Jax is back..

Mr. Independent has arrived. :) Jackson is ready to exert some control over his environment (who can blame him?). He wants to do EVERYTHING on his own including cutting his pancakes, pushing his wheelchair (oxymoron?), getting in/out bed, taking stethoscope from nurses to do his exam, etc.. It is great to see! That's my boy.  

The rehab docs have been very vigilent in assessing him everyday and thinking up new ideas for his gait pattern and maintaining righty's range of motion. He got fitted for a night splint that will allow us to adjust the intensity of his right leg stretch. They are also discussing the possbility of more botox on his right side.  I hope this week offers even more progress than last week. Righty arm continues to amaze us with all the movement and even

I always tell people Jackson does better speech wise around people he is familiar with. My theory is proving to be true. He will talk around the family way more than he wants to talk for the speech therapist here that he just met. I may need to record him so they know what he can really say.

You may wonder what we do to stay busy in the hospital..here's a taste :)

http://youtu.be/ubXs5Icd39o

Haha..

Again, we appreciate all the support and love from Team Jax!

Tina

It's all about motivation..

Jackson's therapist's are quickly learning that if they want him to perform a task..he has got to be motivated to do so! You say, Jax go get the bear, he looks at you like "you talking to me?" You say, Jax get the blue ball to throw at dad..you see him MOVE. Jax lets go talk to the nurses, he bolts out the door. :) He is really giving his speech therapist a run for her money by playing his silly talking games, if she asks him to say a word (especially one he knew prior to surgery) he will say it to her in a whisper or a high pitched voice. Maybe the better he gets to know her the more open he will become. All 3 therapist's treated him together for his afternoon session (ot, pt, st) and that seemed to work well. He's much more talkative when he is in the midst of playing.

Everytime we go by the nurses station he has to stop and say hello. They all get a kick out of him.

Dad quizzed him about some of his letters/sounds this evening and he did the same thing but in an answering growling voice. :) Silly boy..I guess he figures if he is going to do anything speech oriented it will be with an avoidance tactic.

We attempted a wheel around the hospital but Jax decided he didn't want to be the rider, he wanted to be the driver..

The Rehab team had a conference today and estimated Jackson's stay for another 2 weeks. This could change on way or the other depending on rehab progress (currently going great) and neuro side of things. We will talk to neuro tomorrow and see what their time frame is. Jax still has swelling on left side and we haven't done ct. I'm assuming if the swelling subsides some we won't have to do one.

Good night Team Jax,
Tina  

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

Pleading or prayer? or both?

This roller coaster ride is hard..one day we are on this great path, traveling in the right direction of healing and recovery (rockstar day at therapy yesterday)..the next day or should I say within minutes we (or I) are in a panic, seeing the path take a sharp turn. They raised the drain again this am and within minutes Jax was not in good shape; projectile vommitting and just not acting like himself. They have lowered it back and he seems better but tired. Waiting for doc to come in with plan. Tentative discussion is that they will pull the drain altogether and see how Jax reacts or keep it in a little longer but go slower with the increased pressure level. Not sure..  

Of all days for this to happen, it is Brendan's b-day. Happy Birthday Sweetie! I hope you have a good day and know how much you are loved. I can't believe you are 12 yrs old. What a great young man you are. Hopefully after the doc comes in, things will settle and we can take Brendan for a birthday dinner and spend some much needed time with him.

I find myself pleading with God for Jax to be okay and not have another thing on his plate..but then remind myself that God is with us no matter what the day holds and will keep Jax wrapped in His arms.  Please join me in prayer today for Jackson to feel better and strength for the rest of us.

Tina

Be thankful, give praise

http://www.youtube.com/watch?v=a5HRFY1S0aI - if you aren't able to click on the link just copy and paste to your web address bar

Good evening Team Jax! Today served as a day to be very thankful for. Jackson had a wonderful day. He ate 3 small meals including turkey & sweet potatoes. :) We got him in his wheelchair 2 x's for an hour 1/2 at a time. He didn't want to go back to his room and kept saying "Go Go." At one point he even asked if he could get out of his chair! I really hope this increase in energy continues.

He is so funny, he likes to cruise down the halls with his music. I think he is the only little guy swaying and singing to Boom Boom Pow with a brain drain and IV machine. ;)

Tomorrow the neurosurgeon will start raising the pressure on his drain to see how he tolerates it. This is the 1st step towards getting rid of the drain. Please pray this goes well! If your body can't circulate the csf (cerebral spinal fluid) and pressure increases it can cause you to vommitt, feel dizzy, nausea, fatigue, etc.

What a true inspiration. Thank you God for blessing my life with such a fighter, someone who doesn't see his disabilities as inabilities and brings joy to all he comes in contact with.

Tina

1 step forward 2 steps pause

I am going to make this a quick update because I'm exhausted and my first typed post got erased (ugh). Yesterday was an awesome day for Jax that included a kick butt therapy session, good eating and energy. Unfortunately today not so much, started the day at 5am with vommitting and continued very zoned till mid-afternoon. He also developed what seemed to be a left tremor..after relieving some consipation, eating a little and being checked by the doc it seemed to get better. We took him outside to enjoy the beautiful weather and watch Daddy and Brother play football. He liked that, hopefully we can do the same tomorrow.

Brendan has been up here since Tuesday and has been so patient and helpful, thanks big brother! Jax loves having him closeby.

I will update more along with some videos soon.

Wishing you all a very Happy Thanksgiving! We will celebrate tomorrow by thanking God for his love and grace and for all the kind and compassionate people we are surrounded by.

With unfortunate cirlces under my eyes (anyone have miracle bag/wrinkle cream?)   :)
Tina

Day 3, a little rougher

We started out the gates with gusto and ended with sleepiness. Jax had a great, busy morning; talking, riding around the flr in his wheelchair, took the first "real" bath including washing his hair and even got some OT and PT in...whew. But as the day wore on so did Jax. He did great for the OT and PT, they were very encouraged by his sitting, moving arms/legs with strength and even some brief standing while holding under his arms. She was surprised to see that when she asked if he was ready to lay back down he started taking the steps necessary to move forward & backward..that ah way Jax! The therapy may of just been enough to fatigue him for majority of afternoon/evening. He wasn't communicating nearly as much and appettite was down. When he turns down mac & cheese you know he isn't feeling up to par. I need to keep in mind that he has undergone a MAJOR surgery and needs plenty of rest. He is still on IV fluids so at least that is giving him fluids that he isn't getting otherwise.

I told our night nurse that if she sees an IV machine come flying out our room in the middle of the night she knows the beeping got to me. (haha) If it is driving me crazy I can only imagine how poor Jax feels.  

Praying for patience, strength and endurance for Jackson. He is so beautiful, strong and AWESOME!
"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."
Joshua 1:9

Team Jax is greatly appreciated! Keep the positive thoughts and prayers coming..please.
Tina