Travel X2

This has been the craziest couple weeks.

The kids are on the mend. Thank Goodness! Maddy has recovered from her sinus and ear infection and was back at school this week. She was so happy to be back after missing two weeks. She is still having some leg pain, but we are hoping our Mito specialist can figure that out when we see her. In the meantime,  we are just trying to help her however we can. Alex's stomach pain is stable. i don't know that I would say it is better, but he is tolerating it and trying to join the land of the living. We have seen both our endocrinologist and GI over the past two weeks trying to get him to a better place. Our major concern is with Endocrine. Alex's body does not make cortisol. He receives hydrocortisone everyday and gets more when his body is "stressed" in any way. Not enough cortisol sends him into a crisis and shock. He has been in shock in the ER multiple times in crisis. It is one of the scariest things we deal with because it could be fatal at any point. He is struggling to absorb meds right now so we were troubleshooting with his endo about the best plan to make sure he is getting his life saving hydrocortisone. We have some ideas, but he wanted to hear what GI said about the malabsorption before making major changes.  We saw GI last Friday and made some med changes in hopes of seeing some improvement. Unfortunately, we didn't see as much change as we hoped. We are adding another medication and running some labs. We are still hoping we can get this under control before we have to switch meds to IV form. We are still not feeding at all through Alex's feeding tube which leaves him hooked up to his port 24-7. It isn't ideal to stay hooked up to an IV all day for a 13 year old boy, but we will do whatever we need to to keep him healthy.

Last weekend Alex and I went away for the weekend with his church youth group for his confirmation retreat. We had an incredible time. I love to watch him enjoy his time and watch his friendships continue to grow with his friends that accept him exactly where he is. I was also able to have some fellowship with the other chaperones. We came home exhausted, but with our spirits renewed. I love that he doesn't mind having me around and even wants me to participate. He came to find me so we could zipline together!

After returning home Sunday, I had to turn around and fly out Monday morning to Cincinnati for training for my new job. In 13 years, I have never left Alex. I had a hard time leaving Monday morning. There were lots of tears involved. Once I arrived in Cincinnati I had a great time. Alex has been a patient of Thrive RX for almost 6 years. I got to meet people I have talked to for many years and I was able to see the behind the scenes of how Alex's TPN is made and how his supplies are pulled and packed. I also made a new group of friends. The 10 people in my orientation class had a great time and we really made the most of the time we were not in class. The kids did great while I was gone and it was good for me to get away for a few days. I was proud of myself for going despite my fear.

Tomorrow is one of our favorite days of the year...Dance Marathon at TCU. Hoping that the kids have a good day and feel good enough to enjoy themselves and that Alex and I can use our story to touch these students who give so much.

Ali

The Heart of Champion

I see a Champion in so many ways when I look at Alex. I see Bravery and Strength. I see Courage and Hope. I see Perseverance and Joy. He has always been and always will be my champion. I am so excited to let you guys know he will be recognized as a champion all year. We are so honored that Alex has been chosen as the 2018 Children's Miracle Network Hospitals Champion for Cook Children's Hospital! He will continue his work representing Cook Children's Hospital and letting everyone know how important Children's Miracle Network, Cook's and Family Centered Care are.

I wish I could talk about what an amazing week it has been, but unfortunately both my babies continue to struggle. What i can say is i was so uplifted by all of the prayers, messages, phone calls, hugs last week!I am so grateful for a group of family and friends that love us well.
Alex is feeling pretty bad. He is not absorbing his medications correctly and it is leading to a huge amount of problems on top of the stomach pain that we still have not gotten a handle on. We have several appointments this week in hopes of finding some relief for him.
Maddy woke up sick last Sunday and started to feel better for a few days, but took a turn for the worse last night with a worse cough and 104 fever. We are heading back to the pediatrician this afternoon to try and get Maddy on the mend.

We have a few fun weekends planned so please pray that the kids feel better and are able to enjoy some fun!

Pups make everyone feel better!

I had an answer to a prayer that had been heavy on my heart this week. It was a prayer request/fear I had only shared with a few. I will say it was answered in a big way on Friday. What I can say is I am so grateful for a church and preschool that loves our family so well through all of the circumstances of life. We are so blessed by Keller UMC and Building Blocks Preschool.

Praying for good news on the job front and a week of better health!
Ali

Tested

One of the promises I have made to myself is to be more honest about this journey with family and friends. We try to choose joy, but some days and weeks just aren't easy. This week has been a week where I feel tested. Things just have not been easy and I have been frustrated quite a bit.

When Alex had his big surgery in December it was in hopes of easing his pain and nausea. While we get glimmers of hope that this may be the case, it has been a hard two months for Alex. We STILL do not have the correct supplies from the home health company. Alex STILL has pancreatitis so he has quite a bit of pain and nausea. We have not been able to start feeds and Alex is not absorbing his meds correctly which is leading to a host of other issues. I so badly want for him to feel better and for things to be easier for him. It breaks my mama's heart to see him hurting and defeated.

My sweet girl has also had a hard few weeks. She is continuing to complain of her legs hurting every day. She is crying and asking for medicine to help her almost daily. We are not sure what the cause is, but we need to find her relief so she can be her crazy self.

Bruce has still not found a job and while that has a ton of stressors tied to it, the biggest is the lack of insurance/need to pay for COBRA. Alex is on a special program called the Medically Dependent Children's Program through the state. They will reimburse our premiums "if" they determine it to be cost effective. When we pay "regular" prices it is obvious and they just cover it, but because COBRA is so expensive ($1780/month) we have to "prove" it is cost effective. I got the call this week letting me know they need proof. The way they need the information is to have explanation of benefits downloaded from our primary insurance for all of Alex's care in 2017 and emailed to them. Here's the kicker- they have to be individually downloaded and emailed no more then 3 attachments to an email. Alex has 355 EOB's from 2017. The shear idea of tackling this is overwhelming.

Please pray for us this week. Pray for Bruce's job search. Pray for Alex's pain, nausea and spirit. Pray for Maddy's legs to stop hurting or for us to figure out why she is hurting all the time. Pray for me to not feel so much frustration and exhaustion while I try to care for everyone else.

Ali