Alex and Maddy

Alex and Maddy

Saturday, April 8, 2017

Update on Appointments and some EXCITING news!

This was a crazy week! We were supposed to be heading to Houston on Sunday to start a long week of appointments. However, mother nature had a different idea. We had severe storms here Saturday night into Sunday morning and Houston was expecting "damaging storms" later in the day on Sunday. After talking to friends and watching the news we could not find a window that seemed safe to get on the road. So we wound up leaving at 5:00 Monday morning in order to make it to our first appointment.

Monday: We started with Pulmonary. Alex's pulmonary testing is never great and he has one test in particular that is consistently very concerning. It is a test that measures the strength of your inhale and exhale. Alex has extreme weakness of his chest wall muscles which makes taking good breaths difficult. That coupled with his extreme GI bloating really effect his Pulmonary status. After we explained to our Dr. how fatigued Alex has been lately, it was decided that we needed to try and offer him more support. Our pulmonologist feels like it is very likely that he is working so hard to keep his O2/Co2 balanced that he is exhausting himself. He wanted to ordered a Trilogy Ventilator that can be used with a cannula to deliver positive pressure and help ease the load of his breathing. We completed some other interesting testing on both kids and set up a time to meet on Wednesday before moving on to our next appointment. next we saw our beloved, Dr. Pacheco. She is so much more then a Doctor to us. She loves the kids like they are her own and she is a doctor I can be completely candid with. She felt great about the pulmonologist's plan for Alex. She doesn't feel like his immune dysfunction is adding to his current struggles, but did add some labs to be sure she cannot help in any way. She gave me some advice on some concerns with Maddy and what she thinks we need to do. She also ordered labs on Maddy as she is watching her immune system very closely. We finally made it to teh hotel at around 4:00 Monday afternoon! Alex and I had to make a really quick turnaround for our rescheduled sleep study! I was so glad to have Mimi and PopPop with me to entertain Maddy while I quickly re-packed what I needed for the night and kept her happy while I was gone!

Tuesday: We saw Dr. Koenig, our mito specialist. Overall, she is happy with how Maddy is doing. She wants us to continue aggressive therapy to try and help with her hypotonia and myopathy. She was concerned about Alex. She increased his seizure meds (he has been complaining about feeling like he is having seizures) and checked a slew of labs to be sure nothing else is off. She also agreed with the trying to help the fatigue by addressing his pulmonary issues. This is another appointment where our Dr and her incredible staff are so much more then our medical professionals. They love my babies so much and it is so nice to be at an appointment where everyone knows you and your kids so well that you can just be you! Maddy entertained the "girls" with dances and lots of surgery, while I was able to focus on the appointment. We headed out to Kemah Boardwalk after our appointment for some fun! Unfortunately, most of the fun attractions were closed, but we had a nice lunch on the water before heading back.

Wednesday: Another busy day as we headed to the hospital early to complete labs before our appointments started. I was able to draw all of Alex's labs off his central line. I had my blood drawn (we are repeating some genetic testing). Maddy was the difficult one as they stuck her three times and couldn't get any of the labs. The lab was concerned about how dehydrated she was and wanted us to call our doctor to get some fluids for her. We just tried to convince her to drink more! But we left Houston without getting any of the labs ordered on her. We were already running late after the lab to meet up with the pulmonologist and supply company to pick up Alex's new machine, fit his cannula and adjust settings. From there we rushed to cardiology for both kiddos. For now we are just status quo there, but both kids will have echos when we go back in October.

Thursday was Alex's yearly MRI of his spine and we were excited that for the first time ever his syrinx appears a little smaller! This was awesome news.

I am always proud of my kids, but I was especially proud of Alex this week as he endured test after test that normally cause major anxiety and handled them all like a champ. The maturity he displayed was awesome to see.

I am so grateful to my Mom and Tom for all their help this week as this would have been really difficult without an extra pair of hands. They kept Maddy entertained and happy through countless appointments and long hours at the hotel.

Now for the EXCITING stuff!!!!

Alex was nominated in February for the first ever Kidd's Kids Teen Trip. It is a trip to Disney, Universal and Seaworld the first week of June. We returned from Houston to the exciting news that Alex was selected as one of the teens to attend this trip. We will be travelling to Orlando and staying at Give Kids the World. We are so excited and so happy that once again he is being honored for the incredible spirit he shows despite his challenges. We are so grateful to Mimi, Karol, the Tagordas, and Pastor Molly for writing letters in support of him. We can't wait to share more as we find out the details over the coming weeks.

Our craziness is not slowing down as we say goodbye to Mimi and PopPop and then greet Grandpa this week as he comes to visit for a few weeks! Not too many pictures this week. Hopefully more next week!


 Love how much these two love each other!

 All tests are easier when you have your sibling to help!

 Not sure he is the one who should have devil horns!

 Sleep Studies= Awesome Hair

 Appointments are Exhausting!

 Maybe the first time I have a smiling picture from Pre-Op!

 Maddy and Mimi at the Park!

 We even found some animals to pet!

Home to our sweet Mia!

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