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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.

11 comments:

  1. It's been a good year, hasn't it? She's such a sweetheart.

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  2. Wow, to me it seems like she has come a long way since last year. It seems like this year was better. It was really cool reading all three letters and comparing them all. Thank you for sharing Erika.

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  3. Caroline has been a little busy bee growing up so much and learning so much. We need to see her again soon--we missed 2008 altogether. Terrible. Love you guys. Good job!

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  4. Very glad you are documenting Caro's progress. It must be nice for you to look back upon and see how far she has come. Glad she can taste and enjoy some things that way even if in small amounts.

    We need to see her again soon. Love, G Carneal. Cute picture.

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  5. Thanks for sharing that letter! I always enjoy reading about Caro's progress. She is such a beautiful little girl.

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  6. Hi Erika!

    I recently found your blog from your FB page. You guys are amazing! Your little girl is adorable and that hair is to die for! I just read through all the letters you have written through the last few years and I'm so glad she is getting stronger. I wish you guys all the best!!

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  7. Erica! What a beautiful blog (I noticed the link on facebook)---thanks for sharing! You and your husband are incredible parents! Let me know if you ever go to UCLA to see the pulmonologist (are you seeing Dr. Ischander? she's a really nice lady). I'd love love to see you!

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  8. Tears. what a little trooper. when i read she was picking up her binkie and getting to taste yummy little fruit purees i was overcome with joy. Congratulations on all your hard work!!! Can't wait to here what this year holds for your dear little Caro.

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  9. Congratulations on Caroline. Sounds like she is doing so great. She can do so many things. And what wonerful parents she has. We miss you and Bryce so much.

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  10. Wow what a journey you are on!

    Praying for your family and that Caro's health continues to get better and better.

    Caro is looking beautifully radient and healthy in her most recent photos.

    You are doing such a good job Mum and Dad!
    (I accidently found your blog while googling Baby sign language, you have a chart on one of your pages last year or the year before, and i got interested in your incredible journey)

    Youre a beautiful family.

    Kellie from Austraila.

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  11. Erika-- I always love reading your updates! She is so beautiful and it amazes me all that you do for her in continuing to always help her make as much progress as possible-- And that cute picture with her smile! That was awesome! You are great parents! I miss you guys lots!!

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