Aidens Sick.. Again..

this morning, i woke up to the dogs fighting on my bed just like any other morning. I got up, peaked in at aiden(( seen that jeff was playing with him)) and headed downstairs to catch some breakfast before we brought him and all his stuff down. No sooner do I get downstairs before Jeff starts screaming, Sarah.. get up here aidens purple.. it took me only 2 seconds to get to his room and he was going purple fast.. his body was limp, he was not looking at me or concious of what i was saying. I tried suctioning him and nothing was working. Jeff was on the phone with the rescue squad while I decided to start CPR. His heart rate, and oxygen had dropped to zero. I honestly thought we lost him. Finally, after a few minutes of CPR, he started coming back up. He started breathing normally, and his heart rate went back up to the 150's. By that time, the ambulence was there. I decided this was the best time to get him to the hospital. He has been sick for the past few weeks, and I thought it would be the safest way to get him there. So Aiden and I climbed in the ambulence, strapped in and headed for St. V's. We got here and he still wasn't normal. He acted like he was very aggravated and he didn't want anyone bothering him. All the doctors and nurses piled in the room. They wanted the story and all his medical back ground. Aiden was not happy. He was very tired and wanted to take his nap. The nurses began suctioning him. A little while after that, everything started to settle down. Aiden began to take his nap, and Jeff and Melanie showed up. They brought all his machines from home, so we decided to put his bipap on. Everything was going pretty good..
Soo Melanie and I decided to grab some lunch to bring back to our room. We were only gone a few minutes, but when we got back, jeff and the nurse told us that aiden stopped breathing again. His heart rate had also dropped to. By that point, I started crying. I looked into his eyes, which to me.. were not normal. They were not MY normal healthy, happy aiden. He was looking right threw me. I tried to hold it back, but couldn't help but to cry. I felt like I was losing my baby! I began going through all the horrible things that had been happening, and thought aidens body was telling me it was ready to give up. I couldn't stop crying.. A few minutes later, aiden fell asleep. Jeff and Melanie finally got me all settled down.
A few minutes later, a nurse came in, she was ready to take us up to the PICU. They began getting all his machines ready to go upstairs. With all the russeling around, aiden woke up. He woke up his normal, happy baby. He was EVEN SMILING!! I was so happy.. it brought back all my joy and hope. Hope that he would be okay and make it another day. Thats all we really pray for, just oneee moree day.. everynight.. just one more dayy..
We got to the picu and they began doing all there tests and got us all settled in. I even went back home for the rest of aidens "stuff". He loves alllll his "stuff" and I just didn't think I'd be the same if he didn't have it all. When I got back to the hospital, the doctor told us aiden's right top lung was collapsed. He had a lot of mucus built up there, and just couldn't get it out. They are going to get him some meds to help thin it out, and hopefully make him feel better. I think he is already doing better. He has been talking and even trying to hold his toys again. I hope tomorrow, is a better day. I know we won't go home tomorrow, but I hope that we got home soon.. and I pray that we get.. onee more day....

Aiden's First SMA Checkup

Monday, Jeff, Aiden, And I traveled to Cincinatti again for Aidens first sma check up, since we've left the hospital. The doctors, nurses, and people we have never met, we so happy to see him. They kept telling Jeff and I how we were doing such an amazing job with Aiden, and how no matter what happens, most sma parents rise to the occasion.
His appointment was yesterday, Tuesday, and boy did he have a big day!! He went to see the lung doctor, all the doctors and nurses were gushing over how fat he has gotten. They did a quick chest xray, then told us everything looked wonderful!
Next, we went up to nutrition. They were very surprised at how fat he had gotten as well.. Everyone kept complimenting on his "rubberband wrists as my aunt calls them", and the fat feet he has. They decided to back his food off a little bit because all the fat is making it hard for Aiden to breath.
Then, he seen Physical therapy/and the Neurologist. The neurologist was so happy to see him as well. She had stopped up to the TCC everyday to see him when he was in the hospital for a month! She never really touched him, because she didn't want to spread germs from other children. She soon became Aidens favorite doctor. He always knew she would come to see him everyday, and that she would not hurt/touch him. Jeff and I had a long talk with her about how stretches and therapy is very important to aidens health, and that he should be doing both at home. Sadly, Aiden has to get let braces, to help losen his muscules out more. The good thing is, he only has to wear them at night!
After we seen neurology, she wanted a few blood tests done, and an xray to make sure aidens hips were still in the right place. He sits like a frog a lot, and that can make the hips come out of socket.
Everything went very well! We go back for another check up in 3 months. Hopefully Aiden will not get sick between now and then. The doctors said to always stay in contact! If he is ever sick, they need to know. Then they commented on how I was very good at that, and called everytime I suspected something was wrong, or was going to be wrong. It felt great knowing our cautious parenting was helping so much.
So Jeff, Aiden, and I got in the car to come back home. It is a 3 hour drive, and Aiden had not napped all day! The doctors let him play, and stretch and watch tv. He was so busy, he did not have to time to nap! So, we got to about Lima, and called it quits for the night. Aiden was cranky, it was late, and it was snowing pretty bad. Today, we are going to get up pretty early and head back home!
I want everyone to know how greatful we are to have such a great support system! You guys help us feel like anything is possible!

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 :)