Abigail Lynn: Our Baby, Our Angel

After 7 years, a number of different doctors, a battery of sometimes-embarrassing tests we finally found a plan of action that worked. On June 5, 2003 at 8:17 a.m. we saw our beautiful little angel for the first time. The first time we laid eyes on her we were in love. She had a rapid heartbeat and had to spend some time in the nursery where the nurses bathed her and we waited for her to calm down. Her heartbeat slowed down a little but was still a little fast when the nurses finally said we could be together for the first time as a family. Daddy brought Abby up to the room to see Mommy. It was the happiest and most exciting time in our lives. While we were at the hospital Grandma and Grandpa Galbraith and many visitors came to see us. Visiting was tricky though because of all the SARS stuff going on. A couple of days later the doctor checked her out and thought she looked fine and we were on our way home. Grandma Loebach was at our house to stay with us for a couple of weeks while Daddy went back to work. We had Abby's room all done up for her with a big crib and a beautiful change table from Aunt Joanne and Uncle Jamey. She had Winnie-the-Pooh stickers all covering her walls and a big red dresser for all of her clothes. Everyone who came to see us remarked on what a good baby she was. She hardly fussed or squirmed at all and she seemed very content. She was a good eater and slept fine throughout the night. After a week and a half Grandma realized that we were fine on our own. Grandma always seemed a little worried though that Abby didn't seem to move a lot. Grandma and Mommy took Abby to see our family doctor just to make sure things were O.K. and have her 2 week check-up. Everything seemed fine to him. A couple of weeks later grandma came back for Abby's baby shower and thought she was moving even less than before and urged us to make another appointment and see the doctor again. We made the appointment and Grandma came down to take Mommy and Abby again. Mommy told the doctor about her concerns and asked to be referred to a pediatrician. Much to the amazement of Grandma the doctor told Mommy that she was just a first time mom and that there was nothing to worry about.

On July 16,2003 our world started to turn upside down. Daddy took Mommy and Abby to see our O.B./fertility doctor for Mommy's 6-week check-up and said we had some concerns and wanted to be referred to see a pediatrician, which was something he wouldn't ordinarily do. We also wanted to get a picture of Abby and the doctor. The doctor happily agreed and held her for a picture. Our family headed home which was approximately a 1/2 hour trip. When we arrived home there was a message on the answering machine from the O.B. saying that he made us an appointment with a pediatrician for the next day. We could only wonder what was the urgent problem. The next day was a Friday and when we went to the pediatrician he examined Abby and said that there was definitely a problem but didn't want to guess as to what it was. He said he would make some calls and get back to us and to try not to worry. It was about this time that we noticed that Abby wasn't eating as much as she normally did. We became very worried. The following monday we got a call from the pediatrician telling us that we were to see a neurologist at Windsor sick kids the next day. Things were happening so fast! Despite our best efforts to assure ourselves that she would be fine panic was setting in. We searched the internet trying to find answers as to what was wrong with our baby girl. Why wasn't she moving? Why wasn't she eating as well? The next day we arrived at the neurologist's office with Abby, a load of questions and 2 scared parents. The doctor examined Abby with a number of tests and by the look on his face we new something was really wrong. We started asking questions and it was obvious we had been searching the internet for answers. The doctor asked us if we would be able to take Abby to sick Kids in London which was approximately 2 hours from our home as they were better equipped to deal with things there if there was a problem. We said yes of course and wanted to know when? He said Today... Shock and panic set in immediately. He said it was only a precaution and that he wasn't sure what the problem was but thought it would be the best place for her if there were a problem. We guessed that he knew what the problem was but wanted to be real sure with something like this before we found out. He said to take Abby home and he would call us when London would take us but be prepared to go right away and to please stay off the internet. We went home and packed up and waited by the phone for the call. It never seemed to come. Finally much later we got a call that said London would take us but not until a week later on the following Monday. We were told to try not to worry in the meantime and to stay off the internet. How could we not worry? Things were happening so fast! Going against the doctors wishes and unknown to Mommy; Daddy searched the internet and came across Werdnig-Hoffman disease. Abby had all the classic symptoms and looked like the poster child for this disease. Daddy quickly turned off the computer and told Mommy that he didn't find anything and thought it would be a good idea to do what the doctor said and stay away from the internet. Daddy told Mommy that we should try not to worry and that he was going out to the driving range to hit some golf balls and to try to relax. When Daddy left Mommy and Abby seemed fine. The drive to the range was almost a horrifying experience. All kinds of crazy ideas were popping into Daddy's head. He was no doctor. He couldn't be sure but this disease and its results wouldn't leave his head. Daddy went down to the end of the range by himself and started to cry. This can't be happening. This can't be it. Daddy needs his little peanut. She has to be O.K. T he awful gut feeling wouldn't go away though. Daddy waited for a long while getting himself together without hitting a single ball. He had to convince himself to go home and try not to jump to conclusions and to try and comfort Mommy and Abby. What a long day. Abby seemed to be eating less and doing less all the time. We couldn't just sit around and wait. Finally after a couple of days we decided that we would go to Daddy's parents house in London which was very close to the hospital we had to go to. We needed support and we needed to be around our families. We were 2 very scared people. We arrived at Grandma and Papa Loebach's house on Friday and they did there best to convince us all week-end that it could be anything and that she would be fine.

On Monday July 28th we took Abby to our appointment with the pediatric neurologist at the sick kids hospital. The doctor checked her out for what seemed like only a brief moment. He left the office for a second and them came back in and shut the door and sat down. He looked up at us and said that he was afraid that he had some very bad news for us. He said that he was sure that our daughter had Werdnig-Hoffman disease or Spinal Muscular Atrophy type 1. Daddy's heart sank. He knew what that meant. Mommy cried a bit but wasn't sure what that meant yet but knew by the sounds of things that it wasn't good. Mommy asked the doctor if Abby would be O.K. The doctor just said no. Mommy asked if she would need some type of therapy or eventually need a wheel chair or what we needed to do for her? The doctor looked at Mommy and Daddy and proceeded to unload the news that is every parent's worst nightmare. He told us that Abby had a terminal disease and that there was currently no known treatment or cure. We started to cry. We asked how long and said he wasn't sure but it would probably be 6 month's to 2 years. He let us get ourselves together for a while and then told us that she was fine for now and that we should take her home and try to digest everything and then come back in a week and he would answer any questions that we had. He said to write everything down that came to us. We asked him if he could be wrong? He said maybe but she looked like a classic example and gave us some forms so she could have a blood test to make sure. We asked what we could do for her in the meantime. He just looked at us and said to Love her and enjoy her as much as possible and sent us on our way. We took her downstairs to have her blood test and had to head back to Grandma and Papa's house. Our heads were spinning and we were crying. What has just happened to us? How could this be? What are we going to tell our families? What do we do now?

When we got back to Papa's house grandma was there waiting for us. We had to tell her the bad news. Grandma cried and then got herself together and said she would watch Abby for a bit while we went downstairs to our room and digested everything. We lied down and cried for a long time. When we finally stopped and started to talk. We decided that we were going to make the best of this. We convinced ourselves that she was a good girl and a strong girl and that she had her Mom and Dad's stubborn streak in her and if anyone could she was going to make it for 2 years or even a bit longer and who knows what could happen in that time. We were going to remain positive and strong for her. We were going to Love her and build memories with her like each day was her last. Abby was going to have the best life she could possibly have no matter what it took. We were going to make the most out our time with her. We decided that if it was O.K. with Grandma and Papa that we were going to move in with them so Abby could spend lots of time with her families as Grandma and Grandpa Galbraith lived close by as well as most of her Aunt's, Uncles and cousins. Everyone was going to get to know her as much as possible. We now had the unpleasant task of telling our family and friends the bad news. First we drove out to Grandma and Grandpa Galbraith's where Grandma had the whole family meet us there. We all gathered in the living room where Daddy proceeded to tell everyone the bad news. What a shocker!. Nobody had heard of this Spinal Muscular Atrophy before. Daddy tried to answer as many questions as he could but he still wasn't exactly sure what he was dealing with either. Everyone came to the same conclusion. They weren't going to waste any time.T hey were going to get to spend time with her and get know her as best they could. They would try to be there for us and support us as best they could.Abby was greeted with a lot of hugs and kisses which she really enjoyed. We then had to head back to London and break the news to Papa. This wasn't going to be easy. We waited until Papa finished his dinner before we told him the bad news. Daddy had never seen Papa cry before in his whole life. Papa always seemed strong and in control. Papa was floored. He asked many questions and still couldn't believe it. Papa cried and hugged Daddy and Mommy. We asked Papa if it would be O.K. if we moved into his house with him for as long as Abby was with us and he said he would be very happy if we did. Daddy then proceeded to call his sister and brothers and tell them the news but kept his conversations short and didn't answer many questions but said he would get back to them with more details later. Having to hear himself keep repeating the news over and over again kept getting harder and harder. That was enough for one day. Tomorrow we would start our new life with Abby in London and we were going to make the most of every day. The next day Daddy and Papa went back to Belle River where Daddy went and made arrangements at work to spend the next little while in London with Abby. Everyone involved was very helpful. Daddy went to see a close friend and explained what was going on and made arrangements for her to look after the house. Daddy then e-mailed the rest of our friends and families as to what was going on as he just couldn't talk about it any more. They packed up as many clothes and as many of Abby's things that they could fit in the van and prepared for the move to London.

Everyone adjusted well to our new life in London. Abby was doing well she was still gaining weight and growing. She was still having a bit of a problem eating so we just fed her more often with smaller amounts. We took turns getting up with her through the night like when she was a tiny baby. It was a little tough but we didn't mind doing this for our little girl. She loved being in her bouncy chair. In fact she sat in it in the center of the table during our meals. She always had to have someone with her. In the evenings after her daddy gave her a bath she would go downstairs and watch T.V. on Grandma and Papa's big screen. We were able to make daily visit to friends and family. Abby got to meet her cousins from Oklahoma. Abby just loved the sound of their southern accents. They too were totally amazed at how bright eyed and alert she was. Abby also, got to go and see her Uncle John ride his horse Susie in the Melbourne Fair. Little did we know that the weekend of August 23-24 was going to be the last time Abby could travel anywhere. Shortly after Daddy was cutting her nails and he accidentally cut her finger. It wouldn't stop bleeding so we took her to emergency at the Children's Hospital of Western Ontario. CHWO is affiliated with the University of Western Ontario and is a learning hospital. This was going to be our first experience dealing with a hospital. First of all we had to be screened because of SARS. Then the admitting nurse asked why we had come and if Abby had any medical problems. We had to explain to her what she had and what it was. She then proceeded to take Abby's SATs (oxygen saturation levels) and told us that Abby was at 85. She wanted to know if that was normal for her. We told her we didn't know and that we didn't know what normal was. We were told her SATs should be between 95-100.As we waited in admitting everyone had to come and look at this beautiful baby girl. When the doctor came to see Abby she looked at the admitting chart then asked us some questions. One of which was "Are you related in any other way besides through marriage?" (We are not!). We thought this was an odd question and then she explained to us the long shot odds of having a child with SMA. A bandage was applied to her finger but that was the least of the doctor's worries. Abby was given a car seat challenge because her SATs were so low when she was admitted. She failed. She was given some time to recuperate and given the test again and she failed again. At this point the nurse determined that he wouldn't feel safe sending her home in her car seat and that she would be admitted until it was determined how she could be sent home safely. Abby was admitted overnight and the next day physical therapists made some adjustments to her seat. She still couldn't pass the car seat challenge but she did better so we convinced them that Abby had to go home. We only lived 10 minutes away. They gave us a few tips about what to do if Abby had problems and told us that we shouldn't take her anywhere in her car seat unless we absolutely had to. We were finally able to take her home. What started out as a cut finger turned into a 2 day hospital adventure. We were given our first glimpse of the many obstacles parents of disabled children had to deal with. Abby's problem was that when she was sitting up her body didn't have the strength to support itself and she would have trouble breathing. She was fine lying down however. We asked if there was a car bed she could go in. We were told that there was but that the Canadian government didn't approve of any on the market at this time. While we were in the hospital things started to develop for Abby's care very quickly. We were given appointments with a social worker, physical therapists, feeding therapists, a pediatrician and referrals to a few other doctors. Things that were going to be given to us sometime in the near future anyway but the ball started rolling a little faster. As we would soon come to realize and expect things would be done reactively rather than proactively. When we were given Abby's original prognosis we thought we could take our time and deal with things slowly over a couple of years. Things were still happening and changing very quickly and we were still hoping that things would soon level off and we could adjust but the disease just seemed to keep coming on strong. Hopefully it would slow down now for a bit. At least we had her home.

We decided that we wanted to get her baptized as soon as possible while she was still doing O.K. on her own. Daddy contacted Fr. Chris Gevaert of St.Michael's Church who happened to be a relative of Daddy's. Father Chris had just been transferred to London from Belle River. We explained to him about Abby's disease and how important it was for her not to get any viral infections. With the help of Fr. Chris and pastoral assistant Mary Taylor we were able to arrange a private baptism for Abby with just our immediate family. We had Fr. Chris and Mary over to the house to talk to us about baptism and about Abby's life. Mary was a big help to us. Mary answered a lot of theological questions for us and helped us to make peace with what was happening to Abby. Neither of us had been very religious people up to that point but this talk about faith really helped us make peace with our situation. It was comforting to believe and know that this wasn't it for Abby and that she would dwell amongst the angels and saints one day in a new life until we were able to be with her again. September 7, 2003 was a very special day for us as Abby was baptized by her cousin Fr. Chris. He used water from the river Jordan which was a gift from another priest who heard about Abby's story. She also had her daddy's brother Dan as her godfather and mommy's sister Jayna as her godmother. Abby looked so beautiful in her gown which Grandma Loebach made using her nursing graduation uniform. This gown was first worn by Abby's daddy and then by her Uncle Dan, Aunt Debbie, Uncle Duane, Uncle Dean and cousins Jacob, Meghan and Melissa. When Abby was diagnosed they told us she would have good days and bad. T he day following her baptism was a good day because as Abby laid on the couch that afternoon she was able to move her arms up and down which was something she hadn't done in a while. Daddy felt a great sense of peace and relief. After months of sleepless nights Daddy was able to relax and sleep believing that his baby girl would be all right. It's amazing what faith can do for you when you need it the most even though you never really knew it was there for you before..Abby stayed good and healthy through her baptism day. Abby always seemed to know what we needed from her and she would always pull through for us until we were ready to handle things. She was always a remarkable little girl!

On September the 17th things were not going very well for Abby. She was having a lot of problems feeding so we went to see her feeding specialist. At this time she was only eating 1-2 ounces at a time and only 10-12 ounces a day. We had seen the pediatrician a few days before and she said that Abby was O.K. for now but that we should keep a close eye on her and record her feeding habits and we would see what would happen and then come back to see her. Mommy and Daddy were still trying to feed her around the clock but Abby was having a hard time. We tried different nipples and techniques the feeding specialists taught us at earlier appointments but we still felt Abby was unable to get what she needed. We were also doing chest therapy on her twice a day which seemed to make her feel better (quite often making her fall asleep) but she seemed to be getting worse every day. We hoped for the best but could see the disease was again coming on strong. We explained to the specialist what was happening and she told us that we couldn't keep going on like this neither for us or for Abby and that we should start thinking about other options like N-G (nose) or G-J (stomach) tubes for feeding her. We showed her what looked like little red crystals that we found in her diaper and asked her what it was. She said she wasn't sure and since we were to see the pediatrician that afternoon that we better check it out with her. We brought Abby to the pediatrician and we were really concerned about her condition. She looked at Abby and weighed her and we told her about the crystals in her diaper and she said that it was a sign of dehydration and that she didn't like what she saw. Abby's heart rate was very quick as well. She decided that she would call an ambulance and send Abby from her office to the hospital right away. This was very scary. Here we go being reactive again. Once again on the way to the hospital Mommy had to explain to the attendants what SMA was. When we got there and the doctors examined Abby decided to admit her.

Once Abby was admitted her pediatrician came and we had to decide what we were going to do. The nurses tried an N-G tube to feed her using just gravity. The formula went in very fast and Abby brought it right back up. She hadn't been eating that much for a while and she couldn't handle that. The nurses thought she may have aspirated and they sent Abby to the pediatric critical care unit to have x-rays and to be looked at. Abby didn't look very well at all and we were afraid we might lose her. We called Fr. Chris to come in for a little support and prayer and maybe a little divine intervention as we were not ready to let her go. Abby was hooked up to an IV and the only thing we could do was wait and see if she got her strength back. After a couple of hours the nurse said she seemed to be doing better and that we should go home and get some sleep and that they would watch her closely through the night and they would call if anything changed. It was very hard leaving her there not knowing if we would be able to see her alive again but we did and told the nurse we'd back at 8 a.m. sharp! We went home to sleep although I don't think either of us did very much of it that night. We got up bright and early and were back to the hospital by 8 and the nurse told us that Abby slept well through the night and that she was doing much better. When Abby woke up we were there with her. She gave us one of her now famous big smiles and one for the nurse. Abby would be O.K. and would be sent to a bed in the regular children's ward and we now had to figure out how we were going to feed her. While Abby was in her room she was fed with an N-G tube that was hooked up to a pump that fed her slowly over a couple of hours. The doctor didn't really like this method as she was always afraid that Abby would aspirate. She felt that a G-J tube would be safer and better for her in the long run. The only concern was if she was big enough and strong enough to handle the surgery as this was not usually done to someone this small in London and she may not survive a trip to Toronto. Abby spent the next couple of weeks in hospital having tests and building up her strength waiting for the doctors decide how to proceed. Mommy slept in a cot in Abby's room and Daddy went home when Abby fell asleep for the night and came back every morning. Grandma and Papa dropped Daddy off each morning and picked him up at night and brought us supper every day. Daddy also packed a lunch every day and brought Abby some new books and toys to play with and some new clothes. This was a big help as it costs $9 a day to park at the hospital and then to eat on top of that would have been quite expensive. We can really see the need now for places like the Ronald McDonald house to help sick people and their families. While we were in the room Mommy and Daddy read Abby stories and played with her and sang her songs. We learned how to operate the feeding pump and change the formula bags. We gave her a bath every day, weighed her, did her chest therapy, learned how to change the leads for her monitors and helped the nurse as much as we could. Abby always had big smiles for everyone. The nurses soon knew them very well. The nurses who had Abby and moved to other rooms often came in to see her, say hi and receive a big smile. She was a ray of sunshine in a sometimes not so happy place. Once again Abby's visitors were limited because of SARS but her aunts and uncles came to visit her. Her grandpa Galbraith was doing chemo for lung cancer (he's O.K. now) a few floors down and Grandma and Grandpa Galbraith would come to see her while they were in. One day Grandma came in to the room before Abby woke up. Grandma told Daddy that when Abby woke up she just stared at the door and no matter what grandma said or did she just kept staring at the door. When Abby saw Daddy come in she had a big smile and said hello to Grandma. Abby's day started when her Mommy and Daddy were there with her. After many tests and consultations it was decided that Abby would get a G-J tube and an O-R was booked in a nearby hospital for her to have the procedure. While Abby was having the tests done it was discovered that she had a heart murmur and a heart defect and the doctor wasn't sure if she was born with it or it was a result of SMA because he didn't know enough about SMA. He said she was in no immediate danger and that he would do surgery and try to fix it if we wanted but we just said no. The day of Abby's surgery she was being transferred by a car seat on a bed. Mommy and Daddy tried to plead with the nurse that Abby couldn't tolerate a ride in a car seat. We were told that this was hospital policy that infants were transferred in car seats and that the other hospital wasn't far and that a nurse would be present the whole time. Mommy was allowed to go with them for the transfer and it was a good thing. As Abby's ride was pulling in the parking lot of the next hospital Abby turned blue. That was how Abby was. She never fussed or complained and seemed fine then all of a sudden she was blue. Mommy told the nurse to get her out of the car seat and they laid her down on the bed and rushed her to the O.R. Fortunately when they got there there were people there who were ready to handle this. (they thought it may happen during surgery; not before!) They got Abby stabilized and determined she was fine and that they could do the surgery. Daddy came over himself and was waiting in the waiting room when the transfer nurse came out and brought him in to see Abby before she had her surgery and then brought him back to the waiting room. The nurse's hands were trembling and she told him what had happened. Daddy will never forget the look on that poor nurses face when she told Daddy that all she kept thinking was "Oh my God, I just killed these poor peoples baby". Daddy somehow found a bit of humor in this and thanked her for her help and told her it would be O.K. and that maybe she should talk to her supervisor about updating hospitals policies before she did transfers again. She laughed a bit and said that she may never do transfers again. Abby made it through her surgery just fine and she headed back to sick kids hospital. Abby was intubated and was taken back with a nurse from the PCC unit and was taken right to PCC. We were in the room as Abby slept and the nurse said that she may be intubated for a day as she recovered and that it was up to her. When Abby woke up after a couple of hours with a tube in her mouth she tried to chew on it. She didn't seem to like it very much and the nurse checked her and thought she was doing great and removed it and she was fine.  That was our Abby. She was strong and determined and she was a little fighter. She was X-rayed to make sure the tube was in where it was supposed to be. When the doctor looked at the X-ray he couldn't tell and had to call the surgeon to make sure. While looking at the X-ray it was awful to see what this horrible disease was doing to the insides of this poor little girl. Everything was good and the tube was where it was suppose to be. The next day Abby was back in her room where she would recover for a week and would finally be ready to get back home. We made plans for VON nurses to come to the house to help us and got our own feed pump. The doctors decided that they were going to have Abby on oxygen at home as well and we got a suctioning machine.  We also had to make some very hard decisions while we were there. Decisions no parent should ever have to make. A few different doctors did a great job explaining what was happening with Abby and what would eventually happen. We decided that we didn't want her to suffer at all and that we didn't want her kept alive on machines if she couldn't recover on her own. With all of the information we were given we thought that this would be the best for her and not us and we had the doctor fill out the appropriate paperwork and we signed it. We were to keep a copy with us wherever we went in case it came to that. We were finally ready to bring Abby home.

On the day Abby was to be discharged we were all excited however the car seat issue still hadn't been resolved. Daddy told the nurses and doctors that we only lived a few miles from hospital and that if he had to he would go get her stroller (we had a double stroller that would fold down into a bed for her) and push her home if it came to that but one way or another after 3 weeks in the hospital she was going home. We said we would be happy to pay for an ambulance if it came to that. The nurses eventually found a car bed that had been at the hospital for a while and said that if Daddy promised to bring it right back that she could go home in it. She barely fit in it but it was good enough and we got her home. Once again we were amazed at the obstacles parents with disabled children have to go through. We have often wondered what the hospital did with kids with Spina Bifida or the likes. They couldn't use a car seat and they couldn't stay in the hospital forever. How did they travel? What was hospital policy for them? The important thing was that Abby was home and visitors were no longer restricted and everyone could enjoy her again. We turned the front room in Papa's house into Abby's room. We had her crib right in the middle of the room. She had her own T.V. and there was a big lounge chair next to her crib for the nurse to relax in. The kitchen was right next to her room as well. In her room we had the oxygen machine (the now infamous Herman the Hummer). This thing vibrated and made a noise all the time but didn't seem to bother her. Abby seemed very comfortable. Abby soon developed a morning routine of hugs and kisses from Mommy and Daddy and then from big Strawberry Shortcake, little Strawberry, Toby the turtle and all of the many stuffed animals and dolls in her crib and she had big smiles for all of them. Abby couldn't move her arms so we helped her and she liked the feeling of all the different toys. Abby liked to watch T.V. She enjoyed Bear and the big blue house, Tom the tractor and Clifford. She loved to see all the big things with contrasting colours. One of the therapists gave us a device called a tadpole which was a big piece of molded foam with adjustable velcro side rails which we could put her on and we used it to take her down stairs once in a while. Abby got a change of scenery and got to see her friends on T.V. life-size on Papa's bigscreen. Abby had a nutritionist come in and see her at the end of the week and she was now gaining weight and seemed to be doing very well. The only problem that we had was that we were unable to hold her. She just never seemed to be able to tolerate it. We would hook her up to the SAT monitor and try holding her and in no time we could tell she was really struggling even without looking at the monitor. This has got to be one of the hardest things any parent could have to live with. Our baby girl was right there and we couldn't hold her. We kissed her and wrapped our arms around her while she was lying in her crib. We held her hand and she was still able to squeeze our finger but we couldn't hold her. With the nurses help we constantly tried to come up with ways to hold her. One of the therapists said that she would even try to make a body cast of her that we could pick her up with and that would hold her stable although she was never able to make it on time. We tried to encourage people to come visit our little angel while they could and she had many, many visitors. She especially loved to visit with her cousins and other children who came to see her. The nurses that came in to be with her overnight were incredible. They seemed to genuinely love coming in to be with her. They talked to her and played with her all the while doing there business and recording things for us and telling us how she was (medically). We tried not to get too emotionally attached to them but how could we not as they were all so nice and did such a good job with Abby. They seemed like family.

Tuesday October 21,2003 started out like any other day. The nurse said that Abby had been a bit restless through-out the night and she was sweating a lot. She had been like this for a couple of nights but seemed fine during the day so we thought (hoped) that maybe she was just cutting a tooth or something. We needed to get some formula and diapers and a few things so we decided that we would head out to Walmart in the morning while Grandma baby-sat Abby. While we were there we bought Abby some clown hair and a costume so we could dress her up for Halloween which was coming shortly. After we were done Daddy tried to get Mommy to go out for lunch, as it had been a while since we went anywhere or did anything. Mommy felt that we should get home to Abby for some reason and we went home instead. When we got home Grandma said Abby seemed O.K. but she was really hot and sweating a lot and she had to change her clothes. Grandma also took some pictures of her. When Abby finished her cycle of feeding we decided that we would look at her dressing around her tube incision. It was a little red so mommy put some ointment on it. We were giving Abby a rest before we started a new feeding cycle. Abby got really restless and fussy which was something she never did. She soon started panting and seemed to be struggling. We weren't sure what was happening. We tried turning her oxygen up and suctioning which seemed to help a bit but she still didn't look good. We pumped her legs a bit and talked to her but she still wasn't coming around. At this time we noticed that there was some blotchy spots forming around her tube incision. We had planned to have Abby pass away at home with us but we were definitely not ready. We called 9-1-1 thinking and hoping that maybe the blotchiness was just an allergic reaction but it was spreading all over her body. (We later learned that this was a sign of oxygen deprivation.) She didn't seemed to be responding to us so we turned up her oxygen again and she came around but still didn't look good. The ambulance soon showed up and Abby was somewhat alert so they took her to the hospital in mommy's arms. When Daddy got there Abby was in a bed and stabilized and SATting at 96. She had some tubes and machines hooked up but the big smiles weren't there. Daddy gave the nurses the D.N.R. papers he had for Abby. Mommy and Daddy held her and kissed her and told her that they loved her. Once again our courageous little girl held on for us so we could get her to the hospital where things would be simpler. Abby always seemed to know what would be easier for us and did her best for us. Shortly after Abby's SATs just dropped all of a sudden. It was obvious by the look on her face that she couldn't keep going on her own. Daddy picked up Abby and held her and the nurses guided him to a private room. They asked what else we wanted them to do and we said nothing and to just to take all the tubes and wires off her. Daddy held her for a minute and then gave her to mommy which is where Abby quietly fell asleep in her Mommy's arms and that is when she got her wings. Abby was an angel dwelling among the other angels and saints.

We had her funeral on Saturday and used the "bereaved parents wishlist" as her eulogy. She was cremated so that she could always be with us as we are young and didn't know where we were going to be in the future but knew she had to always be with us. Abby's life was short but she touched many lives during her time here. Nobody will ever forget her big smiles and even though not a single word came from her mouth she spoke volumes to a lot of people with her big beautiful expressive eyes. It was always easy to tell how smart and inquisitive she was and how she was feeling just by looking at her. Our home is now filled through-out with many pictures and angels and memories of Abby. Even though things didn't turn out like we hoped we never regretted having her for even a second. In her short time here she enriched our lives so much and made us so much better people. We will love her forever and cherish her always.

We would like to thank so many people for their help and support through out our short time with Abby. First and foremost are our parents John & Blanche Loebach and Jack & JoAnn Galbraith. To our brothers and sisters John , Jamey & Joanne, Jayna & Fred, June & Tom, Dan & Christina, Debbie & Mike, Duane & Laura, and Dean & Joanna. To Abby's cousins Brittan, Ian, Hayley, Megan, Bailey, Logan, Nolan, Amelia, Jacob, Meghan, Melissa and Trevor. To our many aunts,uncles and cousins and friends who through short visits, phone calls or e-mails helped keep us going. To our friend Sharron, who did an amazing job of taking care of our home and collecting our mail and keeping us up-to-date on things at home while we were in London. To Lori, for being there for mommy and coming to the hospital and making Abby laugh (a memory that will never be forgotten). Our social worker Liz Taylor and all of the doctors, nurses and therapists at Sick Kids Hospital in London. A very special thank-you to our VON nurses who came to the house. Linda, Susan, Maria, Mel, Debbie and Melissa who's contributions to Abby's well being were priceless. Also, to Fr. Chris and Mary Taylor whose guidance and support was invaluable. To our new friends Bettylou Ross, Garda Markham , Krista and Janne Haapalainen (www.our-sma-angels.com/jamie) and all of the members and families of SMA Canada for all there help and support in coping with our loss and our life without Abby. Last but not least, a special thanks to Laura Stants for providing us with this space and helping us with this site so we can share our Abby with the rest of the world.

Dave & Jennifer Loebach