Sunday, February 3, 2013

We're still here!

Where have we been? I promise we're still here! Riley's new facility has terrible cell service and tethering from our phones wasn't working thanks to our wonderful provider that barely gets a signal here! Anyway, Uncle Mike & Tia T saved the day with their portable hotspot that we are borrowing since we figured even if we went and added a hotspot to our existing plan it wouldn't do any good thanks to the lack of service. I've felt naked without the internet the last few days!

We are now at Healthbridge Children's Hospital in Orange. We're only a mile or so from CHOC. Riley made it over here Friday afternoon and we've been settling in since. We have a private room that is on a semi circle with 4 other rooms. The nurses, respiratory therapists and cna's that are working with all of the patients in the semi circle have desks right outside the rooms and are available immediately if needed.

The room has a cheesey Alice in Wonderland type theme to it but, it's growing on me. We've started decorating it and filling it with things from home to make Riley feel more comfy in her new abode. We have a fold out twin bed that we are able to sleep on at night so we can stay with Riley. We've already broken 2 beds. I won't say who did it but, I will say that even my teeny tiny mom almost sent the bed flying yesterday so it's not very sturdy. Unfortunately, we really don't have any other things available for us as parents. Now I am wondering why I never thought to ask when we were touring. No showers, internet etc. Today we got out while Grandpa & Grandma Hopper were here and found a 24 Hour Fitness a few blocks away. My gym membership that hasn't been used in years but,has still been paid for because it is too cheap to give up, will now come in handy! Dave was able to get an individual membership as well and we plan on working out and showering there. I think it will work out well as they offer all of the classes I love and of course they are open 24 hours so if we can't sleep we can always head to the gym to take our minds off of things.

We've taken a couple of days to get used to the new environment. I think we were all on edge after leaving CHOC and not knowing what to expect and what the future holds. We're starting to get to know the staff here and the program of how everything works. So far so good. We've learned to be more vocal and make our expectations known. Riley has had the same nurses during the day/night the last few days which has been good for her to have some familiarity with the faces that have been caring for her.

Friday afternoon Riley rested from her big move and we got settled in. Yesterday, Grammie & Pa Doug and Logan came to visit! Logan was so cute bouncing down the halls in his Team Riley shirt. He was very curious about the therapy rooms that are filled with toys and quite disapointed that he couldn't play in them. He was so sweet and gentle with Riley. His curiosity about her new accesories was very typical of a 4 year old but, he didn't seem to mind them as I had feared. We tried explaining to him beforehand what she had and also showed him pictures so he wouldn't be shocked. As I walked down the hall with him to get a snack from the vending machines we walked by a little boy in his high chair sleeping. Without skipping a beat Logan said "that baby is just lazy sleeping in his high chair". Logan didn't point out his disabilities. He didn't stop and stare, he simply stated the facts. It felt good, like we've done something right in raising Logan to understand that we are all different and that is okay. He really makes us proud on a daily basis. For a 4 year old he's handled this whole situation much better then we expected. We still make sure he has special time with both of us and we are looking forward to both being able to be home together while someone stays with Riley overnight sometime soon.

Riley had her evaluations done by all of the therapy departments yesterday and they are working to formulate a plan. She'll do each therapy ST/OT/PT 5 days a week for 30-45 minutes depending on how she tolerates it. My mom held Riley while the ST did her evaluation yesterday and it was neat to see all the techniques she used. In order to see if she still had her sense of smell she placed a tissue soaked in mint under Riley's nose. It was amazing to see her react to the new smell and settling to know she still has this sense. We had a hearing test done right before we left the hospital on Friday morning. We are pretty certain that Riley has hearing loss on one side but, will know for sure once the results are read tomorrow by the nuerologist. Thankfully, we are pretty confident that she has hearing on the other side based on her reactions to our voices and what Dave could see on the screen when the test was being administered.

Riley seems to really like it here. She may not like it after her therapies start as she will be tested and challenged to do more and more each day. She hasn't done much of anything in the past 5 weeks aside from laying in a bed so this could be interesting as she is still fesity as ever. I can tell by seeing how the staff is with the older children that they will be good for Riley though.

We've talked to the nurses and RT's and they've told us about similar cases to Riley's and the healing and miracles that have happened here. I think being at a facility like this where you are dealing with people who have had actual cases like Riley's is encouraging. It was the right time to move on from CHOC and this seems to be a good bridge between CHOC and home. Of course only time will tell but, Miss Riley has been making progress each day that shows us she's on the right path.
Hopefully, we'll know more tomorrow how long they think we will be here. It would be nice to guesstimate and plan a littl ein the future but, if not we'll continue to go with the flow.

We have so many people to thank for some very special things the last few days but, I will save it for tomorrow. I hope you all had a great weekend and enjoyed the Super Bowl. Riley always loved watching USC games with me so we had the game on this afternoon and watched football together. Not a typical Mommy/Daughter activity but, a definite Mommy/Riley activity, so it was perfect.

Dave, Megan, Logan, Mason & Courageous Riley!

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