A Story From My Pastor

A story my pastor told me the morning after Aiden passed... she had been sitting with him just hours before he passed.

The night Aiden passed, he came to me in a dream. It was exactly like it had been earlier in the night. I was sitting next to Aidens bed, holding his hand and talking to him. (( For all those of you who doesn't know, Aiden had stopped breathing and was without oxygen for so long, he ended up brain dead. At the end, he was vented and there was no brain activity. The doctors told us, they could try one more medication to see if the swelling of the brain would go down. Eventually that night, his levels were out of control, and his heart was over 200 bpm..So to me, aidens mom, I felt like Aiden was telling me that we were done. He was ready to let go, stop fighting, and go to heaven.)) .

In the dream, I was sitting next to him, and he was standing over his body. He looked at me and asked if the baby could get up and play. She simply replied, well he is very sick, and he will not be able to play... Angel Aiden paused for a moment looking at the baby. He finally replied, that's me isn't it? Barbara Jean replied, Why yes Aiden that is you. He stood there for another moment, then turned around, ran into the light... As he ran into the light, he yelled.. it tickles..

The day we were planning Aidens funeral was very stressful on everyone. I thank my pastor for being so supportive because this story got me through many rough, sleepless night. I also thank my family, for always standing behind my decisions on treating aiden for his sickness!!!

Love Sarah
Aidens Mommy

This is on the facebook page of Aiden.. If you'd like to follow his face book page,

http://www.facebook.com/group.php?gid=125258280823156&v=wall

I know its been a longgg time since I've posted on this.. I'm hoping now that I'm starting to be able to talk about him without crying, that I will begin sharing stories of him that I cherish!!!

letter to god

a day in my shoes...
i WAKE UP.. numb.. the only feeling i have is if im tired, or if im completely awake. some morning, im so awake i feel like i could put the worlds problems on my shoulders, and have an actual plan on how to fix them. other mornings, i want someone to bury me in the deepest hole, probably in the deepest end of the ocean. Needless to say, everyday in my shoes.. feels worthless.. or like i could careless if im happy, or if i was alive tomorrow.
I go to work, pretending my life is fine. I act as if im happy, and i always have something that will keep me happy. As people look at me, they think im happy...the only thing that might throw them off, is the fact that i dont do my make/hair..and it looks like hell...
customers/friends/people i know.. ask me how my son is doing, for they know i was previously expecting. I give a genuin smile, and say.. he passed on a few months ago.. .. now.. everyoen i say this to stops.. they look at me as if someones punched them in the gutt and they dont know what to say.. so i go on with a careful look on my face saying.. " ohh..hhes doing better now.. he fought a long and hard battle, and hes doing better than ever where he is." .... i know people do not know what to say to me, i dont know what to mentally say to myself as this statement passes my lips. this happaneds a few times a week, each time, the lie of me saying hes doing good in heaven, happens to feel harder and harder each time i say it.
as people come and go to my window, i feel as if i phsycially go through lifess motions,, but as if im not mentally there. or as if life is just passing me by, and im just sitting still.
as i travel through life, i feel alone. i feel as if i do not truely know anyone whos had such a horrible experience as i have, and as if im all alone. i feel like god is punishing me...i mean.. if he wasnt.. why would he take suuch a precious gift away from someone. needless to say, i feel alone.. and as if i have no need in waking up tomrrow..
3 monthsly ago, iw ake up to a perfectly happy baby..it happens to be the morning after mommies day..the day before aiden, jeff, and i watched movies and spent the day in bed together.. i did do a few treatments though... and by night time.. i was ready for the nurse to take over. i lay in bed, listening to aiden whine, as he wakes up to a nurse he does not know.. he does not want her..he wants his mom or dad, or his theresa.. i feel a sence of relief with the nurse, i feel like even if aiden freaks out, she will be ok with him, just patting his butt, and singing baby einstine, for that is what mommy would do.
the next morning i wake up bright and early, for aidens 6am treatment.. i felt horrible for falling asleep while i listened to him cry with the new nurse the night before. my poor son has been through so much already, the least i can do for him is comfort him while his time on earth is brief, and i would never get that chance after he passed on.

Pulling Aidens Vent

Today, they decided aiden would be ready to pull his vent. So, at about 330 they pulled his vent, put him on some increase bipap setting, and we are hoping for the best. He is having some increase work of breathing, and lower blood gases, but the doctors are still hoping... as well as I am that he is strong enough to be without his vent. My poor baby just cannot catch a break. He is such a trooper, but I think its just not enough for him when I'm not down there with him. He is brave, but has learned the difference between nurses, doctors, respitory therapist, and family. He cries everytime anyone other than family enters the room. Sometimes, he even gives me "the look" to make sure families okay.
He does still loveee his daddy though too!! Once they pulled his vent last time, dada was the first thing that popped out of his mouth!!! I dont really care though, as long as he is happy. The nurses said they are going to keep a close eye on him through the night, and see if he can get his strength up enough to stay on the bipap..
Jeff and I dont really know where we are going to do from here. I always thought about, "what if" the bipap didnt work.. but I am just not ready for that time to come. I just think aiden is to strong, and I dont want a machine to breath for him, especially since I think he is still strong enough to do it on his own. Hopefully, he will have a full 360 by morning. If not, maybe he will do better if im just there. I guess only time will tell :) Thanks again for all the love and support

My letter To God

Dear God,
As I travel home from spending time with my son, I have lots of time to think about life. I pray for the strength, and health to get up every morning. Please give me enough will power to get through the day without being upset. I hope to not sin, be nasty, evil, or hateful. I want to be happy, loving, and helpful. I want the strength to show how thankful I am for everything you have provided for me in life, and all the challenges I have been able to conquer. I want for Aiden to know that hes loved, more than I could ever show or tell him. I hope he knows his happyness is one of the things I strive for everyday, and I would give anything to make him healthy.
I do want you to know, I find it unfair you have chosen such a sweet, loving baby to have such a horrible illness. Although I am not mad, I know you do have a plan for me. I will never know what the plan is ahead of time, or why you chose for things to happen. If I could ever ask for anything, it would be for you to take as much of Aidens pain away as you possibly could, even if it means inflicting it upon myself. For he is my one true love, and I depend on you to watch over him while I am not with him. I depend on the strength you give me, to make it through the week, so I am able to work..then go see him. Please help me get him heatlhy through this rough time in our lives, for I cannot be there as much as I was last time. Please help him in a safe return home.
Love Always & Forever
Sarah-Aidens Mommy

aidens sick again

Friday, Aiden's lungs were doing pretty good. He couldn't really stand to be off his bipap very long, but he could be off for few minutes. I went to work like any other morning, while grandpa don stayed at the hospital to hang out with our little buddy. After work, I arrived at the hospital to find the doctor ready to send aiden home. He said he was doing good, back to his "home settings", and that he thought he would catch something if he stayed at the hospital. Don and I packed all our stuff up and headed for the car. Laura, aidens grandma, soon came to see us. After we got just enough meds for the night, and had all our stuff packed up, i picked aiden up and headed for the car. I noticed he was having a little trouble breathing when we were almost to the car. I ran to the car, don ran behind me. He plugged the bipap in, while i suctioned aidens airway out, and tried to plug his other monitor in. Laura got to the car and began helping don with aidens bipap. Before I knew it, Aiden had stopped breathing. Laura scooped him up and ran him to the ER. She did CPR all the way to the ER as well.
After many minutes, the doctors came out and told us they had to put a ventilator tube down his air way to help him breath. He was breathing on his own at this point, just with some help of a few breaths. He told us to come in and see him. All I could think about was how we were just on our way home, and now hes on a ventilator. I walked in to my babies helpless body laying on a hospital bed. Everyone was working around him. I cried as i watched him fight his ventilator tube. He hated it, and wanted it out. I thought about the minutes he had been alone, in a room full of people he didnt know, while they got him stable.. and then i cried some more. I watched him and cried, i was very caught up in my thoughts and emotions. All the sudden, I heard familiar voice. It was the ICU doctor that had just sent him home. He began telling me that Aidens disease is a progressive disease and we needed to think about alternative care for him, or our next move. He went on telling me how even if aiden survives this episode, it will happen again and again, until he doesn't make it anymore. I stood there staring at him, not sure how to respond. He soon walked away. I soon felt mad, sad, furious, every emotion imaginable at that moment. In the past, I had taken Aiden to cincinnati, where they specialized in his disease. The doctors there knew aiden, they never questioned aidens ability to survive. I suddenly realized, i was enraged with anger. Aiden was, and had been sick for a little while. He had been sick before this, and just needed time to get over his illness. BUT i knew, he would get better and go back home.
Aiden has always been so full of life. He wakes up every morning with a smile on his face, and takes whatever life has to throw at him. I suddenly felt my fury rise. This doctor had only taken care of aiden one time, one day. I have fought this disease with him for the past seven months now. Aiden had been sick for a few weeks now, but he was still my happy baby. He was not ready to give up, and not ready for us to give up on him yet.
I soon realized, I was staring at the only thing that mattered, Aiden. He needed me, his mommy, to help him get better and stay calm. The vent tube was still down, but the nurse was now instructing a studen how to give aiden a few supportive breaths. We waited in that room for a few more minutes, until the nurse took us up to the PICU. We went to the same room we had left, only now, aiden would be on a ventilator. His lungs were weak and he just needed a break to get better. He slept pretty good that night.
The next morning, the respitory therapist told us she didn't think he needed the vent. She felt he was strong enough to breath on his own. A few hours later, they pulled the tube out of his airway. He did pretty good over the next few days. He did his treatments, and only dropped a few times. Monday morning rolled around before we knew it. The doctor had ordered an xray so we could see how aidens lungs were responding to the treatment. This was not good news, his whole right lung was covered with pnemonia. The doctor told us we had a few options. 1.)trec and vent him 2.)go home with hospic 3.)reventilate him 4.) go to cincinnati.
I didn't feel like these were things I wanted to do. Aiden needed time. Why couldn't they give him time. The therapist soon came back in to tell me, if aiden needed treatments every 4 hours, they could do it, there.. where I could stay with Aiden. Soon our lung doctor came in to tell me he would take care of aiden. Good care of aiden. He would get him better and ready to go back home. So we have decided to stay and be with him.

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 :)

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!!

Pictures

No Changes Here

Aiden is doing wonderful today!! He is soo happy and alert! He is yelling at me everytime I go to talk to someone else! lol he is verryy funny today!! He was going to have a GJ tube put in. Basically the tube goes from the outside of his stomach, to the small intestines. Aiden already has a G tube in, just from the outside of his belly to inside his stomach. Thats how he eats.
Well, they took him down to surgery and after looking at his tube they realized they could not change his tube. There is a disc on the inside of his stomach, they would have to pull that disc through the opening in his stomach and the doctor realized that it was going to cause to much trauma to his body and skin so they didn't touch it! I guess we will just have to come back this month sometime to have his stomach wrapped. He should be okay until then.
Other than that, he is good. I talked to the equipment company and they should have all his equipment home and working tomorrow. The doctors said we should be home on Thursday!! UGHhh..home just sounds tooo good to be true, so im not going to get my hopes up!!! thank u everyone for the thoughts and prayers! Jeff, Aiden, & I are so thankful, and lucky to have such a great support system!

Great Dayy

Today was a great day!! Aiden is doing wonderful!! He is laughing and talking like crazy.. it is great to see him back to his happy baby self!! When Jeff and I got to the hospital this morning, he was sitting in the doorway, in his swing, talking to all the nurses and people that were walking by!! He has the whole hospital staff loving on him every second of the day! He was supposed to get his GJ tube put in today, but they didn't have everything they needed for his tube to put it in. Tomorrow morning they will be getting everything and putting it in!! Wendseday, is the day that we are finally going home!! Yayy, we cannot wait to get back to everyday life!!!
Aiden's getting verryy bored in the same hospital rooom all the time, so Jeff and I put him in the wagon and took him around the hospital!! He LOVED that!! Can't wait to get him goin home and back to normal life!!

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Finally..HOPE!

Yesterday, I talked to an equipment company and they FINALLY agree'd to give aiden his bipap machine, along with his cough assist, special formula, and oxygen!!! YAYYY.. that felt great!!! I was soo excited!! We get to go home on Wednseday!!! YAYYY.. Aiden will be soo happy to go home to see all his friends and family. Other than that we are doing wonderful!! He is needing to be suctioned alot, but that is something I can handle! lol.. He is spending the dayy with daddy watching football, and melissa is coming to see me :) we are going for girls day!! Thank you for all your thoughts and prayers. :)

Unsure

So, not a whole lot got done today. Aiden still doesn't have his Bipap machine in order to go home. Although, I did talk to a company that "thinks" they should be able to give us a bipap as long as I signed a waver for him being to small. He needs this machine so I will do what it takes to give him life! I want him to fight, to be a strong happy baby, I know in my heart, he is not ready to give up his fight just yet!! If this does not get Aiden what he needs, we are talking about sending him back to Toledo Hospital until we can get what he needs. We wanted him to go to St. V's, but our insurance won't pay for it. So, we have to see if the equipment company will be able to get the machines, if not...then we have to call Toledo to see if they can take Aiden back. I hope tomorrow, everything will fall into place!!
On the non-medical side, Aiden was very good today!! He was a little cranky today. I think he just needs to get used to being off his bipap for the 6 hours a day!! His chest x-rays have come back wonderful!! Soo the only thing we are doing is waiting for him to be ready to be off his bipap for 8 hours a day! lol if aiden can't go home, i am hoping toledo can give him the care he needs, then i can come back home to go back to work. Aiden will also be around his family and that is what he needs. He has his fun baby personality back!! He talks and is always trying to play with something.. I could not be happier for the treatment Cincinnati is giving him here, but we are readyy to go home once hes ready to be off the bipap for 8 hours a day!! :) Thank you everyone for your love and prayers!! :)

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Almost Time To Go Home

Okay, so about 20 minutes ago a lady from early intervention called me and said she knows a company that should give aiden the bipap machine. So, I called and the lady says she does not think that there will be a problem getting us a machine!!! yayyy... I am going to keep my fingers crossed. HOPEFULLLY IT WILL COME THROUGH THIS TIME!! But if this does not work, Dr. Reddy said he would continue Aidens care at St. V's. So, if we do not have any luck getting a bipap machine, we will have aiden sent to St. V's on Monday!!! It does stink that Aiden will have to be in the hospital longer, but he will be able to be close to home and by family. I will then go to work again!! yayyy :) keep your fingers crossed please!!