Week in Review

It seems that I get here Sunday mornings to write. James is at work and the kids are still sleeping, perfect time. This will hopefully be quick because I need to get us all ready for the beach in a few. Love the beach, it's one of my happy places.

It will be no surprise to anyone when I say I could have done without this week. Rylee has not been feeling well at all. Everyday has been pretty much miserable since we went to wannado city. I love her, and feel so awful for her but at the same time it's so hard for me too. Almost everyday of just crying all day or just wanting to be held. I feel like the worst Mom. I want to be there for her but sometimes I just want to scream ENOUGH. Enough for her and enough for me. How awful of me to feel that way. Usually she has about 3 bad days then a few good and I deal much better. This time for the exception of one good day and a few various hours it has been weeks. I hope we turn the corner soon. I just want her to be able to feel good and have fun. I just want her to be two.

On Monday James Dad was taken to the hospital and ended up in the ICU. Not sure who knows what so I won't get into here but he has been pretty sick. Yesterday he finally looked better, hoping that continues. The only good thing about him getting sick is that Drew gets to see Uncle John. He does not get to see him often. On Friday John decided to stay and surprise Drew and go to shabat. Drew really needed this. Things are so hard for him and this was all about him and he knew it. John and I don't aw lays agree on things in life but I thank him for doing this.

Thursday we found out that not only is the insurance company no longer going to pay for Rylee's tube or food but they now denied her for therapy. I can't even get into how angry I am. We are appealing it so please pray for us that we will win.

Thursday night was bunco night, Thank God. Love bunco night talking, games, drinking, eating what more could I ask for. I really needed to get out and hang with the girls, thanks everyone for a great night.

I hate being Debbie the Downer but no matter where I go or what I do, I talk about Rylee. I know people are not interested and are over it. It's really hard to not talk about something that is so much a part of your life. I get that other peoples lives are filled with many other things and are tired of hearing about it. The next time someone makes a comment about our lives or not wanting to talk to us because of our situation don't make it so I can hear it, thanks. All you have to do is remove yourself from our lives, you won't be the first. Sorry to vent here but it is what it is.

Now on to happier things. I need to go so I can get ready for the beach. Love spending time with the family. I thank God everyday that my kids have a love for the beach like their Mama:)

Sweet Babies

Two post in a day, that's a lot for me. During our vacation I took pictures of the kids sleeping. Love pics of sleeping children. No matter how bad the day has been, they always look like angels at night. For the longest time Drew just slept with his hand sticking out of the blanket. Like father like son. Rylee has the plethora of pacis surrounding her, likes 3 south nurses, love you gals. Remember I'm coming to you when it's time to break this habit. The cord coming out of Rylee is her feeding tube. The best and worst thing. She knows how to get it a part and how to turn the machine off. This truly makes life really difficult. On the other hand when she does not play with it, it gives her the much needed calories.

Staycation!!

Spring Break started last Thursday and it has been non-stop since then. Thank God most of it has been fun. We did some day trips and one overnight trip. I also took Drew out of school one day to go to Wannado city, thanks Leah, Lucinda and Terra. This was their birthday present to Drew, what a great idea. It's the coolest place!! The kids have to go to work to earn money, they can be firemen, dentist, police, EMS, Vet, Publix worker, Chocolate maker and the list goes on. I decided to only stay until 2. Rylee was with us and would not have made it much longer plus we were having issues with her tube that day, again. Since it was a year pass I didn't feel the need to make the day jam packed because we will be back this summer. The best part is when they work they earn money to go to the movies, get their nails done, go on rides etc.... Lots of fun and highly suggest it:)

Thursday was the day spring break really started for us and we started the morning off at Monkey Playhouse and the afternoon at Naples visiting with Karen Devine and fam. We had a great time. The kids went swimming, on an Easter egg hunt and of course a pinata. This was also a birthday party for one of their friends. Fun was had by all.

This was also the day that we also got awful news. Our insurance company dropped Rylee's diagnosis and will no longer cover her tube stuff or food. James and I were irate, hurt, in despair, literally sick over it. We are fighting it with everything we have but it looks to be a losing battle. Please Pray that things turn around.

Friday started off with more bad news( nothing to do with Rylee) something to do with a family friend in NY. I won't write about it out of respect for them but it hit home for our family. I know that you read the blog and just want you to know that you are in our prayers and we love you. God will give you the strength to get through this.

Now on to the happy part of the day. James stayed home with Rylee to give her a break and I took Drew and his friend Hailey to captiva to see Jeannine, George and their family. I always have a great time visiting with them and miss Jeannine so much. I'm thankful that they come down here twice a year and I get to see them. The kids had so much fun playing in the water and sand.

Saturday we packed up all the bikes and headed to Ding Darling for a bike ride. Not everyone had a great time because the first 3 miles was on gravel and it was hard, not to mention the rocks flying at me of off cars, thanks Sean for trying to cover me. I had a great time, could have done with out the gravel but other then that it was a great ride. The kids were in the trailer and loved it too. Only major downside was that with the gravel the trailer bumped around a lot and the straps must have rubbed against Rylee's tube and irritated the crap out of it. The next 4 days sucked for her. I almost ran her into the ER Monday night.

Sunday was Easter!!! It was a nice relaxing day. James works on Sundays so he is never home for when the Easter Bunny comes:( The kids had so much fun getting their baskets. Rylee napped and drew and I just hung out. My parents got here around 2 and everyone else got here around 4. Every year the Easter Bunny comes back after nap and leaves eggs all around our yard. Drew and Stephanie have gone on an Easter Egg hunt every year together since they were born. It was so great to have Natalie and Rylee tagging along this year. After the hunt the Tedds had dinner here with us. All we did was BBQ. It was layed back, relaxing and fun.

Monday we had to go to Tampa to pick up some food for Rylee so we decided to go to Lowery park zoo since the passes my Mother got us would run out at the end of the month. We love this zoo, perfect for the kids. Rylee got so excited to feed the fish and goats. Drew had is normal fun of riding the camel, feeding the giraffe, goats, fish and riding the horse. My parents left to go home and Robyn and I went to the hotel with the kids for a quick nap and and dip in the really cool kids pool. I was worried about the hotel room because my kids always have their own room. It went surprisingly well.

Tuesday we were suppose to go to Busch Gardens, Robyn had bought passes for Drew and I for our birthdays. We woke up to pooring rain, thundering and lightening. Not a good day for BG's. Go figure, it has not rained in FL for months. Time for plan B, aquarium and Friendly's. We have no Friendly's around here so we took Drew to one off 75 on the way home. It all worked out fine since Rylee was miserable from her tube.

Wednesday we went Tumblin Tot's to burn off some energy. It's an indoor gymnastics place and the kids get to run around like nut balls.

Thursday was a little bit of a messed up day. We were suppose to have a playdate that got CX'd. This made for a somewhat long morning. We had to stay home because we finally hired a cleaning person. I guess I realize after two years that Roxanne is not coming back:( I have put it off long enough. I hate having a cleaning person, for whatever reason it makes me feel weird. I should be able to do it. I pride myself in the fact that I have been doing it for two years with a sick child, two bad legs, bad back and one bad hip. I know so many people who don't have half those issues and still have a cleaning person. No offense to those people they do what works best for them but I'm just happy that I did do it. Unfortunately with all of Rylee's apts and my recent leg injury it has become increasingly difficult to do the major things. The jury is still out if I will keep her or not. I don't know if I was not totally happy with her job or if it was just because she's not Roxanne. I will give her a few more trys before I figure that one out.

Friday James had Daddy time with Rylee and Drew, my Mom and I met Rhoda, Amber and Mattie at the beach. They had a great time. I love that we live so close to the beaches.

Saturday is soccer day. Drew played a great game. He just needs more confidence.

That brings us today, last day off. We are going to shell point. They have a great 2 mile walk along the water. We always see tons of dolphins and manatees. I can't wait, love going there and it has been a long time, probably close to a year.

Tomorrow back to school. Had a blast, wonder what the summer will bring.

Super Duper Trooper.

Last Monday Rylee had a muscle biopsy and a larynoscopy. We had to be there by 7:30 and surgery was delayed for a few hours. Not Good!!!! That means a few extra hours of trying to keep her happy, eek. Thankfully everyone knows us and knows how she is and trys really hard to make it as comfortable as possible. After a while of crankiness she gave up and just layed on me. I love those moments when she just lets go and is all lovey on me. Finally we were taken back and I had to hand her over. One of the hardest things a parent will have to do. Giving her to someone I don't really know trusting that they will return her to me just fine, so hard. Off to family waiting I went. I sat there just pondering how we got to where we are and wondering how we will ever get out. Rylee has been through so much and I just want a happy ending. She came out of surgery ok. We had to spend the night because she always has some sort of reaction afterwards. All in all she did well. The incision is a little bigger then I expected and she wouldn't walk the rest of the week but all in all not so bad. Now we just wait! Ha, I'm so not good at waiting, not a patient person. This will be a test for me. It amazes me how Rylee takes the punches and keeps going. She is a fighter and I admire and adore her for it.

The story of our lives!

Two weeks after Disney we had Drew's birthday party. All year long we have been hearing about how he wanted a pony at his party giving rides. The entire party was based around the damn pony and the party had to be changed do to a schedule conflict and we had to find a new Pony. I was so happy that we had one coming and not only would there be a pony but goats, ferrets and bunnies to pet too. I totally go over board for Drew's birthday because of everything else going on. This is all about him. Pony is suppose to arrive at 12:30 well 12:30 comes and goes, 1:00 comes and goes. James and I are furious and we have one very upset little boy. We are frantically calling with no answer, are you freakin kidding me!!! Finally the guy calls and he is in the hospital. They were in an accident on the way here and the driver was in the hospital and the pony is DEAD!!!! No, really this not a lie, although it did cross our minds but we requested the accident report. This is just how our life rolls. If it's crazy and nuts it happens to us. Oh well it adds color to our life. After a few meltdowns and "I hate my birhtday party" moments all was fine. I felt awful for Drew though. I just wanted him to have this for him and it be perfect.