Seizure Meds

Tristan painting pumpkins today!

Hello!

What an exciting few weeks. Tristan is finally getting over Whooping Cough. He is still coughing some, mainly when he laughs or starts crying.

We had an appointment Thursday with his neurologist in Cinci, and we are going to start weening him off his Topomax. That is one of his two seizure meds. Things are going good so far. He said the first week would be crucial, because his levels will begin to drop. We are praying for no seizures! I feel in my heart though that he is good to go.

Tristan is also not attending school right now. Due to his Whooping Cough his body is still not 100% up to par. And with all the H1N1 going around, we are not risking anything. His pediatrician agree with us also. Soo Tristan will not be going back to school to probably after the first of the year is my goal. Just need people to start getting healthy!

Tristan is doing great otherwise. This week we will begin doing physical therapy twice a week with Bobbi at URS, once on "land" and once in the pool. We are also hoping to start doing OT twice a week now. Our insurance company is approving more sessions now.

We have also started what I call "computer game therapy" in Cincinnatii with the Perlman Center. Beth is our therapist. She is great. She is very possitive, and is good with Tristan. We went last week for our first time. She made us a CD-Rom with adapted computer games for Tristan to do at home. It also features storybooks using a powerpoint program. Its hard to explain but its really neat, and Tristan loves it.

Overall, Tristan is doing great. We are keeping really busy with all this therapys and starting new therapys. Therapy is officially me and Tristan's life anymore. But it is what he needs, and he enjoys it ( most of the time) and I got to do whats best for him!

As of September 27th....

New chair on the side view, and then of course Tristans big smile!

Tristan in his stander, this helps build his bones stronger, and also has a tray

Tristans 1st day of preschool. Monday September 21st

Hello!

Well lets see, since we have been back from Michigan Tristan is FINALLY starting to feel better. He had the stomach bug for about 24 hours over Labor Day weekend, then came down with a respiratory virus. He did not start school until last Monday, and only went two days. I did take him in on Thursday for his very first school pictures!
Since we have been back we are still seeing good things with Tristan. His hands are more open now than ever before, and his head control is doing well also. He is still able to pull himself up if he is a bent over touching his toes kind of position.

We are working on getting him a tricycle, its just a matter of finding the right one for him. I have seen them in several catalogs and then with the kettler website.

Also since we have been back Tristan got his new chair in, ( what you see in the pics) this is a feeding chair/play chair. He can sit pretty close to a 90 degree angle and then the chair has a tray for him to use to put toys on. We have also got his stander adjusted again ( thanks Bridgit and Mel!) and have been putting him in that every day. He is tolerating it for about 30 minutes right now.

We also started seeing DR. Bargus-Adams in Cincinnatii for Cerebral Palsy Clinic. CP clinic is a time where we go and see 3 doctors, nutrionalist, social worker, and therapists all within a few hours. This saves me alot of trips down there. They are very happy with him, and happy with what we are doing for him at home. We go down to the Perlman Center in mid- October to meet with Beth, an Occupational therapist who has a lot of great ideas on computer games for Tristan to use. The Perlman Center is an AMAZING resource, and is a large part of the reason why I transfered Tristan to Cincinnatii Childrens.

Otherwise he is doing great, he is getting SOOooo BIG!

And as of right now, we will HOPEFULLY be taking Tristan back to Euro-Peds next summer again. It is a very exspensive trip, and will be working on more fundraisers to help him get back up there again, more than likely! If anyone still wants to donate money to Tristan you can still do that through his NorthOakland account, or his National City account. Both of these accounts will always be open!

for those who havent heard...

Well.. the last day in michigan did not go as planned.
Tristan woke up at 7:30 friday morning vomiting and had a slight fever. So, we ended up cancelling Friday at Euro-Peds and started the journey home about noon.
Tristan did get sick 3 times on the way home, and finally quit vomiting about midnight friday. So he is doing better now. Still not eating too much, but is on his way to recovery from being sick and all his therapy
Now I got his Michigan stomach bug, and we are trying not to pass it to anyone else! So we have been laying around at home, not seeing anyone yet!!!
Euro-Peds was a great expierence for Tristan. It pushed him like he hasnt been pushed before. Overall he did great up there, and hopefully after our stomach virus recovery he will continue to hit those milestones.
Once again, thanks to everyone who helped us get to Michigan with Tristan. For all the thoughts and prayers. Tristan is very lucky to have such a HUGE support group. And Chris and I both are thankful for it too.
I will continue to post on here how Tristan is doing. I will not be posting everyday, but will use this like his carepages. I will do updates on Tristan, how some of his big appointments go, and how he is doing in preschool this year.!

Day 9

Hello.
Sorry so late tonight, been busy packing up everything! We are pretty much loaded up now, and ready to go! Tristan has therapy from 12:30-4:30 tomrw ( friday ) so it will be late before we get home!
Tristan did okay today. He had a rough day. He has been doing lots of "startling" reflex when he is laying on his back. When he does this he does the loud panic cry, and his arms fling in close to his face, causes him to rip his glasses off, and scratch himself, or even bite his finger like he did today. This is not new, he does do this at home sometimes, just not near as long. I just have to hold his arms down and do lots of that mommy comforting, and he will calm down. It just takes awhile. Other than that he did really good.
He got to play with Karla again today, and the 2 new hires, which the more girls for Tristan the better! :o) Once again he did alot of neck and trunk work. He is doing great with his head control. Still not like we would "want" it to be, but hes doing great! Holly keeps saying that after we get home, and he gets in routine, and his muscles rest, that is when we will see our best results.. soo hoping thats true!
He got to ride his bike again today, his favorite and was just happy as ever. I think today is the most tired he has been also. He is just getting run down with everything, so going home will be great for him also!
Just wanted to thank everyone for checking in on him/us. We made it through this trip, and hoping to do another trip up here between February / March. Just depends on his money situation, and our schedule in general.
Tristan does start preschool on Tuesday when we get back, so this has been a life changing weeks for us. With the therapy and now entering the "school" age... Our life is going to be different now, no more late nights and sleeping till noon. We will have this home excersie to do with him everyday for about an hour, and I could go on and on! I will post about his last day either late tmrow night or sometime Saturday. We are just ready to come home and REST!

And Day 8 is done....

tristan in the cage today, and he is not happy!

Riding his bike again, saying hi to Ms. Karla at the window!

Tristan on his bike journey... going up the "mountains"

Tristan working on head and trunk control on the ball.. with Bucky Bear!

Once again, working on head/ trunk control, getting tired..

Wow... day 8 is done, hard to believe only 2 days left. Today was a hard day for Tristan. He was very upset with us when we got there, and he relized what was going on. He proably cried for the first 40 minutes or so. He just wasnt having it. THEN... the suit came on, and Ms. Karla came out ( dark hair lady above) and she knows how to make Tristan laugh! Tristan than cheered up and worked very hard. Its nice to hear him laughing through the glass when he is working so hard. He did alot of work on the ball, and was actually rolling over on the ball, along with Bucky his bear. After he got his 15 minute mommy and mamal break, ate a cracker and drank some juice Tristan was ready to get on his bike today. He was on the bike for about 20 minutes or so. Going up and down the mountains and all over the bottom of the hospital. The video below is one of Tristan's favorite parts on the bike, going to the cafeteria and doing donuts before starting the ride back. If you turn your volume up on the computer you can hear Tristan laughing while doing his donuts. Dont mind Holly and I's conversation.

Today we got Tristan's home excercise program.. which was kinda neat. It is full of detailed stretches and has pictures of Tristan to help us continue what he is doing at Euro-Peds @ home. I will have it on me for awhile if anyone wants to check it out!

Today was our last night "on the town".. Tomorrow after therapy we are coming back to the hotel to start packing up since we come home Friday! YEA!!!

Thursday I should get my post up here earlier, and I probably wont post Friday's post till some time Saturday, because it will be late for us getting home.

Tuesday Day 7

Tristan on his bike again today!

He did soo good today, he fell asleep on the way home... him and bucky bear

Tristan had another wonderful day today. So far the best.. he keeps getting better every day, which is what we are going for here! :o)

Dont think that all he does is ride a tricyle around either, those are just some of the easiest pictures for me to get, and when he is having the most fun! He does his hour massage and stretch on his legs when he firsts gets there. Then gets his suit on and works alot on head control and sitting. Then he usually uses the walker or the bike for his "fun" time. He also got in the spiderman cage yesterday again. Then when he gets the suit off he works alot on rolling and more on sitting and head control. He is pretty much in a routine now. Alot less tears today. He is doing good.

Today is also the first time he fell alseep on the way home.

Another great day down, 3 more to go..

DONT FORGET TO CHECK OUT TRISTANS VIDEO THAT I FINALLY GOT UPLOADED ONTO YESTERDAYS (MONDAYS) ENTRY!!!!

Monday.. day 6

Lets go for a ride Bucky!!

Tristan loves the bike! The plaid things on his hands are little splints that help is hands hold on to the bars..

GO TRISTAN!!!

Daddy and Tristan at a German resturant in Frankenmuth

Well, today was AWESOME!!!
Tristan did the best he has done so far today, which is great!

I thought he would be upset going back with the weekend off, but he wasnt too bad. He did cry when I took him into the 'massage' room, and his eyes said "mommy, you brought me back here!"but after they got the video going he was into watching his Barney movie while getting his morning rub down and stretch.

Once in the suit, he was full of laughs today. While Karla the aide was playing with him while Holly was positioning him different on the ball, and sitting right. He then got on the tricycle today, and went on a big trip! They took him down the hall, on the elevator into the basement of the hospital. He was on the bike for probably a half hour just pedling and laughing. It was a great way to start the week!

We talked to another family @ Euro-Peds today, who gave us LOTS of information. Found out that insurnace will not pay for one of the tricylces ( which we figured) soo Kettler is a brand of tricycles that can be bout in a store that we can adapt farther to have a bike for him. SOoo if anyone is at a toy store and sees one, let me know!!! we went to Toys R US up here, and couldnt find one.

We had a great weekend with Chris up here. It was very nice to see him. Tristan and I missed him like crazy. We went up to Frankenmuth over the weekend, and walked around. It was cold, with on and off rain so it was kinda hard to enjoy. At one of the stores though Chris found this Ohio State Teddy Bear that stole Tristans heart. We could not get that bear out of his sight, sooo Bucky the Bear is Tristans new friend, he came to therapy with us today. That is the bear you see in some of the pictures.

Sooo one great day down today, 4 more to go. Tristan is getting soo much stronger, and his trunk control is coming along!

Friday.. day 5

Wow.. hard to believe this week at Euro-Peds is over. It went by really fast, at least for Shirley and I... I do not know what Tristan thinks....
Today was his best day so far said Holly is PT. Granted he still cried some, his body did the best its done. He is relaxed alot more, and not fighting against everything that Holly is doing with him. So that is always great to here.
No new pictures, had to stay pretty low key around Tristan today, because he does do better when he can not see us.
Chris arrived this evening, about 5:00. Tristan was SoooOOOO excited to see him, he would not let Chris out of his sight!
We just got back in for the evening, we took him swimming, and he had a blast chasing daddy around the pool. Right now he is getting his massage, which will become an every day ritual from here on out. It really makes a difference with his muscle tone, and he sleeps great after!
Tomorrow is going to be our family fun day! Cant wait to treat Tristan to a hard week of work!

Day 4.. Thursday

Well.. Day 4 is done..
Sorry its soo late for me to post this, it was a busy day.

Tristan did good today.

He didnt laugh as much as he did yesterday. I think his body is physically pretty worn down. Holly his PT said thats pretty common, by day 4 they are getting worn out.

Today he did his normal routine, got his hot massage and stretching, then put his suit on.

Different though today, he got to ride on a tricycle.. he thought it was the coolest thing ever. Its an adapted bike, and Holly was pushing it in the back which then would make his legs "pedal". With his footstraps on, he was pedling, and when he wasnt laughing at riding a bike, he was looking down at his legs like "WOAH! WHAT ARE MY LEGS DOING!" it was really cool!

His endurance is getting stronger with this therapy program too, because today he did not take a nap again after therapy, though he was worn out, he was still happy and laughing!

One more day to go this week.

I think this weekend we are going to take a lil trip up to Frankenfurth, Michigan ( something like that) its a large German old fashion village, with many german shops and food. They also have Booners ( sp?) which is the worldest largest Christmas store. Soooo it will give us something to do all day, especially since Chris is coming up! Dont worry, I will take lots of pictures! :o)

Off to get some rest though, these days are pretty draining for all of us!

Wednesday.. Day 3

WOW! thats what we have to say for today.
Tristan did AMAZING!!
Today he did not cry for almost the first 2 hours... which is great, hes getting used to the routine, to Holly, and to all the stretching. Because the past few days he has been crying within the first 10 minutes... sooo that made me smile..
Also, Holly asked us today to kinda "stay outta the way" . To stay out of eyeview of Tristan. We learned today that Tristan does SOOOoOOO much better when he cant see us. I was either hiding in the corner, or outside the window. And it was hard to get a good picture through a window.. sooo no new pics today.
He wore the suit again, and did really good. Did some playing on the big ball again, and lots of tummy time and sitting.
The best part of today though was when Tristan shortly after he came out of the suit and was sitting on the floor with his legs stretched out in front of him. His aide today was Karla, and she knew just how to entertain Tristan. While he was sitting she was throwing these suction cup balls onto the big mirror in front of Tristan and he thought that was sooo funny. Especially if the balls didnt stick and would fall off. While he was laughing so hard he would fall forward with his head and his trunk.. then would use his arms to push himself back up in the sitting position. He did this over and over. Which is AWESOME.. because he really does not do that at home. He can, but not as much or that well. Sooo that was a happy tear moment to see him do that. The littlest activities that we take advantage of everyday are big milestones for Tristan.
So today so far was the best day he has had at Euro-peds.
Once again, thank you to EVERYONE who has helped us get here, and for all the prayers, things are going great. Cant wait to see how he will be at the end of this therapy.
Also, found out that we get a hour long excercise/therapy program to take home, that must be done everyday, that helps him keep what he has gained, and to help him gain more.
We also met another family today, who has been to Euro-peds NUMEROUS times, and they say its the best thing that ever happened to their grand-daughter. They have gone to other intensive therapy places, and think that Euro-Peds is the best. Also found out about a couple other options to look into, to help Tristan down the road. It always nice to talk to other families who are in the same boat... because I really do not know any!
Tristan is taking a nap now, and when he wakes up tonight is our "free dinner" at Olive Garden that Mark from Olive Garden on Miller Lane in Dayton set up for us to enjoy up here. YEA!!
Hoping tomorrow goes just as well!
Also, change of plans, we originally decided that we were going to come home this weekend, but have since decided not too. Putting Tristan on a 4 hour car ride right after therapy just seems like it would be too much, and traffic on a friday evening back to Dayton does not sound fun. Sooo daddy ( Chris ) is coming up here friday afternoon to spend the weekend with us! Soo we will see everyone when we get back to the Dayton area, late NEXT friday!
ALSO<> FINALLY GOT A VIDEO UPLOADED LATE LAST NIGHT< BE SURE TO SCROLL DOWN TO WATCH TRISTAN IN ACTION IN THEIR WALKER!!

Tuesday... Day 2....

TRISTAN IN THE FANCY WALKER... COULDNT GET THE GREATEST PICTURE!

AWWWWW.. MOMMY AND TRISTAN ON ONE OF HIS BREAKS

TRISTAN ON THE SWING. ANOTHER WAY TO WORK ON SITTING AND HEAD CONTROL WHILE HAVING FUN...

Well, he did it again!

Had a bit of a mix up with Euro-Peds today on times. Got a phone call from them this morning wondering where we were... I had we were scheduled from 12-4 every day... they apparently had it from 11-3..... sooOOOO.. today they did it 12-4.. the rest of the time will be from 11-3, except tomorrow, which we will be there from 10-2... soOOooo thats getting kinda stressful.. but we are making it work, cause its all about Tristan!

Today, was the same thing, he got lots of stretching of his legs, and they use these big heating pads to help relax his legs before he gets his massage.
Today, during the massage Tristan was introduced to Barney, yes Barney, the big purple dinosaur! He enjoys watching them on the TV while he is stretching and getting his massage.

Today for the first time, Tristan walked with a walker, which was exciting. He was actually the first kid to use it, because its new @ Euro-Peds. He did really good with it, especially when he relized he was moving by himself! ( kinda! )

We came back and relaxed, and got him in the pool. (Thank you Brenda for our pool towels.. they are working great! :o)

He was such a big boy today, he did not take a nap after his therapy, and was kicking around in the pool like a wild little fish!

He is doing great though, and seeing some improvements on the length of time he can hold his head up... especially if he really wants to!

We will be up early for day 3 tomorrow!

Day 1

Tristan in the CAGE with his suit on, the bungee's go against gravity-making it hard for him to do, but has he does it, he gets that much more strength

On the "yoga" ball.. he did great on here, he played with all sorts of toys and had Ms. Erin read him a few books too!

Tristan and Ms. Holly.. his Physical Therapist @ Euro-Peds

Getting all suited up! Took 2 of them to put it on him, and took about 15 minutes!

What a day!
We had to be @ Euro-Peds at 10:30 this morning to do some final paper work and had to meet with a doctor for a general check up, which I found out is a procedure so he could wear his "suit".

Tristans physical therapist name is Holly, and she is really sweet. Her aide is Erin, and Tristan really likes her because shes a pretty blonde :o)

His therapy today then began at noon, and he got some good stretching in his legs, followed by a massage. He did pretty good. He was a little fussy, because in all the excitement Tristan decided to wake up at 7:30 this morning, and everyone knows that we are not morning people! Sooo he was tired when we got there.

He then went in the suit, it was pretty neat. It is a head to toe "stretchy" suit with a bunch of little yellow bungee cords, that connect somehow between his shoulders and his feet.

He did really good in the suit, towards the end he started crying though. They worked on alot of head and trunk control ( something we are after up here!) and rolling. He was sitting on a big "yoga" ball, and also rolling from side to side.

Overall Tristan did great. He held his head up for a little over 4 minutes in the suit, which is really EXCITING for him! He is taking a nap now, its been a long day!

WE ARE HERE!!!!

We made it!

Just letting everyone know that we arrived safely in Pontiac this evening, and I think we are all ready to go for Tristans big day tomorrow.
Tristan did great on the car ride up, it was a 4 hour drive, so it was not tooo bad.
Just want to thank everyone again for helping us get to where we are today. With all your help and prayers this trip for Tristan would not be possible.
Also, please be sure to sign up to blogspot.. so we can see who is looking at this web page, and be sure to leave Tristan LOTS of comments! He gets so excited to hear what people have to say to him!
Keep in touch for the next two weeks, I will be sure to post everyday with pictures and hopefully some video clips so everyone @ home can watch their little angel!
Thanks again!

Welcome!

hello!
We are going to also be using this website while Tristan is in Michigan for his Euro-Peds adventure!
I can leave pictures and video of Tristan's Journey with Euro-Peds and will continue to use it for all future updates, fundraising and milestones with Tristan!
We will be leaving Sunday Aug.23 - Sept 3rd... but will be coming home on the weekend in between.
I am excited, nervous, anxious, and a little scared about the trip. I know it will be good for Tristan, and I continue to hear great stories from other families who have gone to Euro-Peds, so we are keeping our fingers crossed that everything will go nice and smooth!
Please, continue to check out Tristan's new blog spot, and you can also visit.. http://www.europeds.org/ to see our adventure coming!
Also, for those of you who do not know, Tristan's whole life story can be visited at http://www.carepages.com/ all you need to do is make a sign in name and password, and then type Tristanmichaelbowling ( NO SPACES!!) and you will become a member of his sight, and can also read updates and various postings on there!
Thank you for everyone who has supported us with this long journey of helping us raise the money to attend Euro-Peds for Tristan. Chris, Tristan and I are soo lucky to have such a large support group of people who truely love us, and want the best for Tristan possible!
Any questions, give me a call or email me at CRentz3@yahoo.com