Sunday, November 28, 2010

Happy Thanksgiving

I hope everyone had a safe and wonderful Thanksgiving holiday. Troy and I were off on Wednesday so we took advantage of our nanny and went out on a date. Most of the date consisted of shopping for our little girls but it was still a great time. We took the girls to my aunt's house in Americus, Ks on Thursday and I am not sure if we will be invited back for Christmas dinner! Just kidding Aunt Kathy I know you will let us back into your home with double trouble. I had some friends come visit for the weekend so Troy took the girls on a 2 1/2 hour road trip to his family Thanksgiving. I think all went well until he got a $145.00 speeding ticket on the way home. I think he was in a hurry to get the girls home to their mommy. It did feel very weird not having them with me all day. Rylee woke up with a fever this morning and her lungs have a lot of secretions in them. She still doesn't do a very good job a coughing up the phlegm so we are working on that. I gave her some tylenol and motrin a couple times today and her fever hasn't been back. I also gave her some mucinex type stuff that she had with her trach to loosen up the secretions and that seems to help. My mom is watching both girls tomorrow as our nanny is off so lets pray Rylee stays well. I have a feeling that it might be here aspirating some of her foods or liquids. I have been giving her a few drinks here and there and not sure if she can handle it quite yet.

Sunday, November 21, 2010

23 Months

Our little girls turned 23 months yesterday and have been with us for 701 days. What a journey it has been. I took Rylee to CMH on Monday for her OT and nutrition appointment and everything went well. Rylee ate some snacks while we were there and even took a few drinks. We were given the okay to keep her home over the flu and cold season as she will be going to her pediatrician every 28 to 30 days. I will just keep the nutritionist updated with her weight gain. The nutritionist was amazed at how much Rylee has grown in the past six weeks and is gaining weight like she should. We are now only giving her 4 ounces of her pediasure and all her daily water through her tube and hoping she will start drinking more of her liquids. We can still give her more pediasure if we feel she didn't eat well during the day. It is really nice knowing she is doing most of her eating all on her own. I almost had a panic attack while we were in our appointment as they called a Code Blue alarm over the intercom. This brought back some bad memories that I would love to forget. I was so worried about the child as it was right next door to where we were. Troy came home Thursday afternoon with a sore throat and wasn't feeling well so he was confined to the bedroom and only let out with a mask. The girls thought it was quite weird and didn't know what to think. I need to get some adult mask in our house as all we have are pediatric Mickey Mouse ones and they were a little small for Troy. He started feeling better Saturday and we are hoping and praying our little girls don't get sick. We had Thanksgiving lunch today with the Phillips side and it was a great day. Rylee walked up to all the kids and waved Hi to all of them. It was really really cute and I can't wait to see her be able to play with other kids once cold and flu season is over with. Jordan is still pretty shy out in public but seems to be warming up more and more. We were scheduled for Rylee's synagis vaccination on Wednesday and minutes before walking out the door I called to make sure they had received it in our doctor's office and we were informed that it was not even shipped out yet. Needless to say I was not a very happy mommy. They got the paperwork straightened out and Rylee was able to get this vaccination on Friday. It was not too fun seeing her get these shots and the nurse hated it even more. The nurse and doctor were both very amazed at how far Rylee has come in just a short time. The doctor was not real comfortable with us taking Rylee to a huge family gathering but I just couldn't bear to keep her home. It is so nice just being able to leave our house without all the medical equipment in tow.

Sunday, November 14, 2010

Fall 2010 Pictures

Here are some of the pictures we had taken a few weeks ago in Shawnee Mission Park. We have had a great week at home with the girls. I am taking Rylee to CMH tomorrow to meet with OT so they can see how she is doing on her feedings and they will weigh her and if she has gained weight we might get a few weeks off from having to go to CMH. Rylee is scheduled for her synagis vaccination on Wednesday and I am not looking forward to taking her to the doctor for this. I almost backed out of taking her as I don't want to put her through these shots but Troy quickly reminded me how important it is that she get any help she can. We will hopefully enjoy the holidays with friends and family a little more knowing that she has a better chance to fight off RSV with these vaccinations. She will have to go to the doctor every 28 to 30 days until this Spring. She is already starting to throw a fit when we walk into doctors offices so I am sure this won't help her any. Jordan is still just Jordan. We had a back step with her bottles and were giving her one to two bottles a day depending on how much milk she drank each day. She is on day two of no bottle and she had a major temper tantrum on the kitchen floor right before bed. It really broke my heart seeing her so mad. She will still only drink about 4 to 6 oz a day of milk so hopefully she will start drinking more soon or we may have to see what the doctor has to say.

Sunday, November 7, 2010

19 Months Adjusted

The girls are now officially 19 months for their adjusted age. Rylee had her scheduled bronchoscopy on Thursday and her trachea is healing up nicely and has even grown in size since 7/1/10. The doctor was very pleased with her progress but did not want to close up her trach hole just yet. She wants us to get through the winter months and then we will schedule a surgery for this spring. She let us know that it is no simple surgery and there can be some complications. She will have to put stitches in her trachea and then keep her overnight to make sure that the stitches stay in place. If they were to come out she could get too much air on the outside of her lungs and cause it to collapse. We sensed that the doctor would like Rylee to get at least one cold this winter just to make sure she can handle it well. I am not so sure I am ready for her to get a chest cold just yet. They have both had a few running noses but never any chest colds. I hope we can make it through another winter without having to worry about them. The stronger their lungs get the better off they will be. Rylee didn't put on her normal show this time following her surgery. It did take her awhile to come out of the recovery room. One of the nurses said she just held her while she slept and then when she woke up she did not like all the IV's and monitors on her. She required some O2 for awhile so we had to stay a couple hours to get her weaned off of it. We just found out that Rylee qualifies for synagis (RSV) this year and I was very surprised that she qualified. I really wished that Jordan would qualify too since we will be taking Ry in for her shots every 28 days. The company is going to see what they can do to help us out with our insurance company. We are still paying for synagis from last year so financially it would be nice to not have to worry about it. We made the three hour trip to Sedan, Ks on Tuesday for Troy's aunt's funeral and the girls did very well. Several family members got to meet the girls and the service was very nice. The girls are very social and seem to be opening up to people very well. We went to Jordan's primary nurse Erin's wedding reception on Friday night and had a wonderful time. I was a little nervous about having the girls out late at night but they didn't seem to mind. They put on quite a show for everyone there. They danced until the crowd came onto the floor and then they started to crash. It was so nice to see a few of our favorite nurses at the reception. We don't have anything scheduled for this week and it is a nice break for me. Just when I think I am building my leave back up something else comes up and I need to take time off work.