Happy Birthday, Madelyn Paige!

As I woke up this morning I thought back four years to a Halloween that was nothing like I expected. On October 30th, 2013, I called my OB/GYN concerned because Maddy was not moving as she had been for most of my pregnancy. They asked me to come in the next morning at 9:00. When I arrived at the office they tried to stimulate Maddy to induce movement. When they could not get any movements they rushed me to the hospital to be induced. Madelyn arrived at 4:50 PM and changed our lives forever.
Oh my Maddy Moo....She was and is such a doll. She can be the sassiest, spunkiest, most strong willed little toot. By she has the sweetest heart. She is a nurturer and has a kindness unlike any other. I catch her all the time consoling friends who are crying. She is quick to cuddle and hug and say I love you. She loves her friends and her teachers, but it is her family she adores. She looks up to her big brother and wants so much to spend every waking moment with him. She loves to read, play dolls, play with her animals, play dress up and do arts and crafts. She loves to dance. She is Mommy's helper and loves all things girly. She is funny, god is she funny. She makes us laugh all...the...time! Her joy is infectious. She is such a Gift from God.

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My precious Madelyn Paige-

How very long we waited for you. Oh my sweet girl, you were so worth the wait. I love to watch the way you tackle life head on. Your personality is so much bigger then that little body. You are the most determined little girl. You are smart and independent, funny and stubborn, joyful and kind. You have so much love to give. Always go after your dreams with the same passion and perseverance you do now. Go into this world knowing you are a beloved child of god and spread your light to everyone you meet. I love you my more then you will ever know, Maddy-Moo!

Love,

Mommy

A Mixed Bag

This week was a mix of good and bad.

I'll start with the bad. Both kids have been feeling pretty cruddy. Alex has had some of the worst pain, he's had this year. We are waiting on a procedure in November that should help and then we need to make decisions about a major surgery that would be more of a long term solution. I feel bad as we try to keep him engaged and participating in life when he'd rather lay in the bed all day. Maddy is complaining daily of stomach and leg pain. We are trying to get to the cause of her pain so we can help her feel better!

The good...We had some fun events this week as well. Maddy continues to thrive at school. She is so happy to be there. I am so grateful for there love and care for Mad. Alex participated in the Cook Children's Haunted House this week where patients participate in scaring not only other patients, but also doctors, nurses and staff. It is something he really looks forward to and enjoys. Yesterday we went to a VIP showing of the Fort Worth Air Show for the sixth year in a row. We always enjoy it and appreciate Make A Wish inviting us. It was a little less enjoyable yesterday as out temps dropped from 86 degrees on Thursday to 56 degrees yesterday! BRRRR!!!We were all freezing!

Maddy's School picture

My Sassy Pants

Hair Cut Day

Air Show

In the tent waiting to see the Blue Angels

Alex's version of trying to stay warm

Alex and Erin

Sibling Love

Air Show 2017

Pretty Girl

Trying to stay warm this morning!

Please continue to pray for these precious babies. Prayers that they will feel better and be able to enjoy all of the fun we have planned over the next week to celebrate Halloween and Maddy!

Ali

PS- Alex's Fundraiser has one more week. He is doing great, but would be grateful for any other donations to help Cook Children's Hospital! Link to donate

Grateful

As we went through this last week, I realized how grateful I am for all of the blessings in our lives. It was a pretty ordinary week around here, but I saw so much to be grateful for.

On Saturday, I saw the joy of siblings who love each other so much. A brother and sister ten years apart who find a way to play and have fun and support each other.

On Sunday, it was a church where we feel at home. Where the kids have friends. Where no one bats a eye when Alex shows up with his service dog. Where I can laugh or cry and know I am loved.

On Monday, it was a special morning with my girl. It was ballet and haircuts and shopping and being girls!

On Tuesday, it was the amazing women who are quickly becoming friends in my bible study. It is women who encourage me and push me and allow me to be true to who I am.

On Wednesday, it was our amazing nurse. She loves my babies and they love her. She is a part of our family. She joins in our craziness and never thinks twice. She lets me vent when I am frustrated and laugh at the nuttiness that is our life. And boy do we laugh!

On Thursday, it was Maddy's school. Maddy is THRIVING in school. She loves every minute of it. She loves the teachers and the friends and the learning and the reading and music and playground. We are so grateful to a staff that loves her well and goes out of their way to make sure she is okay and safe.

Today, it was Mom's club. It was time with Mom's who are going through the same stage as I am. Friends who invite us over and let me show up in yoga pants with no makeup!

All week I watched as Alex's fundraiser crept up until he has reached and surpassed his goal. And I was able to show him how he can make a difference in this world by his choices, his story and the life he lives.Alex's Fundraiser

Thank you for being a part of our story. Thank you for helping us find the joy in a life that is not always easy.

Ali

PS- Sorry for no pictures...my computer wouldn't cooperate!

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