Trip to Milwaukee

Trip to Milwaukee

So Kylee and daddy made the trip to Milwaukee on Thursday and things went really well. In fact I am very jealous. Out of the 3 times Kylee has gotten her GJ tube replaced I have not been able to go back in the room with her. Jason acutely got to go back and stay in the room the whole time. He said that when they pulled the old one out one of the ladies looked very strangely at it and said oh we usually take those out. Here they left what is called the stringer inside her. I think it is a device they use to help guide it in. Didn't sound to healthy but at least it is out and we have learned once again that we should just go to Milwaukee and not have anything done close to home. She also saw the ENT and said her ears look great so hopefully we make it thru the winter with no ear infections.

Physical Therapy

Kylee is doing so well in PT. I am thinking about taping a session so I can post it because it is just unbelievable how well she is doing. She can stand up with much less support then she use to. On Thursday the PT just kind of had to hold her at her waist and chest but she did all the leg work. She is also getting better about being in the crawl position and he said she is ready to crawl. He thinks if we just work with her on it a little every day that she will learn to crawl. I'm always so happy after PT because she does so well. I am also sad thinking that she only has one more session with him before he leaves us. That will be very sad. He has come so far with her. Oh ya...he also brought to my attention that Kylee has grown 12 inches in one year. She was 26 inches last year at this time when we ordered her stander and at her last Dr visit she was 38 inches. CRAZY!!!!!

Bed

We are in a bed search..Kylee has outgrown her crib but couldn't decide what to do for her next bed. We knew there was no way we could afford a sleep safe bed. So hopefully with the help of our wonderful Grandpa Eddie (my dad) she is going to have a new bed by her birthday. We are purchasing a used captain bed (a bed with drawers under it) that has a very high head and foot board. Grandpa is going to sand it down and re stain it for use and then make side rails for it out of wood and plexus glass (kind of like the sleep safe beds) that will be on hinges to drop the sides down. Should work out good. Her birthday is for a couple more months but we have decided to do a Kylee needs a new bed party and so we are having a pajama party and everyone has to wear there pajama's. Then we are going to ask for new things for her "big girl bed".

THANK YOU ASHLEY

Kylee got the best present in the mail a couple of weeks ago. We usually put a plain old white cotton 2x2 around Kylee's feeding tube site. One of Kylee's friends had a really cute one (Beau) and so I asked his mom where she got them from and she said her mom made it. So not long after that we got a gift in the mail with all kinds of girl cloth 2x2's. There was Hello Kitty, flowers, lady bugs and then a Santa one for Christmas. They are so cute. I even got the laundry bag to wash them in. It was the best gift every. I can't thank Ashley and her mom enough for them. I also have to let you know the lady in Milwaukee that put her tube in commented on how cute it was and wanted to know where we got them from. Jason said from a good friend :)

(I will try to post pictures in the next couple of days...I promise).

Eating

Baby Food and Milk

Kylee has been doing really well in the eating department lately. I know we have a long long ways to go but it is a start. She has been eating some stage 1 and stage 2 baby food pretty well. She can eat anywhere from a couple teaspoons to a couple tablespoons. She also started taking some liquids out of a bottle. She isn't taking a lot...about 1.5 ounces but it is a start. Sometimes I just have to let it drip in her mouth and she doesn't have a good suck eat but I will take whatever I can get. She makes the sucking motion with her lips just doesn't have a strong suck. So we will just keep working on it. Practice makes perfect. We have also gotten her down to only having to be on her feeding tube for 18 hours which is so nice. Now it is time to push the luck. The Dr said to shoot for 14-18 hours but that some kids can do 12. He said it just depends on what she can tolerate.

C-diff

What can I say about C-diff...it is just no fun. I feel like the number 2 diapers never stop. We are just about done with the medicine it is still coming out in full force. I am thinking we are going to have to do another sample and probably another round of medicine. We have decided to purchase some disposable bed chucks to help save on the laundry otherwise we were having to change her sheets 1-2 times a day because when she goes it goes everywhere. We also had to clean our carpet today as she had a major mess earlier in the week and another one today.

Therapy

Kylee has been doing really good in therapy. She is still able to stand on the side of the sofa with no knee immobilizers for about 10 minutes. She is still doing good at sitting by her self we just have to increase her strength. She gets really tired out with it. Her HOPSA dress (a therapy vest hooked up to a pulley system.....I will have to take a picture of her in it and post it....she looks like she is ready for take off in it) she is doing really well in also. She can only stay in there for about 5 minutes but she is very active it in for 5 minutes. She is putting her legs down and swing herself all over the place in it which no one really thought she would do anything in it so I guess that is a big step. Her swing we haven't been using much as it is not the swing that the therapist wanted so we are in the process of trying to purchase the correct swing. The one we have is for a bigger child and not to comfortable for her.

Kylee has started to do her own therapy...she rolls her way over to the sofa...puts her legs up on the side of it and then lifts her butt off the ground. She does it over and over and over. She loves doing it. It is great to help strengthen her legs but it is soo funny how much she loves to do it.

Our PT Steve is leaving at the end of the month and we are really going to miss him. He works so well with Kylee and she has come so far but at least his time with her would have been almost over with anyway as she will be starting school soon which leads me to my next topic.......

School

So the whole school process seems to be a very long process and I feel like we have been working on it forever but I am think there should be an end in sight. I have signed all kinds of paperwork and talked to all kinds of people. We still do not have a start date yet but for sure by her 3rd birthday however we were hoping to do a slow transition starting before her 3rd birthday. We have also not decided if she will go in the morning or afternoon. She like to sleep in til 9:00 but then she takes a nap at 2:00 so really neither fits into her schedule but I guess we will have to get her on a new schedule once we find out.

I have to laugh because I am so afraid to take Kylee to the Dr to get her flu shot because of all the germs but yet I am not even thinking twice about sending her to a germ infested school.

Appointments

This week Kylee has appointments in Milwaukee on Thursday. She is getting a new feeding tube placed in the morning and then ENT follow-up in the afternoon. I think daddy (Jason) will be making the trip all on his own so that I can work. He does a wonderful job with her but it is hard for me to let go and let someone do something that I normally do and not be in on the appointments. I guess I have to let go some day :)