So we're now in countdown mode with 2 weeks left until we go home. We're excited but, nervous. We also have tons to do before Riley gets back home! There just never seems to be enough hours in the day to get it all done. We'll be ready one way or another though.
The thought of being under one roof again and being back together as a family makes all of the worries go away even if it is just temporary. When I look back on the last 2 1/2 months life has been such a blur and been so crazy. It will be nice to not have to pack a bag every other day, sleep in our own bed every night and just be together.
Our new normal will figure it's self out I am sure and pretty soon I' hope to be telling you all how happy we are to be together again.
Logistically, there are a bunch of pieces to the get Riley home puzzle and I worry that we're going to miss a piece. The ball is rolling for nursing care, therapy services and medical equipment. We're still waiting to hear what we are approved for. The wait is killing us. Please send your prayers and good thoughts that we get what we asked for. Riley needs it and we need it.
Riley has been having good and bad days. They attempted to switch her to pediasure for her feeds. That was a big time fail. Monday early morning with Dave she threw up her feed. Then Monday early evening while I was with her she threw up her feed again. There is nothing scarier then seeing the monitor dsat while your child is puking and you're trying to stay calm and remember what to do in this situation. Riley has only ever thrown up a handful of times, when she first got sick the day after Christmas. This is how we knew it was her feeds. She topped the puking episodes off with one last occurrence early Tuesday morning. It was at that time that our wonderful nurse S spoke with the nutritionist and switched her back to her regular formula enfamil gentlease. Thankfully, she's been puke free since so hopefully, Riley will be more comfortable now.
We're noticing that Riley is much more aware now. It's a great thing but, due to being more aware she gets upset much easier. The door to her room makes a certain creaking sound when it opens and she now knows when the nurses or RT's are coming in to mess with her. She's also just frustrated. We can tell her little brain is working overtime. She has had a few episodes of what is called a neuro storm. They are hard to watch because nothing will calm her down. Hopefully, these are occurring as she is healing. I've noticed that as she starts to do something new she will start to have these again. Makes sense when I realize she is now more aware.
Saturday, I brought the boys down with me to see Riley and do the trade off with Dave. Usually, Riley is pretty calm while they are here. Unfortunately, their presence made her pretty upset. I know it's because she wants so desperately to be able to play with them. Hopefully, this is a good sign that she has the motivation to get back to playing with her brothers. It's so sad watching her frustration and seeing the confusion in Mason's eyes that sissy can't play with him.
Sunday, while Dave was with Riley, I was able to take the boys to Donovan's birthday party. It was a great way to spend St. Patrick's day and Logan had so much fun playing with Gavin and the older boys. I think he fails to remember he is 4 sometimes especially when he is around older boys. Donovan and Gavin are my friend Erica's boys and seeing our kids play together is really neat. We've been friends since high school. Never in a million years if you'd asked us back when we'd ditch school for bagels if we'd have kids who would play together would we have imagined we would.
Happy 3rd Birthday baby Donovan! (That's Logan's name for him and I don't think he'll ever lose that title)
Yesterday Riley was fitted for full leg braces. When Riley tones she usually does it the most in her legs. If you are able to break the toning by bending her legs she is much more comfortable. Toning is just a part of the process but, we want to make sure that Riley doesn't do any long term harm to her joints etc. so the braces are going to be essential to help her through this stage. This afternoon they dropped off her new leg braces. When Dave sent me the picture he called her "Robo Riley". I'm just happy that the technology and resources are available to get Riley the help that she needs.
(Riley has quite crazy hair these days as you can see in this picture!)
Tomorrow is Riley's GI day back at CHOC. She'll go again via ambulance and have an outpatient procedure to put in her mickey button. She'll also have an endoscopy and ph probe done. We're hoping the procedures are fast and that Riley tolerates them! CHOC opened a new building the day after we left so we're looking forward to seeing the new outpatient floor. We'll update tomorrow after all is done and we are back at Healthbridge.
Thank you again for all of your prayers, well wishes, thoughts and messages. When we're down we turn to these to help get us through the day. As we've encountered people who don't know Riley's story we've realized how hard it is to relive how we got to this point. We wish our baby girl didn't have to endure so much but, we believe in her and know that the support she's getting is helping to get her (and us) through each day.
Dave, Megan, Logan, Mason and Courageous "robo" Riley!