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324 days ago
Please add some extra thoughts for Kylie tomorrow as she is going to have an MRI before she begins growth hormone shots to rule out anything and to get a baseline. She will be intubated for this procedure. She is a trooper and will do great, I just still get a little anxious when they talk of intubation. Thanks so much for checking in!!
341 days ago
Kylie and I have been sick off and on for about two weeks and this past Monday I felt we were all ok but...Wednesday night Kylie started with a cough and it progressively worsened after that. Friday morning she was just coughing non stop with a dry cough. They say dry coughs are worse because it means nothing is breaking up. I of course tried very hard to get Kylie into see her pulmonologist that day but could not get an appointment so we had to go with a pediatrician in the group. I really thought Kylie was just having some allergies and drainage causing the cough but, I was wrong. Her SPO2 was 93% which is low for Kylie. They began doing a breathing treatment and said she sounded "crackly". After the breathing treatment they would see if her SPO2 came up. I figured we were on our way to the hospital after her O2 was low because she was not seeing the pedi. that knows we can and have taken care of Kylie at much worse conditions. The nurse came back in to check her ...
497 days ago
Just reflecting on a conversation I had with a new friend that I can't get off my mind.... As I was walking with a new friend of mine I came to the realization that not everyone realizes just what we have been through with our CDH journey. It is a great feeling to see that we look so normal in other people's eyes. Chris, Kylie and I were taking a walk Monday night and we met our neighbors walking as well. Kylie and the other two children began running, playing and just being kids. Chris noticed Kylie getting a bit winded and walked to her and told her to calm down and take a break. Her face was red and sweaty and she was breathing heavier than normal, not a big deal to most kids. Kylie slowed very little and took a breather and we all began walking back home. Chris kept on looking back at Kylie and making sure she was ok, probably just looking a little overprotective. So the next night the neighbor and I were walking and just talking to pass time during our walk and we were ...
648 days ago
Well, the orthopedist did confirm that Kylie broke her humerous....she has a sling. It is the bone that is in between your clavicle and elbow. It is at the very top of the bone by her shoulder so a cast was not needed. The ortho. said that it was a very clean break and in kids heals in no time. Her pedi. said it was broken through the growth plate, but it was not. They retested a sample of urine and found no sugar in this sample....YEAH!! So, needless to say, Kylie is wonderful and keeping her sling on just perfect. She is such a good girl. She goes back to the ortho. in two weeks to see the progress. Kylie went to help with a high school dance last night for a little bit and she had a blast. It is funny to see the students in that atmosphere. She wanted to see the pretty dresses the girls were wearing. Most of all she wanted to dance on the dance floor. So this morning she is all in to dancing and has all of the radios on in the house. Too funny!!! We are ...
655 days ago
Well, I cannot believe it but Kylie is four year's old as of 02/03/08!! What a wonderful Birthday party we had for our sweet girl. We then enjoyed her actual birthday alone with the three of us. Kylie was so excited about her big day that she did not sleep much the night before her party. She has really gotten into having a party now. We just had lots of friends and family over for the big day and enjoyed food and friendship. She has just come so far and we feel so blessed to have her. She is truly amazing. Audrey Miller who Kylie calls "Baby Audrey" came to her party as well. She is just absolutely beautiful and I always enjoy catching up with her mother. It is nice to have her to talk with about CDH issues. Now for the bad news....Kylie broke her left arm and we are going to the orthopedist (sp??) this Monday to find out more information and what the treatment will be. It is the humerus (???) bone between her elbow and shoulder and it is broken ...
