We've had support and messages from so many people from so many different periods in our life and every message, note, text has meant the world to us. When I first decided to start journaling Riley's story it was more because I knew I didn't want to forget what we were going through and even more so that our extended network of family and friends could keep up on what was going on with Riley. What I didn't know was the impact it would have on us as parents struggling to make it to the next day. The impact a simple message or call would have on pushing us through the darkest moments and the impact a note leading us to something we may have missed or not realized would have on us.
The other night, I finally looked up a documentary that one of my sorority sister's so sweetly wrote me about. It happened to be on HBO and when Dave did a quick search the other night we found that it would be airing at 9pm so we scheduled it to record.
Miss You Can Do IT
As the night progressed it just so happened that Riley was ready to be held and snuggled at around 915 which meant we could watch "Miss You Can Do It" together. I cried ugly tears through the entire show. I laughed. I kissed Riley. I told her she would be there one day. And I felt a weird sense of calm. Seeing these young girls with CP , and Abbey Curran who won Miss Iowa in 2008 as a young woman with CP, I cried and yet, felt hopeful.
These young girls were all beautiful in their own ways and Abbey has made sure they have a place to be celebrated. There are good people in this world. Riley will be ok. She has a network of family and friends that LOVE her NO MATTER WHAT and really that is all that matters. But, conversely she will also have opportunities like the Miss You Can Do It pageant because there are people in this world that don't discount children/adults because of their disabilities, instead they enourage them and their talents and always recognize them as human freaking beings. I cried because I want Riley to always know she is respected and always know that we as her parents are here to give her the world. Just as we would do if she hadn't been sick. The documentary is still airing on HBO and I hope if you have a chance to watch it you are as touched as I was.
Riley had a good week with a few set backs or rather hiccups. Tuesday Riley was able to get her botox shots and she took them like a champ. Just a little bit of crying but, nothing too bad. Uncle B-Rad was also in town and came to visit and have dinner with us. He was out to finalize clean up of their house which means we are super close to my brother, sil, niece and nephew moving back home! I can not wait! I am so anxious to snuggle baby Luke and squeeze Miss Molly! August 14th can't come soon enough!
Patiently waiting for botx. So relaxed.
A hello hug from Uncle Brad
Wednesday Riley had a great PT session and once I am able to upload some of the videos I took I'll be able to share what she is doing. To see her roll and pull her head up on her own is encouraging.
Thursday we headed to the GI clinic at CHOC to have Riley's GI tube changed. It had been over filled and was difficult to pull out so the call was made to have it done in clinic. Thankfully, all went well and we were able to head over to the Radiology department to schedule Riley's MRI right after. The MRI will be looking at her ears specifically to see what damage has been done and provide the surgeon a map if Riley still is a candidate for the cochlear implants.
Sweet snuggles with daddy
Friday at PT we met with the rep from the DME company that had a stander for Riley. I never knew what this was before a little research but, Riley LOVED it! This apparatus will help Riley "stand up" and she tolerated it so well. Hopefully, we can get our insurance to approve it sooner rather then later. For now we are using a loaner stander. We also ordered a bath seat for Riley and the rep informed me that we could use it in the pool as well. Because of Riley's trach we have to be really careful with bodies of water. I think if we can figure out how to use the bath seat in the pool Riley will love it. It's no fun being inside while everyone else is enjoying the pool!
Getting strapped in
All set up!
We had a calm weekend and Riley had lots of snuggle time. We're becoming a bit concerned about seizure activity and what constitutes a seizure or what type of seizure would be concerning. I have a call in to Riley's nuerologist to see if we should see him sooner and my gut is telling me to ask for an EEG. I am hoping and praying that if these are seizures they aren't causing any new damage and that they can be regulated with a meds adjustment. We knew they were inevitable but hearing my baby is having a seizure is stressful.
Testing the stander out at home.
Mason was very curious about Riley's new accesory
Riley's days are crazy. There is no certainty in Riley's life. All we know is that we are doing whatever we can to provide her with what she needs. As a family that is all we can do. Life is what it is and sometimes you learn you have to roll with it and change what you do to accomadate what the world throws at you. With all of that being said we continue to believe in our pretty pretty princess. And we Fight On.
Dave, Megan, Logan, Mason and Courageous Riley