A Princess Ball

So often our days revolve around doctors appointments and therapies, medications and needles. But we are also blessed to have some amazing opportunities to experience special moments and create memories. Many of those special times are brought to us through an organization called HopeKids. Hopekids provides events every month for chronically ill kids and their families. We are always excited to participate.

Maddy and I had a Mommy daughter night and attended the Fairytale Ball. It was such a fun evening. All of the princesses were there and we got to ride a horse drawn carriage. Last year I was able to get pictures of Maddy with most of the princesses. This year she only wanted Rapunzel. It was a night she will always remember!

Getting ready for the Ball

Mommy and her Mini-Me

Meeting Cinderella

Talking "princess" with Rapunzel

Posing Together

One of many hugs

Maddy and her friend, Avery

Dancing

More Hugs

Maddy with Rapunzel and Merida

Riding the carriage with Rapunzel

Maddy and her friend, Phoebe

 Please continue to pray for us this week. We are trying to see if we can help Alex feel better and have some more energy. I meet with the plastic surgeon this week to discuss my surgery. One of Maddy's important medications was denied by insurance. Pray for us all as we go through this week.

Ali

Here is the link to Alex's page

A Quiet Week

This week has been pretty quiet as my Maddy Moo got sick Tuesday evening. We wound up spending most of the week at home trying to recover with a few doctors appointments thrown in.

 On Tuesday, Mad did get new "pretty feets" (braces she wears for her feet and ankles). This times she chose puppy dogs. They are really cute. She can't wait to get back to school to show all of her friends.

Alex had an appointment with the endocrinologist. We ran some testing and are starting the process to begin growth hormone. Unfortunately, our doctor has already warned us we are probably in for a fight with insurance as they are likely to deny it despite the fact that he is well below the growth chart and dropping.
In other news, we think we have finally found a solution to Alex's port not working correctly. This week we used a bigger needle and it has worked really well. It was a little more painful for Alex, but hopefully he will get used to it and it will continue to work as well as it has this week.

Oh and Alex got a MUCH needed haircut!

I have a few prayer requests this week... for Maddy to get back to 100%, for Alex to continue to feel better and his port to work well. I also have a prayer request for myself. A few weeks ago, I went to the dermatologist for a skin check and they biopsied a spot by my nose that looked suspicious. It came back as a form of skin cancer. I have an appointment with a plastic surgeon on October 2nd to discuss the surgery I will be having to remove layers of skin until we are sure it is all gone.  Please pray for an easy removal and quick recovery as well as the kids to stay healthy while I take care of myself.

Ali

Here is the link to Alex's Fundraiser if you feel called to give:
https://www.extra-life.org/participant/AL3X684

Goodbyes and Reunions

Anyone who knows me, knows I am awful at goodbyes! I cry easily anyway and goodbyes are so hard. So how do you say goodbye to friends who have meant so much? Anyone who has followed our story for any time knows that Alex's early years were shaped by his playgroup. Those friendships carried us through some of our hardest days  and created memories that we will always treasure. So when Maddy was born I immediately turned back to MOMS club to form the same kind of bonds that were so crucial to us. In came Katie and Wyatt...Our first "playdate" was when they were 3 months old. I am pretty sure they slept through the whole thing. It was the first of oh so many times together. Playdates, adventures, Kindermusik, lunches, birthdays, we shared them all. So many times Katie stepped up and kept Maddy while Alex was having surgery or in the hospital because I knew with them was where Maddy was the most comfortable. When Katie told me they were moving it was with dread that I thought of the day we would say goodbye. It wasn't any easier then I imagined. Maddy and Wyatt will always be each others "first best friend".  I could find hundreds of pictures of these two together, but I will post some of our earliest and some of our last pictures.

Not the first, but one of our early playdates

Pumpkin Patch 2014

These two are always hugging

Horseback Riding

Saying goodbye

After the heartbreak of saying goodbye on Friday, I was so glad to have something to look forward to on Saturday.  We had a Kidd's Kids Reunion which meant a chance to spend time with the Glenn's! We always have such an incredible time together. It always surprises me how well all nine of us get along and the five kids never have disagreements. We spent the morning at the Crayola Experience.  It was fun, but for us the time together was so much more important.

Making a Crayon Ring

Drip Art with the girls

Labeling our crayons

Maddy and Jayla

The Kids

Medically we hit a big milestone this week...After 10 months with absolutely no feeds going in Alex's feeding tube, we started pedialyte at 10 cc/hr on Thursday. The plan is to creep up ever so slowly as Alex tolerates with a goal of 30 cc/hr. If we can get there we will switch to 1/4 strength formula. This is a big step forward. We would appreciate any prayers or good wishes for him to tolerate feeds into his intestines.

Ali

Link to Alex's Extra Life Fundraising Page:

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

Update on Surgery

This week was mainly a week of survival. Alex's temporary PICC line wasn't functioning correctly and we were just trying to make it until surgery day. Our nurse (who is 7.5 months pregnant) got really sick and wasn't able to work all week. So I had a little extra do, but I also got some treasured one on one time with my sweet boy.

Alex's surgery was on Friday. Usually leading up to surgery his anxiety is terrible and he struggles to sleep and focus on anything else. This week he was so calm and did great. This is just one more sign of how very far we have come this last year. Alex's surgery went exactly as planned. We have had the same few anesthesiologists multiple times over the past year and a half. They have worked tirelessly to tweak Alex's safe anesthetics (which are VERY limited) to help him do as well as possible. He woke up feeling pretty good on Friday and has had some pain, but overall has felt really good. He even went to church today.

This weekend we have undertaken a project for him as well. Years ago, Alex asked for his room to be painted and he chose a BRIGHT blue. His room was also decorated with zebra decor because he loves zebras. At 14, it was time for a change. He chose a light gray color. Bruce painted all weekend and we hope to get all the furniture put back tomorrow. He has framed a bunch of his treasured video game posters that he has been gifted from his Extra Life buddies. Some are rare editions, some are signed, all are special. He cannot wait to enjoy his "new" room.

Sleepover in the playroom

The old room

In Progress

A lot less blue!

Mad and Zoey hanging out

All Contained!

Maddy's Zoo to tame her stuffed animals

Maddy had a good week. She was absolutely beaming each afternoon when I picked her up from school. She had an appointment this week to get new "pretty feets" (braces she wears for her feet). She chose a really cute Puppy pattern. She was so lucky on Friday to spend a whole day with one of her very favorite people in the whole world! When she found out she would get to hang out with Mrs. Mitchell while Bug had surgery she kept asking him if it was time for him to go to surgery yet! We are so lucky to have so many people who love us so well.

Mad loves stuffed animals. They were overtaking our house so we ordered a zoo. She was really happy when it came yesterday and Daddy found a few minutes to put it together when he took a break from Alex's room. 

Hopefully this week we are back to our crazy normal!

Ali

PS- If you would like to support Alex in his fundraising for Cook Children's Medical Center and Children's Miracle Network Hospitals click here. Alex has set a huge goal of $5000. He is well on his way thanks to some incredible donations! If you are unable to give, but would like to help, please share his link.

Problems, Ports and PICC's

Here is the medical update on Alex...

For this one I have to actually go back all the way to May! The last week of may we went to the hospital with a fever. Our initial blood culture from the ER was positive for Staph Epidermis, but was ruled a contaminant. The decision was made for us to treat for 10 days with antibiotics anyway due to his history, but no one was worried. Fast forward to June...A few days after returning from our trip to Washington, Alex spiked a fever and we headed to the hospital. All blood cultures were negative and we returned home a few days later. July...Yet again another fever and another positive culture from the ER. Again ruled a contaminant. Once again we treated for 10 days. As we geared up for tech week of Annie, Alex was feeling horrible. He powered through as he didn't want to miss his show and his temp never went above our threshold for admission. We survived our trip to Mimi and PopPop's, but several days after returning we once again had a fever. Same story. This time the decision was made to remove his port. WE have 4 admissions for fever within 3 months. We have no other explanation. So last Friday (August 24th) his port was removed and a PICC (peripherally inserted central catheter) was placed. This is a line that still allows him to receive all his nutrition and meds while we complete yet another round of antibiotics. Next Friday, September 7th, Alex will go back to the OR to have a new port placed.  We are hopeful that this will finally allow him to feel better and get closer to his baseline of a few years ago. He is tired of feeling bad and not having the energy to participate in activities.

As many of you have seen on Facebook, Alex is gearing up for his favorite Fundraiser, Extra Life. It is a 24 gaming marathon that he has participated in the past several years. All of the money he raises goes to our hospital, Cook Children's Medical Center. Each year he sets his goal higher as he yearns to make a difference and find purpose in his struggles. If you feel called to give please click on the link below to reach Alex's fundraising page.

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

Thank you for all of your prayers as we try and get Alex back to a more stable place!
Ali

Firsts

After returning from the beach we had a busy week of firsts...Mad's first day of school and Ballet and Alex's first day of High School!

August 21, 2018: Maddy's first day of Building Blocks 4 y.o. Blue Class

Maddy and her best friend, Brooke

August 21, 2018: 1st day of ballet at North Central Ballet

August 27, 2018: Alex's first day of High School

Beckwith Academy of Excellence

Annie and Myrtle Beach

After a totally crazy month I finally have time to sit down and blog. Because it has been a crazy month, I have decided to separate my posts. This post will focus on our trip to Mimi's and PopPop's, then I will do one on our start to the year and a third on Alex's medical battles.

Alex had such a great time once again doing Summer Theater Workshop. The friendships that are made and renewed each year are amazing. These kids are together for 3-4 hours a day for 3 weeks straight and they enjoy every minute. Alex loved his role as Bert Healy and worked hard to do his best despite not feeling well for the last week.

Alex and David (President Roosevelt)

Getting in makeup

Alex, Maddy and Ellie

Alex, Maddie and Dylan

Alex and Blayne (Daddy Warbucks)

The Dream Team

The day after the last show we flew out to Mimi and PopPop's for our annual beach trip. It was amazing as always, but this year was a little harder then past years. This trip was very eye opening as far as how much Alex is struggling right now. We do the same things year after year and for the first time Alex was not able to do many of our favorite things. When he was able to get out it was for extremely short periods of time. We made the most of it and just enjoyed time with family.

Fun with Uncle Jimmy

Alex and Skye

Mimi's Boy

Alex and PopPop

Getting ready for the River Cruise

Beach time

Mimi and her babies

Miniature Golf- one of our favorite things to do

Alex after a hole in one!

At the Zoo

Driving GoKarts

Alex and one of his favorite people, Mary!

Dancing with Mimi

Mama's Redhead

Pics on the beach

The girls

Some of the cousins- We miss you Skye!

While this trip was hard on Alex, we are always grateful for the amazing memories we create during our treasure time in SC!

Ali