We came home after brunch and while Mason took a longer then usual nap we headed to the backyard to enjoy the pool and cool off from the heat! Logan has been asking for weeks now when it was going to be warm enough to swim again. It's definitely almost summer and we know we'll be spending tons of time in the backyard swimming and enjoying our family and friends. After Mason got up from his nap he got in the pool as well. He loved it! The only sadness of the afternoon was the fact that Riley couldn't join us in the pool but, we hope that one day she will. I know she would love it as much as her brother's do.
Tuesday, I sat down to finish up a pile of paperwork for State/County funding we are trying to secure for Riley. After multiple phone calls to State and County offices and shuffling through all of the paperwork over and over again I almost had a breakdown. Well, actually I did. After venting to Dave and calling my dad to get a phone number of someone I knew could help I was spent. It's very frustrating when you need answers to questions and the people that deal with the paperwork every single day can't help you out. Instead of finishing the paperwork I put it aside and finished it Wednesday knowing that the more frustrated I became the less I was going to get done. It's just one of those things and drives home the fact that we, as Riley's parents, have to be her advocate in every aspect of her life right now and we can't let our guard down. Like I told the ST's office yesterday, we are doing everything we can to make sure Riley gets all of the help she needs and we won't give up or accept anything less.
Last Friday Riley had what we hope will be her last dose of baclofen but, it's not looking like it will be that way. At least for now. We took her back to see Dr. Irwin Tuesday morning because Sunday she started to shake, mainly in her arms, and we were concerned about it being a reaction to coming off of the baclofen or something greater like a seizure. Thankfully, when she does this you can hold her arms and the shaking stops. We'll watch her for the next couple of days and see how she is doing and then be in contact with Dr. Irwin to see how to proceed. Like she said Riley does things on her own time and maybe she's just not ready to come off of the baclofen completely but, we do need to give her body a chance to see how she does without it for a few days. As always, a visit to Dr. Irwin is refreshing and nice. It's so different from other appointments that leave my stomach in knots for hours before and hours after. I also asked her about a referral to an audiologist as we don't see the ENT until mid June and she was able to get that Rx for us. We briefly discussed Riley's overall diagnosis and without going in to too much detail I left feeling much better than I had felt in the last few weeks since we saw her diagnosis in writing. It's the little things, like a couple minutes to openly discuss why things are the way they are that really set Dr. Irwin apart from many other doctors.
Yesterday we took Riley to her PT evaluation at Casa Colina. The therapist Riley worked with was wonderful! I can usually tell whether Riley likes someone or not within the first few minutes of her meeting them and she definitely was comfortable. She recommends PT 2 x week for the next 6 months. I am thrilled! I was pushing to have her seen more then 1 x week and I am happy the therapist agreed. She'll work from the top down to strengthen Riley's muscles and body. In 6 months we'll reevaluate where Riley is and then go from there. I know a ton can happen in 6 months so I am anxious to see how Riley responds to her therapies. It's like having a newborn in the sense that Riley needs to learn how to do everything all over again. Riley is already showing interest in therapy and trying to lift her head. She just doesn't have the strength quite yet to do it on her own. So goal #1 is to get Riley to lift her head during tummy time. From there they will work on getting Riley to roll from back to tummy and tummy to back etc..
This morning Riley had her second in home ST. We've requested that the ST work more specifically with Riley on swallowing and oral stimulation and it seems this weeks appointment went better then the first. All of Riley's therapies are play based so she incorporated songs and toys as well.
We're getting ready for my bff's wedding tomorrow where Logan will make his debut as a ring bearer and I'll stand beside Leane as her Matron of Honor. I am excited to see him all dressed up in his tux. He was a trooper last night at the rehearsal and dinner and hasn't stopped talking about walking down the aisle all day. It will be a wonderful day celebrating friends, family and love. We're all looking forward to it! Congrats Leane & Patrick!
Fight on!
Love,
Dave, Megan, Logan, Mason and Courageous Riley!
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