The second day in St. Petersburg was filled with more tests. Blair had a language evaluation that morning, and I thought she was unbelievably cooperative, which allowed the SLP to really get a good picture of her language.
Blair scored within normal range on both expressive and receptive language (what she says and what she understands). This is fantastic! For two years she’s had a garbled right ear and an inappropriately aided left ear and is still doing fabulously. She was below normal 6 months ago, so she has made more than 6 months progress in that time. We’re so proud of her. Dr. Berlin was thrilled with the results and very complimentary of what we are doing with Blair. That’s not saying we don’t have work to do though!
The other thing is with her speech. Her language – what she says and understands – is coming along. Her pronunciation has not gotten much better even with hard work. They have suggested that Blair may have velopharyngeal insufficiency or VPI, which would explain her nasality and inability to say some consonants like b and p. In VPI, the soft palate is not closing properly to allow pressure to build up in the mouth to make letters like b, p, g, t, and k. If you say a word beginning with p, you will notice the buildup of air in the mouth and release to make the sound. With Blair, her air comes out of the nose for many sounds that it shouldn’t. Blair can make some of these letters, and we know that her soft palate moves; it just may not move enough. Since she substitutes g for b, it suggests that she hears the letter b but cannot make it.
A child is not tested formally for VPI until age 3, so we will address that later and subsequent treatment if she has VPI. Until then, we will continue with speech therapy.
It’s not fun to hear that your child may have something else to deal with, but at this point we are thankful that a potential problem was discovered now and not later – or not at all. If she has VPI, it would explain that many of her speech issues are not hearing related. This is all great information for us, so we are happy to know it.
We also did some genetic testing. We won’t know for a while, but it’s done and we’ll at least know what we’re looking at from that standpoint. The blood draw was a not the most joyous occasion. The nurse was very good, but she looked like Blair’s Synagis nurse – she’s the one who came to the house for five months this fall/winter to give Blair two shots each time in excruciatingly slow motion. THAT was a nightmare. So Blair was on edge as soon as she saw the poor girl. It was heartbreaking to hear “Mama, help me!” as I held her still for the blood to be drawn. Thankfully the nurse was quick, and in no time Blair was talking about going home to see Gus and Buddy.
That’s about it for our trip. Thank you all for your prayers. We feel that many of our prayers have been answered and are so thankful that we were led to St. Petersburg. It was truly a wonderful experience with tears of joy instead of fear!