Caroline's Year in Summary

Sunday, April 26, 2009

Below is a letter I wrote this month for the 9p- Support Group Yearbook (although Caroline's diagnosis isn't solely 9p- [it's 9p- + 1q duplication], it's close to what she has so we participate  in this group). It's a summary of what's been going on with Caroline since the letter we wrote in 2008 (and she has come a LONG way from the first letter we wrote in 2007).

Caroline has made a lot of progress since last writing – I’m happy to report that we have had quite an uneventful year (medically anyway)!                            

GROWTH: Caroline’s growth continues to move along well.  She was born at 5 pounds, 13 ounces/18inches long, measured at 20 pounds, 6 ounces/28inches last year, and is now a very healthy 29 pounds, 14 ounces/33.5 inches long.  Her current measurements place her in the 75th percentile for weight and the 50th percentile for height!

FOOD: Caroline still gets Resource (1 cal per ml) Medical Formula.  She has had several bouts of constipation, but we’ve finally found that adding 2.5mLs of Miralax to her Resource every 2-3 days keeps her regular.

Caroline is still not taking any food by mouth.  It is all given via g-tube.   In the last letter, I reported that her speech therapist had been working with her using thermal therapy, a Nuk brush, and Dum-Dum suckers.  We still do those things and can now feed her any food in pureed form!  She has tried bananas, applesauce, sweet potatoes (a favorite), and carrots.  She can only swallow about 15% of what we spoon-feed her because her brain and her low muscle tone make it very hard to coordinate her breathing and swallowing.  The good news is that she enjoys tasting the food – no oral aversion yet – she opens her mouth wide over the spoon! 

DEVELOPMENT:  She’s rolling!  She rolls over and over and explores whatever space she’s in.  She’s still not quite sitting up on her own (she needs support on her lower back usually), but her head is a lot less wobbly than it was last year.  Her Rifton Chair is helping her practice sitting up, and her PT has ordered a stander that should be here in a few weeks to help her bear weight through her legs.  We read with her, and she likes to try and turn the pages.  She can grasp small toys and even puts her binkie back in her mouth when it drops out.  She gets physical therapy 2 times a week and occupational therapy once every other week.  She smiles a lot each day!

TRACH/BREATHING: She still has a trach and still needs oxygen 24/7.  Her doctors here in NV keep telling us that she won’t need them eventually. Hopefully they’re right.  We’re currently seeking a second opinion from a pulmonologist at UCLA regarding her continued need for oxygen.

HEART:  Caroline’s cardiologist recently examined her heart and told us that the device that was put in place in Oct 07 is still functioning very well.  However, he did notice some elevated pressure in her heart, or mild pulmonary hypertension, due to her continued need for oxygen.  It’s a condition that, while not too serious (he doesn’t need to see her again for 1 year), needs to be monitored.

HOSPITALIZATIONS: 1 – For her craniosynostosis surgery (see below)

SIGHT: She still has optic nerve hypoplasia (ONH).  Her first ophthalmologist diagnosed her as legally blind last year, but a second opinion revealed that “legally blind” might be too harsh a term for Caroline’s sight – she’s more “visually impaired.”  Her range of sight seems to be about 3-4 feet.

HEARING: She recently had another sedated ABR/conductive hearing test done under sedation in the hospital, which determined that she has moderate hearing loss in her left ear and severe hearing loss in her right ear – a more serious diagnosis than we had at this time last year.  She has hearing aids to help her with this problem.

LAST YEAR’S BIG SURGERY: Caroline had her craniosynostosis surgery at the end of last April.  The surgery took a little longer than we thought, but she remained stable throughout and recovered well – just a little slower that the expected 4-5 days (she left the PICU around day 6) because she needed an unexpected blood transfusion.

Her head looks great now, and, while it’s hard to measure scientifically, Bryce and I strongly believe that this surgery helped her significantly with her development (her brain now has room to grow – before the fused plates were putting pressure on it).  And a bonus, her hair grew back very well!

Caroline just a few weeks after her surgery last year.

Happy Belated Easter Everyone!

Friday, April 17, 2009

Hi hi, everyone! We had a good, low-key Easter, and by low-key, I mean LOW-KEY! I'm talking no eggs, no ham, no baskets, etc. Buy, hey, I did get Little an Easter dress and shoes AND a cardigan, which is a first for me. I embarrassed to admit that I hadn't purchased a dress or shoes for her before : ). This sounds neglectful, but it's not - I'm telling you. With all of the clothes from family (especially Gmas!) and friends, I've never needed to get her a dress (I will say I have purchased a couple regular outfits for her...) nor shoes (she doesn't walk so I haven't been so motivated w/the shoe thing).

Anyway, I am now a good mom : )!

Enjoy the pics of the aforementioned dress/shoes (I also have to say the shoes pictured below weren't the cutest I'd picked out, but, because I'd never bought her shoes before, I didn't know her size. So, I picked out a couple pairs and the shoes below are what worked. She's a size 5 fyi.):

Caro and her first Peep

Tummy time in her Easter dress

Daddy and tired Little (these were taken AFTER church, so she had had it)

Our Happy Easter bunny

Grandma and Grandpa's visit

Tuesday, April 14, 2009

My parents were in town last week and were able to spend lots of time with little C. We asked them to make her Rifton Chair more fun to be in as she has difficulty keeping her balance and sitting up.  They collaborated with Erika to come up with the creative idea to velcro tupperware on the desk (to keep them in place) and fill them with items that are interesting in texture and fun to play with. These toys have kept her busy enough so that she doesn't have her mind on how hard it is to sit up on her own!

Gma L showing Caro how to play with her new toys:

Don't eat the toys!

Who me? Fine I won't eat them I'll just smoke them.

Whatever, these toys are delicious!

Thanks G&G L for visiting!  We miss you!

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