Monday, March 16, 2009

Does anyone else feel like parenthood is just a big 'eat your words' fest?  I can vividly remember rocking Lilah in the hospital back in September, after we were out of ICU and had the seizures under control, and thinking "I will hold this baby and never put her down", "I don't care if she never sleeps through the night", "I will treasure every moment".  Yeah....I didn't make it very far:). 

For the unaware, I am a very "unpracticing" speech-therapist.  I love, love, love communication....it's what allows us to know each other, learn about the world, get what we want, etc.  There is nothing better for me than hearing what a child has to say.  Anyway, when we sat in our pediatricians office and got the news of Lilah's chromosome abnormality, the first thing that came to my mind was "I want to hear her voice.  I might never hear her say 'mama'."  She has been an extremely quiet baby--didn't cry when she was born and hasn't cried (a newborn 'whaaaawhaaa', that is) since.  She makes all kinds of  quiet, grunting noises, but no cooing, no consonants, no vowels.  This is not a good predictor of speech:(!

That was a very long intro to say "be careful what you wish for"....WOW!  Miss Lilah has found her voice and she is not letting up.  The first time I heard 'it', I was upstairs in my bathroom and thought maybe Garrett had picked her up and dropped her right on the floor--it's that intense. 'It' was so sweet the first day....we were so proud of her for trying so hard:)  The second day, Paul and I started the 'it's a phase' and 'she's just trying it out' reassurances to each other.  Day three was more like "please God, make it stop!".:) 'It' sounds like a mixture between a wounded cat and a shrieking monkey and she loves it.  Formerly paci-loving, Lilah won't take her paci.... b/c then she can't make the noise:).   She loves to look in the mirror and watch herself make the noise.  When she wakes up, it takes her a few minutes, and then she remembers "oh yeah, I can make the noise."  It's great to hear her voice...but, boy is she loud!

It's business as usual around here....lots of medicines, creams, drops, treatments, and sprays--and fervent prayers to get off this oxygen and out of the house!  Unfortunately, that will be no time soon.  L is having some more pronounced "lung issues" and can't be weaned from the O2 soon.  This is the biggest thorn in my side (not to mention hers)--I cuss that huge machine.  It's heavy, loud, and totally ties her down.  Trying to be thankful that we live in a time of modern medicine, but not always so successful.  She is getting much stronger, and that has got to help her breathing!  She has started physical therapy and I notice improvements already...Lilah is not so sure:(.  It's very hard for her and she would much rather lay on her bean bag chair and chew on her paci!

we busted out the spring clothes yesterday...see the arm rolls??
knees pulled up and arms reaching....woohoo!
poor G is having trouble getting rid of his ear infections....this one pretty much sums up his mood:)

10 comments:

Cade and Cora said...

Yay Lilah! She's getting so big! I love the reaching! Cora loves the bow! Every night at bedtime Cora says, "Don't forget to pray for baby Lilah!" and we NEVER forget. Our recent prayers have been to get rid of the O2. That must be hard! We will keep praying!

daisyeyes said...

What a sweet sweet girl! And how funny about the eating your words, I think that is just life in general! I'm so happy to see her pretty smile and just playing around. Hope Garrett feels better soon and that the O2 is gone super quick.

Amy said...

I'm so glad you're actually getting to witness her improvement!! I know that has to bring you great joy, and is what helps you to put up with the shrieking!! Even be thankful for it!! I pray she continues to find her capabilities and eventually the full potential God created in her!

Maggie said...
This comment has been removed by the author.
Maggie said...

OK, lets try this again. It's so nice the hear that Lilah is finding her voice, remember, all that noise is also exercising her lungs(maybe it will help get off the O2). Tell Garrett to get better soon, cause I miss him and hope he will be at school on Tuesday. That picture if him is precious.
Maggie

Jessica said...

yeah for development! Thanks for the update and adorable photos!

notes of em said...

go lilah go! go lilah go! go lilah go!
smiles of happiness and glee over here for one active little girl. reaching and stretching, that is awesome!

The Leonards said...

i love your words:) can't wait to hear lilah's new noises. enjoy your pretty toes!!!

lukeandsarah said...

Oh my gosh Gina, Lilah is looking so much older!! She is turning into a little girl. :) She is absolutely adorable. My thoughts and prayers are still with you.

Rachel 'The housewife' said...

I have been searching for another blog in blog world for families with babies who have chromosome abnormalities. I'm excited to read more about your daughter. I have a son with a rare abnormality and I long to connect to other moms. Hope you don't mind me following you!