet teacher and she had some beautiful artwork displayed as well.

 

Let's see what else...

Alex is doing well. He seems fine since we got home from the hospital. Our prayer is that the infection has completely cleared from his line and will not come back. Alex has an orthodontist appointment on Friday to begin his treatment with Invisalign. He is nervous, but excited to start.

We got some more not great news on Bruce. His latest scans show cysts on his pancreas. They are not sure at this point how concerning they have referred him to a pancreatic Cancer specialist who he will see next week. He also has repeats of all scans tomorrow. 

Please continue to pray for Bruce and Alex. Pray for their overall health. Pray for me as I try to stay positive and keep everyone healthy and happy. Pray for me to keep my head above water as I keep the house going and the bills paid.  Pray for everyone to stay healthy so we can enjoy Christmas as a family! Thank you for loving us.

Ali

Home, Sweet Home

 There is no place like home!

Alex was discharged from the hospital on Wednesday afternoon. This hospital stay was like no other. Alex felt totally fine for all but the first day and yet we couldn't get his infection to clear and there is no option to come home with positive blood cultures. Alex and I tried to soak up the time together. We visited with doctors, nurses and staff who have become friends over the years. We watched shows together. We talked. We laughed. But despite all of the positive, hospital life is hard. It is down to the bone exhausting. It is needing to be constantly "on", to answer the same questions, to have hard conversations, to be woken countless times each night and to worry about the strain on the whole family: physically, emotionally, financially. And so we are so happy to be home. But with being home means even more exhausting days. I have not had any nursing help since the first week of August. The kids medical needs are busy and demanding all of time, but adding two IV meds to the routine that have to be given at very specific times with no wiggle room means I am up late and up even earlier. But at least I get to sleep in a comfy bed! And I am not sure who is happier we are home, Maddy or Zoey! This is what it looks like when you are in the hospital, but feel pretty good:

As most of you know, Maddy has a left knee that will require surgery because it dislocates every time she straightens her knee. The surgery is a very invasive, open surgery (not laparoscopic) and the best outcomes would be to hold off until after she is ten or she may need additional surgeries. For the most part her knee doesn't hurt and we have been told ballet and horseback riding are two of the best things she can be doing. While at her private ballet lesson on Thursday she dislocated it a little more "forcefully" than normal and she had pain Thursday and Friday. Luckily, with rest, ice and advil she is back to normal. 

Friday we were able to go pick out a Christmas tree that we decorated yesterday. 

A Mom who is happy to be lying on the Couch!

We continue to LOVE having Mimi and PopPop so close by. They were a huge help when we were in the hospital as Mimi spent 2 days with Maddy loving on her and distracting her so she wouldn't miss us so much. After 16 years of having no family in Texas, we are making the most of sharing family traditions during this Holiday Season. Now if covid would just go away so we could go explore and have fun!

Bruce has finished his third round of Chemo and starts his fourth round (of eight) this week. He continues to do pretty well with fatigue being his biggest issue. We are so grateful for a job working from home that makes working while in treatment possible. 

I continue to be SO busy between homeschooling, handling the kids daily medical needs, appointments, horse back riding, ballet, volunteer work, cooking, cleaning, paying bills and keeping Mimi and PopPop from getting lost. I know this is just a season and I am so blessed that I get to share every minute of life with the ones I love most.

Please continue to Pray for health for our family, specifically for Alex to clear his infection completely and for Maddy's knee to not get worse. 

Ali