Easter Pictures

These are a few of the pictures we had taken last weekend. They turned out really good considering the weather conditions. We are still trying to raise money for our March of Dimes team. My cousin Misty Knight's 8th Grade class had a penny war this year and they raised $600 for our team. I was so honored that my cousin chose to give it to a great non profit organization. We will be walking on 5/1/11 and please feel free to let me know if you want to walk with us. My e-mail is kari_webb@yahoo.com if you want to e-mail me. We had Tiny K here on Friday and no concerns with the girls. Our main focus is getting Rylee through her surgery and then we will talk more about getting Rylee off her gel thickner. I called our OT therapist at CMH and still waiting to hear back from her. Rylee has had some crud in her lungs since Thursday and we have been trying to get her to cough more. I am hoping this doesn't turn into anything too major. We had a great weekend with this wonderful weather and spent some time with friends on Saturday night. The girls had a great time.

2 year adjusted birthday

Tomorrow the girls will be officially two years old for their adjusted age. My due date was 4/4/09 and they were born on 12/20/08 so that is why we still follow their adjusted age too. My mom helped me on Friday with both girls so Jordan didn't have to stay home alone. We started the day off in the ENT clinic and were there for 1 1/2 hours and that was very entertaining. It is not easy containing the girls in doctor's offices and they were a handful. The doctor scoped Rylee's airway with a camera and we were able to confirm her right vocal cord is not moving at all and is paralyzed. This could have happened from all her intubations, from her trach, or from her reconstruction surgery. The doctor didn't seem to concerned and I wasn't too worried until I came home and researched it. There can be a lot of complications from having a paralyzed vocal cord and they major one is aspiration. Rylee is still on thickened liquids and I will need to get with OT to see what their thoughts are on getting her off the thickened liquids. Our plan was to stop thickening her drinks this spring once cold and flu season was over but not sure what we will do now. The research also showed that she could have trouble speaking in sentences as she will not be able to get enough air and could also have trouble getting air while running, etc. We already know that she has a really soft voice and that part doesn't bother me. After not hearing her voice for 1 1/2 years I will take anything. Her voice does sound really cute. I am not sure how she will feel about this when she gets older. Rylee is scheduled for surgery on 4/20 to help get her airway to close. The doctor reminded me that this is a very serious surgery and we are not to take it lightly. She will have to stay the night at least one night and maybe two nights. She will have to go back another date to get the trach scar taken care of. The doctor kept calling it a pretty surgery. After this appointment we went to lunch at Manny's and then went back for Rylee's Pre Op appointment. Once we arrived the receptionist told us that she wasn't scheduled and we would need to schedule another appointment. Needless to say I wasn't too happy so they got us in within an hour. My poor mom got the pleasure of holding Rylee while they took her vitals and she does not enjoy this by any means. My mom was pretty shocked that something this simple upset her so much. It just goes to show how much she hates being in doctor's offices and hospitals. We took the girls to Overland Park today to get their pictures taken with a 6 day old lamb and a couple baby ducks. Rylee absolutely loved the lamb and we couldn't keep her away from it. She also wanted to hold the ducks but we quickly realized that the ducks would not survive the way she was holding them. I think she almost squeezed them to death. Jordan didn't know what to think of the animals and kept her distance. I am trying to get Rylee to tell daddy we need to move to the country so she can have some baby lambs :)

Jordan's 2 year coming home anniversary

Yesterday was Jordan's two year coming home anniversary. It doesn't seem like it has been that long since we brought this little girl home. She spent 96 days in the NICU and has had no major health problems since bringing her home. We do know that she has mild hearing loss in her right ear but won't be able to know the extent of the amount of loss until she is able to participate in a hearing test. Other than that and a few wheezing days here and there she is doing great. I like to sing "You are my sunshine" to her and she has started singing it when I pick her up now. It just melts my heart every time I hear her say it. I took both girls to the doctor's office on Friday for Rylee's last synagis vaccination and all went well. They both did very good while waiting for the nurse to call us back. I wouldn't let them off my lap and they couldn't understand why I wouldn't let them down to play. Rylee didn't enjoy her shots and neither did I. I am so glad these shots are over with. Rylee has an appointment with ENT on Friday at CMH and I think the doctor is going to scope her vocal cord area in the office and to make sure she is ready for her surgery. She is still pretty quiet and they want to make sure her vocal cords are moving correctly. She will have her airway surgery sometime in April to close up her stoma site. We will have to stay the night in the hospital so not looking forward to that part of the surgery. We will also go to her pre-op appointment to make sure she is good to go for her surgery. The picture with the three girls is from this weekend. We celebrated Addisyn's third birthday and Saturday and had a great time. She is only 9 months older than the girls and probably a foot taller! lol I included some pictures from the day we brought Jordan home.

27 Months

Our girls are 27 months today. We will be celebrating their two year adjusted birthday soon. Not a lot going on with us these days. We took the girls to a 60th birthday party today and the girls had a great time. They were pretty shy but opened up after awhile and put on quite the show. I think Rylee has her appointment on Friday for her last synagis vaccination and I will be so glad to say good bye to these shots. They have been a part of our life for three years now and I am ready to be done with them. We are really ready to get the girls out of the house more but still need to be careful as RSV/colds and flu are still going around. Both girls are really starting to talk more and more each day. Jordan talks non stop and we are able to understand her pretty good. Rylee is still pretty quiet and it is a little harder understanding what she has to say. She likes to count a lot and is really trying to learn the abc's. Jordan still likes to identify colors and boss Rylee around. I think we her Ry Ry over a hundred times each day. Their new word of the week is basketball as it has been on at our house all weekend. They got into it last night and didn't enjoy the commercials. They would keep saying ba ket ball. I don't have a lot to share with you this week. Hope all is well with everyone and have a good week.

2 week post

I didn't do a post with pictures last week as I put the March of Dimes information up so I will make up for it this week. I am not sure where to even start. I did end up taking Jordan to the doctor a couple weeks ago as she was wheezing pretty bad for 6 days. It ended up just being upper respiratory and she was given steroids. She sounded much better after a couple days. She has had a lot of upper respiratory trouble during the past few months so not sure what is causing her trouble. Jordan hasn't been eating very good lately so I weighed her tonight and she only weighed 22 pounds. Rylee has been eating much better and weighs about 25 pounds. I can tell a difference when I pick her up compared to Jordan. I called the ENT clinic and we are just waiting on an appointment for April and then she will have her surgery sometime in May. We enjoyed a day out of the house on Saturday. I had to be in Emporia, Ks as my state basketball team was being recognized at the state basketball tournament. We decided to leave the girls at my grandma's as we didn't want to expose them to too many germs. We went to the local zoo and had a great time. My mom, sister, and nephew joined us and it was so much fun watching the girls just run around. They loved being outside and seeing all the animals. Troy and I left them at my grandma's house and then went and had a great time seeing friends for a few hours. Troy is on spring break this week so he is running daddy day care for a few days. My mom is coming to watch the girls on Wednesday as he has an appointment and then nanny MiMi will be back on Thursday.

March of Dimes Walk

No baby should have to be born this small.






It is that time again. We are going to be walking in the March of Dimes walk on 5/1/11. If anyone is interested in walking with us please let me or Troy know as soon as you can. The link to our site is to the right of this post or I posted the website below. We are so thankful for what the March of Dimes has done for our girls. There is not a day that goes by that I don't think how blessed we are that our girls survived their early delivery. Troy and I really don't like asking for money from people but want to do what we can for this great organization. We raised over a $1000 last year and didn't put much effort into it. We will be so glad that both of our girls get to actually walk this year with us.

http://www.marchforbabies.org/webbgirls