Happy Birthday Aiden

YAYYY!!! Today is Aiden's First birthday..the day the doctors in Toledo said he would not make it to. It feels good seeing him today and everyday. He beat the odds. Miracles happen, and one just happened to us. It is definately alot of work taking care of him, but it makes me so much more thankful for every minute I get to spend with him. He is so strong, happy, innocent, and honestly the best baby ever. Despite all the crap he goes through, he wakes up with a smile on his face ((almost everyday)), talkin about dada, and is just ready for whatever life throws at him. When he has to get his treatments, suctioned, or bipap, he doesn't fight it or cry, he just takes everything he has to to make it to another day.
Yesterday, we threw aiden a birthday party! I just wanted to say THANK YOU to everyone who was part of that!! He was soo lucky to have soo much loving family, who would be there with him threw anything. Its been a very good year, Iam soo thankful for everything and everyone we have in our lives!!! :)

My Baby Miracle

Aidens is doing good.. he does his cough assist every few hours, cpt, and now they are adding in some breathing treatments. Over the week he has had a few spells where he goes completely pale, limp, lips turn purple and he stops breathing. It even scared his nurse. So friday night, we checked into to the good old hospital for 24 hour observation. They wanted to make sure aiden wasn't sick, and make sure he wasn't having seizures. I was very happy to wake up to Dr. V the next morning. He told me to take Aiden home because he hadn't seen anything wrong. (( I think his secretions are just to thick for him to pass, cause after he stops breathing and we suck him all out.. ONLY THICK secretions come out.. and ALOT of them..after those are out.. hes fine..)) So we came home and he is doing pretty good. The doctors in cincinnati want him to come back so they can do there own tests on him, to make sure nothing else is really going on. We will make our way back down to cincinnati on the 16th, hopefully for just a days trip. Needless to say, it felt wonderful bringing him back home saturday afternoon. --Even though Aiden & I both enjoyed seeing all the nurses on the PICU floor again.. (( i think they really missed him too)) . In the mean time, we are just hanging out at home. Watching our baby einstein moves, and just being thankful that aiden has beaten the odds Toledo gave him of living. They told me he would not live to one.. but on the 1st... we will be celebrating his first birthday!! It makes me soo happy & proud.. i always knew he was a fighter.. just needed a little help..

I hope you all got a chance to vote at the www.voteforsma.com site.. if we win, we get a million dollars for our sma research!! that is sooo much money, and would be a really big help in finding a cure!

i dont want a parent to feel the way i felt, the day they told me what aidens diagnoses was.

the doctor said... Take Aiden home, and love on him, because he will only be here for a short time. Most Sma babies will pass before they are one year old. The lucky ones, make it to 18 months. At that moment, I felt like i was dying... I felt like my insides were roting from the inside out, and i felt like when aiden passed, I would pass away with him.. or I would want to anyways.

I know god sent my little angel to me for a purpose. I'm starting to think it was because I am a passionate person, and I love with all my heart. Maybe, my passion was meant to help find a cure for my baby, or help raise money to find a cure.. i am not sure what my purpose is yet, but right now.. this feels right.

I would never want another parent to feel the way I did on September 25th.. the day they told me my baby would become my angel.

HELPPP US

Okay guys.. heres the deal.. if we get most votes.. we will win 1 MILLION dollars for research to find a cure for sma.. i kno right, a million dollars!! that could be the cure right there.. you just never know what could happen.. every baby deserves a chance.. including mine!!! all im asking for is 2 clicks..

www.voteforsma.com

you just never know, what if one of these babies could find the cure for cancer in the future?? .. you just never know what there little minds are capable of :)

Home Sweet Home

Hey everyone!! It's been awhile since i've posted anything!!! Aiden's surgery went really well, he had surgery on Monday-the 23rd! then he came home Sunday the 29th! He was a little cranky for the first couple days but he is doing WONDERFUL now! They wrapped the top of his stomach and it helped soo much!! He was having a lot of secretions before. Now he just has to be suctioned a few times a day. We still suction in his mouth a lot, but not as much as before! He's back to happy aiden baby! Playing in the tub, reading books, singing along with the tv and mommy, and playing with the piano grandma cole sent him! he LOVES that toy!! ((THANK YOU GRANDMA)). Other than that our families doing very well! Jeff and I got engaged on Sunday! Time to plan a wedding.. that will have to come in time! lol- i am back to work and even thinking about going back to school (( probably just part time to start)). We found a nurse to come at night to stay with aiden so we can get a few nights to sleep! thats nice, even though i have to get used to it. i still wait up a lot at night just to check him! lol.
On a not so good note, I was told yesterday there is another baby who was diagnosed with SMA here in Toledo. Please pray for her, she is very sick. She has pneumonia and is in the hospital. She def. needs all the prayers she can get! i hope her parents call us, even to just talk!! If you guys are reading this and you need anything, just call!!! (( im sure you will get our phone number))..even if its at 2 in the morning and you just need to talk.. i am here and i know what you are going threw!!
Well, its about time for aidens treatment so im going to get off here for now!! i hope everyone has a good holiday :) We will, we will just be thankful for all our family and friends!!!

Aidens Surgery

Heyy Everyone!! It's been a really long time since I've posted anything on here!! I am really sorry...it's alot of work taking care of Aidens, working, and having family time :) Its very tiring at the end of the night. Yesterday, we did come back to Cincinnat for his surgery. They wrapped the top of his stomach with his esophagus. This will help reduce the risk of him refluxing his formula. They also changed his feeding tube, to a button. Now it is flat to his skin, it just sticks out a little bit, but he does not have that long tube anymore!!! (( i am verry happy about that, sometimes he would pull on it, or it could get stuck on something..its wayy better this wayy!!)) The surgery went veryy good!! The doctor said he did have some trouble getting the old tube out, but he eventually got it out!! Aiden is very cranky. he is definitely in a lot of pain. They made 3 small incisions in his stomach. They also cut acrost his belly button, and around his feeding tube to make the hole bigger. I think where they cute around his tube is really where it is bother him. They gave him some tylenol and another pain medication so he was doing pretty good when I left the hospital tonight.
When they did the surgery, they had to put him on a ventilator. When they first told me that, I kept crying. For a normal kid, thats fine. They can breath on there own and be fine later. For Aiden, he has respiratory issues as it is, so I try to keep him off oxygen as much as possible. His little body will get lazy and let the ventilator do the work for him, in just a short period of time. This was my biggest worry yesterday and all night.
Today, at 12, they pulled his vent. He is now on high-flow-nasal-cannula, basically its just pushing air into his lungs to make it easier for him to breath. He is doing wonderful with it, although he is working a little harder to breath! You can see it alot in his chest movement. Tomorrow they are going to start using his bipap again. They want his stomach to heal a little before they put to much pressure into his lungs. They also started his feeds back up today, he hasn't ate since 5 am yesterday morning!!! UGhh, that is soo frustrating for me. Aiden only cries when hes hungry and in pain. You can only imagine how cranky he was today being in pain and being hungry!!! He tried to nap from 1-4 pm today, all he did was whine. He is now eating, and getting more pain medication soo tonight he should sleep pretty good!!
I hope everyone has a great thanksgiving!!! Spend all the time you can with your family and just be thankful for what you have!! I know this year, I am looking at everything differently!! I have never been able to take help from others very well, now I embrace it and try to just help others in return. I am very thankful for Aiden, Kendra for telling me about Cincinnati, my family, friends, all the support we have, and just having a good life. I have so much to be thankful for. I think of everyone who helps us, and loves us everyday..we really couldn't ask for anything better than that!! Thank youu for keeping us in your thoughts and prayers, we will do the same for everyone in return :)

Finally Home

Sorry it's been a few days since I've posted anything!!! We got home Thursday night.. it felt WONDERFUL to be home again!! that first night, I did not sleep at all..&& on Friday we had lots of nurses over to see how Aiden was doing. That day all I did was dragg!! I wanted to sleep soo bad! Aiden did WONDERFUL the first night home. I put him in his bed and he fell RIGHT asleep!! He must have really missed his crib! lol. He did awesome on the ride home. He slept all but an hour. The last hour all he did was talk. He really enjoyed his car ride!!
His grandma is offically his nurse!!! That makes me comfyy because I know her and I know Aiden will be well taken care of. Also, the insurance company approved us for 56 hours of nursing care a week! That was the best news I've heard (( besides going home)) all week!! I am going to use a nurse at night a few days a week, and the days that I am working. I will have his grandma, and another nurse come in! Aiden's care is veryy time consuming. He has to have something done to him almost every hour. It is very tiring.
The only thing that I am really concerned on is, when I was suctioning him, he was having A LOT of formula come back out!! Which means, he is refluxing, and its VERYYY bad!!! I am going to call the doctors in the morning and see what they want me to do. Aiden goes back on the 23 to have his stomach wrapped, so I'm hoping they don't want us to come back already!! I guess if it's what he needs, then that is what I will have to do. We wil be there through Thanksgiving..sorry everyone.. :(
Othe than that, Jeff and I are doing okay. We are just cleaning up the house. We had to reorganize EVERYTHING so we could get aidens machines all in his room!! which meant taking alllll the toys out!! lol.. but thank you for your thoughts and prayers!! take care everyone!!

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