Thursday, November 06, 2008

Current Events

Gosh, it feels like it's been a really long time since I sat down and wrote a proper post. It's kind of like when you haven't cleaned your house in so long, that when you finally have time to do it there is so much to do that you don't know where to start. So then you get discouraged and just give up all together, which just makes it that much harder next time! You know?

We've finally gotten into a (sort of) comfortable routine with me back to work and the girls in preschool. The last couple of weeks in particular have been busy, with preparations for Halloween, the upcoming NICU fashion show, and me obsessing over election coverage and political issues. I am obviously happy with the outcome of Election 08 for a multitude of reasons, not the least of which is that it gives me hope for a brighter future for my kids. So, I guess we'll be sticking around for now;)

Preschool is going swimmingly well for both girls. I am really happy with the girls' teachers and Eden's one-on-one aide. They all have really positive attitudes and are very open in listening to my concerns and being generally helpful. It really is so much better than it could be, and I am oh so grateful for that. I volunteer in the classroom once a month, and either John or my mom will volunteer once a month as well. Today was my second time and I helped at the pet rock table where we actually made pet rocks and wrote little stories about them. It was quite fun. The girls get a kick out of calling me "Ms. Billie" when I am at school and it is so funny.

Both girls know all of their colors, shapes, numbers up to 10, can spell their names, and can recognize most letters of the alphabet. They are learning the letter sounds, and seem to be pretty on track with verbal learning for their age. I'd say they are near the middle of the class in terms of what they know, which is great considering that if they'd been born on time they wouldn't even be four yet, and there are some 5-year-olds in their class. They are definitely behind in terms of fine and gross motor, so their writing/drawing skills are probably the lowest. Holland can write the first four letters of her name (very large), and Eden can write the letters E, M (for Mom), O, and T. Writing is going to be hard for both of them, but hopefully with practice we'll continue to make progress.

The biggest issues we have had at school are with getting a proper car seat on the bus, and getting a swing on the playground that Eden can use. You'd think these are pretty simple things to do, but seeing as how they STILL have not happened, I guess not. We are making due for now with a STAR Seat (which I actually think she sits pretty good in), but we've been told that the district is going to get her a more supportive seat for the long term. We'll see. As far as the swing goes... I ended up taking a Little Tikes swing that she uses at my parent's house two weeks ago. They didn't try it until today when I was there, and it worked out great. So hopefully they'll use that in the meantime (and not just when I am there!).

I bought Eden a new chair, called the Child-Rite, that is like a Bumbo but bigger. It's a little big for her, but she is going to get a lot of use out of it. The best part, and what makes it totally worth the money, is that she is able to get into and out of it by herself! We could use two more of them (one for school and one for upstairs) if they weren't so darn expensive.

Eden also got a new potty recently (this one was covered by insurance), and it is working out pretty well. We're still hit or miss with the potty training, but it's going...

We celebrated THREE! years of hearing for Eden on Halloween. She is doing so awesome that it's really unbelievable. Over the past 6 months we have seen her language skills grow in leaps and bounds. She asks and answers questions, tells us what she wants and needs, sings songs, tells stories, and remembers details from conversations that we had weeks ago. People still can't understand everything she says all the time, but it is definitely coming and the gap between her actual age and her hearing age is steadily closing. It is truly a beautiful thing and makes my heart burst with pride. The cochlear implant is amazing, and certainly one of the best things we have ever done for Eden. I cannot say enough positive things about it.

Holland had an appointment with the ophthalmologist a couple of weeks ago. The good news is that with her glasses on she is seeing equally out of both eyes. The bad news is that her prescription has gotten stronger again and we had to get new lenses. She is now at -3.5, +1.50, 100 in her right eye, and -8.75, +1.00, 055 in her left eye. That's pretty heavy duty. But, on the bright side, it can be corrected with glasses, she can see great up close, and we're back to patching just 2 hours a day (as opposed to SIX). Plus she's just so darn cute with her glasses on.

Both girls are doing great eating. They are telling us when they are hungry, eating a great variety of foods, and seem to actually like it. Our biggest problem with eating right now is that neither of them will really feed themselves, and we frequently end up hand feeding them like babies to get them to eat enough. Both are growing in length, but their weights have been at a stand-still since July when we dropped the bottles. Honestly, there is nothing more I can do than what I am doing now because I refuse to go backwards to consider bottles or feeding tubes at this point, so I just have to focus on the positive. They have recently been pretty healthy, have a ton of energy, bright eyes and happy smiles, and are developing a positive attitude toward food. We have made so much progress. What more can I ask for? They're just going to be small. Period. I have to preach it to myself all the time!


edbteach said...

Thanks for the update. I am so glad to hear that the girls are doing well and that preschool is working out for them. (I am a teacher and I read all of your posts about school with great interests. I think about what I would do if I had a kiddo with special needs in my class. I've never had the opportunity to work with a child with CP.)

The pictures are cute too!

Anonymous said...

Could you please explain a little more on what it means when you say " She is now at -3.5, +1.50, 100 in her right eye, and -8.75, +1.00, 055 in her left eye" I mean expand on the three measurements also + - in the same eye, I am a mom to a micro preemie who has a eye appt coming up in two weeks, Thanks in advance.


Billie said...

The first number shows how nearsighted she is, the second show the degree of astigmatism, and the last is the "axis" (not sure exactly what that is except that I think it has something to do with where the astigmatism occurs in the eye).

When she first got her glasses (Dec 2006, she was -3 in her R, and -7 in her L with no astigmatism, so you can see how it's gotten worse over time:(

With her glasses on I think the doc said she can "read" pictures at 20/40 with each eye. This is good news because at the last appt she was at 20/40 with her good eye, and something like 20/70 with her left.

I am not so good with the 20/20 numbers. John and I both wear glasses so I am more used to the + and - numbers that we have always seen. It helps give me a better frame of reference. John's eyes are worse in terms of nearsightedness (I think he's about a -4 or -4.5 in both eyes), but I also have astigmatism in both eyes in addition to being nearsighted (-2.5, +1.00 or around there).
HTH! Good luck with your appointment.

Melissa said...

Thanks for the update, Billie! I always love to hear how the girls are doing. I am especially excited to hear about how well preschool is going. It sounds like it has been a very positive experience, which is so refreshing to hear.

The pictures are incredible, too. Sometimes, I just take a look back through your site and I am amazed at how far your girls have come. You and John have so much to be proud of and thankful for!

Jen said...

I cannot even express the gratitude I fell that you have openly allowed the world to watch your family go through, what must have the hardest few months/years of your life.
I am a micro-preemie mom of twin girls. Born August 2007, two days apart at 23 5/7 & 24 weeks even. We spent 5 months in the NICU @ Childrens Hospital.
I found your site a few weeks after I had the girls and have follow ever since.
My daughter Grace is also very nearsided (20/600) and her twin sister Faith has bilateral hearing loss. Profound in both ears.
We too are going through the cochlear process.
After grieving the loss of my child having the ability to hear I realized you must have some answers on your site about Eden.
I have read every single blog you have ever posted here. And the way to have updated your progess with Eden's hearing loss/cochlear has helped us in a way I think no other person could fully understand except that of a preemie mom.
My girls are now 15 months old. (corrected they are almost 11 months) They are off oxygen during the day but still need 1/4 liter at night.
I want to thank you. So much. For your ability to keep this blog going and for having the strength to open it up for everyone to see. I truely LOVE that I can keep coming back; to maybe get some sort of perspective on what is ahead for our family.

Kellars Mommy said...

Glad that school is going well, I get this huge lump in my throat just thinking about sending Kellar when he turns 3. H & E seem to be doing well w/what all they know, I was actually going to go on pbm and ask what all they *should* know at 2 1/2. Kellar sounds a lot like the girls, I think he's going to have a hard time w/things like writing and having to really use his hands, I'm not sure if it's so much his hands as it is throughout his arms, they are just so uncoordinated at times. Is worsening eyesight something that's fairly common, Kellar is -3.5 in his rt eye as well. Glad all is well and love all the pics of the girls, they are growing up so quick!

Stacy said...

Billie -

What a great update! The girls look awesome.

Just an FYI - Tanner & Morgan have done the same thing with their weight. They go 5 - 6 months with no weight gain at all - and then they'll slowly add a pound over a month or so. I know the girls are smaller & they obviously want them to gain weight, but I think it's normal for this age to go through a period where they don't "put on the pounds" (boy, do I wish I had that problem!)

Anonymous said...

Hi Billie,

I started reading your blog last week, and have read all your posts (yes all of them!). I'm so glad to hear that your girls are doing great.

I stumbled onto your blog from a link someone left on the preeclampsia foundation site and have thoroughly enjoyed it. My own daughter was stillborn at 25 weeks, 4 days due to early onset preeclampsia in January 2007. She weighed 420 grams(14 oz), and I often wonder what life would have been like for her had she lived.

- Rosalinda Salazar
San Jose, California

Katy said...

I've probably already said this, but I'm not sure so. . .

They were SO worried about Charlie's weight that we HAD to have a feeding tube. Used the stupid thing for three months and I kick myself about the un-needed surgery. Then, they were worried that he was gaining too fast. Now, we're back to worrying that he's too thin, but he eats and that's all that matters to me. Our kids burn a lot more calories than other kids just doing everyday stuff.

Sometimes I feel like they're just looking for stuff to worry about.

Jane said...

Great update on the girls.

I have to agree with you on the Child Rite seat. I bought one for Elvis and, while I LOVE it, I spend a lot of time carrying it between home/school. And it's not really easy to carry. It is, however, easier to carry than to fork over the money for a second one.

RGZ said...

can you open up a way for people to leave donations for another bumbo-esque seat for eden to use upstairs? you can say it was my idea -- since it is. i'd love to chip in a $20 for a seat. she looks so happy in it!
i'm really happy to read all the great things about school. as a former public school teacher, i am relieved to hear your system is, for the most part, rallying for your girls.

Anonymous said...

I love watching your girls grow up. When I first started reading your blog they were a litle over a year old, now they are four.

Ellen Seidman said...

Billie, I am so inspired by this blog and by the girls' progress. And, thanks so much for mentioning the Child-Rite chair, I hadn't known about it. Once good chair deserves another: Do you know about the Kekaroo chair? (sorry, I can't figure out how to link blog comments yet). It provides excellent support, I will post a blog on it at some point, I'm sure, because it's been so helpful with feeding!

Mountainmom said...

I am NOT an Obama fan, but I AM an Eden (and family) fan, and would also donate a little toward another seat for her. Please post if you can set something up, maybe like what you had for MOD?

Lori in VA, long-time reader

Shannon said...

That last picture is the best! Love how both girl's are watching Daddy : )

katie said...

I'm glad everything's going well for you guys.
I love the last picture- John looks like he's having loads of fun! =]

Faith said...

Your girls just shine.

Rachel Dominguez said...

I am so glad to hear all of the good news. The girls always look so happy in every photo. They are a constant ball of smiles. I am so glad that school is going so well for them, they will be great!

Thanks you so much for a detailed post. I was wondering how well they were doing!


Shannon said...

After seeing Eden in her Childrite seat I ordered one for my kiddo for Christmas. I can't wait to get it.

And I also nominated you for a blog award.

Anonymous said...

I'm so glad that the one on one aide is is full of good people who truly care :)
Smooches all around to everyone.


Lissa said...

You have two beautiful miracle children!

I admire you for being a really good mother and being really strong and brave for your little girls

I was left deaf after my early birth. It was not as early as Holland and Eden's. I also have a cochlear implant.

Bird's Eye View Photography said...

Yeah! What an amazing positive and wonderful news filled post!

So glad to hear all of it!

The Hull Munchkins said...

Your girls are just darling! I love seeing pics of Eden in her cool chair and the adorable head bands you use to keep the CI on! Smart!

I really appreciated that you posted about the child rite chair you bought for Eden! We have been using the Bumbo for 5 years now and our daughter is getting too big for it. What a perfect step up and I think this will work even better b/c of the higher back.

Thank you! Now we know what to get her for Christmas!

I enjoy following your girls' progress.. they are amazing!