Blessings and Prayers

 Another week has passed and I am beginning to feel like a broken record. Our days are split between praying for Maddy to feel better and seeing so many incredible blessings around us.  

This week was spring break so Maddy was excited to have a quieter week with no school or ballet. It also meant I had a little extra time to spend with my mom. We are so happy to have them living here, but with the craziness of our lives we don't get to hang out as much as we had envisioned! Saturday my Mom and I went and had lunch and window shopped at a few antique shops in our town. On Monday, Mom tagged along to the mall with me and the kids so I could get Alex some new shoes. It was fun to have a few days just spending time together. 

Tuesday Maddy had her esophagram to see if there is a blockage in her esophagus causing her difficulty swallowing. This test was very hard for her as she had to drink barium (which tastes nasty) while lying down. Drinking laying down isn't easy for anyone, but especially when it already feels like you are unable to swallow and choking. We got through the testing with A LOT of tears and a very patient tech and radiologist. They were not able to stretch the esophagus as much as they had hoped which would have involved drinking large amounts, but with the little bit she drank they didn't see any obvious causes. I did get an email from her GI that he is going to schedule an endoscopy ASAP to try and determine the cause as just this week she was crying again because she can't eat some of her favorite foods. She has lost weight and she is already too low on the charts so we are hoping to get this figured out! After her test we were able to meet a new friend from  horseback riding for lunch. It was so fun to have some time for the girls to play and get to know each other a little better. Then we headed to ride where Maddy had her first completely independent class ever! She even did our "Victory Lap" without being hooked up to a leader!

Maddy leading Gabby to mount

Maddy riding Gabby

Victory Lap totally independent!

Wednesday  Alex had the privilege of spending the morning observing at a Vet Clinic. He loved meeting the animals and learning a little about veterinary science. He is hopeful he can go back again and spend some more time. As for me and Mad, we took Maddy's service dog, Hart to the barn to meet all of her favorite people and then after Physical Therapy went for a swim at Mimi and PopPop's! Speaking of Alex, he has also done a good job this week starting to take over more of his medical care as the first steps towards being able to attend a University!

Thursday was more horseback riding and then another first as she had a sleepover with her two closest friends from riding! Riding was extra fun because one of her teammates was making up a class and needed to ride Gabby, who Maddy usually rides on Thursdays. Blue her other favorite horse had thrown a shoe and was sore so she needed to ride someone different. 5 months ago Maddy had desperately wanted to ride a horse that was new to Victory named Metro. He is HUGE (17 hands) and back then Maddy couldn't get him to move no matter what she tried (she rode him twice)! Over the past few months, Tammi and I have watched Maddy make major strides in her riding both technically, but more importantly in confidence. Tammi chose Metro for her to ride Thursday (and Friday) and she was amazing! She rode him completely independently and was able to trot all over the arena and navigate all of her classmates and volunteers! I was more proud of that ride that almost any other. She had a great time at her sleepover and can't wait to do it again!

Riding Metro

Game Time

Kasey came to visit!

While this has been such a hard time for Maddy medically- struggling with awful migraines and joint pain in addition to the swallowing troubles, I am reminded daily of the many blessings surrounding us. I have to start with Tammi and the entire staff, volunteers, and friends at Victory Therapy Center. Tammi and Maddy have such a special relationship. Maddy wants so badly to prove to Tammi that she is a good rider and she trusts and respects Tammi more than just about anyone. Tammi on the other hand wants so badly for Maddy to truly believe in herself and see how amazing she is. Tammi has the incredible ability to know exactly what Maddy needs on any give day whether it is extra love, an easy lesson, or to be pushed and told she can do something when she doesn't think she can. Tammi prays over Maddy regularly and loves her dearly. The volunteers and Maddy's friends bring her laughter and fun and make Victory her favorite place.  I am so grateful for Victory for providing an escape for Maddy especially during these days when she is really hurting. Having a passion that motivates her to push through her pain and continue living with joy is such an incredible gift. And I can't speak about this without thanking Help Mito Kids for allowing us to provide this therapy for Maddy. Without their generosity and help Maddy wouldn't be able to ride nearly as much and I can't imagine what negative impact that would have on her. 

Please continue to pray for answers and prayers for Maddy, for continued health for Alex and for endurance for me as I try to be the best Mom I can be.

Ali

Quick Update

 This last week has been an absolute whirlwind!

There have been some really high highs and a few lows. 

The absolute highlight of the week was taking Alex on his first college tour! As any long time followers of my blog know, we have been told most of Alex's life that he would not likely live this long. And even a year ago going away to college seemed unattainable. But as Alex has experienced some of the most stable times of his life he started talking about wanting to really get to experience college. My saying his whole life has been "there is no point in working this hard to keep him alive if I don't let him live." I wholeheartedly believe that and now I am prepared to let him truly dream and live. Alex and I are both realistic in the fact that his medical care is extensive, time consuming and at times scary because mistakes can be fatal. So with that in mind we knew we needed a little more time and that we needed to have a school that was close enough to home distance wise. (Plus he can't bear the thought of being far from Maddy) He quickly narrowed down his two top choices to University of North Texas and Texas Christian University. They are very different and both about 30 minutes from home. We have done A LOT of fundraising and speaking events at TCU and he knows he likes that school. UNT has a degree program and lots of research opportunities that really excite him, plus some of his best friends attend or will be attending. We visited UNT and had a campus tour this week and will do the same at TCU in a few weeks. He likely will not attend until Fall 2023 while he works on some independence in his medical care. We soaked in the whole experience, but when we got home I was completely overcome with emotion. I cannot believe that the sick, fragile boy who has spent well over 1000 nights in the hospital is at a place where he can go live at college! What an amazing testament to prayer and the faithfulness of God!

The week has not been as good for Maddy. She is struggling with quite a bit of pain right now. She has had headaches and joint pain daily with her pain level most days being between a seven and nine on a scale of ten. I am often struck by her toughness as she continues to push through even when she feels horrible because she doesn't want to miss out on life. We continue to hope that we can find answers and a solution to help her feel better. The other main issue is that she is struggling to swallow right now and feels like she is choking. We have a swallow study scheduled on Tuesday and hope we can figure out what is going on.  While she struggles medically she continues to amaze us with her progress both at school and horseback riding.  She is doing incredible on her assessments to test her readiness for third grade and is riding completely independently in all of her lessons now. She is currently preparing for an in house horse show where she will compete in a walk/trot independent class (no leader) for the first time. This little girl is tougher than most of us can imagine. Don't be fooled by the smiling pictures you see on Facebook. This girl deals with an incredible amount and does it with strength and grace. I am incredibly proud of her as she continues to prove herself to be an extremely hard worker and the epitome of perseverance. 

I finally have my knee surgery scheduled (April 13) and it can not get here soon enough. I have been dealing with daily knee pain for almost 6 months. I am hopeful for some relief following surgery.

Please pray for Alex as we tackle these next steps, for answers and relief for Maddy and a successful surgery for me. We are so grateful for each one of you who enrich our lives with your friendship and love.

Ali

Update on Appointments

 I wanted to get out a quick update on our trip to Houston! Not too much has been going on otherwise. The usual school and horseback riding. We did have one of our favorite events Dance marathon at TCU. 

It has been two years since we have traveled to Houston for appointments. (We have been having virtual appts every 6 months). It was good to see doctors we have known for so many years and who truly understand this disease like no others, but I forgot how hard and exhausting these trips are. We left home early Monday morning in order to arrive for a 2:00 appointment with Dr. Pacheco our immunologist. Dr. Pacheco is a true God send. She loves my children and truly cares about them beyond their medical issues. She wants to know what they are doing and hear about their hobbies and friends. My kids call her their Puerto Rican Mother and know she would do anything for them. She is a doctor I can call or text day or night and know she will be there. From an immune standpoint the kids are doing well. She is hoping that their immune replacement infusion has some protection for Covid at this point so she is going to check antibodies on them. Other wise things are status quo!

Lunch stop!

Our beloved Dr. Pacheco

Ready to explore the mall!

After leaving the hospital we checked into our hotel in the mall which is the kids favorite place to stay! We headed downstairs to look at some shops and eat some junk food and decompress! We all crashed super early Monday night! Tuesday we had to be out of the hotel by 6:45 to make our first appointment. This appointment was with Dr. Koenig, our Mito specialist. She has been with us for 14 years now since she diagnosed Alex at 3! She is the one who knows the ins and outs of mitochondrial disease and all the havoc it wreaks on these kids bodies! She is thrilled with how well Alex has been doing and doesn't want to change anything. Alex did spend some time speaking with Dr. Ka nd the social worker about transition and becoming more independent in care. Dr. K is concerned with the number and severity of headaches that Maddy is having. She is glad we have a brain MRI scheduled.(It was supposed to be last week and was cancelled due to the ice) In the meantime she is in agreement with everyone else that we need to get more fluids into her. This has been an ongoing struggle because she gets extremely nauseous when she tries to drink more or if I use her tube. We are hoping our GI can help us tackle this. She noted Maddy is still quite weak for her age and wants her to continue all her activities to continue to try and gain more muscle.

Starting the morning in prayer

Dr. Koenig and the kids

Mad praying again!

Lakeesha(Dr. K's nurse for the past 14 yrs) with the kids. 

After finishing with Dr. K we had to kill a little time before our last appointment for Maddy with a rheumatologist to make sure we aren't missing anything related to her joint issues or any other way to help her. Dr. Khamdar is such an incredible doctor and took a lot of time examining Maddy. The good news is that he doesn't feel like their is an autoimmune process going on. The unfortunate news is that despite daily complaints of knee and ankle pain there really isn't anything we can do to help her. But as maddy told me, "My knees and ankles hurt really bad, but I'm not going to cry. I'm just going to keep doing what I like to do". I wish there was more to help, but am so thankful for her bravery and toughness! We finally finished at 2:00 and started the long drive home. 

Twosday!

Maddy and Tori chatting during their cool down lap!

Maddy and her Blue!

"Future Me" day at school!

Thank you for everyone who prayed for safe travel and for us to have good appointments. We are so grateful for each one of you!

Ali