Alex and Maddy

Alex and Maddy

Sunday, August 13, 2017

Summer Fun!

As everyone else's summer is winding down, we are getting ready to embark on one of our favorite adventures of the year. Every year we are lucky enough to spend 3 weeks with Mimi and PopPop swimming in the pool, going to the beach, playing lots of miniature golf and just taking a break from doctors appointments and therapy. We have made this trip annually since Alex was 2 and we look forward to it every year.

Before we head out we did manage to have some fun locally and to squeeze in some doctors appointments.

We are blessed to be a part of a group called HopeKids. They offer opportunities for families of chronically ill kids to make memories outside of the doctors office and hospital. This week we attended 3 events and had so much fun! On Sunday we went to TopGolf. Maddy loved every minute. Unfortunately, it was really hot and Alex did not feel well. This is an event that in the past Alex has loved. Hopefully next time he will feel better and get back to playing!


On Friday, we visited the Fort Worth Nature Center for a live animal presentation. This was one of the best events we have attended. Alex did not want to go, but I made him come with us. I think he enjoyed it more then Maddy. We spoke to the Presenter afterward and Alex may become a volunteer presenter and learn how to handle the reptiles! He is SO excited! Both my kiddos are animal lovers and they were smiling from beginning to end! We will definitely be back to visit again.

Box Turtle

One year old Alligator


Corn Snake



Pretending to be snakes

Skunk



Yesterday we spent the day at a local waterpark. The kids had a blast. Erin (Alex's awesome nurse), her husband and nephew met us and we had a blast on the slides, wave pool and lazy river. I don't have any pictures because we were too busy enjoying ourselves!

As most of you know, Alex and I do quite a bit of speaking for Cook Children's Hospital and Children's Miracle Network.  We had an event on Tuesday that supports one of our very favorite programs...The Sit...Stay...Play program that funds our beloved dogs. The Credit Unions host a bowl-a-thon each year and it is so fun. This year they let Alex invite some friends to bowl with him after we spoke. The kids had so much fun. We are so grateful for the experiences we have as ambassadors for Cook Childrens.









We also squeezed in 3 days of therapy and two doctors appointments! So needless to say we are all tired! But I love the chance to make amazing memories with my babies even if it wipes us all out!

Ali

Saturday, August 5, 2017

Friends

Both of my kiddos have my outgoing personality. We all thrive on being with friends and having time with "our" people. Unfortunately our circumstances sometimes hold us back from all of the social time we wish we could have!

The last three weeks of Summer Theater Workshop has been so incredible for Alex. The first week was really rough physically and we questioned whether we would even make it through. But the second week and this week were not as physically demanding and I have watched Alex have the time of his life. He has loved every moment acting, singing and dancing, but more importantly, spending time with friends new and old. He has left each day with a huge smile on his face and lots of stories to tell. I am so happy we decided to give this a try and we can't wait till next Summer to do it again!

Brooke, Ellie, and Alex

Alex and Maddie

Alex and Ellie

Alex, Lane and Ellie


Ellie, Quinn, Alex, Lane and Brooke

Ellie, Alex, Maddie and Brooke

Security Guard, Alex escorting Buddy off


"Sparkle Jolly"

Maddy hasn't felt great the past week, but we were able to sneak in one pool day with Katie and Wyatt! We are hoping this week she will perk up a little bit! 


This next week we have quite a few doctor's appointments. Hopefully, we have good updates all around!

Ali

Saturday, July 29, 2017

Being a Mom is hard!

Once again this week I don't have a lot to "report" because our week has been spent at the church preparing for Elf Jr! Volunteering this week gave me a lot of time to watch some amazing kids and reflect on my two and mothering in general.

So often I am so incredibly hard on myself and the job I am doing as a mother. (I am pretty sure all Mom's do this!)I know I don't stop what I am doing and just "play" enough. I lose my patience more often then I would like to admit. I am tired and cranky at the end of the day, etc, etc, etc. But as I watched Alex this week push himself through being exhausted and not feeling well, I was so incredibly proud (as I often am) of the way he conducted himself. As I picked Maddy up each day from the nursery, exhausted, but smiling...I realized...My kids both choose joy on a daily basis. They are kind to others. They are polite. They are helpful.

 So I may not be doing this Mom thing perfectly, but if I can continue to raise two kids who are good kids and who can find the positive in every situation then I am doing okay!








Saturday, July 22, 2017

Love Done Well

As I sat thinking about our week and what I wanted to Blog, I kept coming back to Keller UMC. Our week has revolved around the church. Alex is participating in their Summer Theater Workshop. It consists of two and a half weeks of rehearsals and then three shows. But this story really starts 13 years ago...

It begins with a director of Children's Ministries who has loved this boy since he had white blond hair and big blue eyes and could talk for hours. Who continues to make sure he is included no matter what.

It is about a first Sunday School Teacher who took that little boy under her wings and kept him safe. Who made sure my Mama's heart knew he would be okay. Who still sends us messages of love from another state.

It is about the number of times they have changed snacks or activities so Alex could be included.

It is about the hundreds of times I didn't pre-register and showed up at the last minute knowing we would be welcomed with open arms.

It is about the friends who love Alex exactly as he is and make him happy to be around. Who catch him up on what he has missed and make him laugh and love going to church.

It is about pastors who offer to help when you need someone to sit with your child in the hospital.

It is about directors who say, "It is okay of he can't make it to rehearsal everyday. Just let him come when he feels well enough and we will make sure he knows what he needs to."

It is about the thousands of times prayers have been offered, accommodations made, love offered so a boy would know he is loved and accepted EXACTLY as he is.

Saturday, July 15, 2017

Amazing End to a Good Week

This has been a good week!

 The week started off pretty slow with only therapy Monday and Tuesday. Wednesday we had a doctor appointment and violin lesson for Alex. We saw our pulmonologist. It was an overall good appointment. Alex's testing is always a mixed bag. Some of his testing has improved and is the best we have ever seen. Other tests remain terrible and are even slightly worse. For right now we will continue our course of Bipap with a back-up rate to help him over night and continue to check his function every 3 months. We were excited to get back to see Sonny and have a violin lesson. Sonny and Alex have such an amazing relationship and could spend all day, everyday hanging out. It's a wonder they ever get any violin in!
When you are heading to Violin, you must wear your Sonny shirt!

Princess Madelyn
We have been telling Maddy for teh past few weeks that when we ran out of pullups/diapers she was going to have to wear panties because I wasn't buying any more diapers. So Wednesday afternoon we transitioned to panties. Overall, she has done great. Only 2 accidents, but she would be much happier if I would just put her back in diapers! We told her she used the potty we could let her sleep in her big girl bed and go to the pool. So Wednesday night she slept in her big girl bed for the first time (we've had it since early June). Thursday we headed to the pool for a fun morning!

Friday was a crazy day! We started the morning with GI appointments. We had really productive appointments for both kids. Maddy has gained 2 lbs since getting her tube. So he was really happy with that. Her reflux has been getting increasingly worse since April. We do not want to have to put her through another surgery so we increased one med and are switching a second. We may add a third med and see if we can get it under control. Dr. O is also concerned that she had pancreatitis following her surgery. He feels like we need to test for Hereditary Pancreatitis (which Alex has). He is pretty sure it will come back positive, but feels like it is important to have it documented to help us make treatment decisions going forward. As for Alex...The main discussion was about the mass that was found outside his colon in May. We will be scheduling an MRI to try and get a better visual so we can see exactly what it is and what we need to do to remove it. We also discussed how he has been doing since his last procedures and what we may need to consider for future treatment.

After our appointments, Maddy and I went to meet our buddies at the pool and spend some time together. I didn't get any pictures at the pool, but did later in the day.
Best Buddies
Friday night was exciting. This is something I haven't discussed openly for safety reasons. Last August, Bruce started living/working in San Antonio Monday through Friday. He would come home late Friday night and leave Sunday afternoon/evening. It started off not bad, but as the year has gone on we have run into two main issues. One, financially it is a struggle for us to afford to residences on Bruce's salary. Two, when one of the kids is sick or needs to be hospitalized, it is really hard for me to juggle meeting everyone's needs. Bruce has had an incredible boss and he acknowledged how difficult this was for a family in our situation. He recommended Bruce for a transfer to a different division in the company. Starting Monday, Bruce will begin his new position back here! The kids are so happy to have daddy back home, but we are all working on adjusting to a new norm!
Maddy helping take apart her crib!
Today was an incredible day! Alex has been able to experience some amazing experiences and today was one of those days. Today, Alex got to do something most people never get to do in their lives. he rode in a Ferrari! Our friend the Glenn's let us know about an organization called The Ferrari Kid. The Founder and CEO is a cancer Survivor from childhood and wants kids with cancer and other illnesses to experience an amazing day to take their minds off what they are going through. Twelve selfless Ferrari owners brought their Ferrari's to take these kids on the ride of a lifetime. The Ferrari's delivered them to main event where we had lunch and spent the afternoon playing and making memories. If I'm being honest, none of us were that excited to go this morning, but we got in the car and all agreed it was one of the most fun days we have had!
Pulling into Main Event









Alex and Sean (his driver)

All the Ferrari Kids and Drivers

Alex and JP (An old friend from Night of Superstars)

Alex and Manny (Founder and CEO)

Alex, Jayla and Manny

Best Big Brother

Weeks like this make us so grateful for all of the incredible blessings in our lives. We love spending time with friends and seeing the good in generous people!

Ali