UPDATE!!!!

Wow...these past few weeks have been so busy. I am done Summer I classes (I took one online..a pre-req to my master's program...statistics..yuk, but got an A!!!). My grad class was wonderful...Issues in Development...we had issues to present...I presented CP and ROP. I will get my grade for that class today. I have a week off until Summer Session II.
Soooo, the kid's babysitter was a disaster...well that's probably overexaggerating. Anyway, it didn't work out and my mom, dad, and Edwin pitched in to cover while we waited for the kid's to be officially 2 years 9 months (Monday!!!!) so they can start daycare. It is closed for Monday and Tuesday, so they start daycare Wed at the location I work! I am excited, although nervous, but I'm sure things will go well. Everyone seems committed to accomodating the kids and of course I'll be there to ensure it!

In other news, Edwin and I went to see a perinatologist. We want more children in the future (probably 3 years..once I complete my degree and his career is hopefully bringing in the big bucks!) But I wanted to get a sense that this was a possibility, and wanted Edwin to hear it because he really feels strongly that he doesn't want another preemie. He is scared about it, and doesn't think it would be fair to S&E and I totally get that. So we had a consult and discussed what could have possibly happened last time. Of course they are not sure, but the plan will be to get P-17 injections and have internal ultrasounds to check my cervix from 13 weeks onward. If things begin to change, I will have a cerclage placed. Then at 36 weeks (because I WILL make it to 36 weeks) I will have an amnio to check lung development, and they recommend doing a c-section at this time if the lungs appear mature enough. This is because I had a classical c-section with the twins and there is a risk of uterine abruption, especially if your body goes into labor. Since Edwin and I are considering having another if this future pregnancy goes well, we obviously do not want to risk uterine abruption. But we'll see. I know how important a full 40 weeks are, and I do not want to have a section at 36 weeks if I do not 100% have to. That is something I'll look further into. But it feels good to have a plan, and to know that more children are a possibility for us. But again, this is a few years away!

Serena and Edwin are going great. They mature more and more every day, and I can't emphasize enough how the nice weather, the back yard, and our home has made such a positive impact on their development. I am so happy with the way things are going, and it's such an amazing thing to see them so incredibly happy. Yesterday the weather was perfect and we were outside for four hours straight (with sun screen lol) and the kids played in the kiddie pool, in their little outdoor house, in the sandbox, in the grass, ate hot dogs and cheese puffs outside and I was just so thrilled to have those experiences with them...to savor those moments. We are truly blessed.
Speaking of which we went to the NICU to visit on Friday. We were able to see some of the many nurses that cared for S&E throughout their 122 day stay. We also saw 2 neonatologists as well. Everyone was impressed and happy to see them playing, smiling, and most importantly I think, being loved. I hope they understand just how important their work is, however controversial it may be at times. I know we are forever grateful for the technology and expertise of our NICU, and feel so fortunate to have our miracle children. We never dismiss their challenges or issues, but we knew we would face them, and of course to us, their lives are so worth it!

So, I don't have any new pictures, because as I went to take some yesterday I realized my memory card is missing out of it. I was upset, and need to look harder for it, or buy one. But I have to get one soon because yesterday we bought a 4' deep by 20' pool and I can't wait to get pics of the kids in it!

Happy Summer!!!!

Thoughts...

I've been a mad woman lately. Although I was accepted and again awarded a partial academic scholarship to law school...I again bailed out. Class 3 nights a week about an hour and half drive (each way) away for 4 years was just too much. Not to mention the state of the economy and the prospect of working 40 plus hours a week to make ends meet and pay for my debt for the following 3 or 4 years...uugghhh!
But, I did not completely "give up." I am currently taking graduate classes and am pursuing a masters in school counseling. It's basically what I do now in the after-school setting, but I need my masters in order to secure a job in the school system. This will enable me to work on the kid's schedule and have summer's OFF!!! I am excited. I am taking a class called "Issues in Child and Adolescent Development" and our first assignment was to chose an "issue" and present it to the class. We were told to pick something that is meaningful to us, so I chose cerebral palsy. So of course I was interested, which made the assignment easy and enjoyable. My next topic is ROP.

Things have been going well lately with the kids. Edwin is improving with his walker, and has finally, after almost 3 years, figured out how to rotate his trunk and gets into "bum" sitting all by himself!!!! This is a miracle to us and we are so pleased. He still prefers to "w" sit, but he is rotating to sitting on his bottom numerous times a day without any request from us that he "fix his legs."
Serena is really amazing with her memory, language, and creativity. I guess I am hyper-alert to all the skills they are acquiring, and am in awe of all they can do given just how high the odds were stacked against them.
However, we still have a long way to go. We still have school to face, and Edwin is still basically non-verbal, although he does say some words, his articulation is quite poor and the number of words are around 8-10. Signing is working well, and pointing to objects that he wants or needs also works to help ease his frustration. And of course independent standing and walking are still goals that we continue to work toward and hope for.
We also haven't been able to take away their bottles, although a huge accomplishment this weekend has been Serena drinking from a sippy cup and an open cup many times throughout the day...normally she outright refuses and cries uncontrollably for her "baba." Edwin won't drink out of an open cup, but will gladly drink from a sippy cup. Serena is still choking/aspirating on the water, but I think this is something she can control once she learns to control the flow and properly drink while protecting her airway. It's tough though, because I'm worried about this in daycare and at school. People are going to worry and it is one more thing that makes her "different."
Although I am amazed by the kids and feel so grateful for everything they are doing, it's hard not to notice how different they are compared to their "typical" peers. It's something I accept, but acceptance doesn't always make it less painful. Even the "little" things are tough...like Serena's voice. She can't yell, not that I want her yelling, but even when she tries to call for the dog, you can hear her attempt to increase the volume of her voice, but it doesn't work. I know this is going to affect her socially, and it just sucks she has to deal with it. Edwin's "disabilities" are more obvious, and he won't be aware (as of now) that he is "different;" but there will come a time when he does realize it, and that's going to be hard. It's so easy for me to love and accept them, but I know it's not going to be so easy for everyone else. For example, they begin daycare July 1st. The daycare is located in the same building where I work, which is why they are going there. However, they have never had a child with a physical disability and they really aren't staffed to give him the individual attention he needs. I have negotiated having an 18 year old who has a summer job to be placed in the Pre-K daycare with him to give him that attention and support he needs. But come summer, she's off to college and there is no funding to hire more staff. I am worried about how much individual attention he will receive. In school, which is only 7:55-10:35, he will have the support of an aide, but the school system doesn't help kids in daycare (and I have to work), and the funding that was available for aides in daycares has been cut given our crappy economy right now. I know having Edwin in the program is going to make everyone's jobs much harder, and I just hope they can love and accept him enough to not "resent" that he is there.
I'm probably over-analyzing things and worrying, but this world is catered toward "able-bodied" and "able-minded" people, and it's hard to create a safe place for your child with special needs in this world. Good thing I'll be in the same building checking in on them multiple times a day!
But seriously, What's NOT to LOVE????!!!!!