Pumpkin Picking:)

OK, so I always miss home(NY) the most in the fall. It's my favorite season. The leaves changing, pumpkin picking, apple picking, fall festivals and cool crisp air(not cold.)Yesterday we took the kids to get their pumpkins at a church down the road. I give them credit they try to make it like a real patch but let's face it, it's a bunch of pumpkins on platforms on the church lawn. They have one small area for photo ops and that's as good as it gets. We did hear about another church that at least has hayrides, might have to try it next year. Oh well, have to take the good with the bad. WE DON'T HAVE TO DEAL WITH SNOW!!!!! and it does not get dark at 4:30. The plus is Drew and Rylee really don't know the difference because they have never experienced anything else, but Mommy and Daddy do. The kids had a good time

Next Week

We will head back to ACH on Tuesday as I know anything I will let everyone else know. Rylee not eating has it's good moments and bad ones. It's really hard for us because she's not crying this loud pissed cry it's this cry of sadness. So hard to listen to. My 20 month old should not feel sadness to that depth.

I'm posting a pictue of her walking around with a cup. She loves to roam the house holding a McDonalds cup, weird but cute.

Building Forts

So we have hit the stage of fort building. I remember doing this with my brother when we were kids. We would go downstairs and go into the boiler room where all the extra blankets and pillows were and build away. I'm sure it drove my Mom crazy because it was such a mess but it was a blast. James and I now get to do this with Drew, so much fun but it makes a MESS!!! We all know how much I love that, truly my Mothers daughter.

Ups and Downs!

Ok, so a lot has been going on the last few weeks and I can't wait to share it all but I don't have the time to write about it right now. Look for another update soon.

A few weeks ago Rylee choked and stopped breathing briefly. I had no idea why. It was quick and enormously scary. A few days later she did it again and on Saturday once again it happened. I can deal with pretty much anything but I draw the line at not breathing. I think James and I handle things well but this is to much for me. We went back to St. Pete and saw Dr. W. We are not completely sure what's happening but she is no longer allowed to eat by mouth. This will be HELL for us. Rylee loves to eat, she knows when she eats, and where her food is. This breaks my heart into a millions pieces because up until this she was finally gaining weight, looking good, happy and walking. We will now go back to endless hours of crying. God help us get through this. Tomorrow I will call her neurologist. We need to know if she is having seizures or if this is all related to her digestive system. She will go back up there in the next few days for EKG, ECG and swallow study. I will post the results
as soon as I can.

On my last post I put down all the October birthdays and I forgot my Godfathers Uncle Frank so happy belated B'day, love you and sorry.

Aunt Pat , you rock and I'm so proud of you. You went from a duck paddling with swimmies to a soaring eagle. This could not be a better month for you to kick some BIG C's ass.

Love to you all,
Janet

Back!!!!!

We are home from St. Pete. Rylee did great, Thank God. I love the Mickey button it's so much better for her and for us. She no longer has a tube hanging out of her and tied up into her diaper 24/7. We just attach the tube when she is on feedings. We still don't know totally what's going on with her and that scares me to death but we just take it one day at a time. As Dr. Jones said a few months ago when we saw him last that this is just a band aid until we can put all the pieces of the puzzle together. I really hate BAND AIDS. I'm a need to know person so this is very hard for me to except. Life is no longer the same for us. I feel as if life has stopped this past year and half. Yes, we have done lots so that everything appears normal to Drew and anyone else who sees us but I don't think I have really lived in those moments. This is our life now and I want to start enjoying it again. No, I don't know what each day will bring but each day is a gift. I want Rylee to start doing things. She has missed out on so much it breaks my heart. She is WALKING!!!! I am beyond stoked. We were not sure that it was possible but she is doing it. She is not stable and her hips are bad but she self corrects so with time I hope she will be strong enough to fix it on her own. It helps that Mommy use to rehab for a living so I have been able to work with her a lot. Speech therapy has been awesome so far and I hope it continues. I can't wait for her eat normally and talk. She has started say quack quack and ruff ruff. She has also started to sign which helps. She gets frustrated because she can't communicate so all this should help.

Drew is the best big brother. He loves his sister so much. Leaving him again was hard but he is getting better with it. I hate seeing the pain in his eyes for his sister, it is gut wrenching.

Hope everyone is having a great week, we are tyring to make the best of ours:)

Happy Birthday Cindi, Mr.A, Holly and Grandma:)

Janet