Alex and Maddy

Alex and Maddy

Tuesday, January 12, 2016

Gratitude







Our Pastor has decided to take this year and figure out how we can be more grateful people. I love this topic and this sermon series that he has chosen.

As some of you know we have had a really rough few months in many ways. Just when I was starting to feel really emotionally drained, we received one last blow as we learned that Maddy is not making sucrose and glucoamylase, two of the digestive enzymes necessary for processing sugars and starches. We have had to cut out all sugars (including many fruits) and all starches (including many vegetables). Maddy can't have grains, potatoes, sweet potatoes, pretzels, crackers, waffles, etc. Pretty much all carbs are out. Considering this is pretty much all she was eating it has been rough on all of us. But as we struggle with this new diagnosis. I CHOOSE to focus on all the blessings in my life that I am grateful for.

First and foremost, I am so GRATEFUL every single day that God chose me to be Mom to my two incredible children. I have a shining example everyday of living life with joy, with strength, with courage. Watching the reality of my children's life reminds me that even when life is not fair when can choose to be happy and make a positive impact on others. I could not be more proud of my smart, funny, brave children and am so glad I get to walk through life with this constant reminder of what true strength looks like.

I am so GRATEFUL for our friends and family who have supported us in every way imaginable. Who are there to share every laugh and every tear. Who are willing to let me vent when I need to and encourage me. Family and friends who love my precious babies exactly as they are.

I am GRATEFUL for our church and church family who are a constant source of strength. To our incredible Pastors, Chris and Molly who challenge us weekly to change, to strive to be the people God created us to be. Who are willing to admit their own flaws as they walk this journey with us.

I am GRATEFUL for all the incredible experiences we have been a part of as a result of a life that is not always easy. Alex and I have had some incredible opportunities over the past year(s) simply because despite his challenges his amazing spirit and perseverance touch others. We have been able to use his gifts to help some of our favorite organizations fundraise and help others who are struggling.

I am GRATEFUL for the angels who have blessed us over the past few months and shown us that there are good people who will help lift you when you need it. That are a reminder that we do not walk alone.

I am GRATEFUL for the HOPE of an incredible 2016!
Ali

Saturday, October 31, 2015

Happy Birthday Madelyn Paige!







Two years old...How has it already been two years since my sweet Maddy was born.  From the time I was little I dreamed of being a mother and those dreams always included a daughter. When I had Alex I instantly fell in love with my mama's boy, but I always knew I wanted more children. Because of our journey with Alex, I wasn't always sure that we would get the gift of more children. We waited 9 long years to try again and what a gift it was on Halloween of 2013 when our Madelyn came into this world. It is all too perfect that Maddy is a Halloween baby because it fits her personality perfectly. She is both Trick and Treat. She is the sassiest, most strong-willed little girl, but also the sweetest, most loving. One minute she is standing with her arms crossed defiantly and the next she is putting herself in time-out for the 5th time in a row so she can get one more hug after she says she is sorry. She is quick to tell me no, but just as quick to say "I wuv you". She is all girl. She loves to play with her baby dolls and cook in the kitchen. She loves all animals. She loves to read. She loves her music and cooking classes. She LOVES her brother and her dog. She loves life! She is so very funny. She makes us laugh all the time. She has been known to thrown something when she is mad and then oh so sweetly say, "ooops..sorry....what happened?". When I ask what she wants to eat her first response is always "Hmmm...let's see." She has brought so much joy into our house.

My precious Madelyn-

I love every ounce of your being. You have so much personality and so much love in that tiny little body. You are so determined to find your way and explore and learn. You are so eager to show your love with a hug or a cuddle or saying "I wuv you". You are so incredibly smart. You already know your colors and shapes and are always counting to three. Your personality and sweet voice are infectious. We can't help but smile and laugh when you are around. Mia follows you wherever you go. You and Alex are the best of friends. Thank you for making me smile everyday. Thank you for completing our family. Thank you for giving your Buggy the sibling he always wanted. But most of all thank you for being the precious incredible little princess you are. I love you.
Mommy

Thursday, October 29, 2015

Not the greatest of months

I am usually excited to blog about the fun we have had during the past month. Unfortunately this month didn't have a whole lot of fun, cool activities. Instead it was filled with a lot of medical appointments and hospital visits. What this month did give me is a reminder of how scary mito can be and an appreciation for our new norm which involves a lot less hospital time then it used to!

We started the month with a trip to Houston to check in with our specialists down there. It wasn't the easiest trip for Alex as he had several tests that are less then fun! On Monday, we started the morning with pulmonary. He was happy with how Alex is doing. Then both kids saw Cardiology. He also was happy with Alex and wanted to keep everything the same. He did confirm that Maddy has a hole in her heart, but wants to watch her and not repair it until she is a little bigger. Monday night Alex had a sleep study. He hates having all of that "stuff" hooked up to him, but he handled it better then ever before.

Tuesday we saw Dr. Koenig. She didn't want to change anything with Alex, but did let us know we need to do an MRI of his spine again as it has been two years. She was really happy with the progress that Maddy has made in physical therapy, but still does not like the way she sits, the positioning of her feet or her gait when she walks. She wants us to continue therapy three days a week. She also re-ran some labs that were off the last time we saw her. Once our appts were done Alex had to have cardiopulmonary testing done. It was really hard and took almost 3 hours to complete.

Wednesday we finished up with Dr. Pacheco. She is still watching Maddy closely as she feels like she has an immune deficiency that just isn't clear yet. She always likes to keep a close eye on our boy! After a TON of labs, we headed home.

We arrived home around dinnertime on the 7th and overnight Alex called me because he was extremely nauseous. He took his temp and it was fine so I gave him meds and went back to sleep. When I woke up at 6:00, he was crying that the meds didn't work and he was so nauseous. I went in his room and he had 103.9 temp. I quickly scrambled to pack a bag and head to the ER. Before we even got out the door his temp had climbed to 104.3. He was okay on the way down, but took a turn for the worse shortly after we arrived in the ER. His blood pressure that was fine on entry starting dropping rapidly and he lost perfusion (blood flow) to his extremities. His hands were as white as the sheets and ice cold. I know from past experience that this is not a good thing! The ER doc stayed in our room for almost an hour giving continuous orders. he was given a HUGE amount of fluids and a HUGE dose of hydrocortisone and finally started to stabilize. he was admitted to the PICU in assumed septic shock. However cultures never grew anything and he stayed stable! We were in the hospital for four days and the final decision was that he went into shock caused by adrenal crisis because of either a virus or his flu shot. It was the first time in a while that Alex scared us and was a reminder of how quickly things can turn.

We had a quiet week and a half recovering and then we were back to the hospital for surgery! Alex needed to have his port changed and a mole removed. Alex's current port was placed in January of 2011 after he was in septic shock in December of 2010. We were told that we couldn't leave a port in place longer then 5 years because it starts to adhere to everything and becomes difficult to remove. We feel incredibly lucky (and have worked extremely hard) to still have a port almost 5 years later without infection! So this was a planned surgery. The surgery went as planned. Alex has two incisions on his chest. One that is pretty small and one that is almost 2 inches long. He also has a long incision on his jaw line (maybe an inch and a half?). He proved once again how tough he is as he made it through recovery without ever taking a dose of pain meds.

We are happy it is almost November and hoping this month will bring back fun times and less doctors visits! I am continually reminded of how strong and determined my two precious children are and how very grateful I am I get to be there mom!

Ali