Charlotte Update

Over the past few months Charlotte has been making amazing progress. She has also seen her first (and hopefully last) neurologist and had her second and third visits to pediatric opthamologists-one doctor checked to make sure all of the eye muscles were normal, the second checked her retinas to make sure there was no damage left from her being premature.

So her progress report:

1) In November when Charlotte had her evaluation at C-A-R, she still rated pretty young in gross and fine motor skills. Her gross motor skills were solid to about 9-15 months, mostly because she didn't walk and wasn't able to maintain her balance. As of today, she can walk and run--still with a stiff gait but it's getting better every day. We're still working with the PT to get her left side stronger; Hannah likes to help with the "super girl" and the wheel barrow exercises, which is great, because Charlotte wants to do whatever Hannah does.

Her fine motor skills have improved enough for her to hold a crayon/pen/pencil with a mature grasp (4-5 year old rather than that of a 2 year old) and she can even draw small circles, which her OT tells me is very impressive for her age. She can stack 7 blocks, put tiny objects into a container held out in front of her and then dump them out (instead of trying to reach in), as well as many other things that I never thought about a little kid needing to learn how to do.

2) The November evaluation also showed below-average cognition as well as below-average receptive and expressive language skills, meaning that she didn't understand everything we were saying--in fact at times it seemed as though she wasn't aware that the noises we were making constituted communication (Hannah doesn't get this either, but I think that's normal for a four-year old) and she wasn't able to communicate with us much, either. At that time, her total vocabulary--signed and verbal--was about 15 words.

The receptive language delay seems to have been most of the problem with her cognition because today, just over three months later, Charlotte has a signed and verbal vocabulary of 60+ words, and trust me when I say that she understands everything that we say. It only takes a couple of times showing her a new sign before she gets--and uses--it. (The one she learned on the first try was "MM" for "M&Ms." She knows where they are and won't take "no" for an answer--which is why we have to go to Target again tomorrow.)

She is also signing phrases, including "more bear please," unprompted, and creating her own compound signs--combining "more" and "cookie," for example. The first time she did it, I tried to show her the two signs separately since I didn't understand her. She corrected me, signing it a little more emphatically the second time then clapping her hands at me as if to say "good job!" when I asked if that meant "more cookie." Ok, ok, I get it! I was so proud of her that I didn't even make her say please!

For basic cognition, she matches shape to shape, picture to picture and object to picture. She is also pretty good at the basic shape puzzles. (Tip from her teachers: when teaching kids to use shape puzzles, you should put in any shape other than a square, circle, triangle or rectangle--these are the shapes they see every day and are most familiar with.) She is also good at recognizing people and things and no longer signs "dog" at any animal she hasn't seen before.

She's also good at problem solving, for example: we put cheerios into ice cube trays so that she would have to use a pincer grasp to get them out. She did this twice, looked at the tray, picked it up, dumped all of the Cheerios on to the table and tossed the ice cube tray aside. So basically, she's pretty much at (or above) age-level. We just have to figure out how to help her get the words out.

3) The neurologist thinks that Charlotte will have caught up in gross and fine motor skills as well as expressive language by her third birthday. Yay! We follow up in six months just to make sure that she is still on track.

4) The opthamologist reports no damage to the retinas (as expected) but that she does have a slight astigmatism in her left eye and is a bit near-sighted in her right. The doctor offered to write a weak prescription for glasses, but changed his mind after I told him that little miss destruct-o would snap them in 20 minutes, tops. Another 6-month follow-up.

Next Steps:
I'm trying to get Charlotte into a hippo-therapy program (you're forgiven for not knowing what that is. It's horses, not hippos.:). Both the PT and the OT recommended it to help relax her trunk and open up her shoulder girdle. This will help alleviate the stiffness in her midsection, get a full range of motion in her arms and shoulders, improve her balance, etc. Fortunately, insurance should cover the sessions--the upkeep on horses isn't cheap, I think. That and the fee for the OT and/or the PT who run the session--most of whom are worth their weight in gold.

We're still doing 1 hour a week each of PT, OT and speech therapies, as well as a 2.5 hour class once a week with other developmentally delayed kids. At home, we do at least 20 minutes a day each of the PT, OT and speech--but usually it ends up being much more. A lot of the PT work Charlotte doesn't like because she figures out pretty quickly that it's actually work. Believe it or not, the speech is the most difficult--Hannah won't let either of us get a word in edgewise!

I am so incredibly proud of Charlotte and would like to say that I'm handling all of this gracefully, but there are days when I just want to go and hide in corner while I cry. When I look at her goal sheet and the gap between how far she's come and how far she still has to go, I can't help but feel unequal to the task.

Because Hannah hit all of her marks early, my biggest concerns with her were teaching her right from wrong, to clean up after herself and not to sass mommy. But with Charlotte, I have to make sure she watches me say every word, emphasizing the first letter sound. I have to look up new signs every day so that she can tell me what she wants. I have to remember that the calf muscles need to shorten and lengthen and that there are two different types of exercises for each. We have to take walks, making sure to go uphill and down. I have to remember to hold her shoulder back and down while she works; to make sure she turns and stretches from the hips while sticking color forms on the mirror; to get her to spend time stacking things up--preferably above her head--before she knocks them over; to stand on her left leg; to walk on her toes; to ask her to fix her legs when she sits in a "w" and to adjust her pelvis when she sits with her legs stretched out in front. I also have to remember that, when she's tired, Charlotte will quite often just fall over. If she lands on her left side, she will sort of get stuck for a minute or two, shaking, while her muscles work to pull her up again.

There's more, of course, but I feel like an ass for crying about it when I am able to stay home and take her to her appointments and do her homework. There are parents in our class who work full-time and deal with all of the same issues and more.

One other mom from the class and I agreed that one of the hardest aspects of all of this is that, as the primary caregiver, it feels as though it's all on us. If our daughters don't progress, we didn't work hard enough. When they succeed, we just cross off those goals, write in new ones and start all over again. And of course, the older and smarter the girls get, the more stubborn they get. But . . .

We were playing in the garden today and Charlotte came up behind me and kissed me on the head. It seems like such a little thing, but I didn't ask her for a kiss. She walked up to me and did it on her own. I was stunned, amazed and delighted. I can't wait until the day when she kisses me and whispers "I love you mommy." You always know that it's worth it, but moments like that really let you see what a great job you're BOTH doing.

When she was a baby people would always remark on what a good baby she was and how sweet she was. Thomas and I would alway assure them that yes, she was and that we thought that we'd keep her. If I were younger, I'd take 10 more just like her.