What a Week

We had one heck of a week this week. We had several deaths. Collin had to go to the ER on Monday and get his first stitches. He got wound up in a swing and got the skin on his side caught in it and it pulled the skin. It happened at our sitters house and Jason picked him up not knowing it happened because it had just happened a few minutes before he got there. He called me and I could just hear Collin screaming in the background. I'm sure it will be the first of many. With all that I have not been sleeping well at night either. I have been sleeping for about an hour and then am awake for about 4 or 5 hours. So I am tired out.

Surgery

Well we have decided to go ahead with the surgery to remove Kylee's port. It will be taken out on July 9th. We are going down on the 8th for her pre-op and then it will be taken out on the 9th and we are hoping to come home on the 9th if all goes well. We decided that if we are not going to be needing lab draws every week like we did when she first started with all her seizure meds that we shouldn't be risking the chance for infection and should get it out. Plus it saves me a monthly trip to the dr's office to get it flushed with heprin if she is not using it. So that is the plan for now. We are going to get our name on the list for the Ronald McDonald House 5 days before the surgery (that is the new policy for the one by us..you use to be able to call anytime even if it was months in advance) and hopefully we get a room there. If not I do know how to get to the Hampton so we can always stay there. You get a discount so the room is only 50 dollars however it is sad when the staff that works there remember you. The last time we stayed there the lady said to my dad oh your grand daughter is still in the hospital.

Glasses and Equipment

Kylee's glasses came in yesterday so I am going to take her in on Monday to pick them up. I can't wait to get them. My mom and our nurse Marsha went in to try the frames on her so I didn't get to see what they looked like on her. I just seen them in the book when I picked them out. I was also very happy with the price. The last pair we got cost us around the $200 range. They told me the state did not cover anything. This new place we went to said the state cover lenses so we didn't have to pay for this. So nice. Speaking of state...Kylee is up for her Katie Beckett (her insurance with the state for disabled children) eligibility already. It goes so fast. Every year you have to fill out a huge packet of papers and the every other year you fill the papers our but also have to have a visit. This is our year for the visit. There is no doubt in my mind that she won't qualify it is just the time it takes to do all of it.

The CP center of Green Bay is going to see if they can help us purchase Kylee's car seat. I have to once again fill out a ton of paperwork and then they will sit down and discuss and decide if they will help us or not. I didn't know that they would do that because Kylee does not have a diagnosis of CP but I guess that doesn't matter.

Kylee has really been getting in to watching movies lately. Our nurse Marsha brings her laptop and then puts Kylee in her chair with the laptop as close to her as possible. She has been watching her sign language videos and her Rock and Roll Strawberry Shortcake (thanks for the movie the Klings...she loves it). So I have been asking around for a "junk" laptop and someone at work thinks they have one for us. She is going to try a movie in it this weekend. I will be so excited if we get one.

Does She Really Understand?

Lately Kylee has been answer questions when you ask her something. Well answering you non verbally. It almost seems as if she understands you. Which makes you wonder if she understands more then you think. The other night she did not want to get her teeth brushed and I kept saying Kylee doesn't want her teeth brushed and she would shake her head no. Then I asked her if she liked her Strawberry Shortcake video and she got all excited and starting smiling and laughing. Signing all done to her when she is all done eating and she shakes her head yes or smiles. Now she doesn't do this stuff every day but a lot so it makes you wonder. If only I could get inside that little head of hers and know what she is thinking.

Happy Father's Day

Just want to say happy father's day to all the father's. Kylee is very lucky to have a very special father. He takes such wonderful care of her. Life is not always easy when you have a child with special needs. He does things for her things that I know he never in a million years would have pictured himself doing. Taking in #2 samples to the hospital, checking oxygen levels, dealing with feeding tubes, endless Dr appointments and the list goes on and on. Not only is he a great father to Kylee but to our sons also. I just want to take this moment to say THANK YOU for all that you do. I know I don't say it often enough. Happy Fathers Day!!!

Our hearts are heavy

Our Hearts are Heavy

Our family has had a rough week this week. On Saturday morning we got the news that our cousin Kenny (my mother's niece's husband) had passed away unexpectedly while on a bus trip (he was a bus driver) to Washington DC of a heart attack. On Sunday we received the new that my Uncle Larry (my mothers brother) had passed away and this morning I was given the news that on Sunday Bonnie Barrington (a faithful reader of Kylee's blog and a proud grandma of Payton whose carbridge is linked to Kylee's page) had also passed away unexpectedly from a heart attack. With that being said our hearts are heavy and our thoughts and prayers go out to all 3 families. Always live life to the fullest and enjoy each day.

In or Out

In or Out

Kylee's old neurologist nurse called on Monday and said that there is a recall on her port (a device planted under the skin of her chest so that they can get blood on the first poke) and she has to get it taken out as soon as possible. Immediately I had flash backs to the last time she got put to sleep and how she ended up in ICU and we didn't think she was going to make it. They wanted done at St. Vincent's which is not our normal hospital to have things done at. I said I was very uneasy about that and needed to talk to Kylee's team of doctors. I was on the phone to Milwaukee before I even told Jason. The next day I called the doctors office to find out more about the recall as I failed to ask why it was being recalled. They said it wasn't recalled that they are just having problems removing them after they have been in for a while. I again called Milwaukee with this information. It was agreed it should come out and that St Vincent's was not the place for her and that is should be done at Children's in Milwaukee. I called St Vincents and cancelled the surgery. Shortly after I cancelled I got a call from the old neurologist again stating there isn't a recall and they only had problems removing it in 2 patients. One it had been in for 8 years and crumbled as they were taking it out and the other one was in for a few years and had a growth around it. So they said she probably doesn't need it out. I almost felt like they were thinking if you aren't going to have it done here with us then she doesn't really need it out. So at this time we have the surgery planned for July 8th and 9th at Children's in Milwaukee but after Kylee's team of doctors talk it may be cancelled for now. Everyone is just very uneasy about putting her to sleep at this time.

Vacation

On a much happier note vacation went great. All 3 of the kids loved the waterpark. Kylee did great the first day. There was hardly anyone there and she loved being in the water. Her and I were laying on a tube on the lazy river and I couldn't get out of the way for the water squiter and we got all wet. At first she didn't know what to do but when it was all done she turned and looked and me and started laughing it. It was a very nice time together and went to quickly.

Feeding

Mom is once again playing Dr. I do that often. I have decided to start feeding Kylee is her stomach again to see how she does. Before she got her GJ tube she was throwing up everything we put in her stomach. So I started about a week ago and she gets fed an ounce and a half in her stomach and has not thrown up at all. I am now going to increase that to 2 ounces. My goal is to be able to give her a few bolus feeds (6oz of milk in an hour) into her stomach 2-3 times a day and then do the rest thru the night at a slower rate into the j-tube (the part that skips the stomach and goes right to the intestines). That way she doesn't have to be hooked up to a cord 22 hours a day. She has also started to eat a little more orally. My goal for that is to get her to eat enough that we could do the sprinkles of the depakote vs the liquid so she doesn't have to gag and dry heave every time we give her the liquid. She does not get any of her medicine thru the mouth it all goes into the j tube but there is something about that depakote that makes her want to throw up everytime. So eating has been going pretty good until she started teething now she doesn't want you near her mouth. On Monday when we had speech we were feeding her and she just didn't want to eat. I signed all done to her and she got the biggest smile on her face and started laughing like finally mom you got it.....I don't want to eat.

Kylee's Room

We got Kylee's room done over vacation. We painted it all pink and she has chocolate brown castles and crown above her window and closet and a chocolate brown letter saying that says it is not easy being a princess. It turned out cute. I want to say thank you to Danelle (my niece) for helping me paint the room (one of my least favorite thing to do) and thank you to Shelia Wilson for the princess crown lamp and the Monkey Joe tickets for the boys. It was very thoughtful of you. I will try to post pictures of vacation and Kylee's room soon.

Poem

Kylee's nurse brought us a poem that she had gotten from another family that she works for. I thought I would share.......

This child is someone special,

this child is something rare.

this child is far from perfect,

for this world is far from fair.

but this child is here and with us,

and this child will share our home.

for this child is not unloved,

and this child is not alone.

This child will know its father,

and this child will know his fears.

this child will knowher mother,

and this child will know her tears.

this child may never run

or walk all on her own.

but this child is not unloved,

and this child is not alone.

this child will go easy,

into day or into night.

and we can stop her falling,

and we can give her light.

her family gives protection,

and each member does their part.

this family stands together,

though there's aching in their hearts.

this child is here and with us,

and this child will share our home.

oh, this child is not unloved,

this child is not alone.