Extra Life

For the most part, this week has been pretty ordinary. We have done dance, school, therapy, doctor's appointments, acting and golf. We are all still trying to recoup our energy from last week. Both kiddos have been a little off all week and I am fighting a cold. Basically, a week of put one foot in front of the other and march on.

As most of you know, Maddy and Alex are Children's Miracle Network Champions for Cook Children's Hospital. We love sharing our story and explaining to people how important Cook's and Family Centered Care is. While we enjoy all of the events we participate in, there are two that stand out as favorites: Dance Marathon and Extra Life.

Extra Life is a 24 hour gaming marathon to earn money for Children's Miracle Network Hospitals. Because Games are Alex's very favorite thing, he loves this event passionately. He loves board games, card games and video games. If he isn't gaming, he is watching videos about games. Through Extra Life we have met fellow gamers who have taken Alex under their wing and become friends. While Alex realizes the impact we have by sharing or story, he also likes to use this event to raise money for Cook's so he feels more invested in the fundraising himself. If you feel called, please consider donating to his page and helping him meet his goal.

https://www.extra-life.org/participant/AL3X684

Thanks,
Ali

Alex and David (He is the leader of top earning team for Cook Children's)

Maddy and her best friend, Wyatt

Alex gaming in his room

Maddy during Circle Time in her class!

Maddy mixing her own formula

Maddy and JR (One of his favorite Gaming Buddies)

Trip to Houston

We left Sunday to drive to Houston for 4 appointments for Alex and 3 for Maddy. Overall the appointments went well, but it is always exhausting to cram so many appointments in such a short time. The appointments coupled with the travel leaves us all feeling like we've been run over by a truck by the time we make it home!

Monday morning Alex saw our pulmonologist and sleep doctor. Alex's last sleep study showed some apneas so we discussed our plan going forward. We are going to hold off on removing his tonsils and adenoids because no one wants to put him through surgery right now. He already has a bipap machine. We are adding a medication for allergy/asthma issues that hopefully will help.  We ran some labs looking for a cause for Restless leg Syndrome/Periodic limb Movement Disorder. We also did some pulmonary testing both standing up and laying down to see how much his abdominal distention is affecting his breathing while laying down.

Monday afternoon both kids saw our immunologist, who is one of our very favorite doctors. She didn't want to change much as far as Alex is concerned. She only wanted to remove a medication that can be dangerous with an immune deficiency.  We talked quite a bit about Maddy and the many infections she has had over the past 6 months. She ran a bunch of labs and we will determine our next steps based on the results of those labs. She also started Maddy on an allergy medication to help with her environmental allergies.

Tuesday we saw Dr. Koenig our Mitochondrial Disease Doctor/Neurologist. Overall she is happy with the progress Maddy has made developmentally. Her tone is still not great and her gait is still not normal, but compared to a few years ago she has come so far. She wants us to continue our therapy and is thrilled she is taking dance. She also wanted a bunch of labs on Maddy Moo. She had made some medication changes last visit with Alex (increased his seizure medication) and was happy to know we have seen improvement. We spent quite a bit of the appointment discussing his GI system and decline and whether doing surgery is the right choice for Alex. Dr. Koenig, Alex and I have been through SO much together and there is a high level of respect and trust all around. Alex and I wanted her opinion on our options. She did a great job talking to Alex and reassuring him that his voice counts!

Our last appointment on Wednesday was with Cardiology. For Alex, no changes. His device that closed his hole looks great and there is no sign of infection from April. Maddy still has a hole that is shunting blood. We will follow-up next year and if the hole is still there move forward with closing it.

As hard as this trip is several times a year it is so good to be with doctors who are so familiar with Mito and see patients like my kiddos day in and day out. I am SO grateful to our awesome nurse, Erin who traveled with us and spent 4 days as a part of our circus with no breaks and no complaints. We are lucky that we can all laugh and enjoy each others company to lighten up the hard times.

Thank you to everyone who prayed for us. We are happy to be home and enjoying a few quiet days before jumping back into our crazy schedule next week.

Ali

Highs and Lows

The past two weeks have found us experiencing some incredible highs and some definite lows. I want to start with the highs...

Camp John Marc is such a magical place. For the fourth year, we have had the honor of attending The Our Children's House Family Retreat. Our Children's House is the therapy Facility where both kids attend therapy. We first walked through the doors of OCH 12 years ago when Alex was 18 months old. The staff is like family to us. For 12 years we have walked into those doors multiple times a week and I have watched my babies fight with determination and perseverance. I have watched them triumph and gain skills one thought impossible and I have watched them receive SO MUCH LOVE! The staff pours so much dedication and hard work into these kiddos. And so once a year some lucky families get to attend family retreat. It is a weekend of zipling and arts and craft, of stargazing and making smores, but mostly it is a weekend of acceptance. I weekend surrounded by families who come from all different backgrounds, all different races, all different diagnoses, but who come together and share the common bond of a life that isn't quite what we thought it would be. There are familiar faces and new faces, staff who take their weekend to volunteer so we can have fun and make memories as a family. It is a weekend we look forward to each year to reconnect and enjoy what matters.

The Entrance

Sleepovers are fun

Ready to climb

At the top

Ziplining

Heading "home" to our cabin

I love the way she looks at her boy!

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Arts and Crafts

Swim time

Chapel Service

The chapel is my favorite place at camp!

Lap Dog

In other good news...Maddy is continuing to LOVE both school and Dance. She is so excited each morning to wake up and head out on her adventures. She is thriving in school and we are blessed with the most loving, kind, compassionate teachers and director. She is also making big strides in therapy since getting her feeding tube. Nutrition her body can process and absorb has made a HUGE difference for her. 

The not so great...  Overall Maddy is doing well, but her endurance and Immune system continue to struggle. 

Alex is not in a good place medically. His GI function has continued to decline and is leaving us with some brutal decisions about treatment. He is not feeling well overall and feeling poorly and not being well enough to get out and do what he wants coupled with the anxiety of what's to come is taking a toll emotionally as well. 

Please pray for this sweet boy and his spirit as he struggles with decisions no child should have to make. Pray also for this Mama whose heart breaks for her boy. Pray for guidance that we hear the doctors and make the best decisions possible.

Ali