Tuesday, August 24, 2010

Rested and Home

My sis and I had a wonderful trip. We spent the majority of the days relaxing. I finished "Schuyler's Monster", "Shut Up About your Perfect Kid", and started reading "Blue Sky July" again...because I love it.

We had great food, relaxing massages, scenic walks and runs, and were pampered by the pool in 105 degree heat. They laid your towels down for you, and refilled your waters without being asked. I could definitely have gotten used to all the fresh fruit and delicious coffee each morning and a big, comfy robe to lounge around in. My bed at home is pretty hard to beat, but this one came close...

But even though I was blessed with 3 nights of uninterrupted sleep, and great laughs with my sister, I was happy to be home. I missed all my babies.

Kamden started school on Monday. I missed the first day of school last year because we were in the hospital discovering Kendall had diabetes...but Grandad took pictures! His first two days of 4th grade have been great. Getting back in the groove of drop off, pick up, and finding energy for extra curricular stuff (Karate and guitar) has been challenging, but so far so good. Kamden also has a new desire to pick out his clothes and not cut his hair...hmh.

Kendall's in the throws of a busy week again. Her skills on the KidWalk are improving by the minute. She took several steps in the living room today and seems to be enjoying the upright position. I'm very ready for it to cool off so we can take her outside with it again. Until it does, pool time is front and center right now. She moves like crazy, and can usually tolerate the water longer than me!

Our drop in ratio begins next week. I have my work cut our for me changing all our recipes on the KetoCalculator and re-printing my binder full of current 3.5:1 ratios.

I'm glad to have some routine back in our lives. I'm definitely the type of person who needs structure to get things done! I feel like this summer was just a lot of fun and not very productive...but I guess that's what it should be :)

Now, bring on the fall weather.

Wednesday, August 18, 2010

Swallow Study

We loaded everything up and headed out to the swallow study that has been on the calendar for 3 months. Our SLP was concerned Kendall was aspirating on thin liquids, and wanted to have one done just to be safe. We thought there may be a possibility she would need to thicken her liquids. She had stopped working with Kendall on cup drinking because the past few times she was coughing after a sip...

I never stopped working with her on thin liquids ...

And Kendall's swallow study came back perfectly fine. I think it surprised everyone. The Dr. reading it has seen her before, and was very impressed with her progress. She has a very strong swallow. She didn't have any penetrations. The food went straight from the spoon down her throat. Her liquid went straight from the straw, pooled in the front of her mouth (a safe area) then went right down.

Once again, I left an appointment with a skip in my step, and a smile on my face!

We talked a lot about the swallow study with her the past few days. I knew she'd be nervous once we got in there, but I had explained what was going to happen. We decided in the room before hand it would be better for me to let her sip from a regular cup or drop liquid from a straw...so when I pulled out the sippy cup for her to try during the test, she had a meltdown. Thankfully it was right at the end! That's the last time I try to pull one over on her!

During the consult before the contrast study, she told the SLP from the hospital on her iPad "Goodbye" and "I'd like you to leave now."

I would have chalked that up to a fluke and her just pressing buttons, but it took three screens and crossing midline to make that happen! And she did it on her first try.

I think she's getting a bit of an attitude. NO IDEA where she gets that!?!?

I'm happy to end the week on a good note. It's the end of my week because my amazing, generous, awesome sister is taking me to Austin tomorrow for a spa weekend! I'm so freaking excited to spend the days without looking at the clock. I plan on relaxing, shopping, reading, running by the lake, and being pampered! All I have left to do is make Kendall's meals, freeze them, and get Kamden's stuff ready for school on Monday! Then I'm a free woman until Sunday!

Justin graciously took off work Friday to hold down the fort (with no ulterior motive whatsoever.....except that hunting season is right around the corner!)

Tuesday, August 17, 2010

UCP Pics

"Rejoice in your hardship, for from hardship comes endurance, from endurance comes character, and from character comes hope, which does not disappoint us." ~Romans 5:3

Saturday, August 14, 2010

Some days...

My cup overflows with love for and pride in my children. Other days I want to scream! Thankfully, we have had a couple of great days. I was unsure how my babies would do with such a busy weekend ahead, but they have both been amazing. I'm exhausted, but these memories will be forever, so it's so worth it.

I'll post pictures from the UCP walk later on, but right now I'll leave you with a video of Kendall...

Life is good.

Friday, August 13, 2010

So Proud.

I mentioned yesterday that Kamden had a guitar performance. I have to say I was one seriously proud mom! He gave me chills, and I was in awe of his bravery! He said he was a bit nervous, but I couldn't tell at all. He nailed it :)

I had to laugh though...he's such a boy. Totally and completely uninterested in socializing with the cute girls, all he cared about was eating the wings I wouldn't let him eat until he was finished, and playing video games in the arcade! He was also easily consoled with a snow cone when we had to leave early because Kendall had a diaper malfunction...

Thursday, August 12, 2010

Neglected Blog

My poor blog has been neglected. But I'm thankful there hasn't been anything major to report since my last post!

Summer break is coming to a close. Kamden has been busy at zoo camp, and I have been busy driving him around. Thankfully my dad has helped share the responsibility...so I can be here for Kendall's daily therapies.

Tomorrow Kamden has a guitar performance, and this weekend we have the United Cerebral Palsy walk, as well as a couple birthday parties. So the chaos continues!

I seem to have replaced my blog addiction with "Words with Friends." It is ridiculous how a stupid scrabble knock off game can take over my life! There's been no time for blogging or sweeping up black lab hair...(priorities!)

I have also found myself completely immersed in a book I ordered about IEP's. Since I have an elementary education background, I thought I had the gist of it, but my eyes have seriously been opened to a whole new world of legalities and rights. I also have learned more about IDEA than I ever knew existed. It has put a fire in my belly to advocate for others. I feel in my heart that Kendall will be fine. We are so blessed with a great team through ECI, and our school district. But it breaks my heart to think about so many children out there who are entitled to more/better services than they are getting because they don't have someone pushing on their behalf. It is overwhelming.

I'll try next week to keep up with the blog a little better!

Tuesday, August 3, 2010

Big News

Kendall's EEG was read immediately after it was performed. Our Neurologist was shocked to say the least. The right side of her brain was normal activity. (I couldn't begin to explain this...her right side has the larger cyst) All I know is there was normal "electrical activity." The overall EEG incredible. A miracle really. We were told Kendall would always have seizures, and at best, the diet would slow them down. Now they're gone. No hyppsarhythmias, no modified hypps... no seizures.

She wouldn't sleep, so we don't have a report on sleeping activity, but in the past Kendall's brain activity has been fine while sleeping.

Our Dr. was very impressed with Kendall's progress since we saw him last. She was showing off a little with her ipad, and putting on quite a show! I think she was just glad the EEG that she screamed through was over!

Since we've had a few questionable movements in the past few months, we have decided to watch her for one more month. Next month we go to a 3:1 ratio for another month, then a 2.5:1 ratio for a month, then we're off the diet by Halloween...

This makes me very nervous, but when a child is on seizure medication and has a normal EEG, they begin to wean off the medication, so we are basically doing the same thing.

The diet for Kendall has been our miracle...but unlike some kids who can tolerate it for years, it will eventually take its toll on her. It has already complicated her Diabetes control, so I have welcomed the idea of her being on a normal diet again.

Maybe, just maybe, she will start eating and drinking by mouth again. Her Dr. said he'd like to see her off the g-button. So would we.

I can't imagine a life where we can feed her bites here and there without worrying about a ratio. Sure, she will always be on a strict carb counting diet, but getting more than 9 grams of banana at a time is enticing! I may even entertain the idea again of getting on the insulin pump! (that thing has been in the box it came in in her closet for almost a year!) Sweet potatoes, pudding, jello, ooooooh....the possibilities are endless!!!

So, like I said this morning, exciting things are happening around here. (and apparently for our Dr. too...he said we were the second Infantile Spasms case that day to have relief)

We are so blessed. So, we got great news today. And I'm elated!

Play Dough

Kendall loves playing with play dough. She used to hold things all the time in both hands, but for the past 3 or 4 months that kind of slowed down. Yesterday she held play dough in her hands for about 30 minutes. She was reaching (even across mid line) to pick it up. She likes the smell...(check out the video below!)

In her high chair, she's started picking up toys and throwing them on the ground. When we pick them back up and place on the tray, the game continues.

I remember reading early on in this journey that CP kids tend to follow a normal timeline of developmental milestones...just in their own time. Kendall's recent interest in looking at herself in the mirror, playing peek-a-boo, holding out her pointer finger and pointing to body parts when asked, and now smelling (and trying to eat) play dough proves that to be true.

Each day is something new! It's unbelievable.

Today we are off to spend the day at the hospital. Kendall has an EEG, then a follow up with her Neuro to discuss the results, and talk about our next course of action. I'm thinking a very slow wean of the diet is in our future, but who knows. EEG's never seem to bring us good news, so I feel a little uneasy today.

The adventure continues...