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