Saturday we were SO excited to pick Mimi up at the airport! We love Texas and living here,but being away from family never gets easier. And so each visit is a celebration... even if it is for appointments.
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| Maddy and her Mimi |
Monday morning Alex saw our pulmonologist. He is an amazing doctor who is extremely interested in how Mito affects the pulmonary system and is always researching and thinking outside the box. I love to hear his ideas each visit and the new ways he hopes to help Alex. He encouraged us to give Alex another try at bipap with our trilogy ventilator in hopes of improving his energy level which is really bad right now. Other then that we need to repeat a sleep study and we will report back to him in a few weeks. When he realized Maddy was sick, he was quick to step up to the plate and add her to his busy schedule. Her lungs didn't sound great. She was wheezing. He gave her a breathing treatment and ordered a nebulizer and albuterol. This kind of care and concern makes these trips worth it. After dropping Mom and Alex off at the hotel to rest, Maddy and I headed for an appointment with a physical medicine and rehabilitation specialist. This is a new doctor for us. Over the past year and a half while Maddy has done extremely well she complains almost daily of leg pain. It keeps her from wanting to walk and stops her from participating in activities. Our hope was that this doctor would have some ideas to help with this pain. After asking me A LOT of questions and speaking to/examining Maddy she had a few ideas. Maddy has always had significant hypotonia. because of this her joints don't have the stabilization they should. She feels like the hypotonia and mito are the cause of the pain. In Maddy's case she doesn't like to slow down so she pushes herself to the point of hurting. She said until she reaches a maturity level of listening to her body it will most likely continue, but she had some ideas to try and support her. One, is to order a wheelchair for her so she can ride when travelling longer distances and save her energy for the fun things she wants to do. The second is to try lidocaine patches to help the pain when she has done too much. We will follow up in a year or sooner if we have any questions.
Tuesday was our longest day of appointments. We were so happy to run into dear friends first thing in the morning in the waiting room! It is so fun to see friends and catch up on these trips. Our first appt was with Dr. K. She has been our mito specialist for over 10 years. In the early years she was the captain of the ship and the one we relied on for most decisions. While we have delegated most care to all of our specialists and their areas of expertise she is still the one who knows this disease inside and out. It is her opinion and her guidance I return to over and over to guide me in our level of concern and help make decisions in care. She has watched my children grow and change, stabilize and worsen. She knows the devastation this disease can cause and is someone we trust completely. For Alex, she asked us to give him time. She hates that he is feeling so bad energy wise right now, but feels strongly that all of his illnesses and surgeries over the past two years and the main culprit. As much as she hates to not give him something to help she feels strongly that we need to keep him healthy for 6 months and we will see an improvement. She always (and has always) included Alex in all treatment decisions and allowed him a voice in his care. he agreed to give it the time and see. For Maddy she is doing so well right now other then the leg pain and frequent illnesses. She trusts that her coworkers will help us in those areas so other then running labs no changes there. Alex was sad we forgot to get pictures this time!Hopefully, next visit!
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| This is what long days of appointments do to my kiddos! |
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| I say it all the time, but BEST big brother ever. |
After a short break, we had appointments with Dr. P, our immunologist. If Dr. K is the brains of the operation, Dr. P is the heart (although she is brilliant as well). She is one of the warmest, most loving people you will ever meet. We start and end appointments with hugs. She loves my children completely. She is as interested in hearing about their activities as their immune systems. She has been integral in keeping Alex alive over the past 14 years. We are so grateful for the woman and the doctor she is. For Alex we know the goal is to keep from getting sick to see if we can make him "feel" better. She talked about precautions with the upcoming flu season. She is checking labs to decide about increasing his immune replacement infusion. She is desperately fighting to get Maddy's immune replacement covered through insurance once again. We have been without for about a month and she has already been sick twice. We need to help her system so she can continue to enjoy school and ballet and all of her friends!
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| When Maddy was scared about her flu shot, Dr. P held her and sang to her. |
We also saw, Dr. K, a rheumatologist while we were there on Tuesday. This appointment was for Maddy and once again we were trying to work on the joint pain. Dr. K does not feel like it is arthritis, but wanted us to do a trial of motrin every morning for 2 -3 weeks and see if we noticed less complaints. He also ordered some labs based on the history of autoimmune disease in my family. Did I mention this was a long day! We left the hotel at 7:00 am and got back at 4:30!!!
Wednesday meant one last appointment before we could head home! As many of you know, Alex, me and my mom all have had holes closed in our hearts in the past 6 years. Cardiology has been closely watching Maddy as she also had a hole. Because it was not causing major issues they did not want to close it until she was at least 5 because of her size. We were so happy on Wednesday when our cardiologist let us know that he did not see the hole this time! We will continue to follow yearly, but we are so happy to not have to do surgery right now! Alex also got a good report at this appt! After our appointment we got on the road and arrived home around dinner time.
Once appointments were over we had a few days to enjoy some time with our Mimi! Thursday Mad had school. After dropping her off we headed down to Cook Children's to visit some of our favorite people with Mimi. Alex got to play violin with Sonny so Mimi could hear him play and we met up with Karol our Children's Miracle Network representative who has become a dear friend over the past few years. We even got to say hi to the president and CEO on our way out.
Yesterday the girls went to paint pottery while Alex had some down time to recoup. It was a fun last day.
Maddy continues to struggle with a pretty bad cough and is requiring brething treatments several times a day.
Everyone knows that my mom and I have a special relationship and it is even more so with the kids. I love watching the love between them. I am so thankful that my mom came to help me through this grueling week and spend some quality time with us. Each goodbye is wrought with tears and anxious anticipation of when we can see each other again. We are hopeful our next get together is full of fun and creating memories and both kids feeling good!
Please continue to pray for me and my upcoming surgery, Maddy to stay well and her medication to be approved, Alex to stay healthy and for him to tolerate the bipap which he hates.
Ali
Alex desperately wants to meet his goal and help others. Please share his page and donate if you are able!
https://www.extra-life.org/participant/AL3X684
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