Alex and Maddy

Saturday, December 21, 2019

So much to be thankful for!

I was going to say that I wasn't sure how a month had gone by since I last updated, but as we all know at this time of the year, time seems to fly by. We have stayed incredibly busy with some fun and some medical.  I will start with the fun and then update on the medical stuff for the kids.

November 21st was Maddy's last day of school before Thanksgiving break. As is tradition at her school she had her Thanksgiving Feast. I have loved to watch her little class this year. There are only 13 of them and they truly love each other. That was so clear during the feast as they were all smiles and hugs.









On the 23rd we were lucky enough to go see Frozen 2 which we all loved. The week of Thanksgiving was mostly quiet and just enjoying time together as a family which included a Nerf war and walking the dogs.



And of course there was also Horseback riding!

And doesn't everyone dress up as Rudolph on Thanksgiving day?
On December 3rd, Gramma and Grampa (Bruce's parents) came for a visit! We had fun and crammed lots of activities into the days we had together. We went out to eat, went to horseback riding, a Celebrity Cutting event and Saddle up with Santa and squeezed in some playtime at home.

























On December 11th, Alex had the amazing opportunity to film a commercial for Cook Children's. He had so much fun and everyone involved were incredible!



And there was more horseback riding...

And Cuddling...

And ballet...



This past Tuesday Maddy had her Christmas Performance and party.







Wednesday we had an ice cream date with Mrs. Mitchell and she came to watch Maddy Horseback ride.




Phew...Told you we have been busy. It has been a fun few weeks and we truly do have so much to be thankful for. We look around and see so many blessings...from teachers and friends and family members who love us to family members who helped financially so we could ensure that bills were paid and the kids are able to have an Amazing Christmas.

Medically it has been a mixed bag. Alex has not had his best few weeks. He is having increased GI pain which then sets off other issues liked increase problems with his adrenal insufficiency and hypertension. But we are able to see all the ways we are in a better place then other times and for that we are grateful. Maddy has been doing well overall. The only issue is that we think her knee issues may be worsening quicker then we had hoped. She has fallen multiple times and it appears that her knee may be giving out on her. We will reassess once we get through the holiday season. We saw our GI yesterday and had a really productive appt for both kids. We have some medications we may try with Alex as we are hoping we can get his pain to a lower, more tolerable level. We are also going to do a dexa scan to check bone density. For my Maddy Moo, we are adjusting one medication and potentially adding another for help with her reflux and constipation. We also need to do some further testing on her liver to assess the Fatty Liver Disease that was discovered this summer.

As we go into the next week, my prayer is that you can look around and see all the blessings in your life. That create memories with family and friends and that you begin  next year full of hope for all of the adventures to come. I know we are!

Thank you for being a part of our story and reminding us daily of the love that surrounds us.

Ali