It's that week..

It is definitely that time of year.. it didn't hit me until about mid-day yesterday when I started to become very agitated, sensitive and somewhat irritable.. just figured it had a lot to do with getting the kids ready for school & the day-to-day hustle but it dawned on me like a flash of lightning..this is the anniversary week of Jackson's accident. It will have been 8 years ago on Friday that his accident happened. 

I remember feeling like this, in the past, during this week but not at the VERY beginning of the week.. Ugh~  I really try to not think of the coming day with negative connotation and I wouldn't characterize my feelings as such. I mean our son survived the unthinkable and is a shining light in this world ... the feelings are just more emotional and raw. I'm realizing that I need to give myself a little grace and put all my faith in God, especially during this week. He will guide me, nurture me and continue to build hope within me. 

I was asked several months ago to give a speech at Children's Hospital for their nurses conference this week. I had agreed to do so thinking it would be a perfect way to celebrate Jackson's journey, especially a day before his anniversary. Lets hope I was right and get through it without blowing my nose in the microphone or getting mascara all over my blouse. :) I'm truly excited to share his story to a group of nurses. We have so much respect and admiration for what this great group of professionals do on a daily basis.   

Jackson is absolutely the strongest little guy ever! He has a spirit that is unlike anyone and the courage to take each day with happiness, laughter and a smile. I learn more from him everyday than I ever thought possible. He is a mirror for ALL of us to emulate. He continues to grow stronger everyday and I am so proud to be his mom. 

I'm sure it doesn't help that my baby is starting high school as a sophomore tomorrow and Jax will be in 4th grd! Both boys are looking forward to a new and exciting school year. Jackson has become Mr. Independent and somewhat stubborn (he gets that from dad obviously) so he may give his para a run for her money. :)

Brendan had the best idea over the summer. He asked me if he could have bracelets made for Jackson, absolutely! He came up with the design, concept, colors, text, etc. They turned out great! I truly feel like this is part of his healing process and paying tribute to his brother. He is selling them as a fundraiser for the Pikes Peak Challenge - please email me if you are interested in purchasing any. $3. per bracelet or 2 for $5.00 - 'No Excuses' PERFECT, you will never hear an excuse from Jax as he approaches difficult situations! 

Thanks again to all who continue to follow this slacker-blogger. ;) I appreciate your encouragement, love and support!

With love,
Tina

Long awaited update

I promised an update; it is just happening much later than I planned. Sorry..  Jackson has been doing well since being home from the hospital. He enjoyed his post hospital stay in our room for about a week after being home. He couldn't understand why he was being "moved out" after he had gotten so comfy w/ his mattress in our room. :) He told dad "no move out, me stay." That boy sure can talk in sentences when he is motivated! 

We will be planning a swallow study soon, just to make sure everything is the same with his swallowing of multiple types of drinks, w/ and w/o straws. 

Since being home he has been weened from one of his three anti-convulsant meds, this is a big step for him since his hemispheretomy! We celebrated at... you guessed it Ihop. :) Praying all continues to go well and he remains seizure free. 

We have many appointments approaching in May - rehab doc will be up first, Jackson's walking has been going well but when he stands he throws back his left knee & hip which is creating a different gait pattern.. we will see our PT this week and I'm sure she can help us to adjust this issues.. things are ever evolving as this kid grows and boy has he done a lot of that lately. He's almost as tall as me, ok that may not be saying much, but he is close. ;)  He also has an appt. with the epileptologist this week. 

We were blessed to get to see one of our favorite doc's a few weeks ago. Dr. Grabb is the neurosurgeon who performed Jackson's initial craniotomy and is an amazing doctor. Unfortunately, he will be moving to Kansas to work at their Children's Hospital, lucky for that area, sad for Colorado Springs. What do you say to the man who saved your son's life? Thank you just doesn't seem to be enough.. we got him a pocket watch and had it engraved. That is one person we will never forget. 

Thank you again for those of you that continue to read our blog. I need to catch some sleep before tomorrow.. it is IEP day, say a prayer that we all walk out with a smile. 

Tina 

Spring illness

Hi all, you know it has been awhile since I posted when I can't remember my own blog site. :/ I always think of posting and wanting to share with you all many of Jackson's great milestones but then life gets busy and I'm in bed way earlier than I usually plan. But today is different, I do have some "extra" time as we find ourselves once again in the hospital.. . It really is difficult to go from doing so well (Jackson health wise) to being on oxygen and admitted in a quick amount of time.

Jackson has come down with what looks like pneumonia. It started as an ear infection and led to a nasty cough w/ the requirement of oxygen within hours. He is always such a good sport but this admit was particularly difficult. I think he definitely understands what the word "hospital" entails, as great as the staff has been in the past and the miracles that have happened here, it is still just the word that can cause a small thorn in your side. While waiting to get things rolling in the ER, Jax was crying "Mom, me home now" very loudly and with gusto .. this lasted for about an hour and broke my heart piece by piece. Eric and I tried every negotiating tool we could but he was on a mission to go home. I absolutely hate to see this little guy go through more illnesses. Sorry to utilize the blog as a venting place but tonight that is what I'm doing.. sigh. I'm running on approx. 3 hours of sleep over the course of 48 hrs, I think I'm border line zombie at this point.

It is hard and I feel the same old anxious feelings coming out of my bones.. as many times as we have done "this", you would think I would have it down pat. That is not the case. I can admit that I'm not good at the hospital/illness life and it brings me to a negative place. I'm trying to get better at "this" and maybe one day I will.. but until then I continue to be reminded of how resilient and strong Jackson is, he is one of a kind. I also have to praise his brother. Brendan is nothing short of a wonderful big brother and supportive kiddo. The older he gets the more sense all this makes to him and he really does his part to make this situation more bearable for everyone.

I have been following a blog recently and it was written by a very courageous mother of four who had terminal cancer. She passed away this week and we send many prayers to her sweet family. She really focused on finding grace and Jesus, even in the difficult times.  I found grace today and thought of how precious her words are.. we had a visit from an elderly gentleman who is a volunteer at Children's Hospital, as he walked in the room he could tell Jackson wasn't feeling up to par and asked if he could tell him a story.. Jackson quickly said yes and the man told him the story of the Ugly Duckling.. he reminded Jackson that no matter how different we are there is always something beautiful about us and not to listen to the negative things but focus on the positive. It was really touching and reminded me that even in the difficult times there are signs of beauty.

Thank you to all of you who are still following this blog. Again, I apologize to write in the difficult times but I promise to post some of the great times soon.  Please pray, our almighty Team Jax, for quick healing for Jackson.

With love,
Tina

Summer fun

I can't believe it has been almost 5 months since I last posted. Time sure does fly.

We made it to summer, whew! I was definitely ready for this summer Can't believe we have one son going into high school (help!) and another in 3rd grade. I just want to freeze frame these sweet boys.

We enjoyed the spring by taking a quick trip to Lake Havasu, AZ. As always, Mimmy and Papa spoiled us rotten with good food, great fishing and relaxation! It was also Jackson's first time flying since his hemispherectomy and he did great. Flying can be a trigger for seizure activity so we were a little apprehensive, thankfully all went well.

Majority of the summer has been spent with sports, all of which we love! Brendan is preparing for high school basketball and Jackson played baseball again. As always, baseball was so much fun. We are lucky to have the best coaches and players. :)

For those of you that know Jackson or even those who have recently met him, you know almost immediately that he is a HUGE football fan & an even bigger Denver Broncos fan.. he was able to participate in a football camp today with the Denver Broncos! Football skills and drills were set up and he made sure to go through each one at least 4 times. :) 

I was so excited when I first saw this opportunity and knew right away it was perfect for him. It was such a great experience and Jax made the news. :) You can view the clip here

-  http://www.9news.com/story/sports/nfl/denver-broncos/2014/07/08/denver-broncos-ben-garland-david-bruton-national-sports-center-for-the-disbaled/12386573/

 

We are so grateful for programs like this one. Inclusion is so important to anyone in life, disabilities or not. The players we met were Ben Garland and David Bruton, both were super cool and treated all the kids with respect and kindness. I think we will go out and get one of their jersey's. :)

Big brother also went but I think he was hoping to check out the cheerleaders. ;) He also enjoyed seeing Jax have the time of his life.

I hope we can participate in more events similar to this one, what a great day!

Don't forget, the Pikes Peak Challenging is approaching soon, Sat., Sept. 6th to be exact! Team Jax would love to have you join us for the Summit Hike, Manitou Walk or the new option- Barr Camp Hike. Please visit www.pikespeakchallenge.com for more information and to register!

Thank you for staying in touch with us via the blog. I will update next time on a more detailed front. We appreciate your support and encouragement.

With love,
Eric and Tina Ziwak

Smart & growing boys..

I had to post the following stories because they are so heartfelt to me in many different ways.

Like a lot of 8 year old children, Jax likes to lay in our bed at night and sometimes if we fall asleep too, he gets to sleep in there. (No complaints as I love to snuggle with him.) So.. a few weeks ago, Jax was trying to sneak into our bed & asked Eric "I sleep dad bed" .. Eric told him not tonight.. a few minutes later Jax asked to get down, Eric assumed he was going to go to bed but after he got down, he found our throw pillow on the floor, scooted his little butt up there, grabbed a nearby blanket and said "night night floor." Of course I was so proud of him for doing his own problem solving but also deep down for displaying such "typical" behavior. Eric and I both remember Brendan coming into our room with a handful of blankets to make a pallet on our floor. It was just very heartwarming and sweet all around. Jax is really coming into his own and attempting to solve problems w/ no influence from those around him. :)

Another sweet story (I'm just full of them tonight) - Jax was asked to be the honorary ball boy for the high school basketball team and was told Brendan could assist him, as he is much cooler than his mom. :) I was a bit nervous at first having Jax on the hardwood floor courts (in case of a fall) combined with all the noise & commotion that comes with a good game. BUT, his very awesome big brother took great care of him!! Brendan introduced Jax to the coaches, players and managers who were ALL very kind to Jax. It was a very proud moment for us; seeing Brendan protect and care for his brother amongst his typical crowd, it was very special. Love these boys!
Big thanks to our PT who helped make this possible and her sweet son that helped out too, THEY ROCK!

A situation that happened just today made me really reflect on where we are now and where we have been.. I think these situations are meant to do that and put in our path for a reason. Jax had a vision appt., as we were leaving the office a lady was chasing us down the hall.. I figured I had forgotten Jackson's water bottle, doc report, etc.. (as that happens more often than not) .. The lady instead asked if she could please say a prayer for us. She said she hadn't done this before but felt compelled to pray with us. She said she understood if we were not comfortable with it .. I told her we would love for her to say a prayer for us, it was less than 30 seconds and extremely heartfelt. She went on to say how beautiful Jackson is and the grace she hopes for us. It really took me back to a time when I paid attention to the people staring at us at restaurants, swimming pools, the mall, etc.. and how it would bother me so bad and bring out the "feisty" side of mom. BUT, today my first thought was not that she is approaching because of our "situation" because really our situation is "normal" to us & we don't let the looks bother us anymore .. that my friends, means we are growing in our journey (thanks my good friend, she knows who she is, for your listening and understanding) I was also very open to her prayer and knew it was coming from a good place!

We visited 2 high school 8th grade orientation nights last week & boy was it an experience! My baby is growing up and will be in high school next year! It is definitely an exciting time but also a little scary :/  Brendan seems more than ready for this next chapter in his life.. and in turn so are we (with a bit more anxiety!)

Jackson's IEP is tomorrow! Wish me luck, they can be very productive but also emotionally draining. We are blessed that he has such a great school team who all work together for the greater good of our little guy! Regardless of the warm and fuzzy feelings we get at times, we still have to be on our toes and doing some of our very best advocating for Jackson's needs!

We are grateful to those of you that continue to read our blog and send your support! It really means a lot to us, more than I can say!

P.S. For those that read the last update, we did get xrays of Jackson's pelvis and back. Good news, the pelvis is unchanged which in the world of hip xrays, is a good thing! The back, however wasn't so lucky, the degree of his curvature has increased some. The doctor isn't overly concerned but it is something we will need to keep a close eye on. The PT is going to show us some nightly exercises to help maintain the back muscle strength. She continues to be a fantastic resource for our family!

Tina

Dogs and thoughts..

One of Jackson's favorite nights of the week is when we go to puppy class! He is on the waiting list for a service dog and part of the process is being able to attend basic training classes. It is a nice chance for us to get to see what goes into the training and for Jackson to get used to the 'key' words that are used with all the dogs. I'm very intrigued by the entire process & inspired by the volunteer families training the dogs! We will need to be very patient as it will probably be awhile before Jackson actually gets "his" dog. We know it is worth the wait but so hard when you are this excited! :) Jackson was able to walk around with one of the dogs (not the one he will get) that is currently trained as a mobility dog. He was smiling ear to ear and kept telling me "no help", it was so amazing to see how a service dog is going to open so many doors for him! 

  
We've come to the time in our journey when you start seeing people stare, for whatever reason, and continue to ignore it. I wonder as I think of those with disabilities, do people see past the disability and get to know the person? Their is someone under the walker, wheelchair, speech impediment, awkward gait, etc.. that is funny, kind, smart and perceptive of the world around them. I just wish more people would get the chance to get to know these wonderful souls that we tend to group our 'uncomfortable' folders, more so because we just don't know how to act.. it all comes down to just being yourself and acceptance of those who are 'different'. People with disabilities didn't do anything 'wrong' to be where they are today, they are just like you and I with the same heart and tendency to be accepted by society. Please take this part of the post as a "this is what happens..", not by any means a judgment on anyone!

Jackson's poor left leg is starting to bother him! It could be a variety of reasons, anything from ultra tight hamstring, knee/hip issues or spine. He is getting a series of back/hip xrays this week, hopefully everything will look okay. We have also been doing more stretches throughout the day to see if that will help. He puts a lot of pressure & weight through that leg since it is his stronger one. We are so proud of him for all his walking but pray it isn't creating any "new" issues! 

The boys have enjoyed spending time with both set of grandparents but they all leave this week to enjoy warm weather places. :) We pray that they have safe travels! Jackson would rather be with his grandparents than do much anything else! We are grateful for all their help! Mimi Debbie celebrated her birthday yesterday, Happy Birthday to the best mom a girl could ask for! I love you so much!

Time to prepare for the week! Thanks for standing by us during this journey! Your positive words and encouragement keep us moving forward. :)

Unfortunate that the Broncos took such a crushing loss today.. hope to see Manning back next year!

With love,
Tina

Fall season

Thank you to those of you still following our blog. I know I don't post as often as I used to..making a goal to get better at it!   

I hope everyone had a wonderful Thanksgiving.  We kept it nice and low key, spending the day with family! We are really thankful for so many things; first and foremost our fantastic family! They are always their for us in our fast paced lives. They have come to understand that our day to day routine is not that of the typical household & they really pitch in a helping hand!

We've had a busy fall season! We moved into our new home, a rancher!! We are still getting settled in, oh how quickly you forget what goes into moving. Jackson's room is on the main level which makes life so much easier for him and us. We found him a low profile bed; it looks like a big boy bed but sits low enough to the ground where he can get off and on by himself! He seems to love the independence and picked up the lay of the land much quicker than he has in the past. It must of been meant to be for him! Brendan is also enjoying the house, being close to his friends again and not having to share a bathroom with his brother. :)

Brendan just finished his 8th grade basketball season as one of the Captains! Very proud of him! He is working hard in school & recently received a positive referral :) .. Go Brendan!  

On a medical front, Jackson is rocking it! He is on a break from PT, yes those of you who know me, know this was a HUGE step..his PT can attest. She was very patient with us during this transition and left the door open for questions, concerns, etc.. We are forever grateful to Jackson's fabulous therapists!  They are always available when we have questions and help to calm my nerves. So, you may be wondering how he is doing after 6 years of PT and his first break - GREAT! His balance has never been better and seems to be improving weekly. He is able to make sudden stops and turns w/ no issues, walk with his socks on on the hardwood & not take spills. :) Unfamiliar environments continue to be challenging but even that is getting better.

He is also making some really nice gains in speech therapy. His therapist is honing in on some very functional language skills.. Jax has a tendency to leave off the last sound of a word so she is using lots of repetition and sound play.. She is also trying to expand his words from 1-2 to 2-3, including some of the connecting words (the, in, on, etc..) It is helping & Jax is working super hard at saying the words. This is when we wished the speed of conversation and the fast pace life moves at, would slow down. When someone asks Jax a question, he fully plans to respond, just takes him longer to recall the word and say it. Sometimes by the time he has the word, the other party has went on their way. We are trying to find a nice way of explaining to people that if they wait a minute, the response will come. :)

I need to start keeping a book of all the funny things this kiddo says. He has the best sense of humor and cracks me up on a daily basis! Especially on Wednesdays, Hump Dayyy! He says it way better than I do. :) We were saying prayers tonight & I included 'thank you for Jax having the ability to make anyone smile' & 'Brendan the kind heart to work in the special needs room at his school' ..He has really developed some nice friendships.. What a gift! Both boys are so special in many different ways!

Here are a few recent pics of the boys!

Our gratitude to all of you for still thinking about our family and keeping Jackson in your prayers. I truly believe he feels all the love and support!! You don't get to where he is without encouragement, strength and a STRONG support system!

Tina
Merry Christmas and Happy New Year!

Already July?!

Where has the summer gone?! I can't believe it is already end of July. The kids go back to school next week! Jackson is ready but Brendan would like to enjoy summer for a little longer.  ;) A 2nd grader and 8th grader, my how time flies!

Both kids had a busy summer. Brendan has spent a lot of time on the court either in a pick-up game or practicing with his team! Proud to see him with such dedication and drive! Jackson was also the sports guy, playing baseball every Sunday in June, with so much enthusiasm. He would literally wake up Sunday morning and ask to "bat" till we would leave for the game! His team had a wonderful coach who enjoyed the game as much as the kids. Here is a brief video clip that was done on the Challenger league, Jackson is in it briefly standing on 2nd base with dad! http://www.fox21news.com/news/story.aspx?id=905020

Jackson is also in speech and occupational therapy. He had botox on his right arm and the dr. recommended an intense round of OT to help maintain the effects. He is using the right arm when he feels the need, not necessarily on a regular basis. He definitely picks and chooses when the best time to use it is.. if he can wrestle someone with it, absolutely he will use it..if you ask him to hold something with it, he's not too interested in that. We have gone back and forth with attempting the constraint therapy again but that comes with a lot of different issues, balance being one of the biggest! We are still perplexed with his balance issues, some days it is better than others & in familiar environments it is always better. The doc brought up a good point regarding Jackson's vision playing a fairly large part. Considering he has the right visual field loss, which throws off his visual perception, then mix that with unfamiliar places & you get poor balance. Plus his neurological issues on top of that... I can only imagine how frustrating that is for our guy.  He sure does get through each day like a champ! 

So..the fun news, we are starting the application process for a service dog! Every time we mention it, Jackson says "yay" and gets super excited. I think it will be a benefit to him on numerous fronts, primarily for balance but also for assistance holding items, preventing falls, warning him of dangerous areas (stairs) and motivation to do other tasks. I'll keep you posted! It is a lengthy process and typically their is a waiting list.

The boys (Brendan and Eric) will be hiking Pikes Peak again this year! This marks Eric's 5th year hiking and Brendan's 3rd! If you would like to donate to either of them, you can go to www.pikespeakchallenge.com, click Donate and select one of their names from the list of hikers. All proceeds benefit the Brain Injury Alliance of Colorado! Any help you can offer is greatly appreciated! Jax will also be participating, with Grandma Debbie's assistance, in the 3-mile walk that has been added to the Challenge! If anyone would like to join Team Jax, please check out all the information on the website!

Thank you for continuing to support our family. We have run into some of you recently who have said you still pray for Jackson, that really means a lot to us!  Every day is a gift and we try hard to treat it as one (on the tougher days I have to tell myself this a few times a day!)   

With love,
Tina

Parties, birthday and Challenge!

Hi all!
Happy Spring/Summer!

Jackson has officially taken a break from OT & PT! His therapists had a little party for him, here are a few photos - all his fav things..cake, apple juice, Rocker (therapy dog) and presents :) They really know how to make a boy feel super special - thanks ladies! Looking forward to seeing them over the summer when Jax does a few weeks of intensive therapy.  As hesitant as I was to take a break, I must say, Jax has done really well!

Baseball has officially started! Jax is on the Rockies with a lot of his pals & best bud Ty..he looks forward to Sunday every week & doesn't stop smiling till we leave. Brendan and some of his cousins are baseball buddies, a great program where they get to help the team! So grateful to brother and the cousins for supporting all the kids! I hope they know just how much they are helping the team. :)

Speaking of school, Jackson has had an absolutely fantastic year both academically and socially. He made huge gains with his academic goals and classroom participation. We have also been very fortunate to have some wonderful teachers & 1 amazing para! Way to go buddy! On to 2nd grade, ahhh, can't believe he will be a 2nd grader &  turning 8 yrs old on Friday - Happy Birthday my angel!! You are the most amazing, resilient warrior I know! Cheers to you Jax!

Speaking of his birthday, I'm hoping he will be on the mend by then..his allergies have been crazy for the last few days & tight cough. We are going to the doc tomorrow for a look over before we attempt to go on vacation to Mimmy's! Pray he feels better and can enjoy the road trip, he is ready to do some fishing (or throw the pool in the lake like a few years ago :) 

We are getting very excited to move into our new home. We decided to have a house built so we could make things more accessible and Jackson friendly. We felt a rancher would be much better and give Jackson more independence (even though now he has high aspirations of going up the stairs by himself!) Once we are in the house we will put in additional railings, shower bar, ramp outside, etc..  Brendan is also super stoked to get his room in the basement, told him I'm installing a spy cam ;).

Quick side note * Registration for the Pikes Peak Challenge is open!! Two options- Classic Summit hike or our new 3 mile, family friendly walk in Manitou Springs! Team Jax would love to have you on our team as hiker, walker or volunteer! More information is at www.pikespeakchallenge.com! Or feel free to email me tinas.quest@yahoo.com... Registration is discounted at $30 till June 15th! Nice pics from last year!

We appreciate all of you keeping Jackson in your prayers! He continues to work hard every day..I can honestly say that he never misses a beat when it comes to pushing himself to the limit!

With love,
Tina

2013 ~

Hi all! I hope everyone has had a nice start to 2013. We are off in full swing with the sell of our home and the search for a new one. I think we were all a little sad to leave our home, so many great memories. Jax learned to walk & crawl, not 1 time in that house, but 2!! Brendan went from a toddler to a teenager and encountered some of the most trying times a school aged boy could! We shed many tears within those walls & said numerous prayers. A home holds many memories but the ones that will stay with you forever are the ones to treasure. We are excited to get a new house that will allow more independence for Jackson & many more joyful memories!

Jackson got his first pair of eyeglasses! The pic below was taken when we picked up the glasses & needless to say, he was not crazy about them. His little mad eyebrows say it all... They have yoke prisms in them, which help with his right field visual loss, everything is shifted to the right in an attempt to train the brain not to neglect that visual field. In theory, this should also help with his gait & balance. His vision teacher and para have both noticed a positive change in his vision with the glasses on. :)  He looks so studious in them.

Brendan is staying active with year-round basketball. He has a game at least every other weekend, if not every weekend and practices 2 x's a week. He is doing well in school and continues to be such a help around the house. Selling our home wasn't easy on him, but he has really stepped up to the plate and been understanding.  While we look for a home, he is sharing a room with brother. This makes Jackson extremely happy, not so much for the teenage brother. ;)  Pic of his bball team, they won a tournament a few weeks ago!

 

After 5 1/2 years of continuous PT & OT, we are considering taking a short break.. Yes, I can't believe those words are coming out of my mouth. I am a huge advocate for therapy and have seen what it can do, not to mention the amazing, talented and caring people who have helped us, more than they will ever know! We have talked to the rehab doctor and therapists and all feel Jax is ready to be an active boy w/o the weekly therapy appt's. They will be providing us home therapy programs and have made themselves available via phone (they may regret that) :) We will look at doing a round of intensive therapy which is 2-3 x's a week for approx. 6 weeks. Research shows that after a certain point of recovery, intensives become very important and beneficial. Please wish us luck as we approach this change. I'd be lying if I said I wasn't nervous, this is what we have known for so long, not to mention what has gotten Jax to where he is today.

School continues to be one of Jackson's favorite places! He asks for it before we even get in the car & screams Miss Cheryl's name till we park. He has so many nice friends but 1 imparticular that shows such compassion & understanding for Jax. If every child could be as caring and at ease with those who are different, as this little boy, our world would be a more comfortable place.  He treats Jackson like he does all the other kids but, makes modifications where he needs to, so Jax can participate in all activities. I hope when he gets older, he knows what a difference he made on Jackson's life.

Thank you to all of you for checking in on our family! We continue to take life one day at a time because we know tomorrow could be completely different.

Tina

So much to be thankful for

My sincerest apology for not posting sooner. I feel like one thing calms down and another comes about, without warning.

As I was talking to someone today, I was reminded that we were at Children's Hospital, this time last year. I can remember feeling sad, but not because we were their, but because of all the nurses and doctors that were there. They took just as good care of us as they would any other day of the week, even while knowing their families were gathering for dinner, friends for lunch, etc.. and yet, it never seemed to bother them. We will say a prayer for all the medical personnel working in the hospitals during the holidays and for all the families that are there too.

I am so thankful for our family, friends and supporters. We have some amazing, caring, supportive, understanding, compassionate, warm and loving people surrounding us on our journey. To them, THANK YOU, you will always be very important to us. We tell Jax often that he has a Team of Champions in is corner, he gives us that wonderful, big smile.

To say I am thankful for the following people is an understatement, I'm beyond grateful for them. We have been blessed with some fabulous teachers, therapists, paras, doctors, surgeons and nurses. All of those professions are a calling and I am SO glad you all heard the ring and answered!  You are and will always be a part of our family, forever!  As a parent, it is challenging to put your trust into somebody else's hands. But, had we not listened to them, trusted them, prayed for and with them, we would not be as blessed as we are today. Thank you to those special people!!!

We are thankful to be home this year, to celebrate the holiday with our family and friends! Please don't take for granted the smile on your children's faces, the sound of their voice, their laugh, the silly things they do, their hugs and most of all who they are. We are not all the same (thank goodness), we are all different, appreciate the good in others and let the other stuff fall to the waste side.

A quick video below of what Jackson is thankful for: Basketball hoops! He sure does follow in his brother's footsteps, who by the way, made the 7th grade basketball team and was nominated captain! So proud of you, Brendan. We will celebrate his 13th birthday this week! Happy Birthday wonderful boy!  

Jax has just started getting some of his balance back, THANK GOD!  He has worked very hard. Lately, he has wanted to start standing up from the floor with no assistance, so everyday, without prompting, he goes to the living room and  practices. He did this for many weeks and now mission accomplished! The old saying always rings true, "Hard work pays off." I will post video soon.

 

HAPPY THANKSGIVING FROM OUR FAMILY TO YOURS!!

 

Bridges to cross..

 

 

 

 

 

 

 

 

Team Jax rocked the trail at the Pikes Peak Challenge!! It was a high emotion day especially with the presence of our own Rock Star, Jax. :) He was able to join everyone at the park celebration and everyone who met him was inspired, seriously, how can you not be! .. some good PPC facts: the 1st hiker to make it to the top was part of Team Jax, good job to Mr. John Leary! You made Team Jax proud! Shortly after, our strong boy, Brendan Ziwak, made it to the top in 5 hrs, 20 minutes. That is amazing for a 12 year old! (even though he did do some vommitting that evening, that's what happens when you hike your booty off and then eat 3 bbq pork sandwhiches)..Dad, Kendall (1st timer) and Steph made a great hike as well..  We are blessed with so many Team Jax supporters spread all over the mountain showing their love and support to our little man! You guys are super wonderful people!  I would be mistaken if I did not think my great family for jumping in and helping the event to be a suceess..Lisa was volunteer coordinator, Cheryl controlled the radios (not the radio chatter :)  and Mimmy took great care of Jax. I hope more of you will join in the cause next year!

I started this post with 'Bridges to Cross', because yes once again, we have built a bridge that needs to be crossed. Jax has started a new med for his seizures BUT with the new med has come new side effects, ugh! We are still trying to work through the side effects to see if the body will adjust to it.. I sure hope so!! The med has caused muscle weakness, balance issues, fatigue, ataxia (shakey muscles).. it seemed to be getting 10% better last week but no where near where he was..it is hard to see him like this when just 4 months ago he was doing so well (that's a hard push on the period key.) Breath, pray, hope..that is what we do, or at least I do. 'Let us hold on to the confession of our hope without wavering, for He who promised is faithful. Hebrews 10:23

 

 

An update on my older, wise, teenage boy! Brendan is working so hard in school and keeping us busy with many basketball games! No complaints, we love to watch him play ball. He is becoming a teenager in his own right and showing signs that maturity will come knocking on our door soon. ;)  His brother doesn't let a day go by without making sure he knows where his Bubba is at all times of the day. Boy do they love one another.

We recently found out that their is another family in our city who's son will be undergoing the same brain surgery (hemispherectomy) that Jax had. Our thoughts and prayers are with them. It is a scary, scary time but with so much love and support, they can get through it.

We go to Children's tomorrow for a follow-up with Dr. L (epileptologist) regarding our game plan and what options we have from here.  The next few months will be spent in therapy, Jax doing what he does.. working hard to regain his balance, strength and unfailing determination!

Keep fighting my sweet boy and we will be patient! Love you!

Tina

Team Jax is awesome!

It is that time of year again..the Pikes Peak Challenge!! TEAM JAX is the largest team, woohoo, you guys are awesome. We have the largest team we have ever had with 25 members!! I'm so excited. This will be Eric's 4th year hiking and Brendan's 2nd! Both are equally excited to hike the 13-mile, 14,115 ft. Pikes Peak.

All proceeds benefit the Brain Injury Alliance of Colorado -  the ONLY statewide non-profit exclusively dedicated to brain injury. Their mission is to improve the quality of life for people with brain injuries by connecting survivors with resources to help navigate the path of rehabilitation...I understand everyone has many financial obligations but we would greatly appreciate any donation. Brain injury is tough, not only for the survivor but for the family and friends as well. It is not cured overnight, it is not an easy journey and it definitely does not receive nearly enough funding for our community needs. Please consider donating by going to www.pikespeakchallenge.com, click on Make a Donation and select Brendan or Eric from the hikers list. I will be sure to post as many photos as I can including the Team Jax shirt Eric designed this year, one of my favorites. Thank you in advance for your support!!

Speaking of the hike, I have the greatest Jax story... we were hanging out a few nights ago and Eric happened to have his Team Jax shirt on. Out of the blue, Jax pointed to the shirt and said "Me hike", Eric and I couldn't believe he made the connection, especially since we weren't talking about it at the time. So when I say Jax feels all the support and love, he truly does!

Quick update.. Jax is really enjoying 1st grade. He looks forward to going everyday, has some very nice kids in his class and most of all likes to see Mrs. Cheryl (para). :) He is still requiring more rest than last year but if that is what he needs than that is what he shall receive. Unfortunately, he is still battling the residual effects of surgery.. the ptosis has subsided a great deal but now his right eye is getting "lazy" (for lack of a better term.) This is especially noticeable when he is fatigued. This is also a symptom we have not seen for some time. One of the docs at Children's told us that sometimes, not often, but that surgery can take a survivor back many steps in their recovery, similar to their early days. I now believe she was right!.. Still having seizures which really sucks! It just doesn't seem fair.. I can say that all day even though I know life is not fair. He has battled so hard for so long, he deserves a good year of smooth sailing..one of these days! Keep battling my sweet child!

Thank you to those of you who still read the blog and have a special place in your hearts for Jackson. What a gift you are to us.

Tina

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