Recovery, not always easy..

I hope everyone had a very Merry Christmas and preparing for a Happy New Year!

The winter colds have come upon us so we have stayed homebound for majority of the week. Everyone seems to be on the mend but Jax is more fatigued than usual and eyelids look slightly swollen. We took a trip to the pediatrician's today, he said the left ear is red & eyes watery from cold/sinus, which could explain the fatigue but we should still discuss w/ neuro. Unfortunately, right now any little irritation can really affect him. Doc prescribed antiobiotics for the ear. Made a call to Children's and they have set tentative scans for Tues. just in case things don't improve. We will see how he feels over the weekend. I'm not exactly sure why he isn't opening his eyes fully, swelling from surgery?  I may need to call eye doc as well. Of course first thought is neuro related but I don't want to miss something else that could be going on. Praying this resolves sooner than later!

Jax is scheduled to start school next week, I really hope he is still able to. He will be upset if he has to wait any longer. He also resumes his therapy schedule next week which he definitely benefits from.

We go to get the new afo's/night splints tomorrow at Children's. Jax will be excited to see his new Bronco designed boots. 

Brendan is enjoying winter break and gets to go bird hunting with dad & cousins tomorrow. He is really excited and hopes to shoot a coyote. Oh great!

Tina

We are home..

Home and slowly getting settled. We got home last Tues. but it feels like yesterday..between getting caught up on mail, laundry, follow-up appt's and therapy, we are enjoying just all being under one roof. The pure feeling of happiness, just by being home and eating breakfast together, is great. The hardest part has been getting back into the hussel and bussel that life is; sometimes to our dismay. Can't we all just slow down and smell the flowers ;).  I say that as I let my road rage set in and hurry it along in the crowded grocery store.

Jax is doing great adjusting to his rehab team and crazy schedule. They are picking up right where they left off with a few minor adjustments. He is walking really good around the house and other familiar surroundings. His balance is going to require some changes due to the left lift being on and then when the left afo comes it will be a new slew of changes. He'll do great!

We were able to stop in Jackson's school to say hello..I don't know who was more excited, Jax, his classmates or his teachers. He was high fiving all his friends and they told him they loved him, it was so sweet. He told me "bye mom", "me go with Cheryl" - his para who we absolutely adore.

Thanks to Mimmy for making us our belated Thanksgiving day dinner. Also, to Rhonda for the spectacular ham and fixings. It was all delicious!

Jax has joined the other Tebow fans in the Tebow'er pose..I'll post pic soon.

Thanks again for all the positive thoughts, prayers and support!

Kicking and Screaming..

You know it is time to go home when the nurses have to check in on you for being too loud. ;) Last night we had some friends stop by (thanks for dinner Mandy) and Jax was hamming it up. He had a surge of energy that lasted till about 10:30pm!

Here is a video from Thurs. in PT with one of his fav in-patient therapist's, Char. She treated him when we were here 4 yrs ago..she's great! Righty leg was kicking so well and then got interrupted by hearing music.. Jax gets dance fever when he hears a good beat. The blue tape on the left shoe is good ol' duct tape, they added a lift to his shoe for a variety of reasons but the main one being a height difference w/ an afo on his right leg. It is taking some getting used to but seems to improve his weight shift from left to right.

http://youtu.be/XkS2bzVmBhQ

We almost got away with a virus free stay but a yucky mouth virus got Jax this week, he had sores on his lips that were super painful. It limited his eating and drinking..no complaining once he got numbing cream & the doc prescribed all day milkshakes. They seem to be a little better today.

 2 days and we are homebound! Jax has been fitted for new afo's, a night splint and more botox than one could ask for. We will see the neurosurgeon on Monday, Dr. Handler, who by the way is a really nice guy and a brilliant surgeon...the epileptologist and rehab docs..a lot of follow-up appt's in Jan. plus an eeg. We haven't seen any seizure activity (thank the Lord!!) but an eeg will confirm if any electrical activity.   

There are still a few staff members here from when we were here 4 yrs ago and one of the gals told us this week that she was shocked at how good Jax was doing..she said to be completely honest she didn't expect him to be talking or walking. We are reminded how blessed we are to have a strong, determined little boy who was given a special spirit by Him.

Please say a prayer for all the children here, especially during the Christmas holiday. It does something special for the soul being around all the hard working, amazing spirits. Choose today as a day to be thankful for your health and the great lengths that medical technology has brought to us.

This is the verse that came up on my daily bible app and I thought I would share..
1 Corinthians 13:7-8
"Love bears all things, believes all things, hopes all things, endures all things. Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away."

Tina

Game still-on..

Sorry for the lack of updates, the last few days have been super busy with OT, PT, ST and a variety of therapy oriented groups. Jackson's walking continues to improve with more ball playing than you can imagine. He is either rolling, throwing, catching or kicking a ball in therapy..it is so cool that the therapist incorporate his love of sports with each session, I know he appreciates it! He got a visit tonight by a womans professional soccer player and was totally smitten. :)

We finalized our remaining stay today - field trip tomorrow to Children's Museum (our first outing in 2 1/2 wks, YAY) - botox for right side & lots of it on Fri. morning, stitches from drain removed same time since Jax will be on happy gas - discharge on Tuesday the 13th, yikes. We discussed discharging with the rehab team and they feel that since Jax is doing so well and we have a great outpatient team that it would be okay. Our outpatient PT is working hard to get all his therapy scheduled for 2-3 x's a week but with the holiday fast approaching it is challenging. Good thing we still have a basement full of therapy goods. :) 

Another gigantic THANK YOU to our family and friends. They have made sure we don't go hungry or nutty :)! They have sacrificed enormous amounts of time to visit us, energy to cook for us and words of encouragement to keep us going strong...what a fantastic team!

With love,
Tina

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

Day 2 post surgery

Jax is resting comfortably after a good day. He has a "brain drain" which alleviates any pressure from the surgery, the doc said this could be in for 5-7 days. They increased his pain meds last night which seems to be a nice relief for him. His sweet little face started swelling more today especially around the left eye and cheek. Doc said this is to be expected and will more than likely get worse before it gets better. Jax's face is itchy today so that has been bothersome for him. He will get a burst of energy but then require a decent amount of rest. I was able to hold him today while he napped, what a wonderful feeling!

We were able to get him in a wheelchair for a few minutes at a time. He enjoyed getting out of the room and checking out the rest of the 6th flr.

He also drew on a chalkboard, read books and played a TON of football. :) Tomorrow he will start getting evaluated by PT, OT and Speech. I tell you what he is moving Bob a.k.a righty a lot!!

Lucky Dad was able to get a few kisses!

THANK YOU so much to our friends and family who have been so incredible. The wonderful meals to keep our energy level up, great laughs, support and all the love. You guys are awesome!



I'm going to try and catch some zzz's. Will update more tomorrow.
Tina

Warrior!!

"Praise be to the Lord, to God our Savior, who daily bears our burdens"

Boy were we bearing our burdens to him yesterday and "HE HEARD AND DELIVERED"!  We cannot tell you the peace and excitement we felt last night.   Mom and I were ready to scream from the rooftop.  Let me back up a little to explain.
Yesterday was the the  LLLOOONNNGGEEEESSSTTT day of our lives.  The surgery got started later than scheduled, which made for an extra long wait.  Family Team Jax set up camp in the waiting room and began our trek.  Thank God for our family!
The surgery staff did great updating Tina every hour, which was especially nice considering the lengthy surgery.    By the way, she is one of the strongest mommies I know!  Finally a little after 6:00 the surgeon came out to let us know that everything had gone smoothly with no surprises.  Boy talk about tears of joy and praise.  It's an amazing feeling to be in the presence of such a brilliant man.  It was like a ton of bricks lifted and we thanked God immediately with a family huddle!  Eric and Tina were then allowed to go back to see their precious warrior.  After he was moved from post-op to the ICU we all had the quick chance to see him.  HE IS AMAZING!  He was quite out of it, but still able to shake his head no, do the hand movements to one of his preschool songs, and put daddies head in a head lock :)  Yep you heard me correctly...only our wrestler Jax would want to wrestle after a major brain surgery.  Before the night was done Jax told daddy he loved him, said hi and asked for more water on his sponge.  HALLELUJAH!!
Today as also been a wonderful day thus far.  He is very tired though because it's very hard to sleep in the ICU, lots of noises, beeps and buzzes.  When the surgeon came in he said, "When it goes great, it goes great".  Jackson still has a long road ahead of him, but with the strength and determination and love this little boy has, he will prevail!  Hopefully by nights end we will be up on the rehab floor.
I can't thank you guys enough for all the words of the support we have felt the last 24 hours.   We couldn't do this without all of you!  Please continue to pray for Jackson's recovery.  
I've added some pics and a video.

With much love and appreciaion,
Aunt Leelee

Praise God

Praise God!!  Dr. Handler (neurosurgeon) just came out and said everything went smooth, no surprises!  Tina and Eric should be able to go back in the next 20 minutes or so!  Will post more later!  All of our phones have been blowing up today...love all of you!

Update

Hi everyone.  The doctors got a late start, so the surgery didn't start until noon or so.  They have called from the operating room saying everything is stable! Hopefully in the next couple hours they will be done.  Please keep praying for us, as this wait is VERY hard.

Aunt Leelee

"When a believing person prays, great things happen." James 5:16

The surprises and miracles of the human brain.. I just heard this statement tonight on a tv special and it served as a wonderful reminder for me just how true it is, especially with 4 days to go till the surgery. The pure sound of Jackson's voice is music to my ears. Even Brendan comments all the time about how good Jax is talking and how it makes him smile and laugh, that I also love. I pray that we get to hear that sweet voice after surgery. (He has even started to say "I love you" automatically w/ no prompts!) I pray we see that smile so bright it reminds me of the sun. I pray the little ham hock legs run down the hall. I pray his right leg has stored strength to push through this obstacle. I pray Jax asks to play football 20 times in one day. I pray he has NO trouble with his breathing, no infection, no complications.. I pray the medical staff is on their A game, rested, feeling positive and have all the medical knowledge plus some. So many fears and anxiety BUT I know that God has Jackson wrapped in his arms and has blessed our amazing son with so much fight and determination he can and will do anything he sets his mind to.

I must say good night with a cute Jax story.. His para told me a cute story today about Mr. Ladies Man . Jax was on the playground when a little gal came up to him and said "Hi"..Jax looked at her and said "Hey Baby" :)  Cheryl said she couldn't help but chuckle and tell the other teachers about this little incident. What can I say, he knows how to talk to the ladies.

FYI..you can receive an email each time I post if you submit your email to the Follow By Email box on the top left side of the blog. After you enter email and click submit, it will send a confirmation link to your email that you have to click on to confirm and it will be ready.

Superstar

Busy but great day for Jackson! His teacher put a note in his folder that he read 3 of his sight words with no help..YAY JAX. He has also been blending more sounds with his speech and pre-reading skills. 
He also had PT with Mrs. Liz this afternoon and was showing off his skills..here is a video for those who haven't seen him recently.

http://www.youtube.com/watch?v=YGQ-sI3v3Tc

We saw the rehab doc yesterday for a follow-up/pre-surgical appt. Needless to say she was very pleased with his progress. We discussed the surgery and she is hopeful that, with intense therapy and time, Jax can get back to where he is now. I pray that is the case. He has worked SO HARD to get where he is today. What a true miracle.  

  

Blogging??

I was hoping there was a way for Team Jax to receive an email notification when I post on the blog but I haven't found a way yet. It only allows me to put in 10 emails addresses for notification to be sent to. If anyone knows of a different way to do this please let me know. I may need to update carepage with message to visit blog??
Jax had a great weekend. Mimmy and I took him to the movies today. His favorite part is the popcorn and candy. He stayed awake for the entire movie too!  My sisters and I took him shopping. Lisa learned quickly that Jax now refuses to get in the cart; he likes to be the shopper..in every section we went to Jax found something that needed to go in the cart and if he wasn't picking out a new blouse for Baylee than he was running in-between the clothes racks...he's so fun!
We have more appt's this week with our neuro in the Springs and his rehab doc at Children's. Definitely getting anxious for his surgery and ready for the 18th to get here. We have the absolute best support team. So many people have offered to visit, bring meals, hang out with Brendan, pray, etc.. THANK YOU! I'm fervently praying everyday and night. Today I had more of a calming feeling when I thought about the surgery..God is hearing my prayers and letting me know to calm down, he is GOD. Learning to give him all my worries has been work in progress and I'm learning that I don't have to have control over everything; even the things I think I do!
"People make plans in their minds, but only the LORD can make them come true. Depend on the LORD in whatever you do, and your plans will succeed."
Proverbs 16:1,3

I have found a lot of research online relating to the surgery..I will post some of the info soon.