THANK YOU

Before posting on Jackson's day, I need to say a lot of Thank You's to our wonderful support team. We have the most supportive, encouraging and joyous family and friends a family could ask for. It is definitely times like this that require everyone to pull together and be a team. The laughter (thanks Lisa & Eric), smiles and kindness that you all bring to our situation is wonderful. Thanks to Mimmy and Lisa for pulling double duty last night so Eric and I could spend some time with Brendan on his 12th birthday. Thanks to Jen, Vern, Melissa and kids for getting lunch. Thank you to Cheryl and Kendall for running errands  and spending a sunny day outside with us. Papa Walt for all his fun, therapy oriented games he plays with Jax. Thank you to all those who have visited over the weekend and everyone who has sent up yummy food! I can't express just how much it means to us and how appreciative we are.

Thank you to the marvelous team of doctors and nurses at Children's Hospital. They have taken exceptional care of our sweet boy. He has also brought lots of smiles to them too. :)

Well..this am was great. Jax was up at his usual 5am asking for food and smiling. His witty personality springs through in the am and he is a riot. dundundun...his drain started leaking at the lower pressure so the docs agreed it was time for it to get pulled altogether. Their thought is that due to all his movement the stitches came loose and skin around it stretched, allowing for csf to leak. After it was pulled and 2 sm stitches applied, Eric starts seeing the top of his head spring another leak..doc came back in and put 2 more heavy duty stitches in. It was quite the experience for doc Eric. This seems to be working right now. dundundun.. this evening we notice the left side of his head is more swollen (ugh), doc comes in and said some swelling after pulling the drain is typical but we will have to watch it very closely. She said it can be uncomfortable so Jax got some heavier meds to keep him comfortable. They tentatively have a CT scan scheduled for tomorrow. 

In between all this craziness, Jax was able to go to therapy and was very impressive. He took steps on his own and stood up with no assistance ! The pt discussed casting his legs this week in an effort to maintain the range of motion he currently has. You can only imagine how happy this will make him. ;) Righty also did fabulous, moving w/o as much prompting, range of motion superb and keeping those fingers loose. That may change over time but we will do what we can to preserve the looseness.

Trying to refrain from stalking his bed tonight but no promises..he's lucky I don't jump in next to him and stare at his head the whole night.

Praying Jackson's "plumbing" system can re-organize and do its job. Whatever way it turns out, praying for continued healing/recovery and health.

With love and appreciation,
Tina