On Wednesday, April 15, Layla and I took all 3 of the boys to the Development Clinic for a 6 month check-up. We saw our nurse Kathy there, the same nurse we've had every time, and we've come to really appreciate her as she knows the boys, knows me, and is a great resource and supportive ally in our long road.
Kathy did a test called the DAYC test (DAYC stands for Developmental Assessment for Young Children). She was able to observe some of the areas of the assessment, but for others, she simply asked me about what they could or could not do/what they would or would not do. Layla and I were both able to chime in to try to answer her questions to the best of our ability. I believe this test was done based on their adjusted age, which was 16 months at the time (they were 19 months actual) since the Development Clinic has always used adjusted age in the past.
Ms. Kathy called me about a week later with the results. The way the test is scored, a 100 is an average. They take 15 points above and below zero to be considered in the average range. So, 85 - 115 is an average score. Scores < 85 are below average and scores > 115 are above average. I was not predicting that my boys would hit it out of the park or anything, but I thought Stokes and William would probably be in the mid-average range. Unfortunately, that wasn't the case.
Stokes's overall score was a 73, which is below average. Kathy explained that his speech delay had a big impact on his overall score, since it relates to so many categories, including Communication, Cognitive and Social-Emotional. He did well with his physical development but had below average scores in speech and adaptive behaviors.
Ryan's overall score was a 56, which falls into the poor range. This, of course, is not a surprise because we know he's delayed in all aspects, but it's still difficult to put a number to it and to have him labeled in the poor range. Again, I know it's realistic, but it still hurts. Each and every time it hurts. Another doctor came in during our appointment to talk in more depth about Ryan's Pachygyria diagnosis and answer any questions that I had. She told me that all Pachygyria patients need some sort of assistance throughout their life. The assistance can range from very limited (meaning someone just to help pay bills, balance a checkbook, etc.) all the way to full assistance with dressing, toileting, eating, and so forth. I'm holding out hope that Ryan will continue with his uphill developmental battle and will be one of those that needs some limited assistance! I still get upset when I hear that he will need ongoing longterm supportive services, but we will just keep taking it day by day. That's all we can do.
William's overall score was an 87, so he fell into the low average score. I was glad to see that at least one of them fell into the average range, but was just a little surprised that he was in the low end of average. He exhibited some fine motor skills weakness, but we all think this will be resolved in time.
Kathy wants all the boys to get hearing evaluations. They haven't had their hearing checked since the NICU, at which time they all passed. I know they can hear because I've notice them turning their heads toward a loud noise or turning around when their name is called, but it could be a case where their hearing is not as good as it could be. April, our Early Interventionist, is working on getting us referrals to a hearing testing facility. Hearing difficulty could be a part of Stokes's speech delay...or it could be that he just doesn't want to talk. ;)
An overview of developmental areas and appointments:
Kathy did a test called the DAYC test (DAYC stands for Developmental Assessment for Young Children). She was able to observe some of the areas of the assessment, but for others, she simply asked me about what they could or could not do/what they would or would not do. Layla and I were both able to chime in to try to answer her questions to the best of our ability. I believe this test was done based on their adjusted age, which was 16 months at the time (they were 19 months actual) since the Development Clinic has always used adjusted age in the past.
Ms. Kathy called me about a week later with the results. The way the test is scored, a 100 is an average. They take 15 points above and below zero to be considered in the average range. So, 85 - 115 is an average score. Scores < 85 are below average and scores > 115 are above average. I was not predicting that my boys would hit it out of the park or anything, but I thought Stokes and William would probably be in the mid-average range. Unfortunately, that wasn't the case.
Stokes's overall score was a 73, which is below average. Kathy explained that his speech delay had a big impact on his overall score, since it relates to so many categories, including Communication, Cognitive and Social-Emotional. He did well with his physical development but had below average scores in speech and adaptive behaviors.
Ryan's overall score was a 56, which falls into the poor range. This, of course, is not a surprise because we know he's delayed in all aspects, but it's still difficult to put a number to it and to have him labeled in the poor range. Again, I know it's realistic, but it still hurts. Each and every time it hurts. Another doctor came in during our appointment to talk in more depth about Ryan's Pachygyria diagnosis and answer any questions that I had. She told me that all Pachygyria patients need some sort of assistance throughout their life. The assistance can range from very limited (meaning someone just to help pay bills, balance a checkbook, etc.) all the way to full assistance with dressing, toileting, eating, and so forth. I'm holding out hope that Ryan will continue with his uphill developmental battle and will be one of those that needs some limited assistance! I still get upset when I hear that he will need ongoing longterm supportive services, but we will just keep taking it day by day. That's all we can do.
William's overall score was an 87, so he fell into the low average score. I was glad to see that at least one of them fell into the average range, but was just a little surprised that he was in the low end of average. He exhibited some fine motor skills weakness, but we all think this will be resolved in time.
Kathy wants all the boys to get hearing evaluations. They haven't had their hearing checked since the NICU, at which time they all passed. I know they can hear because I've notice them turning their heads toward a loud noise or turning around when their name is called, but it could be a case where their hearing is not as good as it could be. April, our Early Interventionist, is working on getting us referrals to a hearing testing facility. Hearing difficulty could be a part of Stokes's speech delay...or it could be that he just doesn't want to talk. ;)
An overview of developmental areas and appointments:
- Stokes is getting back into the BabyNet program. He tested out last fall when he was hitting his milestones for his age at the time through Early Intervention. He needs to get back in the program now to begin speech therapy. I've met with BabyNet and have done the appropriate paperwork so it's just a matter of time to get everything through the system so we can start with his speech eval and begin his weekly speech appointments.
- William has continued on in Early Intervention and also began Physical Therapy with Ashley (Ryan's PT) a few weeks ago. Ashley thinks he just needs a little help to fine tune some of his weaker areas, but that he won't need PT for very long. She's thinking maybe just a few months. A speech eval was recommended for him as well, so we'll get that done and see what the Speech Therapist thinks about whether he needs therapy.
- Ryan is still in Early Intervention, Speech Therapy, Physical Therapy and Occupational Therapy and will continue with all these therapies indefinitely.
It felt good when Stokes was released from BabyNet because he was doing everything he was supposed to be doing, and then William was close to being released from Early Intervention since he was progressing along great and doing lots of good stuff, and although Ryan has his delays, it felt like we were all moving in the right direction. Lately though it feels like we've taken a few steps back. I asked Kathy if we, as parents, are dropping the ball anywhere. I feel like I've failed them somehow. William has started PT. Stokes and William both had a speech screen and were recommended for a full evaluation. All three need their hearing checked. There was mention at the Development Clinic for Stokes to possibly get an OT eval. I guess I had hoped that there would come a day that I would stop worrying about them from a developmental standpoint. I'm coming to the realization that that day may never come. I want to be one of those moms that doesn't worry about them not saying the right number of words or taking steps by 12 months or whatever milestone we're looking at, because I know they'll get it in their own time, but I just don't think that's going to be the case for our family. There are too many appointments to go to, too many nurses, doctors and therapists looking at them and providing input and feedback. I can appreciate that. I want and need all the help I can get. But it's hard to let it roll off your back when you're hearing it from so many different sources, and of course I really shouldn't let it roll off my back, or want it to. 27 weeks is really, really early to be born. Too early. Unfortunately, that is a battle that each of them is going to have to continue to face. I know I've written about it before, but I still carry a huge amount of mom guilt for their extremely early arrival into this world. I wish my body could have done a better job of being their vessel for gestation and give them a few more weeks to grow and develop. We might not be dealing with any of these developmental issues, at least with Stokes and William. But I can't go back, I can't change anything about the past, so we'll just forge ahead. The thought of adding in a few more weekly appointments is overwhelming. It's hard enough to manage the ones that we have. But we'll figure it out. It's important for the boys and we'll make it happen. Thanks for reading my rambles here. I hope it's not too "debbie downer" and that it's not coming across as feeling sorry for myself. I'm still trying to come to terms with everything and dealing with three preemies and the issues that come along with prematurity. Hang in there with us and I ask that you will pray for each of my boys.
