Alex and Maddy

Alex and Maddy

Tuesday, August 27, 2019

First days of School

I am not sure where the years have gone, but my babies are growing up! On August 19th, Maddy started kindergarten and Alex started 10th grade. Much of the last week and a half has been a whirlwind of trying to adjust to school and getting back on track.

Here are pics from the first day:



Walking in

Best surprise EVER! Nothing better than your best friend being in your class.

After school we also had our first day of ballet. Maddy has her two closest friends from school in ballet as well as another friend from church. Sure makes it fun!




Overall, the first week went great. Maddy had a hard time with drop off each day, but adjusted pretty quickly and was excited each day at pick up. We worked hard all weekend on having a better time at drop off and she has done FABULOUS the past two days. She is already learning so much and having fun with her sweet class of 12!!!

Medically, Maddy has quite a few appointments coming up. She was also fit for her knee brace which hopefully will be in in the next week. Alex continues to do really well.

Please continue to pray for answers for Maddy and for her to LOVE school and grow in confidence.

Ali



Sunday, August 18, 2019

Where do the weeks go?

How has it already been two weeks again?

Once Alex's show was over he had to deal with some medical tests. First up was an MRI of his pituitary gland. He handled it like a champ and the results were normal. A few days later he had an endoscopy. He has ulcerated spots that show a lot of inflammation, but they are not infected. We are using a medication to try and heal those spots. All else looks okay. Zoey continues to impress and her good behavior does not go unnoticed. She was even allowed to go back into the OR with Alex until he fell asleep for his endoscopy!

Ready for our MRI


Getting ready for Endoscopy


Afterwards
While Alex was getting checked out, Maddy had a week of Zoo camp. She had so much fun and they were great about making accommodations for her. She was assigned her own helper, napped everyday at lunchtime, and her helper gave her piggybacks whenever she needed!



Day 1



Day 2

Day 4
We also had a fundraising event for the hospital. No matter how many times we are asked to speak, I am always grateful for the opportunity for us to share with the community what their support means and how amazing cook Children's is. This specific event is great because the money raised goes to the facility dog program which is near and dear to our heart.

Dinner before speaking


Our best girls!


Speaking is more fun when your bff can come

Maddy and Nealy



Maddy and Natalie
Last Sunday we headed down to Houston to see Dr. Koenig and address some of the issues going on with Maddy. Our appointment was first thing Monday morning. For 12 years, Dr. Koenig has been the leader of our medical journey. For twelve years she has listened to me, cried with us, laughed with us, given us devestating news and given us hope. But mostly for twelve years she has loved my children and worked hard to ensure they are receiving the best care possible.  I'll start with Alex because he is easier(how's that for a change!)...He has been having some episodes where his vision goes black and then returns. We were concerned it was seizure activity. Dr. Koenig thinks it is related to his dysautonomia and told us just to keep an eye on it. Otherwise he is doping really well and she is happy with him! Maddy moo on the other hand has had a rough few months. Dr. Koenig is extremely concerned about her joints and particularly her knee that is dislocating multiple times a day. She is doing damage and as of yet we have not been able to get in with therapy due to insurance and wait times. Along with her joints, Maddy was diagnosed with fatty liver disease this summer which is likely related to her Mitochondrial Disease and is having increased GI symptoms. We are having to use more medications and and interventions due to pain and nausea and she has lost several pounds. Dr. Koenig ordered a number of labs including extensive genetic testing. She has also referred us to an endocrinologist due to some thyroid labs that have been off multiple times. Lastly, she ordered an EEG due to some staring episodes.

After returning home from Houston, we turned our attention to getting Maddy ready for school. We had Meet the Teacher and Assessments. Maddy was a little nervous, but had decided kindergarten is going to be great!
We always need love from Mrs. Mitchell


Maddy with her new teachers!

Ready for assessments
And of course there was therapy to make our week better. When Maddy gets on Rebel she lights up. She loves her horse, her therapist, and the volunteers who make this possible.






As we begin this week, I ask for prayers for Maddy. She is nervous. Pray for her to feel the love I know will surround her. Pray for comfort and confidence. Pray she is kind to everyone and receives kindness in return. Pray for the most amazing kindergarten year ever!

Ali

Alex is once again raising money for Cook Children's Hospital. If you would like to donate, please visit his fundraising page.

Thursday, August 1, 2019

A whirlwind of fun!

These past few weeks has been a drain on me as Mama, but it is so amazing to watch your kids getting to do what they love in life and exude joy!

Maddy has been ecstatic to spend the last few weeks in ballet camp and Horseback riding. We like to joke that she transforms from ballerina to cowgirl, but nothing makes her happier. Starting Hippotherapy has been the best thing. I have honestly never seen her as happy as when she is riding Rebel.

Ballet Camp Day 1

Rebel gets applesauce for a job well done



From ballerina

to cowgirl


Maddy loves the volunteers who help her each week.

Maddy's first time using reins

Miracle treat day

Breakfast with her BFF

BEST DAY EVER





On a Trail ride




Did I mention we've also been to the pool a few times?
While Maddy has been dancing and riding, Alex has been acting. All year he looks forward to Summer Theater Workshop. I love to watch the hard work that goes into this three weeks, but my favorite part is the friendships that form and the sense of unity that comes from working towards a common goal. This year Alex was cast as the King of hearts in Alice in Wonderland. He loves taking a role and making it is. He really is quite a good little actor and it is so fun to watch him come to life on stage.


STW day 1

Blocking Scenes



Dress Rehearsal







Opening Night

While the kids were busy enough...I challenged myself and competed in CG games. It was a grueling competition full of running and 12 lanes of hard exercises. I was nervous to do it, but wanted to prove to myself that I can accomplish anything I set my mind too. The amazing thing about CG is the community atmosphere that is always felt. The amount of encouragement from fellow competitors, judges and volunteers was enough to make anyone feel inspired. It was one of the hardest things I've done, but the sense of pride I left with was a feeling I won't soon forget.


Medically it has been a mixed bag. Alex has been doing pretty well overall. He is having an MRI this weekend to look more closely at his pituitary gland. he will also have a procedure next week with anesthesia, but overall he is doing well.
Maddy has continued to struggle. She is having stomach pain and nausea daily. She hasn't been eating well due to this and has lost a few pounds. She continues to struggle with her joints and specifically her knee which is dislocating multiple time a day. We are waiting on insurance to work with us so we can get her in for a brace and some therapy to address these issues.

Thank you for walking this path with us...for celebrating the highs and struggling through the lows with us.
Ali

Alex is once again raising money for Cook Children's Hospital. If you would like to donate, please visit his fundraising page.