Saturday, January 30, 2010

Squiddly-dogs!

We found this idea in our recent issue of Family Fun Magazine, and last night Gee-off made them for the kids.


Simply push 4 pasta noodles through chunks of hotdog and boil them up - an instant hit!!!



Brenna chowing down (in her Cinderella headband of course!)

Drew ate his so fast, in this pic he had already moved on to the grilled cheese but wanted a pic of himself anyway!

Carter likes it! No surprise there! :)



In other news, everyone is finally feeling better. Unfortunately both of Emily's nurses got the bug too, and Emily has been having diarrhea for about a week now. It does seem to be easing up for the past two days though and we have a sample out to the lab just in case. I'm just glad we were able to keep things under control at home and keep her out of the hospital!!



Sunday, January 24, 2010

Sick of being sick...

So, we all took turns being sick this week with the 24 hour stomach bug. It hit some of us worse than others, but I missed work twice, Drew missed 2 1/2 days of school, and none of us ate a regular meal for dinner all week.

Emily is still on continuous feeds, gradually increasing volume.

This picture was taken during Carter and Brenna's "hangover". They'd been up all night, and finally could rest. If you look carefully, you can see that Brenna has her Fairy costume AND mittens and hat on under the blanket.

Wednesday, January 13, 2010

Keto Diet Anniversary

On this day last year, Emily was admitted to CHOP to start her initiation week on the ketogenic diet. You can follow this link to read my posts on how it all began. (Thanks to our fellow keto family for the reminder!!)







We had a very rocky start, the diet really caused her blood sugars to drop to dangerously low levels, and she got 2 stomach viruses in the first 2 months. Blech!! At that time, I was very pessimistic about any kind of success on the diet.







But once she was able to keep down the required formula, the diet began to work it's magic. Emily started having completely seizure free days in March and went SF for 103 days!! Her spasms have crept back on and off since then, but mostly off. We rarely see any spasms at all, and if we do, they are so mild we can hardly identify them!







Freedom from seizures has also made a miraculous difference in her development. Last year, Emily slept almost all the time. She was eating a bit by mouth, rolling some, and smiling more often. Now, she has much more awake time, she's holding her head up, her vision has improved - she focuses on objects and people and often makes eye contact, she is smiling all the time and laughing, she rolls, lifts her head up and props herself up on her arms while on her belly, she holds toys, puts them (and anything else she can get in her hands on) in her mouth, and in the past month she has started sitting UNSUPPORTED!!!!!! Unbelievable.







We are so thankful to the CHOP staff for continuing to recommend this diet and we're so glad we gave it a try. Emily has made such amazing progress and it is so awesome to watch her getting stronger and happier each day.


Emily
January 2009 (with my Aunt Nancy)



Emily
January 2010 (with Carter, Brenna, and Uncles Mark and Evan)











Thursday, December 31, 2009

2009 - Our Year in Review

Drew




This year, Drew started playing recreational sports. He started with T-ball in the spring and really enjoyed it. This fall, he played soccer and loved it. He was a real asset to the team! He spent his 4th summer at Tall Pines Day Camp where one of the highlights was singing "Take Me Out to the Ballgame" on the big stage for the whole camp! After graduating half day Pre-K, Drew moved up to full day Kindergarten and made the transition like a champ. He's doing extremely well in school, and is reading well above grade level - his teacher even has him helping to "teach" some of the other students as a challenge for him. Amazing. You know the teachers in us are so proud! This year, he has lost 4 teeth, had his 3rd set of ear tubes placed, and his adenoids removed. He had his first official birthday party with friends at a local indoor jump/bounce arena when he turned 6 in December. He also got to watch all 6 Star Wars movies with his Dad and is now a bonafide Star Wars fan! He continues to be a big help with his brother and sisters (most of the time) and really loves to play the Wii.






Carter




This year Carter has grown so much. Physically, he is still our peanut, and weighs the least of the crew. By the summer, we were realizing that he wasn't talking nearly as much as we thought he should be and within weeks of starting speech therapy, he started talking up a storm. And now, he's finally saying his own name, which he absolutely refused to say for quite awhile. He also started physical therapy because he was falling a lot. He has flat feet and drags his right foot a tiny bit because he doesn't bend his knees like he should. In the last few months, he is definitely falling less, and his balance has started to improve. He is still a fabulous eater - loves his veggies. There are really only two things I can think of that he will NOT eat. Surprisingly, they are macaroni and cheese and oatmeal!! He can count to 10, but won't say 4. He can repeat all of the alphabet letters and recognizes most of them. He knows some shapes and colors too. He is not quite ready for the potty yet. In fact, both Carter and Brenna were very interested in sitting on the potty for awhile. Then I told them that they would only get Smarties if they actually went in the potty, and their enthusiasm faded. :)




Brenna




This year Brenna has become such a little lady! She loves anything Dora, Diego, Princesses or My Little Ponies! She gets thrilled over shoes and boots, and anything "dancy" (fancy) or dress-up. She can also count to 10, and can say and recognize all of the alphabet letters. She has been right on target or ahead with all of her milestones and skills and has not needed any Early Intervention services. Brenna is showing signs of potty training readiness. She will sit and do #1 occasionally, and ver rarely #2, but we're working on it. :)





Emily









2009 was a huge year for Emily. She started the ketogenic diet in January, and has made miraculous progress! She has been mostly seizure free since March, having a few breakthrough spasms here and there. But changes to the ratio of the formula have helped. She started eating by mouth a tiny bit, right now she eats every other night (and gets the rest by g-tube). She continues to get both OT and PT services weekly and has really made some huge advances. She can hold her head up, roll, push up on her arms while on her belly, and most recently began sitting unsupported for up to 10 seconds!!!! Unbelievable! :) Back in the spring she was accepted into a program provided by the Department of Developmental Disabilities (DDD), and through them we have been able to get nursing care in our home, 6 days a week - 8 hours a day, to help with Emily's daily care (baths, feeding, medicines, exercises). This has been one of the biggest blessings of the year! The DDD has also supplemented our insurance to help with medical expenses and the cost of adaptive equipment. Last week, we just received a Tumble Form chair and a Squiggles stander. She is also having more alert time, more smiles and giggles, making eye contact sometimes, and even following us as we walk by!




Aimee and Gee-off






This year we celebrated 10 years of wedded bliss! :) We used our camper twice this summer and also took a road trip to Maine. Gee-off is still teaching 6th grade Math as well as teaching for the after school program. He also continues to give his Positive Discipline Workshop for camps and after school programs in NJ and PA on evenings and weekends. He was honored to present at the ACA Tri-State Camping Conference and the NJSACC Convention this year, and is booked to do both again in 2010. In his "spare time" he likes to host poker nights with the guys and fight bad guys on the Playstation 3. I have been able to remain a stay at home Mom this year and have been able to get Carter and Brenna out to daytime activities more often (thanks to Em's nurses and having Drew in school). I've also been more active in Mom's Club events and have been able to help out in Drew's classroom as well. I was so happy to get to go to 3 all day scrapbooking crops throughout the year and attended 2 major scrapbooking conventions. I've really been enjoying my Canon DSLR camera, and I just got some home lighting equipment to experiment with too. If only I could find some cute kids to take pictures of!!! :)
Here's to an amazing 2010 - Happy New Year!!


Friday, December 18, 2009

Christmas Card 2009

Merry Christmas everyone!!
I think this is my favorite Christmas card yet.
To all of our friends and family, your cards are in the mail and should be arriving very soon!
And to all of my "cyber" friends, this one's for you!
We hope everyone has a safe, healthy, and happy holiday and a wonderful New Year!
From top left, clockwise:
Emily, Drew, Brenna, and Carter
Drew - 6 years
Emily, Brenna, and Carter - 2 years, 4 months








Tuesday, November 24, 2009

Camping in November too?!

Ok, you got me, it was actually the first week of September! :)
We had so much fun camping earlier in the summer, that we went again and stayed for a few days longer during the week this time. This time, we chos Hospitality Creek and loved it!!
Emily was able to stay with us in the afternoons, evenings, and overnights, but got to go home and relax with her nurses during the day. This also kept her away from the mosquitoes and bees!
Our set-up: the pop-up camper, the corral (playyard with extra panels to enclose a play area for the little ones), and the picnic table with canopy. Looks good, eh?


Cozying up by the fire - Drew and Daddy

Mommy and Drew

(more pics of the campfire below - issues moving pics.)


The campground had a very large lake area with a shallow spot perfect for the kids. They loved the low dock, the climbing turtle, and tunnel slide. Maybe next year Drew will attempt the BIG tunnel slide and rope swing!
(more pics of the lake below - I couldn't get these in order and I've run out of time!!!!!)




They also had an amazing activity pool that we enjoyed everyday. It had zero entry all around one end where Carter and Brenna spent most of their time playing with the sprayers. The deeper area had some water guns and a lily pad course that Drew got to play on. So fun!!!!




More from the lake



Campfire pics of Drew and his cool clip on hat light and sweet little camper Em :)



Having some relaxing playtime at the campsite with Play-Doh (and we didn't have to worry about cleaning up the crumbs!!) We also brought that picnic table from home, it collapses and we strapped it to the roof of the VUE!!

There were several playgrounds to choose from, this one in the back of the campground was perfect for our gang.


We really had a great time!




The Boardwalk in November?!

Actually, we went to the boardwalk in August, but I'm just that far behind with posting the pictures!

Before school started, Gee and I decided to take Carter, Brenna, and Drew to the boardwalk to use up some amusement park tickets. Emily stayed at home with her nurse since we were going to be so active that day.
First, we stopped to enjoy some apple cider donuts. YUM!

I HAD to step on the beach, and Drew didn't mind posing for me. :)

Bumper Cars were the first choice for Drew.


Brenna was so thrilled with this race car ride, it was hysterical watching her! I posted a video of them on Facebook back in August, you really have to see and hear them in action to appreciate the full experience!



They had an "Emily" boat, but we couldn't get it fast enough! :(



Enjoying some lunch after all the fun - Carter





Brenna





Drew






Tuesday, November 10, 2009

We're the featured blogger!!!!

I'm so excited to say that We Could Not Ask for More is the feature Blog today at Multiples and More!

You can check out the interview I gave at the link above. :)