Thanksgiving:)

Ok, so it's really hard to put this day into words. Thanksgiving means more to us now then it has in the past. I know it shouldn't, and we should never have taken anything for granted but lets face it, we all do, I still do. I wanted to spend this day with family. I wanted everyone to sit and watch my kids play, yes kids. Not just one but 2, our beautiful, loving, full of energy son and our strong willed pint size 21 month old who is here. She, is here:) It has been a long hard road but on this day we were just us hanging out loving life. We were so lucky to have had my Aunt and Uncle come into town. Drew was beyond stoked that they were coming, very cute. I really wanted this day to be upbeat but while we were all siting to eat, it dawned on me that she may never have a Holiday meal with us. How awful for her to have to watch us and never be able to eat with us. I can't fathom that. I don't want her to have to live that way. I tried not to think about it but it was with me the rest of the night. I also realized I can't change it so I needed to be thankful for their, laughter, smiles, tears, tantrums, attitudes. You see most people complain about the bad days. Don't get me wrong, I do to but I also remind myself that all of it makes my children who they are and they are pretty special people. Love your family, hug them a little more, kiss them more, tell them you love them more. Don't take the small things for granted because no one knows what tomorrow will bring. The day did not go as I planed in a few different ways but we were all here together and that's all that matters. I love my family and was so happy to spend the day with them even if Drew spent the entire day in his PJ's. Like father like son:)

Thank you to everyone who stopped by to see us. No words were needed but we know why you were here. For all the people that called, thank you. I'm sorry we did not answer the phone but we decided that we didn't want to waste the day talking on the phone and not being present with our family. Your thoughts, prayers and love were much appreciated.

Keeping you up to date:) Or at least I'm trying to.

Friday went well but Rylee is miserable. I know this will pass but for now it's no fun. I'm so tired of her always feeling like crap. James and I were talking about it this weekend and what's the worst part for us is that we feel like she probably has never had a day where she feels great. How awful that at 21 months old she has never not been sick. Please don't take things for granted especially this time of year. Cherish what you have, we do, and look what our lives are like. She now has a GJ tube with a tube going to her stomach to vent her when she starts to vomit. We talked about the whole swallowing issue. The thought is that it's a mitochondrial disease. We will know more when we see the neurologist. I guess if it was something simple or a gastro issue she would get better not worse. It usually becomes a neuro issue when there are signs and symptoms that worsen as they are in her case. She will most likely have to have a muscle biopsy, NOT FUN!!!!! I really don't want to have to do this, it is painful!! So this is where we are at. She probably won't be able to ever eat by mouth, not sure how I feel about this yet besides crushed. Drew went with us this time and he was so happy. It was comforting for him to be with us.

While we were away my Mom cleaned our house from top to bottom, THANK YOU!!! We lost
the best cleaning person/friend ever just about 2 years ago and have not been able to find anyone we are comfortable with since. We finally hired someone because there is no way I can do everything with 2 bad legs and she canceled, we miss Roxanne.

Have a great week everyone,
Janet

All over the place.

This post will be a little bit about everything.

So Sunday Mom moved in with us for a bit. This is hard for me. I love my Mom, love that she is here to help but I hate that kind of help. It's not a personal thing at all. If my Mom just moved in for no reason I would be fine. The deal is she moved in because once again my life is turned upside down due to my leg or should I say both of my legs. You don't go through what I go through with my leg with out any emotional scarring. Don't get me wrong, I have a GREAT life but this event in my life changed me. For the most part it changed me for the good but it also left it's negative mark. I don't want to need people. I needed people for so long. When I can't walk, drive, be independent it brings me back to a place that I don't want to go. I hope to be driving in the next few days. With all of this said I do appreciate what everyone has done. So James thanks for loving me through everything, Mom for giving up your life to help with mine. I love you and appreciate everything you do for us. Sean and Dad for just being there. Andy and Sean for dealing with cars. Andy you have no idea how hard it was to call you and ask for help, thanks. To everyone who offers to help and I say "no we are ok" thanks for the offer. Sometimes the offer means more then the action of doing something. I will know in the next few weeks what will happen with my leg.

Outside of that stuff it has been a pretty good week. We spent the entire week at home. No Tampa for us this week. It was a welcome break for all. I got to chaperone Drew's class trip. He was so excited. He had one the week before and I had to cancel on him to be with Rylee. Rylee was ok this week as long as I held her, she was not feeling to well. We spent Saturday morning with the Andersen's and then went to Jason's party. Rylee was having a much better day and had fun most of the day. She even let my MIL hold her briefly. Both kids had a great day. I was going to go out to dinner with Robyn and her Dad and James was going to put the kids to bed but Drew was not to thrilled, he wanted me home. I decided as a nice treat for him I would ask him if he wanted to join us. He was thrilled, it made his day. It was something special for him and I.

Rylee will be having a procedure done on Friday so we will head up to Tampa on Thursday. I have a good feeling about this so please pray for her. I know she will always be sick. I just want to be at a spot where are managing everything and not always going in and out of ACH.

Hope everyone one is well,
Janet

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:)