Toddler talk and swallow studies

 

 

Recently, Michael located some old pictures and videos that we hadn't seen in quite some time.  There were photos of Bridget willingly smiling at the camera (not on Live where I try to screenshot a picture of her adorable, contagious smile).  There were recordings (that we watched over and over again) revealing her tiny toddler voice.  She was stating animal names and the sounds that they make, counting, and even mentioning things around her like the basketball game that happened to be on TV at the moment.  Every time I catch a glimpse of an old video I am in awe of her voice.  It almost knocks me off my feet to remember that she once was able to talk, saying a few words at a time even!  One video in particular struck me so deeply that I posted it on social media.  In the video she said, "love you, bye".

I can truthfully say that I have watched that video over a hundred times since last week.  I would find myself feeding Greta, watching Luke play, and cuddled up on the couch with Bridget while watching it on a loop.  There are so many reasons why this video will forever be cherished by us.  For one, being able to hear her say that she loves us, is something we have deeply missed in our household.  We have tried, and tried, even to the point where I am almost shouting it into her ear (due to her moderate hearing loss) hoping that it will click and she will recognize those unfamiliar words, and somehow whisper them back to me.  Something else that shocked our systems, was the fact that Luke couldn't comprehend why Bridget WAS talking.  After watching some of the videos he asked, "Bridget's talking?".  There is no way that we can break it down enough to explain the true nature of what is going on with his beloved older sister.  Instead, Michael jumped in and took the lead to explain that, "Bridget is sick so she cannot talk like that anymore".  I cannot explain how deflating it is to realize that he never got the chance to have a conversation with his older sister.

The other realization that I had was how many people reached out to me after posting the video, asking if she is able to speak at all anymore.  I know that I can be pretty tight lipped about Bridget and what goes on from day to day in our household. Plus I suppose it is just very difficult for me to talk about, but no, Bridget does not talk anymore.  She may randomly, once in a blue moon, mumble something that resembles a word, but that is about it.  I haven't heard her say "mom" in months (sometimes I do get the "m" sound though).  She will say "da" every once in a great while referring to Michael.  We catch her trying to mouth what we are saying when we sing to her.  The majority of the sounds that we hear from Bridget now are what I can only describe as happy little grunts and giggles.  Thank God for her larger than life smile.  We can always tell how she is feeling by her facial expressions since we no longer have her words.  When people say to "take the videos" and "take the photos"...for real....do it.  That was one of the biggest pieces of advice I took (other than medical tips) from other Sanfilippo moms. 

 

As far as updates go, there are good days and bad.  We have been quite concerned with Bridget's eating lately (school as well), so after our last IEP meeting and chatting with her "team", we decided to push forward with another swallow study. Observations that we made prior to this study, were the length at which it takes Bridget to eat now.  If you knew Bridget in her younger years, you would recall how quickly she could wolf down snacks and meals.  She has taken a turn and slowed her pace dramatically, often "hiding" or leaving food in her cheeks, stuck in her throat, even choking on water that she drinks.  Certain foods have become too challenging for her now, so the study was able to provide us with advice on how to move forward.  Obviously, with her disorder, she will continue to regress in all aspects of her life (feeding, mobility, etc.), but the information that they gave to us we can utilize at home as well as school and try to maintain her eating on her own for as long as possible.  So for now, we will change up our feeding methods with her, and put off any g-tube situation for the time-being .  I know that they prefer doing that when a child is healthy and before it is actually medically necessary to give everyone time to adjust to it. A highlight of the swallow study appointment, however, is that Michael said Bridget was an absolute angel at the appointment.  He shared that the doctor took her time, shared a variety of tips, and was wonderful in regards to Bridget's needs.  

As far as tough days, the difficult part is that you just don't know when they are going to strike.  I walked into Bridget and Luke's room this morning and it was one of those days where Bridget seemingly forgot how to walk.  It's like her brain just can't fire off the signals to her legs to make them move.  We often find ourselves needing to stretch her due to her tightening joints and ligaments, but the lack of mobility lasted the length of the day today.  Not even her leg braces appeared to make a difference.  Of course this leads to other issues like when Bridget does make it up onto her feet, then we have to worry about any obstacles in her way that could allow her to trip and fall easier. I wish there was a way to adequately describe the fear that this causes in Michael and myself.  Luke is now even aware of things that may be dangerous in regard to Bridget.  He came screaming at me in the kitchen when he found her standing at the top of the stairs (about 5 feet from me) because he knows that she could easily fall down.  That is a lot on a little 2 1/2 year olds plate.  

So there you have it.  We are forever on the decline.  I wish that I had more positives to share.  I guess for now we will be grateful for Bridget's happiness and ability to still eat (somewhat) on her own.  Thank you to everyone who genuinely cares about Bridget and her story.  To know her, is to love her.