Time is flying and I haven’t updated this blog in over a month because we’ve been busy doing just regular stuff. There isn’t much to report either except that Geneva is doing great! She turned 5 months. She’s happy and such a good baby. She’s very interested in what’s going on around her, and therefore I think may be the reason why she’s not napping much, but she still sleeps about 10 hours straight at night.
Her 4 month checkup with the pediatrician went fine and we also saw doctor Skotko and team at the Mass General Down syndrome clinic who thought she looked great. The other team members we saw on that day at the clinic were a nutritionist to talk about starting solids, which I cannot believe we’re at that point already. We won’t start for another few weeks though. Feeding is going great as it is so I’m not ready to change anything just yet. The other team member we saw was a physical therapist who thought Gigi looked good too but said that early intervention should be providing a therapist weekly instead of every other week, so last week we saw a PT at our house. Now we have an occupational therapist every other week and a physical therapist on the other weeks, therefore we now do weekly therapy appointments at home. All of the therapists we have seen say that Gigi is slightly delayed but not much. She’s really getting the hang of holding her head up so now we are using the Bumbo and a play seat for small periods of time, just for a change of scenery.
I must mention one of the most important members of Dr. Skotko’s team, Ben, who is a young man in his 20’s with Down syndrome. He speaks with us at every appointment, small talk. Brendan and he like to talk sports and Ben usually tells me what he’s up to for the week. He works at the clinic bringing patients to their rooms and talking with parents. He also busses tables, I believe, at a restaurant. His third job is grounds crew at Fenway Park. He lives with friends downtown and on the day we saw him was planning on attending the annual Massachusetts Down Syndrome Congress’ conference that weekend and then going that evening to his parents’ house for dinner with his girlfriend. We think Ben is amazing and maybe next time I can get a picture of him with Gigi.
Dr. Skotko will see Gigi again when she turns 8 months. At that appointment she will have her hearing and vision checked. At this point we have no vision or hearing concerns. She will have bloodwork to check her thyroid at 6 months since thyroid issues are a possibility. Finally, Dr. Skotko told us to look out for infantile spasms which are a type of seizure that he says happens in 10-20% of babies with Down children, which if not treated can lead to developmental delays. He told us to watch the video on this blog to get familiar with what they look like. The good news is that all of these potential medical issues are treatable.
In other news we attended our first Down syndrome community event which was a playgroup hosted by the Massachusetts Down Syndrome Congress where we met other parents and children 3 and under. This was really my first experience meeting and interacting with other individuals with Down syndrome other than speaking with Ben. Hard to believe it took this long to have any interaction, and I was worried about how I would feel once I got there and what the children would be like, but I forgot all about it once I arrived. The kids were adorable and made me excited for when Gigi get a little older. I also met a friend I have been speaking with online, Courtney, and her 2-year-old daughter. She would check in periodically during my pregnancy and answer any questions that I had. Seeing pictures and videos of her daughter on Facebook during my pregnancy were educational for me and helped to calm my fears. I met her through the Down Syndrome Diagnosis Network.
The event we did not attend was the annual conference I mentioned above, hosted by the Massachusetts Down Syndrome Congress. We debated going and then in the end decided against it, one reason being that Gigi is still an infant and the conference will happen again next year. I posed the question on one of my online support groups regarding whether or not this would be something to attend at this stage and here was one response:
There are many vendors and other parents who roam halls during workshops taking place that may not fit their needs. I deal with many families after the conference who come away a bit sad or have a hard time. Some folks aren’t ready to hear about topics that may not relate to them and get very overwhelmed. Some folks have a hard time with seeing and being around the young adults with DS who participate. There are many families whose older kids come for their own set of workshops. It may be too soon. Some folks aren’t ready to see that. I remind folks that this is not a crystal ball to your future. Babies today have a significant increase in resources, education, etc that folks at even 16 didn’t have. Your child’s future will be your child’s future but just think to yourself if you are ready to see older kids and not feel a bit sensitive about it, are you ready to listen about things you may not want to really think about now. You have such a little one…there are great ways to connect and network other than the conference at this time. Think what is best for you and don’t feel at all if you DON’T go you are missing out at all. It all comes in time and next year, you may jump right into many workshops. If you feel you are ready, then join in and know that if things get too much that day, just back up and go shop for toys or roam around and mingle with the other little ones who will be there! Good luck with your new baby!
Others agreed with this mom’s response. This definitely made me think about things. In the end, we would have gone and just left if it got overwhelming, but logistically it wasn’t going to work that day so maybe next year.
As for the big sisters, they’re doing great as well and are loving Gigi even more because she’s more interactive,
she likes to listen to them when they read,
and she pulls their hair, which they think is funny. She is no doubt the entertainment for our family these days.