Chicken Pox

I have it on good authority - from my mom friend that has three kids - that Sofie has Chicken Pox. I know!

It's very, very mild and doesn't seem to bother her at all. In fact she had the first one on her cheek this weekend, and we just thought she had gotten a little teeny bug bite. Then over the next couple of days, one showed up between her eyes, one on the inside of her elbow, one on her tummy and one on the side of her trunk. Yep, that's it.

I showed them to my friend this afternoon, and she told me what they were. Yikes! So apparently she's had them now for about 5 days, so I'm hoping they've peaked and will only start getting better now. Now I just have to warn the other moms whose kids we've possibly exposed. Ugh! I'm SO SORRY!!!!

Happy Birthday, Aunt Aimee!

I'm late getting this up, since Aimee's birthday was Sunday, but I still wanted to post it. We celebrated Sunday since Aimee is staying with us right now. She moved in this month, and we're so happy to have her here. Sofie is especially excited to have her Aunt Aimee here to play with!! Happy belated big 3-0!!

July Adventures...And a BIG First!

We kicked off July with a trip to visit Sofie's Grandmas and Grandpas and my aunts and uncles. I don't see my aunts and uncles together very often, so it was really nice to get to see them. Wish I could have visited with my Aunt Mary and Uncle Ed more, and we missed you Aunt Lori!!

I wish I had taken more pictures. After we got home I realized I don't have any of Sofie with my Uncle Bob and Aunt Marvel or with my Aunt Sandy and Uncle John. What was I thinking!?! That just means we all have to get together again soon!

Sofie had so much fun and got to see her Uncle Mike, Aunt Tiff, and Uncle Kris too. She also got to see both her Great Grandpas and watch fireworks. Here are a few pics...




Can you feel the excitement?





Sofie loves playing with her Great-Grandpa. My mom brought out my old desk that my Grandpa M. got for me when I was a kid. Sofie loves to sit and color at it like a big girl.




Sofie with Uncle Kris, Aunt Tiffany, and Great-Grandpa Tucker before the fireworks show. Before fireworks, Uncle Mike's football team was grilling burgers and dogs out on the golf course.




Sofie surprised us all by taking her very first (assisted) steps on the golf course!! Before this she had never shown any interest in attempting to take steps. We've been working on it in therapy, but she hadn't ever been interested in trying it. Usually when we stand her up to try to help her take some steps, she just pulls her legs up and sits back down to crawl. She doesn't like the feel of grass and we were out on the golf course. When Kenny stood her up, she didn't want to get back down on the grass to crawl, so she just decided to take steps instead. She was so proud to be stepping around like a big girl!!




4th of July fun




Showing off her new skills for everyone. Doesn't this face say it all?!?




Hanging out with Grandma Linda, Grandpa Steve, and Great-Grandpa Troxel.




Meeting Great Aunt Mary




Sofie with some of her Great Aunts and Uncles. And, what's that? Smiles with Great Uncle Roger?!? I have proof!




Sofie loves to sit in my old rocking chair (ahem, HER rocking chair) at Grandma Linda and Grandpa Steve's house. She was rocking her baby and showing Grandma and Grandpa how she feeds her.




...and how she sometimes throws her on the floor. We need to work on that.




Sharing is good.




After our fun 4th of July weekend we came back home, and then Sofie had a hot date with Lucas at the zoo. Does he look psyched or what?




Mesmerized




Of course, she had to show Lucas her new walking skills too.




Then last week, Grandma Linda came up for a visit and we went to Deanna Rose Farmstead to play.




Getting to be such a big girl.




Feeding and petting the goats is always a big event.




There are so many fun things for her to do at the Farmstead.




She had so much fun exploring with Grandma Linda. Afterward she crashed for a long nap while Mommy and Grandma ate lunch.

So far July has been packed with fun for Sofie. We are so excited at her new interest in trying to walk. A couple of weeks ago she was playing with Aunt Aimee, walking around holding onto Aimee's hands. When Aimee let go, she stood there for a second and then took 3 steps on her own!! Of course she wouldn't repeat it for the video camera, but we were really excited! Daddy was working and missed the big event. ;-(

I feel like any day now she's going to take off and walk across the room. I can't wait for her to start walking. People always ask if she's walking yet, and I say no. And then the standard response is, "oh just wait, it's all over after they start walking." I SOOOOOOOOOO don't get this comment. I know it's just a standard thing people say, but when she walks it will be a huge deal for us. And for the record, it's actually all already over since she started crawling back in February. Being able to walk will just make things easier for me and more fun for her. Ever tried to use a public restroom while holding your toddler and keeping her from touching all the gross stuff in the bathroom stall. This takes skill. So we will most definitely be celebrating when she's running around on her own!!

June Recap - The Fun Stuff

So now that you've read The Meat and Potatoes, it's time for The Fun Stuff.

Kenny and I both kicked off the summer with separate trips to Vegas for bachelor and bachelorette parties, respectively. We both had a blast, but no - neither one of us woke up with a tiger in our room, or a mystery baby named Carlos in the closet.

Now flashback to...well I won't say. But when Kenny was 4 months old, his Mom and Dad took a trip to Vegas and brought back some pants for Baby Kenny to wear. Miraculously Kenny's Mom found them, and Sofie could still squeeze her wee baby behind into them. I give you Exhibit A:

Priceless! And to clarify, that does indeed say "crappy" at the bottom all stretched out. And those are dice. Those pants are holding on for dear life. Love it.

It got H.O.T. hot here in June, so Sofie and I became pool rats. We hit several area pools while I searched endlessly for one of those cheapo, hard plastic kiddie pools. You know, the ones that you see every single year of your life that you have absolutely no use for until you have a toddler that needs a pool, and then POOF! they're nowhere to be found?!? Yeah those.

So after more Targets, Walmarts, Big Lots, Lowes, Home Depots, and Dollar Stores than I can count (and probably about $75 in gas), I gave up and bought an inflatable pool - which I expected to last about a week before becoming a victim of one of our water-loving, pool-popping pooches. I was pleasantly surprised that it lasted two full weeks.

That fateful morning I had just filled it with sparkling clean water and then dragged the hose around to the side of the house, only to return approximately 45 seconds later to a completely brown pool with a skim layer of dog hair on top. And a wet Lola laying on the deck. Geez I wonder what could have happened.

Luckily, the day after I had given up and bought the inflatable pool, my friend Erin had spied some of the coveted hard plastic pools at a Walmart about 30 minutes from my house. It had been two weeks. We needed to move fast. We drove out to that Walmart, hoping to snag one, but they were sold out. Of course they were! BUT they called another Walmart and they had some, so we drove on - through construction, during rush hour, and past two accidents. At 5 miles per hour. 3 1/2 short hours after leaving our house, we returned with one hard plastic kiddie pool. That was about two weeks ago, and since then it has rained almost every day, so we have yet to swim in it. Here's a little slideshow of Sofie's pool time. Pics follow that you can click on to enlarge.

Next up...July Adventures!

June/July Recap - The Meat and Potatoes

So much has been going on in the last month or so, so I'm going to recap June and July up to this point. Here's the dish on feeding...

After Sofie's surgery at the end of April/beginning of May, she really took off with feedings. She was sucking down 6+ oz bottles like never before and getting back on the solids bandwagon. For the month of May we were experiencing feeding bliss. And after the many many months of struggling with feedings, it was WONDERFUL!!! It was like we'd finally made it to the promised land.

Then as May ended and June began, feedings started to go South again very slowly. It was like one day she just decided she might like to refuse a bottle again for old time's sake. Then the next day she wanted to squirrel around and would take her bottles better while asleep. Yes, the old sleep feeding habit was creeping it's way back in to our routine.

She'd get a little worse with feedings then would level off, then a little worse again, and so on until she went from 28-30 oz/day to 20-23 oz/day. And solids were hot and cold. This change happened slowly over the entire month of June. Toward the end of June we did notice her bottom gums were swollen on both sides and it looked like she may be trying to get some molars. So that looked like the prime culprit, but we were still very nervous, since Sofie's main sign of rehernation has always been feeding difficulty.

The other thing that really concerned me was that I can no longer hear the crisp, clear lung sounds in her lower left lobe like I could the month after surgery. Her breath sounds are slightly muffled in the lower left lobe, which combined with her feeding change was really stressing me out. Despite the change in breath sounds, she hasn't had any change in respiratory status. Her sats are still the same (upper 90's all the time), and her respiratory rate is still in the 30's with no increased work of breathing.

When the feeding situation wasn't any better by the first week of July, despite pain meds for teething, I decided I wasn't messing around and took her in for an xray and an appointment with her surgeon, Dr. S.P. Her xray looked "stable", but it did look different than her post op xray two months prior. This xray showed her left diaphragm slightly higher (hence me not hearing crisp breath sounds there anymore), but still appeared intact with nothing in the chest that shouldn't be.

I was looking for peace of mind by taking her in for this xray and with any change at all, I just don't have that peace of mind I was looking for. Given the fact that reherniation hasn't shown up on several of her previous xrays when she was actually reherniated, I just don't trust anything but a CT if anything seems off. But I really, really hate subjecting her to that much radiation unless it's absolutely necessary. She's already been exposed to Lord knows how many millions of rads, I'm surprised she doesn't glow in the dark.

Dr. S.P. said that since she's now two months post op, she is just getting to the point where everything is healed internally, so it's not a huge surprise that she looks slightly different on xray now than she did two months ago. Also her new diaphragm is now an actual native muscle (her latissimus dorsi flap), and it has the ability to stretch and give a little, whereas the patches she had before held taut and stayed in the same position - or should have, had they not failed. Her diaphragm may have just now settled into the place it's going to be. I explained the current teething situation as well. He decided that given the teething factor and that she hasn't had ANY respiratory changes at all, it would be best to wait and see if things got better before proceeding on to a CT for a closer look, and I agreed.

That first week of July her first molar popped through on the bottom right and the bottom left molar is close behind. We are really hoping that after these molars rear their ugly heads, her eating habits will return to the way they were in May, and we can breathe a little easier.

Her weight had gotten up to 19 lbs, 5 oz. on July 1st. By the following Wednesday she was down to 18-13, so we decided to restart her Periactin. This was the appetite stimulant we started toward the end of Peetie Unplugged. She took it from Jan 15th-April 15th. We restarted it July 8th. The first day of taking it, her intake spiked up to 29.5 oz and has continued between 28-31.5 oz/day. She gained 15 oz in the first week of restarting her Periactin - almost a whole pount in just 1 week! I weighed her Tuesday night, and she was 20 lbs even!!!!! Woohoo Periactin!

She's also eating solids more consistently the last couple of weeks. She loves plums and peaches right now and will eat a whole days worth of fruit in one sitting easily. Still not a fan of veggies, but I'm not giving up. So for now we're trying to get through this molars speedbump and hope everything returns to normal soon.

Ahhhhhhhhhh

June 6th Sofie started drinking from her sippy cup on her own. Just wanted to post this date so we'd remember when she did it. She takes a few sips here and there. She's slowly getting better at it, but doesn't drink enough to really count it as part of her daily volume. She's so proud of herself for doing "big girl" things! (and so are we)

Here are some pics from lunch the other day...



There's a party in Sofie's tummy.




Yummy! Yummy! I love Pirate's Booty!




Double Fisting




Lurkers




Big Bite




Notice my main pal still hangin' around.




Oh, sweet heavenly. Cheese coated fingers...




What a tease. Wonder where they get such ideas that they may get a bite?




Doot Dee Doo




Don't listen to your Mother, Sofie. Resist the urge to be a good girl and throw that on the floor now!




My strategy is to stay as close the floor as possible, so I'm ready to strike at any moment.



Since Sofie's been successful with the sippy cup, as well as with open cups and even bottled water, we're trying extra hard with the straw again too. We brought out the old honey bear with the straw to give that another go, but so far it's entirely too much fun to throw it on the floor, to consider drinking out of it. Notice her reaction BEFORE she throws it. Stinker.






She's really liked my big water mugs with the big plastic straws in them for a long time. Every time she sees me with one, she has to "take a drink" too.




So you know when you take a huge cold drink on a hot day and you're all refreshed and after you swallow you let out a big "Ahhhhhhhhhh"? Well apparently I do that a lot, because Sofie has picked it up, and she does it a lot after she takes a drink. Even with pretend drinks. Observe.






Occasionally she does actually drink some and she loves it. The problem is that when you give her the mug to take a drink, she NEVER wants to give it back. Then you have tears.





And kiss refusals.

Thank You

We want to thank everyone who sent out their blue Letters for CDH last Wednesday. Kellie set up a poll on the Letters for CDH blog for people to let us know how many letters they sent out. So if you haven't participated in that poll yet, please head on over there and let us know how many letters you sent. As it stands now, we roughly estimate that somewhere between 2200-3300 letters were sent out!!! That's just amazing! Think of how many people we've educated about CDH that had never heard of it before, just by sending these letters. I also want to send a special Thank You out to my friends at work who sent 400 letters out in honor of Sofie. You guys rock!!


Sofie "in" all of her letters just before we packed them up for the post office.






Sofia's CDH Story DVDs with the same slideshow that is now at the top of the blog.



Cards enclosed in our DVDs



All packed up ready for the post office.



DVDs ready to go.



Getting everything ready the night before. Aunt Aimee and I were working. Sofie was supervising, and testing the durability of the DVDs by throwing them on the floor.