Halloween Night

I hope everyone had a great halloween!! && got lotss of candy!! :) Not awhole changed tonight except, HE IS DOING 4 - 1 HOUR WINDOWS OFF HIS BIPAP A DAY NOW!! yayyy only 4 more hours to goo and we can go home! lol.. they dont want to push him too much but we do have to get him used to being off for atleast 8 hours a day!! He hates that baby rhino mask anyways! lol..aiden got a whole bag of dumb dumb suckers for Halloween, so we sat around and watched notre dame while he ate his suckers!! boyyy was he a stickyy mess..he was happy though and thats what really matters..hes soo happy to see his daddy, he cannot take his eyes off him..it makes me soo happy!! i hope everyone had a great halloween, and hopefully we will be home by the end of next week :)

Happy Halloween

It has been a little while since I posted a blog, I am sorry about that. This week has been going pretty smooth. All around, Aiden is stable and comfterable. He is napping and sleeping pretty well. Thursday he really started getting his personality back. He was talking up a storm and yellin at the nurses and doctors when he was mad. That was my favorite day!! Since then, he has just continued to talk. Which is nice, once they took the ventilator out, he didnt really talk that much. They have done a few chest x-ray's (( including one today))..everyone keeps getting better. Right now they are trying to window him from his bipap during the day, then keep him on it just at night. He is doing well, he is getting 2, 90 minute windows today off the bipap machine. They will keep doing xrays to make sure his lungs are tolerating it okay. Other than that, there has just been a lot of suctioning being done. Monday, Jeff & I have a meeting with Doctor Wong and her team, the lung doctors, and the dietitians. They are going to sit down and explain Aidens plans for home. They will tell us what we need to do to keep him healthy and alive. They will also address any questions that we have about his care, if you have any questions you would like me to ask shoot me an email. jefferyandsarah@hotmail.com ..I would be glad to ask any questions anyone else has.
Today is Halloween :) Jeff is here visiting and i am telling you--Aiden doesn't even act like im here! lol i know hes been spending time with me all week, now he cannot take his eyes off daddy!! Anytime Jeffs out of his site, he cries. He is all dressed up as a lion today :) VERRYY CUTE LION BY THE WAY! LOL.. Since he will not get to go trick-or-treating, jeff and i bought him a bag of dumb dumbs, they are pretty small for him to hold onto so i tape them to his chapstick! lol he doesn't let that thing out of his site neither! Jeff learned his suctioning today, cough assist, and some CPT. He will have to be done with all his training before we go home so today was a big day for daddy!! I just want everyone to know how thankful I am to be blessed with such a great life. I could not ask for a better soon to be husband and son. I truely could not be happier...even if aiden is sick..he is the best thing that has ever happened to me, right along with jeff :)

Thursday

Aiden is doing okay today. Yesterday, his machine was messing up saying that he was not breathing at all!! && to make that worse, he had just woke up from his nap and had very shallow breathing.. He also was producting alot more secretions..so I was a mess!! I felt like I would have a nervous breakdown!! lol but he ended up being okay. The doctor said he would produce alot more secretions right now and that is normal. They have been windowing him with his bipap machine, yesterday he was off it for one hour, today he is going to be off it for 2 one hour periods. The first one went great, so we just have to keep faith that Aiden can breath on his own. He is strong enough, we just have to give him the time he needs. Yesterday, Laura, took kate and I to Walmart. We got Aiden a little Lion costume for Halloween. Even though we are in the hospital, I still want him to have fun too :) Not much has changed, his chest X-rays are still looking the same, they are pretty good. They changed his food to half alimentum, and the other half the tolerex. The dietitians going to show me how to mix both formuals together today. Other than that, Aiden is doing good. He is even giving us smiles :) We have not lost hope, and know that we will come home:)

HOME FREE?? MAYBEEE...

Today was a good day!! aidens x rays came back wonderful!!! there is just a little spot on his lungs, but they are definitely clearing up. The doctor even said if he keeps progressing at this rate, we will be going home late next week. The hospital gathered all our information about the equipment company we use to get us a cough assist, bipap machine, and a heart/pulseox machine. They also changed his formula to have tolerex, and the other half alimentum. Together it makes just the right mixture to help keep him gaining just enough weight and have all the nutrients he needs. I am veryyy excited!!!! Home seems like a far stretch, but I am hoping for the best. I would also like to see if they would send him back on a plane, I am just afraid 3 hours in the car is just going to be to much on him.
They also weened him off his oxygen today. He is on complete room air. It is just air pressure being pushed into his lungs for support. They are going to try weening him off of his bipap during the dayy too!! He gets to take his Rihno-baby mask off!! They also did an EKG today to check his heart. They have to just make sure he doesn't have the same heart problems as Jeff.
Hopefully tomorrow he will continue in the same direction. It is all up to him now!! On the non-medical side of today, Grandma Laura came to see Aiden!! Boyyy was he happy!! He only napped for like 20 minutes before she came!! (( after kate and I gave him his bath:) He was laughing and having fun!! lol then he got his arms and legs all rubbed with baby lotion, mann my son gets a body massage everyday! lol Finally at 7 oclock he was soo cranky, I layed down with him and we BOTH passed out! lol...who knows what tomorrow will bring..hopefully some more WINDOW CRAYONS!! lol those were fun, i have never seen those before today!! Kate and I are going to go to meijer and target to get stuff to make aidens halloween costume..this is the first year I've made one, so Im hoping it turns out cute :)

Monday

Today so far, aiden has had lots of cough assist, suctioning, and Cpt done to help losen up the secretions in his lungs and help get rid of the pneumonia. As I talked to each doctor, i have addressed the fact that aiden has had pneumonia for almost 10 days now. With Sma children, they say that they are just weak. They do not have the muscles to take deep breathes to keep there lungs open. They need the extra support to help keep the lungs open and help clear the pneumonia. I am hoping with the extra treatments, it will be better by the end of this week. They also increased the amount of help he is getting from his bipap.. its pretty much just helping his lungs stay open and clear. Just a little extra help with him breathing!! He is no longer hard belly breathing before!! I think thats another part of him not getting rid of the pneumonia,he was working so hard to just breath, he just didnt have the strength to fight it!! The doctor must be very hopeful that it will be better soon. He seemed very confident that he could get it all cleared up. It is in the right middle lung, and the left lower lung, they are not opened up and cleared all the way yet. Tomorrow morning they will do another chest x-ray to see how well the treaments are working.



The neurologist also stopped in to get to know us, and let me in on her plan of action. She said with SMA babies the main priority is to keep there nutrition needs met, and there air ways clear!! They have been talking about changing his formula to a low fat formula, but they have not yet decided on which one yet. The neurologist began asking me how our other nearologist determined Aiden has type 1. She thinks aiden has to many muscles functions to be type 1. I called to get the blood work sent here so they would know exactly how he was diagnosed and what was done. Hopefully good news will come with that blood work!!! pretty much this is how they explained the SMA "types" to us.. Type 1, will never sit up on there own, hold there head.. type 2 will never walk, and type 3 is just weak in general. Type one is obviously the worst kind to have. But, Dr. Wong said in type one, there are also other types.. like bad ones..and good ones, almost to where the child could be type 2 kind of thing. SO JUST MAYBE AIDEN IS THE 1.9 LOL ALMOST A 2...

They also came in today to do an ecko scope, basically an ultra sound of the heart. Children with neuology problems normally have heart conditions. Although SMA children normally dooo not.. The doctors said he is not expecting anything to come back abnormal with his heart. He just would like to have it checked since the lungs and heart work soo closely together, better safe than sorry. Jeff also has a heart condition so the doctor says he might order just a little more heart testing so we dont have any surprises later! lol

At the Toledo Hospital, they did not give me the option for Aiden to live. They told me, he will die and there is NOTHING they could do for us. They sent us home and told us to make him comfterable for the time until he passes. PLEASE, if you know anyone with SMA let them know, there is help. Toledo did not give me this option. They are letting parents take there children home, and eventually bury them. That is not fair to the parents. THEY should get the choice!!! Even if its not SMA, if someone is diagnosed with something else, GET A SECOND OPINION!! It never hurts, and you will always know you did EVERYTHING you could to give your children the best quality of life you could...

Well, thats pretty much all for now, its almost 5 so i dont expect to much more to happen tonight but i will probably still post again before bed time :) We love you all..thank you for the care and support and prayers!!

Happily, Relaxed Sunday

Today was a good day. Aiden was having problems breathing last night, but this morning--he is doing good. I talked to the nurse, and they decided to move his COUGH ASSIST up to every 3 hours. He was doing it every 6 hours. They did another chest x-ray and said the pnemonia is still there. I am pretty sure they are having trouble getting rid of it. Hopefully the cough assist, his treatments, and frequent suctioning will help get rid of it. There wasn't to many doctors here today, but the ones that were here did talk to us about a few changes they would like to make. They would like to put him on a low fat formula, he is allergic to milk so we will see how that works out. They would also like to put in a new feeding tube, it would go from the outside of his stomach into his intestines. That will help reduce the risk of him reflexing. The good thing about it is, it does not involve any more surgery. They would just take a scope down to follow it and make sure it is places right!!! On the non-medical side of today, Aiden, Katelyn, and I just kind of hung out and relaxed. We watched baby einstein ALL day because THAT is his favorite show. He got a bath, rubbed down with lotion, and I sat and rubbed his face for alonggg time. He was laughing and just having fun. We also napped for almost 2 hours!! After that was all said and done, Kate & I decided would decorate his room fun. I forgot my camera here at the Ronald Mcdonald room so I will make sure to take some pictures tomorrow for everyone to see :).Jeff ended up going home a little earlier this afternoon, he is going to be home working this week, thenn back on Friday:) We miss you already Bubba. I hope that everyone is doing okay that is following us!! We do appriciate all the support and love everyone shares. This one horrible thing made me realize how much love and support I do have, and I am glad to say I would return it to anyone-anytime they needed it :) I am going to try to get some rest now-tomorrows Monday so we will probably see A LOT of doctors tomorrow and have a lot more medical updates!! :) Love youuu All---XOXO from BABY AIDEN..A.K.A--Angel Baby

aidens pictures

i have also made a site to see pictures of aiden on... it is
http://www.flickr.com/photos/aidensmommy09/
just go there and you can see whole bunches of pictures as welll!!!

Saturday

Not a whole lot has changed since yesterday. We haven't seen any doctors or specialisted today, it is saturday. lol..Aiden is doing good. He seems to be breathing a little better today. He had to wear the Bipap machine all night. They are trying to ween him down to room temperature, before it was a cool mist. He is very happy today, we even got a few smiles out of him!! He is sitting with daddy for the day, watching NOTRE DAME football game. Katelyn and I are at the Ronald Mcdonald house, just kind of relaxing. I haven't been away from Aiden in awhile, thought I could spare a little time for myself today. I had to get some laundry done, and get some groceries for the week. Jeff will be gone and we will be stranded with no car! lol Everyone's really nice, and that helps a lot. i have never had to ask for help before, im used to doing everything by myself, or depending on jeff. This is really hard for me, but once i get back home, i hope i can atleast volunteer at the Ronald Mcdonald house. I can atleast give back to someone, like someone else has done for me and my family. I am going to start saving all the pop tabs, if you would like to help us do that too that would be wonderful. I can always come to get them from you once you get a bunch. I can never explain how wonderful it feels to have everyone supporting us through his rough spot in our lives. i hope, one day, i can repay someone else as much as people have done for me...Im going to try to take a nap now, but i will keep everyone updated everyday...

Day Two

Today we met with the lung doctor, neurologist, and got a pic line put in. Dr. Brenda Wong is the neurologist, also the best person to go to for sma children. She has cared for children from all over the world. She was telling me stories about SMA TYPE 1 patients who go to college and live successful lives. ((aiden is type 1 sma also.)) One girl is now 21 and in college. She said it really is up to how you take care of the children. She says it takes a strong person to take care of an SMA child, they require an IMMENSE amount of daily care.
Right now, Aiden is not very strong due to his pnemonia. It is going to take quit awhile for him to recover from it. In the mean time, they are trying him on a cough machine, a bipap machine..that is just a mask they put over there nose to blow pressure into there lungs. That machine is used to keep there lungs open and make it easier for him to breath. We also got a pic line put in. That is a line that goes under the skin down into one of his main veins. This is where they will put his iv fluids and draw blood from. That was the best part of the day for me, they will not have to poke him for a temporary iv anymore, or draw blood work. His poor baby feet are all cut up from all the other needles.
Another part of the SMA treatment is there nutrition needs. At Toledo Hospital, they were using a high canon nasal flow. That would push air into his lungs and belly. While he was on the nose air as i like to call it, they stopped his feedings because they were afraid he would reflex. If he would reflex by chance, the fluids that come up could get stuck in his lungs and he could catch pnemonia or even choke. There are soo many risks with this stupid disease!!! So today they explain to us that SMA babies need to maintaine a healthy weight. Keeping enough weight on will help them have more energy to use there muscles more. It was will also keep them stronger for longer. But on the other hand, they cant let them gain tooo much weight. Then they begin having trouble breathing and so on.--sooo basically for us, aiden is not gaining enough weight. he has skin pockets by his arm pit. its very sad to see. So the plan is to have him use the bipap machine at night while he is sleeping, wake him up every few hours for his cough machine and to deep suction him, and to get him up to 40 ML of formula an hour. Hopefully he will gain some weight back soon...

That is pretty much all the medical stuff we learned today..on the other hand..aiden is breathing very heavy..they are hoping that the bipap machine will help him slow down and not feel like he needs to work as hard to breath. He has been on the machine almost all day and hasn't slowed very much. I guess only time will tell. Jeff and I are doing okay. The stupid nurses and such only let 2 people in the rooms with u. I also brought kate with me so that i would not have to stay alone while jeff goes back home this week to work. We spent a decent amount of the day stressed out. It hurts us to see our little guy in such pain, just to keep breathing, hopefully tomorrow will bring good news.. we are staying at the ronald mcdonald house for the night!! hopefully we will get some sleep tonight :) it feels good to be out of the hospital vibe for awhile..i feel horrible for aiden sense he has to stay there for awhile..thank youu again everyone for all your support

Our Far Away Trip

Today, Jeffery and Aiden got life flighted to a hospital that specializes in his disease. Katelyn and I drove here with the help of melissa trusty GPS.-- (thank you by the way, prolly would have gotten lost a million times on the way). The hospital told us that life flight would be arriving in Cincinnati at 12 oclock, so kate and i decided to leave early so we could meet them here. Of corse, they didn't arrive here until almost 4 pm. Aiden's Iv cloted up and they had to put one in his leg that went ALL the way down into his bone. That took them forever and delayed them a few hours..lol Once they finally arrived here, the doctors called jeff and i back. they explained to us that they were going to see about putting a more perminant IV into him that they could use to get him everything he needs, and get blood when they needed it. this would also prevent them from pricking him a million times for blood work. They also told us about a "cough machine" they would use to help aiden clear his lungs. It send air into the lungs, then sucks it right back out, causing him to cough.. LET ME TELL YOU, IT WORKS LIKE A CHARM!! LOL he is breathing great. He finally fell asleep and actually looked comfterable for once!! Tomorrow we will be seeing Dr. Brenda Wong, she treats all the SMA children that come to this hospital. Hopefully she will give us good news, if not, jeff and i will know, we gave aiden every fighting chance at life. I really think that is all we could ask for. Well I am going to cuddle up with my baby ((havent been able to do that in over a week)) and watch some tv. I will try to keep this site updated so everyone knows whats goin on!! thank youuu everyone for the awesome support && love everyone has shared with us :)

Letter to Aiden Before we Found hope

october 19th, 2009

AIDEN WILLIAM-- when i first layed eyes on you febuary 1, 2009 at 5:04 am, all I could think was how perfect you were! you were dark complected, bright blue eyes, long eye lashes, and looked just like daddy! i couldnt believe mommy && daddy had created such a perfect baby!! And i thought about the past 9 months you had made such a fuss in mommies belly!! From day one, you were perfect. mommy wanted everyone to know how amazingly beautiful you were, and how you were such a great tempered baby. you hardly ever cried, you loved mommy, loved to be held and just loved on. all i wanted to do was lay around with you and feed you, love on you, nap with you, change your diaper, and just comfort you. the first few weeks the only way you would sleep is if you were cuddled up on mommys chest in only a diaper!! you would place your head right on mommies heart. this made mommy feel so loved. you also loved BATH TIME!! just laying in the water splashing your legs and just relaxing in the warm water. from the day you came home, you were always safe. no only were you safe with mommy and daddy, but rye rye fell in love with you automatically!! you were her baby, she even barked at mommy sometimes when i would want to hold you (( it was nap time and she didnt want anyone bothering her baby))...Everything was so perfect, mommy had handsome daddy, perfect baby, and two wonderful puppies. Then on September 25th, 2009, Dr. Sanders diagnosed you with Spinal Muscular Atrophy. He then let mommy in on your little secret, ((**you were mommies angel**))..he then explained how your muscles were going to get weak and you would soon go back to heaven with god. Aiden, i would give you ANY & EVERY part of my body to give you a long happy life. unfortunatlly, that would not help you stay strong. Once mommy came to realized there was nothing i could do to help you, i felt so wonderful god had chosen to give me MY own angel baby-**Aiden Beck**! ((mommy always knew you were to perfect)) Not even a month has passed since they told mommy you were going to be my angel. In that time, you have had a feeding tube put in your belly to eat, put on a ton of medications, had your throat suctioned, and the dreaded hopsital visits. I want you to know, mommy loves you soo very much, more than my own life. if i could give you anything, it would just to be healthy and happy!! Everytime i have to suck you out, or bring you to the hopsital, its for ONE MORE day with you. I am just not ready to let you go. I love you so much and i cant imagin how my life is going to be once your gone. i wake up every morning (( and in the middle of the night)) just to see your beautiful baby smile, hear you cry, smell your baby smell, and just hold you. i never want you to be in pain, and when the time is right, i will let you go, back to heaven to get your beautiful wings from god. i know he & grandma lile will be taking good care of my baby. i also know you will be out of pain and watching over mommy and daddy. Once your gone, i will still think about you everyday and i will never forget the joy you brought mommy and daddy. you are my miracle baby bubba..I love you..
Love Always & Forever,
Mommy

Our Hope

Aiden was born in February, a happy healthy baby. Everything went wonderful, he was a good tempered baby, loved everyone around him, and was the cutest baby in the world. On September 23rd, Aiden chocked on his own spit and was rushed to the hospital. On the 25th, after a lot of testing, he was diagnosed with spinal muscular atrophy. Basically the motor neurons are dying off and are not sending signals to the muscles to work. The muscles then get weak and stops working, and eventually the disease takes his life. He went home with a feeding tube, suction machine, and sleep monitor. Everything was going good, he seemed very happy, started gaining weight back, and just became comfterable at home. Then on october 15th, he started having trouble breathing..I felt like I knew something was wrong all week because he was having trouble sleeping, i was having to suction him a lot more, and he was just all around cranky. A little while after we arrive at the hospital, we decided to put Aiden on a ventilator. He stayed on his vent for 3 days, that 3rd day they decided to start weening him off. The 5th day he was completely off the ventilator. They have just been giving him a little air pressure through his nose to help him breath easier. The doctors pretty much seemed like they were done doing everything they could for him. They had lost hope that he would survive much long.

A few days after I arrived at the hospital, I got a phone call from my aunt Lori. She began telling me about a lady who had a son with the SAME condition as Aiden, and he would be 5 in just a couple months. She told me she would hook me up with her if I decided I wanted Aiden to fight his disease. Not even five minutes after I got off the phone with my aunt, a lady by the name of Kendra called me. She then told me how her son lives with the same condition as aiden and that he is the light of her life. She would not trade him for the world. After a lot of crying and questions, she decided to give me some numbers to another hospital that could actually give us some help with keeping him alive and healthy for a while longer. She too had been in the same spot with our previous hospital.

I left my house OVER JOYED!! I could not stop crying. Just the thought that I might have an ounce of hope made my day. I haven't really been happy since this whole thing started. once i arrive back at the hospital, they were already getting him ready to transfer to the new hospital. The doctors didn't really seem too happy about sending him away. One doctor even told jeff, "they cant do anything else for you than what we are doing RIGHT here." I do not blame them, they dont seem children with SMA survive often at all.

Today-they life flighted us to the hospital for children with SMA. We will be working with a team of doctors who know about aiden conidtion and can help me keep him healthy for longer. Hopefully one day, we will get to come home and spend time together, not exactly like old times, but atleast at home--comfterable, together.