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

Where do the weeks go?

 I am not sure how the weeks fly by so quickly! I am pretty sure they get caught up in the whirlwind of doctors appointments, therapy, school and horseback riding! I think I will update person by person as it may be easier than trying to piece together what we have done! 

Alex continues to do really well. He loves his forensics classes and is also doing well in psychology and business math. We are in the process of scheduling appointments with two local colleges to tour and ask some questions. He had an eye doctor appointment and had a slight change in his prescription so we need to go pick out some new glasses and also had a pulmonology appointment where everything remains status quo. What an incredible blessing it has been for us to have Alex feeling so well and be medically stable.

My Maddy Moo has been keeping me on my toes. Her schedule is crazy and we continue to work through some medical issues with her. Shortly after my last update we picked up her new hearing aids. She has done phenomenal with them. She is able to put them in and take them out and has not once complained. She is hearing well and acting as if she has had them forever. We had our one week follow-up and the audiologist is very happy with how she is doing. Our next follow-up is not until July. We did labs and they show that Maddy is still not getting enough fluids. Unfortunately this has been a lot harder to accomplish than we had hoped. She does not feel thirsty and any time we try and "push fluids" whether orally or through her tube she feels extremely nauseous. I am unsure of what the solution is at this point. Our other issue is headaches. She has been struggling with headaches for quite some time. After seeing the neurologist she had asked us to try a few things before prescribing a medication. However, this past week she had a migraine that lasted 4 days and we could not break. The neurologist was awesome at prescribing something to break it and we have now started on a daily preventative in hopes of having less headaches. (She was averaging about 4 a week!) With all the struggles she has had medically, I remain so very grateful for her therapeutic riding and hippo therapy which allows her to spend multiple days at the barn. No matter how hard her day has been or how bad she feels she comes alive when she is on the back of one of her horses. The staff, the volunteers, the horses and her friends provide the love and fun that keep her pushing through. I am also so very glad that we made the decision to send Maddy to Trinity Prep. Each week I reminded that it is the perfect setting for her. From the schedule to the small class sizes to the faith based learning to the kindness of her teacher and classmates. It is absolutely perfect for her and she is so happy to be a Trinity Prep Knight!

Bruce finally saw his urologist and got the results on his Kidney MRI. Luckily the spot on his kidney is stable and there is no need for further treatment at this time. He sees his Oncologist again in May. 

I am hanging in there, but it has been a rough start to the year for me. It has been a hard adjustment to not be able to workout. My knee continues to bother me. I have had multiple appointments and meet back with the orthopedic surgeon next week. We will be scheduling surgery. In the meantime, I am just trying to keep my head above water between the kids schooling, extra curriculars, appointments and financial stress.

Overall, we are so grateful for you, our village who keep us smiling and remembering that we are loved. 

We ask for prayers for Alex's continued health, for Maddy' new med to work and for us to figure out a way to get more fluids in, for Bruce to stay healthy and for my knee and peace over financial stress so I can rest!

Ali

Snow Day in Texas

 There isn't too much for me to update... We had bad weather start Wednesday evening and we were not able to leave the house until yesterday! Maddy LOVED getting out in the 2 inches of ice/snow we had! She has now experienced snow the last two years after never having seen it for the first 6 years of her life! We are definitely not cold weather people as we only lasted about 10 minutes at a time, but long enough to have fun. We are glad it is gone and we are back to our Texas weather this week with temps expected in the 60's and 70's!

I had an appointment with a rheumatologist this week who has concerns about my other knee and hips. I also had a physical therapy evaluation with a special physical therapist at the orthopedic surgeons office. He was excellent and luckily did not aggravate my knee any worse than its typical unhappiness. I have follow-ups with both doctors this month to figure out next plans.

Maddy has her hearing aid fitting on Wednesday. We are all hopeful this is going to be a turning point for her because she is really struggling with confidence right now. She only got to ride on Tuesday this past week. She can't wait to get back to the barn this week! Last night she got to have a sleepover at Mimi and PopPop's which she was so excited about. She loves having them so close and getting her time with them!

Alex continues to do well which is so good to see!

I have two main prayer requests. One is for Maddy to believe in herself and see how amazing she is. The second is for peace for me. Finances are what cause me the highest level of stress and our medical bills in January have been astronomical between Maddy, Bruce's testing, and my appointments and testing. As always I also ask that you pray for Alex's continued good health.

Thank you,

Ali