In The Hospital

Just want to leave a quick note to let everyone know Kylee is in the hospital in Milwaukee right now. We had an episode of high blood pressure this morning (150/100) and unresponsiveness so we took her to the ER and she was taken to Milwaukee Children's. Don't know much more then that but will try to update as we get more news.

Christmas in July and Pictures

Christmas in July

So it is like Santa made a stop at our house this week. Kylee got her new car seat ( I have a picture below but it isn't a good one. I will have to try again). It is huge. It takes up about half of my back seat but it is super nice. It offers so much support for her head and trunk. We will forever be greatful to the annonymous donor who purchase it for us. We also got a video monitor. We are now able to put the monitor on Kylee and watch her while we are in another room or outside. You can also just push a button on it while in another room and make it play music. This week we are getting a double jog stroller. It will be so nice because then I can take all 3 kids for a walk at night or if I would have to go to the store or an appointment with all 3 kids I would have something to put them in. Kylee can't sit in a shopping cart so I am limited on where I can take her. So lots of new and exciting things.

New AFO's

Since Kylee had her big growth spurt she is in need of some new AFO's for her ankles. She use to only wear them for an hour a day but now she is wearing them more often. She usually wears them all day other then when she is sleeping. Her new AFO's are going to be pink with straps that have different colored hearts on them (they sure didn't have many choices for girls...I was hoping for some pink camo or princess ). I have pictures below of her getting fitted for her new AFO's. They come right to our home and do it. That is so nice.

Kylee's surgery and Ronald McDonald House

As I stated in my last post Kylee's surgery went really well. She recovered very quickly from it. I have a few pictures below of her getting ready to go into surgery and then a picture of her at the Ronald McDonald House (which is the best place ever....so whenever you go to McDonald's if you can put the extra change in the bucket it goes for a good cause). The last picture is a picture of Collin with some of the pop tabs we collected for the Ronald McDonald House. Collin was so proud to have collected so many. Thank you to everyone who has helped us collect them.

Kylee waiting to go in for surgery


Kylee sitting on Ronald's lap looking up at him

Collin in his PJ's holding one bag of pop tabs. He is so proud.


Kylee's New Glasses

Kylee got a new pair of glasses. This is the last pair we will be able to get that has the loops that go around her ears. I guess we got the largest size in that kind. I can't imagine not having them because I don't think she will leave them on. She does so well with them. She never takes them off or pulls at them.

Here We Go Again

Kylee once again has double ear infection. We just can't seem to get rid of them. Her tubes are still in place but they just keep coming back. So it was decided that this time we will do both ear drops and antibiotic. Hopefully that will kick it and she won't get c-diff back from the antibiotic. She is doing much better since she has been on the meidcation. So hopefully the week to come she will be feeling better and we can have a low key week. Just therapy and no Dr appointments.

Quick Update

Just wanted to give a quick update. Kylee's surgery is over. Things went well. They gave her a little something to relax her before hand which did the opposite and made her very hyper but we got to hear noises from her for the first time in a long time (she was trying to talk). The Dr said there was a little dried blood around the port which he hasn't seen before but wasn't concerned about it. The worse part was that it took her FOREVER to wake up. They put her to sleep at 11:30 and she did not wake up until 4:00. Once she woke up she was full of energy and as happy as could be. I have lots more I want to write about but don't have the time right now. I will post again soon and post pictures. Just wanted to let everyone know it is done and she did great. Thank you for all the prayers and support. We have such wonderful friends and family.

What a Big Girl

Weight

Kylee's 2 1/2 year old check up was on Thursday and she has grown so much. She has gained 6 pounds since March. She is currently 26 pounds and 35 inches long. She went for nothing on the growth chart to 20% for weight and I think 25% for height. We were so excited. That is huge for a 1P36 child. This has however made me worry about what is down the road for her. Typically 1P36 children are either extremely under weight or extremely over weight. I am just worried it will go to the extremely over weight. I know no pleasing me. If I'm not worried about one thing it is another. She also had double ear infection at the time of the visit so we are yet again trying another ear drop. We just don't want to give an antibiotic. She also had a slow leak in her GJ tube so we had to take her in to get that replaced. So all and all a great 2 1/2 year old check up.

Car Seat

Well today was the meeting at the Cerebral Palsy (CP) center for Kylee's car seat and they called and said that they approved us and that they are paying for it in full. We were so excited. They said an anonymous donor is paying for all of it and that HE loves getting thank you's from families so we are going to take a picture of her in it and send it to the CP center to give to him. We are so grateful to him. We will be getting it on July 21st and I hear it is rather large and some call it a "lazy boy" because it is so comfortable. It will fit her to 105 pounds and is a Britax Traveller. Only negative is it only comes in brown so no pink for the princess :)

Surgery

Kylee is all scheduled to have her surgery to remove her port next week. We are going down on Wednesday and then the surgery will be done on Thursday. I am a little on the nervous side about it but I know it needs to be done. She is not being put so far under that she will need breathing tubes so that makes me feel a little better. Please keep us in your thoughts and prayers on Thursday July 9th.