Seriously Enough, MERCY!!!!!!

This has not been a great week for us. We had to tell Drew that yet again we would be going back to Tampa, not a happy camper. This is so hard for him. On Monday at Drew's soccer practice I slipped and busted my good leg really bad. I didn't want to admit how bad at first because I needed to be with Rylee. I was not about to not be with her at the hospital. I NEVER break down but in the parking lot I just fell a part. I hate to say why, but seriously WHY????? I see the ortho on Monday to see if I will need surgery. It's better but not great. The loud popping sound was not a good sign. Oh well I will get through this with Grace too. Having a fused leg makes the rest of your body take the brunt of everything and the left leg obviously had enough. I'm so grateful my Mom is here to help. I just wish she didn't have to.


Ok, on to Rylee girl. We did the 48 hours in the SMU( love this area, private rooms) She showed no signs of seizures which was great. On Friday she went for her swallow study and she scared the crap out of them. She started to do what she does to us. The test that was suppose to take 3 hours was ended in 15 minutes. She passed liquids ok but when they gave her food, it was bad. The food is getting caught in the exact area that airflow goes through. There was no air in or out and then she started to aspirate into her lungs, not good. Thank God I know she does this because the people doing the test were trying really hard to not freak in front of me. At this point she is not able to eat by mouth. I'm not really sure what happens next because the Dr's need to watch the DVD of the test. AS soon as I left the room they were on the phone with the Dr's so we should know more by early next week. They are also going to move her feeding tube to a different place in her intestines and make a 2 valve port. The hope is that we can feed her through her intestines but vent her stomach before she starts to vomit and put her zofran. She has lost over a pound in the last week.

Ok, off to get the kiddos up.

Janet

Putting this off:(

Ok, so we are back home AGAIN, but, not for long. After seeing Rylee's neurologist and having her EKG they decided we could go home for the weekend. It was really important for us to be home for Halloween. Drew was still traumatized from last year when we were in the hospital and missed it. We have to go back this week until at least Friday. She will have to be hooked up to computer monitors for the an extended EEG. They really want to pin point why she stops breathing. I will keep everyone posted the best I can. Feel free to to text me. I will text back as soon as I can. Not looking forward to this. You all know how much she dreads this and we have been up there for the last month. This to shall pass:)

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