Blessed

ROLLER KING! (darn flash gave Jax silly eyes)

Jackson is the official Roller Rink King! :) As soon as we walked in, Jax says "me skate.." I was not wild about this idea but after some cohersing from Aunt Lisa we got the skates on. He did not want to take them off and kept telling Danny, "skate rink." I'm so glad he got out there and had a blast! Thanks EE and D for taking one for the team and being the skate guards.

Jax is still having the ptosis and seizure break throughs. Both have gotten somewhat better in their own ways. The ptosis occurrs more in the morning and when Jax is really wiped. The seizures have changed characteristically but are still more involved than prior. We have several follow-up's this month to see if we should be doing anything more including an appt. with a neuro-muscular doctor. The seizure meds were increased again..the whole med situation requires a lot of patience to find the correct dosage and type. Breath....

A lot going on this week..Jax starts school (thank you to the best para ever for being there for him) and his 5 year anniversary is on Tuesday. 5 years, wow..So many emotions surface during this time of the year, not only for me but Lisa as well. We will both count our blessings as the day approaches and thank our Lord for the soul and fighting spirit he blessed Jackson with. This sweet child carries a sense of peace with him wherever he goes. I have been more intuned and observant to this recently and it brings such happiness to my heart and soul. It really is amazing being around him, even on your worst day, your most angry times, anxiety or fearful days...he heals it. I can honestly say, that is nothing short of a miracle. I truly hope he serves as a reminder to all of us that life is a gift, one to be cherished and thankful for. There is much beyond our current struggles but there is always time to be faithful in God and know we are loved.

Jackson was having a rough morning last week, didn't want to take his meds, get dressed, etc..just putting up a real good fight.  Brendan came to him, noticing I was getting a little frustrated and calmly got Jax to do all the tasks at hand. The way they are able to relate to one another is so sweet. They have a true bond that only they can give to one another. I love you guys!

I do pray that the newest struggles for Jackson will heal. I pray our family finds some rest. I pray other parents of a special needs child find strength and peace. It is a path unlike any other, but one that forces you to grow closer to God, family and your inner self.

Thank you to our wonderful family and friends for helping us through the last 5 years. You continue to touch our lives with your support and encouragement! Some days when my anxiety and fear are spilling out, I seem to get a boost from those nearest and dearest, thank you!

With love,

Tina

"The Place"

Well, we went back to "the place", a.k.a Children's Hospital, on Thurs. the 5th to be admitted since the eye swelling (which is called ptosis), was not improving and Jax was still continuing to have seizures. An MRI shunt series was performed, 24 hr EEG and blood work sent to the lab. In the end, we got good and bad news..good news - all the tests came back good, shunt working properly, no seizure activity noted on eeg (excellent news) and blood work ok (1 test pending that takes 2 wks to get the results)... bad news, still not 100% positive as to why these symptoms have presented themselves.....Is it from the 4 hr ear surgery? The Titanium Incus bone? The anesthesia and the way it is metabolized? Still some unknowns..

We had a follow-up with our neuro yesterday and he was very optimistic that we will get the seizure activity under control with a combo of increased meds and time, the further out we get from surgery date. He does want him to avoid stress and get plenty of rest..defining stress at age 7 can be somewhat difficult..ahhhhh, it is now wait and see...(not my strong suit)

Jackson is still lacking in the endurance department..he will get a spark of energy that will last an hr and then he is back to requiring some rest. I miss my crazy, running-around-like-a-mad-man boy!

God, I pray that Jackson will heal very soon and be back to his pre-surgery status. I don't like thinking that something is wrong with him and I have no IDEA what it is or how to fix it!! Praying for patience and recovery. God has a plan for Jackson, that I do know.

Here's hoping to wonderful updates next time!

Tina

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