I know it’s been a while since Lindsey and I have provided an update on Bex, so here we go!
15 month Check Up:
Bex had her 15 month check up with the pediatrician today (which also required some shots). As you are aware, Lindsey and I usually dread these appointments because we always seem to get some sort of “blah” news or another item to worry about. However, this time it went relatively well! She gained weight, grew in height, and her head circumference got bigger. While there were some small fluctuations within the percentiles, everything looked to be trending in the right direction. This was also the first time we left a well child check-up without a referral to a specialist in 9 months…woohoo! Our Pediatrician was pleased and so were we!
Bexley is learning new tricks:
Of course, our Pediatrician asked how Bexley was doing from a developmental standpoint. We relayed that she is making strides with her physical therapy and she is also learning to mimic more. While visiting my family recently in Houston, we taught her to blow kisses (sort of). Our Bexley continues to make moves at her own pace and we are very proud of her!
Connecting with Others:
Lindsey and I have recently been able to connect with parents who have a child that also experienced Infantile Spasms. Lindsey has been communicating with a mother living in a different state via email and I spoke with a father last week. To say my conversation with this dad was beneficial would be an understatement. First of all, he was a great guy and I really appreciated him taking the time to chat. Being able to talk to him about his experiences with IS and his child’s development going forward was very helpful. This was the first time I have been able to share my concerns and fears with someone who has “walked in my shoes” so to speak.
The best part was this conversation was…natural. Let me explain what I mean by that. Lindsey and I can struggle to relate to fellow parents at times because our experience with parenthood so far has been different from the norm. This is not a knock on other families, it’s just the truth. However, when I was talking with this dad, every time he shared an experience with his child I was like, “Yes, we did the same” or “Bex went through that too” or “We used the same medication.” During that conversation I felt like a regular parent, just shooting the ‘you know’ with a fellow dad. I can’t tell you how happy I felt in that moment. We are hoping to meet with this family in person in the near future.
I’m paraphrasing here, but the fellow dad gave me one really great piece of advice - “Don’t worry about the future. You don’t know what will happen…just enjoy the now.” This goes along with resolution #4 from the last blog post. I did have a moment of weakness with this resolution. We recently visited my family in Houston. At the airport on the way back, I noticed an older family whose adult son had special needs. He needed his parents’ help with ordering food and other basic life skills. For a moment, I had that quick fearful feeling – will this be Lindsey and I with Bex in the future? But then, I took a deep breath and I remembered what that father told me and our resolution. Then I looked at my daughter, picked her up, and told her I loved her and would take care of her no matter what. Also, I reminded myself that the family and son looked really happy…so I would be lucky if we turned out like them.
By the way…
In case you missed it, Lindsey and Bex were featured on the website “The Mighty.” If you want to check it out, click here.