SMA Taking Its Course

On August 27th 2010 we were admitted into the hospital for respitory distress, two lungs white out with phenumonia and a right collapsed lung. I knew we would be admitted but the biggest shock was not realizing how serious Keely's condition had become. Within 3 hours of being there we were told Keely had possibly only 12 hours to live. This is the when SMA took its course on our baby girl. Leading up to this i would often think how much I wanted to prepare myself for the moment I was told her life was near the end. But death is a horribly unwelcomed guest that you know will eventually just show up. You can deny it, ignore it, reject it and push it away and only until it has landed square in your lap only then do you deal with it. Knowing one day your child will pass does not make it any easier or lighten the load. There is no possible human way you can prepare yourself for devistation. So when we faced this her life flashed before my eyes and automatically i blamed myself for her being so sick. This is your first and only instinct because you as a mother are helpless and its one of the few things you cannot do as a mother is keep your child alive from a terminal disease. With help from the wonderful doctors and nurses we had but most of all much stubborness and fight from Keely she pulled through that touch and go week and a half before we started to see her climb again. Keely was the real hero through it all and she proved that by not sleeping for 36 hours straight because she was busy fighting to stay with mommy and daddy. We stayed awake for 55 hours straight mostly because If she only had a certain amount of time to live I wasnt going to miss any of it. Everyone was astounded by her progress including Scott and I. Prior to this illness she was not dependant on anything but me. Within a week she was placed on a bipap ventilator, given a NG tube to eat, required deep mouth and nasal suctioning and required many meds to help with reflux to prevent aspiration. She still relies on all of these to keep her healthy. Following this initial episode it was not an easy road, the 12 week hospital stay kept us on an emotional rollercoaster ride. Three differenct instances we were faced yet again with touch and go circumstances. A mucus plug that clogged her airway and couldnt breathe, high volume of secreations that she could not manage and it was like drowning from the inside in relation to her breathing and just plain secretions getting out of hand. All of which cut off her oxygen and declined her breathing abilities. She also stirred up a few viruses aside from this. While tweeking Keelys needs we had alot of road blocks. I was present for all of them and never once did it get easier. It was harder and harder every time we faced another situation where Keelys life was balancing. Just when we thought she was getting better and getting strength back we would get knocked down yet again. To see your baby turn different shades of blue, grey and purple because she is losing oxygen and you only have seconds to figure out why makes you lose a little bit of hope every time. I would witness everything from beginning to end. At the beginning I would have to assist the nurse until more nurses or doctors piled in then I found myself standing back with 5-8 people working on her trying to get her stable again. I remember standing there crying waiting for someone to turn around and tell me the worst or see her pass away in front of me. I would just never know but I always had to stand there and watch to see for my own eyes and so Keely always knew I was there. When I was little everything was always okay when my mother was there so I always made sure Keely could see me even though it was the worst thing in my life to stand there and watch while they tried to get her stable again. No baby or child I feel should ever have to live their lives going through repititive emergency situations. These episodes would happen and then it was a waiting game to see what the outcome would be. The feeling of not knowing what the next day holds in store in frightening and learning to live on a day to day basis. I would not leave her bedside for 3-4 days from fear of something happening to her and me not being there. When I did go into the halls to use the washroom i would feel like the life was sucked out of me and I was being pushed from behind. A simple washroom break would scare me because I would feel panicked that I need to get back to her side. Staying in the hospital for 2 1/2 months to some may seem like bordem beyond belief and many would say they couldnt imagine. When you see the help your child is receiving and you see her getting stronger day by day you dont think of your self and the time thats passing you think another day with my daughter well spent. When you have the right support by your side and you see the care that your child is receiving its the only place I could imagine being. We stayed in the Pediatric Intensive Care Unit for the entire 12 weeks. I remember being admitted in June 2010 and we had to walk past the PCCU to get to our room on the ward. I remember thinking "i am really glad we are not in there". The thought of the PCCU scared the hell out of me because only serious cases are in there. Almost everyday I would see a person or family going in or coming out of there upset and crying and you could only imagine what they may have been going through. When I first found out we were being admitted into there I was devasted. We were those same people at that time I had seen a few months prior where it was either Scott, myself or our family sitting outside those doors crying and upset hurting for Keely. However on the other side of those doors we had people fighting for all of us. Within those 12 weeks i realized there is no place I would have rather been with Keely. It was extensive around the clock care and by far the best care. Because so much had happened to Keely during this time she had lost much reserve and her baseline had declined substancially. We would never have our care free life with all Keely back but the fact of the matter was we had Keely.  Keely finally had a good stretch episode free and we made the decision to get the proper training so we could bring our baby girl home and care for her soley between the two of us. It was very nerve racking learning in about 3 weeks what some take to learn in 3-4 years. Scott and I learned everything right along side one another because we were in this together and were eager to do the best job we could for Keely. The miracles ive witnessed within those 12 weeks on behalf of Keely just proves to me there is a higher power and with faith and love its amazing what gets you through. We made many friends who felt like family and Keely stole many hearts and I never thought it would be so sad to say goodbye to the PCCU. We were discharged on November 3rd 2010 and we were about to take on the heroic task of caring for our fragile little angel as a mommy and daddy, as a couple and as a team. It was the most nervous feeling I can ever recall having leaving that hospital alone with Keely and having the weight on our shoulders of having Keelys life in our hands. I told myself not long after her diagnosis that I would do whatever I had to do to give this little girl the best life experience possible and caring for her medically was a big part of that. Anybody who knows me knows that this is not one of my strongest abilites but i have proven that it is true that a mother will do anything for her child. Keely fought to stay here for her mommy and daddy now its my turn to fight to keep Keely here with us!

Our Christmas

Seven months ago Christmas seemed so far away. I would often think of it and wonder if Keely would be here with us.  Everyday for the entire month of December and even days leading up to it will Keely be here for my birthday, will she be here for hers, then Christmas and New Years?? Well I was able to share my 30th birthday with her, Her 1st Birthday, Her second Christmas and her second New Years and i couldnt be happier! Our Christmas was the best and most memorable. We started by opening up presents and would take turns between Keely, Scott, Shaely and myself. We video recorded our entire Christmas morning. All of Keelys presents from Mommy and Daddy were wrapped in red minnie and mickey mouse wrapping paper and her Santa presents were wrapped in red and green mint candy swirl paper. We would give Keely a present and she would hold it and try to eat it, she wasnt letting it go for nothing, some parts were soggy and she loved every minute of it. I would put a little tear in one spot and for about a minute she would use her little index finger like she always does and try to slowly tear at it some more. She wouldnt get very far but it was the cutest thing. She doesnt have very many capabilites when it comes to using her body but the little ones that she does are absoutely amazing to us. So when it came Keelys turn to open a present which we would do two at a time, we would take turns and help her rip them open. We would take her hands, sit the present in front of her and take her hands rapidly and rip them open like a cat would to a scratch pole and she had this intense look on her face like she knew that this is how you open presents and of course she only wanted the paper after. She cared what it was but she LOVED ripping the present open and holding the paper afterwards. It took us about over an hour to do our gifts and she sat content the whole entire time laying in her spot on the couch watching everything that was going on around her. As we all took our turn opening our gifts she would sit and watch. When I was recording I would take the camera and record her watching Shaely and Scott open their gifts and she was just loving Christmas. Scott and I believe that she knew it was Christmas, and it wasnt just another ordinary day, we could feel the amazing feeling just having her here and being able to share this beautiful holiday with her. We spent the rest of the day getting ready for all of our family to come for dinner. We had dinner at our house so that Keely wouldnt have to go out and rest assured for Scott and I. Everything just felt so perfect and it was all because Keely was here! Days leading up to Christmas Keely loved Christmas music. Her most favorite thing to do was for us to pick her up and do a little slow dance with her with some spinning. These days you really have to work to get a chuckle out of her because her intelligence is very high and it needs to be pretty darn funny if shes going to work up a smile so theres the saying Dance like nobodys watching so thats what we did|! You barely had to start moving with her and her face would light up like the Christmas tree that was standing behind us. It would feel like the most amazing feeling to me as once song we danced to was Blue Christmas by Elvis in the living room and I was holding my baby girl in my arms one hand under her bum and the other hand cradling the back of her neck so I could see her beautful face. I would dance us around and watch her face smile and as i sang to the sang she would hum along with me (but only if i was singing). We would dance to the entire song and the entire time she smiled. She may not be able to walk but if there is anything I can do to help her feel that feeling than dancing is what we will do. We did this often, always a few times a day then I let daddy in on our little secret and they would have their daddy and daughter dance too. Since Christmas is over its been Fraggle Rock. When the song comes on Keely will look for Daddy and immediately start to laugh as he starts to dance. I will never forget her smiling face all the days that we dance together. All and all Christmas of 2010 was perfect. Keely stayed awake the entire time as she always does when we have people over so she doesnt miss a beat. Merry Christmas Keely Louise....Thankyou for making our Christmas the best Christmas ever!