5 years ago… and surgery update

Aw!!!!!!! My sweet little guy’s 2nd Birthday party and fundraiser. Thank you to everyone who follows our journey and supports Isaac in this fight!

With Isaac’s birthday falling the day after Thanksgiving this year, we aren’t planning a huge party, but instead I think we will plan a bash to celebrate his 7th year, month and day. So watch for a celebration beginning of June! And if you have little ways to commemorate his actual 7th Birthday in two weeks, please share!!!! I am absolutely over the moon that our miracle child keeps writing his own story and I’m a little sad not to have a big party. Plus, Isaac is having surgery on December 5th to remove the plates in his hips and lengthen his adductors, sooo there is that…

We just finished a round of updates with the doctors. Pleased to share that most doctors are happy with his health and that his brain MRI shows no further deterioration compared to 2 years ago. We know that cognitively he appears to be making some gains. It is amazing to see how aware he can be in moments of time. We also saw the spine doctor and had no further increase in his scoliosis compared to 3 months ago. This is important because rod placement has become a possible major surgery in Isaac’s future that we wish to avoid. We credit getting back to see Margie, Isaac’s Anat Baniel therapist, more massage and stretching and wearing a brace as tolerated with this win. The following films compare Isaac’s scoliosis without and with the brace as well the kyphosis without and with. The assistance with the kyphosis is significant!

Halloween 2017

Where have we been? Months and months without a post? My apologies! Please enjoy Isaac’s Halloween fun!

Isaac helped make his truck. Cardboard, duct tape, spray paint, construction paper, aluminum foil. Amazing what you can make at home!love visiting Dr. Steve and getting checked before a busy evening!Visiting our local Fire Department. They were busy so no picture with a big truck today.