I find myself most days unable to remember the date or the day of the week but, I can count the days we've been in this situation with Riley and also tend to count the weeks. We've been here at Healthbridge now for 3 weeks.
When I look back at when Riley transferred here from CHOC to today I know we've come a long way. Riley is more awake. She's doing new things each day and she's made progress. I wish that it were more but, I also have to realize we're moving at Riley's pace and she's setting the tone for how this goes!
Thursday, Riley tolerated the passy valve for 40 minutes while AWAKE! So happy that she can do this now! She also enjoyed the sucker the ST was giving her. Basically, it appears that she now knows that the sucker is good and she should lick it! We were also able to get the passy valve on her on Friday and she tolerated it again. Dave asked the ST yesterday if we could get clearance to use it more often. She is going to sign off on letting us use it. We will be allowed to put it on in 30 minute increments when she tolerates it. Riley opens her mouth so much now. She had it clenched closed for so long and we were very worried about that. Today when I felt around her I mouth I noticed some new teeth. She now has 4 teeth! 2 upper and 2 lower. Problem with the teeth is she now occasionally bites her tongue. We're trying to see if she'll take a pacifier but, of course she never took one before so she's not buying it. As I tried it again with her today all I could think was how ironic it was that I am trying to get my almost one year old to take a pacifier when most parents are starting to take them away!
We did OT in the room Friday. Riley did all of her stretches and was able to have some tummy time. To our amazement she was able to hold her own head up while propped on her hands. Our kids all have big heads (must be a Hopper side of the family thing/ really I think it's a McEachern thing :)) so holding her head up even when she was an infant was hard. Of course she gave me the grimace face when I went to take a picture but, we were so proud of Riley for doing this!
She has been doing so much better during PT/OT. She tolerates the time and participates which is huge! She did her PT in the therapy room yesterday and the therapist was very happy when she brought her back. We've started letting her go to PT on her own. I remember when Logan was playing indoor soccer or took a gymnastics class if I was present he'd run to me a million times and not participate as much as he would when we weren't right there. We decided to test this theory that kids do better when parents aren't present and it seems to be working. I think now that she is comfortable with all of the therapists it's good for her to do them without us there for everything.
Late afternoons seem to be a stress point for Riley. She is very awake and very alert but, still gets agitated. I tried everything the other day from rocking her to laying her on my bed with me to walking the halls and she didn't want to calm down. Finally around 5pm Riley got some Ativan and calmed. It's like having a newborn again. Riley knows what is going on more then a newborn though so she gets more frustrated and worked when she can't get comfy or has something bothering her. We really need to find ways to teach her to self soothe again.
Yesterday, Logan was able to go spend some time with his cousins. Logan loves spending time with all of them and Uncle Scott took them to a museum yesterday and then all of the boys went bowling today. When I asked him who won in bowling he told me he and Tobin did of course. I think the older cousins were nice and made him believe that! He needs these distractions and normal activities so we are so grateful to have such wonderful Aunts, Uncles and cousins who will entertain Logan!
After I dropped Logan off at Uncle Scott and Aunt Becky's yesterday I brought Mason down to see Riley. It was a beautiful day and we were able to put Mason and Riley in the stroller and actually go outside on a walk. Mason was giggly the whole time and Riley opened her eyes when she was in the shade. This was the first time in almost 2 months that Riley had been out in the fresh air and sun.
Grandpa Hopper spent the night with Riley last night and Hannah watched Mason so we could go out together for the fist time in forever. Grandpa had a bit of a rough night as Riley de-sated a few times. She never does this so who knows if the pulse ox was reading wrong or it was just an off night. We can't thank him enough for being the first to stay over with Riley and giving us some mommy/daddy time together. He's really stepped up to learn all about Riley's care and be there whenever we need him to be.
Our kids hit the jackpot with amazing grandparents. Grandma Marie found this perfect fabric for Riley and made her a blanket. The words are so fitting for Riley's situation. She also sent a bunch a clothes that are perfect for the hospital and keeping Riley stylish! My mom continues to watch Mason on Tuesday and Thursdays for us and whenever we need a helping hand. I think she enjoys the walks they take together to the store.
Today Logan came down with daddy to visit. Hannah also came to see Riley. It's really nice to see Riley recognize the people she loves and make eye contact. We know she feels the love from
Tomorrow starts birthday week. I am trying very hard to hold it together for this week. Thankfully, the staff is very concerned about how we are going to feel and wants to do anything to help us out. I'm still debating how to handle the actual day. I don't know if I want to disrupt our schedule by having Mason and Logan down Thursday evening or not. We will be having a small get together on Saturday though to celebrate. Unfortunately, we are limited with the number of people we can have so it will be mainly family and a few friends. I hope in 6 months when this phase is past us we can have a big party to celebrate the way we always wanted to. Knowing we have Riley with us for this milestone makes it easier to power through the difficulty of not having her at home with us for her birthday.
A year ago we were so nervous to be welcoming 2 babies in to our little family and had no idea what we were getting ourselves in to! I can truly say this last year has changed us forever.
Dave, Megan, Logan, Mason and Courageous Riley!