A little update from our house. Lila had an x-ray the other day showing that her adenoids and tonsils are both over 80% enlarged. Looks like she'll be getting tonsils and adenoids out, tubes in. June 10th. The good news? No AAI! We are very relieved about this.

Lila had a good day today. I kept her home for a little while this morning to keep an eye on her, then took her to school a little late. She was so excited when I brought her into the classroom. She crawled right into the middle of the circle. It's such a wonderful feeling knowing that she loves school. We have been so blessed this year; she has such good teachers and therapists. I'm feeling a little melancholy as school is almost out. The last day of school is June 19th but since her procedure is on June 10th her last day of school will probably be June 9th. Maybe she'll be feeling well enough on the 19th to go in and say goodbye to everyone.

When I picked her up from school the teachers reported that she had a great day, she just didn't eat very much. We came home, she ate well, then we went to speech therapy. We had a good speech therapy session with good cooperation and a lot of words/sounds. : ) When we were leaving I saw her OT. She had a few minutes so I told her about Lila's meltdown yesterday. I asked her if she thought that Lila was over-stimulated with the combination of being in the rice/bean sensory bin and having physical therapy. In her opinion that's exactly what happened. She told me that she had just finished Lila's evaluation and hadn't even given her a score due to her severe sensory issues. We are doing brushing and joint approximation therapy at home- hopefully it will help. It seems we have a long road ahead.

When Nick got home we went over the entire OT evaluation- about 4 pages long- and learned all about Lila's sensory issues. And that's why we go to therapy. How in the world did she see all of that in 2 separate 1 hour sessions? I have absolutely no idea but she did. Some of Lila's issues we were aware of but most of them we were not. I think Nick was expecting me to have a little meltdown myself but I just said- "Well, at least we're getting her some help. One day at a time." And I meant that. For the most part. But it's still bugging me. How could we not have known some of this stuff? I don't know. We're not experts, that's for sure. How do you know, though, what you should just accept because your daughter has Down Syndrome? It's interesting, looking back at when Lila was a baby. It seems that, just like most kids with Down Syndrome, the big delays happen later. And that's probably a good thing. You have time to just love your baby and bond with them. Maybe you even try to convince yourself that your baby won't be as delayed as other kids with Down Syndrome. And for some kids that might be true. Looking around our support group, at the kids that are about Lila's age, I can only think of one kid that doesn't have a significant delay in at least one area. For most of the kids the delay is in speech. For Lila it's gross motor and sensory issues. She's doing pretty well in the speech department, but that's it. I'm not complaining, just observing. It's just life. And the fact of life is, kids with Down Syndrome are delayed. No matter how you try to twist and turn it, they are delayed. But even though I'm a little down today, a little disappointed, and maybe even a little scared, I know that Lila will be fine. Because we love her. And she's a determined little thing. And we're getting her the help she needs and deserves. And, like I told Nick, we'll take it one day at a time.



P.S. Last but definitely not least, my sister Brenda is in the hospital. She had a high fever today and her counts were dangerously low so they admitted her. She will probably be in for a few days. The good news- just heard from my mom- she's doing better tonight. Her fever has broken. Please say a prayer for her.


  1. We do a monthly social group for our kids with DS and I see such a variance on abilities. Sydney is great with Gross/fine motor, but delayed in eating and speech. It's tough sometimes to really see those delays come through. Most days I am fine... then there are those days when I am not. I love seeing Lila and reading about her milestones.

  2. It's always a big daunting when you get new evaluation reports. When Hannah was little we made the decision to focus primarily on speech. We knew that her language abilities would make or break her adult life. She is definitely not strong in coordination (gross and fine), but her speech is coming along nicely. Lily has overcome so much already that I'm sure she'll tackle the sensory and OT issues. Keep looking at her strengths as well as her challenges. She's doing great, and so are you!