Baccloffen is doing great!

updates!
Hope everyone had a great holiday. I know we sure did. Glad its over.
Tristan cracked me up when it came to Santa this year. He saw him 3 different times. First time he cried, second time he did good and then cried when we walked away, 3rd time he cried again but laughed everytime someone sat on Santas lap. LOL he was too funny!
Okay, update on surgery.
Tristan will be having surgery on Monday Feb 21st in Cinci. After seeing the surgeon we found out that his hip is not as bad as the other doc made it to be. But in order to keep his hip from being pulled out of socket and to help with his walking skills, spacisity and more Tristan will be having a "soft tissue release" done. This is when they go in and snip his adductor and his hamstring muscles in his leg. They may do more depending on how his body relaxes when he is under anethesia. After this surgery Tristan will be in full leg casts on both legs for 6 weeks! yikes! So this will give him plenty of bonding time with his new dog!
We literally go from 4paws training for 10 days, home for a week, then to cinci for surgery! Febuary is going to be a VERY busy and crazy month for us.
As of right now we are still looking into having his "spit glands" removed this summer as well. Tristan has to undergo some more tests first... I will keep yall updated on that one.
The bacclofen is doing wonders on his spacisity. His arms, hands, and legs are much more relaxed now. Since starting this med, we have seen big improvements in his reaching and walking. His therapists are pretty happy with it! I have him on the lowest dose right now, no need to increase it in my eyes if it is working at this level. As he grows and his body gets use to the bacclofen we will have to increase it. Until then, everyone is happy with where it is!
Currently, Tristan is battling Croop. Lil guy always gets some crazy respirtory bug this time of year. Started on antibiotics and steriods today. So he should be feeling better in time to return to school next week.
We should get his 4paws dog match in less than 30 days! SUPER EXCITED! I will have my phone glued to me more than ever towards the end of January waiting for Tristans special emial from his dog! and i promise to post on here AS SOON as i know!
Thank you everyone for the continued prayers and support. If you are still wanting to help Tristan with his dog, we could use some gift cards to petsmart so he can buy his new pal everything he will need!!

just adding more pics!

mommy and tman at newport

older pic, but a fav.. go buckeyes!

I JUST WANNA EAT HIM UP!!

IS THIS WEEK OVER YET!!!!

Summer fun at the zoo

Daddy and Tman in the lake

Mommy and Tristan

I PICK THIS PUMPKIN MOM!

What a week its been and its only Wednesday!
Lets see, where to catch up.... lets start..
Monday we got a phone call from neurology about Tristan's last set of blood work done. His seizure med levels came back good. But his red blood cell count is off. Tristan has now been diagnosed with microsytic anemia. Which means his red blood cells are smaller than they should be. That they havent been "growing" with his body. So now we are going to start him on an iron vitamin and redo this blood works in a few months and fingers crossed it works!
Today, we saw Dr. Vargus-Adams in Cinci who has been following Tristan for about a a year and a half now. She is a Cerebral Palsy doctor. The first words out of her mouth was about Tristan's last hip xray. We have been doing routine hip xrays for the past few years as well. His left hip has always been "not right" and today we found out that its pretty dang close to being dislocated! AHH! So long story short, we will be seeing one of the favored and top orthopedic surgeons in Cinci in the next week hopefully, and Tristan will def be having his first surgery sometime before Christmas to get his hip fixed. I will let ya know how that appt goes and when surgery will be. :( Because of his spacisity in his legs we started him on Bacclofen tonight. This is a med that will help reduce his spacisity in his legs and the rest of his body. This is to help his muscles to stop pulling on his hips. My plan is to get him off this med after he has surgery. With this med we do run the risks of having seizures. So fingers crossed we dont!
Good news! Tristan weighed in a lil over 30lbs today! So he is finally putting some weight on again. And he finally got his flu shot, so I dont have to worry about that now! We are also going to see a new Hollistic Health team at Cinci Childrens this friday. So hopefully no more bad news this week from that. He will also be receiving a deep tissue massage, poor kid really needs it, and so does mommy! lol
Tristans seizures are still sticking around ( I think) he had his last episode a few weeks ago. Its just so hard to read his actions sometimes if they are seizures or not. Especially sense his seizures normally come in clusters and not just one. But the kid likes to keep us on our toes so you just never know! His 4paws dog can not come soon enough!
Otherwise, Tristan has been doing great. He is getting better with his new communication device. Which we are really hoping to start taking to school for him soon. He is getting the concept of activating the switch to make his "talker" talk to get what he wants. He is getting stronger everyday. I love hearing his therapist praise him for doing so well, and amazed at what he is doing :) its the best feeling for both Tristan and I.
Once again, Tristan will be receiving his 4paws seizure alert/mobility dog FEB 1st! We will be in training with tristan and the dog from the 1st till the 11th. wahoo!
Well<> I am going to work on getting new pics up, so enjoy! feel free to email us anytime! CRentz3@yahoo.com
Thanks everyone for your thoughts and prayers!

Back in school!

After taking a week off school, hes back!
Poor guy already caught his first "bug" of the school year. He just had some sinus stuff going on and was running a fever, still dont know exactly what it was but a lil bit of antibiotics helped!
This weekend and next week we are starting our last "step" for the dog. We have to send in a HUGE video of whats it is like to be in Tristan's shoes. ( I could never imagine) But we will be taping tristan thru therapies, school, around the house, bedtime and morning routines (which we dont have!) and so much more! Its going to be a big project, who knows, maybe we will just turn it into a documentry!
Otherwise<> I think all is going well. I am getting ready to switch some of Tristan's docs around and move him to Cinci Childrens for GI,ortho, and I think we might look into Cinci's new Hollistic Doctor.. would be interesting to see what they have to say.
Tristan is doing great, hes almost 29lbs now and 39 inches tall... Less than 22 more inches and he will be taller than mommy! ahh!

DOG IN FEBRUARY

Thats righT! Tristan's Dream Team will come true and meet for the first time on Feb1st 2011! We will be training with the dog in Xenia from the 1st till the 11th!
We are getting ready to start working on Tristan's video to send to his dog. 4paws requires us to make a HUGE video of the "life of tristan" its going to be alot of work, but that is one of the KEY essentials in training the dog for Tristan.
Thank you to everyone who helped make the Dream Team come true. From the Notre Dame Alumni Assoc who donated over $3,000, to Olive Garden donating all the Spaghetti fixens again, and cant forget the Legion in Tipp City for hosting a wonderful Friend Chicken Dinner for Tristan. Also everyone who donated, helped, prayed, and for dealing with me to make this Dream Team come true. I love knowing that so many people were apart of making this happen for our son, and many of these people we do not know.
It is my new goal to make an update on here at least once a week now, so i hope you guys are reading!
Tristan has begun to have seizures again. We are unsure why. :o(
More updates to come, I have some stuff I have to get done real quick while he is sleeping, and I know I need to go to bed myself!
THanks again everyone!

Fundraising and 4Paws

WOOO! We have had a crazy past few weeks.
Tristan's fundraising is going great for his Dream Team!
We had our Olive Garden Family Fun Night last weekend. We def brought in over 200 people! It was great. The best part of it was, is that I didnt know most of the people there. Therefore alot of the people there didnt even know Tristan, but know of him and wanted to help! We even had complete strangers come, who read about the Dream Team in the local newspapers and wanted to support us. It is so great to know there are still so many amazing people in the world. I believe we are close to $9,500.00. We are so close! Our next fundraiser will be held at the American Legion in Tipp City on Friday, Aug.6th. I believe it starts at 6pm. They are hosting a chicken dinner for Tristan, and tickets are $7.00 at the door. Its first come, first serve, so come early!
Special Thanks to Olive Garden again sponsoring Tristan. They just love him to pieces up there! ( but who doesnt!).
We have settled into our new house. It is so nice not to have the stairs anymore. Everything on one level, and Tristan has his OWN sensory/therapy room.
Therapies are going well. We found out insurance is going to pay for oNE of his "special" carseats, so I am hoping Family Home Services will pay for the 2nd. With Chris and I's schedule, Tristan has to have 2 of them. Fingers crossed!
All in all Tristan is doing well. He is growing like crazy! He is so tall now. Everything is pretty much the same with him, so thats a good thing, right?
Also, heads up, after we get Tristan's service dog we are planning on having a Graduation Party for them at our house. SO everyone can come out and meet our soon to be new family member. I can not wait to find out what class we will be in to bring the Dream Team home! I am hoping to have all his money raised here in August, and fingers crossed we will make it in the Jan or Feb class of 2011!

new stuff!

Tristan in the walking contraption today!

URS Regatta.. Tristan loves his ducks!

So much has been going on. We are still currently fundraising for Tristan's 4paws dog. Hoping to have the all the money by the end of summer. Tristan has been doing well. Hes getting so big, really he is. He's enjoying his summer vacation from school also. Though currently he is still waking up by 9am on his school schedule! ahh!
Yesterday we got to bring home his communication device. Its a Vantage Light. Its pretty freaking awesome. We are having problems with insurance getting the pancake switch for him to use with it so HE can activate it by scanning. We are currently using it as a touch screen but still trying to figure out how it works.
Today, he got fitted for a KidWalk gait trainer (walker) contraption. It was pretty neat to see him stand so tall in it, and actually take stpes. I believe we will be getting one of those ordered here soon.
We are also working on gettin gTristan 2 special careseats. The "baby" ones are just not working for him as well anymore. Also, for everyone on facebook, please contact me on there if you have not, I update everyday on how tristan is doing.
Thaks to everyone for the continued prayers for him. He has come so far in the past year its crazy!
hope to see everone soon at all of our next fundraisers. WE have a garage sale this coming week at mike and shirleys.
June 25,26,27 we are doing an Antiquites fundraiers. These are old timey pics that are AMAZING! for 10.00 you get a 10x13 pic and 8 note cards! let me know if your interested.
We will also be holding a Olive Garden Family Fun night on July 24th at St. Pauls in Englewood. Let me know if you are interested!
Enjoy all the pics!

He's almost 4!

Tristan eatin his mcdonalds cheeseburger. He got that up to his mouth all by himself! Watchin TV and eating, hes sucha man!

You can kinda see his new communication device in this pic. This is the one at therapy
Tristan's bracelets. $3.00 a piece

He loves to wear all his daddy's hats!

WOw! 2 updates so far this month, I am on a roll right? lol
Tristan is doing well. He is back in school finally. He loves school. Its cute because a few of the kids call him George, because of Tristan's love for Curious George at school. His aide began to nickname him George, and the kids have caught on. So now when Tristan leaves a few of the kids say "BYE GEORGE!"
In his augmentative communication therapy, we have officially ordered a communication device. It is a Vantage Light. Its pretty cool. Tristan can activate it with a pancake switch, or its a touch screen for when he gets better control of his hands. He has mastered the eating section of the device, so it is always saying, "I want to eat" and he just laughs. I sware I think his therapist thinks I dont feed him!
Tristan's 4th bday is coming up! I cant believe it. We are having his bday party May 23rd (Sunday) at Golden Gate park in Brookville around 6pm I think. I will get invites out soon. BUT instead of gifts for his bday ( because he doesnt need ANYTHING!) we are asking for money for his dog, or anything to go with him and his dog. Anything from gcards to vets, pet stores, leashes, bowls, or even puppy picture frames. Please no gifts of toys or clothes for Tristan.
Really I think thats all that is new. Still staying very busy with his therapies and doc appts. I have also started a Cerebral Palsy Support Group in the Miami Valley area. This will be a great resource for Tristan and I. If your interested in being apart or know anyone that is please let me know! So far I got 7 other families! wahoo!
Tristan is still having trouble with all his drool/saliva. I am just so unsure what I wanna do about this. Waiting to go back to an ENT in Cinci for it.
I am also working on fundraisers to help with the cost of the 4paws dog. I will def give out more info as I finalize my plans. Thank you everyone for your support and helping make Tristan's Dream Team begin.

Update!

Hello!
Well since the last time we posted, we have decided to get Tristan a seizure/mobility dog. It is actually called a multi-purpose dog. We are in contract with 4paws for abilities out of xenia, ohio. The cost of the dog that we have to pay is $13,000! I know we can do it though. Tristan has such a great support system.
I have also taken Tristan off of his Robinol medication. He was on it for drooling. After talking with Tristan's Pulmonologist in Dayton who was rather upset that Tristan was on it decided to take him off it instantly. He told us that Robinol could have been a reason for Tristan last seizure. That Robinol is in controversy with Epileptic kids. I was soo mad I was ready to kick the wall in the office. WHY WOULD A DOCTOR GIVE A CHILD WHO HAS HAD ALMOST 10,000 SEIZURES A MED LIKE THAT!!??? and not tell me a damn thing about it! ohh dont get me started. There is no other medication that we can do for his drooling because they are all in the same "family" as the Robinol. So now we are looking into an surgical procedure to tye off Tristan's salivary glands. This will help him not drool like he is. Its not a problem that he is drooling, but he is choking on it. He coughs from his drool and sometimes I think he aspirates it. So we have to do something about this. I will post when I know for sure.
ANyway. We are still trying to get a house. We are currently lookin at one in Huber Heights. We have a bid in, so fingers crossed we should know this week if we get Tristan his first house! And we will have a therapy room! awesome!
Otherwise all is well in our crazy busy life!

Seizures again...

A day at Newport with Mommy and Grandma Cindy

Tristan and his wheels!

Finally an update.
Tristan had 2 more seizures last Thursday morning. We woke up, and he went right into a seizure. It was between a petit-mal and status epilepticus seizure. Meaning it was longer than a few minutes but didnt last a full 30. His seizure was 12 minutes in length. He is unresponsive during these and begins to turn a light shade of blue. During this time I was home alone because Chris had already left for work. Sooo I brought Tristan down stairs and layed him on the couch because I needed a phone. Called Chris. Then called the on call neurologist in Cinci, and gave Tristan his diastat. The doc told us to call the squad and call as soon as we get to Dayton Children's ER. SOo thats what we did! Poor Tristan. As he came out of the long seizure, he cried and went back into another one for about 30 seconds.
Got to the hospital, and he was postdictal. Within about an hour he started acting normal again. They did bloodwork, and his depakote level was low. We ironically had an appt with his neuro in Cinci the next day.
I love Dr. Arthur. He talked to us for an hour about everything. We mutually decided to keep Tristans meds the same, just up the doses. Soo thats where we are! So far so good. He also got an EEG, which came back a mess. Tristan is now showing "seizure spikes" in the left and right cerebal cortex. Which is why we are having 2 different types of seizures now, coming from 2 sides of his brain. We get blood work next friday to check his med levels, and we will go from there.
SOo we have since decided that we are getting Tristan a seizure dog from 4paws in Xenia. We are doing this because I am wondering if Tristan is having seizures and we are not knowing about it. The only reason I knew about the one Thursday is because I was in bed with him. If I hadnt' been in bed with him, I dont wanna know what could have happened! This dog with also be trained as a mobility dog. We are SUPER excited. I am just waiting to hear back from 4paws. So fundraisers here we come, this could be up to a $14,000 dog I think. But it is gonna be so worth it, so start saving your pennys!
Since my last post, we have gotten Tristan's newest hip xray results. They didnt come back like I would have liked. His hips are now 40% interfaced ( i think thats the right word). It is his left hip causing this, due to the high tone in his legs. They said the right hip looked good, but want another xray in June. So Dr. Vargus-Adams wants to start him on bacclofen. We havent started it yet, because I am still unsure about this drug. Its just such a heavy drug and it could make him a giant noodle. :o(
Otherwise I think that is really it. He is keeping us super busy. He is still doing therapy 3 times a week at URS, and therapy at school when he is there. He has gained 3 pounds since August. We are now up to btween 27-28pds depending on what scale he is on. Tristan is also 37.5 inches tall now. He is growing up. Tristan will be 4 in May :o(
The craziest thing about Tristan and all his recent seizure activity is that they are occuring on large sporting event days. Everyone knows how much Tristan loves his sports. His last 2 seizures were during Superbowl 2009, and superbowl 2010. Thursday was the start of March Madness. Its crazy, outta 365 days a year, these are the days they are occuring. Is that by chance or related? you tell me!
ALso, if you have a facebook, look me up. I do daily Tristan updates on there. I might end up making him his own facebook page as well.
Well thanks everyone and keep the thoughts and prayers coming his way.

wahoo

Figured out how to update tristans blog from my blackberry! Wahoo, stay posted cuz now I can update sooner and more frequent!lots to update on, coming soon! Thanx!

And a Day full of seizures

family pic at Clifton Mills in December.

Look at those lights Tristan!

I think I jinxed it! I hadnt posted on here in months. Bragging about how we hit our one year seizure mark, and in the early hours this morning it began. Tristan woke up about 3am just screaming. Nothing would soothe him. We stayed awake till about 6am. Slept for an hour and woke up and he did some funny "jerks". He kept doing them throughout the morning. Seizures! He had about 15 seizures in a few hours. After he would have one of his sudden seizures he would cry. It was a cry like he knew something wasn't right. Poor guy. I called the neurologist on call in Cinci and they said to give him the diastat. This is a heavy duty rectal seizure med that we have never had to use but have had on hand for the past year. I was in tears giving this to him. Couldnt believe we were going through this again. After the diastat he became very drowsy. (as to be expected.) We took a nap about 2:30ish and he woke up an hour later and didn't have a seizure the rest of the evening. Mamal and Papal stopped by which made Tristan very excited. He got a burst of energy for awhile and began to smile again. We took the rest of the evening very easy and he is finally in bed now. Hope he gets some much needed rest tonight.

We have been SEIZURE FREE FOR A YEAR NOW!!!

Wow, Long time no post! Life has been crazy!
Lets see, where to start.
Well, Tristan had a great Christmas! As always he got too much. Got some neat therapy toys and a large nubby peanut ball which is awesome! He also received over $150.00 worth of McDonald's gift cards. This is because every time he has a good day in therapy with little or no tears I take him to get a Sweet Tea. The boy loves his sweet tea!
Over Christmas break Tristan had a barium swallow x-ray done ( they watch him swallow this chalky drink under an x-ray) and found out he COULD be microaspirating. We had this test done because Tristan's pulmonologist recommended it due to all the coughing he was still doing since September! For now, we are having to thicken any thin liquids ( water, juice, tea) to a nectar consistency to help prevent aspiration. Though I feel the test they did was not a good one because of how he was sitting, we are re-taking this test the end of March. We will see what they say from there. He is doing good with the thickened beverages. It took him awhile to get use to the new texture at first.
Otherwise Tristan is doing great. He has been back to preschool. He is loving it. He has a whole class full of "new girlfriends". I never knew my little boy would be such a ladies man!
We are still doing therapy all the time it seems. We are going to Cincinnatii still to see Mrs. Beth for a computer game/recreational therapy. She is also helping us to get Tristan's stroller where it needs to be for him.
His therapies at URS are going great as well. He is doing an ESTEM therapy now with Bobbi. She places 4 electrodes ( 2 on each calf) that send electrical impulses into Tristan's leg muscles. This helps his feet to be flat while he is walking and standing. This also helps knock out some of his tone and aides in him using the "right" muscles for these tasks. Its really neat! We are actually going to be getting a home unit here in the next week or so. ESTEM makes such a difference with Tristan's legs once a week, I can not wait to see how much it helps getting to use it at home as well. Tristan has also been working on a walker/gait trainer with Bobbi. He is doing a great job. He made it across the therapy gym a few weeks ago ( with help) because Mrs. Bobbi said he could have some icecream if he made it all the way! His little legs were shaking by the time he made it across but he did it! + got his icecream!
We are still doing hydrotherapy as well ( in the pool). We also started with Mrs. Annie, she is an Augmentative Communication Therapist at URS. She has been working with Tristan and switches. We have begun the process of looking at different communication devices for Tristan. We should be ordering one in the next few months! Tristan continues to have therapy at URS 3 days a week, therapy at school 3 days a week, and then going down to Cinci. He is staying very busy but you can see the improvements in him weekly.
He is now holding his head up better and for longer periods of time. He is tolerating being in the prone (belly) position longer also. He has also learned how to push a ball around on a table or bench. He has become much more vocal. Tristan is doing great. Tristan is a little miracle, and with the struggles of daily life he still always has the biggest smile and love for everyone. Keep praying for him to stay healthy and keep getting stronger.
Also! I have so many new pictures to post on here but I can not find my camera at the moment! As soon as I do I will post them. I am also going to work better to keep this updated at least once a week. Be sure to save it as a favorite or sign up to receive an email everytime I update!