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!!