Goodness, it's been some time since I've blogged! Life has been beyond crazy so here's an update for our family, friends and followers!
In March Riley was diagnosed with PDD by one of our top hospitals in the nation, National Jewish. PDD is an autism spectrum disorder, meaning that in all major milestones and development, she is significantly behind (by about a year to 15 months) and often digresses.
In May, Riley had her G-tube put in. However, after several issues with the tube and tube malfunctions, we had a G-tube replacement surgery done in June. We also received Riley's trisomy X syndrome (the presence of an extra female chromosome in her genetics) diagnosis with genetic testing being done. We also learned of a seizure focus (a seizure spot on the brain) that is associated with her genetic disorder.
We started PT, OT and speech therapies in addition to the feeding therapy we had already been doing weekly.
In September, Riley was diagnosed with SID which is Sensory Integration Disorder. Basically, her brain is unable to relay to her body the appropriate times in which her senses should work. For example, Riley is unable to break a fall because her brain doesn't tell her she's falling. Her body awareness (what's going on around her, a sense of fear or danger, falling ect) is nearly non existent. She continues to pinch, hit, bite ect partly because she doesn't have a sense of touch as most of us do. In order for her to feel sensation, she needs to be aggressive to do it. We are currently using ankle weights at 3/4 lbs for 20 min intervals twice a day and are starting with a benik vest ( a weighted vest to wear). For kids with SID, and for Riley in particular, weight is a huge comfort when done correctly. Weight for kids like Riley provides comfort by making them feel compression and hugs without having to hug a person or sit with a person, something that is often times very very uncomfortable and unsettling for Riley. Weight brings her down from a rage, a tantrum or being very spacy and unable to settle and is a great alternative to medication.
Port was brought home from our 3rd deployment due to Riley's health and put on as XO for Rear D in September. The job change has been an adjustment but I really feel like we are thriving on Rear D because of our amazing command staff. We work alongside people that truly care about Riley and Port is at all appts with me, helping and covering down when I need him most.
In October we began hippotherapy in Black Forest. The natural movement of a horse has been shown time and time again to greatly benefit people with brain and neuro dysfunctions. I have seen Riley catch a ball, sign and do things that she is unable to do on land at this point. It is not covered by any insurance along with her ankle weights and vest but God keeps providing as the expenses pile up.
In November we saw the #1 doctor in the nation for trisomy x syndrome. She has been a huge support and a great encourager. She is our first official genetics doctor and has been very aggressive in Riley's treatment plan. While there is no known cure for any of what Riley struggles with, I am learning ways in which to improve her care, be her voice and give her more of a chance in this world. We are currently undergoing additional genetic testing to try and explain other symptoms and issues that Riley is having upon advice of her genetics doctor.
We also began with an in home nurse for Riley in November. What an unreal blessing it has been. Our services are provided by our insurance and we pay a portion each month to keep our nurse on board. It's been a bit rocky in the start of it all, a huge adjustment for me and very emotional but it's worth it and I know God is still molding me to be the mom He has designed for me to be.
Now amidst, ultrasounds for her organ check ups, clinics at Denver and daily therapies, God is working. It's all been made possible by Him!
I have my good days and my bad. I have my days where I don't need to question God, I'm ok with where Riley is, this crazy life is mine and we're making it. I also have my days where I can't stop the tears from coming, I'm mad at God, I question Him on everything, I fight those I love most, I am angry, so so angry. I keep my circle of friends close and tight. They along with Port, are the ones who see what goes on behind closed doors, who take my meltdowns, my episodes, who pick me up when I just can't take another step. They get Riley for who she is and love her as their own. I am so so very blessed by these friends. You know who you are.
I am so thankful that I am still a work. That in my grieving for our girl, my heartache, God gets it and in it all, I am still more blessed than I could have ever imagined:)
