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Tuesday, February 12, 2008

Well let's see ...........I'm way behind. Hey,at least I've been updating the pictures. It's been quite busy between the holidays , multiple hospital visit's and Mr. Brody. When I last left off Alison was sick, she went to the doctor the next day and was on antibiotics for ten days. She cleared up while she was on it but went right back to being sick when the antibiotic was finished. She was due to go to her regular ENT appointment so I just waited the day to go there . He put her on a different antibiotic since the first one they gave her twice didn't work. She was fine on that but as soon as it was finished she got the cough and secretions right back. He really didn't have much to say about her trach except to give her the whole year before making a deceision about how to proceed. So we have to go back in May. So a few days after the antibiotic finished she was sick again. She didn't have a fever but had a rhaspy voice and ton's of secretions. I took her to her doctor and they deceided to do a culture since we seemed to be chasing our tails with it.She had pretty much been sick since august and now it was november. He did that and wanted us to try to hold out til it came back to give her any other antibiotics, which would be two to three days.He said if she started to run a temp or had any respiratory distress that we would have to do something sooner. That night she crashed. She started having tons of secretions and a fever that wouldn't come down. It was staying between 102.6 -103. Around 9pm she started having so many secretions within an hour her whole stoma was red and she had a cellulitis of it. She was really breathing heavy so I took her to the ER. They didn't feel comfortable sending her home between her history and the way she was breathing so they called her doctor and he admitted her. We had to stay the night in the ER because there wasn't a bed in peds. They started her on IV antibiotics which is what she always winds up needing when she gets a trach infection. It happened over Thanksgiving so the culture took longer to come back. She had three days of an antibiotic then they got the culture back and found out the specific antibiotic for what organism she had (strep pneumonia) so she had to stay for three days of that antibiotic. So that's where we spent our thanksgiving. We left there after six days. I told Tom not to come down that day because I had the car there since I drove to the ER that night myself. When I came out after we were discharged the car wouldn't start. For some reason the battery had died so I had to call AAA to come and jump start me before we could go home. We had gotten Brody in the begining of Novemeber so Tom had to run home constantly to let him out. Alison was so mad one day. Her doctor came in and she was half asleep , when he walked in and said "I want her to stay one more day" then he woke her up and she was crying to him "I'm going home to see Brody Vom Buflodddddddddd!!!!!!" She was so mad. Needless to say he didn't know quite what to make of that. We were home for an hour and Brody was still whinning . He was nuts. We would call and talk to him on the phone everynight and he would look at the phone and tip his head then bark and whine.
After we got home she did good for awhile . She went back to school and was liking it again and doing good.She had a great Christmas and got lots of toys as did Brody and the kitties. I didn't even have them put away yet when she started getting sick again the end of january. This time she had a fever of 102-103 I took her to the doctor and she said that both her ears were red so it was back on antibiotics. After a week of that she started having a cough and secretions but no temp since being on the antibiotics.It was a sunday night, so monday it was back to the doctor . Luckily it was the same doctor so she knew that she didn't sound like that a week ago. She was concerned about her having a respiratory infection and put her on a second antibiotic. She said she was on call that night and to call her if she developed any distress or other problems. So as usual a few hours later she has a temp of 102.6 and was starting to have some respiratory distress. Well I knew if we didn't go then it would be a 3am ER visit so I called her and told her. She wanted us to go to the ER for an evaluation if we thought she was worse. I'm not really sure why she didn't just admit her directly to the hospital but it probably had something to do with the fact that she would have to come in and see her if she did. So she was having more respiratory distress, her sat's were down around 89-90% , she usually runs around 98%. We went to the ER and that was a dissastor. I know they were busy but it was a total waste of everyone's time. We got there around 8:30 at night and didn't get out til 2:30am. We waited 2 hours in the waiting room with her sat being 89%. The triage nurse was very nice and thourogh but that was about the best part of the experience. The nurse who was calling people in was barking at this lady, I don't know how she kept from telling her off. When she called us she was "are you mom and dad?" I was waiting for her to bark at us and I was going to blast her after waiting there for two hours for nothing. But she didn't say much more except to tell Alison something to the effect that "either you take it from your mother or 'I' will give it to you" about her tylenol .Luckily after that she was gone for the night.The doctor was down right scary , her eyes were all blood shot and her hands were shaking. She didn't act like she had a clue. She ordered a breathing treatment, an x-ray , a blood count and a blood culture. She never asked any history from us , I guess she just went with whatever the nurse wrote. She did listen to her lungs. About three hours later they told me her doctor was on the phone and wanted to talk to me. She asked me if I felt comfortable taking her home since her sats were RUNNING 93%. What a joke , they only took one 5 hours prior and it was 89%. I told her this and she said they told her it was running 93%, then she said well since her temp is down if they take it and it's 93 or above will you be ok to take her home. At this point I felt I was fighting a loosing battle here and just wanted out of there since they weren't doing anything to help her.She was on two antibiotics at this point and was running a temp of 103 still. The doctor also told me that they checked her for RSV, and did a culture. Another lie, I never left the room those things never happened. So she said that they would do it before we left. We were to come back to our doctor's office the next day at 10 and it was already after 2 so we agreed. They did do the RSV test before we left , the culture was never done. They came in and put an adult probe on her pinky finger and said "there her sats 93, she can go home". The nurse then told the doctor that he was unable to tell if it was accurate because her breath sounds were so coarse he couldn't count her heart rate. She just said that she could leave. Needless to say when we got a form to evaluate our ER experience last week I was less than kind. I only wish I could get away with treatment like this at work. The next morning after a few hours of sleep we went to her regular doctor. He wasn't much more aggressive. By this time she was breathing around 50-60 per minute (normal people breath around 20)he asked me what I thought! I told him she was working really hard to breath and was still running a temp, her sats were down still. He looked at her and said "yeah she's working pretty hard" No shit Sherlock! Then he said "I guess we'll have to admit her" like it was a big effort on his part. He then proceded to tell me that she had RSV which is what causes the common cold in most people but is very dangerous to premature babies and kids with lung issues.It can kill them. When I said "she does!" he replied "yeah but it's no big deal". Well two weeks in the hospital and a helicopter ride later we're thinking maybe it was a big deal.The past three years she got a monthly vaccine against RSV because it can be so dangerous to her but since her trach is out the insurance wouldn't pay for it anymore.It's a couple thousand a month. So instead of an 8,000 dollar bill they probably have at least a 50,000 dollar one. So she had to be admitted to CMC because Moses didn't have any beds. She got progressively worse and worse there. She was there over night , she had a twit for a nurse there. She just kept breathing worse and worse , when she was up to 80 breaths a minute and only in a croup tent at 30% oxygen she was only sating around 84-85% so then they stuck another oxygen tube into the tent and put that at 15 liters or so . But that only helped if her head happened to be right in that spot. At one point her respiratory rate was up to 120 per minute. 100 more than a normal person. I went out and got her nurse to tell her that now she was literally breathing over 100 times a minute. That's two breaths per second. There's no way you can maintain that for very long. I was really worried she was going to tire and they wouldn't be able to get her intubated. As it was they don't have a pediatric vent there so if they tubed her she would have to be sent out. She should have been tubed there's no doubt in my mind. They just kept pushing the envelope. So anyway she comes in the room and looks at her, She then turns to us and say's "she's breathing 120 times a minute". We were like "yes" . Then she proceded to say "well the doctor did write an order to call if she was breathing more than 80,,,,,,,,so I guess I'll call him" . I about died ! I guess if he hadn't wrote the order she wouldn't have bothered to call him with that. So after that she came back and said he changed her breathing treatments from every 4 hours to every 2 hours.I guess he thought she could maintain this for hours til she got a breathing treatment. She sort of corrected herself after her temp came down some to where she was back to between 60-80. So we gave them a little longer. By morning she wasn't getting any better, a different doctor in the group came in and took a look at her. She thought she was really congested. I voiced my concerns to her that she would need to be intubated and was there someone there that would be able to get a tube in her because she was sounding more and more swollen.Even when she took a breath in you could hear how tight she was getting. She agreed that she would not be able to tolerate this for a long period of time. Now at this point it's tuesday and we are already into this two whole days. So she added some steroids and said we'll watch her. When Tom arrived we talked about it and agreed we wanted her out of there. She was back to breathing 80-100 again in the afternoon was just tiring out. So I made them call the doctor again. It was the same one who was there in the morning and I told her I didn't like how she was looking and I thought she needed to go out to her pulmonologist in Danville. She agreed that it was a good idea and said she would call them. A few minutes later they came in and said that the helicopter would be there in about 6 minutes. That stinks because I can't go with her on there , she has to go alone but I think it was best to get her there and get treatment faster. I thought they might tube her when they came for the ride but they didn't. The first thing they did though was give her some actual oxygen. They put her on 100% non rebreather mask. Her sats then came up to the 95% range.Amazing what a little oxygen can do. She didn't want to go of course she kept telling them that she didn't need it. She had her little Jasmine doll clutched in one hand or the other for the two strait weeks she was in the hospital. She refused to put it down no matter what was going on.If she dropped it in her sleep that was the first thing she said every morning "where's Jasmine".Now even at home Jasmine is usually in her hand although she will put it down now that she's home. So they flew her to Danville. Tom and I had to drive down which took about an hour and a half. She was admitted to the pediatric intensive care unit. There she had the same nurse who had her when she was a student and also in april when she had her trach out.She was all tucked in when we got there with this really cute little quilt shaped like a dog. She was sleeping . We couldn't believe it when we walked in ,she was like a new kid. Her respiratory rate was down to 40 or so , she was breathing pretty easy. We were like "what did you do to her". They were in the process of giving her an 8 hour long respiratory treatment of albuterol.Plus she had the 100% oxygen on.She looked Soooooooooo much better it was unbelieveable. When she heard us she woke up and she took one look at us and said "I was so worried about you two , so very very worried" It was heart breaking. The nurse said that she kept telling them "I need my family , where are my family". I was glad that she had that nurse though cause she may have remembered her since she just had her in April and she liked her. The only downside was they made her be in isolation which meant we had to wear a gown , gloves and a mask the whole time even when I slept in there. But it was certainly worth it. She did really well , the next day they were able to move her to a regular room.We talked to the resident when we got there that first night and he said that they would consult her pulmonologist. She was admitted under the medical service and they were suppost to consult pulmonary.Apparently that never happened. I was wondering why I never saw anyone from there. The next day I ran into Dr. Perez in the hall he asked me what I was doing there. Hmmmm I told him and asked him if they consulted him like they were suppose to he said no.I told him what was going on and he said that if she was there he would definately had tubed her because she wouldn't be able to maintain that rate.He stopped to look at her anyway , she was sleeping though he said he'd stop back again. That night she started to get crappy again. It was about 7:30 or 8 at night. I knew she was due for a breathing treatment soon so I was just trying to hold out.Well after about an hour or so I was thinking they were just busy, another half hour or so went by and still no therapist. She was really starting to breath hard so I asked her nurse about it. She said she would check. Around ten she came in and said the treatments were discontinued! I found this odd, she said she would check on it.That was the end of her . After 11 the next shift came in I asked them about it. Of course she didn't know anything about it but said she would check. Alison was starting to breath harder again.She never came back with an answer either. I fell asleep for a few hours around 6 the resident was in. I asked him about it.He told me that kids with RSV don't need respiratory treatments , that it doesn't help at all. Now this is obviously not true in her case since that is what turned her around to begin with. So I asked him about the pulmonary consult I was promised twice now. I told him that was why we had her sent here to begin with. So he said he would mention it at rounds. By now Alison was a mess again. Her respiratory rate was up to 80-100 again and she was really working hard. Next person to enter was Dr. Perez. He thought she looked pretty bad , when he told me what he wanted to "add" to her respiratory treatments I told him she wasn't on any. I thought his eyes would pop out of his head! I told him she hadn't had one since 5 the night before and he thought I meant that they just stopped the atrovent. When I said no she hasn't had anything he was funny . He was just saying "NO,NO, NO , No that can't be". I told him I asked two shifts and then was told by the resident that kids with RSV didn't need them. He was mad, he said normal kids don't but normal 4 year olds don't have a problem with RSV. She has lung problems she can't be treated the same as healthy 4 year olds.He left immediately to talk to them and get the treatments started. This time it took a 24 hour long albuterol to get her back to where she was.He was off the weekend but sent another doctor covering for him in to check on her. She was very nice. She told me that Dr. Perez told her what had happened and she promised they would not stop her treatments again. She said he was worried about her because she looked so distressed yesterday and he wanted her to check on her.After that some resident or doctor did stop her treatments once again and she started to relapse again. I got them to call pulmonary back in and they restarted her treatments and again told them not to stop them EVER! She took along time to come along . She was stuck on 50% oxygen for days. Everytime they tried to turn her down she would drop her saturation and become distressed. She basically ran a temp of 102-103 for the first week and a half that she was there.She just didn't seem to be getting better for a long time.She was only able to get off the 50% oxygen 3 days before she came home. She didn't eat much for the first week and a half either. Around thursday before she came home (monday) they started her on some peripheral nutrition. She lost 1/10th of her body weight while she was there and still isn't eating the best although she is getting better at that. This is probably the sickest I've ever saw her. I don't think I said earlier , she had developed a viral pneumonia from it. The poor kid was so tired of being poked and prodded. They did blood work every day not to mention the IV's all the time. Two days before we left her Iv came out and we opted not to put it back in since she was just getting minimal fluid from it and was starting to drink better.The only problem was she still needed to get two more days of her antibiotic course. So she had to get two shots at the same time each night.She was really good about it she didn't really care about the needles she just kept giving them her favorite line. "You give me back my leg". Everytime someone tried to do anything with her she kept saying they were taking her leg or arm and they better give it back.She had tons of funny lines. At first at CMC they used regular needles to do things like labs and IV's. She kept telling them "Don't point me , I don't want to be pointed anymore".When we were at Danville they did finger sticks and used this little thing that looked like a pen to collect the blood.So she told them "don't write me , I don't want to be writted". She also had to wear a percussion vest. They resorted to this when she didn't seem to be getting any better. She had to wear it for ten minutes four times a day. She HATED it. She would yell and cry the whole time.It would basically shake her to get the secretions moving in her lungs so she used to yell "you stop shaking me, I don't want to shake anymore". Then she tried to manipulate them to get rid of it. She kept saying it didn't fit her that it was too small, then she told them to give it to the babies. The girl told her it couldn't be used on babies so the next time she came to do it Alison told her that she was a baby not a big girl. I think her most frequent line was "weave me awone". The poor kid was so tired . She was woken at least every two hours for 2 weeks. She was exhausted . It's no wonder she didn't feel like eating. She just got up everyday and moved over to my bed and went back to sleep. She kept wanting to do 'homework' as she was getting better so I called her teacher and she sent her a bunch of work sheets and books to work on.I was so sick of those same books , she made me do them over and over. We kept her home the rest of the week after she came home. She started back to school today. She was excited to go but when we got there and I reminded her that Jasmine couldn't go she wasn't too happy. But she went and was fine once she got there. There is a new student in her class so she was excited to have a new friend. She's been crying for weeks because she doesn't have anyone to play with.I've had to be Jasmine's prince for weeks now.
We got Brody back in november. The poor thing just gets into the routine and we wind up back in the hospital and throw him all off. He's been doing great even if he does drive me nuts. He's super attached and cries his head off when I leave for work. He wants to go everywhere we go and tries to squeeze out the door if your trying to leave.I try to take him to and from school with her all the time.He loves to go but barks when I get out of the car to bring her in or get her. The kids used to like to see him when he was little. Sara would get so excited when she saw him waiting there . She would just jump up and down and shreik. I haven't been waiting outside too much lately with the weather though so she hasn't gotten to see him lately. He has a bunch of friends downtown who know him already. One lady I didn't even recognize knew his name when I was walking him last month. I try to walk him when Alison is in school ,it's so much easier. When she comes she wants to help walk him and of course can't really hold him so we have to hold him too and then she's mad cause she wants to do it herself. Not to mention it's difficult to train him when she has her hands on the leash. He just finished his beginner class in obedience training. He did really well in that . He got messed up for graduation though because I did all the classes and then for graduation I was in Danville with Alison so Tom had to take him. He did ok but would have done much better if he wasn't so out of his routine. He was really crazed when we got home finally after the two weeks.We called him all the time he was really missing us.Tom said he used to look out in the driveway for us all the time. Alison used to go to all his classes too, she was very upset when she missed his graduation. She was crying the week before because she was missing Brody's school. I couldn't convince her that he didn't have school that week even though it was true. She used to want to be his teacher. When we came home from class she would line the cats up and "teach" them. I know the poor cats, but hey they steal her toys all the time. Brody's five months old now and 51 pounds. His baby teeth are all falling out and I'm always covered in blood from his mouth. The poor thing his gums are all swollen. He's doing well with the cats. Rudy and Tom sort of play with him til he gets a little ruff then they run, but they go right back and tease him. Brad is starting to get better , now he just stands there and hisses at him in stead of smacking him. He likes to be a watch dog if someone rings the doorbell. The UPS guy was afraid of him the other day which is kind of funny because he's really a big baby. As soon as the guy petted him he was all goofy.However when I get home and try to get in the door I have to wake him up to move out of the way so I can get in. I guess he doesn't care who comes in as long as they don't ring the door bell. He loves to play in the snow and will run back and forth like a nut when he goes out and there's a few inches.
I can't think of much more. Next up is her Cardiology appointment in March.And of course she's all excited about her up coming birthday!

Sunday, October 14, 2007

Well, we had a great vacation, 2 weeks at the shore. The weather was great! It was in the mid to upper 80's the whole time . I think we had about 10 minutes of rain in the two weeks. Alison loved the beach and had a love/hate relationship with some singing gorilla's on the boardwalk. They were at a minature golf place, they looked like Planet of the Apes guys. They were above the place in a suspended helicopter. They sang songs and played the bongo's. There was also a huge gorilla head that spit water out and made noise. She wanted to go see them everynight but then would cry that she didn't want to see them when we got there. I told her to just turn her head and not look at them but she kept sneaking a peak. Then she would tell me to be quiet because they were sleeping (they were only on on the weekends).So every night we would have to walk to that end of the boardwalk to see if they were sleeping then she wanted to go home.Once in the truck she would always want her brochure from the place with the picture of them and she would look at it all the time. A couple of nights she woke up crying and when I asked her what her bad dream was about she told me it was about gorilla's. She's still talking about them a week later. She asked about Cody a few times when we were there . Mostly when we were on the beach. I guess since he always went to the beach with us she associated that with him. One day after playing with a boxer on the beach she said "I miss CoCo Bean, why can't I play with him anymore? I really really want to see him". So needless to say I was walking down the beach balling. We also did some other things while we were there. I figured since we took her out of school for two weeks she should do something educational. So I took her to the museum at the library and we went to the Atlantic City Aquarium where she got to see a 100 pound sea turtle and some clown fish like Nemo that she liked. We also went to Margate to see a 65 foot tall elephant named Lucy that was built in the 1800's. It's now a historical site. You can go inside and look out his eyes at the ocean. She really liked that and kept wanting to go back everyday. We also went on the Cape May-Lewes ferry over to Delaware one day. The trip out was a bit rough but by the way back the sea had settled down and we had a really nice sunset cruise home. Alison was a little cranky the whole vacation and we were blaming it on her not taking a nap for the whole two weeks but now I think it was that she never really got better. On the thursday before we left she had a fever of 102 and her eye got all red and swollen. I took her to the doctor and she had a sinus infection that turned into pink eye. She didn't have any drainage or anything from it but they said it was pink eye. It was practically gone by time we got to the doctor that day so I don't know. Anyway they had her on antibiotics for ten days after that. She gave me an extra prescription in case it didn't clear up so I could get a refil while we were at the shore. Well after the 10 days she seemed fine. The coughing and sneezing had stopped, no fever and her eye was fine. So that was the end of that. Well after we came home she started to get red cheeks again this week, with a cough. Now tonight she had a fever of 102 again. The right side of her face feels hot even when she doesn't have a fever so I think that it probably never cleared all the way up and just festered. But it's been two weeks since she had that round of antibiotics so we probably have to start all over again. We were suppose to go to the neurologist tomorrow but I think we'll wind up canceling that, unless he doesn't care if she has a temp, and going to the regular pediatrician. We have to go to the ENT in the beginning of November. I'm not sure if he'll make the decision then about closing her trach or wait another six months. We don't see where it has changed at all though in the past six months so I think they will have to close it surgically.
School is going great. She loves it. There were five kids in the class one boy and four girls but we haven't seen Michael since before vacation. I don't know if he moved away or quit or what. I asked her where he was and she said "he died and went to heaven" . When I asked her who told her that she said she just said that.I kept telling her no he didn't and she kept saying "yep he's gone with God, he got sick and went to heaven". I think she's had too many pets die recently, between Cody and the goldfish. Then while we were on vacation Penny the crab died. I have no idea what happened to her, both her and Mac were very active the whole time we were there. They loved the heat and humidity and were climbing all over and swimming in their pond. The day before we left Penny came out of her shell and wouldn't go back in. About six hours later she was dead. Usually they act sick or something but she was doing great for two weeks there. Anyway we added two more crabs Periwinkle and Shriver to the family (before Penny died).
We are suppose to go to the pumpkin patch with school tuesday. I hope she's feeling alright to go. Mrs. Murphy asked me to go with them. It should be fun. She has some homework this year and tells Tom that she has to do it. She gets a book every week to borrow and read thru then has to bring it back for a new one. They rotate thru all the kids so when they read it in school they are already familar with it. She "reads" them herself most of the time. I think she has them memorized. She has to pick leaves for october's projects this weekend. They are not very nicely colored this year though.
We are getting a new pup in three weeks and she is VERY excited.Tomorrow she wants to go to the pet store after the doctor's because she wants to buy Blue Boy Brody (as she calls him) something. She's already practicing what she's going to tell Santa to bring him. She has Santa bringing everything at this point. The same line follows ever single commercial on TV .........."maybe Santa will bring that".She looks at the web site with the puppy on it and she knows all of the sisters and brother. We tease her and say "is that him?" and she'll say "NO that's Orange girl!" . She can name all seven girls and two boys right down the list. She tells everyone that she's getting a puppy. This past week twice when she woke up in the morning we asked her if she had any nice dreams and she said yes. We asked what the dream was about and she said "the puppy".

Saturday, August 25, 2007 9:29 PM CDT

Well it's a very sad day in our house today. Cody Cody Coco Bean, our dog, passed away this morning. He hasn't been feeling well for about 20 days. The first time he went to the vet, because he couldn't get up from a lying position, they gave him a shot of a steroid. He did really well after that. Within an hour he was getting up better and the next day he was able to jump on and off things and play in the yard with his ball. Over the next two weeks or so he was getting progressively worse , back to where he was as the shot wore off. We went back on wednesday and they gave him another shot of longer acting steroid plus steroid pills to take. For some reason this time it did absolutely nothing. On friday night after going out he just couldn't get back in , he just laid down in the grass and stayed there. We had to carry him across the yard and into the house. I sat up with him all night and by morning he had passed. He didn't seem to be in alot of pain thank God, just some rapid breathing and some vomiting. Unfortunately he was wide awake to the end. He even gave me the usual paw . He always had to have the upper paw and whenever you were touching his paws he had to put his other paw on top of your hand. Alison seems to be ignoring the whole thing right now. She knew he was very sick but didn't really want to hear it . She just kept saying "he'll be ok". When I told her that he died today she just walked away and hasn't mentioned it or him since. She has had some fish who died , named Mommy ,Daddy and Baby fish, so she frequently says they are in heaven with God and when she hears of anyone dying always says they are with Mommy , Daddy and Baby fish in heaven. I guess we'll just have to wait and see what happens.I'm sure she'll mention it during the week when I'm at work. Her and Daddy have a routine where they go outside when I'm at work and she always insists that Beany go out with them. She didn't want to hear he was sick and didn't want to go out , she screams and cries that he has to go out with them. I guess time will tell.To make matters worse friday night our pressure tank from the well blew a hole thru it and water started to flow into the basement. So we didn't have running water, luckily they were able to fix it today in the midst of everything.
I realize I didn't update this in quite awhile. So much has gone on , we've been busy. School went very well. Alison loved it and cried every single day when she had to go home. There were two little girls in her class and six boys. She talked about the girls constantly. Their names were Sara and Brianna but she told us they were Sierra and Banana! However she wasn't the only one who didn't know names, when I was walking her to the gate one day we passed the little school vans and I heard the one little boy yelling "Alexson is here , Alexson is here". The van ladies were just looking at each other saying "who is Alexson?" It turned out to be her little friend Thomas. I think he had a crush on her because he would wave hello and good-bye frantically from the van at us all the time and would run out of school and over to me to tell me what "Alexson" did that day.Whenever I asked her what his name was though she always said "I dunno". They had recess everyday for about 15 minutes and I saw her climbing alot on the jungle gym and she has gotten alot better at it. We had her at the park one day and she is much more confident and less clumsy. She also brought home alot of nice things they made, like a fish mobile and beaded necklace. At the end we got a letter telling us what they did all summer and one of the things it said was "learned the days of the week" . I was like "she doesn't know the days of the week" so I asked her if she knew them and she proceded to sing me a cute little song about them. I guess I just never asked her them before. They also said she improved her "What's this?" object identification to 100%. She still gets speech therapy for some reason, they said she didn't need it and they weren't going to give it to her anymore but for some reason they still are. I don't think she needs that at all since she doesn't stop talking all day long and uses words like appreciate and complicated. She was looking at pictures of Aunt Kelly when she was little and in dancing school the other day and said to me "hmmmm very interesting". She's like an old lady some days. She gets occupational therapy too. She is working on using scissors but needs to work more on that although when she grabbed mine out of the drawer the other day she did just fine opening them. She knows alot of animals and their sounds too, the other day when we were at the libary a lady was looking thru the puppets and said "here's a ______" Alison spun around and said "no it's a skunk" and it was!
She went to the Wayne County Fair and to the Harford fair on thursday and saw alot of animals. She really loves horses and gave them all her own names as they were practicing in the ring she didn't want to leave there. She went on rides at both and liked this little rollercoaster like thing. It was a big alligator head. The last ride of the night she got to sit in the front car and was petting him! After her nephrology appointment the other week we went over to Knoebles (amusement park) for a few hours she went on everything she could. She was crying to go on the roller coaster there but she was too small and they wouldn't let her on. She even wanted to go on the big wooden one. She was allowed on the ferris wheel and liked that. She's not afraid of any of them. When she went to the Clifford Fireman's Picnic last year she went on the train but was not thrilled and was leary of everything else . This year she went on the train, firetruck and hayride and then told me she wanted to go on the boat. I thought she meant the little boats that go around but she got mad , she didn't want them, she wanted the motor boat that goes flying around the pond.So I took her on and she had a huge grin on her face the entire ride.
On the medical end she went to see the nephrologist about 2 weeks ago.He did and ultrasound in the office and said her kidney looked "perfect" which was great news. She really liked him, they talked for a long time. Our appointment was for 2 but we didn't get out til 5. She invited him and the medical student Sara to go to Knoebels with us. She was coming out with some funny things and he was cracking up. Then she always looks at you so seriously and say's "what's so funny?". That only made him laugh more. A few days later we had to go to Philly to see the orthopedist. He always likes to see how her thumb is working so he makes her pick things up. He noticed swedish fish in her bag. He asked if he could have one and surprisingly she said yes. Usually she's not very good at sharing so this was shocking. Well he asked her to get them for him, so she picked them up and looked in the bag, which was half full and said "Sorry , there's none left".!She's such a coniver. But she's very polite about it. She always says sorry if she bumps someone in the store or God Bless you if they sneeze .She gets louder if they don't answer her. She doesn't have to go back to either doctor for a year. In a week or so we have to go to the Gastroenterologist then I think we are done til after vacation.
Tuesday starts the school year and this time she goes four times a week instead of two and unfortunately for me a half hour earlier.I'm sure she'll love it because she has been singing songs about her teacher Mrs. Murphy for week's now. She really likes her. The letter we got said that there are more girls than boys this year so she'll like that. That's all I can think of for now. Til next time........

July 7, 2007

Well our first day of school went pretty good. Alison started on Thursday , July 6th. She didn't go to bed until 2am the night before and then had to get up at 7:30 so I thought it would be dissastrous , but it wasn't. She was excited to be going and got ready without any trouble.The night before she said to me "Mommy I wish you could go with me" so I wasn't sure what would happen the next morning . When we got there I didn't know where to drop her off so I went in the visitors entrance and asked at the desk. The principal was there and she went right in the office and told them her name. They said someone would come out to get her. Mrs. H. came out and asked her if she was ready.I gave her a kiss and told her I would see her later. She started to walk away with Mrs. H. then turned around with the bottom lip out and I got the big eyes and "mommy?". I said I'll see you later, and Mrs. H. said "we're going to go meet the other kids now". So she just walked away and I heard her say "mommy will be right back". That was it. I had to walk right back in because I forgot to ask where to pick her up at and she was walking down the hall with Mrs. H. and I didn't hear any crying so that was good. I sat in the car and waited. At one point I saw about thirty kids come out on the playground and they were wild. I was hoping this wasn't her class. Thankfully,I didn't see her there thought. A half hour later they were being called to line up to go back in. I looked back up from my paper and there was Alison. Her class came out to the playground next. This part was very nerve racking. At first she was just running around but then I couldn't spot her .Next I saw her sandals swinging on the swing. I couldn't see the rest of her but I saw her shoes and there's only 9 kids in her class.I was a nervous wreck, they are just regular banana seat swings which she has never been on. I usually put her on the baby ones because I don't think she has the hand strength to hang on for the other swings. The kid next to her was flying I could just picture her getting off and getting hit with the other swing. I'm not sure how she even got on , one of the teachers must have put her on because they are about two and a half feet off the ground she would never be able to get on herself.After that fiasco I was relieved to see her back on the ground running around. Next thing I see is her climbing by herself up to the top of the platform with the slides and climbing things. It's about five feet off the ground. She was up there walking around for a little while I don't think she knew how to get down.I'm not really sure how she did get down. She went down the other side where I couldn't see . I'm not sure if she went down the slide or someone helped her.She was only out there fifteen minutes but it seemed alot longer. About a half hour later they got out of school. When she came out she didn't see me at first , the teacher was taking her out by the hand. I'm not sure if it was just because it was her first day or what. The other kids looked like they had been there before , they knew where to line up and stuff. Anyway I think the real reason was probably because she didn't want to leave. When they opened the gate and she came out she gave me a hug then started crying that she wanted to go play with the kids. She then ran back into the school yard and tried to get back to the door. She kept crying that she wanted to go back to play with the kids. She was yelling for Erin , she tried to get on the "School Student" Van . They didn't know any Erin so I'm not sure what she was talking about there. She came out without her knapsack or lunch box too. That's why I think she was probably refusing to leave the teacher brought them out. She left bawling her eyes out because she wanted to "go to cool with the kids". She had a note in her knapsack that said she did "fairly well for her first day" and that she didn't want to stay with the group but she liked coloring and recess. I did see her run right in with the teacher called them from recess. Some of the other kids had to be carried from the slides. She probably just wanted to go back to playing with the doll house. She hasn't stopped talking about it since. She mentions everyday how she has to go play with Sierra and the doll house. I'm not sure if that is the little girls real name or just Alison's interpretation of it. There are only two other girls in the class. I thought they were all going to be around the same age but it doesn't really look like they are. Most look about 4 but one boy looks about 6. Then there is a little guy who doesn't look more than 2. Alison looks like the second youngest to me. She goes back on tuesday.
Yesterday she went to Grandpa Green's birthday party. She had fun with cousin Kim and then Joey showed up so she harrassed him for awhile. He was asking to go home so now she immitates him all the time and comes up to me and says "mommy can we go home now" even when we are home. Grandma gave her two fairy costumes and she wore the one all day. She named herself "Baby Uni". She deceided it was a unicorn costume because of the wings so I couldn't call her by her name all day I had to call her baby Uni. When I made her take it off she said she changed back to Allie Green and she wasn't Uni anymore. She's getting really bossy lately , like that four year old stage. She likes to tell us where we need to stay and what we need to do. And she loves to repeat anything she hears either on TV or something someone says. She doesn't miss a trick , it will seem like she's playing and not paying any attention to what your saying then she'll repeat everything you said. Not that either one of us said this to her , not sure where she got it, but the other night Tom was making her dinner. She told him "I'll try it, but if I don't like it I'm not going to eat it. If I don't like it I'll give it to Cody because he's stupid and he'll eat anything" . I think maybe she needs better monitoring of her TV viewing.

July 4, 2007

Happy 4th of July!!
Tomorrow is a big milestone for Alison. She is starting school. She's going to go to the summer program for five weeks so that she gets to socialize with some kids. She's desperate for kids to play with. I had her at the cemetary with me the other day and she saw some kids. She went running after them to say "Hi" and asked them if they wanted to come to the swings to play with her. They were about 8 and 9. After their parents were making them leave she was running away from me to go with them. Once I got her she was crying hysterical because they had to go to the swings with her. She loves to swing. She went to cousin Toni's first birthday party back in June and spent the entire day on the four person swing with different little girls. Most of her time was spent with Lily, she really likes Lily and has been talking about how she has to go back to the swing with Lil ever since. When we went to Long Island last week we stopped at a park so she could have some fun and all's she wanted to do was ride the swing. She just loves them.
We took her binki away May 13th.She has some trouble sleeping in the beginning and wasn't crying or anything but would not be able to fall asleep. She wouldn't take a nap and would stay up talking to her animals til 5 am every night.She's doing much better with that, thank God! I felt so bad for her, I told her she had to give it up and she said "I can't have binki anymore" and was really sad. It was pathetic.When she was going to bed at night I always gave her a doll or something to take to bed. One night while trying to comfort herself we heard her say "I want binki,...... Oh dolly you're not gonna cut it". I felt so bad for her but I couldn't help but laugh.But she got thru it, even though there were some rough nights when I wanted to give in. Binki is now a thing of the past.

She's quite the coniver now. She tore apart all her boxes of shoes and her tackle box of barretts and stuff in her closet one night while I was at work. When I asked her about it on the phone she was totally ignoring me and just kept saying "hi, hi Mommy" no matter what I said. It was pretty funny she was just pretending she couldn't hear anything I was asking her about ripping the closet apart , then she just said "well I gotta go" and left the phone.
One day her teacher, Maureen,was trying to get her to tread some macaroni onto a string to make a necklace. She did about two and tried to walk away Maureen kept trying to coax her back. She turned to her and said "oh come on Doreen, you get the idea"............... How about what she had to say one night. She told Tom that she "needed to learn the computer" , he asked her why and she said "I have to go to w w w hollyhobbie dot com" . He called me at work he thought I taught her that , I didn't ! I think she just got it from her DVD. I know there are Holly Hobbie dolls advertised and it shows the web address but I don't remember it saying it, but it must. That's why she wants to go to the "holly hobbie store". We just don't know how she knew the www went with the computer.
She talks to all sorts of inanimate objects . When we leave to go somewhere we have to say good by to the TV the toys , ect. We even have to stop at the window outside sometimes and say goodbye to the moths. The other night when it was really hot out she was explaining to her blankets why she wasn't going to use them. "It's Ok Dora blanket, it's ok Barney blanket, I'm just wearing pajamas tonight because it's hot" . Tonight when Tom told her he was going to make her dinner she said "ok , I'll try it but if I don't like I'm not going to eat it, If I don't like it I'm going to give it to Cody to eat because he's stupid and he'll eat anything"!
She went to her regular pediatrician about a week ago for her three year visit. She was in the 80th percentile for height and the 90th for weight! Nothing else really to report there. She wouldn't talk to him much and basically just kept telling him to stop everytime he tried to exam her. She would not open her mouth for him and we even tried to say that I was going to go shopping and if she didn't open she would have to stay there with him . She said "OK". She also told him when he asked, that she didn't know who had a best friend a monkey. When he asked if she liked Dora she told him "no I don't know her". There's only Dora everything at our house.
She missed all the fireworks tonight since I was working but she likes to watch them at the beginning of the Honeymooner's. She loves that show. I think because Ralph is always yelling. The louder he is the more she laughs. Her other new favorite is "StarFirst" (Starburst) . She "has to have them" all the time. She helped herself to the box of them the other day as you can see from the picture. She has no trouble opening those little candies when she wants them.
She's all excited about going to Ocean City this year. She wanted me to play with her today. I told her I couldn't because I had to go to work. She started crying , I told her I was going to go to work to make money to go to Ocean City. So then it was ok. But then she was insisting on going with me, when I said she couldn't that I was going to work she said "no your going to the money store to buy money for Ocean City". If only it was that easy!

Wednesday, May 2, 2007

Alison had her check up today with the ENT doctor. There isn't much to report , he basically said he felt guilty for making us come all the way down there when she looks so good. It's still open which we knew , he said he would give it six months to a year to see if it heals over. If not we would deceide at that time about a surgery. We were only in there a few minutes . We don't have to go back for six months if there aren't any problems.

After getting something to eat in the cafeteria we went to the town to check it out and take a little walk. Alison was a very good girl, we walked around for 45 minutes and went in a few stores. I let her get something in the dollar store and she picked out a castle with a little mermaid.She's been playing with it for hours. The mermaid barely fits thru the door of the castle but it's great for her little ponies. Come to think of it she can't sit on the chair it comes with either because of the shape of her body , but I guess that's all you can expect from the dollar store.

After that we drove home and stopped to see Grandma S. and Uncle Joe. Uncle Joe got a kick out of asking her "what did you win?" to which she likes to reply "nohting , now get out" . I'm not sure where she got that from or even what it means but she loves to be asked that question. Grandma showed her the back porch then she made Grandma take her out there about 12 times. I'm sure that will be her ritual now everytime she goes there.Poor Grandma, that will teach her for showing her it. She's working on addition and subtraction now. She actually gets it if you tell her 'if you have one and someone gives you two more how many do you have?' She walks around the house saying things like I had two ponies but mommy took one now what do I have.

After we left there we stopped at the hospital for the ice cream social. After seeing some of her usual friends there, in walked Kaitlyn and Connor. She has never met them but looks at their pictures all the time and wants to play with them. So she ran around for awhile with them and had fun.

She crashed when she got home even though she slept the whole way home from Danville. However once she had a little something to eat she got rejuvenated and now at 2:20 am is watching Holly Hobbie and running around not looking the least bit tired. Her mom on the other hand is not feeling the same way so I'm going to sign off and attempt to get her to go to sleep.

Tuesday, April 17, 2007

It's out!!!!! Alison had her trach taken out on monday ,April 16th around 2pm. Actually the doctor gave Tom and I the honors to take it out. I took it out and he suctioned. She did fantastic with it.She wasn't quite sure at first what was going on but as soon as the doctor and nurses left the room she was right back to playing and wanting something to eat , apples from McDonalds of course. Her oxygen saturation stayed in the high 90's the whole time and her breathing was quiet and unlabored even when she went to sleep later in the evening. She just has a little gauze pad and some tape over it. They said we could just put a big bandaid but I think that would be harder to get off to change everyday. Not to mention all the adhesive that would be stuck on her neck. We got two different opions as to when it would heal up. The pulmonologist seemed to think it would heal right up in 48 hours. The ENT doctor said that it could take weeks but some kids who have had it for years, as she did, don't ever close and have to have an operation to close it up later on. He said it was very common, the pulmonologist said it was rare so who knows? I guess we'll have to wait and see if it closes. We have to go back in two weeks.
By 5 pm her nurse let her get out of bed and said she could come off the monitors if we wanted to take her for a walk . So we did, we took her down to the caffeteria to get something she would eat.She wasn't into the cheeseburger, carrots and tomato soup they sent her. She was happy to get out of that crib and was dancing and singing all the way on her walk. On the next floor down there is a big mural like thing on the wall. She likes to stop there to see the kitty and the bunny and things so we went there. She was petting the kitty on the wall. I took her down there again before bed. Then around 4am she wanted to go back down.She was doing everything she could think of to avoid going to sleep. In between there she had a visit from a therapy dog named Shadow. She liked him. She told him to sit and he did , then to lie down so she thought that was great. She really did very well staying contained in that room and crib considering she isn't sick.
It was kind of weird when we got there, the nurse who had her, Marie, remembered her. She was an LPN student back a year and a half ago when Alison was in there with a respiratory infection. It was the only day her school ever sent them there for clinical. She said having never been there before and having a new instructor she was a nervous wreck . The hospital they were training at didn't have much in the way of pediatrics just tonsils and little stuff. Then the instuctor goes and gives her Alison and she knew I was a nurse, She said she was freaking out. Somehow they all know I 'm a nurse , it must be on her file , the resident came in and said to me "oh your an intensive care unit nurse?" . They always know. Anyway she said that she was a wreck and thought her instructor was a ditz , so she was scared to do the suctioning and trach care, then she came in and started talking to me and calmed down. I remember them, there were a few that day and she's right the instructor was a ditz, she had me teaching them all the stuff. They were the ones that were in giving Alison a bath and changing her sheets so I ran down to get a sandwich and when I came back there was linen eveywhere, they were all disheveled and Alison was in the middle of the crib with a big smile on her face. One of them looked at me and said "she gave us a really hard time"! Alison didn't give her a hard time this time though she liked her and gave her hugs and played with her. She was there from the time we got there around noon til 11pm. She said she wrote one of her school papers on Alison's case.
They pretty much just came in this morning and checked her out and said she could go home. They just want us to watch her oxygen saturation for another day or so and leave the bandage on for about a week. She still coughs up some mucus thru it so I'll probably leave it on til that stops. She was going thru Holly Hobbie withdrawal , good thing she got home. I think she has already watched it about six times. She's been running around playing since we got home , after I made her take a nap, since she only slept five hours last night. She starts to get beastly and that always means she needs sleep. That's really the only time she gets nasty, the rest of the time she's usually easy going. Speaking of sleep I better get her there now. She just ate a can and a half of peaches. She's been eating like crazy since she came home.

Tuesday, April 3, 2007

Well we are not sure if Alison will be able to have her trach out on the 16th. We still have hope, but sunday night she was breathing a little heavy , it didn't really clear up with suctioning. By morning it was still going on and she was very raspy and had extra secretions. Fortunately she has not developed a temperature so we think it's just a cold. She's eating and running around fine but is coughing and still has extra secretions. She does appear a little better tonight though. Hopefully she will clear up in a few days and still have ten or so good days before the procedure.
She went for an early Easter visit with Grampa and Grandma Green on monday and had a good time. She's been playing with her ponies and eating chocolate ever since.And today on Grandma Moran's birthday a package arrived from Aunt Joanie and Uncle Gene. So we have been watching "I'm a little Teapot" tape all night. The Easter Bunny said he would bring her some nice stuff if she went on the potty but so far she hasn't cooperated. She say's she's going too but it just never happens. She said to tell him she wanted "a Bunny Barbie and Dora and Diego stuff".

Friday, March 30, 2007

Well we received great new last night. Alison's doctor called and said he spoke with her ENT doctor and they both agreed she doesn't need to redo the pneumogram or the bronch. They think that she can just have the trach taken right out. They plan to do it on the 16th of April. She will be admitted to the pediatric ICU and they will take it out and just watch her overnight. He said they just place a bandaid over it and it will basically heal up on it's own and close in a couple of hours, no stitches or anything. She'll just have to leave the bandaid for a few days and that's it. We can't wait. I won't know what to do without carrying the suction machine everywhere. I'll always think I'm forgetting something!! She has had a good winter with just those two little sicknesses , but no fevers to speak of or infections. So we just have to try to keep her like that for two more weeks. I haven't told her about it yet because I'm afraid if I tell her it's coming out she'll take it out herself.
She has been doing waaaaaaaay too much imitating behavior. She loves the crayola commercial where the little girl is "painting" all over the wall and the mother comes in and catches her and tells her how beautiful it is. She repeats it word for word. What she doesn't understand is that it's on the special paper.So the other day she did her own design all over the living room wall. Luckily that was with washable crayons, however a few days ago she did another design with an ink pen! She likes to imitate all her TV shows too.She watches too much Dora and Diego. Tom is now Papi! He's not really happy about that but she keeps calling him that. She wanted a Max and Ruby DVD the other day instead of a Dora. I thought she would never watch it because she doesn't really care about it when it's on TV but she insists on watching it everynight over and over. She gets a kick out of Max the baby because he just shakes his head or says one word sentences. She always has to tell me "he said No" or whatever he is saying when he shakes his head. We went to get mother's day pictures the other day and she was a bit evil. It was a perfect appointment time for her 3:20, but for some reason she woke up two hours early that day and was ready for a nap by 3. After we got there we had to wait 40 minutes for our appointment and she was loosing it. She was whinning big time then some little baby started crying and she turned around and said "quite!". I was ready to kill her after all the noise she was making . I made her apoligize. I think it worked because the next time a baby started crying (there was a bunch of us waiting) she just said "oh the baby is crying". She wouldn't really smile for the pictures after all of that. I wanted one's by herself too , the lady gave her flowers and a sprinkling can and wanted her to water the flowers. Alison told her "no I can't there's no water". So she wouldn't do it. She just kept playing with the stuff and wouldn't look at the camera so there really isn't any good ones . The lady took one where she was looking and hugging a bunny , it would have been cute but her eyes were closed. Afterwards we went out into the mall to see the bunny but she wouldn't go near him. She would look at him but if he looked at her she wanted to leave. I didn't even bother trying to get a picture she was too afraid of him.
She started her home schooling on the 13th and does pretty good. After the first time the Speech therapist, Mrs. Jean came she drove us insane wanting to play this game Mrs. Jean played with her. We thought she was saying the Kissing game.She would knock on the door and you would say "who's there" she would say "allie" and when you said "come in" she would come in and give you a kiss.This only passified her for a short time then she started saying she wanted to play "the kissing game" again. She would cry and cry because we didn't know how to play. If you agreed to play she would say ok , but then I would tell her to tell me what to do and we would just sit there. For a week this went on. After that was when the other teacher, Mrs Meladye came who didn't know the "kissing game " either .She wouldn't do anything and cried about everything. She kept telling the teacher "bye". Then I think she started to feel bad because she was being so mean , she started to cry and said "I'll play with you next week" . So then she gave Mrs. Meladye a hug and said they were friends. The next time she came Alison did much better. Later we figured out that she was saying "Kitchen game". Mrs. Jean had played with a doll house with her and she really liked it . We still weren't sure what the "kitchen game" was but at least we were on the right track. Mrs. Meladye was going to tell Mrs. Jean to make sure she brings it back the next time she comes since Alison liked it so much. They were happy with her progress, they both said that they didn't really think she needed the speech therapy. That she used tenses and pronouns very well for her age. She made her first school project on wednesday with her Occupational therapist Mrs. Maureen. It's a butterfly with crumpled up tissue paper glued on for spots. She was very proud of it. She gets very emotional and everytime they leave she says to Tom or me, if I'm here "I'm so proud of you" and starts tearing up. She was really balling the day when she wouldn't do anything she kept repeating it. I guess she knew she didn't do good and was upset that we weren't proud of her.
We went to the lake for a walk today, her and Cody had fun . She didn't want to leave though she started crying because I wouldn't let her "go in the river" . Cody didn't take no for an answer and walked in anyway.
Well she's up now I better go, she wants her "cereal". That means Captain Crunch with Peanut Butter. Every other cereal is called by it's name but "cereal" is Captain Crunch , she loves it.

February 28, 2007

Well today is Allie's third birthday . I don't know where the time went. I can't believe she's no longer a baby. She's quite the character lately. I don't know where she even gets half of the stuff from. Last week when I asked her what she wanted to eat for dinner she told me "M&M's". She never ever had an M&M so I don't know where she got that from, TV probably. But for two days everytime you asked her what she wanted to eat it was M&M's. I actually let her have some and of course that made it worse. She loves chocolate now and always asks for it. Right now she is eating a lollipop. Another first. She was asking for something and I couldn't understand her so I had her look in the cupboard to show me what it was she wanted to eat. Well when she looked in she saw the lollipop's . So she picked them up and wanted to eat them. I don't know how she knew that word either because she never had one and I don't think ever really even saw one. But she wanted "lollipop" and she had a little fit for herself when I told her she had to eat some regular food first. So after two bowls of cereal I gave her a lifesaver pop. She looked at it and said "it's a doughnut" She always comes up with these associations that I don't even know how she knows this stuff. She's never eaten doughnuts either. When I showed her the picture from the day she was born she looked at me and said "Oh baby Allie doesn't feel well, she'll be ok". So I guess that's the final word on that . Everyday when I get dressed for work she tells me "your a doctor and a lady", sometimes she tells me she's a doctor too but usually she's a ballerina or a princess. She loves to dress up in her costumes and wear her crown. She got a new one from Grandma and Grandpa on saturday for her birthday so she put that on tonight and said "I have to find my princess dress, I need it". She always has to have something because she really needs it.A few weeks ago I was reading before bed and I was trying to get her to go to sleep. She looked at me and said "your wearing your eye glasses on your eyes" I guess she must have heard that on TV too because we never call them eyeglasses. Then she said to me "mommy , what are you reading about". I told her "a gardener". So last night when I picked up the same book she said "mommy's reading about flowers". Her memory is unbelievable. Last week I took out shoes that she only wore once before around Halloween. I went to put them on her and she said "I'm going to wear my Halloween shoes", I almost died. I didn't remember that til she said it. At first I didn't know what she was talking about then I remembered that the only time she ever wore them before was with a little brown skirt and Halloween shirt she wore to school one day.
I had her doing chores last week because she saw a new Dora video she "had to have". She was looking all over the house saying she had to find it after she saw it in a flier. When I told her we didn't have it, it was at the store she sat there thinking a bit then told me "Mommy, mommy I have an idea" (another one of her famous lines) .When I asked her what her idea was she said "we can go buy it". She's a coniver. So I told her if she picked up her toys at bedtime for three days I would buy it for her. When bedtime arrived that night she started running back and forth to the toy basket throwing the toys in. When I asked her what she was doing she told me she was picking up her toys. It never happened that fast before or since. But she does like her new video. She knows all the songs already and the spanish words. She's even counting backwards now.
She had her birthday party on saturday.She had a good time but still won't acknowledge that it's a "birthday party" it can be called a "pony party" or just a "party" but the word birthday can't be mentioned or the lower lip comes out and she cries or she'll just say "no mommy no" .She won't even go near the birthday cake , she just doesn't want anything to do with it. She didn't want to put the hat on at first but since cousin Richard put his on she did. She had a fun time visiting with everyone though.She slept about 12 hours that night.
About two weeks ago she started to get sick. It wasn't anything you could call the doctors and get an appointment for but she was just cranky and not herself. She wasn't eating much either. Everynight and sometimes in the evening too she would get beat red , hot cheeks. If you just touched her cheeks you would think that her temperature was 102 or so.But the rest of her body was normal temperature. She was having some extra secretions and was coughing for a few days. After a few days we just decided to give her the antibiotic we had left from last time to stop anything that was starting before it got a good hold on her and she spiked a temperature .If they don't have a temperture of at least 101.5 the pediatrician won't even see them . By that time she's usually pretty sick with an infection. So to be on the safe side we gave it to her. After about four days she was doing better and is fine now. We just don't want any infections so she can get this trach out in April or so. So far this winter she hasn't had anything major thank God. I'm going to call soon to arrange the bronch to get this out.
She just came over to me with one of her Barbie figurines and told me she's a mermaid (she's not) but she's obsessed with mermaids lately. I bought her a mermaid Barbie that she can take into the bathtub because I'm sick of drying the other's out. One night when I came home from work she ran over to the door to meet me with a soaking wet Barbie. There was water dripping all over. I asked her "why is this doll all wet" she looked at me straight faced and said "cause she's a mermaid". I said "where was she a mermaid at?" and she promptly pointed to the dog's bowl! So that became the swimming hole for days. One day she had two dolls in her hand and was heading for the bowl. Tom stopped her and said "don't put that doll in the water". So she stood there with the two of them and one said to the other "do you like to swim", The other said "yeah , I like to swim but Daddy says no" so the first one says "well I like to swim" and then she promplty jumped into the bowl . I guess Daddy didn't tell her not to swim just the other one. She did basically the same thing to me the other night when I was scrubbing the kitchen floor. She had a Barbie in one hand and a plastic Ronald McDonald figurine in the other. I saw her eyeing up my bucket. So I told her that "that doll is not to go in that water, it's dirty chemical water and your not to put the doll in there" so she looked right at me and flung Ronald McDonald in the water. I guess we have to be really specific with her because I didn't say Ronald couldn't go in.
Nothing else really going on she's done with the early intervention program now that she's turned three and will go onto the next program for the 3-5 year levels. They are going to come to the house until the trach is out but we haven't met them yet or talked about when . I'm sure we'll be hearing from them soon. Well that's all the Alisonisms I can think of for now. So we're off to bed.

January 21, 2007

Well once again it's been awhile since I updated and I've been told about it so I guess I better get it done.Let's see what happened since I left off...........On the 18th of December we wound up in the ER again. When I got home from work on monday night Alison had flushed cheeks and felt a little warm nothing major . I didn't actually take her temperature but she was only around 99-100. After I gave her some yorgurt she was sitting on my lap grabbing at her ear and slapping her cheek . When I asked her if it hurt she said yeah. I touched it but didn't really feel anything then.She was laying down though. About 1:30am (a half hour later or so) she came over to me when I reached out to touch her face the right side of her face was all swollen. Really bad in front of her ear and then down to her neck and up the back of her ear. Her ear didn't even look normal it was pushed out.I took her temperature and it was only 99. By 2 am I deceided I better head to the ER with her because it seemed to be getting bigger and her trach looked like it was pushed a little to the side from the swelling. I was afraid to let it go 6 or 7 hours til the office opened. When the doctor looked at her he wasn't really sure what it was, her ears looked good no infections there. He deceided to do an xray of her neck and chest and some blood work. The nurse came in to draw her blood with a guy she met there last time. He's very nice and she likes him. She also liked the doctor and was playing games with him. She wasn't acting sick at all . Actually she was dancing around the living room before we left and singing Christmas carols on the way down. It was just that her face and neck were swelling for some reason. About an hour and a half after having her blood drawn and xrays done the lab came in to draw blood. When I told them the nurse already drew it they told me that one tube was clotted so they had to stick her again.About a half hour after that the doctor came in and said her chest xray was negative but he had to wait for the rest of the blood work. That was at 4:30am we didn't see another soul til 20 to 7 in the morning when he came in and asked me if I felt comfortable taking her home on some Amoxicillan. It had gone down some and her neck wasn't getting any bigger so I didn't have a problem with that. I asked him what he thought it was from and he said he wasn't really sure it could be mastoiditis or it could be a sinus infection that was draining into that area. Her white blood cell count was elevated a little but not crazily high. He wanted her to take the antibiotic and see the pediatrician later in the day.We left there around 7:30. I couldn't wait to get out of there it was freezing in there I had put my coat over her (she slept from 4-7am or so) so I was sitting there by this drafty window for hours. By time we got home I had to stay up to call the pediatrician's office after 9. They wanted us to come in for 1:30. So we grabbed two hours of sleep and then got ready for that. He wasn't sure what it was either but said it definatley wasn't mastoiditis thank God because that can be very serious. I really didn't think it was anything crazy bad like that but after that ER doctor said that I was a little worried about it. It's an infection of the bone and can turn into menegitis and can be difficult to cure because it's a bone infection. Anyway he said her ears were good and there was nothing inside her mouth causing it. He wasn't sure if it was a sinus infection or he mentioned a cellulitus but I'm not really buying that because it's not red or hot at all. Anyway we mentioned a salivary problem (read on the internet about infected salivary ducts ) he said it could be that also. He doesn't think it's a salivary stone because he didn't feel any cyst like lumps in there. But it could be infected. The reason we thought this was because it really started to swell right after she ate. She wasn't eating as much as usual for a day or so and had been grabbing at the trach tie. It was probably bothering her for a few days. So basically we don't know but he said to keep her on the antibiotics for the ten days and if it got worse or didn't get better then they would do a CAT scan of her head and neck but he didn't want to put her thru it since the treatment is basically the same. She definately had less swelling by time we went to the doctors but her face was harder. Thinking back over the two days before or so she was a bit whinny and was sneezing more than usual. I guess it was starting then. We got some sleep when we got home and then she was running around the house. She's wasn't eating great and would cringe when she ate or drank but that all went away.The next day the front of her ear got better but the swelling behind her ear got worse then her lymph nodes there were all enlarged. It lasted about a week before all the swelling was totally gone and she wasn't rubbing it anymore. I guess we'll just never know what it was , maybe it was just some sort of virus or something. Other than that she's been doing well this winter. I don't want to speak too loud or jinx us but somehow so far we have avoided that bad bug that was going around.
Alison went Christmas shopping with Uncle Joe and Grandma S. she had fun.We stopped to eat afterwards. She's a great shopper. One day her and I went for 12 hours.As long as you feed her and let her have a nap she's fine. I actually took her about a week ago to the outlets and we didn't get there til 5:30 thinking they were open til 8.Well that was only their holiday hours and they closed at 6 now. So after about 20 minutes in Children's Place we had to leave cause they were closing. She started sobbing I didn't know what was wrong at first then I figured it out. I asked her what was wrong and she kept pointing to the store saying "shopping , shopping" . I've created a monster. I promised her we would drive to the mall since we didn't get anything accomplished there but she really didn't want to hear it just kept crying "go shopping". We went to the mall and she met this lady in Gymboree. The lady was talking to her and asked her what her name was she told her "Allie Green" the lady said something to her like "my name is Pat" . Alison looked at her and said "it's nice to meet you". I thought I was hearing things. I didn't think she could have possibly said that but the lady started laughing and said "it's very nice to meet you too" so I knew I wasn't hearing things. She's such a character anymore.
Christmas was interesting. On Christmas Eve Grandma , Uncle Joe and Uncle Pat came over for dinner. Grandma helped her open some presents and we all had a good time. She got very busy playing with all her new toys and got a kick out of sitting at the table in the "big chair". Christmas day I had to work so I got up early so she could open her presents from Santa before I went to work. You couldn't mention Santa was coming . She liked him on TV or in books but she didn't want him coming to her house. Whenever someone would ask her if Santa was coming she would say no and put her head down and the bottom lip would come out.So Christmas morning we wake her up and tell her that Santa came, she say's "no" then we said he left you presents so she got up. She came down the hall and looked at the tree then she took an envelope first and was playing with that. Then she took the stuff out of her stocking.I had to encourage her to open that stuff up.Then after some more encouragement she opened TWO presents and that was it . She went off and played with them and her old toys. She wouldn't open any more.Later in the night she opened a few more, when I came home from work I kept on her to open some more and she actually got to the Baby Alive and the dancing penguin so then she was really happy. She loved those two. She did a few more the next day and the day after that ect. It took her a week to open her presents and I actuall opened the last one when I put the tree away because I couldn't stand it anymore. She let it sit there for two weeks. She's like Gramma Moran , it used to drive me nuts when I was little how she could let presents sit there all week not knowing what was in them!!! On the 29th we went to Grandma and Grampa's house for our Christmas celebration. She got waaaaayy too many presents there. One being the Dora doll with the wand in the picture. Just about everynight when she is suppose to be sleeping I hear Dora and her wand going off. She reaches out of the crib and into her toys and pushes Dora's buttons. She has a Dora Christmas CD she really likes and even now when we get in the car I have to put on "Dora Music".She sings all the songs now to go with her dancing. She knows some Christmas carols .Frosty is her favorite. Sometimes she'll just break out into one of the songs from her shows on Noggin. Usually Wonder pets.And of course we can't forget the theme from MASH which Dad made up a song about 'Cody Cody Coco Bean' a long time ago but she sings it everytime she hears the show come on complete with high notes. I can't believe she's going to be three already ,the difference in her now is unbelieveable. She can (when she feels like it) talk in sentences and she'll sit and sing an entire song or repeat a portion of the
Dora video or something. When she plays she acts out little scenes. If I remember right she shouldn't be doing that til she's about four. But she'll have the Barbies having a conversation together and then one day they were
playing out a scene from Rescue Pets. I heard her over there saying "Don't worry we'll rescue you" and the one Barbie was up on top of a box and the other two were coming for her. She plays with her Barbie's everyday too
which usually they don't get into Barbie til they are four or five.But she loves them.It must be in the blood!!!
She had her evaluation for her new school program on the 9th. She did better than I thought she would since she had only 6 hours of sleep. She did some of the stuff but you know how she loves to look at books? Well the one lady kept trying to get her too look at this book to pick out different objects and she wanted nothing to do with it. She outright told her at one point "I'm not going to play that now"..... It was kind of weird there were three of them all trying to get her to do their stuff at once
basically . They were all trying to do their evaluations so one is trying to get her to string beads while another one is asking her to pick out pictures and the other lady is asking us questions about what she can and can't do.
I think if they tried one thing at a time they would have gotten more out of her. I didn't know what they wanted her to be doing half of the time so I don't know how she was suppose too. But she did good . The head lady was very impressed. She was saying that she was playing well above her level when we mentioned the barbie stuff. THey gave her cups to stack and she did it in seconds so she was impressed with that. Plus she put a little frog under a cup and mixed the cups up. Alison could find him everytime. They all have to write it up and then we have another meeting to determine what she needs. The occupational therapist was very nice she had her cutting with scissors. Lalite (her regular occupational therapist)mentioned that about four months ago but never did anything about it. This lady had her doing it in five minutes.She was counting for them too. Another thing that was pretty funny. The had this picture which was very busy with all these different objects. They showed her a card with a beach ball on it and wanted her to find it in the picture. I knew it would be a problem as soon as I saw the beach ball. For some reason she can pick out other balls but beach balls she never recognizes as balls . I don't know if it's because they have all the different color slices or what.Anyway she sat there looking at the picture .They kept telling her to find the ball. I could see her eyes scanning it. She looked up at them and said "I have no idea" handed them the picture and walked away.Now we just have to wait for them to get their evals all together then we will have another meeting to deceide what school program she should be in and what services (occupational therapy, speech therapy ect)she'll need. I don't know how she's going to get up for school though because she's in a really bad little rut right now where she won't sleep. She was up both saturday night and sunday night til 7:30am or so. I put her in bed saturday by 2 but she wouldn't sleep. Around 5 I heard a weird noise in there . When I went in to check I couldn't believe my eyes. I said "what are you doing?" . I was promplty told "I'm jump roping" and she was, in her crib at 5 am like it was perfectly normal to be doing. That got moved to the other toy basket. So then I heard more noise only to find her doll and her doll stoller in her crib. She pulled it up the side of the crib and into the bed with her. So saturday I wouldn't let her nap no matter how hard she tried or how mean she got. So I put her to bed at her regular time but she only slept for an hour and a half then was up and playing with her toys and throwing things out of her crib til 7 or 8 am. Finally I couldn't take it anymore. I told her I was going to sleep and that was it. So she looked at me and said "go to sleep?" . I said "yes". So I laid down and she looked over at me, laid down and went to sleep!!!!! Why I didn't think of that five hours earlier is beyond me. I guess that's it for now. It's 4 am and she's in there singing I think I'm in for another long night.....oh there's Dora singing now.Better go reinforce the fact that she's suppose to be sleeping.


PS. She likes to go with me on my genealogy jaunts to the cemetaries hince the pictures with the gravestones. She likes to check out all the letters and numbers on the stones.And she was very happy that "it's raining snow" the other day.

Monday, December 11, 2006

Well I guess it's been awhile since I updated, mostly because nothing has been going on except getting things ready for Christmas.

To update from last time, Alison had her voiding cystogram and it basically turned into a ridiculously long day.I was suppose to work. I told them I would be a little late ,4 at the earliest 6 at the latest. I got there at 8:15. Her test was scheduled for 1:30 they told us to be there to register around 1. First they didn't have the order they said .But the girl who scheduled it three days earlier told me who ordered the test so she had to have the order to know what doctor ordered it. Once that was straightened out we tried to register. Apparently she has two medical record numbers there. They had her under Allyson Warren at our old address. Then they had her right under another one. some of her lab test and records were under one and some under the other. That was still in the process of being worked out when they sent us forward for the test. They took us in for the test at 2. It was only suppose to take an hour. They put the catheter in and it was taking forever to fill her bladder because the catheter was so small . It took about an hour to run the bottle of dye in. She was strapped in this little plexy glass craddle thing that they would turn side to side. Once filled they took films and then they wanted her to pee. They failed to tell me that part. They told me that they would put the catheter in fill that bladder do x-rays then drain it and do more. They never said she had to pee on her own. She wasn't going, they kept putting more and more into her bladder. It was huge on the films and protruding from her abdomen. She wouldn't pee. They were afraid to add anymore so they left her get up and move around hoping she would pee . We even put a diaper on her hoping that would make her go , took her to the bathroom , I was tickling her , making her hop and nothing. The girl came in and offered her a drink of juice and she told her "no thank you".Finally after we were in there for three hours they told us to go get something to eat in the cafeteria and bring her back as soon as she peed.She danced around , ate and drank a juice and a milk and still nothing. We went back to the waiting room and waited . Then they came out and said the doctor wants to see you. She took another xray , the bladder was still huge. She basically gave up and said that instead of us sitting there the rest of the night she would just report the first part of the test and say the rest was inconclusive. They wanted to see when she pushed to pee if there was any reflux. But basically when she was crying on the craddle thing it was about the same presure and she didn't see any reflux then so she didn't think it was a problem.So after she decided to give up we left her sit up on the table to go home and she peed all over. So they shot a quick xray.It was perfect timing because they basically wanted the xray as soon as she peed and it was only seconds after. She didn't have any reflux at all even with that huge bladder so she's cleared of all that. We left there (Wilkes Barre) at 6pm. We only got as far as Pittston when the traffic stopped. We were stuck there for 1 and 1/2 hours! Apparently there was a truck fire ahead of us.

Other than that the only medical thing she has going on was she went for her Synergist and Flu shots last week. She had to get two in one leg and one in the other. The one with two (half of her synergist and her flu shot) got pretty red , swollen and hot. I think it was probably from the Flu shot she doesn't usually have a problem with the Synergist.It didn't seem to bother her though and went away in a few days. She does well with the shots , she just cries when they stick her then after she's fine. When she was done she told the nurse "thank you". Oh I forgot she also went to the pulmonologist since last update.He really didn't have much to say . He thought she was doing good and basically just said that both him and the ENT doctor agreed that her bronch results were borderine and they both felt they should take the safe way and leave the trach in for the winter. He said to come back in six months if she still has the trach, if it's out we just have to send him a picture now and then. She also went to Philly last month and saw the orthopedic doctor. Again nothing to report there. He just had her pick up a bunch of toys which she shared with some of the resident's only after I couldn't fit anymore in my hands. He just likes to see how she is usuing her thumb. He's very happy with her results and the one resident was very impressed with it.I just assumed when they did it that she would be able to use it like she does after all that's the purpose of the surgery, but apparently it doesn't always turn out this good in such a short period of time. Oh I also forgot to mention that when she went to Dr.Perez he always weighs and grafts her. She was almost 32 pounds and was 3 foot 2 inches. Her weight came out to between 60-65 percentile and her height is in the 75th percentile. Not bad for a kid they said wouldn't be able to eat enough and maintain a normal weight.

She had her meeting with the Early Intervention people and they told Tom that I just misunderstood them that it's not a big deal she doesn't have to go to school at all. That isn't what we want either we just don't want her to go for the six weeks or so til her trach is out. So the end result is she has to go for an evaluation so they can see where she is and what she should have and they will come to the house til she can go to school. The problem is the only time they can do it is this week, at 8:30 am. Now I know she's not going to do anything they want her to at that hour so this ought to be interesting. She's also counting in Spanish now.

A little tidbit,last month we had Direct TV installed. The guy was here setting it up when Alison woke up. She usually sits in her high chair and eats breakfast while watching her shows on Noggin. Well since he was working on it she couldn't. She kept sitting there yelling "TV, TV" . We kept telling her that she couldn't watch it because the man was fixing it. She wouldn't eat her breakfast and kept trying to get out of the highchair. Finally we let her out and she went right over to the TV in the living room and picked up the man's pliers and shoved them towards the TV and said "Fix TV". The guy was laughing. I think she's addicted. She thinks we can fix everything .The other day she tore a piece of toilet paper in half then shoved it at me and told me to "fix it".

We (Alison and I) went to see Happy Feet . She did pretty good with it. Although after awhile she wouldn't sit but she was just standing dancing and mauling the little girl in front of us. It wasn't entirely her fault the little girl kept reaching back for her hand.When we first went in she got scared and didn't want to walk up the ramp she kept telling me no and trying to run back out. Once I got her beyond that she was ok , and once the screen lit up she was enthralled. She still loves the penquins although I'm not sure why she calls them all Baby.

Today we went for Christmas pictures but that turned out about as good as our visit with Santa. For some reason she was fine in the waiting area , she was playing with some other kids but as soon as I had to take her in the photo room she wouldn't get down and kept crying and hiding her face in my shoulder.She was sobbing pitifully, I'm not sure what she though would happen. The lady wasn't very patient and then wanted to take the other people first so we went out and watched . Again she was fine in the waiting area but as soon as we came back in started crying. She wouldn't sit on the thing at all but would sit on my lap .So we scooted her down a little onto my leg and I just stretched out so I wouldn't be in it. Unfortunately the lady didn't bother to tell me that my arm was in it even though she could see it on her screen.So my arm is in every shot she took.She just did four really fast of the same pose.She really didn't make much effort. Once sitting like that Alison was ok and was smiling at her stuffed dog.Unfortunately as usual they always snap too soon and don't wait for her full smile. Then she changed and did a litte better although still sitting on me but at least the lady did a little different pose.But again she took four the same in that outfit. She didn't even bother to try to turn her alittle or anything. I guess I'll have to take some of my own at home. After that we went to see Santa , he was on break to feed the reindeer so we sat and had a pretzel and waited for him. She looked at his house and chair and all his stuff but when I said are you going to go see Santa and say hi I was given a flat "NO".You would think I would have learned by now and just moved on but no.We waited for him , when he got back she again told me no but at least was watching the other kids go and dancing around on the bench. After about a half hour I tried again "NO!". A little while later I got in line. She danced and counted her way all the way to Santa but as soon as she saw him the brakes came on and she would not go near him. She was wailing loudly and it was echoing thru the atrium of the mall. We tried to sit me on a chair next to him with her on my lap but no dice. The lady snapped the picture anyway so I have one picture of her wailing with Santa in the background..........Oh well maybe next time.But despite what her father thinks she is not traumatized by Santa. When I showed her the picture afterwards she was laughing and saying "Allie and Santa". She's a piece of work. The lady said to me "she's a tough one" and Santa said he remembered her from last year!!! Somehow I don't think that can be good.

Merry Christmas Everyone!

October 31,2006

Well the final decision for those who don't know is to keep her trach in for the winter. Her pulmonologist really doesn't want to take it out even though he said she aced her sleep study. He was really happy with the results and knows that she looks really good but he said the video of the bronch was borderline and since it was viral season he would leave it in. He came right out and said that if it was spring he would feel comfortable taking it out now but since it isn't,he recommends leaving it til spring.It's very disappointing but he is basically concerned that if she gets an infection and gets swollen it might be a concern. The problem is that she gets the infections because she has the trach so it's kind of a catch 22. That little snafu basically screws the whole plan up. She is suppose to start school in february but we really don't want to send her with the trach. She needs to have someone there who can put it back in if she or another kid pulls it out or has an issue with it. The problem is we went to a meeting at her school yesterday and they don't want the parents to stay with the kids since they act differently when the parents are present. They have two options.One is we could get a nurse to go to school with her everyday.A complete waste of money if you ask me. The second thing they told me was that every school has a nurse. I just about split my pants laughing at that response. I don't know a single school nurse who is capable of changing a trach out.Not to mention they would have to call her or go find her and wait for her to get to that classroom.As far as I'm concerned that is not an option.We couldn't even get her a nurse for home because they didn't have any trained nurses to staff this area so I really don't think that is as easy as they say either. Also the third problem is that she will be around all these kids so the chances of her getting an infection are greatly increased. If this happens they won't take her trach out for six more weeks .So it will keep getting delayed. It just doesn't seem worth it since she will only be in school about six weeks before her trach should be coming out. We are probably just going to keep her home for the six weeks.Once it's out she can go to school.They are coming on thursday to discuss it.Also now that she has to keep the trach in she has to get her Synergist shots every month to prevent RSV infections. That means two shots every month all winter for her besides any regular shots .

When she went to the school meeting it was a brunch for all the kids transitioning to school.We walked in and she went over to this little girl .It was actually a little girl she met last christmas at the St. Joseph's Christmas party. Leah's mother was right there and remembered Alison too. She said "Alison do you want to go play with Leah?" That was it, she just walked right away from us and went with Leah and her mother. She never bothered to look back or try to find us.She was over in the corner playing with the other kids . I guess she won't mind leaving for school then. Leah actually has a new sister too , Anna. Alison really liked her. They both are adopted from Russia. Leah was being a little shy but Anna is very outgoing and always smiling .Her and Alison were hugging constantly. There was only one other little girl and a little boy there. After brunch, which Alison wanted nothing to do with because she found a great doll house to play with , the kids went to the playroom with two child care technitions and we stayed in the class room for the information session. Good thing Tom and I both went because we couldn't let her just go to another part of the school by herself .So Tom went with her and I went to the meeting. She couldn't care less if he was there or not but he had to be there to suction her.She has a cold now so reguardless of the fact that the trach could come out he would still have had to go to suction her. Once inside she had fun playing.There was a slide and a bunch of toys. She went over to the big rug with numbers and letters and started counting . The teacher looked at Tom and said "she's counting!" he was just like "yeah I know". She was impressed.We were there til about one o'clock.

After we left there we stopped home briefly and got her costume on. She was suppose to be Dee Dee Doodlebop but for some reason wouldn't leave the wig on. So instead she had to be a cat .She left that hat on the whole time .I don't know what the difference was. Anyway she went to Grandma and Grampa Green's then after that came back to Carbondale and went to see Grandma S. and Uncle Joe who's now home from the nursing home and living with Grandma. After that she went to the hospital to visit then home. She had fun but was beat by time she got home around 10pm because she had woke up that morning at 7:30 because she was coughing so much then went back til 9 but had to get up for her school thing. Last night she slept for 10 hours straight. She wasn't coughing at all til she got up today so that was good she got some much needed rest. She's had a cold for the past week but other than lots of secretions, she doesn't have any problems with it. Her oxygen level is fine and she doesn't have any distress. As long as she doesn't get those bacterial trach infections she does fine with colds.

This week besides her school meeting she has to go have a voiding cystogram done on friday. I can't remember if I posted this before or not but when she had her ultrasound she had some reflux into the middle of the kidney. Sometimes this is normal for kids this age but because she only has the one kidney they want to make sure.So they are going to do this test. Basically they will put a catheter in and fill her bladder with a fluid, take some xrays then let it drain and take some more while it is draining to see if there is a narrowing or obstruction of any kind. Should only take about an hour but I'm sure she won't be happy with the catheter. Then next week she has to go to the pulmonologist and the following week the orthopedic. Hopefully after that she will be done for awhile other than her flu shot she has to get soon.That's not scheduled yet.

I forgot to mention she went to see The Doodlebop's the 22nd. She said she liked it but it was hard to tell because she just sat there mesmerized. She didn't move the whole show except when the lights first went down I think she got scared because she grabbed my arm. Once they came on she just sat there staring at them. She wouldn't dance or anything .When I asked if she wanted to she just said "no".When I asked if she was having fun it was just "yeah". She was very good though. Next we're going to try a movie. There's a penguin movie she's enthralled with now.They are her new favorite animal.She cracks up when she see's them on TV.And she does her best penguin walk. She sits pretty good when she's watching something so I think she'd make it thru a movie.

Tuesday, October 17, 2006 6:52 PM CDT

We're home but they didn't take her trach out. I don't think he ever had any intention of doing it like he said. He didn't even intend to do the sleep study til we asked him about it. It was never scheduled . Luckily they could do it so we got that done. Now he wants her pulmonologist to look at the video of the bronch. He said it's still moderately floppy. I don't think he gets it that it's going to be floppy til she's like 8. We don't really expect it not to be we just need to know if the airway is big enough to make a difference. Anyway now we have to wait for the pulmonologist to look at that. Then he tells us that he doesn't read the sleep studies so we have to wait til someone (the pulmonologist alos) reads that. So there's no way he could have done the sleep study overnight and then taken the trach out in the morning . So in a day or so we should hear from the pulmonologist about the studies. They will talk and deceide. He didn't sound convinced to take it out. But he did admit that she looked really good and that it was a very good sign that we could cap her all day and she did good with it. Last time we were at the pulmonologist's he also thought she would be able to get it out so hopefully he'll have good things to say. We had to wait four hours for her to even get in . Something happened with someone else in the OR and backed everyone up for hours. We got there at 11:15am and she didn't even get into a room to get ready til 3pm. She went for her scope at 4pm. There were only so many books she would read in the waiting room.We did alot of stoller rides in the hall but of course they don't tell you it's going to be four hours so you can just go and come back instead we had to hang around this waiting room without her being able to eat or drink for four hours.She didn't eat from midnight til 6pm the poor thing. We certainly weren't going to eat in front of her so we didn't eat either.She had a very nice anesthesiologist once inside and she was very charming to him. They gave her a Dora movie so she was happy with that.She let them do everything without any problems.She was just dancing to the Dora music. It only took about an hour and she woke up pretty cranky from the anesthesia. She basically didn't like the oxygen mask blowing at her trach and face and as always she had something against the pulse ox machine. I don't know why she dislikes that so much but it's like her arch enemy even though it's the easiest thing she goes thru nothing but a sticky probe on her toe.We got to go into recovery room as soon as she came out of the surgery. They didn't have to excise any granuloma's which would have extended the surgery and hour or two and prevented any chance of her getting it out for awhile til it healed. Luckily she didn't have one when they got in there.We didn't really think that she did since she was capped all day without a problem but you don't know til they look.After she got to her room she went back to sleep so they deceided to start her sleep study since she was already sleeping. She woke up after two hours and had some juice and jello. After that a therapy dog named Zoe came along (she missed a doberman while she was sleeping) she was petting her and pulling the unicorn horn on her halloween costume. Zoe was kissing her.She was still kind of zoned though from the anesthetic. She went back to sleep around midnight and slept thru til 6am except for when she kept talking in her sleep and I kept getting up to see what she wanted and she was sound asleep. I couldn't see all the stuff that the sleep study measured but what I saw was good. Her oxygen level stayed around 93-96% . He ordered the cap to come off if she went below 85%. She never came anywhere near that. Her heart rate and respiratory rate stayed good all night. She slept thru without any problems. So we'll see. It wasn't as bad as I thought . No one was in the room. They have small nurses stations outside the pods of 4 rooms so they were just out there. She was on the regular heart ,blood pressure and oxygen monitors , then for the test they had two straps one around her chest, one around her stomach with leads for monitoring , and an oxygen sensor. Then she had a thing that looked like a mustache .It went under her nose with two prongs that went into her nares to measure the flow of air thru her nose. It was taped to her cheeks. Now she has big red marks on her cheeks from the tape. They did put skin protector on but you know our skin.It's a big red square on one side. Anyway she was really good she only accidently disconnected one wire when she turned over at night one time.The rest of the time she left them alone. At first she was touching the nose thing, the only thing that was bothering her but then after an hour or so she didn't bother with it. I don't know why, it would have driven me nuts to have two prongs in my nose.She also had an IV. I say that if she was able to pass this test after just having anesthesia (they put it on her two hours after having the anesthesia) while she was still groggy, plus having that scope with the tube down her throat makes her inflammed and a sore throat, that she is fine. It's like them doing the test while she was sick, if she can pass it then she's fine. I guess we just have to wait and see if she did pass it but all the obvious things they were monitoring were good all night. The nurse taking care of her even said that she did "REALLY well". The other one came in to take it off in the morning and asked if we had to uncap her at all when I told her no she said "oh great". Now we just have to wait and see what they concur on.

October 12, 2006

I know I haven't updated in a long time but things have been busy and I'm just plain tired. We had a nice vacation, the weather was great 75-77 everyday.Alison and Cody both loved the beach. Although I think Cody realized he's not as young as he used to be and he seemed to know his limitations as far as going out deep to swim went. Everyone, including the cats, was very well behaved this trip even in the car.We added three new crabs to the household but unfortunately Moorelyn has already passed away. Pennlyn and Haven are doing well as is her old friend Mac. Mac is acctually the most active. He seemed to like the vacation too. I picked some stones on the beach for his aquarium and he has been playing on them ever since. Alison didn't seem to remember the taffy guy she liked so much last year but she definetly liked the boardwalk. If you stopped in a store you got a whine and she would point to the boardwalk for you to get back out there. She learned to like French Fries while there. She was never a fan before but something about boardwalk fries turned her. The rest of the vacation she just ate spagetti every night.Except one night of Chinnese food. It was a good trip but I would have liked to expand it about a month!
On the home front, Uncle Joe had a trial home from the nursing home and he did very well. Was able to get all around the house and help himself in the kitchen. Hopefully he will be home for good soon. Uncle Pat was also having trouble and came home from the hospital today after having a pacemaker inserted. He's doing good with that. As for Alison's medical stuff she had her kidney ultrasound as soon as we got back from vacation and of course nothing can be simple. Just when we though we were almost done with all her stuff she has more test to do. The ultrasound showed some mild hydronephrosis toward the mddle of her kidney. They said this can be perfectly normal in a two year old or could be a sign of reflux . That the bladder isn't emptying properly and then backing up to the kidney. Hopefully this isn't the case. No one has ever noticed her bladder being full all the time or anything so it's probably nothing,but just to be sure they want to do a voiding cystogram. Basically they will fill her bladder with fluid , do some xrays, then drain it and take somemore xrays to make sure it drains ok. Since she has all the bronch and trach stuff going on this month they are going to wait til november to do it.We also had a trip to Philly the week we came back to see the Neurosurgeon. We actually saw the nurse practicioner. She was happy with how she was doing. We told her about her being less clumbsy and running better and she said that they frequently hear that after this kind of surgery. We don't have to go back for a year as long as eveything stays the same.Next up is her bronch on monday.
She has to start school in Feb. after her birthday. They won't come to the house for her therapy anymore.She will be going to school four days a week for four hours a day. Not sure exactly how it works but we have to go to a transition brunch later this month to find out. They are willing to bus her but I can't see putting her on a bus at 3 so I'm sure we'll just be driving her.Aunt Kelly gave her a Ronald McDonald backpack and she likes to put it on and say she's going to school. She walks around with it pretending she's walking to school. She also got a Dora lunch box while we were on the boardwalk for school. She's doing really well with her speech therapy and can put two to three word sentences together now. She can also sing a few songs. She was singing the Moon,Moon Moon song from Laurie Berkner for Grandma S. the other day then somehow she just went right on into a rendition of the ABC song. She sometimes doesn't take her time with it and she can sing the whole alphabet in a few seconds . I think she took up speed reading .It's like she's too busy but just does it to appease us.Her speech therapist is very happy with her progress. She can even say words with alot of syllables such as Watermelon which she says pretty clearly. As for her occupational therapist he wants her to start building up her strenght in her hands. He always has her stringing beads to get some fine motor control and she can now pick up the string and tread beads on it and pull them thru to the end. He wants her to start working on zippers and buttons. She can say most of the words to her shows before the characters do. She'll start doing the dances or saying yes and no to the questions before they even ask them. I think she may be watching too much TV!
Last weekend Uncle Tom from Kansas came to NJ. We took Grandma S. and went down to Aunt Joanie's to see him. She had a great time. Too bad the kids didn't come with him she would have loved that.She was so tired she was like a drunk falling all over. So I doubt there are too many good pictures she wasn't the most cooperative with that.We had some computer problems last week and had to reinstall everything so we are still working on that some.So anyone reading this send me your email address because I lost them all in the computer remake.
I think that is about all that is new . I'll try to update as soon as I can after her bronch this week.Hopefully when we return home she won't have a trach in.

September 15, 2006

Things are going well here. Alison has been running around like a crazy girl. We are not sure if it's from the surgery or just the fact that she's a few weeks older but she definately has better balance and is running much faster than she did before the surgery.I find it a little hard to believe that three weeks could make such a difference in her. It makes more sense that it had something to do with the surgery. She probably had some weakness or some numbness or something in her legs before. Her incision healed up really nicely too. Next step is her bronch in the middle of october as long as we can keep her healthy til then. As a gift for getting her trach out, which hopefully she will, she is going to get to go and see the Doodlebops live.She walks around the house now saying "me Dee Dee". I just hope she's as thrilled when she gets there. She doesn't like alot of people together clapping. It's like the birthday thing. Speaking of which she knows how to sing the alphabet song now, she usually would just sing along and wouldn't do it on her own. The other night she just started singing it on her own. She did the whole thing to our surprise, when she got done we both clapped for her and said "yeah" and she burst into tears!! She's going to cousin Richard's fifth birthday party tomorrow.Tom's going to try to remove her before the birhtday song starts. If not it's at least 20 minutes of crying.I don't know why but she is petrified of that. She's looking forward to going to play with Richard but would not go to sleep tonight she kept dancing around the crib and shrieking. Last week she went to the Race for the Cure in Scranton with Aunt Kelly and myself. Despite getting up very early she had fun. She was very good considering she only had three hours of sleep the night before. She's been refusing to go to sleep and trying to climb out of her crib lately. When we finished the race she got a medal for participating. When the lady first gave it to her she didn't want it.Every since then she won't take it off. She even pitched a fit when I tried to take it off before she went to sleep. She's very proud of it and likes to show everyone her medal.Grandma S.,Aunt Joanie and Kelly came over after the race for dinner and she was quite the little show off.They brought her way too many presents and she's been playing with them ever since. Lately she's been mauling Rudy almost as much as she mauls Cody. I made the mistake of pretending the phone was for Cody the other day now she makes the two of them talk on the phone all the time. They don't seem to mind though they come over to her all the time. Tommy and Brad just get out of her way. In a few weeks we're going on vacation and then after we get back rumor has it Uncle Tom is coming to NJ for a conference. Another busy month!

August 25, 2006

Well Alison had her surgery and did well with it.
We went down to Philly on friday and she had to meet with the neurosurgeon to go over what they would do. After waiting almost an hour in a little exam room and three bags of Dora snacks later a resident came in and talked to us about the surgery. Nothing any really different than what the doctor told us the last time we saw him. From there she had to go to see anesthesia. She was very good in that office .She was playing with a bead thing the whole time we were there which had to be a good 45 minutes to go thru all her medical history and everytime she ever had anesthesia. After that we had to go to the lab. Unfortunately the girl stuck her twice and didn't get her so the other girl had to do the third stick and she was able to get the blood.Alison wasn't too happy by that time but once she was done she waved goodbye to all of them and told them thank you.

I worked the weekend then we went back down on monday. We couldn't get a time that the surgery was going to be til after 3pm on monday. When I called the lady said to be there at 5:45 I was hoping she meant pm but she didn't. We didn't get to Philly til a little after 6 because we weren't sure we had a room at the McDonald house til about 2pm. They have been really busy and were waiting for someone to leave. If we didn't have a room we weren't going to go down til am. Not knowing at that point that we had to be there by 5:45am. Anyway once we dropped Cody at Grandma S's we were on our way.We stopped at McDonald's on the way cause someone wanted "Apples". She got the cutest little toy with them. A baby Ronald McDonald with a knight suit. She loves him she call's him "baby McDonald". While in the hospital I got her another one there and it's a baby hamburgular. She calls him "Happy". I'm not sure why. But she played with them the whole time we were there. At the Ronald Mcdonald house she had a ball . They have a great new playroom. Actually two but one is for toddlers and she didn't want to come out of there. If I can ever get this site to work right I will try to post some of the pictures from there. Once in the room however she would not sleep. She was wild all night. I think she knew what was coming. I felt bad for the people next door because she just wouldn't stop talking very loudly or crying. They gave us a pack and play for her to sleep in and it's lower than her's at home. She wasn't in it two minutes and she climbed right over the side. Everytime I tried to ignore her and go to sleep she was right out of it and in our bed. She finally fell asleep around 3:30 we had to get up at 4:30 to get to the hospital on time. She wasn't a happy baby when I woke her. Luckily she was too tired to complain too loudly. Once at the hospital we had to wait in the waiting room over an hour luckily they had a bead thing too she played with that and a 16 year old girl sitting by it for a long time. After that we went to an exam room and she knew what was going on she hates getting her blood pressure and pulse ox taken. She's worse for that then for shots.Once in the preop area they gave her some versed then she was fine. She was waving hi to everyone. They took her to the OR and we had to go to the waiting room. They have a nurse that just circulates thru the OR and comes back and reports to the parents what's going on every hour or so. She came out and told us that they hadn't started yet but that Alison was in there charming everyone. She couldn't stop telling us how sweet she was being. She wouldn't have said that if she saw her the night before! While waiting there we saw Dr. Mattei. He did her original surgery the day she was born.We talked to him a few minutes and told him how well she is doing. Tom showed him her latest picture and he couldn't believe how good she looked. He said he would check on her. When the surgery was over and her doctor came to talk to us he told us that Dr. Mattei stopped in the OR to wish them well and check on Alison. That was so nice of him we would never have known if Dr. Sutton didn't mention it. Everything went well with her surgery . He said he cut the band of fat tissue holding the cord. He still couldn't tell one way or another if it was truely tethered but at least it was over and we don't have to worry about her having issues from that. He said that she would have to stay about 3 days. When we went there on friday the anesthesiologist said that they would be putting her in ICU for the first night. They also had told us that they would be putting leads on her legs to be able to see what nerve went to what so they didn't actually cut anything they shouldn't of. Well I didn't really think much of that when he said leads but it was the ones with needles . She had 20 needles stuck in her legs while she was in the OR. Once back we were able to see her about 20 minutes later. She was sleeping still. They only gave her a little gas for anesthesia then once she was asleep and they put her IV in they changed to IV anesthesia because it has less neuro symptoms so they could watch. They originally told us that she would have to have an Arterial line and a few IV's but when we talked to anesthesia that day he said he wasn't going to put an Arterial line in because he didn't think it was necessary and only one IV. He was very nice and knowledgeable. He obviously took the time to read her chart before coming to talk to us. He knew all of her history and we didn't have to go thru all that again. In the PICU (pediatric intensive care unit) she was hooked to all the monitors and everything was doing well. Her oxygen level was 100%. Once there they informed us that she had to stay on her back for 48 hours!!!! I didn't know how in the world we were going to be able to do that. They told us that most kids will just stay flat because it's more comfortable. One nurse even said that they have excrucinating pain when they move so they stay still.It was all a bit more than we were led to believe pre operatively.The doctor in Hershey had just told us that it was an overnight stay and they usually go right back to running around the next day. Now this one is telling us she has to lay flat for 2 days and they are talking about excruciatin pain. And she has to be in PICU. Anyway, she was really mad a few hours after she woke up and was trying to get up and get off of her back. They had given her tylenol earlier but that didn't help. So while she was really upset and trying to move all over they switched nurses. Her new nurse called and got her some morphine. Mostly she was just upset about being stuck on her back and WAY overtired from not sleeping the night before. So she thought if she could sleep she would be better.She also told us that she doesn't have to stay on her back like the first nurse said she just had to stay flat in the bed. She could roll from side to side though and probably would feel better than laying on her back on the incision. After the morphine we both went to sleep for about three hours. Dad went to the McDonald house for some sleep too. Her nurse was very good to us and just let us sleep instead of bugging her every few minutes. The only problem she had the first night was that she wasn't passing any urine. She didn't go from 10 am til around 9pm .They weren't sure if it was from the medicine or what. They were considering catheterizing her if she didn't go soon. Then once she woke up fully from her long nap she went and hasn't had any problems since. She was willing to eat some snacks after surgery and was doing well with that. Mostly just cereal or fruit snacks but at least she was eating. WE got to sleep pretty good that night at least 4-5 hours with only a few interuptions. More than I usually get in the hospital much less in ICU. The next morning around 6 the neuro surgery resident came in and said that everything looked good .She wasn't showing any signs of a spinal fluid leak which is something to look for . I forget the percentage he told us but it's not that unusual. He said to keep her flat one more day then she would get up on the third day and would be able to go home if she did ok with that. The second day she was very sweet. She even helped the doctors listen to her. She would take their stetescope and place it on her chest for them. She really liked her resident Dr. Kay.She would wave to her when she saw her pass the room. I couldn't believe it but she just stayed on her back like they said she might. She didn't seem to have much pain except when you moved her from side to side . She would cry while you were doing it but as soon as you were done she was happy again. She played with "Baby McDonald and Happy" most of the day. Towards the end of the day she was getting a little restless trying to get up on her knees and stuff so I asked them to give her some tylenol thinking maybe she was uncomfortable. She took a few naps during the day so she didn't want to sleep that night. I thought she was asleep at 2 so I went to sleep but apparently according to her nurse she didn't really go til around 5. Alex (the nurse) said that everytime she came in to check something she would start waving to her. We were both asleep when neuro surgery came in the next day but apparently they told Alex that we could go home after she sat up and was ok. She kept sleeping since she only went at 5am . Finally around 9 I tried to get her up and going, she wanted nothing to do with it. The neurosurgery resident came back in and updated me. He said she could go home that the incision looked great and her signs and blood work were all good. Really no restrictions as far as activity goes just to keep it dry and clean for five day. He also said that she could still get a leak to watch for it for the next week or so. They use durabond on it which is like crazy glue basically . No stitches. When I asked her if she wanted to sit up she told me no. I kept telling her she needed to sit up so she could go home but she kept telling me no. I guess she knew it was going to hurt. Finally we just had to make her sit up.Once up she was ok. She sat and watched The Backyardian's and Doddlebops. We left there about 12:30. I made her walk before we left just to make sure everything was ok before we left. She was cautious but did ok with it. She wouldn't let me carry her then and insisted on walking out of the unit across to the other tower and then across first floor to the elevator and thru the garage.Putting her in and out of the car seat hurts her but it is getting much better today. We took her back to the McDonald house to see Helen the social worker because she never got to meet her all the time we were there. From there we started home. We were all hungry so we stopped at the dinner in Allentown. She saw a bowl of Spagetti on the menu and was pointing to it. I didn't think she would eat it but she kept saying she wanted it. Of course she was wearing a white dress.She didn't finish it but she ate much more than I thought she would and she didn't get anything on the dress! Then we came home and got Cody at Grandma's. She was telling all her nurses what Cody says. She pants like him. Once home she was walking a little funny. I guess it's the most comfortable position for her but it was making me a little nervous at first .She had a really wide stance and wasn't putting full weight bearing on her feet.Sometimes on her tippy toes. THat is better tonight though. It doesn't stop her from dancing though she just leans on the coffee table and still wiggles her upper body around.

Now this week we have to call the ENT doctor about getting her trach out. They are looking to do the bronch in October and are just waiting for this surgery to be over and me to call them to schedule it.

August 16, 2006

Well things went well with Alison's hand surgery. She was a very good girl there and took her medicine right down before the surgery. They gave her alot of things there .Pre-op they let her pick a stuffed animal out . She picked a cute dog. When we were able to go in recovery to see her she had two stuffed Angels , a boy and a girl, in her crib they were about 15 inches tall each. Then she had a new crochet blanket and some bubbles. Her doctor came and took her to surgery around 8 . We were waiting in the hall around 9 and Dad heard her crying . A lady coming out of the OR asked if we needed help. We told her we were just waiting for our daughter and Tom told her that he thought he heard her crying. She said that she just left there and she didn't hear anyone crying. As soon as she got on the elevator we could hear Alison loud and clear.She can really whail when she wants too despite that trach. After what felt like forever they left us in and then she quieted right down. They only kept her in recovery room an hour and then let her come right home from there. She had a short arm cast on. She was running around the house as soon as she got home. I heard her grunting and getting mad.I went to see what was wrong and she was "cooking" at her kitchen .She had put something in the oven and the edge of her cast got stuck on the edge of her oven and she was pulling with all she had to get loose. By the next day the cast was starting to slide down her arm and I had to keep trying to put it back where it belonged. She had the surgery done on tuesday and by friday the cast had fallen right off. I saw her a few times trying to shove it back up her arm. She tried her best to keep it on but it just kept sliding off. Of course it was friday night and we couldn't get the doctor to see what we should do but we remembered him saying something on one of the pre op appointments not to worry about it if it came off. So I just splinted it with her splint from last years surgery for the weekend. Monday we got in touch and he said that the splint was fine for another day or so then just to wrap it with an ace wrap. So that's where we are now. By friday I'll just keep a little dressing on it. She has tried to pick at it from the minute she noticed the two little stitches sticking out. I was holding her left arm down trying to redress the right one the other day and she put her foot up and started rubbing her foot against it! She's like a little monkey when she want's something. We couldn't stay in the Ronald McDonald house cause they were filled so we stayed in a nice hotel in Center city , The Double Tree. She had a blast running around and playing there.I was surprised she went to bed so nicely and got up smiling the next day.Usually at that hour of the morning (we had to be at the hospital by 6:30am) she's miserable.

Friday it's back to Philly for her pre op work for her next surgery which will be next week. We went there about two weeks ago to see the neurosurgeon and he couldn't tell us one way or another if she needed the surgery. So basically we wound up with a yes, a no and a maybe by three surgeons. He said that it is a questionable call because she's borderline. He may not even be able to tell when he does the surgery if it was teethered or not. However the reson we opted to go with the surgery is that if she were to develop the symptoms they would be irreversable. So if her feet became paralized we would not be albe to do anything about it at that point.She could also get bowel and bladder problems to the point where she would have to catheterize herself for the rest of her life. We couldn't take that chance for her so we choose to have the surgery. It has risk the same as any surgery such as infection, bleeding or the doctor screwing up but we really don't have much of a choice. The chances of a complication are less than if we let her go and she has severe pain in her back and legs or something. So that will be next week. She will have to stay for 2 days or so. They say the recovery isn't a big deal and knowing her it won't be.

On the way to Philly to see this doctor she was sitting in the car and all of a sudden from the car seat we heard ....one,two, three , four ...all the way to twelve!! I told Tom the night before that she could count but he didn't believe me . Well he heard this loud and clear. She spent the rest of the day counting. She counts all sorts of things now that she sees but usually won't do it on command. She's doing pretty good with the alphabet too. She can say some of them on her own but if she's looking at them she can name them in order. She basically can say just about anything you ask her too and likes to repeat anything she hears anyone say either in person or on TV. She can say her name but does better with Allie than Alison. She can't quite say Schermerhorn yet so she calls my mother Grandma Shimmy.

Cody has had his fair share of mauling as you can see in the pictures. He eats it up though and never does anything to hurt her. He's really a good dog and very tolerant of her. She likes to hold his face and put her's up against his.Of course she likes to give him treats so that helps seal the deal for him.

We are working on the potty. She used to just shut the lid ,say no and laugh, but this past week she will at least sit on it as long as she can dance while she does it.

We went to the Wayne County fair about two weeks ago and she got to see alot of animals. She didn't want to ride the rides but kept staring at the merry go round.Finally after I talked her into it she agreed to go and she liked it while she was on but didn't want to go back on. I took her in the petting zoo which was just some little deer. After paying 9 dollars for both of us to go in and me to bring the camera she really didn't care about the deer at all. She just wanted to play with all the other kids. Her and one little boy were hugging. We must have been in there close to a half hour and she still didn't want to leave although Dad did since he was outside waiting for us.

After we get home from Philly it's time for cousin Antonia's christening. Can't wait to see everyone.

I will try to update after her spinal surgery if I can get upstairs to the computers.

July 24, 2006

Well we got some bad news from her MRI .When we called the doctor for her results they said they would give him the message. The next morning he called around 8:30am and asked for me . When Tom told him I was sleeping he told him to wake me because he had to talk to the two of us. Scared him to death for nothing. When we were both on the phone he basically said it was the same. But he wanted us to see the neurosurgeon anyway to check it out and make sure it wasn't a problem. He recommended a guy in Hershey Medical Center.I told him we had already seen a guy there (Geisenger) after her first MRI but he said he wasn't there anymore . So he recommended this guy in Hershey that was a pediatric neurosurgeon. He also said that her spinal cord ended at L3 but it's suppose to end at L2. When I looked into that on the internet everything basically said the same thing, that if needed to be investigated and that the spinal cord was probably tethered and needed to be released. So after much insurance nonsense we were seen by Dr. Dias the neurosurgeon at Hershey. He didn't have any doubts that her spinal cord was tethered and needed surgical release. He said it hadn't changed since the last MRI that she had at six months of age and that the surgery should have been done then . If left untreated she could get bowel and bladder problems and have to catheterize herself for the rest of her life, and/or numbness in her legs and paralysis of her feet.So needless to say it's something that needs to be taken care of. He said he didn't think she had any problems already from not having it done 2 years ago when it should have been done. He said her spinal cord is almost at L4 so it is definately stuck. What happens is that fatty tumor adheres to the spinal cord and then the cord can't grow like it should . The next problem was the insurance. Our insurance is Geisenger and they used to be together with Hershey but they split years ago and don't get along so they won't approve it. They said they would approve it for us to go to CHOP but not to Hershey. It's just a bunch of politics but it's not worth appealing and waiting on that nonsense. So we told them we would go and have it done at CHOP.But now we will have to go back for an evaluation by the new doctor before he deceides on the surgery I'm sure.THe guy in Hershey was going to squeeze it in in the next few weeks for us because he knew we had to get it done before her trach can come out.I don't know if this new guy will be so accomadating.We were told by Dr. Dias that it would only take about an hour. They would make an incision about three inches long and take a little piece of bone out to get at the spinal cord then cut the fatty tumor away and put it all back.He said the complications are the usual, infection, bleeding , paralysis , death , but we took a bigger chance getting in a car and driving there. They are all less than 1%. The recovery period of course is different for everyone but he said many parents tell him that as soon as the child gets home they just started playing as if nothing had happened. Other's are sore for a few days but nothing major.

The good news of the week is that they called us from Shrinners and said they could do Alison's hand surgery earlier. She was scheduled for Sept.19th but they moved her up to the second week in August. So at least that one will be out of the way soon. I'm not sure at this point if she has to stay overnight or not . One time they said just over night and the other time they said that she would go home the same day . I guess we won't really know til she has it done and we see how she does. The spine surgery will be an over night thing.

She went to the hospital the other day to see Uncle Joe and visit with everyone. She wore her new blue shoes in the picture. She was very proud of them , she stood there spinning in a circle for a minute or so when I put them on her just smiling at them. Once at the hospital she had to show them to everyone. She walked really good in them despite the heels and was even able to dance in them, which she did in the hall by the ER for everyone.

She's really taking off on the speech thing now. Well at least words Tom and I can understand ..........can't guarentee anyone else would know what she was saying.She can say all the animals names and their many nicknames, count to ten (just saying the words after you not actually counting),she said her name a few times but then refused so we have to work on that. Last night she was able to say "Love you" pretty clearly without her cap on.

Wednesday, July 12, 2006

Alison has been doing good. Sunday she went to Grampa and Gramma G's for Grampa's birthday party. She still hates the Happy Birthday song, but other than that she had a good time playing with cousin Richard and visiting.She didn't want to leave.Monday she went visiting at the hospital and then to see Gramma S. and Uncle Joe. We went to check on Uncle Joe since he came home from the hospital over the weekend. He was doing Ok then but unfortunately he wound up back in the hospital tonight. We'll have to say some prayers for him to get better soon. Yesterday Alison went for her MRI. She did really well.She weighed in at 30lbs and 36 inches tall. They gave her some Versed for sedation so she was kind of stoned just watching some cartoons. Then they changed her trach to an endotube for the procedure (because of the metal in it) and gave her some gas for anesthesia. Then they gave her an IV and did the procedure. She woke up crying from the anesthesia but then fell back to sleep for about an hour. At that point we woke her so she could get out of there. When she woke up her nurse came over and asked her if she wanted to go home , she gave him a definate "YEAH". She got dressed and waved goodbye to everyone.She insisted on walking even though she was still groggy. She kept tripping over her feet but cried to get down everytime I tried to carry her. We went to the cafeteria and she had some Cheerio's and juice. She liked the ballons there so I got her a big Blue's Clues balloon and she was as happy as can be. We don't have any results yet but we don't expect anything bad , it was just to recheck the tumor in her spine just to make sure it didn't change any. Next we have to try to reschedule her surgery then her bronch. The lady was on vacation and came back yesterday so we should be hearing soon as to a date for the surgery. As for her speaking she's taking off there. Her speech therapist has been off for the last two weeks and since she left Alison has learned ten new words that I can think of to put on her list. She just about tries every word you ask her too now. Some are better than others but I think her teacher will be impressed with how much she's done in the past two weeks. Most of them are from Dora. She knows all the stories and dances and does them , including some fake laughter, before the show even gets to that part. Aunt Kelly will be happy to know she even knows some spanish words.

June 26, 2006

Well we have alot of changes going on this week. Alison got sick on last tuesday. She had a respiratory infection and was having alot of secretions. By time I got home from work tuesday night she had a fever of 102.4 and as usual with that her oxygen level dropped down to 83%. So since it was midnight I didn't think she would be ok til morning with that oxygen level so I took her to the ER so she could get an antibiotic. They did a sputum culture there and a chest xray . The motrin I gave her before she left had started taking her temperature down, so by time we drove the hour to the hospital she was up to 89-90% oxygen level and her temp was down to 100. She had a very nice doctor and she was waving to him and saying hi when he came in. She was a very good girl while we were there and had a few nurses stop by just to say hi and talk with her. The doctor thought he saw a spot of pneumonia on her chest xray but wasn't quite sure at first cause it was right where her trach is on the xray film. He got her old chest xrays that were taken there when she was in the hospital there in the past and did feel it was a pneumonia. He then called her doctor to see if he wanted to admit her to the hospital or send her home. Dr. Zero said if I felt comfortable taking her home and just bringing her to the office in the morning I could do that otherwise he would admit her. Of course I choose to take her home. So they gave her an antibiotic and were sending her home . They deceided to take another temperature before she left. They took it in her ear and said that it was down to 99. I knew this couldn't be true becuase she had red cheeks and felt VERY warm. The nurse agreed that she felt much warmer than that and asked if I would mind if they took a rectal temp. I would prefer it because the typanic never works right on her. So anyway she took the temperature and it was 103.7! So that was the end of us leaving, the ER doctor didn't feel comfortable letting us leave with her temp so high so they gave her some tylenol and asked if we would stay a little while til her temperature came down. We were able to leave about an hour later when it came down to 102.6. We got home around 7:15 am. I had to call the doctors office around 8 to see when they wanted her to come in . So I just stayed up to call. I was hoping they would say around 3 so I could get some sleep but when I called they wanted her by 10:45 which meant I had to get up at 9 and it was already almost 8:30am. So I just stayed up and we went to see the doctor. She only had two hours of sleep besides the hour she slept at the ER so she wasn't very happy. When we saw Dr. Suto there she didn't feel she had a pneumonia by listening to her lungs . She thought he might be looking at a shadow from her trach or something on the xray and she said if there was anything major on the xray when the radiologist read it she would call me . I haven't heard from her so I guess it's negative. She left her on the antibiotic the ER doctor gave her but only for five days. She said if she developed a temp we couldn't get down to call but otherwise just keep her on the antibiotic and give her her breathing treatments every three hours. Since then both Tom and then I developed bad colds. I think that is all she has it's just enough to whalp her. She hasn't had a temp since wednesday other than a low grade one but she is coughing alot and still needs alot of suctioning.Today I called to see if they had the culture back to see if it grew anything . They said it was growning psuedomonis again and some other gram negative rod they haven't been able to identify yet. I'm not sure if this is new though. People with trach's frequently get what's called colonizations of organisms and they are there but don't cause any problems. This may be what they are seeing because psuedomonis usually smells and her secretions don't smell like it. And also it's just too coincidental that we both developed colds within the next two days of her getting sick.Anyway they want her on the antibiotic for ten days total now and they are going to send the culture to her respiratory doctor and see what he says. The bad news is we had to cancel her MRI and hand surgery. They won't (nor would I want them to at this point)give her anesthesia with a respiratory infection. So since we can't do that we can't do the bronch and take the trach out since this has to be done first. I'm not sure when they will be able to reschedule.Last we talked to them the next opening wasn't until september. We're hoping it won't be that far away but I think it might be.

On a good note she was able to go to cousin Kim's graduation party on saturday and she had a great time there. She got to meet some relatives she has never met and to play with cousin Richard. She likes to follow him everywhere. She likes to go to Uncle George's to play on the trampoline. Cousin Chris was nice enough to take her on for about an hour. She kept saying no everytime we asked if she wanted to get off or go do something else.She was even trying to take a nap on it but wouldn't get off. She just wanted him to keep bouncing her. Other than that she hasn't been doing much of anything . So if we can just get her back to eating we'll be on the right track. She has had a very poor appetite since she got sick this time .IF she eats one bowl of cereal a day plus a few fruit snacks we're lucky.She'll be loosing those chubby cheeks if she isn't careful.

May 28, 2006

Well Alison has had a busy few weeks. She was a flower girl in Aunt Kelly and Uncle Joe's wedding last weekend and has had alot of appointments in the past week. She told me she had a good time at the wedding even though she was cranky most of the day. She woke up at 7:30am that day and by time the wedding started at 2:30 she was ready for a nap!

She has learned how to climb on the couch now that she is getting more hand strength. So now she is trying to climb on everything. She's also mastered some other physical traits so she spends her days running thru the house and walking on her tippy toes or dancing. She knows all the Barney and Noggin dances.

She went to the neurologist last week and everything was fine he wants her to have an MRI just to check on the tumor in her spine and make sure it's the same and not affecting anything. There's no rush on it but since they want it done before the trach comes out (because they have to give her anesthesia for it) she has to have it done in the next few weeks. On monday she went to the pulmonologist and he was very happy with how she looked. He had talked to the ENT doctor and is in agreement that the trach can probably come out. He also said that since we cap it and she doesn't have any problems with that she probably doesn't have much, if any of a granuloma (the thing that would hold up the trach coming out). So after much rescheduling the plan we've come up with is the MRI very soon, we don't have a date yet, then the hand surgery in June and the bronch with hopefully trach removal in July.

She also will start speech therapy on tuesday. She met her new teacher on friday and was hugging her within ten minutes so I think she likes her. She played puzzles with her and colored. She will be coming once a week to start with and we'll see how she does from there. We figured we would get her started instead of waiting for July when the trach comes out. When she is capped it's the same as if it was out so she has the same speaking ability. The teacher seems to think that once it comes out and she starts talking she will be putting sentences together in no time. She did good with her when she was here imatating everything the lady did.

May 4, 2006

Well it appears to be that the Levaquin Alison was put on did the trick.She doesn't have any symptoms of the infection and has been off antibiotics for awhile. She's been running all over the place getting into trouble so she must be feeling ok. She had a long fun day on Easter. After finding her stuff from the Easter Bunny she went to church with Grandma S. and us . She was pretty good in church. After church we went to Grandma's for a little while then to Grandma and Granpa G.'s. Everyone was there and she had a good time playing with cousin Richard all day.We didn't get home til around 1:30am and then she thought she should be able to play with all her new puzzles and toys the Easter Bunny brought her.And she's been playing with them ever since. She loves any kind of puzzles and is even able to do some regular board ones I bought her.

Alison wants to wish cousin Charlie a Happy Birthday on the 9th. She can't wait to go to his birthday party on saturday to play with him and all the other kids.

She's going to start practicing for Aunt Kelly and Uncle Joe's wedding since it's only three weeks away!!!! Hopefully she won't throw anything into the lake or jump in herself!

She's in the process of getting a speech therapist to get her speaking more. Now that she can wear her cap it's the same as if she didn't have a trach so we want to get her started. They also sent me her papers to sign for pre-school next year. Don't know if we're ready for that!!

A few appointments coming up next week is the neurologist that we had to reschedule . Nothing really to do there just a check up. But then the day after Kelly's wedding she goes to the pulmonologist .We need to get clearance from him for her to have her hand surgery. Nothing else really going on . June will be our busy month.

April 13, 2006

Alison's appointment for the ENT doctor got cancelled last wednesday and they wound up rescheduling for the next day. She was starting to act sick again , just being clingy and whinny and not herself, so we wanted to get her there. We told him what has been going on all winter and he did a repeat culture. He said if she still had the same organism growing in the trach then he would recommend that she see an infectious disease doctor and have a PIC line inserted for IV antibiotics for four weeks. He didn't want to put her on anything until he got the culture back. With the weekend and him being in surgery on monday he wanted us to call him back on tuesday for the results. We both knew she wouldn't make it from thursday til tuesday without an antibiotic but he wanted to wait since she didn't look sick now. We knew it was coming just from her behavior. That night she got sicker was having some respiratory distress and wheezing. There was also an odor to it so I suspected it was psuedomonis ,a different organism than she has had all winter. Her symptoms were different this time. She had thick secretions and the distress. Her sats were down a little 93-94% . She usually runs around 98%. By late that night she had a temperature of 101. The next morning I called her respiratory doctor he wasn't in the office so they were going to have the covering doctor call me. I thought they would have to admit her for some IV antibiotics. I think if her own doctor was there he would have . I didn't hear from him til around noon. He thought she should go on a different antibiotic than she has been on . He wasn't sure the insurance would approve it so he had to find out and call me back. By 4:30 I hadn't heard from him and I called, they said they just got it approved and they would call it in. He put her on Levaquin, he said it would cover the strep pneumonia she used to have and the pseudomonis so either way it would be covered. She did better by the next day, although she wasn't fixed there was a definate improvement. When we called on tuesday the culture showed psuedomonis. So that's kind of a good thing because that means since it isn't the same organism she had all winter she wouldn't need the PIC line and IV antibiotics for four weeks. Hopefully this infection will be cleared up in two weeks when the antibiotic is finished. Her respiratory status is back to normal except for some secretions.She is much better except she doesn't seem to be able to fall asleep. She'll ask to go to sleep but it takes her a few HOURS to fall asleep. She has been staying up til 4 and 5 o'clock the last few nights. I'm hoping it's just a side effect from the medicine and things will go back to normal afterwards.It does say it could cause restlessness.

On a good note while we were at the ENT doctor's office he looked in her trach with the scope. He said her trach looks much better and he thinks that they could probably have it out by this summer. They can't do the bronch until she's over the infection so he said he would talk to her respiratory doctor and plan the bronch for June.Her respiratory doctor told us last time we were there that he thought she would be able to get it out this spring so I'm sure he will agree with him. Also he asked us if we ever tried to cap her trach. We didn't and didn't have a cap for it. So he said to try it. We got the cap and tried it and she just acted like everything was perfectly normal. She just went about her way playing with her puzzles and running around. The cap completely blocks her trach off so that she has to breathe thru her nose or mouth.She didn't have any trouble with it at all so that is a good sign. She wore it for about an hour and then we took it off just because she needs to break into it . She was trying to talk alot when it was on. When her occupational therapist was here on thursday he wanted Tom to try to let her take a drink with it on. She did that without any trouble so that's great.

She went to see the bunny in the beginning of April . She wasn't going to sit with him no matter what anyone said. She was running around his little display, laughing and waving at him but she wouldn't go over to him. She wouldn't even touch his hand.He grabbed her at one point and sat her on his lap but she started to cry. The girl snapped the picture anyway but she's not happy. After that we went to get our Mother's day pictures done. While waiting for them she saw the bunny at this mall. From upstairs she was waving at him. She said she wanted to go see him. So I gave her another try. Same story though she would just wave to him ,laugh and run away.He was a very nice patient bunny though, he was signing to her and everything but she wouldn't go near him. She even showed him how to hop! Oh well , maybe next year.

April 13, 2006

Alison's appointment for the ENT doctor got cancelled last wednesday and they wound up rescheduling for the next day. She was starting to act sick again , just being clingy and whinny and not herself, so we wanted to get her there. We told him what has been going on all winter and he did a repeat culture. He said if she still had the same organism growing in the trach then he would recommend that she see an infectious disease doctor and have a PIC line inserted for IV antibiotics for four weeks. He didn't want to put her on anything until he got the culture back. With the weekend and him being in surgery on monday he wanted us to call him back on tuesday for the results. We both knew she wouldn't make it from thursday til tuesday without an antibiotic but he wanted to wait since she didn't look sick now. We knew it was coming just from her behavior. That night she got sicker was having some respiratory distress and wheezing. There was also an odor to it so I suspected it was psuedomonis ,a different organism than she has had all winter. Her symptoms were different this time. She had thick secretions and the distress. Her sats were down a little 93-94% . She usually runs around 98%. By late that night she had a temperature of 101. The next morning I called her respiratory doctor he wasn't in the office so they were going to have the covering doctor call me. I thought they would have to admit her for some IV antibiotics. I think if her own doctor was there he would have . I didn't hear from him til around noon. He thought she should go on a different antibiotic than she has been on . He wasn't sure the insurance would approve it so he had to find out and call me back. By 4:30 I hadn't heard from him and I called, they said they just got it approved and they would call it in. He put her on Levaquin, he said it would cover the strep pneumonia she used to have and the pseudomonis so either way it would be covered. She did better by the next day, although she wasn't fixed there was a definate improvement. When we called on tuesday the culture showed psuedomonis. So that's kind of a good thing because that means since it isn't the same organism she had all winter she wouldn't need the PIC line and IV antibiotics for four weeks. Hopefully this infection will be cleared up in two weeks when the antibiotic is finished. Her respiratory status is back to normal except for some secretions.She is much better except she doesn't seem to be able to fall asleep. She'll ask to go to sleep but it takes her a few HOURS to fall asleep. She has been staying up til 4 and 5 o'clock the last few nights. I'm hoping it's just a side effect from the medicine and things will go back to normal afterwards.It does say it could cause restlessness.

On a good note while we were at the ENT doctor's office he looked in her trach with the scope. He said her trach looks much better and he thinks that they could probably have it out by this summer. They can't do the bronch until she's over the infection so he said he would talk to her respiratory doctor and plan the bronch for June.Her respiratory doctor told us last time we were there that he thought she would be able to get it out this spring so I'm sure he will agree with him. Also he asked us if we ever tried to cap her trach. We didn't and didn't have a cap for it. So he said to try it. We got the cap and tried it and she just acted like everything was perfectly normal. She just went about her way playing with her puzzles and running around. The cap completely blocks her trach off so that she has to breathe thru her nose or mouth.She didn't have any trouble with it at all so that is a good sign. She wore it for about an hour and then we took it off just because she needs to break into it . She was trying to talk alot when it was on. When her occupational therapist was here on thursday he wanted Tom to try to let her take a drink with it on. She did that without any trouble so that's great.

She went to see the bunny in the beginning of April . She wasn't going to sit with him no matter what anyone said. She was running around his little display, laughing and waving at him but she wouldn't go over to him. She wouldn't even touch his hand.He grabbed her at one point and sat her on his lap but she started to cry. The girl snapped the picture anyway but she's not happy. After that we went to get our Mother's day pictures done. While waiting for them she saw the bunny at this mall. From upstairs she was waving at him. She said she wanted to go see him. So I gave her another try. Same story though she would just wave to him ,laugh and run away.He was a very nice patient bunny though, he was signing to her and everything but she wouldn't go near him. She even showed him how to hop! Oh well , maybe next year.

April 1, 2006

Not alot going on right now. We had to call the doctor on the 20th because she was starting to have alot of secretions again and a low grade temp and just not acting herself again. She has had the same symptoms everytime she has gotten sick this winter so we didn't want to wait. I though maybe he would do a sputum culture to see if she still has an infection but he wanted to just put her on the antibiotics again. So for ten days she was back on amoxicillian. Her symptoms went away in a few days. Yesterday was her last dose so we'll see if this is the end of it or if they come back again.

She's been running around like a nut . Yesterday was beautiful out so I tried to get some yard work done. It didn't work out too well though, because she didn't want to be where I was. She insisted on being on the other side of the yard no matter where I was working. Of course when I made her come in for a nap she was having a major fit. I gave her a drink which she insisted she didn't want but then picked up and drank as soon as she thought I wasn't looking. She then finished it and put the cup down and headed on down the hall to go to bed. I think about 15 seconds past and she was out cold.

Last weekend Grandma S. came over for dinner and to keep an eye on her while we got some work done. She had fun playing with Grandma. Today she went to Grandma and Grandpa G's for the evening . Cousin Kim took the day off to go over and see her. She told me that she had fun there. Of course she didn't exactly tell me the truth when she told me that she ate all her chinese food.But she did tell me she had alot of grapes which was true. Next weekend Aunt Kelly and Aunt Joanie are coming to visit so that should be fun too.

We went to see the gastroenterologist on thursday. He really didn't have much to say just that she looked good and that she was gaining good. She was 28.5 pounds but that was with clothes and shoes and 35 inches tall. He said it is possible to have silent reflux so it's just something to keep an eye out for and maybe when she gets a little older, like in 3 or 4 years they will do a gastroscope to check things out. Monday we have to go to the neurologist and wednesday to Danville to the ENT doctor. The kidney doctor cancelled for wednesday so that is kind of a wasted trip . It's just for him to schedule her bronch really. They wouldn't let me schedule it without her being seen.So well drive to Danville for two hours for basically nothing but if that's what it takes to get the bronch and get her trach out that's what we'll do!

March 14, 2006

Alison's been doing good. On Monday the 6th she went to see the cardiologist. He was thrilled with her progress. He said that the surgeon who did her surgery did an excellent repair because he could barely even hear a murmur. He did an echocardiogram while we were there and said that if someone didn't know she had had open heart they wouldn't be able to tell. He said that there is a very minimal leak at her pulmonary artery where he took some tissue out. That is suppose to be there somewhat but not to be leaking badly so that is doing good. He also said that sometimes when people are on respirators long term that the right side of their heart gets enlarged from the constant strain. Her's is normal sized he was very happy with that. We don't have to go back for TWO years now!

Also on a good note. Well good because of the result not good that she is doing it. She pulled her trach out twice this week. No distress whatsoever. She was actually running around the living room and doing puzzles.She wasn't upset about it at all. The second time she did it was out of spite because we told her she couldn't have something. So she pulled off the filter and flung it and when we yelled at her for that she yanked the trach right out. She's very obstinant when she wants to be.I guess that spunk is what got her this far though.

She went to the Saint Patrick's Day parade on saturday with mommy and grandma. She had fun although she was a bit zoned in the beginning (she doesn't like to get up that early). She was a good girl and sat pretty good for the few hours that we were there.She liked all the dogs and horses in the parade.And of course the music. The weather was so beautiful all weekend that we went for a walk on sunday too, with Dad and Cody. Just around the neighborhood but she liked taking in all the scenery. As soon as we got home she said she wanted to go to bed and she fell right to sleep for close to three hours. I guess the fresh air did her good.

She has been EXTREMELY busy lately. I guess now that she is feeling better she's making up for lost time.She just goes from one thing to another in seconds . Tonight she was playing in the water bowl with the cat's toy. It used to be a stick with a streamer on it that made chirping noises. It no longer works now that it has been water logged.She is climbing on everything and loves to jump on beds and the couch. Unfortunately she doesn't have any fear and doesn't pay any attention to the edges when she's jumping. She loves to play with her Dora kitchen and that at least keeps her in one place for 5 minutes...........thanks Uncle George! She is getting very choosey . You can't just get a yogart for her she has to pick out which flavor she wants. And ever since her birthday party she's been on a grape binge. She will sit and eat 20 of them and then tonight she was complaining of a stomach ache after she did it. She still loves her puzzles and cards. She purposely puts the puzzle pieces into the wrong spot about three times and says NO then the right one and says Yeah.And she has to lean over to get right in your face and with those big blue eyes all wide shake her head no or yes. It's a scream. She will even hunt you down in another room to tell you no with the puzzle piece in her hand.

Her new teacher came on thursday. She will be back next week for some sort of evaluation but then that is it. She said that it is not necessary because she already knows up to the 3 year level.She basically knows 1-10, all the letters, colors and shapes, by recognition. She even knows some script. It depends on the writting but sometimes she can pick letters out when it's script too. When her teacher was here she was playing cards with her, she told Allie that it was two bears. Alison told her no. She said yes one, two, bears. Alison kept saying nooo and was getting madder and madder.She kept repeating yes one, two,bears.Two bears. Alison kept insisting NO!.Tom came in the room to see why she was yelling no and she ran over to him and said "NO NO" the teacher then said "yes Alison two bears, one, two. Alison said NO. Tom looked at her and said "they're lions" .Alison started yelling "yeah yeah yeah" as if it was about time that someone listened to her. She's a piece of work.

March 2, 2006

It's a sad day at our house today. Mike the cat died tonight. He would have been 18 years old on the 15th of this month. He was doing ok until last night . He died peacefully in my arms, after holding him for about an hour he just made a few little noises and passed. He was one of Alison's favorites despite the age difference . He slept in her room everynight on her couch. She used to sit there with him (if not on him sometimes),he never seemed to mind though. He did enjoy himself on saturday at her birthday party getting treats and attention from everyone. We'll certainly miss him.
Alison has been feeling much better and had a great time at her party on saturday. She has been playing with her toys ever since and Dad has already put her money she received in her college fund. She enjoyed seeing everyone and cried everytime someone left. We had to skip the happy birthday song though because that makes her cry although I don't think it would have mattered anyway because she cried as soon as she saw the candles being lit.I guess she knew what was coming next.We just had a little party because of space considerations. It's hard to fit 40 people in our house.
I made a bunch of appointments for her today since she was due just about everywhere. They wouldn't just schedule her bronch without seeing her again first so we'll have to go there just to get it scheduled. She has to go to Pulmonary, Cardiology, Nephrology, Neurology,ENT,Gastroenterology, and back to Shrinner's all in the next two months! So we'll be busy and most of them are a five minute "oh she looks good " kind of appointments. She went back to her regular pediatrician on tuesday for her recheck after the hospital and he said everything was fine. He left her on the antibiotic for ten more days. She was back to being herself and was waving to him and giving him five . I guess it wasn't that she was getting sick of doctors that she wouldn't talk to any of them last month she just didn't feel good.
Her new teacher was suppose to come today but since we have about five inches of snow she cancelled til next week. She's been working on picking out which is bigger and smaller and is doing good with that.That's about all I can think of that's new this week.

February 17, 2006

Well Alison came home from the hospital tonight. She had to be admitted on wednesday. After she was on Omnicef for 20 days from the last time she was sick she started spiking temps on the 20th day.She was up to 103 so we took her back to the doctor. The doctor she saw thought that it must be viral since she started running the temps while she was still on the antibiotics. She said to give it 5 days to run it's course and if it wasn't anybetter by tuesday to come back. Both Tom and I had head colds too so this sounded reasonable. Well all week she would be 102.5 -103 everynight. Friday night she was vomiting with it and we couldn't get her temperature below 101. Saturday the same story. Sunday she was a little better. Grandma S. came over and played and had dinner .She was a little whinny but not terribly sick. Tuesday we decieded we would call the next morning and have her re-seen. Well tuesday night at work Tom called and said that she wasn't breathing very well. Her sat was down to the 85-86 range. He temp was up to 102.8. I had him give her a respiratory treatment with the motrin and in a little while her sats came back up to 93 or so.She also threw up again. After I got home from work she was very clingy and whinny all night. I couldn't keep her temp down even with Tylenol and Motrin every 2 hours and a cool bath. The best I could get up to 5 am was 101.5. We got up at 9 and called the doctor. When she saw him he thought she needed to be admitted for IV antibiotics because he thought it could no longer be a virus (which is why we brought her back). He suspected that the oral antibiotic just wasn't strong enough for the organism. So Moses Taylor didn't have any beds so he wanted her to go to Mercy. We got there around 12:30 on Wednesday. By the second dose of antibiotic around 2am she was dancing and playing again. I guess it was doing the trick.She wasn't happy about the IV being in her foot cause she couldn't really get up and walk around the crib although she found a way by the next day. They had to stick her twice to get the IV and they couldn't draw the blood work off of it so they had to stick her two more times for that. On Thursday the doctor told me that her blood test for RSV , and the flu were negative but the sputum was growing some bacteria. It takes 48 hours for the final result to come back.They thought she had tracheitis again. Today when he came in he just said he thought her lungs sounded good and that we should have the culture back by the end of the day and we would go from there. It sounded like he might let her go the next day. Well around 3:30 he called me and said that the wouldn't be back til tomorrow and we could go home if we wanted and he would just give us an antibiotic for tonight and when the culture came back tomorrow he would call a more specific one in to the pharmacy tomorrow when he gets the culture. Unfortunately I couldn't reach Tom to tell him this . He arrived about 45 minutes later but didn't have the truck with the car seat in it so he had to go back home again and get the other truck. We left there around 6pm.She ate some chinese food and sucked down two glasses of juice as soon as she got home so she must be feeling good. She has been taking every toy she owns out .Right now she is climbing up the stairs gotta go..........

January 25, 2006

Alison is feeling better. She is still coughing a bit now and then but she's running around playing all day. Her fever has been gone for about 5 days now. She went for her recheck at the doctors today. Things were good,he said her lungs were clear . She does have to continue the antibiotic for the whole 20 days though. And she still has to take her breathing treatments til the cough clears up. I think she's catching on to the doctor's office though . The last two times she went there she wasn't happy when she got in the exam room. I think she has figured out what goes on there. Her appetite has improved and she ate very well today and even fed herself the entire bowl of oatmeal before bed tonight without making too much of a mess. Of course she had to stop in the middle of it to dance to the theme to Beat the Clock ,that old game show. She loves the Hickory Dickory Doc song with the mouse.If you tell her it's coming on she gets all excited and starts grinning from ear to ear. She doesn't bother to watch the show though just the introduction. She does like to watch Win Ben Stien's money. What can I say she's not a normal toddler. For some reason the Burger King guy cracks her up too. She really used to love the commercial where he was like King Kong she would be rolling when that came on.
It's snowing out so I'm sure she'll be looking to go outside tomorrow. She likes to go in her sled although she doesn't look it when your dragging her around the yard . As soon as you stop she starts yelling. We took her out on monday and she had a good time going down the hill.Cody had fun in the snow too. He doesn't get much exercise lately. Not sure if it was that or just that he's getting old but he was worn out most of the week.
Congratulations to cousin's Kim and Louie who are having a third daughter in June. Can't wait to meet her.

January 18, 2006

We had and eventful day. We left around 11 am for Philly and got back around 11:30 tonight. While at Shrinners after greeting everyone in the waiting room and playing with the toys Alison started getting clingy and the chills. Then the flushed face and fever came. It was only 101 at the time but it took about 45 minutes for them to get us some tylenol. She was getting progressively hotter.I would estimate her at 102 at least before she got tylenol.Her doctor was upset that she was sick because she was breathing pretty rapid (60x per minute) so he wanted to have someone come look at her before we started for home. In the mean time she threw up all over herself and her mother.Why is it Dad never gets that pleasure? So the lady came and checked her out , said her lungs sounded ok and her ears were not infected, she gave her some tylenol. They were extrememly nice to us and got me a scrub shirt and alison a patient gown then some other lady found her a brand new sweat suit and socks to wear home.So we got cleaned up and left there. She looked progressively worse on the way home so I called the pediatrician to see if we could stop there on the way home. They were going to be gone by time we got to scranton so they told us to stop in the emergency room if we thought it was necessary. We did. When we were driving she just couldn't seem to get comfortable and wanted me to pick her up. ... a sure sign she doesn't feel good. Otherwise she'll only let you hold her a minute and she's gone. She was still very warm it didn't seem to break for almost an hour and a half. Then it went back up. By time we got to the ER she was 103. Her heart rate was up to the 170's and she was still breathing 60 per minute. The only good thing was her oxygen saturation was 93 which wasn't too bad. She's usually 98 but it was better than last time. We had to keep suctioning her for tons of thin secretions all the way home.By time we got to the hospital her secretions were bloody. They had to stick her twice for blood work, her White Blood Cell count is up to 16, Her chest xray showed a pneumonia.They gave her Tylenol but that didn't really help, just brought the temp down to 102 . So they gave her some Motrin and an antibiotic. Unfortunately the Motrin works better for her but she is suppose to avoid it since she only has the one kidney.They didn't have any beds in their pediatric unit so they told me if I was comfortable with it that they thought she could go home and go back to see the pediatrician first thing in the morning. So that is what we did. When we got home I put her to bed within 15 minutes or so she was asking to get out of the crib. Since then she has eaten some goldfish and some of my soup .That is the only thing she ate all day.She is now dancing around the living room so she must be feeling better, I'm not sure if it's the one dose of antibiotic or the fever breaking but she's acting normal now.
And if that wasn't enough bad enough for the day she has to have another surgery on her right hand. He's waiting to see how some other people do with the surgery he wants to do on the left. He wants more data for some reason. Anyway her new thumb is growing in the base where they don't want it to grow. I guess when they do the surgery they make a cut thru the growth plate so it doesn't grow at the base but sometimes in kids it just grows back. That is what happened so he has to stop it again. It grows from the other joint areas but they don't want it to grow from the base. It's just a short out patient surgery but they still have to anesthesize her. He said it's only about 20 minutes they just make a small cut and drill a hole thru it.So that will be in 4 or 5 months , there's no rush there. So that was our day!

January 6, 2006

Hope everyone had a nice holiday. Alison certainly did. Way too many presents. She spent Christmas at home, Grandma S. and Uncle's Joe and Pat came over for dinner and a visit. On the 26th she went to Grandma and Grandpa G's and had a nice visit. She has been doing her puzzles and books everyday since Christmas. She just loves the doll stroller that Grandma and Grandpa gave her. She likes to share everything with dolly ,milk ,snacks ect you never know what you'll find in the stroller with dolly. On the 2nd we went to NJ with Grandma S. to Aunt Joanie and Uncle Gene's house. Aunt Kelly and Uncle Joe came over to visit too. Alison had a great time playing with everyone. And even got to give Casey and Duffy their 7pm snack.Cousin Colleen and Ronnie came over later in the evening too. Unfortunately Uncle Mick wasn't feeling well so we didn't get to see him. She was exhausted by time we left and was asleep in the car before we even got out of Clifton. Before we went to their house we stopped to see Daddy's friend who has a pet store in Clifton. Alison picked out a puppy she liked the best. It was a Bernese Mountain dog the biggest one there the guy said it would get to about 100 pounds. She wasn't interested in the little ones at all, just kept going over to the huge one. She was a really nice dog and on sale as the guy so nicely informed me. Only 900 dollars! I think we'll stick with the stuffed puppy Aunt Jonelle got her for Christmas. She named him "up" . That's her new word she learned this week and is quite proud of herself when she says it.
She's been on an eating strike lately and has to be coaxed into everything. For about 4 or 5 days alls she would eat was Cheerio's and Goldfish. She has improved since then but still doesn't eat like she used to .She spends her time whinning instead. She's definately turned into a toddler with a temper.She starts throwing things when she is told no to something she really wants to do.Then two seconds later she's laughing and dancing. Speaking of which Aunt Kelly taught her to tap dance when she was there and she does it all over the house now. For two days she cried everytime I tried to take her shoes off even to go to sleep because then she couldn't make tap noises. She's been outgrowing alot of shoes and clothes lately she must be getting taller again.
Yesterday we went to see her pulmonologist he was very pleased with her condition. He thinks that her trach will be able to come out in the spring also. He really didn't have anything else to add. Just to come back if she had any problems. Next week we go to Philly to see what the doctor wants to do with her left hand.
Today we went out in the snow with her sled she got for Christmas. She went (well pulled by Mom) all around the property . She looked indifferent about it but when I tried to take her off she cried to get back on so I guess she was enjoying it. I know Cody was having fun out there. We stayed out about an hour and then had to come in because her therapist was coming. She screamed and cried for 20 minutes when I took her in. She kept going back over to the window and pointing out.
Happy Birthday to Uncle Tom on Jan.5th

December 21, 2005

Alison is feeling much better. She's back to her happy dancing self. She has been an eating machine all week.So much so that I had trouble zipping up her coat because her belly was so big.The doctor thinks it is just from the steriods and that it should end this week since she is no longer on them. We went yesterday for her post hospital check up.Everything is good. She gained 2 pounds since she got out of the hospital! Currently she weighs 25 lbs 3 oz. Unfortunately because of this eating problem we don't have any Christmas pictures. We went last weekend but we had to wait 40 minutes for our appointment and by then she was hungry again and wouldn't do anything but cry that she was hungry. For some reason the lady felt the need to keep taking pictures and they were all just pictures of her sobbing that she was hungry.I am going to try again on friday if they have an opening. I also tried to get her and Cody's picture for the Christmas card but once again ............she got hungry. Not to mention Cody's lack of cooperation. Oh well maybe next time.
Her newest habits are giving five and this fake laugh thing where she bends over and just keeps cracking up.

December 12, 2005

Well Alison spent the last week in the hospital. She started vomiting and had a temperature of 101.6 last monday night when I came home from work. We took her to the emergency room because she couldn't keep any Tylenol down. By time we got there her temperature was 103.5.Her oxygen saturation was 88%. They gave her an antibiotic, tylenol and an IV. They wanted her to stay in the hospital for antibiotics for a few days but her doctor doesn't go to that hospital so she was transfered to Scranton. They diagnosed her with pneumonia even though it didn't show up on her chest xray. Her sputum culture was positive. She was pretty bad on Wednesday and I thought she was going to wind up back on the respirator. Her oxygen saturations were down to 82-84% on 60% oxygen. She had both a croup tent going and oxygen thru a trach collar. After talking with her doctor in the morning she deceided to give her some steroids and a different additional antibiotic and see if that helped her. She had a repeat chest xray done which still didn't show anything and some blood work which was negative. Originally her White Blood Cell count was elevated to 12.8 or so ,it was normal by wednesday but she looked much worse. She was really struggling to breath.I gave them a few hours to see if she would turn around with the new meds and she did. By that evening she was playing and smiling,even after being stuck seven times that day between her new IV and blood work. She got progressively better after that although she is still not back to normal. She doesn't have much of an appetite and is coughing alot.But at least she dances and plays for short periods of time. Once she got the IV out last night she was doing laps in the crib she thought it was pretty funny to squish her face against the plastic crib sides and make pig noses. She actually met the little boy from the doctors office while she was there,Santino. She gave him a hug in the doctors office one day because he was crying. He was admitted on friday and his mom remembered Alison.So he used to stop in everytime he was walking by to see "the bebe". He's actually only 1 month older than her but 3 inches shorter. The plan now is 10 days of antibiotics, tapering the steriods off, and respiratory treatments twice a day.We have to go back in a week for a recheck. Hopefully her appetite will pick up and she needs to drink more than she is . I guess the rest will just take time. She must be feeling a little week because she isn't walking the best and she keeps falling. The real tell tale sign that she isn't feeling good is she actually sits on the couch and cuddles for more than 10 seconds.

November 28, 2005

Nothing really going on right now. We have a few appointments later in the month .One for Shrinner's to see what they are going to do with her left hand and one to her pulmonologist for her regular check up. She is back getting her synagist shots every month to protect her against RSV ,the virus kids get. It can make premeeies or kids with respiratory problems very ill so they vaccinate them from nov. til may. So that means two shots a month for her.She has to get two because it's too much fluid to put in one shot.It's based on weight. I guess when they made the vaccination they must have just planned on premeeies getting it or they would have made it different. Anyway now that she doesn't have a nurse anymore I get stuck giving it too her or the alternative is to drive her to the pediatricians office and wait around for at least a half hour so they can give it.
On a more normal front she is running us ragged being a regular toddler complete with laying on the floor fits and all. I am not sure she even knows why she is doing it half of the time, I know I don't. She is VERY busy lately, into everything.Opening every door and cupboard she can find, throwing things into the garbage can that don't belong there,trying to do things she physically can't (sitting sideways on her riding toy while trying to lean backwards).....that didn't work out too well for her needless to say. She is mastering some other physical skills though ,she has learned how to march and tonight deceided she would put my clogs on and walk around the house.She's also doing very well with her numbers , letters and colors.Tonight I dumped three of her puzzles on the floor and mixed all the pieces together she was able to match them all up twice. Friday she is going to the Saint Joseph's Christmas party , that is where she gets her therapy thru. Santa will be there with a little gift for the kids and they have a full turkey dinner. I'm sure she'll have a good time with all the kids.
We want to wish Lily a happy 1st birthday tomorrow ... see you at the party on saturday.

October 31, 2005

Happy Halloween!!!!
Alison went trick or treating tonight to both Grandparents and to the hospital to see her friends.She was a good girl she left her hat and wig on the whole time. She had lots of fun and I even got her in bed before 2am tonight!
She had a busy week. The wedding on sunday, she loved dancing with all the kids and Grandma too. When we looked at the DVD the next night she got all excited when she saw the kids dancing and started laughing and dancing around the living room again. She especially loves cousin Lily her mere name gets her smiling.She's pretty good at picking out all the relatives by name now when she looks at pictures. I guess she got bored with the same old flashcards. She now likes to look at pictures..........Oh no I wonder where she got that from.
Friday she had to go to her regular pediatrician for her 18 month old check up.He was very pleased with how she was getting around.She was doing laps in the exam room the whole time we were there. Her height was 32 and 1/2 inches (50th percentile) and her weight was 23 lbs 3 oz (25th percentile). Her graph for height was the same but her weight was up from the 5-10 percentile so he was happy with that. Unfortunately when he checked her ear it was still pink after being on the antibiotics for a week. And her throat was now red which it wasn't last week. So he didn't feel it was working and put her on another antibiotic for 10 more days.She has been on it four days now and seems better, she's back to eating good and isn't whinny anymore so she must be feeling better. On our way out a little boy was being weighed and he was crying about it. She had to stop because she doesn't like when other kids are crying. The nurse doing it knew her and started saying hi to her. The little boys mother said "see the little girl isn't crying " so he sort of stopped and she let him come over. Alison went over to him and patted him on the shoulder as if to say "it's ok".It was extremely cute. I thought his mother was going to cry.She kept saying "Oh my God how sweet". By then he was smiling and they were waving at each other . He was a little shy and smiling but kind of hiding behind his mother . So then Alison went over and gave him a hug and a kiss. She's not exactly shy. He didn't seem to mind though, he just kept smiling and waving. He was a really cute little blond.
On the therapy update her therapist brought a puzzle with colors to match on thursday. Alison put them all in right, she thought it must be a fluke so she made her do it again.She got them all right the second time except for the purple and brown which were next to each other. Physically she's getting much better with her balance. She hasn't been doing any headers lately she can even run. She also has a ride on toy I took out for her the other day and she was able to get on and off right away and drive it around the living room.

October 21, 2005

Lot's going on here now. About a week ago we went to the ENT doctor. He said that her trach still looked floppy but he thought it looked better than it did before. He wants to keep her trach thru the winter, that was really deceided before he even took a look. Her other appointment with the pulmonologist which was suppose to be the same day got messed up so we have to re-schedule that. Her regular check up with her pediatrician also got cancelled and needs to be rescheduled. She is sick this week though. She really hasn't been herself all week, just cranky and clingy. She usually only cries for a good reason but lately she's whinning about everything. Wednesday she started vomiting and thursday when I came home from work she had a temperature of 102.2. It came down with tylenol but she kept cringeing and grabbing her face and head.So we took her to the doctor today and her right ear is infected again. Respiratory wise she seems fine though so it's not too bad. She's on an antibiotic.Hopefully she will be feeling better by sunday. She finally got weighed again.Most of her doctors don't weigh her but anyway she is 22 lbs 10 oz and 31 inches tall.
On the fun side she went to the pumpkin patch with us and Grandma S. on monday. She had alot of fun. She wouldn't smile for her pictures though,she didn't want to sit still that long. She really liked the goats except when one tried to kiss her, she ran away. But then she went right back over and stuck her head in the little square they look out. She also liked the feel of the sheep.She's getting ready for Halloween. At first she wouldn't wear the hat with her costume but once she saw it on her head in the mirror she liked it and didn't want me to take it off of her.We'll see what happens on halloween.

October 1, 2005

Alison had a wonderful vacation.She spent the week in Ocean City NJ. The weather couldn't have been nicer high 70's to 80's.
She loved the beach and the boardwalk, she went for a walk there everynight. We had to stop every night and see Mr. Fudge and Mr. Taffy (her favorite)some dolls that moved in the store fronts. She even went for a bike ride on the back of Mom's bike one night.
At the house she was very good , a little whinny at bed time the first two nights but once she got used to the place she was back to her normal, just hand her binki and tell her to go night night. For some reason she loved the two pieces of fake fruit in the one bedroom. As soon as she got up in the morning and before she would go to sleep every night she had to say good morning and good night to them. The mere mention of Mr. Apple or Mr. Watermelon brought a big grin to her face.

September 16, 2005

Allie went to the doctor today at Shrinner's. He was thrilled with her progress his nurse went out and got the therapist to come in and see how good her thumb was doing.She is able to pick up things as small as a cheerio or thin as a piece of paper using her thumb.He said that she doesn't have to wear her splint anymore except at night and only for one more month instead of two since she's doing so well with it. He is undeceided about the other surgery yet. He wants to see more how she is usuing the left index finger before he does it. We don't have to go back for three months.And also her occupational therapy is cut back to once a week again. Afterwards we stopped at CHOP to see her old friends. Most of the ones she knew well weren't there or don't work there anymore but she did get to see and play with a few of them.We stopped at the mall on the way home and she got a nifty poncho. Yes Joan and Kelly I am letting her wear ponchos!!!! And it even has a hat to match.
Alison had her 1 year evaluation from Early Intervention the other day and she did good. Physically she is slightly behind because of her hands. They put her back a little and that lowers her score for physical level to the 12-18 month level. The special needs instructor said she was right on target with all of her stuff but the best news was the cognitive area. She scored in the 22-24 month category. She does really good picking out things from flash cards. She got 27 out of 32 right the other day. If she doesn't know the picture and you give her the sound of the first letter she can usually pick it out. So she is doing really well with that stuff.

August 31,2005

Alison is doing well with her thumb. Her therapist is very happy with things. He said that alot of kids don't even use it the first week and she has been using it whenever it's out of the splint and you put something in it. She tends to scissor with the other fingers at times but if you remind her and put the object back between the thumb and forefinger then she will hold it that way.
Things have been a little busy this week. Her nurse had to quit for personal reasons and they didn't have anyone else to send so now we have to find a new agency. The one agency just outright told me that they have trouble staffing this area and I would be better off trying somewhere else. Another agency is looking for some staff but there aren't any guarentees. So at this point we don't know how long it will be til or if she'll get a new nurse. So Dad is on duty every night while I'm at work.She gave him a hard time the first night I think she knew she could get to him. She was refusing to eat her meals and would only eat her yougart and bannanas.She did better tonight and was actually a good little girl.

August 23, 2005

Alison went to the Harford Fair tonight. Here's a few pics from there . She wasn't quite herself all night , very serious until she went for her old time picture. She was smiling for that. She dressed as a prarie baby. She got to see all the animals and wasn't afraid of any of them. She got to pet some of them.She liked the little rabbit in the picture (so did Mom) she had a conversation with him for awhile.
On the hand front her therapist is happy with her. She can use the thumb and holds things lightly . She won't be able to use it completely for a few months when the tendons shrink back down. But he was very satisfied with what she can do with it for now.Her scabs have all fallen off so it looks much better now.
She's starting to put a few signs together to make phrases. They usually always have to do with eating. Either "me hungry" or "hungry please".She likes her food!

August 20, 2005

Well after a long day in Philly Alison got her cast off yesterday. They were very pleased with how fast it healed. The suture line looks really good. They had her try it out on a few toys and she was using it to pick up some toys. She has to wear a splint continuously for the first week then it will gradually be decreased over the next few weeks.She will need to wear it at night for the next 12 weeks. They want to prevent her from putting any pressure on the joint for now. She only has some gross movement of it now but eventually as the tendon's shrink down to the size of the thumb she will get fine motor control.They expect that to take a few more weeks. She has to have therapy everyday for a week then 2-3 times a week for awhile. She was wore out by time we got to the car. We were there for 6 hours plus the three hour ride each way and she only had 3 hours of sleep the night before! She did sleep all the way home. Once home she was revived so I took her to the Pioneer Nights picnic. There she had some fries cousins Debbie and Amanda gave her and visited with her cousins. Then she had some chicken strips while watching her first fireworks. Afterwards she was lisening to the band The Poets and dancing. Along came an elderly couple who danced with her for an hour! She loved the guy,she kept going over to him and he would show her a dance then she would try to do it.I'm not sure who had more fun her or them.

August 14, 2005

Alison had a fun weekend. Saturday she went to cousin Kim and Grandma G.'s birthday party at Uncle George and Aunt Kathy's house.She got to visit with everyone and go on the swing and the slide. Cousin Richard bounced her on the trampoline which she loved.Later on Daddy took her in Uncle George's pool. She had lots of fun with everyone. When she came home she watched her new Barney DVDs Grandma gave her.
Sunday she went over to Grandma S.'s and had dinner with Grandma, Aunt Joanie and Uncle Gene. She had alot of fun playing with them during dinner and was quite the clown. She had some vanilla pudding Grandma made especially for her and she finished every bit of it. After dinner we visited for awhile. She kept bringing Uncle Gene every coaster Grandma had.She was a very good girl most of the night but showed them her temper at the end when she wanted her nap.

August 8, 2005

Nothing much going on. Alison was on her way to the Wayne County Fair tonight but then it rained all day so we had to stay home. She had her occupational therapist here today and he was very happy with her progress. Especially how she is using her casted hand and how she can carry things (her bucket full of toys) with it. She loves to color now and must do so about five times a day.She can even manipulate the crayons around between both hands to get the point where it should be.(She only ate them once!) Her therapist was very happy with that, the manipulating, and thinks once the cast comes off she will do really well.She likes to go out on the swing every evening with her nurse and then take her walk around the yard.That's her little routine before bathtime.Her friend Rudy snuck out today and hurt his leg somehow when he was out in the woods in the back. He was limping quite a bit but is better as the night wore on.We went to get some pictures taken at the studio on friday.We didn't have an appointment but the lady said she could take us as a walk in if we did it right then and there. Alison was asleep in the car at the time so I had to wake her up quick and take her in the store. Despite that she still smiled nice for every one of them. I only vetoed one of them because it wasn't a good smile. So they should be coming by the end of the month, I'll try to scan and post them.

July 29, 2005

Alison did so well with her therapist on thursday that she got a sticker. It just wasn't easy getting her picture with it because she turned into a wild woman after she was done.She was in an extremely good mood that day and was dancing and throwing herself all over the place.We only have about 20 more days til her cast comes off. Her doctor is going to be away for a week so he's taking it off in 4 instead of 5 weeks.Which is good because it's filthy already, she uses it to push food into her mouth and no matter what I cover it with she manages to get it dirty.
She loves her new Barney dust buster Aunt Kelly gave her and we have to listen to the little song over and over. She's definately a Barney girl.When he's on you can't get her attention. I've posted a pic of her watching her Barney video Grandma and Grandpa Green gave her,notice who's in the back of the playpen. I think Rudy thinks all her stuff is his. If it's not the playpen then it's her highchair or crib I have to kick him out of.

July 27, 2005

Alison is adjusting wonderfully with her cast. She uses it to shove food in her mouth.She's been using her left hand now and is becoming more skillful with it.She gets mad if I try to feed her. She's had a busy week, monday she went to meet cousins Karen and Ricky from California.Aunt Joanie and Kelly came in also and we all , along with Grandma S. went to Chuckie Cheese and then back to Aunt Theresa and Uncle John's for pizza.She had a blast.She wasn't thrilled with Chuckie Cheese at first but once the clock struck one and she actually woke up some she started to play and have fun.She didn't like the rides ,they were fun to play with til I put the token in and they started to move then she would start to cry and reach for me to take her off.Even Barney couldn't make her happy.She had lots of fun with the babies at Aunt Theresa's. Lately she's been trying to hug all the kids she sees.
Tonight we went to the Clifford Fireman's Parade and picnic afterwards. She liked the parade and sat very contently in her stroller the whole time.She especially liked the majorettes.At the picnic she went on both the little and big train rides with mom. Unfortunately she was too small for the other rides but she enjoyed the picnic.She even tried out the duck pond but only won a tiny little squirt gun.Maybe we'll use it on Rudy when he's being bad.

July 20, 2005

Well we just got home from Shrinner's a little while ago. Alison did very well. Ther surgery was as planned for 8:00 on tuesday and she was discharged at 2pm today (wednesday). The doctor said that there wasn't any nerve in that thumb so she never would have been able to use it. Her index finger only had one artery instead of two but that is quite common with missing or shortened radius'.The surgery took two and a half hours.She got to watch a Barney video in the preop area before she went in so she was happy and dancing.She more or less slept all day afterwards except to have some juice and fruit puffs. They gave her one dose of morphine on tuesday and a dose of tylenol with codiene on wednesday,other than that she didn't seem to have much pain.She was more upset about the two IV's in her feet and the cast on her arm.The only loose extremity was her left arm which she doesn't use nearly as much. However by the end of the night she didn't want me to feed her anymore and she pushed my arm aside and started to do it herself with her left hand.She woke up at 5:30am today for something to eat then went back to sleep.When she woke later in the day she was very happy and was playing with the housekeeping staff.Her surgeon stopped in around 7:30am and said she could go home.He was happy with how the hand looked. He said 4-5 weeks and then the cast will come off.About three months from now he will do the other hand, the straightening surgery then the thumb six months after that.The people there are extremely nice. They gave her lots of things also,a big stuffed duck, then she got to pick a stuffed animal out of a bag of them (she got a kangaroo beany baby) and then she was given a crochet blanket when she got out of surgery.Oh she got to pet two therapy dogs on the way out and the little one gave her a kiss.On the way home she stopped off to see Grandpa and Grandma Green for a quick hello then she stopped at Grandma S's to pick up Cody who was happy to see us.She seemed happy to see him too she keeps petting him tonight and the cats too, I think she missed them.She's walking around the room as I type this.She has learned to rebalance with the cast and also can get herself to a standing position using her left arm and the cast for support.I don't think anything can stop this girl!

July 13, 2005

Well Alison is off and running now. She's all over the place walking and doesn't even want you to hold her arm for support. She has just taken off in the last three days, she can even dance without loosing her balance now.
Tonight after I put her to sleep I heard a noise and went to check on her. She was standing in her crib knocking on the wall to come out. I'm afraid what will happen there next week when she has her cast.She'll be putting holes in the sheetrock.
Lately she's been going crazy over banana's she eats a whole one each time on her own, no more cutting it up.But at least she has a really good appetite. The other day we took her to Wendy's and I got her the chicken nugget kids meal .Instead of the french fries I got her mandarin oranges and she loved them ,she ate them all. Too bad she's not as enthusiastic about peas.She's not really a fan of green vegtables.
Probably won't update til after her surgery next week except maybe the pictures. I'll try to update as soon as I can after the surgery. Maybe Tom will be able to do it the night of surgery when he's at the McDonald house if he's able to get to use the computer.

July 7, 2005

Well Alison is settling in her new home. We closed on the other house last thursday. Nothing is in order yet except for Alison's room but we're getting there.I think she thinks it's a big adventure. She likes to go thru all the boxes and pull everything out.She also likes to escape out of her room on her nurse and scoot down the hall to see what's going on now.She's walking quite a bit, still a little wobbley but she can make the length of the hall without falling when she wants too. Her toddler temper is starting to come thru and she likes to take tantrums when she can't get her own way, which is becoming quite a bit because she's very independent and determined to do what she wants.We are already starting the battle over how loud she can play her music. She knows how to turn her CD player on now and she BLASTS it. She has alot of different dance moves now but of course won't do any of them as soon as I take the video camera out. We had a satalite dish installed today so she can get her NOGGIN back.She loves Franklin and Moose A. Moose. But I think her absolute favorite character is Barney.
Sunday she went to cousin Charlie's 40th birthday/4th or July party. She had alot of fun with all the little cousins. She was back on the trampoline and playing in the grass. She wasn't too happy that she couldn't go in the sandbox with the other kids, but with her trach she's not allowed. Nor in the pool. She spent the rest of the day eating. She has been eating constantly , you no sooner get her out of her high chair and she's signing that she's hungry. She's getting much better at signing please when she asks for something.Two weeks to till her surgery!!!

June 19, 2005

Allie had a good weekend. We have been doing alot of moving, the end is getting near. Saturday they finished up the new floor and the carpeting so we couldn't get much done at the house.So we just did a little then went to St. Rose Church picnic. Grandma S. came with us. Alison had fun even though we weren't there long.She liked the "band" which really was just a young guy and a lady around 70 who was singing Led Zepplan........but you know her she likes any kind of music. She also got a blessing from father who we ran into on the way in.He asks about her practically every day that I see him at the hospital.Sunday we got much more accomplished at the house while Grandma looked after Alison.She wasn't very interested in her spagetti though. She kept hitting Grandma up for bread and butter instead.So by the time we got home tonight she wanted to eat. She ate two bowls of Cheerios plus some fruit puffs and two glasses of milk!! I'm surprised she hasn't exploded by now.Nothing wrong with this girls appetite. I don't know what she has against spagetti, it doesn't make sense because she likes ravioli, rigatoni and spagettio's.

June 14, 2005

Alison walked across the living room tonight and managed to stop without falling.She wanted to get over by the TV to see Three's Company. She loves Jack Tripper.Especially the beginning where he falls off his bicycle in the sand. For some reason that strikes her as very funny and she'll start laughing and turn to make sure your watching it too.

June 13, 2005

Alison went for her follow up appointment on friday and the doctor was very pleased with how she looked. He even said she didn't have to finish her last day of respiratory treatments.She doesn't have to go back to him (her pulmunologist ) for four months now.We have rescheduled her surgery for the middle of July for her hand. Hopefully nothing will mess it up this time.
She can take a few steps now on her own but she's very impatient and won't wait until she gets her balance before starting most times, so then she has to run to keep her balance. She's very proud of her walking and expects a hug and an atta boy at the end .Her sign language is coming along, she knows "hungry" which she'll tell you frantically, "more", and "please" which she needs to be reminded to use.We're up to 12 teeth now.She likes to feed herself now regardless of what it is, mostly she is starting to prefer real food to baby food.I guess she thinks she's a big girl now that she is totally off of her baba.Next is binki that will be a chore. She takes that going to sleep. Well actually she has to have two. One to suck on and one to poke in her eyes and ears. Hey it keeps her happy who am I to question.

June 5, 2005

Alison had a full fun weekend. On saturday she went to cousin Mary's wedding and had a good time. She danced all night with Grandma S. and Aunt Joanie.Then went back to Grandma's for some visiting and a ride on the wooden pony. On sunday she went to the CMC Neonatal reunion at Nay Aug Park. There she got to ride a real pony and meet Ronald McDonald. From there we wandered on down to the zoo to see the animals. By sunday night she was exhausted. Not a peep out of her when I put her to sleep tonight.

June 1, 2005

Miss Smarty Pants knows how to climb steps now and doesn't like to hear no for an answer.

May 31,2005

As most of you know Alison spent the last week in Danville at The Janet Weiss Children's Hospital. She started acting not quite herself on saturday but was eating and drinking fine. She was actually outside playing on the swing and with the flowers, then we went out to eat at the Olive Garden. Sunday she was a little less herself again but nothing really obvious.She didn't eat real well but was playing and breathing ok. On Sunday night she was breathing a little heavy so I put her back on her vent for the night and she settled right in and was breathing normal. When we woke monday she was breathing 60 times a minute and in obvious distress. I called the doctor and was going to take her in but then deceide she just looked too bad for a doctors office. So we took her to the Emergency Room.Her oxygen saturation was 88% when we left the house and down to 84% when we got to the hospital. She usually runs between 97-98%.They gave her some oxygen and steriods. Put an IV in her and gave her some antibiotics. They did lab work and an xray.The doctor there wasn't sure if it was asthma or an infection but was leaning more towards asthma. She got better with the oxygen and her saturation came up to 98% but only if she stayed on 100% oxygen. Eventually after the medicine started to kick in they were able to lower it to 50%.We spent 8 hours there. They deceided she had to stay but when the doctor spoke to her pediatrician he said he wanted her to be shipped to Danville where her pulmonary doctor is.This turned out to be a good thing since CMC doesn't have a pediatric respirator for her. When they called her doctor at Danville he wanted her flown down so away on the helicopter she went once again.She was not happy about being strapped to that gurney much less leaving us.But we didn't really have a choice. When we arrived at Danville we could hear her screaming as we were walking down the hall.For someone who wasn't suppose to be able to talk with that trach she can certainly wail.Once she saw us she was happy.When I talked to her doctor the next morning he didn't feel it was asthma but thought it was a viral pneumonia. He said there wasn't any obvious patchy area on the xray but there was some changes in markings.She had tons of secretions and had been having alot but she was also getting some teeth and she always gets extra secretions with all the drooling so we didn't think anything of it. The original doctor told us her ears were fine but the resident at Danville told us she had bilateral ear infections.So they put her on some antibiotics for that. They also deceided tuesday morning that she would do better on the vent with some oxygen and CPAP.Just while she was in the acute phase he felt she needed it.She was afraid if I left the room and would scream bloody murder. She had student nurses one day who deceided they were going to give her a bath. I ran down to the cafeteria. When I returned with my lunch a few minutes later there was linen everywhere in the room the two students were all disheveled and she was sitting in the middle of the bed with a big grin on her face.The one turned to me and said "she gave us a real hard time , then she peed on us". They looked like they went thru a war. She also had a male nurse that she worked out a deal with. If I left the room he was allowed to sit in the chair in her room. He wasn't allowed to come near her or her crib but at the same time wasn't allowed to leave the room either. He was ok as long as he stayed on his chair. She liked him , she just didn't want him close unless I was there with her.So eventually they weaned her oxygen off but she still has to stay on the vent on the CPAP until we go back for a checkup.She had the antibiotics for a few doses for her ears but then they stopped them cause they felt they were cleared up. The day before she left the right one flared up again so she's on another round of antibiotics. As for her lungs the repeat xray a few days later really was pretty clear so he thought maybe it was tracheitis or something in the upper airway. The following day the culture from her trach came back showing a bacterial infection. So now she is on nebulizer treatments with antiobiotics in them.She has been eating like crazy lately , I'm not sure if it's because of the steroids or because they didn't let her eat for three days and she's trying to make up for it.We're just glad to be home so we can get some sleep. They would wake us every hour to two hours for something or another.
On the development front she took a few steps yesterday on her own.She still gets too excited and either runs or starts dancing then she falls down, but we're getting there..She likes to say "yeah " also , she says it to everything including anything anyone says to her on the phone (which she loves). I guess it's better than saying No all the time.

May 18, 2005

May 18, 2005
Well Alison has not been on her vent at all since the 15th.She is off completely now even at night.It must feel good to her not to be connected to anything at all. She's also working on her walking. She'll stand alone but then she tries to cheat when you want her to walk. She'll try to reach your hands , if she can't sometimes she'll just sit down and crawl to you. Other times she just runs and dive bombs at you.
She'll get to meet everyone at the Philadelphia Ronald McDonald house who heard so much about her but never met her.We'll be staying there the night before her surgery and then Dad will be staying there the night of surgery. I'll be staying with her. They only allow one parent to sleep over.Not sure yet if we'll stay there the day of discharge or not . Depends on the time they let her out of the hospital I guess.Funny that's the same place we spent last Memorial Day!



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May 8, 2005

Alison wants to wish everyone a happy Mother's Day. She has a full weekend planned. Today she went to cousin Charlie's 3rd birthday party. She had a lot of fun playing with all the kids. She especially liked Charlie's baby sister Lily.Also she really enjoyed bouncing on Charlie's trampoline with Aunt Kim.Grandma S. went with us to the party. Afterwards we moved a car load of things to the Honesdale house.(For those who don't know we sold the Thornhurst house and have to be out the end of June). Afterwards we took Grandma to dinner.Tomorrow she is going to dinner with Grandma and Grandpa G. and the Green gang. I'm sure she'll have fun there too.

May 5, 2005

We went to Shrinner's yesterday and basically they determined that she isn't using her right thumb at all and probably never will so they are going to take it off and move the other finger over to make her a thumb so at least she will have one functioning hand. The left hand will be straightened after that sometime and then she will have the same surgery to make a thumb on that side but they don't have as high of hopes for that thumb because her fingers on that hand are kind of stiff and not as functionable.When she has the left one done she will have to wear a sort of fixator on that arm for three months. It's a metal bar with screws that holds it in place.Then six months after that surgery she can have the thumb on that hand done.The surgery on her right hand will be done the end of the month. She will have to stay overnight only to check the circulation. Then she will have to keep it casted for a month.Once the cast comes off she has to have physical therapy everyday for at least a week.So it's back to the Ronald McDonald house for us. We have to go the day before because she is the first case of the day and has to be in the hospital by 7am!

April 30,2005

It's been a pretty quite week,although Alison has learned to scream for fun . Mostly at 3am! She's doing really well with the straw and I am trying to wean her off of baba. She'll usually use the straw for me all day but at night even after using the straw to drink her milk she'll tilt that little head and smile at me and say "baba?". But it's great being able to go out and not have to pack a lunch bag. She will eat most regular foods now as long as I chop it up good. Her new trick for this week is learning to stand alone .She can only do it for a few seconds but she's getting there. There's proof in the new pictures.She is mighty proud of herself when she does this.It's a good thing too because she is getting a callous on her left arm where her wrist kind of is. She crawls on that since her hand isn't straight. I think I might have to make her a elbow pad or something to prevent it. She has also learned to roll a ball back and forth and said a few new words for Lori her therapist this week, "apple" and "more", although she has yet to reapeat them. When I ask her too she just laughs at me and shakes her head no.We are up to 8 teeth now with two others almost through the skin.Two are her premolars which has caused quite a bit of pain and drooling.That's about all that is new. We are going to Shrinner's this week , I'll update after that.

April 21, 2005

Alison completed a new task in therapy this week. She now knows how to drink from a straw. I didn't really believe it was a possibility at this age but apparently it is.She certainly has strength in those little hands. As I'm sitting here typing this she is playing on the floor. She always takes a pen and paper and pretends to write whenever she comes in the computer room.Well Rudy the cat also is in here alot. He has a shoe box he always sleeps in. So as she was sitting on the floor writting she deceided she wanted to pet him. So she reached out with one little finger and pulled all ten pounds of him, box and all over to her so she could pet him. When she was done , she slid his box back over where he came from. Rudy didn't seem to mind any of this he just sat in his box and let her slid him around the room.Actually he appears to enjoy the petting ,he frequently comes around her as does Mikey. Brad and Tommy on the other hand just run from her.

April 19, 2005

WEll we went to Danville today, they really didn't have too much to say. The ENT doctor took a look with the flexible bronchoscope and said that it still looked floppy but he thought it was improved. At the pulmunologist he said to start weaning her Pressure Support down on her vent at night. I mentioned to them about the orthopedist wanting her off the vent before he did her hand surgery but I thought it would be better to do it while she still had the trach in so they wouldn't have to put a tube in to give her the anesthesia.They both agreed with that and the ENT said that she is to have all her surgeries completed before that trach comes out.Not only to save her from being retubed but also because she has a little blind pouch in there that the tube could wind up in and then they would have trouble.So all in all it was a good visit even though we didn't get alot of news. She really likes playing with Dr. Perez, as soon as she sees him she gives him a big smile.She was a very good girl , she didn't sleep a wink on the way down like she usually does then we were tied up in the one office for about 45 minutes before we even got in for our appointment.All together we were gone for about 8 hours.She did sleep on the way home though. Must have been that grilled cheese and french fries she scarfed down at the good ole cafeteria. I think that was the first time she ever had french fries.She's eaten every other kind of potatoe though. After we came home I took her and Cody for his much promised walk across the street to the golf course and playground. She really likes to ride the swing.

April 15, 2005

Allie has been doing good . She has a black eye from a fall that is why she looks like she is wearing makeup in the new pictures.We went to get the oil change today and had to spend an hour in the store waiting so we shopped. I think I have created a monster with all the shoes. I showed her a pair and she liked them, when I went to put them back on the shelf she pitched a fit,she wanted those sandals. She likes to admire her shoes and show them to people. That is what she is doing in the picture......NO they are not the ones she was demanding , they are still on the shelf at Walmart. We are off to Danville on Tuesday hopefully for good news. She wants to wish her friend Cody a happy birthday . He is 11 tomorrow.

April 7,2005

Well Alison has been having some good days lately. She was sick the day of Rosie's christening but had a good time anyway playing with all the relatives. The next day (monday) however she really didn't feel well. She basically slept all day and night and only woke up to take a bottle . She barely ate anything.Tuesday was a little better then she was fine. She went out for a walk on wednesday since it was so nice out and then Dad took her again today.She enjoys that.Wednesday morning I woke to hear her whimpering. Then her vent started to alarm. I got up to find her tubings wrapped around her twice and she was stuck and couldn't move. I disconnected her and continued to empty out the tubings and turn the vent off. She was still whimpering a little. I turned her around (she was facing the wall) and then noticed her trach was completely out!! Her color was fine , she wasn't coughing or gagging. She was just mad that she was stuck. So I put it back in , but was thrilled to death that she didn't get dusky at all. Therefore that must mean that her trach isn't collapsing totally anymore. We are going to the doctors for her evaluation in two weeks so hopefully they will be able to take it out for good soon. She's off to NJ this weekend to go to cousin Wes' confirmation.That will be an early morning trip , she won't be happy getting up. At least she can grab two extra hours of sleep in the car. I wish I could say the same.Also she has a new trick this week. Dad taught her how to shake hands. If you put your hand out and say "nice to meet you" she'll laugh and shake your hand.Too bad David Letterman doesn't have stupid baby tricks!

April 2, 2005

Well hopefully we won't be under water tomorrow , Alison has to go to her cousin Rose's christening. It's pretty wet here right now though lots of flooding on the roads. Friday we went to do a little geneaology work at St. Mary's cemetary to get some fresh air since it was so nice out. She met a Rottie she liked there. Afterwards Allie had dinner with Grandma , Aunt Joanie and Uncle Gene at Wayne's diner. She had fun.

March 27, 2005

Alison had a wonderful Easter. She got alot of things from the Easter Bunny.She went to Grandma and Grandpa's for the day .She had a nice ham dinner,lots of treats and she got to visit with everyone. She also had a full day on saturday. She started off going for her photograph. The photographer couldn't believe how good she was smiling and cooperating.From the little video screen that I saw they look like they came out excellent. I don't know how I'm going to choose.From there we went to Carbondale to see Grandma S. We went to dinner at the Ben-Mar. She had herself some chicken franchise and she sat like a very good girl. After that we went to church which turned out to be a very long mass, two hours and fifteen minutes. She did surprisingly well with this too. I think it helped that there was alot of music which she kept dancing too.She immediately passed out in the car after that.

March 24, 2005

Not much new going on here.Just getting ready for the Easter Bunny. She wasn't too happy about trying on Easter dresses but what can you do.She has a busy weekend planned. Saturday she is going to have her picture taken then afterwards we are going to dinner with Grandma S. On Easter I have to work so Alison is going to Grandma and Granpa's with Dad.And that is about the most exciting thing going on her , not that I'm complaining.She's finally deceided to get a few more teeth too. The next two bottom ones are breaking the surface.For some reason she got the first six all at once then stopped for four months. Around the middle of April we are going to see the ENT and the Pulmunologist for them to discuss when her trach will come out. I don't think it will be right away but you never know.

March 12, 2005

Alison went to her first parade today, St.Patrick's day of course. She had a great time (after she came to life around 1pm) . She doesn't like mornings. She didn't quite know what to make of all the drunks but had fun waving to everyone in the parade and dancing to the bands. Someone in the parade gave her a little "Y man" figure (looks like it should be from the YMCA but it is from a laundry company)and she really likes him. She spent a few hours of the parade playing with a pediatrician that was standing next to us, she gave her a balloon that entertained her for a little while but I guess she didn't do too good of a job when she tied it to her stroller cause it let loose and flew away. Unfortunately I forgot the camera and had to stop and buy a disposable one so I don't have any pictures to post. Afterwards she went to the mall to see the Easter Bunny. She liked him , she wouldn't look at the girl taking the picture at first because she was too busy touching the bunny's face.But once she got her attention she smiled nice.The girl didn't snap the picture then for some reason but the one she got came out decent anyway. She had some ravioli for dinner with us and for some reason loves that but won't eat spagetti. She just stores the spagetti in her mouth and won't swallow it. That's the only thing I have found so far that she won't eat. We went to the gastrointestinal doctor on Monday and he was very impressed with her. He said she is the best VATER kid he has ever seen. He was expecting her to look bad and have alot of issues when he read the history. He said that since she isn't showing any signs of reflux we can wean her off the Zantac over the next two weeks. Then she will only be on a vitamin and nothing else.We don't have to go back to him for a year.

February 28, 2005

Hard to believe but Alison is a year old today.It seems like it was just yesterday that she was born. When I sit and think back of all she has gone through in one short year it is incredible. Her strength and willpower are unmatchable. She has shown us so much this past year while at the same time learning so much herself , alot of which they said she would never be able to do. She has proven many people wrong and at the same time taught others to have faith and trust in what they know to be right. It's been a heck of a ride but I wouldn't change a thing about this year. It has made her who she is, and that's one beautiful,intelligent,sweet,determined,stubborn little girl. I know I can speak for Tom too when I say that she is the best thing that has ever happened to us and we love her with all our hearts. Happy Birthday our precious angel.

February 22, 2005

Allie went to her cardiologist on monday and got some good news. We don't have to go back to him for 15 months!! He did an EKG after he examined her and said that she had an incomplete bundle branch block which was to be expected because they put a stitch thru it when they do the surgery but he was happy that it wasn't completely blocked. And she was in a regular rhythm.He sat and played with her for about 20 minutes while we were waiting for the EKG tech to show up . She kept taking off her shoes and giving them to him. Then her brought her a nice little pink stuffed bear that rattled as a present.
And even better news is she can stay off her vent all day now and just goes back on to sleep at night.No distress whatsoever so no more hauling that all over.Yippeee

February 15, 2005

We took Allie to Danville today to see the kidney doctor. He was impressed with how good she looked when he saw her because he had read her history and I guess was expecting her to look bad. He did an ultrasound of her kidney and everything is in good shape. All the internal structures of the kidney are good and it's growing well so far. Not that anyone suspects any different , just needed to check it out and make sure. He just wants to repeat it in about a year to make sure it is continuing to grow as she grows. It is significantly bigger than someone who has two but that is what they want to happen and is the norm.She was a very good girl ,layed on the table and let them do the ultrasound for a good half hour and that was after waiting in the exam room for an hour and a half!! Afterwards we went for a snack and then to the good old Walmart. Before coming home we went to Damon's and she ate some barbeque ribs and baked potatoe.I guess that smelled better to her because she wouldn't eat her own food ten minutes earlier. We had to lower her crib when we got home because yesterday she learned how to pull herself to a standing position on the crib rail. Kind of mean that after she worked so hard to accomplish that we go and put the mattress lower.But we had to do it otherwise she will be toppling out on top of my head while I'm sleeping. Once she figured out how to do it yesterday, she could get up in a split second . I don't know how it happened but somehow she became a toddler and she can be wicked when she wants something or doesn't want something as is now the case with diaper changing. She is sooooooo wirey.She spins and spins so you can't hold her down then two seconds later she is laughing. Sometimes she cries and laughs at the same time when she really is not sure what she wants.
Forgot to mention last week we went to the neurologist. Nothing really to report there. He thought she was doing well with her walking and reflexes, everything seems to be intact. He said that the tumor is at the border where you do or don't do the surgery for the teethered spinal cord. So they aren't recommending it unless she has any problems . Plus the fatty tumor that is there is very small. He wants to do another MRI in the summer just to check and make sure nothing has grown or changed. Now this coming week is the cardiologist and then a week or two later is the gastroenterologist. Then I think we are done for awhile except for the pulmonologist and the regular pediatrician. This six month period is wicked because that is all most of them want to see her but since she saw them all when she got out of the hospital they all fall in the same time frame.
Better go check on the little contortionist now, hopefully she is asleep. Two nights ago she deceided it would be fun to stay up all night and play and peak over the crib rail at me.

February 3, 2005

We went to Shrinner's yesterday , nothing really new just wants to wait til she is off the vent and trach before doing any hand surgery. They gave her a new splint to try to make her hand straighter yet. And she has some new exercises to do but that's about it.Monday we have to go to the neurologist but we don't expect anything new there either.Just for a check up really. She went to the bowling alley to see Dad's friends and then on the way home we stopped at Applebee's for something to eat. They were having karaoke night . The place was filled with drunk 20 year olds singing, but she had fun. She was enjoying all the music , dancing in her high chair and smiling at everyone.

January 31, 2005

First and formost Allie wants to wish Aunt Lorraine and Uncle Paul a happy anniversary today.
Allie spent sunday with Grandma S. and had a good time playing.Saturday we were shopping to stock up on clothes for next year and then she had a playmate stop over her crib (see photos).She is eating some table food now, she had potatoes and pudding on saturday at Ruby Tuesday's then yesterday she had spagetti but didn't really like it. It's kind of strange since she ate a cheese ravioli the other day and wanted more.
We're off to Shrinner's in Philly this week for a check up and to the neurologist next week. We only have to go to the plains office for that though so that makes things alot easier.She has been spending alot of time off her vent (4-5) hours straight at a time and doing fine with that. No distress what so ever.

January 25, 2005

Allie had a good week . We took her to Stroudsburg on monday to see her pulmonologist . He just kept shaking his head smiling and saying "she looks so good". She gained more weight she's now 17 pounds 14.4 ounces and 28 & 1/4 inches tall.He said she is in the 50th percentile now. When she first came home from the hospital she was only in the 5th percentile for weight and the 25th for height. He said her lungs were very clear and everything looked good. He wants us to continue to wean her off the respirator so that she is off, except for nighttime, by april when we go back.At that point he will talk to her ENT doctor and they will deceide a plan for her trach. He said that he can't promise that she will get rid of it this year .We are planning on it being between 2 and 3 years of age.
She went to see her Uncle Tom on friday.She liked him and was on his lap snuggling in no time.We had a nice visit although it was short. He had to return the next day but got snowed in and his plane got cancelled.
Allie also has a new cousin today Rosina Elisa,daughter of cousin Kim and Louie, who she can't wait to meet. Cousin Joanie was nice enough to send us some pictures tonight since she is the only other picture freak in the family. She also sent along a picture of Charlie and Lily. Allie really liked Lily for some reason (besides the fact that she is adorable) and kept waving everytime I put the picture of her on the screen.
I haven't updated this recently with her new accomplisments.She can wave bye-bye besides the shaking her head NO thing.She can also do YES now although that is alot less frequently used.She can also walk holding onto your hands about 15-20 feet at a clip.She just forgets sometimes and starts dancing and then falls. And she almost says DADA sometimes are clearer than others.She needs to have two binki's all the time now. One for her mouth and one for her hand in case she drops the first one she just slaps the next one in! She's becoming quite a character.

January 17, 2005

Not much going on here. Allie is going to go see a nephrologist in Feb. just to check her kidney because she never saw one and it wouldn't hurt to have it checked occassionally to make sure it's working ok since she only has the one.They also took her off her Reglan last time she went to the pediatrician and she seems to be doing fine with that.Developmentally she is still about the same except that she is making different noises now.And she can do it pretty loud too! She also has mastered shaking her head no when she doesn't want something. On a social note she went to Uncle George's sunday for a family gathering and had a good time. She found Aunt Kathy's potatoes quite tasty and ate about half of a twice baked one. She is looking forward to seeing Uncle Tom from Kansas who she has not met yet on friday. Hopefully there won't be any storms and he can drive down from Ithica to visit.

January 4, 2005

We went to the doctor today for her regular 9 month check up even though she is 10 months.The doctor is very pleased with her progress . She is growing great, quite a bit lately, she gained 5 ounces in the last week.Currently she is 16lbs 11ozs and 27 3/4 inches long.Everything went fine except her blood count was a little low when they did a toe stick to check it so she has to go and have a regular blood test done. They weren't sure if it was just a bad stick or if she might be a little anemic and need to go back on the vitamins with iron again. Either way it isn't any big deal he would like her hemaglobin to be 10 or greater and she is 9.5.He also took her off her Reglan since she seems to be alright with her GI tract.We are getting set up with a Gastroenterologist and and nephrologist just because she doesn't have one yet even though we have talked about it on other visits.That probably won't be for a month or so but I would like her to already know one just in case there was a problem they would already be familar with her case.That will be at Geisienger.The only other thing he did to her was give her a hepatitis vaccine like she doesn't get enough shots already. She kept waving at the doctor because she learned that and how to shake her head 'no' last week. So now she tries to shake her head and wave at the same time and once she gets going fast usually always winds up tipping over.

January 2, 2005

Allie made her first trip to NJ to visit Uncle Gene, Aunt Joanie , Aunt Kelly, Uncle Joe and Uncle Mick.Grandma S. stayed over the night before and we left from our house in the morning.She was a very good little girl although she only took a 20 minute nap all day.She had lots of fun playing with everyone and actually fell asleep with her coat and hat on in Aunt Joanie's arms. Something she rarely will do.She likes to be sprawled out when she sleeps not held.She slept all the way home til we got to Carbondale then we stopped in the Donut shop and she was eyeing up a boston creme.Not sure what she actually thinks of it she had her poker face on when she ate some.

December 26, 2004

Allie had a great Christmas got way too many presents but she had a blast opening them and eating the paper. She went to Grandma S.'s house and tomarrow Grandma and Grandpa Green are coming over.Hopefully she will be in as good of a mood as she was today because she hasn't stopped dancing all day.She wants to type everyone a message right now.
op;....... gbggvc vf,km;ionv

December 18, 2004

Not much going on , just finishing up christmas shopping. Allie was off her vent for about 2 1/2 hours straight tonight in the store and did fine.She actually slept for about half of it.So now at 3:30 am she's up banging the plastic hook from her toy along the slats of her crib.It's amazing how tired she is in the living room but the minute she gets in her crib with all her little friends she becomes the life of the party.Hope she's in a good mood tomorrow for the photo's for the christmas card.

December 7, 2004

Allie went to Danville today to see her ENT doctor. Not really any news to report,he said her trachea was still very floppy but we expected that. He was very pleased with how she looked and how she was growing. He was also very pleased to hear that she had her first cold and did ok with it. He said that most of these kids wind up in the hospital when they get colds.She was a very good girl she let him stick the scope down her trach twice and she didn't even squirm or cry.Of course she had to play with all of the office staff before she left then onto the cafeteria for more fun.
On the way home for a treat we took her to Nay Aug park in Scranton to see the Christmas Light display. She got wide eyed and started bouncing around. When exiting the park she saw Santa.It's now 4am and she finally went to sleep!

December 1, 2004

Allie had her appointment at Shrinner's today. Things went well .Her doctor was very happy with her progress. Her hand was at a 90 degree angle last time and today it was at a 45 degree angle. They made her a new splint. The one resident wanted to take some pictures of her hand.As soon as she saw the camera she dropped her binki and put on a big smile.So he took a picture of her before he did her hand.I guess I have her trained well.
They are not going to do her hand surgery for awhile. He wants her off the vent first. He said that the research shows that it doesn't matter if you do it at 3 months or 2 years .It doesn't make a bit of difference as long as you do it before age 3.
After Shrinner's we stopped by CHOP to say hello to some of Allie's old nurses.They couldn't believe how good she looked.She was falling asleep when we got there but came around and put on a show for them once inside. Everyone who came over to see her got a big smile .She danced for a few and got her picture taken with them.She wasn't shy with any of them and she let them hold her without a flinch.
In a few days we're off to Danville to see her ENT doctor.
Oh she's eating the little cerel crackers now.She likes to try to get away with shoving the whole thing in her mouth at once though . I guess she figures since she has five teeth now she can take care of it once it's inside.

November 20, 2004

Not much going on here.We took Allie to see Santa today. She liked him.She was trying to pull his beard.She has three teeth now with the fourth barely poking thru so of course she's chewing on everything, edible or not.Although I can't say I've found a single food yet that she won't eat.Although she doesn't look it she's a very good eater. The week after thanksgiving we have to head back to Shrinner's and also to Danville to see the ENT doctor.I think the hand doctor at Shrinner's will be quite happy with her progress.Between the splint and her exercise her hand has really loosened up.

November 10, 2004

Allie had a big day with her therapist today. She has both occupational therapy and her special needs instructor on wednesdays. Lori was teaching her how to move her lips to make sounds so she has been "practicing " all night. She is also standing the last few days with just someone holding her hands or holding on a chair or something. Her occupational therapist was very pleased with her form!I'm not so sure I want her up and running yet.I have a feeling the cats won't know what hit them.

November 8, 2004

Allie is doing better. She still has a cough but is eating and drinking normal.When I called from work to check on her tonight she was singing and dancing so she couldn't of felt too bad. She was sitting on my lap playing tonight and Mike walked by .She grabbed the poor things tail.He's so old and fragile now (almost 17) I'm lucky she didn't break him.

November 6, 2004

Allie is having a little bit of trouble this weekend. We were suppose to meet Aunt Joanie and Kelly at the outlets for some shopping today but Allie wasn't feeling too good. She only ate her cerel yesterday morning and wouldn't take her bottle. She totally refused her second meal of the day and was breathing fast.She sounds congested but when you listen to her lungs they are clear. It seems to be all upper airway congestion. Around 10 pm last night she finally took a bottle of pedilyte.When I came home from work we changed her trach just in case that was causing the issue, but it was pretty clean and didn't seem to change anything.After that though, she started her song and dance routine and was pretty happy.Then she ate an entire jar of apples. So I thought maybe she was doing better. She was breathing pretty rapid during the night about 70 breaths per minute. She's usually around 40. When she woke up today she seemed to be a little better. She took some more pedialyte but wouldn't eat. We played on the floor awhile listening to her music , she was dancing around and seemed to be getting better so I didn't call the doctor. Of course as the night wore on she was breathing rapid again so I'll be calling tomorrow.She is staying hydrated pretty good today though, I got her to take 21 ounces which is actually more than she usually takes when she is well.No milk though she won't take any of that. She ate 2 & 1/2 jars of food today too but she continues to cough and rub her face .And she is still breathing heavy. The poor thing still tries to smile thru it all but you can tell that something isn't right with her.

October 31, 2004

Allie had a big day today. She went trick or treating all afternoon. She started off at Grandma and Grandpa G.'s then headed up to Carbondale to Grandma S's. From there she went to Aunt Theresa's and met all the cousins. After that she had to make her rounds at the hospital and then finally headed home around 10pm.Of course she slept on the way and once home, she deceided it was time to play with all her new toys she got from her grandparents and aunt.After her bath she hit the crib early tonight and was asleep by 2am.

October 26 2004

Alison went to see her pulmonologist yesterday and he said she was doing very well and that she could start to wean off her respirator.He wants to do it slowly over a long period of time , like 6 months or so because of the winter coming . She is off for an hour three times a day now and is doing fine with that. She has grown some more and is 13lbs 11ozs and 26 & 1/4 inches.Overall he was extremely pleased with her progress and seemed to be a little shocked at how well she is doing.She is spending alot of time lately dancing. She has learned how to "stand" when you are holding her and likes to bounce up and down.

October 17, 2004

Not much going on except we are taking Allie to her respiratory doctor next week and he said he would start to wean her off of the respirator then. We take her off sometimes for up to a half hour or fourty five minutes at a time and she does fine so I'm sure she will be able to be weaned down. Then she will just have the trach left which she will have to have for a few years. But that will be much easier than the vent. She will probably still have to go on the vent at night for the humidity but at least she will be able to move around during the day. She's constantly rolling over and moving now and she keeps getting tangled in the tubings.Trach changes are much easier now , not sure if it's the lubricant or the fact that we finally have new trachs to put in as opposed to the reused/cleaned ones.The only other news is that besides the two front lower teeth the top left one has broken thru also.

October 9, 2004

Allie had a big day today she went to the Pumpkin patch with Mommy, Daddy and Grandma S. She was kind of tired and not really in the mood for smiling but seemed to have a good time anyway. She sat on the pumpkins for a few pictures (wouldn't smile for any of them) and then she went to the petting zoo where she saw some barnyard animals. She was petting one goat but she just looked at most of them . After that she went to dinner and sat in a high chair for the first time.She was a very good little girl at the restaurant and was playing with the little girl and her mother at the next table.She tried some mashed potatoes but wasn't too thrilled with them.After dinner she went to Mommy's work place for a visit.There she met alot of new and some old friends.She showed all of them her new boots. Check them out in her pumpkin picture!

October 1, 2004

Things went well at Shrinners today they are very nice .Her doctor was great, he sat and explained everything to us and gave us time to ask any questions we had about anything. Basically they are not going to do anything for awhile. Until she is as least a year or two. He said he can straighten her left hand out and pull a finger over to make a thumb. On the right the reconnection of the ligaments for the thumb depends on if she has a joint at the base of her thumb or not. They can't tell yet she has to grow some first so the bones stiffen and they can see them on xray. If she has a base he can reconnect. He kind of felt that she did by feeling it but can't say for sure.If she doesn't have a base they will remove the thumb that is there and make one out of her index finger.He said they see alot of VACTERL kids there and she will definately have use of that hand. They also made her a new splint in about 20 minutes. As for the lengthening of the bone that requires an fixator to be placed on which is a metal bar that goes into the bone and then there are screws that they keep lengthening it with.It will be left in place for a long time and readjusted as she grows .This is a pretty painful thing. They won't do it until she is a teenager and he said alot of kids by that time are so used to working with the shorter arm that they just choose not to have it done. So that is way off if we do it at all. But for now as long as he can straighten her hand so she can get more use out of it and develop more on target that will be great.We just have to do some exercises and put her splint on while she sleeps to stretch all the skin and ligaments out and go back for a visit in two months.She did good today except that she didn't appreciate getting up at 6am. She usually doesn't roll out of bed til 12:30 or 1pm.She did seem to like her doctor though she kept reaching out for his hand and holding it.

September 30, 2004

Well we are off to Shrinner's tomorrow. Hopefully we will get some insight there as to what can or can't be done with Allie's arms and hands. She is getting quiet clever with them though. Her special needs instructor was here yesterday and had a wheel of bells she was spinning for her. When she turned to talk to Tom , Allie took her left hand and spun it . She was very impressed she said it usually takes kids awhile to catch on and spin it themselves , plus she used the bad hand to do it. FINALLY her bottom tooth broke thru it's been months of on and off drooling and pulling at her mouth. She started on meats today also and seemed to like the chicken.She was very fond of sucking on a little chocolate bar also surprise ,surprise, there's a shock considering how much candy the two of us eat.That's about all that is new.I'll update when we get back. Oh only one other thing when she turns over now she has learned how to get her arm out from under her and get up on her arms.

September 24, 2004

Allie had her doctors appointment today for her vacinations. She really didn't gain anything just 2 ounces but she grew 3/4 of an inch.So now she is in the 50th percentile for height and the 5th percentile for weight.Everything else was fine she had her four shots and just did a little cry with each .Once they are in she is fine and doesn't seem to care about them afterwards.Her occupational therapist came to meet her today. He will see her after the special needs instructor every wednesday now.She has quite the social calendar.

September 20, 2004

We went to Geisienger today. The doctor looked at her site and deceided to put some lubrication on the trach and see if it would go in easier.It did . He met some resistance but it looked like it went in much easier than when we did it. He gave us a presciption for the lubricant and wants us to try it for a few times and let him know if it is easier or not. He said it could be because we are using old trachs.We haven't gotten the new ones from the company yet.He took a look in her airway before he started and he said it was still pretty floppy.
Last night she went to her first birthday party, her cousin Richard's. She got to play with her cousins and have fun.

September 17, 2004

Allie is going to Geisenger in Danville on monday. Her doctor is going to change the trach out himself to see if he can figure out what the problem is.Afterwards if he can't he might have to do a bronchoscopy.He didn't want to rush right into the bronch. He said that sometimes they form granulomas. If so, that would need to be removed. I'm not sure if that would be thru the bronch or not. Afterwards we got some very good news. Allie has been accepted to Shrinner's Hospital for an evaluation of her hands. We even got accepted to the surgeon we picked. The lady told us that he is very booked and that people come from all over the world to have him do their surgery.His specialty is suppose to be upper extremity deformaties.So hopefully he will be as good as he sounds.We are not even sure at this point if there is any surgery available to help her but we will find out soon. We are going in the beginning of october.Hopefully he will be able to get her better function of her hands. If not then she will just have to work with what she has like she does now. If she wants something bad enough she finds a way to get it. If she can't figure out how to pick it up with her hands she just pulls it to her with her feet!

September 16, 2004

Well apparently someone likes apples because she ate the entire jar last night.First time she tried them.All of a sudden she is eating everything she can get her hands on. She's uped her bottle to six ounces every four hours and she eats 1/3 to 1/2 of a jar a food four times a day. We have to get in touch with her ENT doctor because she is having a little problem with her trach. We are having more and more trouble each week when we change it. It is hard to get in . I don't know if she has formed some scar tissue or it's swollen or what so we will be talking to him tomorrow.Nothing else going on.Still sleeping til noon everyday ...........yipeeeee.
She is also VERY fond of a lady bug book my friend Mary Lou from work gave her. She plays with it everynight before bed and every morning when she gets up.I think I even hear it crinkling in my sleep.

September 6, 2004

Not alot new going on. Allie's been eating really well. She started on fruits now and is doing well with them so far.She's been finishing all her food most days and her bottle and sometimes still looking for more.She has a new trick since I went back to work. She gets up around 1am when I get home and then she wants me to play with her.She doesn't go back to bed til 5am!!!If I ignore her she just plays by herself anyway.She's good at amusing herself which was something I worried about since she always had nurses around but she will play by herself for as long as you leave her as long as it's not feeding time.Actually she's been playing quite a bit the last few days. Other than her 8 or 9 hours she sleeps at night she hasn't been sleeping much more. She was up all day yesterday except for a short 45minute to an hour nap, I thought she would be tired today and make up for it but she only napped a half hour.Still no teeth. Those two bottom ones have been sitting just below the surface for about a month and a half now.They just don't seem to want to come all the way thru. She is definately less cranky with them this week though.We are still waiting on early intervention.The therapist should be starting this week.Between the nurse and us we have been working with her though.She is doing good with her belly time and rolls over to sleep on her stomach all the time now.One good thing about the vent she can sleep on any side she wants and we don't have to worry about it.She's also using her left hand much more.We make her use it to grab onto toys and things and it's becomig more functionable.That's about it for this week . Later this month she has to go to the pediatrician so we'll see if she's eating enough when she gets the weigh in.

August 26,2004

Allie had her evaluation from Early Intervention today to start her physical and occupational therapy. The lady asked me is she was on steroids. When I said no why ,she said because her cheeks are so chubby I thought she was on steroids!!!! She did well, the therapist was impressed at how well she tracked things with her eyes.Told you she's always been noisey and afraid she was going to miss something. She also said that her being so social would help her tremendously.I don't think she was expecting a baby so alert and inquisitive.
She's doing wonderful with her feedings . She takes her entire bottle almost everytime now plus she takes about 1/3 to 1/2 a jar of food. She likes her vegtables but doesn't really care for the cereal. She'll eat the oatmeal but pitches a fit if you try to give her rice. For someone who they said would never eat well they should see her now. She'll take your head off if you don't get "ba ba" fast enough.

August 20, 2004

I talked to Allie's pulmonologist yesterday and he said that since the trach doesn't quite cover the whole weak spot he would like to let her grow a little before he starts to wean her down. So we are scheduled to see him two months from now and he said he would start then. Nothing else new except she started on sweet peas and she likes them too. I guess it's just cerel she hates. She's also come to enjoy her walks to the golf course with Cody at night. Don't know what is going to happen with that when I return to work on monday. After all she is my daughter. She doesn't get up til 10 or 11 anymore then she takes her bottle and cerel and goes back to sleep til 2!!!

August 17, 2004

Allie is doing well at home. She has been taking her entire bottle almost every time and now today she started eating carrots besides her cerel. She seems to like them. Now we'll see if this whole "carrot's give you good eyesite " theory is true. Because she doesn't stand a chance of having good vision with us two as parents.She's also teething again.Although the first two haven't actually come in you can see them right on the surface for a month or so now. But she has been drooling constantly and is attempting to chew off her thumb. She has definately found a friend in Cody.He constantly kisses her regardless if she wants it or not.Mike seems to be her favorite cat, I think it's because he always comes and curls up on her blanket with her when she is on the floor. Although she does like to reach out and pet Rudy too. Brad is still afraid of her , he will only approach when she is sleeping and take a quick sniff before running away. Tommy just lays low and doesn't go near her. I took her on our first solo trip yesterday (shopping of course) and she did wonderful if it wasn't for her battery we would have stayed out a few more hours.She seemed to enjoy it , I'm sure I'll regret that later.

August 13, 2004

Lot's of good news this week. Monday we went to the cardiologist and everything was very good . He couldn't even hear a murmur anymore. He did an echocardiogram and things looked good there.Allie helped him with the wires.We don't have to go back to him for six months .He would have said a year but since she has the trach and vent he said better check in six months just to be sure.After that we left for Geiseinger.Tuesday we saw the ENT doc.He took a quick look down her trach and then the fellow did it and then the resident ect. ect. She was a good girl though nothing more than a little coughing.He said she is still floppy he could see it. He did give her a pediatric trach instead of the neonatal so it would be a little longer.He just wants us to watch her for a week or so and if she is still having blue spells he wants us to come back and they will have to make her a custom length trach. So far no blue spells though.The next morning (8am yuk!) we went to the neurologist. The MRI did show a small fatty tumor at the base of her spine.This is common with her disorder and is part of what they were looking for. He told us that it would be better to have the surgery done to free up the spinal cord before she got any symptoms. He was going to speak to the neuro surgeon about it. By time we got home yesterday he was calling us. He said he spoke to the surgeon and the radiologist and they all met and went over the MRI together and they think that the cord is actually not hung up at all. The place of the tumor is at the very base and the neurosurgeon said it wouldn't stretch there anyway. The reason the cords have to be freed is because as the child grows the spinal cord can't stretch if it is attached to the side and that is what causes the problem . He said that where her's is is at the end so there isn't any stretching to be done and it is only a pinpoint area so he doesn't see any need for surgery. So we don't have to go back to him for six months either.We still have to deal with her hands . My next mission now is trying to get her into Shrinner's Hospital. A friend asked a hand surgeon here to recommend someone and he recommended a man from Shrinner's in Philly. So I'll try that next.From what I've read on the internet about him he has done alot of things for kids with deformed upper limbs. Published a bunch of articles and chapters in books ect. So we'll see what I can get done there. We are also back on cerel this week since she has her new trach.The only problem is she insists on doing it herself. She's very independent which I guess is a good thing but we all wear alot of food.Although I have to say I'm very impressed how she gets the spoon right in her mouth she just spits the food right back out.She's also been getting in some belly time and is almost able to roll over .She almost had it last night but unfortunately by time she got there she was up against the playpen and couldn't get any further.She was quite angry about that.It's kind of hard for her to go on her belly with the trach because the tubing kind of digs into her.But she has the determination so she'll get there. She is developing quite the temper.I won't even get into how she flung the bowl of cerel out of my hand and all over her crib yesterday because she didn't want any!!!!

August 6, 2004

Allie went to her regular pediatrician today and got her shots (4 of them,yikes!) . She was a good girl though not cranky tonight or anything.I guess she's used to things like that. They arranged for her to go back to Geisienger on the 11th again to see the ENT doctor for her new trach and then on the 12th she'll see the neurologist.I guess that's when we will find out about the MRI.She's sleeping now wiped out from her day .After her shots she went for Chinese food and to Walmart so she's beat now.I'm sure she will magically get a second wind around midnight!

August 5, 2004

Well we got some good news for a change.Although the first day of our journey was virtually a waste of time the second and third days were much better. The orthopedist who was a hand specialist said he wouldn't do anything with her arms.He said he only did a few surgeries like that and would recommend we have someone with more experience do it. The neurosurgeon basically told us we shouldn't be there at his office til after she had a positive MRI and exam by a neurologist.He did however order the MRI and we'll go from there.The second day we saw her new pulmonologist who was excellent.He really sat and listened to her history , asked questions and took notes.He also mentioned something to me on the third day that I had said to him so I know he was actually lisening.He agreed that she must have something going on to be turning blue again and he wanted to do a bronch to see what was going on. When he found out we were scheduled for the MRI today he went out of his way to rearrange his schedule so he could do the bronch while she was still under anesthesia from the MRI and didn't have to go under again. So today she had her MRI (we won't get results for a few days) and then he did the bronch. The news there is her trach is too small about an inch and a half shorter than it should be although the width is ok. So basically it isn't stenting the weak spot now hence the turning blue.So now she has to see an ENT doctor to get a new(probably custom sized ) trach. That has to be arranged , hopefully soon since I had to bag her coming over rt.80 tonight.She had alot of plugs since we had trouble with her respirator with the humidifier while we were there and she wasn't being humidified much.Anyway the good news is he checked her trach at a PEEP of 20 and then without any PEEP. It wasn't much difference.It collapsed only slightly without any PEEP.Therefore he said that when she gets her new trach he doesn't see why he can't get her off the respirator since the trach will stent it open.I'm assuming that she will still have to be on it at night just for the humidity but that is certainly better than lugging that vent around 24 hours a day because she is getting very active and does not like to stay in one place. She was however happy to be home tonight. She likes to hold her hands together and it seems to relax her.As soon as I put her in her crib when we got home she started rubbing her hands together and smiling at her bears and bunnies on her bumper pads .She loves them!!!

August 2, 2004

Well we are off to Geisienger today for our follow up appointments with everyone.I think it will take us two days just to load all the equipment in the car!She's still having tons of secretions so hopefully a bigger trach will take care of that.

July 28, 2004

I don't know if anyone noticed by Allie's new pictures but she doesn't have her feeding tube anymore.When she was sick a few days ago she vomited it up and we didn't have to put it back .She usually finishes her whole bottle each time now.It takes her about an hour but she takes it all.Time will tell, but at least she gets a break for now.She definately has outgrown this trach we can hear her cry now. It's kind of bittersweet , as much as I don't want to hear her crying it's nice to finally be able to hear her voice after five months!

Tuesday, July 27, 2004 6:38 PM CDT

Allie is doing better today. We took her to the doctor today just to make sure she doesn't have an infection although the secretions were much less today. He said he didn't hear any indications of pneumonia in her chest and he does think it is related to her trach being too small now. We have our appointment for next week so we will continue that unless she has more problems and if she does we will go sooner.She has learned to play with her first ball.Must be from watching all that baseball.For some reason she is obsessed with baseball when it's on TV she won't take her eyes off of it.So now she likes to hold onto her ball and have you throw it so she can kick it.

July 26,2004

Allie had a big day out yesterday .She went to Aunt Joanie and Uncle Gene's 40th anniversary party. She met alot of new people and had fun. She wasn't quite herself yesterday and I thought maybe it was all the new surroundings but she seems off today. Once last night and once today she started to do her little blue spells again.We had to bag her both times. Both times were related to bearing down but she also has a lot more mucus and is coughing .I am not sure if she has an infection or if she just has all the mucus because of the spell ,which happens sometimes. I think maybe it's time for a bigger trach.This is the same size she has had since she was trached and that was over two months ago. Perhaps it's two small now and the spot is able to collapse because it is no longer stinting it.

July 23,2004

Well Allie had a big day today she went out shopping at the mall and went to the Picture People to have her photo taken. Afterwards she went to Old County Buffet for dinner.She did very well and is now worn out from her big adventure. She's starting to get the hang of cerel somedays .Other days she just spits it at me!

Wednesday, July 21, 2004 11:59 AM CDT

Allie just went on her first outing to her ped's office. He set up her other appointments for follow ups at Geisenger.They are coordinating everything for Aug 3rd and 4th , her MRI and doctors visits with neurosurgery, orthopedics, and pulmonary. She did very well out today and even had blood work drawn with nothing but a little flicker.We tried her on cerel today but she hates it.Makes all sorts of faces.I guess we'll have to try another flavor!!! Perhaps something sweet.

July 19,2004

Great news today, Allie came home tonight.She liked her car ride, was looking out the window til she fell asleep.She's adjusting very well has been sleeping for the past 3 hours .She has met Cody and the cats and is totally unaffected by any of them although Brad is afraid of her ventilator. I put Mike's tail in her hand and she got a big kick out of that.Cody is being very good , he's not interacting too much with her right now but he isn't bothering her or anything and is just laying at my feet when I hold her.

July 17,2004

There might be a little glitch in monday's plan for home. Her vent broke today and they had to put her on the spare one she has for home.I'm not sure if they will be able to fix the other one or get a different one by monday. I don't think they will send her home if there isn't a spare ventilator.She only vomited once today and that was when they had to put her back on the vent that didn't work well for her while they called the company for this other one.So hopefully she is done with that. She is starting to gain back the weight she lost (about 1/2 pound total) since she has been at CMC. Other than that she is doing well.She's starting to eat better and is tolerating the little bit of cerel they started putting in her bottle yesterday.

July 16,2004

Allie played with her nurses all day and was exhausted by time we went to see her.She was entertaining them today. She's breathing much better although she did vomit once again tonight.Not sure what that's about. The doctor deceided to let her try some cerel around midnight tonight so I'm not sure how that is going. As of 1am she was sleeping and holding it down ok.She's starting to get her teeth too. The two little bottom center ones are breaking thru.

July 15,2004

Well Allie got her home vent today and the nurse said as soon as they put her on it her breathing improved immediately.She was back to being her smiley self.The plan is for her to come home on monday.She is becoming quite interactive.She was playing with Tom's hair today , she kept stroking the back of his head and she gave me my first hug when I picked her up tonight.Shortly afterwards she also gave me her first I want to be picked back up cry!

July 13,2004

Well Allie is still struggling a little with her vent. Her home one is suppose to come tomorrow so hopefully she will do better on that. She is still vomiting too but I'm sure once she can breathe better that will stop. They did a chest xray today just to make sure but that was all clear. She gagged her feeding tube out so they gave her a chance without it .I'm sure she probably didn't do well though because it's hard to eat when you can't breathe.She only took 61cc for me at 6pm. Her nurses put on a sing along video for her tonight and she couldn't take her eyes off of it.She was zonning us out for the TV already!

July 10, 2004

Well Allie is adjusting to her new digs. She is having some trouble breathing with the different machine.They don't have the same kind of CPAP valve and had to put her on the respirator and do CPAP thru there and it's just not the same.She is working pretty hard to breathe most of the time. They are having the company that is going to do her home stuff come and put her on what she will be on at home so she can adjust to that.They were going to come on Monday but since she is having trouble the nurse is going to call them in the morning and see if they can come sunday.Because she has to work so hard to breathe she isn't eating as well.She has been vomiting a few times today so then she is still hungry and is generaly uncomfortable.She barely slept at all today I think it is too quite there for her , she's used to alot of noise.

July 8,2004

Allie finally made it back to CMC tonight. We got here around midnight and she settled into her new digs without too much trouble.They had to do a little rearranging of equipment but once that was done she was fine. They had to get her a crib also, I don't think they were expecting such a big baby.She couldn't even fit lenght wise on the table they planned to put her on.She did good on the ambulance ride here.Slept for the first hour and played with the nurse and mom for the second.

July 6, 2004

Allie might get moved closer to home tomorrow. They called us today and said they were moving her but then that fell thru so maybe tomorrow. Hopefully she will be in a better mood, she wasn't very happy today , I think she is starting to teethe.

July 5, 2004

Well just three days after the doctors were trying to talk us into a gastro tube Allie took her entire bottle of 150cc!!! Then she followed it up with the next feed of 110cc. So now she just has to do that a little more consistantly which she seems to get better at every day. No other news for today . Tomorrow when everyone is back from their holiday we are going to get moving with this transfer or coming home.Alot of her nurses think she could just go home at this point but we need to get the equipment and nurses in place for home.

July 3, 2004

Another good day and a new record.Despite being tired and trying to sleep thru her midnight feed she took 118cc.She had a staring contest with her roommate who came over to visit her.She is 2 days older than Allie and only weighs 3pounds.They both just sat there staring at each other.

July 2, 2004

Allie had a good day today , lots of playing .She has a big fan club and everyone stops to see her and play with her. I hope they intend to come to the house and do the same when she comes home because now she expects to be entertained. I told them we were refusing the gastrotube .They weren't too pleased but they'll get over it.I also told them I want her transfered within the week so we'll see.She did really well when I fed her this evening .She was doing 50-60cc last night and all day. For her 4pm feeding, after I told them I didn't want the tube, she did 96cc and then at 8pm she did 115cc!!! I was hoping she finished the whole bottle just to prove them wrong.But this is the most she ever did so I'm happy with that.

July 1, 2004

Her GI series was done and was ok , just showed some gastric reflux which we knew she had.No other abnormalities.They are still trying to convince me to have the gastro tube done but we have definately deceided against it.She doesn't need another surgery just because she might possibly get behind developmentally.That is their reasoning .We think that she can just catch up like she will with everything else .Why take the risk of surgery plus have another source of infection.And if she pulls the feeding tube out we can just put it back in where we have to take her to the doctor everytime she pulls the gastro tube out.She's really a good baby.Doesn't give you a hard time with her trach changes at all.She just lays there and takes her pacifier.What a trooper!

June 30,2004

She's averaging 40 -50 per feed now.Not as good as she had been but not as bad as she was for those few days either.When I got there today she was asleep in her chair with her feeding tube in her hand.Apparently this is the second time she took it out today! I think she just hooks it with her finger when she is trying to rub her eyes and put her hand in her mouth.They told me that they want to do a GI series to see if there's a reason she isn't eating as good anymore. I don't know if she heard them or what but for her 8 pm feeding she took 106cc!!! Her best ever.I'm so proud of her.I think that's pretty good for only eating for two weeks.

June 29,2004

I spoke with CMC today and they are willing to take her with the feeding tube she has now and even send her home with it if need be.If for some reason she needs a gastrotube later they can send her out for it.She had the doctor call CHOP and they told her that they aren't transfering her because she might need a gastrotube.I told them here that we didn't want a tube .I am trying to get in touch with her case manager but she is not here today.We need to get her going and apparently if I don't keep pushing she will still be here for her first birthday.She does very good with her trach ties , she was an absolute angel for them tonight .Doesn't even cry as long as she has her paci.Between that and the bath it wears her out.She had her feeding afterwards and before I could even hook the rest of the tube feeding up she was out like a light.

June 28,2004

Had some vomiting today.Now they increased her feeds again up to 150 cc every 4 hours.The resident stopped by and told me that they are still trying to deceide about the gastro tube and that is why she isn't being transfered.We don't want her to have this .I asked him about the MRI and he said that they weren't going to do it now because she doesn't need it til she is 6 months.

June 27,2004

The fortification is gone and she is eating a little better.Between 50-80cc.Not sure what she did all day but she had bags under her eyes when we got there.As soon as I held her she went right to sleep and slept for a few hours. She really puts alot of weight on her legs now when she tries to 'stand'.

June 26,2004

Still not eating as well as she was although she is eating alittle better .In the 50's.They really couldn't give Tom a good reason why she is on the fortification so the resident said he will discuss it with the team tomorrow and call if they had a problem with discontinuing it.

June 25, 2004

Still not eating well, very gasey and uncomfortable.Tom told them to tell the doctor in the morning that we want her off the fortification.Her trach ties were different today and when Tom asked they said that they knew we had concerns that they were too tight and the nurses today on day shift all agreed that they were too tight so they changed them! Unfortunately the poor kid had to suffer all night.

June 24, 2004

She played all morning with her nurse today ,had her music going .But she isn't eating much down to the 20's every feeding.They incresed her feedings too to 125cc every 4 hours.Don't know how she is suppose to reach a goal when they keep increasing it.We did a trach change tonight.It turned into a fiasco.Apparently they don't do many of these at night so everyone came over to watch.Kind of nerve racking when it's your first one and you have about nine people watching.The one nurse kept insisting it wasn't tight enough and making it tighter and tighter.At that point Allie started crying .She made it 7 cm tighter than everyone else in the last two weeks had it.We kept telling her it was too tight but she wouldn't listen.It was cutting into Allie's neck .She was gagging and you could hear everytime you swallowed.It took her awhile afterwards to settle down .She was having retractions and her sats were down to 92% .She is usually 100%.You could see it was uncomfortable for her but they kept insisting it had to be that tight.Once it stretched out a little she was able to sleep a bit.

June 23, 2004

We are back to her being gasey and y now that she is on the fortification again.Same old song but no one listens.She isn't taking as much to eat either , I'm sure it's because she is so bloated .I wouldn't want to eat either. Nothing was pleasing her til she left out a huge burp then she started smiling and settled right down.

June 22, 2004

They are fortifing the milk again for unknown reasons.They are starting to arrange her nurses for home so the end is in sight.Hooray!!!We changed her trach ties tonight and then afterwards Dad learned how to suction her.She took 85 and 90 cc tonight.

June 21, 2004

The speech therapist came to watch her eat today.She took 70cc and wasn't done but the therapist wanted to stop her there. She said that she did better than anyone ever did there.She was very pleased with how fast she was catching on.She said that at a minimum it usually takes the kids two weeks to get this far and she's only been doing it 6 days.They are going to call CMC and see if they will take her there if she only takes 1/2 her feeds orally and the rest thru the tube.The insurance company wants her back in network so they are looking to move her. We wouldn't mind being closer to home either.She was having alot of fun again today she loves to lay on your lap and hang off while you bounce her. She also gets a huge kick out of it when you trace her lips for some reason.

June 20,2004

I changed her trach ties after her bath tonight , that went well.Dad got to feed her for the first time tonight .She took 53cc for him and at least 35 of it was in the first 3 minutes .She really chugs in the beginning then wears herself out.

June 18, 2004

Another good day, very happy baby.She's up to 53cc on her feedings.The resident told me tonight that there is a small questionable area on her ultrasound of her back that may be a tethered cord.They need to do an MRI to confirm it.He said if it was they wouldn't do the surgery til she was about 1 year old.Now the nurse practicioner told us if she had a tethered cord they wouldn't let her out of the hospital til it was fixed...........so who do we believe????????

June 17,2004

She had a milk scan today.No results yet. They ordered an ultrasound of her back for tomorrow instead of the MRI.She's still doing better with each feeding although sometimes if she is sleeping they just put it thru her tube.She was very happy today,played with Grandma.They did her trach change tonight and I watched , next time is my turn.The whole trach comes out and gets changed.

June 16, 2004

She started her regular feedings today.The swallow study showed a little pooling in the back of her throat but they said it wasn't anything to worry about.She is getting progressively better with each feed.She took 10cc for me at 8pm then 18 at midnight.She's only allowed to feed for 15 minutes now then the rest goes thru her feeding tube.I was able to change her trach dressing tonight .The site looks pretty good.Grandma S. came back to Philly with me tonight so she got to hold her for awhile.I talked to the resident about the MRI she was suppose to have of her back and he said he would bring it up in rounds tomorrow.They still have to make sure she doesn't have a tethered spinal cord.

June 15,2004

Great day for Allie,she got to take her first bottle!!!!The speech therapist came and checked her swallowing and then I got to feed her. She only took 5cc but they said that was great. She was given a restrictive bottle so she could only get so much. They didn't let her do too much because they want to do a swallow study tomorrow to make sure there isn't any problems there.

June 14, 2004

It's great now because we can just take her out whenever we want to we don't have to wait for anyone to help us. Although usually when we are there she is out the whole time anyway.She gets to sit in her chair when we aren't there and look around at all the action.It keeps her entertained.They took her off the captopril now since her last echocardiogram was good.

June 12, 2004

She doesn't want to lay down now. Everytime you lay her down she cries and as soon as you sit her back up she stops.She's getting spoiled.Her pressure support is off on her vent now and she is just on Peep.Her weight is up to 11 lbs and 5 ozs.

June 11, 2004

She is doing good. She got to sit out in her chair today which they haven't let her do in awhile because they were afraid she would dislodge the endotube.She then slept most of the day and was up from 7pm til 3am.

June 10,2004

Allie had her initial trach change today , the surgeon was please with the site and the change went well. She was very good , didn't give them a hard time.She got held afterwards and played for awhile.

June 9 ,2004

They are decreasing her pressure support on her ventilator now.They went from 8 to 6 yesterday and now today are down to 4.Having a decent day. No issues.

June 8,2004

Speech therapy saw her today but they really can't do anything until she has her inital trach change done so they will come back after that.She slept for a long time tonight they must have worn her out today.

June 7,2004

Her occupational therapist said that she did wonderful today.Her and the physical therapist exercised her for a little while. She needs to stretch the left side of her neck out a little.She favors the right side.She is very nosey though and gets distracted easily. She saw her nurse across the room doing something with another baby and she was stretching her neck trying to see what she was doing.Her surgeon who did the trach stopped by before I got there and her nurse asked him directly if she had the malacia in her bronchioles and he said no.So that is good news.They restarted her fortification yesterday so she is very gasey and y today. So they stopped it, no one seemed to know why she got put back on it.She was vomiting during the night and they thought it was because of the fortification and increase in calories.She is getting annoyed with the bed and not being held. When she gets y I have to wrap my arms around her and snuggle her in the bed and she stops crying .Both of us will be very happy when she can be held again.

June 5, 2004

They finally spaced her feedings out a little.I think sometimes they forget she's no longer a newborn. She's every 4 hours now instead of 3.Plus they gave her a little more volume. She fights her naps now, trying to rub her eyes then gets frustrated because the IV board is on her hand and she keeps hitting herself in the face with it.She's also loosing alot of her hair. She has male patterned baldness . Her blanket is full of hair .

June 4,2004

Allie is having a good day smiling and listening to her music. Her nurse gave her some Tylenol just because she felt she should give her something but she doesn't seem to be having any discomfort.They told me that her bronch she had before the surgery showed that she had bronchial malacia also.I'm not sure if this is true or not because the surgeon never came around to speak to me last night.They are going to have speech therapy see her next week to evaluate her swallowing so they can try to feed her.She also went back to her CPAP settings (she had to be on settings yesterday because they gave her the paralizing ).She's all over the bed now that she isn't restricted as much dancing and wiggling.

June 3,2004

They called me this morning at 7:30 am and told me her surgery was scheduled for noon .I held her for a few hours before the surgery because she won't be allowed out of bed for a week afterwards. That won't sit very well with her I'm sure because she loves to get out of that bed.Her nurse Jessica made her a very nice trach board for her emergency supplies.Thanks Jessica!....She had a good time before she went playing games and laughing.It only took about an hour.They paralized her and gave her some morphine so she was just sleeping for awhile when she came back from surgery.She was a little hungry but would be satisfied with her paci.By 4 pm she was sucking so hard on her paci that you could hear her across the room.I asked them if she could eat and her doctor said yes .Within ten minutes after starting to eat she was happy,smiling,and went to sleep. She doesn't seem to care about the trach at all.Her cardiologist stopped by before the surgery and told me that they did an echo ,which she was a good for, and that he was very pleased with it ,her heart function is very good.

June 2, 2004

Good news,they moved her trach up to tomorrow.But as of tonight at 1am no one could tell me what time it will be tomorrow.Now that's just crazy.Let's hope it isn't 7am. She had a wonderful day today.Laughing and playing all day . Alot of her friends at the hospital stopped by to see her. She loves all the attention.Her thing is to lay on your lap with her legs hanging over.It looks like you don't know how to hold her but that is how she likes to lay. And if you jiggle her all around it's better yet.

May 31, 2004

We're still pushing to get that trach moved up. She's been here long enough we can't sit three weeks just waiting .Maybe if we bug them everyday they'll do it just to shut us up.She was a wiggle worm today the whole time Tom was holding her, like she usually is for him. She knows who she can get away with it from.

May 29,2004

Important day in Allie's history she wore her first pair of jeans today! She's been having good days, no issues just playing, laughing and dancing to her music. She loves her music.

May 26,2004

She had her floro study today. Her peep is currently at 12 when they turned her to 11 she started to clamp down and when they got to 8 she was totally clamped.This means that she definately needs the trach. They said that the first opening they had for it was June 17th! They will try to work on that.I can't get a straight answer as to how long she will need to stay in the hospital after the trach. One told me 2 weeks , one said 4 and the other said possibly two months. The cardiologist said that her heart is healed now and everything is fine there and that is why she isn't turning blue anymore.

May 24, 2004

They got an IV in her today, not really sure why , but then she was sweating and the tape fell off and it fell out.She had a great day , up for a bit smiling and playing.14 days spell free!!

May 23, 2004

They lost her IV today then after multiple sticks the doctor said they could just leave it out.She has been vomiting yesterday and today they think it is from her medicine since it is usually shortly after she gets it. So they decreased it.She's 10lbs 5ozs now.

May 21, 2004

They are going to re-evaluate if she needs fortification in the morning . I'd say that's a good idea since she went from 9lbs 7ozs to 10lbs 4ozs in 5 days! Slept most of the day then got up at night , her usual, she takes after her mother.

May 20,2004

I spoke to her attending doctor today about the leak in her ventricle.She said it is insignificant.She said they want to do an airway floro study to check her peep requirements on the vent. No spells again today.She was smiling alot today and playing.She likes when you "get" those chubby cheeks.

May 19,2004

Today was pretty good, she was dancing and playing.Later she had some gas issues but she didn't turn blue.They started her immunizations.The occupational therapist came by and is making her some new splints.

May 18, 2004

I spoke with her doctor today and he really can't come up with a reason why but the fact of the matter is she isn't turning blue anymore. They said that she will definately need the gastrotube with the trach because she won't eat enough on her own. We would like to avoid this but they said that all trached kids wind up needing a gastrotube.After they left I changed her and took her out , she was sitting on my lap, we were playing,then I witnessed her first belly laugh!! It was the cutest thing ever.She was in a very good mood today , she even started laughing when the nurse suctioned her mouth.We put her CD's on and she was wiggling all over the place. They were laughing at her "dancing" .

May 17, 2004

They started her on Captopril for her heart today so they can take the milrinone off.They also turned her ventilator settings down again.Today they said that she has a small leak in her VSD repair. Now they are just putting her in her crib sideways because that's where she goes to anyway.

May 15, 2004

Dad got to hold her today for awhile. She was a little restless but did ok . We got her thru a couple of issues that normally would be blue spells .She had some gas issues again today because the tube wasn't vented, but once she got it out she settled down.She kept turing herself sideways in the crib because she wanted to look at her toys and couldn't see them from the angle she was at.

May 14, 2004

Her weight is up to 9lbs 11ozs today.Doing well , no spells.

May 13, 2004

Having a much better day.She is back to re-starting feeds again at 30cc every 3 hours.She lost one of her peripheral IV's so she is down to one. They are talking about putting a pic line in her now. They checked an ultrasound of the head because of the code but that was fine and so is her chest xray.When I talked to the nurse practicioner later that morning she said that they had a long discussion with cardiology and they feel that she should be turned over to neonatology's service now since her problems aren't surgical anymore.They put her back up to full feeds, took her off the digoxin because her heart rate at rest is too low and placed her on the milrinone again instead.They also gave her some extra lasix.Then she informed me that Allie has 4 old rib fractures on the left.They thought these were from her code but then they started tracing them back on the chest xrays and they started all the way back on April 5th.She said they are possibly from chest PT.

May 12,2004

We got a call at 4am again saying Allie had another cardiac arrest.They had to do some compressions on her and bag her.They gave her some pavulon to paralize her so they could get an IV in her.The doctor said that she didn't know why it happened because she was fine all day. Not sure where she got this from because Allie had issues with gas and distention all day and had multiple desating spells.She came around after the code and was back to baseline. During the afternoon we got another call from the nurse practicioner just to let us know that she was placed back to her regular vent settings and that the echo and lab work they did was ok.She said that cardiology saw her and determined that it was vagal!!!!!!!! I've been telling them this for 2 months.

May 11, 2004

Allie had a bad day today.Her feeding tube wasn't vented and she has been having gas pains all day, rolling around the bed, crying and drawing up her legs. She is miserable with it.Her abdomen is distended and she can't sleep.

May 10,2004

Allie had a good day today , no spells , she sat out on my lap for about three hours looking around.She was sleeping sitting up then because everytime I tried to lay her down she thought she was missing something and started crying and fussing.The milrinone is off and the groin line came out.The nurse practicioner talked to me awhile about the plan which is to do a bronchcosopy, tracheostomy and a gastrotube at the same time.That will be as soon as cardiology ok's her for the surgery.They want to do it as soon as possible so that she doesn't get too far behind developmentally.She said they could teach her sign language but that would be difficult for her because she only has the one hand to use really. They can't tell us yet if she will come home on the respirator or not.

May 9, 2004

When I arrived at the hospital today they had a picture hanging on Allie's crib of her for Mother's day!They lowered her vent settings again today.Her hyperal and lipids are off and her feeds are up to 70cc every three hours.They said they will take the milrinone off tomorrow and take her groin IV out.She had a few blue spells today requiring morphine and versed again.Of course after that she slept for awhile.

May 8,2004

They are increasing her feeds again , up to 40 cc today.She's having alot of issues with gas again and then vomited. After they vented her feeding tube she settled down and went to sleep.They took out the chest tube and decreased the rate on her ventilator today also.

May 7,2004

They gave her a larger endotube today because during her code yesterday they put a 3.0 in for some reason when she had a 3.5 in all this time.So since she has had that size since she is born and she is much larger now they moved her up to a 4.0 tube.They restarted her feedings today.They are weaning her vent down.She had her repeat echo today and we were told it was "fabulous" .That's quite different than yesterday. The nurse practicioner told us it was because of the milrinone, must be a miracle .They are starting her on digoxin today so they can wean the milrinone off in a few days.They took the morphine off.Said the chest tube had to be in for a few more days.The good news is she is back to being as fiesty as ever .When they were re-tubing her despite morphine and versed and three people holding her down she got her hand out and knocked the tube out of the doctors hand!

May 6,2004

We got a bad call around midnight last night.Allie had a cardiac arrest.She had vomited and turned blue, her heart rate was down between 40-60 so they did compressions on her.They were bagging her but it wasn't coming up so they gave her some epinephrine down her endotube.They thought maybe it was a problem with her endotube so they took it out and put a new one in.After some more compressions her heart rate came back up. They put a central line and peripheral IV in her, placed her back on full vent settings, and started Morphine and Pavulon drips for sedation and to paralize her again.Afterwards her vital signs were stable again. By morning the nurse practicioner called us again.She said that Allie's left lung was filled with fluid and she needed a chest tube.They did an echocardiogram and it was bad it showed poor heart function and they had to put her back on the milrinone drip. They did and ultrasound of her head to make sure nothing was wrong there.On her work her count showed a huge shift to the left (signs of an infection) so they put her on a few antibiotics..........When we got there she looked better than when we left! Her color was pink her vital signs were fine.The nurse practicioner came over and said that they put the chest tube in but really didn't get anything out.She said they don't know what caused it but the repeat chest xray was perfectly clear. Maybe it was just collapsed lung instead.The large shift to the left on the count was not true it was a lab error!!!They took the paralizing agent off and were weaning her respirator settings down.The ultra sound of her head was fine.The echo cardiogram showed overall poor function but the cardiologist said that it sometimes looks like that right after a cardiac arrest and they would repeat it in the morning.She was placed on the milrinone drip again because of this echo.She is going to be put back on TPN and Lipids til tomorrow at which time they will restart her feedings.Allie was asleep most of the night with small awake periods.

May 5,2004

A little irritable today , dealing with gas pains all day, so they gave her some sedation which she promptly vomited .Then she gagged her feeding tube out and had to have that re-inserted.They took her IV out and she hasn't had any spells all day.

May 4,2004

Today she is a little better.They are weaning her morphine drip off.She had a blue spell today that the nurse practicioner witnessed and said it was definately a bronchospasms. She said that they will have to do a bronch and probably trach her but won't do it for six weeks after her heart surgery. She's back on full feedings now and they also turned her respirator back to CPAP settings.And the big news for the day is her nurse left her on her back and when she returned Allie was on her side!

May 3,2004

Allie is very swollen today her eyes were crusted and swollen shut when we came to see her. After wiping them out she was able to open them and look at her toys a bit.Her potassium is back up to 4.6.They took out her aterial line.She's still dropping her heart rate. Today down to the 60's for absolutely no reason. Her weight is now up to 4540 grams.

May 2,2004

They did and echo on her today and she was getting upset because they had to press on her chest to do it so they had to give her some extra sedation.Today they took out her pacemaker wires, right ventricle lines and her foley catheter.They also took her off the dopamine and milrinone drips after seeing the echo results. After all that they moved her back to the NICU because they needed a bed in the cardiac unit for someone else. Her potassium is low today down to 2.8. They have her on the warmer light here in the NICU because her nurse said she was very cold when she was moved down. They changed her sedation drip here too from Fentyl back to Morphine. She's a little more awake but still kind of stoned looking.Looked at her toys for a little while but that was about it.

May 1,2004

Allie is still having blue spells.Her sats were down to the 40's during the night again.They had to increase the Peep to 10.They increased her sedation and paralized her to keep her still.Her chest tube came out,they took the dressing off of her incision and took her NG tube out.Her nose was bleeding quite a bit after that huge NG tube came out so they had to wait a few hours to put the feeding tube in.When they tried they couldn't get it in because of all the swelling and a clot in her nose so they had to put it thru her mouth and start feedings that way. She also got some again today.Her hemaglobin was down to 9 again.

April 30,2004

Allie did well with her surgery today. They were able to just stitch the atria hole ,patch the ventricular hole , remove the muscle mass and dilated her pulmonary artery.They couldn't find a weak spot on the trachea so they didn't do the other surgery.She looked ok , swollen and groggy but ok.She of course has multiple lines and wires attached.She is having a little bit of high pressure but nothing outrageous.The bad news is she is still having blue spells although she didn't drop her heart rate when she did it.They had to put her on some heavy sedation because the usual stuff wasn't working because she has been getting it so frequently.

April 29,2004

Well her open heart surgery is scheduled for 7:30am tomorrow.She had a very good day today,was out of bed for a long time.When Daddy came to visit her tonight she got so excited as soon as she heard his voice.Wiggling all over the place and smiling.She had a pretty bad spell right before bedtime.Heart rate down to the 40's and she got all limp.I can't wait to get this surgery done and hopefully that will end these spells.

April 28,2004

She had a decent day today. She had her echocardiogram earlier.I held her for many hours and she did good , mostly just looking around, she even turned her upper body right around when she wanted to look at her mobile.

April 27,2004

Today she turned blue for no reason when the occupational therapist was working with her just all of a sudden blue.She's going to make her new splint since she is ready for a further turn on her arm.When I spoke to the cardiologist today he told me that she has a hole in her atria as well as her ventricle and also has an extra bunch of muscle tissue that needs to be removed.Her surgery will be on friday.

April 26,2004

I spoke with one of her doctors today and told him of my concerns that she is having more frequent , worse spells.He agreed and said they were not extubating her for that reason and also that she would need the heart surgery.She is very pale looking today and when we inquired found out her count was very low. So he deceided also to give her today.Later on I spoke to the cardiologist he said that she needed to have the defect closed and also at the same time they would do an aortopexy to try to fix the weak spot in her trachea.They would have to open her chest to do this.

April 25,2004

Today she had an episode while just laying there doing nothing with her eyes closed. She just turned blue all of a sudden and dropped her heart rate.

April 24,2004

Multiple spells today ,one bad one down into the 30's with her heart rate again.They just seem to be getting worse all the time I don't see any improvement.

April 20,2004

Having alot of trouble with the gas pains all day. She's growing good though 8lbs 13oz now.The nurse practicioner said they would be starting her on steroids on sunday so they could extubate her on monday or tuesday and if she didn't pass that they would trach her on thursday.Her eye is completely cleared up now.

April 18,2004

Allie had company today.Uncle George and Aunt Kathy, cousins George and Kimberly and Kim's friend came to see her.Her IV fell out so they took her off the antibiotics.She's having alot of drainage from her left eye today otherwise she had a decent day only a few small spells.

April 17,2004

She was having a decent day but towards the evening she started to sound very tight respiratory wise and they gave her a treatment and bagged her alittle.She was getting a little blue and dropping her sats and heart rate again.The doctor came by and looked at her.She had a chest xray and some sedation and of course specimens sent to check for an infection again. Another IV and antibiotics.She hardly cried at all for the IV tonight I'm very proud of her.

Monday, June 14, 2004 2:29 AM CDT

March 16,2004

Today's update was that they were going to do a bronch with possible extubation next week.Seems a little funny to me considering how many times she turns blue.She said that the echo showed that the heart defect had closed some.

March 14,2004

She had an echo cardiogram today which showed a little congestive heart failure.She had a few blue spells one where she just turned blue without much warning at all.She weighs 8lbs 4oz now and is 20 1/2 inches long.

March 12,2004

She started back on her feedings yesterday and is tolerating them.

March 11,2004

Allie's first Easter!!! She got all dressed up despite the IV sticking out of her scalp.Gramma Schermerhorn is here visiting for the past three days and brought her a bunny amongst all her other presents.I don't think she knows what to look at first.She even sat in her bouncy chair for a while today.

Monday, June 14, 2004 2:04 AM CDT

Somewhat better day but she was sedated alot of the day. Her xray of her abdomen still shows the distention so she's not allowed to eat again today.They started her on hyperal and lipids for nutritian.She did get to get out of bed to be held for a few hours but slept for most of it.

March 9,2004

When I came in today the IV was back in her head again.She had high residuals on her tube feedings .They did an xray of her abdomen and saw alot of gas in her stomach and colon.So she had the whole work up again.She got stuck with needles five times today.She is not allowed to eat for the next 24 hours (something she is not happy about).Her count is down but apparently it was quite a bit lower yesterday.Allie was having alot of issues with gas today they put a vent on her feeding tube and she was forcing fluid up thru that.She had a really bad episode about 5 o'clock.Her heart rate started dropping, they started to bag her but she did not respond and her heart rate went down to the 30's and she was very blue and limp.VERY scarry to watch!! It took a few minutes for her to come around.They also put her back on antiobiotics today.They also put her on breathing treatments and sedated her so after that she went to sleep.

March 8,2004

Allie's doing better , all of her test were negative so they discontinued her antibiotics and her IV. She's up to 8lbs 2 oz now.

March 6,2004

Her EEG was negative today which is good. They still want to work her up more so they did a lumbar puncture(spinal tap) today which was also negative.She had a slight fever overnight so they started her on two antibiotics.Also Allie's eyes are very swollen today almost to the point where she can't open them.

March 5,2004

When I arrived today she had an IV in her scalp again which always means something didn't go good.They think she may have taken a seizure today but no one is certain .It was during one of her blue spells.They did an ultrasound of her head and that was fine.She will have an EEG tomorrow.They also worked her up for an infection and that will take a couple days to come back.Her stools are still positive for but they don't know why.

March 3,2004

Had a decent day ,she likes to listen to her music box .In the evening she had 3 blue spells but now her heart rate drops first instead of her oxygen saturation.Sat's down to 60's heart rate down to 50's.She got to wear her own pajamas for the first time tonight.

April 2,2004

Had a good day was up alot just looking at her toys . She really likes her pink elephant with light up cheeks.She did have a major episode around 2am her heart rate went down to the 40's.They were of course bagging her . Afterwards they did a chest xray and found the tube not to be in far enough again.So they repositioned it and then she did fine.

March 31,2004

She had a good day today .Just a few minimal blue spells. She sat out of bed in a sitting position for about 2 hours just looking around. She really seemed to enjoy that.

March 30,2004

Spoke to the cardiologist today he said she had a 7mm ventricular septal defect. He said if she starts having symptoms such as not gaining weight , turning blue, short of breath ect. then she would need to have it surgically repaired. They would do this between two and three months.He also said she has some mild pulmonary stenosis.

March 29,2004

I spoke to her doctor today and they deceided not to extubate her this week because she has been having so many blue spells. He talked to the ENT doctor who said she could be intubated 6-8 weeks before she would need a trach.It's only been a month so far so we are going to wait and see if she improves as she grows.Otherwise she will be trached.

March 28,2004

Major blue spell when out in the chair today.Sat's down to the 60's, sweaty had to be bagged.She did this three times.She has been doing this since her tube was retaped last night so they did a chest xray and found out the tube wasn't in far enough.Once they fixed the tube she was better. She is also having some in her stools although they don't know why.They changed her feedings in case that was the reason.Her digoxin level was elevated yesterday and they have been doing frequent levels since and holding her doses.

March 26,2004

Gramma Schermerhorn and Kim came to see her today .Gramma got to hold her, thank God she didn't have any blue spells then. Her occupational therapist was in and was very happy with her hands after the 24 hour trial.She said her joints were much looser.

March 25,2004

Her vent settings are turned down a little bit today. She also received her splints and has to wear them for 24 hours straight for today only then she will go on a schedule. She doesn't seem to mind them . Mostly she ignores them but she will occassionally pull her hands out of them.

March 24,2004

The NICU moved today to the sixth floor . She is now in room 6031.She's eating again and doing fine with that.

March 23,2004

Not a bad day today. I gave her a bath and she enjoyed it , then Dad got to hold her for awhile and an she went right to sleep. She has been vomiting the last three days here and there and having high residuals on her tube feedings so they deceided to hold her feedings all day.They also did an xray of her abdomen but only saw air in her stomach.The occupational therapist saw her today and is going to make her splints for her arms.

March 22,2004

She's having a decent day. Just a few small blue spells. She's up to 7lbs 3oz.

March 21,2004

When I arrived today Allie had an IV in her scalp , apparently she had a few blue spells at night that were pretty bad and they had to put the IV in to give her some morphine.They did a chest xray and found that the tube was out too far so they put it down a little and then she did fine after that.

march 20,2004

She had one bad episode today where she turned blue and dropped her heart rate to the 70's.She was being bagged.As she was being bagged she continued to drop her heart rate into the 50's before finally recovering.She got to wear clothes today for the first time!!!

March 18,2004

Allie had a little problem tonight after getting some Versed for sedation. She stopped breathing and had to be bagged for a little while then they put a rate on her ventilator.

march 18,2004

They moved her to another room in the same unit today where she won't get lost in the crowd. The orthopedist finally saw her. He said that she is missing her radial bone in the left arm and the one in the right is shorter than the ulna.The nurse practicioner told us they would lengthen the right arm and straigten the left hand with a cast or splint. They would also do a surgery to make a thumb so she can grip. They were suppose to try extubating her today but now have deceided to wait 2-3 weeks from the bronch.

march 17,2004

She had a few blue spells today but sometimes is able to correct herself without being placed on the bag.They started her on two heart medications today.The cardiologist wrote in her chart that he felt she had some heart failure.

march 16,2004

Allie has had multiple blue spells today dropping her oxygen saturation into the 60's.They were able to take the rate off her ventilator so she is breathing on her own now and she just gets pressure from the ventilator. She is on room air.

march 14,2004

She is up to full feedings now and tolerating them well.Having a few "blue spells".

march 13,2004

They have been sedating her alot. If they don't she gets mad and then turns blue.

march 12,2004

Allie had a few more "blue spells " during the night where she had to be bagged ,suctioned and given morphine.Dad got to hold her tonight for the first time.

march 11,2004

Allie had her bronch today. Her trachea is collapsing in on itself to the point of where the sides almost touch each other.Good thing is the malacia doesn't extend into her bronchials and he said that he doubts she will need a trach which they said was a possibility.He said they will leave her intubated and try to extubate again in a week or two.Tonight she had a problem , she started to get dusky looking and her oxygen and heartrate went down.She turned very blue.They bagged her a little bit then suctioned her and turned her oxygen up. At that point she became pink again.

march 10.2004

They are going to do a bronchoscopy on her tomorrow to see what is going on with her trachea.Also the small thumb on her left hand has turned black . Somehow it got twisted and the blood supply got cut off so they are going to remove it when they do the bronch tomorrow.

march 9,2004

She's doing very well with her feedings. So good now that they were able to take her off the IV nutrition.

march 8,2004

They took her chest tube out today and therefore she was able to be held for the first time which was wonderful for both of us.

march 6,2004

Aunt Kelly and Joe came to visit today. Her nurse put a bow in her hair for the occassion.She had a good day, comfortable. Allie is tolerating more feeds now.

March 5,2004

She was awake alot today.Really likes her pacifier.She got the biliruben light off this afternoon. Her residuals on her tube feeding are high so they were unable to advance her feedings.

March 3,2004

She was given the pacifier tonight for the first time. She likes it.

March 3,2004

They had to put her under the bili light today so she is wearing funky purple eye patches that look like aviator goggles. She doesn't care for them. They also increased her feeding.

march 2,2004

The doctor came by tonight and said that her trachea was collapsing and that is why she had to be reintubated.

march 2,2004

She's having a better day today.They turned down her ventilator settings and took the suction off of her chest tube.The chest tube isn't draining so that is good , that means that so far she doesn't have any leak at the surgery site which is quite common.They also started feeding her thur a tube feeding.She was a little fussy today but whenever Dad would kiss her leg she would stop crying.

march 1,2004

They tried to extubate Allie today but they had to reintubate her fairly soon afterwards.Her biliruben is also up and she will probably have to go under the biliruben light.

Sunday, Feb 29, 2004 10:57 PM CDT

They haven't taken Allie off the respirator yet but she is doing well otherwise.

Saturday, Feb 28, 2004 10:51 PM CDT

Alison was born today but she has been flown to Children's Hospital of Philadelphia. Her eosphagus is not connected to her stomach it is connected to her trachea instead.They also found a hole in her heart between the two ventricles and some bones are missing in her arms. She had surgery a few hours after she arrived and all went well.The surgeon was happy with what he found. He had enough tissue to connect the esophagus back together without any grafts.However she is on the respirator. They may try to take her off tommorrow.

Sunday, June 6, 2004 8:15 PM CDT

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