Alex and Maddy

Alex and Maddy

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




Saturday, July 8, 2017

A Much Needed "Normal" Week

After the craziness of the past few months, it felt good to have a week that was pretty standard. It was also a week with lots of friend time which was really nice!

Over the past few years we have been so blessed to be an ambassador for Cook Children's Hospital. Because of our work with Cook's, we have met some incredible people. Alex's favorite event was Extra Life ( a 24 hr gaming fundraiser for Children's Miracle Network). We have stayed in touch with two of the men who were active fundraisers. David had another gaming marathon last weekend and Alex was so excited to be invited.
Alex and David after a long day of gaming



Monday was Maddy's first day back to therapy and that was a hard wake up call for Ms. Thing! She would definitely prefer if no one ever made her do anything she doesn't want to! We are so lucky to have therapists that love my girl even when she is less then lovable!
Therapy is so exhausting!
Tuesday was a nice quiet Fourth where we just enjoyed time as a family. 

Wednesday was back to therapy for a much more cooperative day! 

Thursday was CRAZY! We had 4 appointments. We started the morning with a dentist appointment for Alex. He did a good job. The dentist has always been really hard for him and he really worked hard to keep his anxiety under control. Then we had a follow-up with his nephrologist to check on his blood pressures. The medications we are using are keeping his blood pressures in the normal range, so that is great! We finished off the day with a dentist appointment for me and therapy for Maddy. The highlight of Thursday was celebrating Erin's "Nurseversary". We had one nurse from the time Alex was 3 until he was 11. After many years it was just time to make a change. Since that time we have had 5 nurses, 4 needed to leave for various reasons after between 2 and 8 months. Alex has been dying for someone to make it to a year to celebrate a nurseversary. Erin started for us the week of June 20, 2016. She has been such a joy and we all love her. We just needed things to slow down a bit so we could let her know how loved and appreciated she is! 

This girl jumped right back into the routine of appointments.
Alex and Erin at VBS
Friday was a day with no appointments so Maddy and I got to spend some time with our good friends Katie and Wyatt (and Townes). We always love time with them and Wyatt and Maddy have been best friends since they were a few months old. 




Today we were lucky to meet up with some friends from our Kidd's Kids Trip at an event. The trip was so fun, but the friendships we formed mean so much more. The friendship, the understanding, the camaraderie is priceless. It brings me so much joy to see the smile plastered on Alex's face when he is surrounded by these precious friends.

Sometimes you have to wear a tutu to play!



We came home full of fun ideas for future get togethers. 

Maddy wanted some time playing with her sand and water table and I had to giggle at the many faces of my sassy girl!







She is such a light in our house...most days!

Unfortunately, a week that has been so full with fun and friends ended on a hard note as we have a recurrence of a leak in our kitchen that we spent quite a bit of money to fix over the past year. Hoping it can be repaired correctly this time and for a reasonable amount!

We have a week with some important doctor's appointments coming up. please pray for us as we have some decisions to make in care.

Ali

Saturday, July 1, 2017

Vacation Bible School

Phew...We made it a week without any emergencies!

I am not sure where to begin. This was a GREAT week, but we are EXHAUSTED!

Maddy made an awesome turn around. We saw Dr. B on Monday and she had an infection around her Gtube. He prescribed some medication and it seems to have cleared up. Even better, when we were there her lungs were SO much better! Her energy has rebounded and with it her Sassy spunk is back.

This week was vacation bible school at our church. We all VBS and it is something we always look forward to. I have volunteered for years. The poor directors. I went back and forth over and over about if we would be there. I finally decided we would try as long as they knew I might have to leave at any point. We made it all week! Maddy did great. She loved going each morning and is wanting to go to church every day! I had a great little class and enjoyed my teaching partner. One of Alex's best friends from church was one of my youth helpers and she was awesome. Alex volunteered as he has aged out of VBS!!! It was so nice to have a week focused on something other then medical!


The highlight of our week was meeting up with the Glenn's(our friends from the Kidd's Kids Trip). We have had this date on our calendar almost since we got home. We knew Jayla had some appointments in Dallas and we were going to try and get together. VBS is so tiring, but we weren't going to miss the opportunity for some time together. The kids jumped right in where we left off and we spent 3 precious hours just talking and laughing. All five kids love each other, but the relationship between Alex and Jayla is really special. They have some of the same quirks. They get each others silliness. They know how it feels to have medical challenges that make you feel different. They just click on so many levels. Each time we spend time with this precious family, Alex is grinning from ear to ear the whole time. We are already planning our next get together and hoping we can include some of the other friends we made on the trip!









We had promised Maddy the carousel. When it was broken we had to find alternatives!

The crew
Thank you to everyone who has supported us over the past few months. Whether through meals, thoughts, prayers, a call, the love has been felt. We continue to find ways to CHOOSE JOY and our friends and families make that possible!

Ali