Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)


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Wednesday, February 29, 2012

19 months old

Whitney turned 19 months old in February!  So technically she is on her 20th month of life!  She is such a good little girl and absolutely melts my heart!  Every little thing she does or says is so adorable!  We love having her in our life! 

Whitney is about 19.5 lbs and 32 inches tall and in the 3% for her height to weight ratio.  She is so smart and learns pretty quickly I think!  She has lots of energy too.  Loves to play with the dog and her uncles.  Loves to play outside, in our backyard and at the park!  She still loves her baths and water.  She loves playing the piano.  She likes climbing on everything, even though she can't get down herself.  She's becoming more independent and likes to play on her own.  She really doesn't talk much at all but she can communicate to us really well through sign language.  Whitney knows about 30 words! Some of her new ones are Baby, Water, Music, Cracker, Home, Book, Ball, Swing, Slide, Car, and Cat. Her speech therapist is very good but Whitney still doesn't say much of anything on her own! 

 Whitney depends on a feeding tube (still) for all of her calories and nutrition.  Some things she gets through the tube are Goat's Milk, Quinoa, Rolled Oats, Banana, Apple, Crasins, Strawberries, Mixed Berries, Sesame Seeds, Avocado, Peas, Spinach, Sweet Potato, Walnuts, and a lot of Mixed Veggies, and Nutritional Yeast, Probiotic, and a multivitamin.  She is now on 4 different types of medications!  It actually makes me quite sad that my toddler depends on all of these! It makes me kinda emotional to go to the Pharmacy to get the drugs.  They always ask if I want to add flavoring and I say, "No it just goes through her feeding tube!  And can I have some extra 5ml and 1ml syringes because the measurements get wiped of easily when I use them 3 times a day." They are always so nice and understanding!  So some things that Whitney has tried recently are Gravy, Yogurt, and Applesauce.  She is really inconsistent but we try to make every encounter with food a positive one!  But now she won't eat those things anymore.  I always offer her something to eat during every tube feed so that she know she suppose to be eating it and so that she can smell it too. I took her out to eat the other day with a friend and her kid.  Whitney did pretty good sitting in the high chair.  I offered her a variety of foods I though she would taste but she just handed them to Carsten who happily ate all of it! It's a good experience for her and me too.  I did tube feed her while we were there but no one really noticed!    Usually though Whitney becomes very anxious around food and gets very upset.  Some of our goals for her are to eat an entire veggie stix or teddy gram or whatever else little food instead of just a couple of bites. Be able to touch food and not "freak out" about it being gooey or messy!  Also to accept a spoon of food without putting up a fight or fussing about it.  It takes a lot from her to take a bite of something... I have to say "Ready!?   Ok.  One,   Two,   Three,   Ahhhhhh!"   and I have to hold her hands down or put my hand gently under her chin.  I only give her a bit if she moves forward and accepts it, NO force feeding!  Anyway, as you know, feeding is a huge hurdle and we are no where near becoming tube free. I heard of a CDH survior having a feeding tube at age 5 and I thought that was crazy!  But back then, I had no idea how difficult it is for them to learn how to eat and gain the skills and confidence.  It's so hard when they miss that opportunity to learn to eat and have so much pain with food. I know I will never judge anyone's situation again!  Whitney's feeding therapist is very good too but once a week for an hour only makes a tiny impact!

It's been a pretty laid back week for us except all the usual therapy appointments and other visitors!  Whitney is finally doing well in Occupational Therapy!  This past appointment was the first time that Whit didn't cry the whole time.  But of course her therapist just went on maternity leave!  So we'll see how Whitney does with a new one!  Cross you fingers! 


Anyways! Life is great here!  We're excited for the flu season to be over with so that we can take Whitney out and have some fun!  I'm thinking the Children's Museum, the Zoo and Aquairum, Story time, Church, and more! 




Whitney loves singing "if your happy and you know it" and stomping her feet on the wooden thing.



Love getting into her Jeep and being pushed around




But hates it when a fly or bee fly in her face!




Stacking cups during her meal time




Getting very tired of meal time! haha! 30mins is a long time to sit there!




We walked to the park with Aunt Brianna and Gramma P.




So peaceful on the swing




Walking on the balance beam with Gramma




So cute and rare!  Whitney snuggling with her Soon to be Uncle Rhett! She was so comfy!



Just too cute!  They will be great (far-future) parents! We are so excited for them to wed!

2 comments:

  1. I've been wanting to take my boys back to the children's museum! That would be so fun! They can't wait to come play Saturday, your house is known as the house with the tortoise's, awesome pool with a waterfall and playground :)

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