We have a date for the procedure

Rylee will be going back to Tampa Oct 6th and will have her procedure done on Oct, 7th

Update of last week.

I guess it's really almost two weeks ago now. We had a really busy but mostly fun week. Drew had 2 birthday parties(read post about my swim in the pool) he had a blast. It's always fun to see him play with all of his friends. It was also book week at his school and Thursday night was family fun night. I volunteered to work it, not sure what I was thinking. It was fine. but I worked a little longer then I was suppose to and that was a bit hard because Rylee needed to go to bed and James had kickball. Thank you Carly for taking over for me so we could leave. Drew had a great night playing with his friends and reading books with Mrs. Rhoda. It was really nice to get everyone together as a family. I can not stress enough how much he loves this school and how much they love him. Makes writing the check every month a little bit easier:)

Ok so kickball was a blast for James. His team lost and of course they lost to our friends team but he said he loved it. After the game the team went out to the Edison. I love that James has something to do besides work that he likes. He so busy with work and us that it's a night where he can just have some fun, he NEEDS it and deserves it. Hopefully they will win their next game. I will keep you posted and update with some photos.

I went out two nights in a row. That's a lot for me. Friday night was MNI at Mamapalooza Mom's house. It was fun. We watched What happens in Vegas( I think that's the name of it) I thought it was cute but some thought it was the worst movie they had ever seen. It was fun meeting so many new people. Lucky Lucinda did not have to drive so she had more beers then me:( I did enjoy the redstripes I had though, good old Jamaican beer:) Saturday James and I both went out. I can not express what a big deal this was. We have not been out together in over 7 months. It's really hard for both of us to leave Rylee girl. Our friend Leah sent us an email about a beer trolly in the Cape and we thought it would be fun so we decided to try and see if we could make it work. We did and we had a blast (thanks Leah for asking us.) People watching at the Pearl was a favorite for James and I. Sadly we had to leave early James had to work Sunday and again, the Rylee thing. It will probably be another 7 months before we go out together again but for one night we were out as if all was normal:)

Rylee

Just a quick update and I will be back tomorrow to update about everything else in the past week. It was a busy and fun one. Rylee lost a bit of weight, not good. I knew this was going to be the case since we had a long spat of vomiting everything up. If we can keep her vomit free she should gain so here's to a vomit free month. At this point she may alos have CVS and dis-functional digestive tract. We will have to wait until she is a bit older and bigger to figure all that out. With in the next 3 weeks she will go back to ACH and have a mickey button put in. I will keep you updated on when that will be. Her weeks are filled with therapy, feeding tube and Dr's. We are doing our best to involve her in everyday activities. When the days are good they are really good and when they are bad they are really bad. The problem is you just never know what day it's going to be. She is looking great her face is full her hair is getting longer and she is trying to communicate. Keep praying for good days. I will update more about the rest of us tomorrow.

Janet

Swimming with clothes on!!!!

Ok, so alot of you know that when I was preggo with Rylee a little boy almost drowned in our pool. It was one of the most horrifying moments ever. I'm narotic about water anyway, not really sure why. In my previous life I must have drowned or been burned to death as I have issues with those things. Yesterday Drew was invited to a pool party and against my better judgement we went. Thank the lord James made it home to watch Rylee. Well, one of our friends is pregnant with twins and she has 2 and 4 year old. She bought her husband with her to help. He was a little busy with all the other kids who wanted to jump all over him when their daughter jumped in the pool( the 2 year old) No one was moved to help so in I went in fully clothed, it was a sight. Not only was I soaking wet, when I went to change Drew in the bathroom toilet paper stuck to me and I had no idea. I walked out of the party and ran into publix soaking wet with toilet paper stuck to the back of my legs. Ugh, it was a sight but at least Lily was ok.

Fisher Price party

So Saturday we were invited to our friend Terra's house for a fisher price party. She won a contest and they sent her toys for all of us to try out. When we got there Rylee got down and played with one toy right away. Our child never does this. She hardly gets down and plays so for me this was a little emotional. Well they raffled off the toys and I will give you one guess who won it????? Yup, it was us, thanks Terra. The last thing we needed was another BIG toy both of our kids have not stopped playing with it. It was a fun day for all:)

We are still here and trying to get better at this.

Hey Everyone,

Sorry once again it has been so long since a post had been done. Since it has been called to my attention by many here goes.

Drew is doing great! Still loves school. Of course it's only Pre-K. I hope he still loves it when it's more work and less play. Soccer has started up again. We now have nite practices, ugh!!! It's really not that bad and he enjoys it. He does wonderful in practice but he's not that aggressive during the game, if you can believe it. I guess it's me telling him "no hands" all the time. Oh well, as long as he enjoys it.

Rylee is doing ok. She had rough week and a half. She was not keeping anything by mouth or tube down. We have taken her off food by mouth lowered the rate again and now she is doing much better. This of course does not help us get to bolus feeds but I don't really care as long as she gains. She has had a great weekend. Lets keep our fingers crossed that she continues. I started Mommy and me with her last week and it's a bit of a challenge because a lot of it is centered around food and she is behind all the other kids. We will stick with it and hope that she gets better. She had her speech eval and she does not really know how to chew correctly which is why she chokes a lot and her speech is behind so we will be starting that therapy soon. Afternoons are still a nightmare for us but we are working through it. All in all she is doing well for now and hopefully it will stay that way.

James and I are doing well too. James will be playing kickball on Thursdays, that should be funny stay tuned for an update on that. I was suppose to play too but they changed days and I can't do Thursdays plus we both can not be away from Rylee when she is on the tube.

Hope everyone had a great weekend.