Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Lilypie Second Birthday tickers

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Lilypie Pregnancy tickers

Lilypie Pregnancy tickers

Monday, January 30, 2012

What happens when the toddler starts to climb



They all fall down!


Whitney K. is 18 months old and weighs 19 lbs 5 oz. She is 100% G-tube depentant but!  She is definitely improving with food because she is actually putting it to her mouth and licking it!  She won't eat it but at least she is getting brave enough to taste it! That's awesome that she is becoming interested in food and we are on our way! (FYI it took a year to achive this step...) 

Whitney is also learning a lot of new words/signs!  She can sign about 20 words which include: More, All Done, Up, Down, Please, Help, Sleep, Eat, Dog, Cat, Duck, Butterfly, Hat, Phone, Shoes, Bye Bye, Hi, Bubbles, Bath, Ball, Book, and Car.  Plus she knows her body parts and signs to many different songs like Popcorn Popping, My hands Upon my Head, Head Shoulders Knees and Toes, The Itsy Bitsy Spider, Pat a Cake, and much more!  I'm going to start working on "food" signs like milk, water, cheese, cracker, apple, banana, drink, and cup. 

Getting ready for a bath!









And back to title... They all fall down and get hurt!  Poor girl, no one was watching her while she was in her Great Grandma's room watching tv.  Whitney has started climbing up her G.G.'s chair to sit with her and apparently this time she slipped off.  Happened on Sunday and I ran in there from the kitchen to see her sitting on the floor screaming.  I gently picked her up, making sure she wasn't gushing blood :) or broken :) She wasn't so I carried her to the sink where she threw up and I rinsed her off.  She didn't complain about it much that night so I think she's okay! But it does look so sad!  






But she is still into climbing! 





 Eventually she did get up by herself! She can get down by her self too but not very gracefully!!






 All done and clean from her bubble bath!



In her bath today though, was the first time she's ever thrown up in it! Whitney loves her baths! She hates drying off (ears, nose, eyes, and gtube) and hates lotion!  But loves taking long, warm, bubble baths.  She has though, several times, thrown up right after a bath on her changing pad, but this was the first time in the bath tub. 
So I was putting conditioner in her hair while the tub was filling up with bubbles.  I told her to wash her feet. Then to wash her face.  Whitney had a ton of bubbles in her hands and put it all on her face! I started to laugh then she was crying and choking.  She put bubbles in her mouth!  I washed them out but she was trying to too, with a hand full of bubbles!, so I grabbed her hands and rinsed them off and then I continued to get the bubbles off of her face. She was fine but she spit up a little bit, then spit up a lot!  So I drained the tub, and refilled with clean water and put in only a tiny bit of bubbles!  She had fun playing the rest of the time thank goodness!  














Sometimes I like to do her hair in a pony tail or pig tails, instead of just plain down.  Whitney's hair gets in her face and mouth a lot so then I just put it in a simple messy pony tail. Pig tails are hard for me and get messy fast! and the only way to get rid of them to cut the hair tie out and bathe. Plus Whitney complains when I do her hair, even just nice brushing.  But, with her sitting on the piano bench playing the piano is the only way I can do her hair!   And it still has to be quick!  (BTW she can climb on the bench herself too).  








She can also climb on the couches!  I guess we're at the stage where I can never turn my back!  Next thing I know she'll be climbing on top of the table!! 












I don't really like the pig tails on her so I found matching hair clips and made them into a bun! 

















Whitney lost the Ipod touch yesterday and she found it today! Thanks hun but I'm going to hide it now! 





The last few days have been really full! We have the usual OT and FT this week but she also has an eye doctor appointment to just follow up/ check up from the one a year and a half ago!  Make the most of your last day in January this year!!

Monday, January 23, 2012

Cardiologist and more

"The course of our lives is seldom determined by great, life altering decisions, our direction is often set by the small, day-to-day choices that chart the track on which we run." ~ Gordon B. Hinckley

My husband, Thomas, had his 27th Birthday last week!  I made his favorite Strawberry cake, but I burnt the cake, heated up the frozen strawberries way to much and same with the whipped cream topping!  Some how it still tasted good! His parents made lasagna for his party and so did mine! haha, that's not his fave but it's still good!  I also got ice cream and root beer for floats.  For his present this year, I got Thomas a nice lunch box that was on clearance and promised to make him lunches for work!  Who knows how long this will last but I'm hoping a while, even though I forgot to do it last night! I love my husband very much!



This past weekend was also Lily's 1st birthday! I took Whitney because my parents had to go outa town last minute to help my sister move back home (whom by the way is engaged to be married!).  There were a few people coughing so we didn't stay as long as I wanted too. Whitney cried when we got there because she was so overwhelmed and scared but after a while and being distracted by a balloon she settled down and decided she was in a safe place.  Lily looked so so adorable in her birthday outfit!  Lily is also a tubie like Whitney! If you remember their tubie photo shoot! from my other blog.  Recently, Lily was diagnosed with Mitochondrial Disease.  She is a very strong little girl with amazing parents and I pray for them daily. 



On Saturday we went to a friend's bridal shower.  It was simple and pretty fun!  It also helped us get some ideas for my sisters bridal shower!  I'm so excited she getting married! 
On Sunday, Thomas' parents were able to stay home from church with Whitney for us! 

Today, we just got back from Phx Children's Hospital for Whitney cardiology appointment.  Same thing of with her crying at the nurse for taking her blood pressure and oxygen saturation levels and her temperature. Her BP was high but that's because she was kicking and screaming.  Oxygen was at 96 which is perfect.  Then they took us back to do the echocardiogram (ultrasound of Whitney's heart).  My mom held her on the bed while I played the her music and danced and sang.  After a while she settled down and the tech got some good pictures.  Everytime the tech would change postition though Whitney would start crying again.  But she did a good job and it didn't take too long.  We waited again in a room for Dr. Puntel.  Now he is the only Dr. likes!  He is able to listen to her heart without making her cry! It was amazing!  (she does also like her surgeon mostly too though).  Anyway he said a bunch of technical stuff that I wrote down but basically, the pressures are looking stable and the numbers are good.  The left pulmonary artery is still small and he wants to balloon it open again in May with another Cardiac Cath.  At that time they may also want to close the PDA and also the ASD maybe.  He said that she did have a PFO but he thinks that closed on it's own.  He wants to do another echo in April too.  He doesn't want to increase the dosage on her Sildenfil, even though she's gained weight, to see if that will very slowly wean her off of it. 










I'm really glad that this will be a much easier week in terms of appointments! Just got feeding therapy and speech therapy!








Shots, Upper GI and more

Last week Whitney and I and my mom kept super busy with appointments including Occupational Therapy, Feeding Therapy, Synagis Shot, and an Upper GI and small bowel follow through. 

Being her silly self


Watching Elmo's World on Sesame Street




The OT, FT, and ST are going pretty well. I can defintely see some improvement in Whitneys skills.  It's just a long drive out there but Whitney needs them and I really like this place. 



The synagis shot went horribly. Now normally Whitney does pretty good going to any and every Dr. office, but today, this was different. So my mom came and was carrying Whitney and as soon as they stepped into the building/waiting area, Whitney started crying. A really sad, scared, pitiful cry. Made me want to leave right then. But I know she needs this shot so we continued on. The crying got way worse when we walked in to the room. The nurse was talking so softly that I couldn't even hear her. Whitney then threw up. Yeah she was so scared and screaming so much that she threw up. The nurse asked if she was sick and I just said no she just really scared and anxious. Then she wondered if she'd be okay with getting a blood pressure, that if she just cries it wouldn't work. I said that well she going to cry, but she wanted to try anyway. Whitney freaked out more when the nurse came towards her with the blood pressure cuff. Yeah. Then I held Whitney and she was just shaking so much and only calmed for a minute when I sang a little. Again, second guessing if this was worth it. Finally I brought her over to the bed and she held on to my fingers so I couldn't just leave her. My mom stood there as well to help hold her legs and bam...shot. While looking at Whitney and holding her hands, I finally broke down. My tears gushed no matter how hard I tried to hold them back. Afterwards I immediately picked her up and quickly walked out the door and down the hallway. I think at one point Whitney wondered why I was crying. Then we went back in and the nurse said she could go out in the waiting room and watch the TV. Of course Whitney is still crying and shaking. We finally got outside and let Whitney walk around. My mom said that next time I can leave the room, normally I'm not standing right by Whitney, just this time I felt so so bad and she wouldn't let my fingers go. We drove home and Whitney was pretty fussy the whole time. But my mom feed her and she kept it down! Went right to sleep in her crib when we got home. And me straight to the blog to share my traumatic experience with everyone.

The Upper GI and small bowel follow through was done at Phx Children's Hospital.  After I registered, a nurse came over to put the ID band on Whitney's leg and thats when she started screaming.  I feel kinda bad for all these nice nurses who get cried at, but of course I feel more bad for my baby.  Then they took us back to the X-ray room to get started.  With Whitney crying the whole time, they explained to me the procedure.  We took her clothes off and laid her on the table.  The Dr. first used a water-soluable mixture in her g-tube but it was kinda hard to see.  The took a bunch of x-rays. It doesn't hurt Whit, she just really scared of the big machine and being held down.  She acutally vomited so they gave Whitney a break and after a while she fell asleep. Wimpering and crying the whole time.  When we put back on the table to use the barium in her tube and she woke up and cried some more.  Then we waited out in the hallway for about an hour.  We went back in for one more x-ray of her small intestines and were finished after that.
I don't have the written results but from what the Dr. saw he said that there were no obstructions.  They observed mild delayed gastric emptying.  Her intestines are not malrotated.  Her liver is up a little higher than her previous x-ray but it still looks good and the patch (replacing her right diaphragm) is holding it down pretty well.

 Waiting at PCH for the last x-ray



Gramma with Whitney wanting to leave!


18 months old! and weighs 19lbs 5oz






Being silly! Good view of her top molars coming in!








Good view of her bottome molars coming in



Which one to play with? They usually aren't all nicely put away!



Going down the stairs while holding her shirt up!?

Monday, January 16, 2012

SUPERCROSS!!

Not much to say bout Supercross cept it was AWWWWWESOMMME!!



Alicia & Thomas at Supercross in PHX Jan 2012





Lots of fireworks when announcing all the racers




Lots of green lasers and lights (promoting Monster energy drink) one of the racers in the crowd





Lots of fire too!













The race was live on SPEED




I love the take off!




And watching all of them squeeze through the first turn.




Happy Birthday Clayton!!




This was Thomas' first time ever to supercross and he loved it!





 My dad also loves supercross and has taken me every year since I was in high school!




It was a pretty intense race this year!




I liked this view from the balcony but sitting down closer is way cooler!




This is the mound of dirt that James Stewart crashed on!  He was doing so so well passing every one up on the final race only to biff at the end! I was so mad/sad! 




There were a lot of crashes this year but everyone was okay!




The whole track!  The stadium was full! 


Welp, hopefully I'll be able to go again next year!