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