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????!!!!!

What are those twins up to now?

I feel like I've been so bad about blogging. It's tough...I'm so busy enjoying the house and our backyard...But I want to document and share S&E's progress, so I need to make time for blogging.
Serena and Edwin are maturing way too fast. They are growing up before our eyes, and making a lot of strides development wise.
Both are starting to eat with forks and spoons...and even EDwin who has more difficulty because of his CP, is doing fabulous! They LOVE eating with a spoon or fork.
They both love swinging on their swing set, playing outside with balls, the John Deer tracker and car Uncle Ethan passed down, shovels and buckets, and the climber/slide outdoor toy.



Serena is talking unbelievably. It is truly amazing. She doesn't just say phrases, she has full out conversations. An example from this morning. She follows me to the bathroom, "Wash hands now. Brush teeth. Hi Nala (the dog). Come here Nala. (Nala leaves) Oh, ok. Bye Nala. Where'd Nala go Mommy?" She knows pretty much everything we ask her. Although she is stuck on pink. Every time we ask her what color something is she says, "pink." Even Daddy is pink. Serena pretends to be a dog now which is really cute. She gives her animal toys drinks and says "ssssss...ahhhh." We ask her what her name is and she is now saying "Me!" But this morning she did say "Me, Ena." She is a tv freek and if you'd let her she will watch it all day, so we have to have certain times she is allowed...(in the morning so I can shower and Daddy cleans up from breakfast) sometimes after dinner while I eat or am cleaning up. But she knows every show on Noggin it seems and knows most of the characters names and sometimes the theme songs as well. She has a tremendous memory, as I did as a child, and has memorized parts of her favorite books. I am so excited for her to start daycare/Pre-K because I know she will pick up so much more...hopefully potty training which isn't happening now, partly because we aren't really trying.
Serena is learning how to share and be more gentle, but still dominates amongst all aged children. She is fiesty, cunning, and intelligent. She's adorable, and when she wants to, she will hug you oh so tight and tell you she loves you. That's the best feeling in the world! Even if she does it to the dog much more than us!




Edwin is making great progress as well. Oh, and if you didn't notice, Daddy cut off all of his hair. I was NOT happy, in fact told him specifically NOT to cut off his curls, but you know how that goes. I am getting used to it now, (after I cried about a half dozen times), and he does look older with his hair short. But anyway, Edwin is starting to pick up more signs and even combining signs..the other day he signed "more eat" unprompted which was great! He has just learned "sleep" and it is adorable to see him sign it. He is picking up verbal words as well, such as "ump" for jump, "ga" for Grandma, is saying "Mama" all the time now to call for me, "gooo," "go caaar," "whoooa," and "god" for dog. Verbal language is still a challenge for him, and he seems to do better with pointing and sign for now, so we really need to take pictures of things he may want in the house for his communication book.
Edwin is happy playing with toys, especially putting balls in his basketball hoop. He would be just as happy to watch boxing and basketball as he would to watch "Go Diego." He LOVES sports. Edwin also LOOVEs taking a tubby. He is able to rotate his trunk to sit on his bum FINALLY which is great and does this A LOT in the tub! Edwin also flips himself onto his back in the tub and lays his head in the water and starts smiling and laughing. It's a little scary and you have to watch him because he doesn't have the trunk strength to sit up, so he rolls over, which means his face goes in the water, but he LOOOVES this and does it on purpose. If you say "go swimming Edwin" this is what he does. Lays down and gets his hair wet, rolls over getting his face in the water, and then pooping up with a huge smile and laughter. I have to get it on video!
Edwin is a very happy, very lovable boy. He loves bedtime routine of tubby, jammies, and stories. He likes to turn the pages and point to his favorite pictures like we do to him get him to point. When he's done poiting to what we ask...he grabs the book and points and looks at us. I also love when you say "All done" how he puts his hands out, palms up, and rotates his wrists around...it's really cute. Sometimes when I ask him for a kiss, he will slowly lean forward and put his lips on mine. It's so adorable! He is so precious and so very loved.

Edwin's wheelchair trial and transition planning meeting

Hi all...
It feels like forever since I've written.
Edwin has had a wheelchair to trial since last week. He has improved dramatically in a week of practicing, and it is working so well this is the one we will purchase for him. As you can see he uses the rubber wheel part to push himself, but it's ok. He gets around well. However, we are looking into some protection over the wheels so that he doesn't get his fingers caught in the spokes. Any suggestions about this would be much appreciated!!!
He will need a wheelchair for distances as he is still not using his walker more than several steps. Having a wheelchair as opposed to a stroller will help him become more independent...especially as he begins school in the fall.

Speaking of which, we had our transition planning meeting with Jerry from Special Ed and our EI team. He was super nice and very informative. The kiddos will attend school down the street from our new home 5 days a week from 7:55-10:35. We are so blessed to live right by the school that has a full time nurse and medical suite in the school as well as 2 aides, a nurse, and a teacher in one of the inclusion Pre-K rooms (the room Edwin will be in.) Edwin will probably do a 12 month program based on his therapy needs. They will be in separate classrooms, which we think is best due to Serena's dominance. Serena will very likely qualify for an IEP based on her PT and OT needs, and her eventual need for voice therapy from vocal cord paralysis. If her academic needs are "normal" after kindergarten she will likely be on a 504 plan for ST. We have our assessment and IEP meeting the first weeks of Sept and they begin the 29th!
Things are so wonderful in our new home. It has made a dramatic difference in the twins lives and we are so grateful to have this beautiful home. Despite the challenges and having things be different than I would have expected before giving birth to preemies, I feel extremely blessed. I cling to every little thing they *can* do and look forward to all the things they will surprise us with as time goes on. They are truly miracles and continue to amaze us every day!

Picture Post...new house, new doggie