Alex and Maddy

Alex and Maddy

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.

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!


Sunday, August 16, 2015

Crazy, Busy Life

2 months...the days, weeks and months are just flying by! So often I sit down thinking I need to update our blog and then life starts happening around me!

We have had a good summer. I'll start with Alex. Alex amazed all of us this summer by participating in his first sleep away camp. He spent a week roughing it with his friends at Boy Scout Camp. It truly took a team effort to keep Alex safe and healthy, but there are no words to express how proud I am of my amazing boy. Boy Scout camp is hard for all the kids, but the amount of strength and fortitude it took for Alex to push himself through the week is remarkable. His efforts did not go unnoticed. The two times I went to camp to take care of some medical needs, I was stopped by several people saying they had watched Alex and how amazing he was. The nurse running the health center even commented that instead of Alex coming for care he would bring others because he knew where it was! I am constantly reminded about the strength God packed into his little body. He is an example everyday of pushing ourselves to be the best we can be. Alex was able to make his first rank advancement in Scouts. He also continues to work hard in TKD. He has done a week of Mission camp with our church group and a week of arts camp at our hospital. Medically he continues to do well. We are getting ready to do growth hormone stimulation testing as he is finally stable enough to try and help his growth. We started school in mid July and have already completed 5 weeks of 6th grade. He continues to thrive academically and especially loves Science.

My little Maddy... If I had to choose three words to describe my Maddy they would be sweet, determined and strong-willed. That little 20 pound peanut has more determination in her then most adults. She is such a hard worker. Nothing physically has come easy to her, but she works SO hard to try and move her little body. She is in therapy 3 days a week and amazes us with her work ethic. She will be exhausted and shaking, but still try and take a few more steps. She is getting so close to walking. Our hope is that she can take some independent steps by her birthday. She is still getting her neupogen shots to boost her blood counts twice a week and they have helped immeasurably. She doesn't gain weight very easily, but she loves to eat! She is the sweetest little girl who loves all animals, music, babies and especially her family. She is talking up a storm and always asking for hugs. She says please and thank you and sorry. Her brother is her favorite playmate besides maybe Mia. Maddy and Mia are inseparable.

We are gearing up for a busy fall. Maddy and  are leaving tomorrow for Houston to do some specialized testing to see if we can determine if her issues are muscle or nerve related. Then we are taking our annual trip to Mimi and PopPop's. Alex and  look forward to our time at the beach all year. We start our homeschool co-op as soon as we return. Then Alex has a special event in September  as he was nominated for a fundraising event called Night of Superstars. We also, have a few Make-a-wish events and two trips to the National Institute of Health for both kids to participate in a study on Mitochondrial Disease and immune function. I have also been asked to serve on the family advisory council at our children's hospital and am working about 25 hours a week for Taste Buds Kitchen as well as dancing in the Dance Ministy at church. I am also siting on the panel of a new Special Needs Ministry at our church!

Whoo! Now you know why I haven't had time to update our blog.
Thank you to all who pray for us on this crazy journey!

PS- I promise pictures soon!