Prayers and faith

I'm not sure what to say tonight.. this week has been so rough, emotionally for us and physically for Jax.

Last Friday we went in for what was planned to be a minor, out-patient surgery to repair his left eardrum and adnoids. The doc found a cyst behind the eardrum that was very hard to get to and required a more invasive surgery than originally planned. Since he had to remove some of the middle ear bones to get to the cyst, those bones can't be put back into place to do the job properly. So Mr. Jax has a prosthetic Titanium incus ear bone!.. only Jax, only Jax..this is only the 3rd time the doc has encountered this situation, well of course, Jax has to add a little flare to the situation.  They also had to cut the small flap of skin right in front of your ear, in order to get to the cyst. This took the time Jax was in surgery to almost 4 hrs.

Soooo.. we come home same day as surgery, granted it took Jax a long time (approx. 3 hours) to come out of the anesthesia. Jax has been resting, drinking fluids and finding small bursts of energy. The sad part is Jax has had 2 very uncharacteristic type seizures (from those prior to Nov.), I can't describe them right now, still so raw. This is also followed by "hooded, swollen" eyelids. Needless to say, we have spoken with each of his doctor's, got an MRI scan, ER visit Sat., increased meds and praying like crazy. I am scared..

The doctor's are telling us that the ear surgery could of traumatized/stressed Jackson's body and he needs healing time. They have also mentioned that anytime a patient with epilepsy undergoes a surgery it lowers your seizure threashold. They are hoping (and I'm praying) that this is the explanation for these issues and once he is feeling better things will even out. Who would of thought, the one surgery that was supposed to be minor, turns into the one w/ the slowest healing time and largest complications??

Team Jax Prayer Warriors - please pray that Jackson heals quickly from the surgery and the complications are resolved SOON! He is trying so hard to find the little bits of energy he has and make the most of them. I wish he could tell me exactly what he is feeling or if there is any pain. I want my spunky little warrior 100%.

I will update again this week. If things aren't better by end of the week, we will go back to Children's for MRI and EEG early next week.

Thank you for your support!
Tina

Summertime fun!

We started out the summer just right with a vacation to Mimmy and Papa's in Arizona! We were absolutely amazed at how different Jax responded to things than in years past. Jackson wanted to participate in ALL activities and was not afraid to try anything! He rode the tube and did not want to get off! He rode the jet ski with Daddy, granted he wanted to drive so Eric got a little dizzy from going in circles. :) He also wanted to be in the water, as chilly as it was at times. I was so happy for him that he had such a wonderful experience and showed so much courage.. that's our boy!.. Brendan also had a monumental experience getting up on the water skies for the 1st time - good job bud!  Here are a few photos:

 I love fishing with my dad!

YAY BUBBA!!

We returned from vacation and haven't stopping going since. Brendan has been in basketball camp and Jax is receiving his summer therapies (ot, pt, speech) plus school tutoring and hippotherapy. He hasn't done hippotherapy (horse riding with a therapist) in quite some time due to his allergies and boy was he excited to start this week. We timed the allergy med just right and he had a wonderful time. I'm so glad he is able to attempt this again and hopefully each session the allergies will stay at bay.

Jax had an appt. with the rehab doc this week & all went great! He got 5 shots of Botox and in Jax fashion recovered like a champ, it was done in the office but their was no numbing cream. :( Needless to say, he got a chocolate milkshake afterwards! The long term goal with the Botox is that his muscles will continue to gain strength so we can space each injection out further and further. The doc made note that his walking looked very stable and to continue encouraging as much natural wallking as possible..Jax wouldn't have it any other way. :) He stressed how important this is for his hip and spine alignment.

As Jackson's walking increases, not only strength wise, but also endurance, I catch many more eyes looking our way. I'd be lieing if I said at one time it didn't make me angry or confused, but now I find myself saying they are starring because "They wish they knew him." They wish they knew who the sweet child with the bright smile is, they wish they knew what a tough spirit God blessed him with, they wish they knew that every word he speaks is a gift from above..I could go on and on.

Not a single day goes by that I don't thank God for this amazing, resilient, terrific miracle!

In the last week or two I have had so many people ask us how Jax is doing, those who we haven't spoken with recently, some that we have..either way, to know that Jax is in your thoughts and prayers, is so uplifting and heartwarming. Thank you!

Tina

Happy 7th Birthday Jax!

Sweet boy on his 7th Birthday! His shirt says "Built To Survive The Unusual"..that shirt was made with Jackson in mind! His new favortie color is yellow so he insisted on wearing this shirt today.  

He had a great day full of cupcake celebrations at therapy (thanks Sharon) & school. IHOP for dinner, his favorite, and a beautiful bday song from his best bud Ty!

Thank you to all who sent messages to him today. :) He loved them!

I have to post a wonderful birthday message, one that just melted my heart, from one of Jackson's special friends -

A very amazing, spectacular, stupendous, heroic, metropolis, unbelievable, splendid, remarkable, astounding, humbling and awe-inspiring BIRTHDAY to one of my very favorite people!!!!!! Jax is the man!!!!! ;-)

Follow-up's and more

Summer can't come soon enough! The boys are getting summeritis and have already started planning our days. I have to admit I am also ready.

Sorry for not posting sooner regarding the EEG results, all went well and Dr. L said we could continue to ween one of the seizure meds! He said we will never know what type of side effects Jax is having from a specific med until we take him off it completely. He will still be on 2 other's which makes us feel safe during this process. Dr. L asked Jackson for a hug before he left and said "You are pretty amazing." Ahhh, the doc knows what a super star patient he has. :)

Jax had a follow-up appt. and MRI with Dr. Handler this week. He said the MRI results showed less fluid than the previous one and showed some of the tissue that was effected by the high pressure has healed. Definitely great news! He made sure to remind me to get a copy of the most recent mri to have on hand when we go on vacation. Per Dr. H "If someone looks at his scans and doesn't know the story, they will have a heart attack." Even Jackson's scans can send one into heart failure, maybe we should just put one in his back pocket for safe keeping. :)

Sweet boy will be 7 yrs old on Thursday! My how time flies! Who would of known that the little chubby cheek baby would have such a journey in his path.. filled with scary moments, uncertainty, tears, smiles and sooooooo much strength. Jackson, you are a gift from God my precious boy.  I learn more from you everyday! Happy early Birthday pumpkin!

As most of you know, we have been involved with the Pikes Peak Challenge for a few years now. It is a hike up 14, 115 ft. Pikes Peak and a large fundraiser for The Brain Injury Alliance of Colorado (where I work part-time.) A non-profit dedicated to improving the lives of brain injury survivors.

We will once again have a Team Jax hiking, if anyone is interested please go to www.pikespeakchallenge.com for more information or email me @ tinas.quest@yahoo.com. If you are not able to hike, their are many volunteer opportunities. We are making it a family affair this year. :) Brendan was the first registered hiker, Lisa is Volunteer Coordinator & Cheryl is in charge of radio communication (see I really wasn't joking!) You can also donate to Brendan on the website! Thank you all for your past and present support! We greatly appreciate it!

Tina

Sneezing, stuffy nose..yet still a ROCKSTAR!

Cold season has hit our house in full force. Both kids have congestion, sneezing, coughing, etc. Jax has a right ear infection to go along with it! I have a feeling that the next time I pull the "burger snorter" out, Jax is going to clock me. After being on an antiobiotic for a few days, I took him to school for the morning..he missed two days last week and was ready to see his peeps. When I picked him up his vision teacher and para were saying how great he did.. he already scored 100% on one of his IEP goals FOR next year. Way to go Jax! Amazing little boy just pushes through, even with his cold. (Farris take note)

Courtesy of Aunt Ee and Uncle Danny, the boys got a chicken (to be stored, fed and plucked) at their house. :)  Jackson named his "chicken butt".. haha! After scoping it out on his lap, Jax attempted to hand it to Lisa by its head, good thing "chicken butt" is tough too.

Just when we thought we were in the clear, we find out last week that another surgery is in Jackson's future. Bummer..  He has a perforation in his left ear drum (from ear tubes) that needs to be fixed. If left unattended, it can and will affect his hearing. It is a minor surgery but still a surgery..3 in just 7 months! Wow..  we meet with the ENT this week to discuss further. Since Jackson's shunt is located on the left side, with the tube running behind his ear, we will need to make sure all precautions are taken so that it isn't disturbed!

Wed. he has another EEG and follow-up appt. with Dr. L. Hoping and praying he is feeling better and the results come back seizure free!!

Thank you Lord for our blessings.

Tina

  

All about the boys..

Jackson is all about jumping these days..I say he is jumping for joy. :) Here is a quick video of him at OT with Miss Linnea. He was so excited when she brought out the trampoline..guess we will be buying one for summer! Brendan is a gymnast at heart so should get plenty of use out of it.

http://youtu.be/OlC-l3vBV5I

A marketing rep & photographer from Memorial came to one of Jackson's PT sessions to interview us for a story they are doing on Jax! It will be published in the Pikes Peak Living magazine sometime in July. I'm excited that they chose Jax to do a story on (the photographer had an easy job that day, little ham), he is such an example of hard work and determination for others going through a similar situation. But at the same time I'm glad they are highlighting Memorial Peds Rehab, they are absolutely fantastic and have made a huge difference in our lives!! They continue to help us on a daily basis down our path of rehabilitation, both physically and emotionally. THANK YOU to all of them (they know who they are) !

So proud of Brendan! He made National Junior Honor Society at his school! Good job sweetie, keep up the hard work! Between his basketball schedule and school work, he is staying busy.

We saw the rehab doctor today and he was so pleased with Jackson's walking. He wants us to continue working on the weight shift to the right side but said for being 4 months post surgery he is doing awesome! Way to go little man.. Jax got the clearance to start swim therapy again. The rehab doc said it is a great way for his body to learn different movements. He also mentioned martial arts, ummm not sure I'm quite ready for that, yet!  We talked about his expressive language, which his speech therapist is pushing really hard right now, in conjunction with articulation. One of the most difficult tasks for tbi survivors can be recall of words, facts, objects, etc. You can tell Jax knows the word he wants to say but has a hard time with the motor planning of it and needs ample time..no problem buddy, we have time! He is making great strides in speech & sounds!

To end in a cute Jax story.. Aunt Lisa has so kindly let us take her dog, Ellie, this week and many of you know Jax is in love with her.  He always wants to be with her and has finally found a way for Ellie to follow him not the other way around.. he just dangles his sticky, syrup drowned waffle in front of her and walks around the house with it. :) He thought is was great this morning that Ellie would go wherever he went, waffle in hand!

Enjoy spring! I'm so happy to have the kids home for spring break.

Tina  

What a character..

Jackson is really starting to blossom into quite the character! His amazing personality is shining through more and more. We can't help but laugh and smile with him everyday, how blessed we are! A few cute Jax stories..

While looking around Kohls, Jax fell in love with a stuffed animal sheep, after many attempts at trying to change his mind, he finally got Eric to buy it. The man in front of us at the cashiers was taking longer than Jax thought he should be, next thing you know Eric and I hear "hurry up man" and both of us look at Jax and start laughing. I'm sure those around us thought we were rude for laughing but Jax said it so clearly and appropriately we were so happy! He wanted his sheep!! ... Due to the hectic schedule Jax has had lately, I thought he was ready for a break so I went to his school early on Wed. to get him. He was in his classroom preparing for rest time and was very adamant that he stay at school, "me school lay down" .."bye mom" and said it so loud it made his classmates giggle... I've discovered he is ready for summer, he tried on some swimming trunks this weekend and would not take them off to leave the store!..WELL, if you ever see a young boy wearing trunks in winter at the store & tag still is on, you now know why. :)  Fun explaining this to the store.

I attended a brain injury conference on Friday and was able to hear our Mr. Brilliant neurosurgeon Dr. Grabb discuss the impact TBI has on survivors. It was both informational and emotional. It brings me back to saying, "I'm so grateful and blessed to hold my beautiful boy everyday!"  Whatever he recovers, whatever he doesn't, it doesn't matter. I just want him to feel unconditional love every day of his life!  After hearing all the scientific information, I can't help but be astonished with how great Jackson is doing and how much fight is in him. 

Another important topic brought up at the conference wasn't a scientific one or a medical statistic, it was purely that those who suffer from a TBI have a much better recovery IF they are surrounded by a supportive and healthy home life. I can't express how much we owe to our families for their encouragement, love, acceptance and understanding. They are the GREATEST and we appreciate them so much! They are the framework of our journey and without them we would not be standing.

The dentist asked Jax last week, after hearing about his hemispherectomy, if anyone has told him that he is of his right mind. :) He sure is.

Swallow study results showed that Jax had some aspiration when drinking from an open cup. He did great with thin liquids from a straw. So, if we give him open cup it will have to be with thickened liquids. No problem, we definitely want to avoid all aspiration risks.

Thanking God everyday for 4 months seizure free!

Tina