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.