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