School

Pictures

Kylee at story time at the library for Halloween

Kylee and her brother at story time

Kylee in her swing in the basement. She loves to swing. Can't wait to get our new swing.

When Kylee is tired she just falls asleep where ever she wants to.

School

Our life has been so busy the last few weeks. Kylee has been home from the hospital for a while and feeling much better but we have been busy with getting her ready for school. We have had lots of meetings with the nurse, PT, OT, Speech, vision teacher and mobility specialist. Kylee's IEP is on Dec 2nd and she will more then likely be starting right after that with a slow transition into school. How time has gone by so fast. It seems like just yesterday we were sitting in the NICU with her and now she is going to school. It brings tears to my eyes just thinking about it. I think she is really going to like school and do wonderful. We go on Friday to meet her teacher and see the class room as well as meet with speech and PT.

Nurse

We have hired 2 nurses as one of our nurses has left. We hired a Tuesday nurse who I must say I am in LOVE with. She has lived the life and I think she will be a great resource for me. She has a 23 year old daughter with CP and decided to become a nurse after that....hmm....sounds like the foot steps I want to take. We have also hired another nurse for 1-2 nights a week and for an occasional weekend. She is a "new" nurse but I always say that is not bad as they often have fresh new ideas.

Big Girl Bed

Kylee has been sleeping in her big girl bed for a week now and loving it. My dad has made a few adjustments to a twin bed so she has more room to roll around. She is so happy in there she smiles and laughs every time you put her in it. I can't thank my dad enough for everything he has done for her. He also made her a wooden bench for us to practice sitting on and also to place toys on while we are practicing sitting. Kylee has started to get more interested in toys and is reaching out for them which she hasn't done since she was 6 months old. We are so excited with the progress she is making developmental wise. I will try to post pictures of the bed and bench next time....I also want to post pictures of her on her school trip on Friday.

Standing
Here is a little video of Kylee standing next to the sofa. She has to lay over the sofa but it is a start. This was my first time trying to tape anything on my camera so it is side ways and doesn't last long because she moved her leg and I thought she was going to fall but she was only readjusting herself.

Hospital Visit

Don't have much time to post right now but just wanted to let everyone know that Kylee has been in the hospital since Saturday and we just got home today. She has c-diff yet again and had stuff coming out both ends on Saturday so we took her in for what we thought would be a quick IV and sent on our way but it didn't happen that way. She is doing much better and we are all happy to be home. I will try to post again soon.

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 :)

C-Diff Again

C-Diff

Yes...Kylee has c-diff again. I am thinking she has had it for about 2-3 weeks now and we just got it diagnosed on Saturday. She started with a lot of #2 diapers and we thought maybe we were running her feeds on her pump to fast as we were trying to shorten the time she had to be hooked up to the feeding tube. So we dropped her down and she still continued. I called the Dr and said I wanted her tested for c-diff. She sent all the paperwork over and I went and picked up the kit right away. The lab tech told me I needed 2 tablespoons of stool so it took me 5-7 days and I wasn't even close to that. It is so runny it ends up soaked in the diaper or everywhere else. So I took it in and asked if they could run it on what I had and a different then what gave me the test said we had way more then they needed. She has no idea why they would of told us we needed so much. So it came back positive yesterday and we started on the medicine yesterday. She also was starting to become dehydrated from going so much that I was worried she was going to end up in the hospital with an IV. We have such wonderful nurses that they just got her going on the pedialyte and lots of water and she was good to go.

Procedure

I was worried that with the c-diff Kylee's procedures for Monday would be cancelled but they said we are good to go. They will just put us in isolation once we get to the hospital. So on Monday we are going to Milwaukee and she is having an upper scope done with biopsies of her throat, her mass removed from her ear and a culture of her ear so we are sure to be treating the non-stop ear infection with the correct medicine and a new GJ tube (feeding tube). So it will be a busy day but hopefully we will be done with procedures for a while.

Therapy

Even with Kylee not feeling well she has been doing great when it comes to therapy. As I stated she ate a whole jar of baby food which she continues to eat pretty good. She is getting better at her sitting and she is now able to stand by the sofa with nothing on her legs but her orthotics. She kind of lays over the sofa cushion but just the fact that she is keeping her legs down is huge. Usually she gets them tucked under her butt as fast as she can. We also got some new equipment. We got an airwalker swing for in the basement. It was donated by another family. Kylee loves to swing but winter is coming and we won't be able to be outside much. We also got something called a HOSPA dress. It is kind of like a older style johnny jumper. It is a suit that goes around her body and then it is on a pulley system. This is to help her weight bear on her leg but to also teach her cause and affect. Like when she kicks her leg she spins so they want to teach her that if she does it again she will get the same response. Accidental movements become purposeful movements.

Week Ahead

So Monday is Kylee's procedures, Tuesday is speech and hopefully she does as well as last time, Wednesday we have my mother's brother's funeral and I also have to have Kylee's paperwork for school all signed by Wednesday and we have physical therapy on Wednesday. The rest of the week nothing to exciting.....just how I like it :)

**I have pictures of Kylee in her swing and standing by the sofa that I will try to post soon...we are on our way to our block party but wanted to post an update before we left otherwise time gets away from me.

Eating

Eating

Just wanted to post a quick note that Kylee ate a whole jar of number 1 baby food yesterday. We are so excited about it. She ate most of it during speech therapy and I was telling her how proud I was of her and she gave me the biggest smile ever. It just melted my heart and wanted to make our nurse cry. I love moments like that. Then she finished the jar off at supper. Small step for some but a huge step for us. I hope she continues on this path. Just wanted to share the news with everyone.

New Pictures and Appointments

Pictures

Kylee getting ready to go for a walk with her nurse.

Kylee was a ladybug for Halloween at the campground.

Kylee again getting ready to go for a walk.

Trying to get a nice picture of the kids is hard work. Guess this will have to do.

Appointments

We have had 2 important Dr appointments in the last week. We hard cardiology which we were told her heart looked really good considering how high her blood pressure has been even with the increase in her blood pressure medicine. If she continues to have high blood pressures we are going to have to increase her again. Her left side of her heart is also still leaking but is not leaking anymore then what it was back in February so she is not too considered about it at this time. So all in all a pretty good appointment. We don't have to go back to see her for 6 months and just have to continue to call with her blood pressure results.

We had her ENT appointment today in Milwaukee. He said she has a granuloma. It is basically a build up in tissue. This is the reason for her constant ear infections. The granuloma does not allow the drops to get all the way and it always is basically a breading ground for infection. We are going to use ear drops until she has her scope done on the 28th and then the ENT is going to come in and remove it and then if it still looks infected they will do a culture to make sure we are treating it with the correct medication and then they also said sometimes they have to suction out the ear so everything gets out so the ear drops get all the way in. So all in all was very happy to hear that we should be able to get rid of the ear infections soon. He also said he don't feel her tonsils and adenoids need to be taken right now. He said he feels that the risk of taking them out doesn't out weigh the benefits. He said if her snoring gets worse or she has more apnea episodes we can revisit that decision.

Therapy

Kylee has been doing pretty good in therapy lately. She is able to sit by herself for about 20-30 seconds. We have been using knee immobilizers (thanks to Alayna's mom) and she has been doing really good standing next to the sofa. She also is doing really good with helping to get dressed and undressed. She picks her head up to take her shirt off and then she often leaves it up until you put the next shirt on. Sometimes you even have to tell her it is ok to put her head down or she just keeps holding it up. She is also starting to reach out more to grab at things. All may seem like little things but are huge to us. We are also getting started again on the school process. We started last year towards the end of school and decided we would finish up when school started again and are hoping she can do a early start (October or November) and do a slow start instead of throwing her into it in December. As always enjoying every minute with Kylee and am enjoying all the changes we are seeing in her. She shows such great potential.