My apologies for not keeping up with life with Lola. We recently found out the results from Lola’s first round of genetic testing and those results came back normal.
This should be good news, right?
Well, it should be good news and I mean it is good news, but what had me in a stricken panic all last week was what has haunted me from the very first time Lola had her first seizure…the unknowns scare the hell out of me. This news rocked me emotionally into someone I hadn’t been in a very long time.
In truth, I was a mess.
I began to Google, I sobbed uncontrollably, I looked at Lola as if she were a science experiment trying to pinpoint what exactly her diagnosis was and why it was causing her delay. Rob kindly reminded me that just because I had found the YouTube video that would help us find out Lola had West Syndrome, this did not mean I would be able to miraculously do so again. After a few days of mania, I began to realize that I have to be patient and just accept this for what it is. Many kids go their entire life without having a diagnosis hence the term “undiagnosed developmental delay”. The neurologist said Lola could just be delayed because of the seizures so early on in her life. That the decrease in white brain matter could be a result of the trauma her brain experienced while it was seizing. But in an effort to make sure we cover all unknown territory, Lola is being referred to a neurogeneticist at Riley Children’s Hospital. This doctor will take into account ALL of Lola’s symptoms and try to pinpoint specific genetic syndromes that could be a fit. The process is long and grueling and this is where my patience must kick in. The doctor is very hard to get into and the intake process alone can take weeks. After he has gone over all genetic markers, he will order specific tests in which those results can take months to get back. But the most important thing is that Lola is continuing to develop which is a good sign and these pictures are all I need to see to remind me that she’ll get there when she is ready and able. That regardless of a diagnosis, she will continue to surprise us all because she’s Lola. A very determined, smart and beautiful little girl.
In occupational therapy, we are working on taking items off and putting them on, putting items in something and then taking them out, turning pages of a book, bringing a toy to her via a string and opening and shutting things. And let me tell you, while it takes Lola more time to figure these out…once she has, sister’s skills just take off!!
In physical therapy, we are still working on Lola learning to pull to stand. You may remember, she did it twice before but has yet to do it again on her own. Her PT says Lola has the strength, she just has to learn how to put it all together. But seeing that Lola uses her feet to manipulate her environment, standing and walking might prove to be difficult. Yet over the past couple of weeks, Lola has begun to do what I call her downward facing dog pose. Oddly enough, I think this is how she’ll learn to stand up, but we just have to wait and see.
Lola is doing amazing with taking an item out of something, but putting it back in proves to be challenging for her. But if I were Lola, why would I want to let go of an awesome toy that makes noises when I manipulate it in my hand?!
Last week, Lola began speech therapy with a wonderful lady who is quite engaging with Lola. The ST will work on trying to get Lola to pronounce vowels, syllables and eventually words and sentences. She will help Lola learn what communication is and how to effectively use it. But just ask anyone who has been around Lola and they will tell you the girl communicates…it’s just in her own way. Lola will mimic sounds such as raspberries, humming, saying ahhh when brushing teeth and now she claps when we say “YEAH!”. These are all positive signs for speech and communication in the future. Yesterday the ST was impressed with Lola’s turn taking interaction meaning Lola would imitate an action after the ST did. Lola would clap when the ST was finished singing a song and she made great eye contact. The ST noted in just the second week of working with Lola, she noticed how much more Lola was using her hands rather than her feet (although sister still loves using those feet!).
So while the unknowns of a diagnosis can be a scary, a diagnosis can also put Lola in a box of what she will and will not be able to do. The unknown diagnosis can mean my kid has no limits and no boundaries of what she will be able to achieve. And even if Lola did have a diagnosis that restricted her, I would never stop teaching her to reach for the stars because I know she’ll get there eventually.