Update

Ok, so not much of a weight gain today, bummer. She and I are still pretty miserable. The days are excruciatingly long. On a plus side we LOVE all of our nurses they truly ROCK and make this tolerble.

Dum Dums

I want to kiss the inventor of those itty bitty lollipops. They have literally saved our life this past week in the hospital. Rylee is miserable here but as long as she has a Dum Dum and I'm walking her in the papoose all is good. We walk about 10-12 hours a day which is good since all I eat is crap. I can't put her down to eat so it's usually fast and fried, yuck!!! Thanks to my Dad going to a few stores we should hopefully have enough lollipops to get us home:)

RLYEE IS GAINING A BIT OF WEIGHT!!!!!!!!!!!!!!!

Title says it all:) I'm so excited I know there is so much more ahead but at least she is putting on a few ounces a day. Everything is still set for her to get the perm tube on Friday. With any luck we will be out of here Sunday or Monday.

Hopital Update

Not to much to tell. Things are going along fairly well except for lack of sleep. Rylee will not sleep here at all. I will post more as we find out more. Oh some good news the kidneys look good!!!!

Change of plans with Rylee

Rylee will go into the hospital Thursday in the AM to insert the NG tube not the perm yet. In light of some new test results we will do this first then next Friday she will most likely have the perm tube put in or A TPN. We will be in the hopital for at about 10 days. I will try to keep everyone updated as best as possible. We love you all and all the well wishes.

Janet

Rylee Update

This will be short with stuff left out but here is the main gist of what is happening in the very near future. Rylee will not have the NG tube put in with a long hospital stay. They will be operating this week(we hope) to put in a perm tube. We have no clue if it will help or not but we will find out faster then if we did the NG tube. She will be in the hospital for about 3 days. The first day will be pure recovery they are cutting her gut open. After that the hook up and feeding will start if all is ok she can come home. Shortly after she is home we will most likely be leaving for St. Louis. Please keep her in your prayers.

Janet

Rylee Update

The test that we have been waiting for was never done. Since so many have been run we lost track a bit. This morning we took her to get it done and will hopefully have the results back soon. We will head back to St. Pete on Sunday and consult with the Docs on Monday. A final decison on whether we try the J-tube or not should be decided this day. If we give it a shot she will probably be in the hossy for 7-10 days as this can be very painful. I will try and keep everyone posted not sure if I will have the computer or not. I will at least try and get on my Dad's. I believe prayers can be answered so please pray for her.

Puddle Jumping

So yesterday we had a BBQ for Mom's birthday. We had all gone swimming while the kids were napping. Drew woke up to the pouring rain. He was so upset that he missed swimming with us so we decided the next best thing, puddle jumping. He had a blast!!! We dressed him in his rain gear and the rest of us got umbrellas and off we went. There is nothing better then seeing your 4 year old having innocent blissful fun. Not a care in the world on his face, it was awesome.

What to say

Ok, so we understand that people don't know what to say to us because of Rylee so what a lot of people are doing is staying away from us or just stopped calling. Although we understand, know that this is probably when we need our friends the most. We don't need to talk about it all the time we just need distractions from all of it. I'm unable to talk to family about it and for the most part I don't want to have long drawn out conversations. We have lost a lot of people in our lives this year because of this and we don't want to lose more. It's better to say something then nothing. We know this is no fun for everyone else and that people don't really want to be bothered but just keep in mind what life is like for us. We love all of you and understand, it's just hard that the people you think will be there for you are the ones we hear from the least. On the 21st we will be back in St. Pete.

Where to start???

I have no idea where to start, we have done so much lately. I think I last left off with an update on Rylee. I know it was a poor update and I apologize for that. Sometimes I'm at a loss for words or basically just shut down. NY was wonderful in many ways and horrible in others. It was the most gut wrenching week and no one should have to go through what I did. My kids were let down again by some one who in my opinion has their priorities really screwed up. On to the good stuff. We were able to spend lots of time with my friends and some family. Drew was so excited to go to the bronz Zoo again and just be the center of every ones attention. We went to the feast twice which he loved. I have been going to this same feast since I was born and everyone goes back each year. It's great to see all the people I grew up with all in one place and of course the zeppolis, oh and free beer. The fire house does have some good qualities. All in all a week that I wish would have been different on many levels but also comforting to be "HOME" We left NY a day early because we decided we wanted to spend an extra day in Baltimore. I'm so happy we did this. I miss living there. The inner harbour, canton and Fells were awesome. We took Drew and Rylee to Port Discovery and they both loved it. For whatever reason Drew decided that he wanted to milk a cow while we were in PA. There are cows everywhere so I thought someone will let us try, NOPE. They have machines that do this. We were told about this maze place that has a cow kids can learn on so off we went. They were not going to get the cow until the week after we left. He was so disappointed. Do you know that this port discovery place had a fake cow that you could milk and it spat out water. He was in his glory. This place was really cool and it melted my heart to see there were even things for Rylee to do. We walked around the Harbour went on the ancient carousel(a few times), went to Camden yards, fells point, canton we basically just had an awesome time. We ate at ESPN zone Drew died and went to heaven. I was able to meet up with some friends for a lunch date. It was so weird to walk by all the places I got drunk at years ago, it seems as if it were yesterday. After MD we packed up and started the 12 hour drive to Hilton Head SC. It was great to spend a few days with my Aunt and Uncle. Drew drove all over in the golf cart and corvette. He now tells me daily that Mimi is going to buy these things for him. Listen my parents do a lot for us and buy us a lot but I will tell you for sure he will get the golf cart but there is no way he will get a corvette. We had a lot of fun on the 4th. My Aunt and Uncle took us to their friends house Sue and Paul. They live on the water with a really nice pool, and boat deck. When I think of heaven this is what I think off. At dusk the dolphins came out and they were swimming right in front of the deck, amazing. We BBQ'd and stayed for the fireworks. To my surprise the kids did awesome but the next day was one of recovery. On our last day there and our last day of vacation before we started the 8 hour drive home we decided to go to Hilton Head Beach and Sea Pines. Drew and Rylee had a great time jumping into the waves. Yes, my 25 inch 12pd daughter thought she could just keep walking further and further into the water to get to the waves. She's ballsy like her Mom but someone needs to explain to her how tiny she is. After the beach we went to Sea Pines to go to the Salty Dog for ice cream and a little time on the playground. We were all tired and it was early to bed since we were getting up to head home in the morning. We had an awesome vacation minus the 206 dollar ticket on the way home which even my Mother says was not my fault but we were in some podunk FL town and I guess they have nothing better to do then give out bogus tickets. Oh well, what can you do. Can't wait for next years road trip.