So much has happened...

Let's start with the best for Ty... he's officially in High School!!!! I'm not sure if 'school' is considered "best" to him, but he's a freshman!!! Can you tell this aunt is pretty excited about that??? Of course, I keep reminding myself "just because he's getting older doesn't mean I am".

Now, before people start thinking "Oh he's at school" please don't misread. He's IN school, because it's kind of the law that he has to be doing school of some kind... but he's "home bound" still. THAT, however, doesn't stop us from being so proud of ALL the accomplishments he's achieved over the past few months.

Let's recap (since I've been silent for 3 months, ok 4)... The fundraisers for the Wheelchair Accessible Van brought in the perfect amount... and Kristie is now the proud driver of a minivan, fully customized to Tyler's needs. Ty said goodbye to the manual, basic wheelchair and HEY THERE to a power chair. (I am jealous, I do believe I should be allowed rides!) Tyler was, also, given a new computer (Alienware) for his gaming and software development pursuits... that kid (can I still call him that?) loves his games. He's taken a bath (for other OI families who have gone through some of the circumstances Ty has, you understand the joy of that moment), and gotten out of the house! I'll have pictures in my next post (I will TRY to post more regularly) as well as some texts, updates, emails, etc from Ty's mom/doctors to give ya'll more of a feel for the past few months!!!

I'm sorry for the silence... sometimes we get so caught up in the fact that he's doing good that we forget to update people who still think he's in the same shape!!! I will try my best not to do that anymore! I want to share not only the negatives but the positives as well!!!!

Stay tuned, because in the name of Jesus there will be so many more positives to come!!!!

Silence...

I am so very sorry for not updating as often as I had hoped. I have been working overtime and extra jobs lately so I haven't had time to sit down and compile all the information that I want to update everyone with... and I'm still not able to do that with this post.

However, I do have a few quick updates (kinda like a preview of what's to come) about the different Project:Tyler fundraising opportunities coming locally.

A garage sale on Saturday brought in over $1400.00 and all finances raised go to the Van fund. (to purchase a wheel chair accessible van for Tyler)

Another garage sale will be held this weekend! If you're within the Lafayette area and wish to donate anything (tax receipts will be available to those who need it) for the garage sale please email projecttyleroi@gmail.com with information and we can discuss pick up.

Also, there is a RAFFLE locally for Project:Tyler Van Fund. $1 per ticket for the chance to win $200... all proceeds go to the Van fund!

I have a meeting this week to discuss a benefit for Project:Tyler and I will update with how that is coming along.

Furthermore, the media project (which is how Project:Tyler started and my own little pet project) is still taking some work but I am hopeful that soon I will have a media team willing to donate their time to recording this short film for Tyler!!! I'll keep everyone updated on that and will give more details in the upcoming blog post.

Look for the next update as it will have more from Kristie, Tyler && finally some pictures from Ty's recent x-rays as well as more information on all the Projects for Tyler!!! If you have any ideas of fundraisers and/or fun ways to help raise awareness, PLEASE MESSAGE me at projecttyleroi@gmail.com. ANY and ALL ideas are very welcome!!!

Also, coming soon!!! The links to the other Project:Tyler social sites!!! Thanks for the time!

Wishbone Day...

So today was my "All the Single Ladies" Pool Party (a group from church made up of, you guessed it, a lot of single ladies) and it just so happened to fall on May 6th - WISHBONE DAY! The day set aside to raise awareness for all people living with or dying from OI (osteogenesis imperfecta) by wearing YELLOW!!! I am proud to share our pictures and so proud of my friends for coming in YELLOW today, from flip-flops to jewelry to even posing with our "Wishbone Cupcake" for those who didn't know to wear yellow... they made me smile in their support!!! They would've made Tyler smile, too! (on a side note, NOT ONE of these ladies have EVER met Tyler and all of them claimed to have no knowledge of Osteogenesis Imperfecta before reading my posts and/or showing up today so their support meant all that much more!)

So here are a few pictures of us today with our YELLOW... Tyler (And Brad- his dad- too) THIS WAS IN HONOR OF YOU GUYS!!! For your strength, your ability to keep going, and your endurance... we proudly wore YELLOW today!!! It was the absolute least we could do!

[Annie with the Wishbone Cupcake]

[Colleen proudly sporting YELLOW in the form of LSU bikini and YELLOW nose with the Wishbone Cupcake!]

[Lanie with her YELLOW earrings && The Wishbone Cupcake]

[Laurie with her YELLOW earrings && the Wishbone Cupcake... notice that cupcake gets around!]

[My mom (Ty's Grandmother) wearing her YELLOW shirt && The Wishbone Cupcake - she started off the Cupcake's Journey]

[Paige wearing her YELLOW top with the Wishbone Cupcake]

So that was our YELLOW fest with the cupcake... My mom started the Wishbone Cupcake's journey in the kitchen, then I took a pic with it, then Paige, Lanie, Annie, Laurie, & Colleen before the "Wishbone Cupcake married the Garbage Can" - we truly hope they have a happy life together as none of us wanted to eat it after being passed to so many different people! haha

However, the Wishbone pride didn't end (or begin) there... My amazing friend Mande (who isn't a SINGLE LADY therefore wasn't at the pool party) sent me some pictures of her for Wishbone Day!!! She's out of state visiting family so she's representing Wishbone Day elsewhere!!! 

[Mande with that oh so fabulous YELLOW hat]

[Mande's YELLOW nails - I copied off her a little with mine (below)]

[My nails... didn't want full on YELLOW so when I saw Mande's design I figured I'd get a design, too!]

[My toes even joined in the YELLOW fun!]

Oh I forgot...

[Me in my YELLOW LSU bow (LSU for my brother in law who LOVES the Tigers and all the boys with OI - sports), YELLOW infant bow bracelet (for all infants with OI), YELLOW dress (for all girls with OI), YELLOW shoes (For Ty who was told he might not walk again), YELLOW toe nails because it just wouldn't be complete without them... and the Wishbone Cupcake, of course!]

By the way, my nephew (the oldest - Johnny) informed me that I looked like an "African Preacher" in my yellow attire. My sister replied with I looked "like a yellow Goddess". And my mother says I looked like a Banana. I thought I looked like a Yellow Blimp... so apparently I was a "Yellow African Preaching Banana Blimp Goddess".

Anyone who wore yellow and wants to be posted on here as showing your support in raising awareness on this WISHBONE DAY for OI, message projecttyleroi@gmail.com with your pic and any info you want listed... I'll be happy to post!!!

 

New Projects for Tyler...

but not through Project:Tyler. I figured I'd update on the many people who have come forth to help Ty's road to recovery be a little more bearable.

First, there's a non-profit organization that is helping to provide all the medical needs that Medicaid will not pay for. THAT is a huge blessing for Ty's family!!!

Second, my aunt is starting a fund to raise money to buy an Alienware laptop for Tyler so he can further his gaming as well  as his interest in Video Game Software design.

Tyler may be in bad shape, but he's got people on his side that are trying to help!!! Thanks to everyone who has volunteered help in ANY WAY! It means so much!!!

Also, we're hoping to have a Project:Tyler logo soon!!! More to come on that!!!

Upcoming!!!

The new Project:Tyler social sites!!!
We will have:

1.  Project:Tyler FaceBook page, operated by Monique Stelly and Danielle Kelehan.
2.  Project:Tyler Twitter page, operated by Harlow Aguilar
3.  Project:Tyler Tumblr page, operated by Amanda Romano

Looking forward to the new sites and all the awareness they will raise for not only Project: Tyler but also other OI families as well as Wishbone Day!!!

More on these social sites (and their operators) to come... stay tuned!!!

Sorry for the silence

So because I have been silent for 10 days, that means this will probably be a very long (BUT INFORMATIVE) post!

Let's quickly start where I last left off on SURGERY DAY... Surgery got delayed!

Kristie on April 20, 2012 at 1:51 pm
"Still waiting to be brought back for surgery:( surgery is backed up today"

Kristie on April 20, 2012 at 2:56 pm
"Surgery is not today! I'm kinda frustrated:( doctor just had too many before Tyler and he doesn't feel like he is physically able to do Tyler's. Doctor hasn't come in yet to talk to us so we don't know if we are waiting until Monday or not"

Kristie on April 20, 2012 at 9:04 pm
"Surgery tomorrow at 9am!!!! Can't wait!!!!:)"

Kristie on April 21, 2012 at 6:40 am
"Today is the day; Lord, please guide the doctors hands and give him Wisdom that only You can give; let him know exactly what needs to be done and be with Tyler.. Strengthen his body and I thank you ahead of time for the healing that will take place and speedy recovery. Amen! Believe with us for a good outcome:)"

Kristie on April 21, 2012 at 10:04 am
"Surgery delayed but hopefully taking him soon"

Kristie on April 21, 2012 at 11:31 am
"We are in surgery holding!!!"

Kristie on April 21, 2012 at 11:52 am
"They just took him!!!!:)"

Kristie on April 21, 2012 at 12:14 pm
"Well they took him and doctor said he is hoping to be able to put rods in both of his tibial as well to be able to give him some extra strength in his lower extremities. That would be awesome! Surgery will be very long and very extensive. Tyler was ready though! He says that is the best sleep he ever has:)"

Kristie on April 21, 2012 at 1:57 pm
"Surgery room just called, left leg done, going on to right one! All going well!"

Kristie on April 21, 2012 at 3:53 pm
"Other leg done! Now onto the arm!!:)"

Kristie on April 21, 2012 at 5:30 pm
"Right arm done, they are just finishing surgery up now!! Nurses say Tyler is doing good!"

Kristie on April 21, 2012 at 6:12 pm
"Surgery all done!!! Good news is they were able to put the rods in both tibias and rod in the arm with some screws! Looks like he will have more bend to elbow than they originally thought which is awesome News! Going to icu tonight with a PCA pump to control his pain.. Overall a succes! Thank you Jesus!"

Kristie on April 21, 2012 at 7:28 pm
"Prayers needed because we have one aggravated, grumpy kiddo:("

Kristie on April 21, 2012 at 8:08 pm
"I am so unbelievably proud of my Son, Johnny and the LHS small vocal choir! They took first place in the national competition and walked away with 7 first place awards including best choir!!!! Woohoo!!!! Go LHS!!!" - CONGRATS JOHNNY!!!


So Tyler's surgery day came and the doctor was pleased with the outcome! As you can tell from the time span, the surgery was a lengthy one but no complications, PRAISE GOD! Ty was hooked to 100% oxygen to keep him breathing normally... first started with the mask then the nose line then he moved to breathing treatments. Updates from Mom below...


Kristie on April 22, 2012 at 8:03 am
"We had an ok night; irritability still there unfortunately. He did sleep for about an hour at a time and didn't seem to press his pain button too often. Maybe a couple of times
Per hour; right now trying to monitor his respiration rate, it's elevated when he goes into a deeper sleep. They did say he could eat today and he has kept down 3 sprites. He has numbness in his right hand but i think that's normal, we will talk with doc about it when he comes. As for myself, I'm just tired!"

Kristie on April 22, 2012 at 3:55 pm
"I'm tired:( yes I have been trying to rest... Ty will prolly be in icu for another day or so.. Doctor is not rushing anything, he is still agitated and they are trying to keep him Comfortable"

Kristie on April 22, 2012 at 9:00 pm
"So glad that my oldest son is home:) now our family feels complete again! Ty's day has been rough, praying tomorrow is a better day"

Kristie on April 22, 2012 at 3:09 pm
"Another long night... the doctor prepared us for a few really rough days. Just praying him through it."

Kristie on April 23, 2012 at 1:16 pm
"I haven't posted in a while so I figured I would give an update on Tyler; we are still in ICU but today he has been fever free(yesterday he ran a temp all day), still on a morphine pump and Valium every 4 hours, along with antibiotics and he gets a breathing treatment every 6 hours to prevent pneumonia. He doesn't seem as agitated today which is a great thing! Still in a lot of pain but they are keeping him comfortable:) wish I could say yes I am getting a lot of rest but I'm not:) it's ok, we moms can get by on less sleep than most! Thanks for all the prayers and keep them coming"

Kristie on April 23, 2012 at 8:54 pm
"Well good news is this is our last night in ICU, we are moving to regular room tomorrow:)"

Kristie on April 24, 2012 at 10:27 am
"Rolling out of ICU this morning into regular room!! So excited; still on PCA pump and other meds but still making progress!"

Kristie on April 24, 2012 at 8:14 pm
"Ok so moving into our regular room just means we are going to be here for a while:( doctor considered putting him in a short term stay facility but he trusts us to take care of him; however he wants him to recover as much in the hospital as possible, because at least I would have help. Oh and sheet changing= NIGHTMARE of an experience!!!!"

Kristie on April 25, 2012 at 7:50 am
"Hoping Tyler gets the air mattress today because we noticed an area last night on his left thigh that has a bruise and nurse said that is how bed sores start:( praying hard that it does not happen and that there isn't anymore where we cant see yet. Prayer warriors, please pray with me:) thanks!"

Kristie on April 25, 2012 at 1:48 pm
"Good news: dr seems to think the bruising is not bed sore but just bruising from tourniquet!! Thank you, lord!"

Kristie on April 27, 2012 at 12:27 am
"IV having to be changed for the 4th time at midnight is no fun and they can't seem to find one:(" <-one being a vein... Ty has "rolling veins" and he's already blown a few veins while at the hospital)

Kristie on April 27, 2012 at 7:14 am
"Ok update, they could not find a vein:( so he is on oral meds now! Talk about sudden change of events!"

Kristie on April 27, 2012 at 9:25 am
"Today seems Like a much better day!!! He even ate a half of a biscuit for breakfast! Most he's eaten since Sunday!"

Kristie on April 27, 2012 at 3:38 pm
"Look whose sitting up today;)"

 

Yes that is considered sitting up!

Kristie on April 29, 2012 at 10:43 am

"May 6th! Celebrate wishbone day with us:)"

Kristie on April 29, 2012 at 7:17 pm

"Well it's been quite a challenging 13 days BUT it looks like we might get to go home tomorrow!!!!! Yay!!! If the medical supply company can get all the supplies to house tomorrow we are out of here!!!"

Kristie on April 30, 2012 at 12:20 pm

"Medical stuff all delivered!!! Yay!!! Now waiting for the doc to come and say we can go home!!! Thank you Jesus!"

So that's pretty much a recap of Tyler's past days in the hospital. Again, my apologies for the delay... it's been up and down and new information continuously! Tyler has been pretty out of it most days when we drop by to visit but I know he's anxious to get back home!!! Please continue to pray for Ty and his family because now they will be without the hospital staff to help!

Surgery Day

Quick updates from Mom's facebook!

Kristie on April 19, 2012 at 7:25 pm:
"Surgery will be tomorrow afternoon around 1 or 2..pins in ankles and rods in arm"

Kristie on April 20, 2012 at 8:17 am:
"Surgery day!!!! We are ready to be on the road to recovery! He had fever last night but this morning is fever free:) thank you Jesus! Thanks for all the prayers and keep them coming"


So it's surgery day... Kristie texted this morning and said the surgery will probably be at 1 and they will take him around noon. Please pray for Ty as well as the surgical team today. The surgery will last about 4-5 hours, maybe longer depending on the damage when they go in. Steady hands, sturdy minds, and strength for Ty before, during, and after the operation.

Will update later!

Updates from Mom...

Tyler's mom, Kristie, has been updating her facebook pretty regularly for the many people praying for Tyler over the past few days... here they are from the day. (Even one before his break!)

Kristie on Tuesday, April 17, 2012 at 8:51 am -
"Last day of leap testing for Tyler!!!:) AHHH!! That means he is going to high school!! My baby is going to high school!!!!"

Kristie on Tuesday, April 17, 2012 at 10:46 pm -
"Prayers needed tonight! Tyler is in hospital with multiple breaks. While in therapy today, he was standing with assistance and we heard a loud crack. Both ankles broke and his right humerus shattered in several places. Left ankle is displaced; in quite a bit of pain so prayers greatly appreciated!"

Kristie on Wednesday, April 18, 2012 at 7:09 am -
"He had an ok night; when morphine would kick in he would be able to rest; they are giving him morphine and Valium for the muscle spasms"

Kristie on Wednesday, April 18, 2012 at 9:12 am -
"Doctor came in and said that because his bones are so thin, they are going to be putting some pins in the ankles to put them in place and then with the arm because it is so smashed up, they are not sure what they can do and if they can put a rod or not; doctor does not think he will have full use of his arm again and if he will ever be able to stand again. Im trying to be strong and not believe a negative report; Waiting for CT scan right now, pray for no pain, not sure when surgery will be"

Kristie on Wednesday, April 18, 2012 at 10:07 am -
"This is a question for all you OI mamas out there: Have any of your children every experienced a severe mid humerus break where the bone was shattered? If so, what was the course of treatment?"

Kristie on Wednesday, April 18, 2012 at 2:08 pm -
"Surgery won't be today, possibly not until Friday.. Dr will be here later this afternoon to talk to us about CT results. They put catheter and he is able to drink now and will eat for supper; he is comfortable right now"

Kristie on Wednesday, April 18, 2012 at 4:18 pm -
"Tyler had a really good nap:) just had some crackers and powerade; spirit is up and he is ok:) thank you Jesus!"

Kristie on Wednesday, April 18, 2012 at 9:38 pm -
"They had to do CT scan today of his arm to see exactly what was going on; the orthopedic surgeon here at women's has consulted with his regular ortho doctor and a few others. They will do surgery Friday, they will put pins in both ankles and as for the arm, they are all in agreement that they think the best thing is to try and put rod but it won't be an easy surgery because arm is so messed up; actually no doctor wants to even do the surgery because bone is shattered and such poor quality but they will.. I am choosing to believe God for a better report than what they are giving us"

Kristie on Wednesday, April 18, 2012 at 11:58 pm -
"I'm so proud of Johnny! LHS Small vocal ensemble choir is Orlando bound right now!:) they have worked hard and I am so proud Of them! Love you Johnny!!!"    (a reminder that she has 2 sons! Johnny -16- is going to Orlando with his high school choir for competition! Good luck, handsome!)

Kristie on Thursday, April 19, 2012 at 1:24 am -
"We are up at 1:24AM and watching Karate Kid:) you know I love MY kid!!! Lol"

Kristie on Thursday, April 19, 2012 at 7:29 am -
"I have had my moments of being angry and being totally overwhelmed emotionally. Today, I choose to recognize that I am blessed! I have 2 great young men that I am honored to be their mom, the most amazing man that I am honored to be married to for the last 18 years and breath in my lungs and that has only came from the One who created me. No I may not understand what is going on but I HAVE to CHOOSE to believe that He does and He has not left us and He will get us through this!"   (the moment this baby sister starts crying!)

That's all for now... will keep updated as she does!!!

Project: Tyler is back in full force!

First Of all, I want to apologize for my silence. We got so caught up in Ty's progress that I abandoned Project: Tyler and now I can't forgive myself for doing that.

It's 16 months after his fall and we're in a hospital room again. Before we get into the bad, trust me there's plenty of negative, let's discuss Tyler's progress over the past 16 months. In December of 2010, Ty had a bad fall which resulted in the below posts. He amazed us all with his drive and determination to get back on his feet and live life to its fullest.

In late March of 2011, Tyler was able to get out of the house for his first "official outing" to see Red Riding Hood at the movie theatre! He was a still mobile in July when he and I were able to see 'his woman' (Selena Gomez) in Monte Carlo as well as attend the Harry Potter premiere.

He, also, went swimming that summer. That was an interesting ghetto rigged event in which we would dump him from his wheelchair into the water then 4 men would lift him out when he was finished... But it was worth it because for the time he was in the water he was weightless and carefree... And happy!

Then came therapy... Pool therapy, physical therapy and a roller coaster ride of events- some good and some bad. For every step forward, it seemed he'd take a step or 2 back... Till most recently.

His new physical therapist began therapy, preparing Tyler for the next big event in his life... High School! The plan WAS to get him able to become self reliant and self capable to get around public school. He was pretty excited and enthusiastic about his upcoming freshman year!

And then it happened... Tyler stood for the first time in almost 16 months on Tuesday (April 16). Kristie sent us the video (will post soon) and it was great!!! Then when he attempted it again, his ankles cracked.

Both of them.

In an attempt to catch his fall, he shattered his right Humerus (for not so medically smart people such as myself that is the bone above his elbow).

Right now, surgery for his arm and ankles are scheduled for Friday but no doctors want to put in for the surgery because based on the scans and tests, they don't see the outcome being good.

That fact does cause concern and tomorrow we will look into every option available to us in regard to surgeons and the surgery.

However, there is another shadow looming over Tyler right now- taking precedence over the upcoming surgery. The doctors gave Ty the news this morning...

They don't believe he will ever walk again.

We NEED a miracle! He is 14 years old. He is supposed to be able to run, walk, dance at his senior prom, walk up stairs, drive a car. Ty needs prayer!

Prayer is the most important thing. Pray for healing. Pray for peace. Pray for comfort. Pray for Gods guidance during surgery. Just PRAY!

Now more than ever, Project:Tyler needs your help. Ready??? Tyler's wish (to meet Selena Gomez) still hasn't come true, so...

1.) TWEET! Celebrities apparently pay attention to their twitter accounts (look at how KONY2012 blew up). We need to get Project:Tyler trending to get the attention Ty and other OI kids need! If you follow celebrities, simply copy and paste this to each celebrity (individually) if even one retweets, it reaches all their followers!!! "Help make this kids wish come true!!! http://projecttyler.blogspot.com/ #ProjectTyler please help get it trending!!! Retweet please!" (Definitely tweet @selenagomez)

2.) YOUTUBE... Look up any and all Osteogenesis Imperfecta videos and help raise awareness. Post to Facebook, to twitter, blogs, social networking or even tell friends about the vids you watch! These kids need the help and support even if only to know other people care enough to pay attention to the disease that causes them so much pain! We never know who might see a video and have the power to change a life!

3.) Get SELENA'S ATTENTION... whatever way possible! I can't do it on my own, but if 1 person hears me and tells another, then they tell another, and so on and so on then eventually one person will hear who has connections to make Ty's wish come true!

And finally, May 6, 2012 is Wishbone Day, an international day to raise awareness for Osteogenesis Imperfecta. I'm begging, pleading and praying that you will pass this on and encourage others to wear YELLOW on that day! (visit www.wishboneday.com for more information)

Any and all help you can offer is greatly appreciated and above all, please keep Tyler and other OI patients in your prayers!