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