Strep

Kendall has Strep. She has been a little stuffy for a few days. Yesterday it was working its way down to her chest. Today we went to the Dr. because she was wheezing. I asked for a Strep test because her breath smelled funny. Low and behold, I was right. She was positive for Strep. She hasn't run a fever at all, and she is in really good spirits. She's even sleeping well.

So we are starting antibiotics and breathing treatments minus the steroid. Praying this does the trick and we can steer clear of the Pulmicort. We are keeping a close watch on Ketones. If they rise over 8 we will be in the ER right away. We're not messing around this time. Since she doesn't have a buffer, she can go from fine to DKA in about an hour. We were told to head straight to the hospital so more detailed Ph labs can be drawn if things get high.

So, it will be an interesting evening around here tonight. Xeoponex makes Kendall crazy and hyper. But she needs it to breathe! The antibiotic has already upset her tummy. So I don't expect her to sleep much...And I have a huge headache again. Ugh.

Please pray for Kendall as well as Caleigh. (don't think Holly's posted yet....but lets just say Caleigh is a one upper for sure...poor baby and poor mommy and daddy. When it rains it pours.)

Reading.

Kendall loves to read. When she is arching her back, or wailing in her stander, all she needs is a good book to calm her down. (ok, its not really that simple, but close)

She does love to read. I know she listens intently. I'm not sure if she sees the pictures, but she definitely can see the pages. She tries to turn the page in the book when prompted. She also laughs at the same part of Dr. Seuss books every time. So, I think there is some comprehension going on.

She mostly loves Kamden to read to her. He has the fluctuation in his voice to keep her attention. He is very patient and will sit there reading a pile of books to her while she's in her stander or on the floor.

I love that she is interacting so well socially. But I sure do wish she could entertain herself a little. It is exhausting having to stimulate her every.second.of.every.day! I just wish she could sit down on the mat and play for 5 minutes by herself! Please tell me that will happen one day!

Sunshine After the Rain

We have had a number of really gloomy days here of late. I can't stand it. I can't run in it. I can't take Kendall out for walks. I can't get my stupid dogs to use the potty outside when it's cold and rainy. I hate the rain. And I hate the cold.

Yesterday my phone pooped out and I had to head to the mall area where they could repair it. I used to hit all the large department stores and mall areas daily when I was working. Most of my accounts were in or around the best shopping centers in Dallas. Needless to say, I shopped a lot and was really up on all the latest everything. Yeah. Not so much anymore. I feel like I have no style AT ALL. I don't even know the latest tunes on the radio. Music used to get me through the day. Now the only new songs I hear are on commercials or background music while watching tivo'd The View's or Chelsea Lately's. Kendall has monopolized my radio on drives to appointments! I'm turning into a nerd.

Anyway, I had to kill time while waiting for my phone to get fixed. I stopped by the Gap to see if they had any good sales. Bad idea. I felt completely out of the times walking through there. Reminded I need to...at some point...get back to a pre-baby body. And everything in my closet is out of date. Blah. Anyhow, looking through baby clothes was even worse. I saw a super cute pair of golashes with polka dots. Then I lost it. I literally stood there and cried. My sweet Kendall can't splash around in the rain. She's almost two and can't roll over on her own. She can't wear those boots and enjoy the things most kids her age do. I don't have a job anymore and can't buy anything I want. It sucks. And its not getting any easier and that pisses me off. Bad.

But today we had some sunshine. Now I feel a little better. I hate that I still go through these types of weeks. I have a ton to be grateful for. I know that. And I get very frustrated with myself for these feelings. I also know myself well (obviously.) I know that even if Kendall were completely healthy and I had a job, I'd be complaining about not having enough "me" time or having to work harder some days and not being able to spend time with my kids. I'd probably be griping that she was getting into everything and I was always picking up toys or something. I don't know. It's all relative.

We have to play the cards we're dealt, I guess. So I will. Speaking of cards...my good friends are all in Vegas this weekend. I'm sad I couldn't be there...but hope they are safe and win lots of moola.

My friends are amazing. I love them so dearly. I couldn't get through a month without our bunco nights or girls night outs. Thank you girls for loving me even though I've been such a flaker lately!! I promise to snap out of this funk at some point :)

What Does Kendall Eat?

Eating for Kendall has always been a strong point. Er, up until the whole not eating thing, and g-button insertion.

Anyway, we continue to offer her foods. This isn't always easy. I have spent a small fortune on organic products, and hard to find items (coconut flour and coconut oil...to name a few of the most recent scavenger hunts I've been on!)

Some days she'll eat. Some days she fights. But I can usually get at least one 100 calorie meal down her. She's really open to all textures and tastes. Before the Ketogenic Diet we would season her foods with salsa and lemon juice! The girl loves flavor. Since starting the diet 7 months ago (yes, 7 months have passed!) she has decreased in the amount of food she'll eat and what. We used to think it was because we were hiding meds in the "egg nog" and scared her away. Now I just think she's sick of the same greasy meals. She used to eat broccoli and beef and mayo like a champ, and chicken ranch and green beans were also a favorite. Now she won't touch either one...

So I have made a few new recipes with the new ratio. She loves egg and cheese omlets (pictured above) and has a new found love of kiwi (also pictured above) AND...I just introduced her to chocolate in the form of fudge (pictured above) The eggs and kiwi are one example of a 100 calorie meal. Hidden in the eggs and cheese are cream and olive oil. The wine, of course, is for me. It is a necessary ingredient for me to keep my sanity as I spend a ridiculous amount of time measuring out a 3.5:1 fat to protein and carb ratio.

Some days I resent this stupid diet for taking so much time and being soley responsible for her losing interest in eating (and drinking completely!) Then I remind myself we are only on one daily seizure med. Her alertness and development are soaring, and she only has about one seizure cluster every 2 weeks instead of hundreds a day. So I can live with searching out approved chap stick, lotions, shampoos, and fever reducers. It does work. And it is totally worth the time and effort. And had this diet not worked, we would have tried ACTH next. It would have killed her for sure considering her last reaction to a tiny steroid with Diabetes. So this diet has saved her in more ways than one.

She had seizures late this afternoon...but they are gone now. (she's pretty predictable. the last ones were 2 weeks ago to the day.) They never get easier to watch. ugh.

Barnes and Noble Storytime and Craft

um, yeah. Kendall didn't like it so much. The lady was pretty expressionless, and coloring has always been a bit over-rated in my book too.

Though Kendall wasn't very impressed today, I don't regret going at all! We were delighted to see our dear friend Caleigh getting back to her old self again. (and Holly too) When we arrived, I had to laugh that we dressed the girls in the exact same dresses. How does that happen!?

Anyway, I think today is the first of many new outings for the girls. So what if they couldn't care less...play dates are for moms anyway! Everyone knows that.

There's absolutely no reason why we can't join in on all the fun normal kids have right? Who knows, maybe Kendall will learn to like her chair sitting still one day! One can dream.




After story time we picked up her new glasses. They are actually thinner than before. I guess the number is higher, but before she had a huge astigmatism and now she doesn't...something like that. She seems to be seeing out of them really well. So that's good news.

Everything else is going well. Between our nurses being sick and several of K's therapists being sick, we've made out pretty well so far. Knock on wood.

Hope you all are having a great week!