Prematurity Awareness-2

These tiny babies are not just tiny, they are at high risk for major complications. Do what you can to know the signs and symptoms of preterm delivery and get help. Help those babies make their 40 weeks. 

Prematurity Awareness Month

The month of November is prematurity awareness month. Because it is something that we deal with EVERYDAY we wanted to share again this year, facts and figures and life with prematurity. Although we are playing catch up for the month of October and we have a lot to catch up on, we are happy to post our facts.


Day 1:

Tyler falls into the Extreme Preemie. He was known as a micro preemie. He was under 2 pounds and born in his 25th weeks of gestation. Grayson is a Late Term preemie. He had very little issue with his prematurity minus the few hours in the NICU.

Fact:

Ictal

Before Ty had his big seizure he had been stuttering. It seemed to kind of come and go and I didn't know exactly what was going on. I made a comment to his pediatrician but we had come to the conclusion that it was not a true stutter and so we didn’t make a big deal out of it.

After his seizure it kind took a back burner to real life. Nothing made it worse, but it also didn’t get better either. Every once in a while we would notice it was gone and then it would come back full force.

After his “event” ( aka Our neurologist, that isn’t our neurologist any more, said that she isn’t convinced it was a seizure so we are calling it an event) in June and our EEG that was not awesome we got a second ( before the first) opinion. Dr. Bernes was great. Agreed that we should proceed and figure out what was going on. Get a look at his brain and see where to go from there and what was going on.

Fast forward to the EEG this past week.

We checked in on Tuesday. We were asked to do all we could to just get him to talk to us. I read 35 books. Played a million and one games with him and did all I could to have his stuttering caught on tape. When we were finally able to settle in for the night after a hard game of throw the snacks and dance party, and get some sleep.

Wednesday the Doc on call came in and said that Ty was having interictal activity in his brain. Basically 65 percent of his night is spent in seizure “ interictal” activity. It is effecting his speech. It COULD be effecting his cognitive development but they don’t know. But they need to see if they can get his activity in the night down, but in order to do that they need to sedate him. Like heavily sedate him. Like stick in an IV in case the meds cause respiratory distress, sedation. I was a mess. I am pretty sure that I called Dallas sobbing a few times. And I might or might not have yelled at the poor handsome, skinny pants wearing student. I might or might not have said bad words when the door was shut only to remember they were filming EVERY THING WE DID...And we might or might not have made jokes about bums and crap a few times too. But the tears.. holy CRAP.

I tried to explain to Tyler about an IV. So the nurse sent in the child life specialist and Ty just kind of looked at her.  She was talking to me and asked me if I had a degree or worked with kids because I was really “good” with him. I thought,”um he is an extension of me! Of Course we are good together” But I explained I did have a degree and that it was in child life specialties. She said well you have it covered and left. I was a bit stunned.

The IV class didn’t do much for him. He was one pissed off dude. They missed the first one and got the next one. When we got the meds in him he asked if he could GET OUT OF BED. After 3 stories, me laying with him and then finally telling him he was all done and holding his face, he fell asleep. He was OUT.

I got ready for bed pretty fast after that and was out pretty quick as well but when half the floor comes in because your son is taking off his IV in his sleep AND his oxygen was low low. He was fine and asleep and his mom... she was having a panic attack.

The next morning we got ready to pack our bag. They said no matter what we could go home but it was going to depend WHAT we went home with.

The sedation worked and Ty is now home on a large dose of valium. It has decreased his interictal activity to 35 percent of the night. We have seen a huge improvement.

The downfall:

HE IS AGGRESSIVE. He is calming down a little but he is tired so his sensory processing is far and above what we really are use to. Grayson is dealing with us having to have him passed around and so he lashes out. We are hoping we can get back to a new normal SOON!

CLVE

Clinical Low Vision Evaluation. 

That is what we did the week we were getting better from the Flu. And the truth is, it was NOT very fun and I left feeling so down that I spent part of the evening in my bed crying.

So the CLVE was set up through the Foundation for Blind Children of Arizona. We went to a location that was LOADED with as many snow birds as could fit in one location. They were all trying on canes, and getting equipment and stuff for the Macular degeneration and glaucoma. Instead of books to read, they had CCTV’s available so you could read the magazines that were left on the counter. The wall was filled with AS SEEN ON TV keyboards. It was a blind persons dream.

Ty was totally cool with the CCTV’s and we read a few books we brought with us. I filled out the countless pages of paper work and his vision teacher came to met us. Her name is Jenny. Tyler calls her Jenny the Pirate.

To make sure that Ty was at the top of his participating game, we kept him home from school. He had only gone on Wednesday and Thursday because of the flu. Ty had a low low key day, and he was properly bribed to participate.

So what is a CLVE, well we sure as heck didn’t know. So this is what we learned.

1. Intense background and medical history of the patient. In this case we actually struggled to get our doctors in Utah to provide us with a detail of ANYTHING. They just switched doctors and it was a real struggle so we went off the last detailed list of stuff that I had sent to school. Which in fact, was NOT what I had actually sent to school but lesson learned for me. Keep a better record. 
2. Depth perception, color testing, contrast of color, light sensitivity, ability to process what they see. While that seems like a lot, most can be done in a series of a few tests.  He did really well and they were very hard for him to do. When things get hard for him, he does a few things that signal to me that we are going to meltdown soon. 
3. Eye exam with the big chart. Ty does really well with these. He did what he could and then the sadness and meltdowns came into play. 
4. A lot of the rest of the appointment was what was Tyler like in a school setting, home setting, a situational setting. This is where it gets more and more frustrating for me as the mom. They also talk about future goals, things that will be happening and things that won’t be happening. Things that we can see as progression and things we can see as he gets older and things that we can expect as he gets older. 

The purpose of the CLVE was to get a specific piece of equipment that can go with Tyler throughout school. It will enlarge his papers, allow him to write, and also allows the computer to help him read when his eyes are to tired to continue to do so. Right now, he is minimal things that require long term memory to read, so it isn’t as much of an issue. But later in life, it will be. Especially when chapter books and texts books come into play. For now he needs basics, but he needs something basic and then some. 

Ty will be getting a Davinci CCTV for his class and it should follow him through school at the district. We are pretty impressed with the Davinci and really like it. It has way more features than he needs right this second in time but as he grows older he will need what it has to offer. 

We have found he has a severe sensitivity to light and should be wearing sunglasses, but transition lenses don’t come in his prescription and getting him to willingly change into sunglasses is a joke. And because his vision is crappy even with correction, he fights us to even wear those. 

His eye sight with correction is still really bad. He is known to have about 20/500 vision. That is REALLY bad. The picture below is what he sees even with correction. 

For now we work with Jenny, the pirate, Tyler’s vision teacher. She helps everyone enlarge everything and make sure that it is in the size he needs and how to help him do better. 

Ty doesn’t notice he can’t see, He pretends he can. People don’t realize he can’t see. We are trying to accommodate him in every way possible and to help others adapt to him in whatever way possible. My calling at church is his teacher, which has opened up a dialogue with the Church’s disabilities department to get some better visual impairment products and books. We are also trying to figure out what we can do to provide him with the stuff we need here at home. 

So don’t get to alarmed when he doesn’t know who you are or he wants to touch you or comes up really close. He is super smart and will remember who you are. He is also learning to get to the park on his bike with no help ( of course he won’t ever be able to go without someone following him because he can’t see cars coming down the street!) but he is doing really well navigating in a world that was not meant to be seen in the dark. 

UBP 2010~

Welcome to our blog! We love new people! We LOVE comments too!

So here is our story ( the short version because you can read the FULL story here and here!)

I am Nancy ( YES! CLICK!! I LOVE to take pictures!) and I am the mom to a former 25 week M preemie ( YES he was 15 weeks early!) and the miracle that we blog about. His whole life has been filled with HUNDREDS of medical procedures and 9 brain surgeries ( and we are NOT done yet). Shortly after he was born he had heart surgery to correct his a small heart defect known as a PDA. He suffered from brain bleeds that left him with brain damage and resulting hydrocephalus. He was diagnosed at age 3 with Cerebral Palsy. He has had brain surgery to correct Sagittal Craniosynostosis that was a result from his prematurity, several shunt malfunctions and ROP surgery. His ROP surgery has left him legally blind.

He is amazing! ( and funny!!) Though we still deal and will deal for the rest of our lives we are so proud of him. He does walk. ( And currently walks UNASSISTED!!) He doesn't talk. But he does have some communication that seems to be improving EVERY SINGLE DAY!

While I mostly blog about Tyler we do have other things going on. I am a stay at home mom that uses my blog as an outlet when I am still riding the roller coaster here in "Holland." The Dad is a independent computer program developer and he writes Apps for the app store for Iphone and also for Mac computers like THIS ONE! And THIS ONE! ( which we will be giving away!)

We also have endometriosis which has been causing some infertility issues in our world. We have been trying to add one more to our family for a while. So sometimes the emotions are RAW and not nice!

Please take a look around!

Some of my favorite posts are

• The man at the grocery store
• A birth story ( from his dad)
• Quality of life?
• Left without a voice
• The Eve of my Motherhood

During the week we will be giving away Bows from The Darling Daughter, 2 $15.00 gift certificates from Thoughts on the wall and a copy of Newsprint and some SCENTSY! There might be more so come back OFTEN!!

* For the contests, Please wait for the posts that will be coming up in the next few days!*

* First contest is up!! SIGN UP!!*

Back to Routine

I am so excited to get back to a routine tomorrow. Ty is going back to school. I want to be one of those moms where I love them home all the time but frankly I LOVE him home with me all the time but he gets so bored and really really need the interaction with the other kids. His socially awkward behavior is even worse when he has me FULL time.

Tonight I had my sisters kids over and he was SO tired after all of our activities today that he couldn't handle the stimulation with the other kids. He needs the routine of the other kids.

Today was a good day though and I am sure it was the end result of why we had a few meltdowns. Ty's therapist had a baby so the therapy was canceled so we took a mental health day and we went to the swimming pool. We got there about 10:30 and we didn't leave until almost 1. He was starving and had a food meltdown and then a meltdown for about an hour when we got home. Once he got into a movie I was able to get him to stay un meltdown for a while.

I have been trying to not get upset or angry at him for anything, keeping in mind that it isn't his fault he can't communicate with me. Stepping back and taking a deep breathe and going back into asking him all the things I can to figure out what is wrong.

So back to the grind of heading to school and back to the grind... housework, book, movies and loves..... what a life!

A great Tribute!

For today's post I thought I would direct you to a great article written on Growing your baby.

Ty is such a awesome kiddo! What a great tribute

Micro Preemies and Brain Bleeds

According to the March of Dime 534,000 babies are born premature in the United States each year. Babies born under 35 weeks gestation are considered premature. While the " preemie club" from a medical perspective include larger gestation preemies there seems to be a " sub" club. One that not many are a part of. Each year only 50,000 micro-preemies are born in the United States. A micro-preemie is generally considered to be born under 3 pounds and before 29 weeks gestation.

The later gestation preemies are at risk for delays and other "preemie" issues and it is a good idea as the parent of these later gestation preemies to be aware and be proactive in their development.

Sometimes, the members of the micro preemie club can be pretty harsh and not welcoming to the older gestation preemies. ( I know I am guilty) because as a 5 pound preemie and a 1 pound preemie the issues are far more extreme. Meaning the chance of something being "wrong" is less likely and the chances of US having delays is much greater, the ride of prematurity longer and the effects more lasting we tend to have bitter pants!

Long term preemie issues can be tough and it can also be a lonely place. One of the reasons is because those with Micro preemies do get grouped into the later group and everyone asks "well they are fine now right?" question. Well maybe at 34 weeks our kiddos are good to go and "catch up by 2" but at 25 weeks there are RARELY a preemie that has no lingering effects.

If you are in the Micro preemie club the dreaded words is brain bleed. Dreaded, because no one wants to know that inside their growing babies brain is a bleed, a bleed that causes damage. That bleed will leave your child with an uncertain future.

Brain bleeds are the largest cause for brain damage in a child. It is also the reason behind MANY Cerebral palsy diagnosis. For us, that brain bleed has left us with LOTS of days and weeks and months of an uncertain future.

Tyler was diagnosed at 24 hours old with a grade 3 and 4 IVH. I am not certain on the grade at the very start but the end result was a very very bad hemorrhage. Grade 1 and 2 leave usually no lasting effects and if they are lasting they are very minimal. But grade 3 and 4 touch brain tissues and leave a damaging hole in its path.

His heart defect known as a Patent ductus arteriosis needed to be closed to help regulate the blood pressure in his body. The lower the blood pressure the less pressure on his already damaged brain.

At a small 1 pound 11 ounces and just a few days old Tyler underwent heart surgery. It was a surgery to place a titanium clasp on his defect to help close it off. The surgery was done at his bedside. By the time I walked back to our room and had a little breakfast Dallas was already back telling me that they were done and Tyler did pretty well.

His bleed would be the cause of many heartaches and sadness in the coming years but it would pose many health risks as well. His bleed was the result of his hydrocephalus. Having hydrocephalus and draining out fluid in the NICU was the cause of his Craniosynostosis and now at 4 his hard time walking and cerebral palsy and lack of speech is a direct result from that faithful day we were told he had a brain bleed.

One thing we do know is that we are one of the lucky ones where we did get to see our child walk. While getting all of the information we could in the NICU we were told of the possibility that Tyler would be in a wheelchair. While this is still a possibility ( he doesn't have the greatest ability to be stable all lone or without assistance) it hasn't been the case for Tyler yet. He is doing things that most kids with this degree of damage.

We are very proud of him. "Most" Days he works really hard at therapy. He is wonderful at being a kid. He is generally happy, loving and I love him SO much.

November is Prematurity Awareness Month

~ Preemie FACT: 1 in 8 babies are born premature in the United States. Many will be to small or sick to even make it home. ~

November is Prematurity Awareness Month. In September of 2005 I started blogging so that friends and family could keep track of the roller coaster ride of prematurity we were on. I vowed from that day on that I would do my best to be an advocate AND a voice for those too tiny to do it on their own.

I will be posting our birth story a little later in the Month and most have already heard or read it. I feel it is important to share it and our story. Some times it is a negative time and most of the time it is positive. There have been so many who have run across our blog and have been filled with hope and information. I, in turn, have found so many people who are on the same journey that have filled us with hope and information.

With blogging for prematurity we hope to spread the word and provide information regarding premature infants and the struggles they face. Provide ways to keep kids healthy and to give you a glimpse into the life we live.

Challenge for the MONTH and especially for November 17th: Friends and family ( and especially family) If you have been touched by Prematurity in one way or another, please post during the month of November in honor of that preemie. Show your love and support. The more information out there the more those on the journey can feel they have some where to turn.

*If you are posting a post in Honor of a preemie, leave me a comment so we can link your blog and get the word out!*

The Potty!

I have had no idea how to even start potty training Tyler. There are so many factors that lead up to NOT potty training yet let alone on how to get it to work. Knowing he is almost 4 and still in diapers is kinda crappy. I feel like people look at us weird because we are still diapering. He is getting to big for "regular" diapers and only have one more size to go before we have to do something else. Luckily he is still kinda little so we are lucky that way.

As I have read about other people with preemies start potty training and it has taken a long time. These children generally have kids with nothing else going on ( or very little.) Because Tyler's prematurity is a little more than just little kid etc and it involves his arms and legs he can't get his pants down on his own. Which leads to the first set of problems. How is a kid that can't pull down his own pants suppose to go to the bathroom if no one is around to help him? He can't. Its an impossible task. Second problem is that he can't talk. How can a kid that can't talk tell you he has to go to the bathroom? He can't. Again an impossible task.

Ty doesn't stay dry for 2 hours at a time. He has gone without a diaper for a period of time so we could "watch" how things transpire. He holds it. He holds it and then he leaks and then he stops. After a few minutes he then just pees. We are aware he knows he is peeing or he wouldn't stop. BUT then what do you do? When asked he just says no. ( The only real word he knows) He never fights you to sit on the toilet.

What we have been doing is trying to get him to wear underwear over his diaper. Nothing big but for him it is HUGE. He has only allowed us to put them on once. With over praising and what not he was happy to wear them and wore them over night. ( again over a diaper) He will wear pull ups and understands that they are not diapers and doesn't sit down to put them on but again back to problem number one. He can't pull down his pants alone. Defeating again the purpose of potty training.

Well, we have asked and asked and asked. Sat on the toilet every single time I need to and NOTHING. Not even a small drip of tinkle. Well today he spent most of his day out in our little pool on the back patio and he was diaper less. Dallas noticed the holding and walked him into the potty. After reading a Ernie is to big for diapers book and Here comes the potty train, Dallas and I got a BRILLIANT idea of bringing in his portable DVD player. In comes Barney and Ty sits... and sits and sits. I decide to pull out my camera and practice with my new lens. ( Not great with closer shots but it was fun to practice anyway) and got a few cute shots with Ty and his DVD player. Decided to check... and GUESS WHAT... WE HAD PEE PEE!!

With HUGE claps and shouts of joy Ty gave us each high five and put on a pull up and off he went. He was not interested the rest of the night but we have some cute sitting on the potty pictures.

For your viewing pleasure. Ty went Pee Pee.



( No it was not my lens or camera. He really has red eyes. He had been in the water all day)



The rest were kinda fuzzy. I was getting ready to change lenses when we realized he had peed. I guess it is one success hopefully we will get more. Here is to PEE PEE!

Preemie post coming up...... INSURANCE and cost of prematurity

I started my blog for many reasons. I have had a blog since the day that Tyler was born. I updated it regulary. It was something that was easy to have and easy to keep updated. It has seen been closed but I have saved the updates and can go back to almost any given day and read what happened that day while in the NICU.
After a bit I changed to a wordpress blog and documented for a long time before coming over here. Blogging is therapeutic for me. It also allows others ( like my mom) and our family from far away to keep track of us. It was also a way for me to put our story out there. To met and find other moms in the same boat and to have questions answered.

As time went on that is how I have kept it. As a way to share, information, allow my mom ( and Nicky) to stalk me and yet still have the therapeutic part of blogging out there. Having a blog also opens you up to criticism. I don't mind criticism and a nice discussion of opinions.

That said (please be kind) a few of my preemie groups are up in arms about funds and donations given to certain people. While I don't have a problem with people donating. ( it is their money after all) I do have a problem when I feel like some information never gets out to the people who are donating.

So, I wanted to tell a little story about our Financial difficulties then and now with having a child born as a micro-preemie and now having a child with special needs.

We found out we were pregnant around May. I had insurance and was covered 100 percent. I was double covered. There were no out of pocket expenses. Then we had a "life change" and suddenly we found ourselves in a position where Dallas was not employed and I was losing my insurance. No insurance company that we could buy would cover me because I was all ready pregnant. Dallas got a job. I applied for medicaid. We were denied over about 50 bucks a month. So we just went with what we could. I was a student and so I bought the health insurance plan offered to students. It would cover a pregnancy with pretty minimal cost.

We were poor, struggling, students/newlyweds. We were not expecting what we got. Dallas had a good job and I was able to get a job at the same place. I went into work one day and was told that our department was downsizing. I was the last one hired. I was layed off. I was ok, because Dallas still had his job and I was in school so we still had my insurance and his insurance. A week later he was layed off. This was the first part of September 2005. The company we were working with kindly said they would allow us to keep our insurance till October 1st and then we were on our own or paying cobra. We still felt we were fine because I was only 21 weeks pregnant and covered under the insurance at school. Things were fine.. Things were fine.

Fast forward to the last weeks of September. September 19th, I woke up that night not feeling well. Sept 20th my doc said take it easy, it was nothing. Sept. 21st at 1:24am it was something. A 1 lb 11 oz 13 inch long little boy. No bigger than a ruler and skinnier than a pencil. And we owed 20 percent.

Ty was lifeflighted to LDS hospital, stablizied and this is where we started our medical journey. Once we were dropped from the insurance from Dallas job we were kinda in a panic. But something that doesn't come out often in reading about micro preemies is that babies born under a certain weight automatically qualify for social security. Social security guarantees these babies medicaid. Fact if the matter is.. these people will get their money. There is no way anyone can pay 20 percent of what it costs to keep a 25 weeker alive. There is no way.

This was written October 2. 2005:
Today we got the first "bill" for any of Tyler's hospital fees. This bill was for his Life Flight from Alta View Hospital (Sandy, Utah) to LDS Hospital (Downtown SLC). The bill is for: $9,009.14!!!!! Now this statement says "do not pay this amount" so I am assuming this is the statement before they bill the insurance company. So I don't think we will be asked to pay this amount, but we will see...


This was not for any real service JUST getting him to the other hospital safely.
While at the hospital for Tyler we received level 4 NICU care. The list, not including procedures like PIC lines and transfusions because there were to many to count in those first few days. But major procedures.

1. PDA heart surgery
2. Head Ultrasounds
3. ventilation 93 days worth
4. life flight transfer by helicopter and life flight transfer to PCMC by ambulance
5. Reservoir placement
6. multiple eye exams followed by surgery on his eyes

All of the procedures the doc charges you, the anesthesiologist charges, the hospital charges then Ty's day to day care. So his diapers, clothes, food, meds etc.

After Insurance was over in October we had nothing. Hence when the medicaid kicked in we were ecstatic. We knew that Ty would be taken care of. We still had multiple visits from the business managers there and billing people but there was nothing we could do. Those bills would reach over a million dollars.

Our cost and medical drowning came from me. I was not covered by medicaid. I was not covered by anything but cobra and my meager health insurance plan by the U. They don't cover some of the things that I had to do. We were able to pay for cobra but again you have a portion of that that you have to pay along with the premiums.

For me alone we owe ( and still do owe) somewhere around the 50-70 k mark. I still get bills that the U insurance didn't cover that we didn't know about. I had to have plastic surgery to close my c section, I had a wound vacuum keeping it closed. I had to have nursing care. I had to have a breast pump for Tyler. We weren't made of that kind of money.

What we have found though was that we could let the medical bill eat us. We needed to live. Our day to day living expenses are what caused our financial woes. Dallas was not working. He had been laid off. We were living off what credit cards we had and what we could bring in. Until I had my C section fixed I couldn't work. But I got a job right before Tyler came home to help us make ends meet. Dallas was doing contract work after contract work and we were staying afloat but barely. We would pay off part of our credit card and have to use it again just to put food on our table. We were paying for Gas to get to the hospital 2 or three times a day. That is where we saw our expenses coming from.

As time went on and we had Tyler home we had other expenses. Because he got medicaid for the first year do to the above mentioned social security our formula was covered by WIC. Dallas got a new job and we had great insurance where we paid 20 percent. BUT when medicaid ended for Tyler so did the "free" health care for him. The stuff we paid or have been billed for included shunt placement, shunt revision and 2 skull reconstructions. The last reconstruction alone was 90 k. 20% percent of that is a lot. That is just the surgeons portion. We owe for scans taken after his reconstruction because Dallas had a new job in Arizona so we were no longer covered.

Before moving to Arizona we put together our debt. It was large. It had ruined our ability to purchase anything on credit. This is including a house or a car. We have had me work to pay off some of the debt but we are no where near being out of medical debt. We will have it forever. BUT the day to day living is not like it was then. We don't' worry about that medical debt. We don't worry about that doctor who is still pursuing us after 4 years. Why? Because we can't. There is no way to pay it off.

Moving to Arizona was a hard move for me. Our medical insurance here is SOOO much better than Dallas and I could ever ask for. His work insurance, though an HMO, has been great. As long as I make all the necessary calls and make sure all the needed paperwork is done ahead of time we are fine. We pay extra to have the upgraded insurance instead of getting it in the check each paycheck. It has helped us a lot to have it covered. We have yet to have to pay more than our co pays.

For Tyler, because of his diagnosis of Cerebral Palsy and his vision we are able to get DDD insurance here. Which is basically medicaid. So Tyler is double covered. Why? Well at some point without medicaid children will cap out. He will cap out. He will have a max payout at some point. Brain surgery gets expensive. We may go YEARS without one and then do 2 in a year, like this year. It helps him get services like therapy that usually gets denied in an HMO.

HMO's don't think that water therapy or PT in general is beneficial to a child with cerebral palsy because it is a life long condition. But with his DDD services we do get them and we get what we need. Along with his DDD services we get respite care and other care for him.

So why the long post?

While people do need help in their day to day living with children with special needs, what you read on the Internet is not always what it is made out to be. Yes, financially it has ruined many people. Us included. But we made the sacrifice and moved to a state that allowed us to have better insurance and better state insurance.

We save babies at what cost? It doesn't stop when they walk out of the NICU. It doesn't stop when they are suppose to have caught up by age 2. 9 specialist for one small little boy doesn't stop if we didn't have insurance. I would be homeless to give him that care. There has to be something that works in this country.

Those living in socialistic health care countries don't have worse care. Is it the best for us? People say that they have to wait hours and hours for care in these countries, We waited for 9 hours for something that could have potentially been life threatening. Is it really "better" care because we are here.

I think it is great that people are able to get donations and feel the need to ask for them. I don't feel the need to. If someone like The Doctors want to give me 40 k I would gladly accept it and pay off what is left of our debt so we can keep moving forward. But I feel that Ty's story and his struggles and most importantly his triumphs are ours to share without reward.

Someone once made the comment ( who has a 24 weeker) that everyone should have a Tyler. And that is how I feel. I want to share him with the world. I want to be a advocate for children like him. I want to be a support system for the mother and those going through the NICU. Not asking and begging for help.

We love our son and we are and would go through financial "ruin" if you will to have him hear with us. We would and will continue to do all we can to afford his care and get him the best.

That is my soap box.. Get all the facts. Get all the information you can before sending money to people you read about over the Internet. If you feel inclined to donate, donate to the local NICU. Give them gas cards to give to the parents, give food to the food bank, make care packages. Those little things would have helped our financial situation way more than anything.

Soap box over... if you made it this far.. you get a cookie!