So Thankful

All year long I try to focus on all I have to be thankful for, but at Thanksgiving it is even more apparent.

I am Thankful for so many blessings in my life...

My two precious babies. They are my everything. I never imagined my life as a Mom would look like it does, but everyday I am grateful I get to be Mom to two amazing kids who demonstrate more courage, perseverance and determination then i ever thought possible. I witness joy despite incredibly hard circumstances and love overflowing.

Even though Alex can't eat, he loves to help me cook.

I am grateful for doctors and nurses and a hospital who believe in family centered care. A team who work tirelessly to make sure they see my children as children, our family as a family and make choices and choose treatments that are in our best interest with all aspects of care considered. A hospital that counts me and Alex and Maddy and our experiences and opinions every bit as important as the medical professionals. A hospital who gives us opportunities to share our story, to help others, to make a difference. A hospital that gives us an opportunity to attend events and make memories. There are so many examples over the years, but this week Maddy got to serve as Grand Marshall of the Parade of Lights. (Alex was supposed to also, but he was sick).

Maddy with one of the VP's of Cook Children's. 

Maddy and Ralphie

Maddy and one of our favorite nurses from "our" floor

I am thankful for a church and school that have shown us love in so many ways. They continually meet us exactly where we are. For Alex, it is a place where he hangs out with his very best friends, gets to participate in activities, express his faith, be an actor, volunteer and so much more. For Maddy, it is a school and a church full of loving teachers, friends and learning. It is experiences and fun. It is her favorite place to be. For me, it is a group of women who have shown me love, who have taught me it is okay to just be me, to laugh, to cry, to steal their babies. It is a sisterhood who lift each other up and support each other through all the ups and downs of life.

I am thankful for our huge village. Our family and friends who continue to surround us with love and support as we continue on this crazy path of our life.

Ali

PS- A medical update on Alex...We went to the hospital last Sunday with a fever. He was discharged as labs didn't look bad and their was lots of flu and rsv. Monday morning Alex woke up with A LOT of pain and his labs showed his pancreas was flaring (Not full blown pancreatitis, but his labs had increased 6X from the morning before). Our palliative care doctor helped us get some pain management in place and he started feeling better on Thursday. he is feeling better each day. He also got an iron infusion to try and help his anemia/make him feel better.

As for Zoey... She will leave us in a week to begin her rigorous training. We are excited, but sad to see her go away. We currently have enough in our fundraiser for almost 2 months. She may need up to six months of training. We are SO GRATEFUL to everyone who has donated, shared our link and prayed. Please continue to pray that we can raise the funds necessary for her to receive all the training she needs to help Alex. Alex's Fundraiser

Update on my surgery and Zoey

It was a crazy week around here (aren't they all)!!!

Monday I was happy to get back to a somewhat normal routine with Halloween behind us. Tuesday was my surgery. I had to be up early to be at the surgery center at 8:00. I was ready to get the surgery behind me. I was there about 4.5 hours. Luckily they were able to remove all of the skin cancer. I have stitches from the middle of my nose down to my lip on one side. I was really swollen and pretty sore Tuesday, but it has improved each day. The hardest part has been the swelling of my lip making it hard to eat and talk! I tried to take it easy the rest of Tuesday and Wednesday, but that isn't always easy for me! I am grateful to some good friends who brought us dinners this week and helped with Maddy.
The other big news has to do with Zoey, Alex's service dog. Any of you who have followed my blog for a while know that we surprised Alex in December of 2015 with the news that we would be getting him a service dog, something he had asked for for quite some time. Zoey came to us in May 2016 through a trainer locally who had trained several service dogs to meet the needs of kids who didn't fit the mold of the large organizations (ie-seizures, diabetic alert dogs, etc) We struggled to coordinate training with that trainer and were largely left on our own. Last year they let us know that they were no longer going to be working with service dogs. We were upset, but given how fragile Alex's health was all of last year we just let it go. Zoey spent most of the last year living as a "regular" pet. Fast forward to last month, Alex's health has stabilized and he let me know he really wanted to finish training Zoey. I reached out to a friend and she knew of a trainer who trains dogs to detect low cortisol which was the main job we had wanted Zoey trained for. We met this trainer yesterday for her to evaluate Zoey and determine if she thought Zoey could do this work. She put Zoey through a number of tests, watched her with Alex and immediately picked up on Zoey's ability to detect when Alex isn't feeling well. I am thrilled to say that Zoey will be going off for 1-6 months of Training beginning December 3rd. Unfortunately, we are not in a position to do this on our own. I am doing something I have tried to avoid over the years...something I hate to do...I am asking for help. We have set up a fundraiser to help us raise the funds we need to make this happen for Alex. If you would like to help please click on the following link. If you are unable to contribute, please share and pray for us to be able to do this.
Help Zoey Serve Alex

Finally, we had some pictures taken of Mad for her 5th birthday. Here are some of my favorites:

Thank you for everyone who continues to love us, to support us, to pray for us.
Ali

A CRAZY Week!

I have said that in our family the week of Halloween is way crazier than Thanksgiving or Christmas! This week proved that to be the case. A Halloween Birthday is no joke.

Before I get into ALL the pictures...I need to say something. Thank you to our village for loving us well. Thank you for showing my children (especially Alex) that he can make a difference. For years, Alex asked me if God doesn't make mistakes then why does he have so much "wrong" with him. My answer was always that God doesn't make mistakes and that his purpose was to show people that you can still have a happy life and inspire others no matter what your circumstances. That sweet boy of mine has taken that message to heart and has found purpose through sharing his story.  He is committed to making our hospital, CMNH, and this world a better place. Helping him reach his goals whether through prayers, encouragement, or donations has strengthened his resolve and motivated him to push harder. So thank you for all you do.

Now for a picture documentary of the week:

Mad had her birthday party at Texas Ballet Theater with a surprise visit from Rapunzel!

After the party we headed to church for Trunk or Treat

Tuesday was a Costume Parade and Party at school

Tuesday night was TCU Boo with the TCU Dance Marathon Kids

Wednesday we took our traditional pumpkin pictures before school!

On top of all of that, Alex was the Tour Guide at the Annual Haunted House at the Hospital on Monday and Tuesday!

It was a week full of celebration and joy! We are tired, but our hearts are full. Please say some prayers for me this week as my surgery is on Tuesday. I have more pictures and an update on Alex and Zoey (his service dog) that I will share later in the week!

Ali