Alex and Maddy

Alex and Maddy

Sunday, October 6, 2019

Highs and Lows

This week has been a week of amazing highs and awful lows...

Alex had a pretty quiet week which was much needed after last week/weekend.

Maddy had her usual school and ballet and therapy, but had some medical testing and fun events as well.

Victory Therapy Center and Riding Rebel continues to be the highlight of each week.

Maddy grooming Rebel

Obstacles

Riding Backwards

Riding Sideways

Maddy leading Rebel back to the stables


Maddy and her favorite volunteer, Kasey
Thursday was spaghetti dinner at school. Building Blocks has been so amazing for Maddy and our family. I am not sure what we are going to do next year! Mad loved her night playing with her friends. 
Maddy, Aylee and Rosalie
Friday started with some medical testing. I have had quite a few people ask about this. Maddy is diagnosed with Mitochondrial Disease like Alex. Mitochondrial disease can effect any organs in varying degrees from mild to severe. No two people with Mitochondrial Disease present in the same way. I often say that Maddy has reaped the benefits of our experience with Alex. Because we were able to diagnose Maddy so much sooner and start being aggressive in treatment of illnesses she has not progressed to the same level as he has. However, Maddy's looks can be deceiving. She looks completely "normal" by all appearances, but she has quite a bit going on medically. Besides our mitochondrial disease, we have a gene that is known to cause epilepsy.  Alex is diagnosed with epilepsy based on many seizures throughout his life. While Maddy has not had any large seizures, she has had some periods of "zoning out" so it was decided that we should do an EEG to see if there are any abnormalities. She has also had her thyroid testing come back our of range and increasingly abnormal for two years. We repeated labs again to decide if and when we need to treat. Maddy was a trooper for all these tests. 




After getting through the medical tests, we were able to turn our attention to the Fairytale Ball which Maddy looks forward to all year!














We are so grateful for HopeKids for allowing us the opportunity to make amazing memories together.

We have some very specific prayer requests this week! Bruce was laid off very unexpectedly on Monday. His company went through a restructuring and his position was eliminated. We ask that you pray for God to open amazing new doors. We also ask that you pray for our insurance to continue until he finds something new.

Ali

Alex continues to raise money for Cook Children's: Alex's Fundraiser

Sunday, September 29, 2019

Lots of Medical Updates

The last few weeks have been filled with medical appointments and news with a little bit of fun sprinkled in.

September 9th did not start the way I planned/hoped! I dropped Alex's labs off and was heading to take Maddy to school and I rear ended a truck with a tow hitch as I was coming to a Stop light. We were all fine, but I was without my car for 11 days. luckily, I had a rental after the first few days. The rest of that week was pretty quiet as i dealt with car insurance and medical insurance!

On the 17th, Maddy saw our beloved endocrinologist for the first time. She has had some thyroid labs that have been off and have been gradually getting worse, but not quite to treatment level. We had a good discussion with Dr. Thornton and the plan is to recheck labs in October. based on the results we will either start treatment or continue to recheck labs every 6 months to a year or sooner if she were to become symptomatic.

The following day, Maddy had an endoscopy and colonoscopy to try and figure out what is going on with her GI system and recent weight loss. Everything looked okay visually and subsequently by biopsy. Dr. Osutokun believes her motility may be worsening causing increased reflux and constipation. We are working on a new medication that may help.


Waiting Room


Pre-Op


Heading Home
After a few days of recuperation, we headed out for a family fun day!





Last Monday, Maddy had her appointment at Scottish Rite to evaluate her knee. (For those who don't know, Maddy's left knee is very unstable and is dislocating every time she straightens it). It was our first time to Scottish Rite and the hospital was very nice. The staff and volunteers were extremely friendly and helpful. The specialist we saw was an orthopedic doctor. He felt like we had made the right decision coming to see him, however, he needs to refer us to one of his partners who specifically specializes in knees. The knee specialist will order very specialized Xrays and CT scans and take a number of measurements. Based on those findings, he will determine if we should do surgery now or wait until she is a little bigger. he will also decide whether it can be done arthroscopically or needs to be an open surgery. Part of this decision will be based on whether they just need to tighten ligaments or if they need to also surgically repair bones. 

On Wednesday it was Alex's turn for an endoscopy and colonoscopy. Unlike Maddy, Alex's scopes didn't look great. The ulcers/gastritis that Dr.  O saw in August have gotten more widespread and he also has duodenitis and colitis. I am unsure of the plan at this time, but it definitely explains why Alex always says he has stomach pain. Poor kid! 
Waiting Room


Pre-Op

Waiting for our boy!
Friday Maddy Moo had a dentist appointment. We have worked hard on her anxiety over the dentist and she did great.


This weekend was centered around Church. I was lucky to attend our Women's Conference on Choosing Joy. It was nice to take a few hours for myself to refill my bucket. 

 When I think about values and traits I want to instill in my children Faith in God is always at the top of the list. Alex's faith has always been strong. He learned early on to rely on prayer when times are hard and because we home-schooled we did Bible Study every day with all of our other school work from Pre-k through 8th grade. This weekend Alex stood up before our congregation (along with two friends) for 4 services and gave a message about building your house on rock instead of sand. I could not be prouder of his courage and commitment to share his faith with others. 

If you have seen me over the past few weeks and I have been a little frazzled, now you see why! It has been a crazy month. As we head into our CRAZIEST month of the year, my prayer is that our days are filled with more fun and laughter than doctors appointments and tests.

Ali

Please consider helping Alex help other kids through his support of Cook Children's Medical Center. He is about 15% of the way to his goal. We have one month to go.  Alex's Fundraiser

Sunday, September 8, 2019

Dresses and Doctors

The weeks are just flying by as we keep up our crazy schedule.

Maddy continues to love school, ballet and hippotherapy. Alex is working hard on his classes and is excited for Improv to start back up this week. We had multiple appointments again, but I think I'll start with the fun!

Last Friday we met two of Maddy's close friends from school at Candytopia, a travelling exhibit full of candy sculptures. The girls had a blast!













Alex saw Nephrology on Tuesday. His blood Pressures have been high on a regular basis again. they want us to try a different cuff, but if they continue to be elevated we will adjusted his medications.

Wednesdays continue to be Maddy's favorite day. She loves her physical therapist, her riding buddy, her volunteers and especially her Rebel!





Thursday was not Maddy's favorite day as we had to pick up her knee brace to try and keep her knee from dislocating so often.  Luckily she has adjusted quickly and it hasn't slowed her down at all.


Friday, both kids saw GI. Overall, Alex is doing really well. However we are having trouble with one of his tubes and the extent of the ulcers that were found on his last scope were concerning. The plan is to do an endoscopy and colonoscopy in the near future to try and reassess the ulcers and to recheck what is going on with his tube. He also needs a Spine MRI under anesthesia so it will all be done together. Maddy Moo will also be having an endoscopy and colonoscopy to try and figure out what is going on with her nausea, pain and weight loss. We did do an Xray to rule out an easy cause like constipation.
Yesterday we started our day at Main event which is always a family favorite!

Alex and Anaise
We ended the night with Maddy and I getting dressed up to attend Rode to Victory, the fundraiser for her Therapy Center. It was a fun night!






Maddy and her PT, Suzanne

We found Rebel!

Buster Bailey, Katie and Wyatt's Horse




Thank you to all who have been praying for us. Maddy has adjusted fabulously to school, she is loving her little class and learning so much already. Alex continues to feel well. Please continue to pray for good health and no anxiety!

Ali

If you would like to help Alex and the kids of Cook Children's, here is a link to his fundraiser: Alex's Fundraiser