The lady from ECI came today. This is the person who will be coordinating all of Daniel's therapies. Her name is Vicki and she was very nice. Today was just a paperwork visit, so I signed my name a whole bunch of times, mainly. Sadly, just because of Daniel's DS diagnosis, he automatically "failed" hearing, vision, and nutritional screenings without actually being screened.
Luckily we are pretty confident things are going okay with his hearing (passed newborn hearing screen) and nutrition (obviously since he's gaining so well).
I have a few concerns about his vision, but he looks at lights and black and white pictures, and he can make eye contact, so I know he can see something. I'm just not sure how well he is seeing or how far he can see. I also see some indications that he may have nystagmus. This is associated with Down syndrome and does not necessarily mean anything horrible, but I'm worried. I have a feeling we'll be seeing a pediatric opthamologist sooner rather than later (and in fact I am calling his pediatrician tomorrow about this). I found out today that babies this young CAN wear glasses and they do make them that small. So we'll see what happens. This is hard for me to write about since I'm pretty worried for his eyes, but I'm trying to be honest here!
Speaking of his eyes, he also seems to have heterochromia iridium. My friend Karen was kind enough to take this detailed picture of his eyes so other people can see it. His left eye is about 3/4 brown and 1/4 blue. His right eye is blue. This does not run in either of our families to my knowledge, so I guess it is just random. Daniel is a very genetically diverse baby. :-) From what I've read this is probably (hopefully) not a medical issue for him, but it will be one more thing for an opthamologist to check out.
As far as the rest of us go, we are doing well! My mom and I took Lily to get her 3 year old pictures taken today at a portrait studio. I enjoy this day every year. When I was growing up my Grandmother (Sylvelyn, for those of you who knew her) took me to buy a dress and get my picture taken every year until we moved to Pakistan. I am loving carrying on that tradition with my Mom and Lily, and hopefully Daniel next year too. Some of you will be receiving pictures in the mail! They turned out really awesome and I am so excited to get them sent out.
We are also gearing up for Lily's birthday party next weekend (the 28th). She very much enjoyed the Brave movie, so I think the party theme will involve Merida and her friends somehow. She has already had a few presents arrive in the mail and she is waiting with bated breath to open them on her birthday. We are allowing her to open a few on her actual birthday, the 25th.
|"Take my picture Mommy!"|
The latest on me (Elicia) is that I have joined Weight Watchers Online. I got within about 10 lbs of my goal weight after Lily was born and couldn't really get much lower than that, so I feel like I need help this time around. They have a program for nursing mothers, so I can make sure I am getting enough calories to produce enough milk for Daniel, while still losing weight. My goal weight is 135 lbs. The day we got married I weighed about 125 (at 5'7" that is actually a little low for me), so I think 135 is a reasonable goal for me right now as a mommy. No, I'm not going to tell you what I weigh currently!!!
|Daniel squinting his eyes at the sun while Mommy and Kirby get some exercise.|
We do have a few prayer requests for those of you who would be willing to pray for us:
- For Daniel's eyes and eyesight.
- We have an appointment with a pediatric cardiologist next Thursday to check on Daniel's heart. We're asking for specific prayers that all of the small holes in his heart have closed completely. I'm not sure if we'll actually be having an echocardiogram that day or not, but I'll keep you updated.
- For Daniel's actual first ECI evaluation next week. They will be testing him to see if he is developing appropriately for his age. He seems to be doing okay so far, but I'm still nervous. Parents never want to hear that their children are delayed in any way, though I know with him this is inevitable eventually. I need prayers for some emotional fortitude for these visits!
I will probably try to update again by early next week. I hope you all have a wonderful rest of the week and weekend!
|Snuggling up for a nap (in his crib!) with a blankie from Uncle Justin. :-)|