Neurologist Appointment/EEG results

As predicted, getting all those EEG nodes on Shelby was a terrible ordeal, but somehow we made it through. She was so tired from screaming and fighting with us, that once the nodes were on, she slept through the actual EEG which is ideal for the study. Unfortunately, the EEG results showed several abnormal continuous spikes in Shelby's right hemisphere that were more frequent than in previous studies. Dr. Poplawski thinks this may have to do with the shunt revision, but Shelby's blood work also showed low Keppra levels. Hopefully increasing Shelby's Keppra dosage will help. We'll go back for more blood work in a few weeks to re-check her levels. Dr. P was impressed with Shelby's overall development and commented on how her hemipelegia (sp?) had improved since our last visit.

Appointments today....

Shelby goes to see the neurologist today for her first check-up since the shunt revision, and before that we'll do the dreaded EEG. Helping a technician to hold my screaming daughter down while they attempt to get a whole bunch of nodes glued onto her head in order to monitor brain (and/or seizure) activity is torture for Shelby and for me. The poor girl does not like to be messed with by medical people and I don't blame her at all....I hate that she has to go through stuff like this. Sometimes I want to indulge in a little "It's not fair" moping.... No time for that today though, I've got to go clip Shelby's fingernails to protect myself from her wrath during the EEG...

Raggedy Andy

Harding performed in his school's Christmas program on Tuesday. His pre-K class dressed up as Raggedy Ann and Raggedy Andy dolls. Harding loves any costume and wore this wig for the rest of the day. He did great in the performance and we were very proud of him...it is hard not to tear up while watching children singing--especially when one of them is your child. If interested, you can check out the YouTube videos linked to this blog.

Weight gain!

 Maybe its all the butter, the extra scoop of formula we've been adding to her whole milk, or the flax we put in her daily yogurt. Whatever it is, we don't care.....we're just happy that Shelby is gaining weight again. We went to see the pediatrician for Shelby's check-up on Friday and her weight had jumped to 24 lbs, 5 oz....she's broken out of the bottom 5th percentile!

We're back!

I'll admit it, I've had a hard time getting into the spirit of the season. We have been going, going, going since Thanksgiving with Harding's birthday, doctor appointments, work (as usual), and my final exams for grad school. We have put up and decorated our tree and the elf on the shelf has made his appearance, but that is where it has ended....no lights outside, no stockings hung, no Christmas china, Christmas snow village, or Christmas cards ordered at all. I have dropped the ball on creating holiday magic for my kids. There's still time though, right?

I turned in my last final this week and we are about to get serious about Christmas in the Kinnaird house. Tomorrow Harding and I are decking the halls, Trip is going to string some lights, we'll begin doing some baking and wrapping gifts. I plan to take the kids to the Grove Park Inn on Sunday to see the famous Gingerbread House exhibit.

And on Tuesday, the fun will really start. Harding's school Christmas pageant is that morning--Harding has been practicing the songs for weeks and I can't wait to see him in his costume (pictures and possibly a video to come soon). Plus, Tuesday is our last day of school and a break is long overdue. 

Also, there is a new Kinnaird on the block. Welcome to our nephew, Landen Taylor Kinnaird. He was born on December 12th and is a big (9 lb, 3 oz) adorable bundle of joy. You did very well Matt and Ashlee. We're looking forward to spoiling little Landen!

Funny anecdote: the kids were not allowed to visit their new cousin in the hospital. Harding was unhappy about this rule and told me earlier in the week, "Its okay mommy, I'll just wear my batman costume to the hospital, and they won't know I'm a boy. I know they'll let me in!" He was glad to finally get aquainted with Landen this afternoon.

Speech eval and Shelby singing!

Last week an evaluation was done on Shelby's speech and language so that she could begin speech therapy. The results of the evaluation put her in the 18-21 month range for both receptive and expressive language. She will begin speech once a week with the same therapist that works with her on feeding. Honestly, speech is not something that we are too worried about. I feel like a great deal of it will come on its own, but since she is already comfortable with this therapist, we thought we'd give it a shot.

She is getting better every day at expressing herself and constantly adding new words and phrases to her vocabulary. Just last night, I asked, "Where are you Shelby?" and she answered, "Here I am!" from under the train table. When we got home from school this afternoon and I was organizing the stuff I needed to bring in from the car, Shelby announced from her car seat, "Want out!". She amazes me constantly.

Shelby has always loved music and has been requesting (or demanding) that her favorite songs be sung to her regularly for about a year now. Recently, she has started doing some of the singing herself. If you can get past the scratched cheek, booger, and snot in this video, it is pretty darn cute. Without further ado, here is Shelby's rendition of Baa Baa Black Sheep:
Also, notice the use of lefty to help hold her Elmo doll!

Failed Christmas Card Picture Attempts

They don't have to have a picture on them, do they?

Sigh.

The little stinker...

who used to be in my belly....

and was so tiny not too long ago....

went and turned 5 today!

Where has the time gone?

We love him so much!

In which Harding attempts to climb the refridgerator.

Step 1: Magnets on feet.

Step 2: Feet on fridge.

Step 3: Step up.

Step 4: Try the other leg.

Repeat.

Something tells me we haven't seen the last of this....he really wants to be Spiderman.

Talking to your son about his sister's special needs.

We've been fielding lots of questions from Harding lately about his sister. He is starting to notice how she is different from other kids her age. For example, on Friday morning after we took Shelby to try on glasses (and she screamed the entire time) he said, "If Shelby is 2 and Riley is 1, how come Riley can walk and Shelby can't?" I answered by explaining that Shelby's brain works a little differently from most other people, and that because of this, she has trouble doing certain things like using her left arm and leg. I told him that it will take Shelby longer than other kids to learn to walk. I also told him that he could always ask me or Daddy if he ever had questions about Shelby because we would be honest with him. Harding was quiet for a few minutes and then he said, "I need to be honest with you about Shelby too, mommy.......she really does NOT want glasses!" Harding is always looking out for his sister, he told me he would get glasses instead of Shelby. Trip and I have said from the beginning that we would be open with Harding about Shelby. Here we go....

Conundrums

 Shelby has shown an interest in self-feeding during the past few months. When a bowl of apple sauce or yogurt (probably her two favorite foods) is placed in front of her, she will hold the spoon and feed herself slowly and deliberately. It is an incredibly messy process with lots of spoon banging and throwing (sometimes she even throws the bowl). This is good though....another move towards doing something independently. 
We are constantly in the process of moving Shelby's diet towards being more varied and textured. Gone are the days when she gagged when a piece of food was too big or the texture was unmanageable. She seems to be gradually getting the idea of how to chew. Baby Steps. We no longer use the food processer to blend up Shelby's food and are moving towards cutting the items that can't be fork mashed into tiny pieces. The idea is to slowly get the pieces bigger and bigger and to get her chewing and eating normal table food. Here's the conundrum: Shelby is still tiny for her age--in the bottom 5th percentile, she needs to be taking in as many calories as possible. We already add formula to her whole milk and butter/olive oil to all her food. Food is not a motivator for her....she eats cheerios, but would never pick them up and put them in her mouth if they were put in front of her (she would throw them one by one on the floor).
Working on independent skills like self-feeding is difficult for her...and it reduces her food intake. Working on maturing her diet and increasing calories is also difficult. Both focus areas can make mealtime difficult and stressful for Shelby. What is most important right now, or is there a way to focus on both? For now, we're trying to end her meals with a bowl of yogurt or apple sauce that she can work on by herself. Our OT and ST are consulting on this issue. Any suggestions?

Shelby and my great-grandmother Burney playing "boogedy" last week.

Then there is the potty issue...Shelby has started to regularly tell us that her diaper needs changing or that she is pooping. I have said all along that we would put off potty training for a good long time and frankly, diapers are the least of our worries right now. However, I certainly don't want to miss a window if she is ready. But Shelby can't get on a potty or even pull her pants down on her own, so it seems like we should wait. But if she is ready, am I shortchanging her?

beep beep

Shelby's teachers recently discovered that she will sit happily in the cars on the playground at school and even push herself backwards in them. This is good for many reasons: she doesn't have to be in the stroller, the teacher's arms, or being pushed in the swing during playground time....AND this is something she can do by herself (or with her classmates, like in the pictures). Plus, now I know one thing Shelby might like for Christmas!

Happy Halloween from Never Land!

Peter Pan and Tinkerbell would like to wish everyone a very happy Halloween!

This picture on the bottom cracks me up because Shelby is making the same face as the pumpkin. :)

Choosing pumpkins

Helping Shelby choose one:

Required photo-op:

No more pictures mommy! Can we just get these?

To be carved later on this week....

Duke visit last week

My mom and I took Shelby (and Harding) back to Duke last Thursday for her 1 month post-surgery appointment with Dr. Grant. We started the day with a CT scan which they attempted to do without sedation. That was a no-go. Shelby is still extremely afraid of being "messed with" (or even looked at) by people who resemble doctors or nurses since her recent hospital experience, despite the excellent staff at Duke going above and beyond the call of duty to win her over. After sedation, things went pretty smoothly though. Shelby was extremely sweet coming out of sedation--blowing kisses and saying "meow", "I love", and shouting "hooray" repeatedly.

We headed up to the Children's Hospital clinic after the brain scan to meet with Dr. Grant and get the results. Her brain looks good--the ventricles have returned to their usual size, (for Shelby anyway)--proof that the shunt is essential. I am so thankful that there is such a device and that we have excellent neurosurgeons to take care of business when a new one is needed! We go back to Durham in 6 months for another scan (this time an MRI) and check-up with Dr. G.

One more thing--Shelby is participating in a study at Duke about stem cell therapy and hydrocephalus. She'll be part of the control group of course (since we unfortunately didn't find out about Shelby's hydrocephalus in time to save her cord blood), but I'm glad that we can help with this important research that could benefit babies diagnosed with hydrocephalus in the future.

Thanks to my mom for driving down and back with us to Duke....I enjoyed the company and couldn't have done such a long day without her! And thanks to my sweet cousin Katy who has class at Duke on Thursdays and came by to hang out with us (and entertain the kids) in the waiting room....always good to see her!

Fall Splendor in WNC

It is flat out breathtaking here this time of year. Need proof? Check out these pictures taken at our land last weekend. One day we'll have a house with this view! I don't know who said this originally, but it rings true for me, "If you're lucky enough to live in the mountains, you're lucky enough!"

Harding took this picture of Trip and me, not bad!

Wooly Worm Festival - Banner Elk, NC

Last weekend we went to Banner Elk with the Gillilands for the Wooly Worm Festival, wondering what the heck to expect...it was interesting and the kids had a great time. We met up with MoMo and Bop at the festival and they were kind enough to purchase a wooly worm for Harding.
 

Aubrey, Shelby, Harding and Derek all bundled up and cooperating.

Posing here was the only thing that didn't have a price tag. The boys were happy to oblige.

Bop, Daddy and Momo help Harding pick out his Wooly Worm.

Here is where the worm races take place...they have to crawl up a string. Entering was 5 dollars, so we decided to have our own race later (for free).

Yikes...Festival Guy

Julie and I with the Wooly Worm Mascot

 Harding named his wooly worm "Super Speedy".  Derek named his "Captain America". When we got home later, Harding and Derek raced their wooly worms and then released them to the wild. Of course each boy thought their wooly worm was the winner...Harding is still talking about how Super Speedy really won. Although the adults were not huge fans of the festival, it was a beautiful weekend to drive through the mountains with friends--the leaves were at their peak and the Gillilands are always fun to be with.

H's performance

Our sweet boy singing LOUDLY with some of his classmates last Sunday. Have a listen, you can't miss Harding's voice. Trip and I were very proud of him.

Recent antics

I just can't help it....I think my kids are hilarious and adorable! If you are one of the seven people who read this blog, I'm assuming you think they're pretty funny and cute too.....(BeBe, MoMo, Nana, Grandpa Kinnaird, Granny and Papa Gene, and Nana)...

Shelby loves cell phones, but we won't buy her one because we think an iPad is ample technology for a two year old. Unphased, she has turned her foot into a phone. Flexible and creative! She puts her foot to her ear and says "Heh-yo".

Here's a sneak peek of Halloween. Harding was so excited when his Peter Pan costume came in the mail this week, but visibly disappointed that he couldn't fly when he tried it on. Luckily Daddy was there to help him out.

OT and PT this week...

Shelby's therapy sessions this week have been a study in opposites. I left work early on Tuesday to pick Shelby up from daycare in order to take her home for PT with Beth. Shelby fussed and cried and screamed the entire time and virtually nothing was accomplished. Although she did do some standing. I was incredibly frustrated Tuesday evening....these sessions are not free, and leaving work early is hard, so for the entire session to not be worthwhile because Shelby was grumpy did not sit well.

This may be the only time in the entire 45 minutes when she wasn't crying.

Today I was nervous because we had OT with Adam this afternoon, and I didn't want a repeat of Tuesday. Thankfully, she did great and showed off some crawling skills for Adam. He also worked with her on using both hands to hold and drink a cup.

Usually she gets mad when people "help" her, but today the princess was tolerant.

Using lefty on the iPad while Harding eats his afternoon snack.

Adam tried to get her to climb up the stairs to get a toy, but she wasn't sure.

After Adam left, I looked over and Shelby was climbing the stairs on her own....the little stinker! Not sure how I feel about this, we may be in trouble!

There she goes! Thank goodness we had a productive therapy session today. I think that Tuesday was just a fluke....everyone has bad days from time to time....