Alex and Maddy

Alex and Maddy

Wednesday, October 31, 2018

Happy 5th Birthday, Madelyn Paige!







 Oh my precious Maddy Moo, my Smoosh, my Firecrack-

 What joy you bring to our family. You are so smart and so funny. You have such big feelings packaged in that little body. Whether you are mad, sad, happy, you own it fully. You love with your whole heart and let everyone around you know. You make friends easily and are kind to all. You tell us we are your favorite and the best always. Your love for your brother is amazing. You are the most determined person I have ever met. You don't know how to quit. You push yourself to do what doesn't seem possible and that perseverance will take you far. When you were a baby and toddler all physical skills were so hard, but with relentless work you achieved every milestone we set before you. In those days when we just hoped you would be able to walk, I never dreamed you would aspire to be a ballerina and go after that goal too. You, my girl, are strong enough to do whatever you want. I hope you always want to be my little cuddle bug, my helper, my best friend. I pray you never lose your sassiness, your spunk, your drive.  You my Smoosh are so special and I love you so much. I thank God every day that he made you "so cute" and that he made you mine!
Love,
Mommy

Year Five Stats:

Weight 39 lbs
Height 3' 7"
Favorite color: Purple and Blue
Favorite Animal: Elephants and horses
Favorite Book: All Better
Favorite Movie: Tangled
Favorite Princess: Rapunzel
Favorite Food: French Fries, Yogurt, Ice Cream with Whipped Cream
Best Friend: Alex, Brookie, Audrey
Favorite things to do: Ballet, Read, Play dolls
What do you want to be when you grow up: Prima Ballerina


Saturday, October 27, 2018

A Happy Week

This has been a great week. We have had lots of fun and not a lot of medical! We started with the "big kids" helping the younger kids in Sunday School on Sunday. Maddy and Alex asked to be together which always warms my heart. Alex has also been working on getting Zoey back into "service dog" mode.


Tuesday Maddy made it back to ballet after missing the last few weeks when she wasn't feeling well. She loves her class and is learning so much.


Wednesday our sweet Erin had baby Greyson. We were ecstatic to go visit on Thursday and meet the little guy we have waited and prayed for for so many months. I am not sure who was more excited to hold him...me, Alex or Maddy. Of course we were also happy to see Erin and Evan and meet their parents.






Thursday we also had Maddy's Fall Festival at school. It was so much fun and maddy loved playing with her friends and having Mommy at school.




Yesterday, Maddy and I went with some friends to Boo at the Zoo. It was a beautiful day and Mad loved having a day with new friends.








It was so nice to have a week full of joy and good times. We are gearing up for one of the busiest weeks of our year. We have Mad's birthday and Halloween as well as Extra Life.

Thank you for everyone who has prayed and continues to pray for us.

Ali

Saturday, October 20, 2018

A Quiet Week with a sad see you later.

This week was very much a quiet week. I am always grateful for the quiet and a break from any drama. We didn't even have a lot of appointments this week! The kids both saw a sleep specialist, but that is all!

We spent much of the week loving on and enjoying our sweet Erin. Erin has been one of Alex's nurses for the past two and a half years. She has been a part of our family. She is one of our best friends, a trusted caregiver and like a sister to me. Alex has never had a nurse that he feels so connected to. He doesn't get frustrated with her. They truly enjoy each other. We spend so much time laughing. When she gets here in the morning, Maddy always says, "Eri's Home" and it is truly the most accurate statement. She is absolutely a part of our home. Thursday was Erin's last day as she leaves to have a son and start her own family. She will be so MISSED. But we know this is not the end of our relationship, just a change in status. Erin, thank you for your friendship, your patience and the love you have showered on my children. You will always be one of my heart sisters.



Please pray for Erin as we welcome Greyson to the world on Wednesday. Pray for Alex and his anxiety during this time of transition and for the kids to stay healthy for the next few weeks as we have lots of fun activities coming up to celebrate Mad turning 5 and Halloween.

Ali

Alex is just over half way to his goal of $5000. We have two weeks for him to continue climbing closer. If you would like to donate or share his link: Alex's Fundraiser

Saturday, October 13, 2018

Houston

For so many years Houston and Children's Memorial Hermann Hospital  was home for Alex and I. Over the past few years the trips have become fewer and there are always mixed feelings as the trips approach. We dread the drive, we dread the exhaustion of so many appointments in a few days and we dread the length of the days. BUT the knowledge of mitochondrial disease, the amazing ideas and research and especially the love of doctors who have shared some of our lowest lows and some of our highest highs.  It is because of these doctors and the care they take of my children that we continue to trek the 5 hours several times a year.

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.

Maddy and her Mimi
We spent most of Saturday packing up and preparing for our trip. Maddy was not sounding good and it was clear she was sick with another upper respiratory infection. Sunday we headed to Houston to get settled in for the week. Maddy continued to worsen. I reached out to our immunologist to let her know mad was sick again and see if she could see her earlier then Tuesday afternoon (our scheduled appointment with her). We communicated back and forth while she formulated a plan. 

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!
This is what long days of appointments do to my kiddos!

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!



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

Friday, October 5, 2018

My Upcoming Surgery

I have had several people contact me to ask about my appointment with the surgeon.

I saw him on Tuesday. If the skin cancer has not spread the surgery should be pretty simple. They will remove a thin layer of skin and prepare slides to examine while I wait. If the borders are clear, I will be done. They will continue this process until they have removed all of the tumor (in the doctor's words).  The tricky part comes into play because of the location. the spot they removed is right up against my nose. if the skin cancer has spread into tissue on my nose the removal and repair could be a little more extensive. We will not know until they start. i am scheduled for November 6th.

In the meantime, the kids and I are so excited because Mimi flies in tomorrow! She is coming to help us with our appointments in Houston this coming week as well as attend some of her own. The kids have quite a few appointments crammed in 3 days. We are hoping to enjoy some quality time with Mimi while accomplishing a lot!

Please pray for some answers and relief for my babies from these doctors who understand their disease better then anyone. Pray for patience for us all as we spend hours in appointments and try to keep 1 little red head entertained. Pray for peace for me as I prepare for my surgery.

Ali

PS- If you would like to support Alex here is the link:
https://www.extra-life.org/participant/AL3X684

Also, Mad is having a fundraiser for her school. if you would like to support her:
https://charlestonwrapstore.com/studentaffiliate.php?code=940140