I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Monday, June 29, 2009

Sick and Tired

...of being sick and tired! Ughh, we have ALL been sick with the same lovely virus Alex apparently had - even her nurse showed up today sick. Zach's been spiking 103 - 104, yes I said 104 temps since Friday. He woke me up at 2:30AM this morning crying for water and I swear you could have fried an egg on the kid. Aaron's coughing and miserable, I'm all congested and miserable...it's been great - definitely was not on my 10 ten list of ways to spend the weekend. Alex on the other hand, has turned the corner. HOPEFULLY, the rest of us will not take a week to recover.

Monday, June 22, 2009

Holy Moses!!

So I don't think I typically over react anymore when it comes to Alex and her needs. It's been seven years, and we've pretty much run the gamut with her and illnesses. But let me just tell you, she scared the beejesus out of me today!!

I got home from work and talked to her nurse for a while. Alex was in a great mood, and she had a great day. Her chest PT and treatments have been working well and all seemed good. Until....

I had been sitting up with her on the floor doing some sitting exercises and it was time for her feeding. She hadn't napped but 15 minutes and seemed kind of tired, so I laid her in her bed and went to go prepare her pump. Came back upstairs and said...Alex, what is on your face?? She had a few bumps and I chalked it up to the excessive drool and runny nose. Started her feeding, and went back in to check on her about 15 minutes later and the entire right side of her face was covered in welts. Aaron came home from work right about that time and I called him up to come look at her - I met him at the top of the stairs, told him what was going on with her face and by the time we both walked over to her bed the welts had tripled! They were on her legs and her stomach. So now I start freaking out. She's been sick thousands of times and never had any remote kind of reaction. My pediatrician is on vacation but he told me after I called him on Friday concerned about her fever and possible aspiration that he would brief one of the doctors at the practice. So I call him and he tells me that he needs to see her "immediately". The practice is 40 minutes away, they lock their doors at 5:30 and it's already 10 minutes to 5. I put her in the car and drive like a mad woman. Half way there I turn around to look at her and literally, her whole body is covered in these red welts. I make it to the pediatrician's office with literally one minute to spare and as soon as I walk in the door they take one look at her, take her from me and race her back to one of the rooms. Ok, my pulse is now pulsating out of the side of my neck! They ran blood work, swabbed her for strep and gave her a full examination. Thankfully, everything checked out ok, her blood work is within normal range, and her lungs sounded clear. So at this moment, they're surmising that this is just her body's way of ridding the virus she has. Good Lord, the child almost put me into a full blown panic attack!!!

I need a new camera, most of the pictures I took before she got totally annoyed with me didn't come out clear...


Happy Father's Day!

I just want to say Happy Father's Day to three of the best dad's I know...my husband, my dad and my father-in-law. Aaron, thank you for all that you do for our children. You truly are the best dad and they are so lucky to have you. Dad and John, thank you for all that you do for us, for your love, your support, and most of all, for being so involved in our lives.





Aaron and Zach enjoyed some male bonding time over video games yesterday at Dave and Busters while Alex and I hung out back on the screen porch. It was a beautiful day and we enjoyed lots of snuggle time. Unfortunately she's sick again. I was feeding her last week while she was watching Zach and his buddy sword fighting in the kitchen. At the same time she went to eat a bite, she laughed at the boys being silly and inhaled her food and choked. The very next morning she started with a very wet cough and has been running 101 to 102 fevers. I'm not sure if she aspirated on her food, so we're just watching her really closely right now. She's getting 20-25 minutes of chest PT three times a day and she's on breathing treatments to try and keep her lungs clear. This morning she was "raleing" pretty bad, but she sounded better after her treatment and chest PT.

That's all I have time for now...A very happy birthday to my mom today!! Hopefully it wont be another week before I get to update again!

Tuesday, June 16, 2009

Harlie Caroline Holton

Today I took the train up to Washington DC to visit Harlie and Christy at Children's National Medical Center. Harlie's still in the Cardiac Intensive Care Unit recovering from her third major heart surgery (http://lifesinceharlie.blogspot.com/).

It was so good to see her when I walked in even though she was watching TV and completely ignoring me! It was great to see Christy too - we've seen each other weekly for the past couple of weeks and I missed her! She has the same sarcastic sense of humor I have and she's so easy to be around. I'm not going to say I don't know how she does it, because quite frankly I get uncomfortable when people say that to me - it's your child - of course you're going to 'do it', if there was an option to pick door number 2, all of the mom's in my club that no one wants to be in would have opted for that a long time ago! Anyway, I'm always in awe at 'how' she does it. Harlie's medical anomalies are so extremely complicated - yet Christy can recite more medical jargon than a 3rd year medical student and she has a way of explaining everything in the simplest form so you really get it. Do you know what its like to be away from your home and family for weeks and just sit in a hospital room alllllll day loooooong? Do you know that those hours feel more like days? Do you know what it's like to stare at your child laying helplessly willing them with all your might to get better while the whole time you're keeping your mind from wandering to a place that no parents mind should ever have to go to? If you're shaking your head no then you should consider yourself very blessed and you should go give your kids a kiss and thank God that they are healthy.

By the end of my visit I had Harlie smiling (of course I like to think it was me and not the drugs she's on!). And I'm sorry Christy, but I just have to tell everyone that I did get a kiss...and I'm the only one so far that's gotten a kiss since her surgery!

Here's a picture I stole from Christy because the battery died on my camera...uggghh! Just for Harlie to sit up for 2 minutes exhausts her. But, it was great to see her signing and see a small glimpse of her sense of humor coming through.


Keep your chin up Christy, you have no idea what an inspiration you are.

And hurry up and get better soon Harlie..we miss you and Alex will be anxiously waiting to see you and watch you point to her and sign her name.

Thanks for letting me visit today - big hugs to both of you.

Monday, June 15, 2009

Surprise!

So, another busy week! For the last month and a half we've been planning a surprise 65th birthday party for my mom...I have to say with a bunch of unexpected drama I really didn't think we were going to be able to pull it off...but Saturday afternoon, we totally surprised my mom, and I really can't describe how awesome it felt to see my mom when she walked in and realized the party was for her. She was SO completely surprised!! Her reaction was totally priceless!!! So well deserving for her. My mom is probably the most selfless, giving person I know...never expecting a thing in return. Every person who attended her party told me how honored they were to be invited - how special my mom was to them and what an amazing woman she is. We all know that about her and it was so nice to see all those people come to honor her. I'm so happy we were able to do this for her.





Alex finished school this week...she is now officially a second grader. WOW...I really can't believe how time is flying with her. She's had a few issues since she left the hospital, but hopefully we are on the upswing now. I'm so looking forward to summer vacation and having her rest and relax. I had the option of enrolling her in extended school year like we did last year, meaning she could go to school Monday thru Thursday for the summer, but I really felt like we all really needed some down time. We have an appointment to see a pediatric orthopedic specialist about her arm on June 23rd and hopefully we can get more answers on her arm issues. She seems to be doing better with that since we've had her arm immobilized, but she has her days. She's been on the go for a while now and quite honestly, she's tired! Last night we had dinner at my parents house and she was trying to fall asleep in her Uncle Dan's lap...something she NEVER does!


Zach is gearing up for Kindergarten...again, WOW! I can't believe my baby is going to school! He had his last T-ball game this past Saturday. Unfortunately I couldn't be there because I was getting ready for my mom's party, but he received a trophy AND the team's game ball. He was SO excited and told everyone at my mom's party that he got the game ball. He's been walking around with his trophy and ball since Saturday!

Monday, June 8, 2009

A Little R&R!

Last week we had our family beach week in Corolla, NC. It was so nice to get away - and the timing couldn't have been better considering how we spent the week before! Alex was feeling better and the sea air did wonders for her - she slept like a champ the entire week. I'm sure some of it also had to do with being so sick the week before and she was playing catch up. Despite some mishaps, vacation was great and I really enjoyed spending time away with my family. My parents cooked for us breakfast, lunch and dinner, and truly catered to all of us - I'm blessed to have such a caring family.

Zach had the best time playing with his cousins all week. He is NOT a fan of the ocean though! His cousins were riding their boards in the surf but this is how Zach opted to do it...a direct quote from him..."Now this is what I call surfing!"

"Surfing"

I asked him on the way home what his favorite part of his vacation was and he said spending so much time with all of his family. Sigh, that boy just knows how to go directly to my heart!

Pool Time!

Alex loved her vacation - she had her favorite man Papa with her all week, and water to splash in...life was good! My brother and sister-in-law took her out "four wheeling" on the beach and I wish I could have captured her face when she looked out the window of the car and saw the ocean right there. It was a real treat for her because none of the other kids got to go riding on the beach - just her.


Loving 4-Wheeling on the Beach!

Loving the Beach!



Zach learned how to swim without floaties! And boy was he a fish all week...!



video



I took over 200 pictures and wish I could post them all, but here are just a few...



MeMe and Papa with Alex on the Beach


My Mom and My Uncle

My Brother and Sister-In-Law


My Sister and Mr. Shane


Building a Sand Castle with Papa

One of my favorite pictures


Zach and his bucket


Fun on the beach


Cousins!


My two tired men!


Fun on the beach

LOVING the pool!!


Switching gears, our good friends Christy and Tom are in DC with their daughter Harlie today for her third open heart surgery...as you read this, please stop and say prayer for Harlie's speedy recovery with no complications, and strength for Christy and Tom - who we think are pretty amazing.

Harlie