My grandmother's funeral and rosary was lovely. I was glad to see all of my extended family. Some of them hadn't met Grace. She did so well despite the later nights and missing naptime. Of course though, the nasty wind blew in which affected her oxygen levels. I almost thought we were going to have to make a run to the ER because it wouldn't stablize despite nebulizer treatments. Luckily, it finally did get to where we needed it to be by 1 a.m. and it stayed like that for the rest of the night. I'm glad I only had to do 2 treatments.
Of course, it doesn't end there. Gracie and I got up this morning. She is now into Blue's Clues as well as Yo Gabba Gabba. She watched the show as I gave her the pulmocort nebulizer treatment. We were both able to get dressed and I was able to give her meds before we left for school. I should have known that she wasn't feeling so great because she didn't fight getting buckled into the car seat (that is now our big hurdle sometimes) and she let me start the Sesame Street CD at the first song and usually we have to start our trip with Rubber Ducky. When we got to school, poor thing just threw up and threw up and threw up. I wiped her up as best as I could and we headed back home. I cleaned her up, put her in new clothes, took her temperature and she was fine. I guess it was the combination of mucous and meds doing a mambo in her belly that didn't agree with her. I took her back to school and all was well. We had a great evening and she seems to be feeling better.
So, I started thinking about Grace and all the stuff we've been through healthwise which led me to start thinking about an e-mail from my agency about waiting child and the policy that only people with LID dates could apply for children with minor special needs such as CHDs or cleft lip or palate...minor...it's the word "minor" that I'm not so sure about in the same sentence as CHD (or any other special need). I hope that people realize that even if they only want a "minor" special need, it doesn't guarantee that it will be. There could be other things related that aren't documented that the parent will have to take care of as well. Grace's SN was supposed to be moderate but in fact it's severe. We've also had other health issues related such as pulmonary issues. I just hope that when people do decide to go the special needs route to be prepared for the unexpected and that there might be a lot more to the special needs that meets the eye. Don't get me wrong. I am glad that I did go this route and I am Grace's mom. I have learned so much and have gained so much from being a parent to a special needs child. It's incredibly challenging not only because of all of the things we are currently juggling healthwise, but also because I am doing it as a single mom (with help from family and friends). I just want people to go into the experience with eyes open and not feeling like the rug was pulled out from underneath them.