Medical and Zoey Update

This week was mainly a return to normal, but it felt really busy with lots of medical discussion.

Maddy had a good week with school, ballet, and time with friends. She loves life right now and is full of smiles no matter what we have planned.

Maddy and her best friend, Brooke

Maddy at the dentist

Alex is having some issues with increased stomach pain as well as some apparent problems with his TPN (IV nutrition) so I spent a good chunk of my week speaking to our dietitian, pharmacist, GI and nurse as we tried to come up with a solution on what we should do to make things better. I cannot say that we have come up with a solution but the discussions continue in hopes that we can get Alex feeling better again. It has been a long 2 years of almost constant pain and generally feeling unwell. We are anxious for him to get back to better days.

Both kids also saw hematology this week. Maddy has come such a long way from the days when we saw Dr. Beam on a monthly and sometimes weekly basis, because her blood counts were so concerning. She is doing great and is now seen just once every six months! Alex continues to do well in this area and his counts look much improved after his last blood transfusion and subsequent iron infusion.

Brave girl didn't even cry for blood draw

In other good news, our new insurance that we were so concerned about has been really easy to work with so far and they have been quick to get us approvals when needed. They are even working to try ad allow us to stay with all of the supply companies we know and love. Maddy's Hizentra (immune replacement) that was denied for several months last year was already approved and while she isn't thrilled to go back to being stuck with 4 needles a week, I am relieved to be able to keep her as healthy as possible and keep her from the decline that many mito kids experience with illness.

We had a visit from "our" Erin. Maddy was so excited that this time Erin and Greyson stayed till she got home. She loves babies as much as her mama!

Maddy holding Greyson

My Zoey update...I was thrilled to get a message from Beverly this week letting me know that Zoey has made enough improvement in her confidence that they have resumed scent training. We still have a ways to go, but each step forward means a step closer to home! We continue to raise funds for Zoey's Training and are so grateful to all have who stepped up to help us. Please continue to share our link so we can ensure that Zoey gets the full training she needs.
 Zoey's Fundraiser

Thank you to everyone who has reached out, prayed, and supported us. we are blessed you are in our lives!

Ali

Death

I have had many people reach out to me after my Facebook post to ask if something has happened with Alex. The short answer is no. The longer answer is something has been happening for eight and a half years.

Imagine being a six year old boy who spends most of their time in the hospital and doctors appointments. Imagine having a disease that you know the name of, but not a whole lot more. Imagine having a best friend, a brother of sorts who has all the same medications, all the same tubes, all the same doctors and all the same times in the hospital. Imagine that best friend dying one night while you are in a room just a few doors away. Imagine knowing at 6 that your disease could kill you. Imagine questioning why your doctors "let" your best friend die. Imagine the grief, but also the fear.

Fast forward three months and you contract an infection just like your friend and now you are fighting for your life. Imagine every week for  8 years sitting in appointments where doctors talk about treatments and surgeries and your life always with the undertone that your life could be short. Imagine being scared every time you have to go to the PICU, because that is where they send you to die.

Imagine knowing that the same line that sustains your life and provides medications and nutrition is the one that can and probably will kill you someday.

Fast forward again to the teen years where everyone is starting to talk about growing up and the future, but you don't know if you have a future. Imagine thinking night after night about leaving everything and everyone you know and love.

So no nothing has happened...we are living a life that most people cannot begin to fathom. We do our best to CHOOSE JOY and use our story to shine a light on GOD and the good in this world. But don't think for one minute that because we put a smile on our faces that this disease has not robbed us...it has caused us heartache and pain, fear and anxiety. It has stolen my son's childhood.

Pray for my sweet boy, his precious sister and for me. That I have the words to provide comfort and the strength to navigate each day as a mother in a life no one would choose.

Ali

School and Surgery

This week seems to have flown by! It was Maddy's first week back to school. She was counting down the days until she could see her friends and teachers again. By Tuesday morning she was almost giddy with excitement. I am so happy that she loves school, her teachers and her friends so dearly.

Tuesday we declared "best friend day". Alex and I (and Maddy) miss Erin dearly. But our friendship continues even though she no longer spends half her week with us. Erin and I got to spend some time enjoying each other and catching up while Alex and I managed to get some cuddles from precious Greyson. Oh and Mia had to get love from her Erin too!

Wednesday Alex had a "surgery" as he would call it. He had multiple procedures all done under anesthesia. He had an endoscopy, both of his feeding tubes changed, a deep dental cleaning and two teeth extracted. It has been amazing to watch him grow and mature over the past few years. A procedure like this (or really any anesthesia) was once enough to cause weeks of worry, interrupted sleep and lots of tears. Wednesday he handled himself with bravery and strength and didn't even show any signs of fear until the final moments before he had to say goodbye to me. and then in true Alex fashion, he asked me to pray with him. And so together we held hands and prayed for peace and for Alex to know he is never alone. We recited a bible verse and kissed goodbye. For 14 years, we have been a team my brave son and I. While I wish I could make his life easier, I am grateful for the way this life has shaped my view on so many things. I am truly changed because of the miracle I gave birth too. Knowing the day would not be easy, we had some special people step up to make it as easy as possible. My dear friend, Stephanie offered to keep Maddy after school so I wouldn't have to worry about what time we got home. Our angel, Sonny, who is the dearest friend to Alex came up and brought me coffee and kept me company so the time would pass more quickly. Beverly, Zoey's trainer sent pictures of our girl to put a smile on Alex's face when nothing else could. The sweet people that have been placed in our life make each day so much better. 

Bev always sends the best commentary

"Hi Alex"

"I spilled the water"

 "And I don't care"

"Am I still in Trouble?"

Maddy and Ally hanging out after school!

Alex is doing really well. He is still a little tired, but doing really well overall.

We continue to feel blessed by the love and support of those who walk beside us on this journey. Thank you for your love and prayers.

Ali

Zoey's Fundraiser

A New Year

We had a very quiet and relaxing end to the year. My Dad was here to visit from December 23 through the 27th. Everyone has stayed healthy. We have mainly just enjoyed time together as a family playing games and enjoying being together.

Picking Grandpa up at the airport

Making Reindeer food

Christmas Eve Service at Church

Christmas Morning

Every princess needs a Tiara to ride her bike

Last Friday we had an appointment with our GI doctor. He is thrilled with how Maddy is doing overall. Since her Feeding Tube was placed she has caught up to the size she should be. She made huge strides in Therapy and is thriving in school. We tweaked medications a little to help her reflux and constipation, but overall she is good to go.

We discussed some big changes with Alex. Our endocrinologist had asked us to discuss a major surgery that may be necessary in the future due to all the bouts of pancreatitis he has had. we did discuss it with Dr. O, but he doesn't feel like we are there yet, so we tabled the discussion for now. We made some changes to his TPN (IV Nutrition). The biggest surprise was that Dr. O has gotten FDA approval to use a medication with 5 patients that was pulled off the market years ago. He has decided Alex is a perfect candidate. We are still in the process of doing some initial testing, checking with other doctors and signing consents. If we can get this medication, the hope is that we could get enough feeds going through his feeding tube that we could just do TPN overnight.

On New Year's, Alex, Maddy and I took on a project we have wanted to do for some time. We went to the store and got enough supplies to make 10 "blessing bags". We will keep these bags full of necessities with us to hand out when we see a Homeless person. (We see them on almost every trip to the hospital). We even included a bible verse on Hope.

Our supplies

Filling the bags

Adding our bible verse

10 bags ready to go

Maddy had discovered the game of Life!

A Zoey Update... Zoey has now been gone 1 month. We were originally told it could take between one and six months. We miss everything about her. We miss her cuddles, her "eyes", her constant presence. 

In her down-stay at Walmart

She is continuing to work hard and make progress. She is consistently holding her down stay at Walmart even with kids and carts going by. She is still working on her confidence so they can once again begin their scent training. We are continuing to fundraise. We currently have enough for 3 months of training. We are so very grateful to all of the friends and family who have shared, donated and prayed with us to make this happen. I wish we had enough disposable income to just pay for it ourselves unfortunately that is not the case, so we feel blessed that others are joining us on this journey. If you would like to help in whatever way, here is the link: Zoey's Fundraiser.

My prayer is that this new year is one filled with good health, happiness, and amazing memories.

Ali