Monday, June 29, 2009

Summer update

So far in June, we've enjoyed VBS, swimming lessons, and Billy's 20-year high school reunion. June has turned out to be REALLY hot, so we've tried to keep cool. Outdoors, we've found some refreshing spots, and indoors, we've been busy with games, crafts, puppet shows, and costume changes. Vivian had her tonsils and adenoids out last Wednesday. She has been doing very well, so hopefully we can get back out and about very soon! She has been such a trooper. There were no tears until today. I had been seeing how she would do on less pain medication. She started hurting this afternoon and cried a little. Mostly, she just wanted me to hold her. She is such a cuddler! I love that girl!!
The boys have learned how to ride their bicycles without training wheels, so they've been tearing up the pavement! Rebecca almost has it. She balances really well, but we just can't get her to keep pedaling! I think she'll have it in a couple of more days! Nannie has been working with Rebecca on her reading. She is learning a lot of sight words and things are starting to click (I think); she definitely has good days and bad days with her attention.

Look out, Diana Ross!

Mmmm...these Logan's yeast rolls aren't bad.

Chewing in the sunshine.

Henry, the squinter

This water feels so good!

Vivian prances around.


Cold watermelon!

My ears glow with this backlighting!

Sunday, June 14, 2009

My littlest ones

Ellen is SIX months old! Time is really flying by this go-around. She's such a happy baby and she seems to be happiest when things around here are the craziest. She loves all the interaction with the other children. She's a little shy around strangers but she's such a flirt too!
She's weighing in at 15 lbs., 6 oz., and is 27.5 inches long. She has two teeth now.
Likes: waking up early, making growling noises when I'm happy, being tickled
Dislikes: riding in a carseat, being left in a room by myself

Vivian LOVES being a big sister. She calls Ellen her baby. Vivian is also all into whatever her big sister, Rebecca, is doing. She loves dancing, playing dress-up, and playing with her dolls. My sweet girl is going to be getting her tonsils out in a week and a half (because they are ENORMOUS and causing her to have sleeping difficulties). I dread that day but I know she is going to be a much happier kid when she can breathe again!

This is pretty much how Vivian is whenever Ellen is awake.

Saturday, June 13, 2009

Our Memphis trip (a week late)

Last weekend (after Billy had taken the kids camping for a night) we all traveled to Memphis for Billy's cousin's wedding. It was a rather interesting trip, not in that Ellen pretty much cried all the way there, or just going ANYWHERE with five small children, but that we missed the wedding right off the bat! We went cheap and decided to stay at the Marriott downtown (Priceline, baby!) instead of the Peabody, which is where the wedding reception was held. Anyway, since we didn't know exactly where the church was in relation to the hotel, we thought we would just ask our friendly concierge to help us. Well, we got directions to St. Mary's Catholic Cathedral instead of St. Mary's Episcopal Cathedral. Oh, well...we were told that it was a lovely wedding! Since we had some "extra" time before the reception, we took a tour of downtown in a horse-drawn carriage.

The reception was really beautiful and the kids had a great time, once the Blues band started playing. You should have seen William's moves! Ellen was exhausted after her day of crying, so one of us had to hold her the whole time. (She wouldn't go to anyone else.) So, sorry, no pictures from the reception. Before heading back to our hotel we took the kids to the roof of the Peabody to see the Duck Palace.
We managed quite nicely in one hotel room. The boys slept in sleeping bags on the floor, the girls slept in one bed, Billy and I were in the other bed, and Ellen slept in a portable crib. Full house! I'm glad it was only for one night!
Before going home, we took the kids to Graceland. (It was everyone's first trip!) They enjoyed it more than we thought they would! It was a fun day--not too much whining or fighting!

Down in the Jungle Room...

Dancing to the Wurlitzer..."Hound Dog," I think!

Henry loved the table we scored at lunch!

Ellen's first road trip

In front of the Lisa Marie

The rest of the story

Rebecca has epilepsy. The medical term now is seizure disorder, I'm guessing because the term epilepsy has so much of a stigma associated with it. We now understand that all of her prior "episodes" were associated with seizures...complex partial seizures that you may not necessarily be able to "see." A week ago while we were in the waiting room at her OT and ST appointments, she slumped down in her chair and had a generalized tonic/clonic seizure. It was so heartbreaking to watch her little body go through that. It seemed like an eternity before it was over. It lasted at least 30 seconds. When it was over, I had to pry her little hand from her hair. The staff at the therapy center called her neurologist for me, and she advised us to go to the ER and she would see us there. All Rebecca wanted to do was to lie down and sleep, so she didn't like me moving her to get to the ER, getting checked in, holding her until we were called back, etc. She was pretty combative. She just slept once they got her in a bed. I would wake her up to give her sips of Sprite. She vomited a couple of times after they gave her a popsicle. Her neurologist ordered an EEG there in the emergency room and then she came in to see her. I told the doctor what a bad morning we had had, the strange behavior that Rebecca was exhibiting and how she was not following through with anything I was telling her to do. She said that Rebecca was probably having seizures then, not able to process what was being said to her. There are occasions when she does this, so we are left to wonder if she has been having "mild" seizures more than we even realize. Rebecca is now on an anti-seizure medication. We are so hopeful and prayerful that it will stop the seizures and possible help her overcome some of her other issues--language difficulties, behavioral problems, etc.

Oh, how I did not want this diagnosis for her! I know there are many people with seizure disorder that live perfectly normal lives, but she has had so many obstacles placed before her already. I'm also thankful at the same time that this is something that we can manage, that there is medication for her condition. I have been thinking of all the children that suffer and die from horrible diseases like cancer, cystic fibrosis, muscular dystrophy...diseases that are far worse than what Rebecca has. And then I remember what Rebecca has gone through in her short life already. It is beyond my comprehension...not a life, but a mere existence without love. To me, that is the worst thing a child could suffer.

I have tried to do everything I possibly can to help Rebecca. I know I have obsessed about what new therapy to try, what to do next. I have been relying on myself and what I can do for her. Rebecca's new diagnosis has reminded me that I am not in control, that I need to turn that burden over to God. He will take care of her far beyond what I little I can do. And I am only able to do what little I am able to do through Him anyway! Help me by praying for her; pray for Rebecca to continue to grow into a loving, happy, confident, and independent young woman who is guided by a wonderful Savior!!