Tuesday, December 30, 2008


We had a very Merry Christmas! Santa came, family came, and our house looks even more like a Toys R Us. :)

Everyone got lots of wonderful gifts, but we also got SICK!!

At Drew's last pedi visit, he was put on Albuterol liquid for his cough that he's had for almost 3 months now. The doctor said he sounded junky in his chest where he hadn't before. But it didn't seem to be helping.

The day after Christmas, Carter, Brenna, me, and Gee-off were all feeling terrible. We went to Urgent Care and Carter got on antibiotics for an ear infection, Brenna got antibiotics and so did Mommy and Daddy for sinus infections.

Then today, I decided to take Drew back in for his cough, plus his nose is still dripping, and he had a bit of a temp on Saturday. Well, the doctor takes a look in his ears and says he's got an ear infection. Then he listens to his cough and says he's got walking pneumonia!!!! So he gives him a nebulizer treatment right there and 2 other prescriptions for an antibiotic and an oral steroid. Neb treatments for about 3 weeks. We go back on Friday for a recheck.

Let's hope the germs go away soon!!!!!! Please?

Friday, December 19, 2008

Dear Santa,

I'm writing to thank some of your generous "elves" who took some time out of their very busy schedules to send us a very special gift. We appreciate it so much and are happy to say that there will be a few more goodies under the tree for our little ones that wouldn't have been there otherwise.

I sure hope your "elves" have access to the internet to read our blog, since we have no other way of thanking them. They went out of their way to disguise handwriting, postmarks, etc., in an effort to remain anonymous! :)

Thank you again!!!

Wednesday, December 17, 2008

A day out with Drew

Gee-off and I got to spend the whole day with Drew! We don't get to do that very often, so it was a treat for us too really. First we went to the Please Touch Museum in Philadelphia. It just recently moved to a brand new location in Fairmount Park and it was so much fun.

Captain Noah's puppets

Elephant toy sculpture

The beautifully refurbished carousel

Fill er up!
The human hamster wheel
After the Please Touch Museum, we headed over to the Museum of Natural Sciences. Of course, Drew wanted to see the dinosaur bones. And you'll see below that he got to actually dig for fossils himself too.
Ahhhhhh, T-Rex!
The Big Dig
There was also a butterfly conservatory (kept at 80 degrees and 80% humidity - eck!)
where we saw some pretty butterflies flitting around.
This is the amazing Amazon butterfly, the largest in the world!
Just kidding. :)

Saturday, December 13, 2008

Happy Birthday Drew!

Drew is 5 today!!!!!!

We were out celebrating all day so i'll be back to post pictures of our fun day later!
Happy Birthday Buddy, we love you so much!

Thursday, December 11, 2008

Emily and the wonderful, fabulous, so good, very great day!

Okay, actually we have had a few of these days, so let me back track a bit!

On Tuesday night, after her last bolus (timed) feeding of the day, Emily was spending some time playing on the floor. By 9 pm, she's got the whole living room to herself! So, she has been rolling on to her side (her right more than her left) for awhile now. During therapy we have been practicing going all the way over and a few times she has gotten almost all the way there but her right arm gets pinned underneath her, stopping her from making it completely. But, this time, she made it! Now I was sitting right next to her (watching Biggest Loser), looked at her on her side, looked up at the screen, looked back at her and she was on her belly! Wooohooooooooo! :)
Yes, I missed it! But I got lots of pictures while she was on her belly. ;)

Last night, she did it again! I missed it again too!

Now tonight, I watched the whole thing and took pictures! But she decided to step it up a notch this time. Once she was on her belly she fussed to get back onto her back. Once I put her on her back, she went right over onto her belly, fussed to go back, rolled onto her belly, fussed to go back, you get the idea! She did it at least four times. Go Em!

Oh, but that is not all!
She has also been doing more with her mouth lately. She constantly has her hands in her mouth, and she started sucking, actually sucking on her fingers and thumb! She will tolerate me cleaning her mouth with the oral swab now and has even grabbed it. We've been giving her little tastes of things with flavor like candy cane, lemon, chocolate, sweet potatoes, etc., and she hasn't been choking. She's even been putting her hands in her mouth afterward like she's looking for more.

But at the last feeding team meeting in September, they said they didn't want to see her back until she was more stable because she really wasn't doing well then (actually she just had a cold and was sleeping during the appt.). They wanted her therapists to give the ok for any further feeding trials. Well, her therapists wanted the ok from the doctors. What to do?

At her GI appt. I asked her doc if he thought we should try a test he had suggested a while ago, before she got her g-tube, called a modified barium swallow study with speech. This test would involve taking an xray of Emily's throat area while she is being fed various foods/liquids by a speech therapist to see if she is aspirating anything, and check her suck and swallow. He thought it sounded like a good idea and sent an email to one of the speech therapists and someone would call me when it was scheduled.

Back to Tuesday. I get a phone call from the hospital to confirm Emily's appt. for her swallow study on Wednesday!!! That was the first I had heard of the actual appointment, but I jumped on it and luckily Grandmom was able to come watch the rest of the kiddos so we could go!

We got there in plenty of time - even though the South Street Bridge is now closed for 2 years and I had to find another route - and they took us in right about on time! There was a problem with the prescription for the test from the doctor so we had to wait almost 45 minutes once we were in the radiology room. But I met the speech therapist who would be feeding Em and she was super sweet! She explained everything she would be giving her and I filled her in on Emily's history since we had never met.

And then it was time. Emily was sitting in tumble form chair (think extra large reclining Bumbo seat) next to the xray machine. The ST (speech theapist) gave her the pacifier and she started sucking. Then she gave her a spoonful of honey consistency food with barium so we could watch it go down her throat on the xray. She sucked it up and swallowed it right down! She took at least four more spoonfuls and looked like she loved it! The ST was happily surprised and I - well if you know me by now - I was crying. So proud of my little girl! And I just knew the ST was going to tell me I could feed her again!

Next she went for the bottle, a special squeeze bottle. At the first squeeze, Emily refluxed and a bit came back out. But the ST tried again and she took about 3 more squeezes and swallowed them fine! Yes! More tears from Mommy, who by now couldn't speak but just nodded and smiled at the ST, radiologist and tech who were all thrilled by what they saw.

And she said what I had been waiting for - "She can eat!"

The ST didn't do any more. She told me she was satisfied that she could handle honey consistency foods and formula. She recommended to try food once a day, just a few spoonfuls. We have to start slowly. And just a bit from the bottle.

Now that's a good day! :)

Emily had about 6 spoonfuls of yogurt at dinner time tonight and did great!

Tuesday, December 9, 2008

Firehouse Santa

All the kids got to sit on Santa's lap and each received a gift especially for them!

Drew: Look where?!
Emily: This is OK.

Brenna: I like this wrapping paper.

Carter: Get me outta here!!!!!!!!!!!!!!!!!!!!
A baby stroller for Brenna

An army truck with two army guys for Drew
Candy canes are yummy!
Happy Carter (before Santa) with Daddy

A special thank you goes out to PopPop Frank for including us in this celebration at the firehouse!

Wednesday, November 19, 2008

Give Peas a Chance

The latest on Emily

Emily has been doing very well. She is continuing to make progress with her physical skills. She is tolerating more tummy time and lifting her head up while she's there. Her head control and trunk control are improving when practicing sitting, and she's been having alert/"playtime" consistently between 1pm and 11pm almost everyday. She is sucking on her fingers and hands more, and will even tolerate my finger, a wash cloth, or an oral swab in her mouth sometimes. Her spasms are happening regularly once or twice a day, which is very good for her. The doctors' next recommendation is to start the ketogenic diet, which for Emily would be a ketogenic formula through her gtube. It requires parent classes (I took the first one already) and a 5 day hospital admission to formally start. And with Emily's low blood sugar issues and high calcium issues, she will be watched even more carefully. The doctors seem to suggest that the keto diet has the best chance of working for her. Where anti seizure medications are only 20-30% effective, this diet is said to have a 60% chance. So I am hopeful, though not so optimistic. The percentages given during class were more like 13% of children in the study with IS became seizure free. 13%? Anything is worth a shot at this point. So we are getting our homework ready and hope to get Emily admitted to start in January.

Here she is sleeping so peacefully on her belly!

Working hard sitting during PT (Physical Therapy)
She gets tired or overstimulated very quickly during sessions and falls asleep or closes her eyes when she's had enough.

Lifting her head all by herself on Daddy's chest

Little snuggle bug

A fun one of everyone on the couch!

And the "ghost" pumpkin!

Friday, October 31, 2008

Happy Halloween!

All aboard The Pony Express!
Little Horsie Emily

Carter galloping around the driveway

Spaceman Drew

Brenna, Grandpop, and Drew

Help yourself! :)

Daddy's Little Devil
(that's what the shirt says - we know she's an angel)

"There's candy in there!"

"Happy Halloween!"

Downtown Trick or Treat

Michelle and Morgan joined us for this year's festivities on Main Street. All the businesses gave out goodies and lots of kids dressed up and had fun.

Phillies Win the World Series!!!!

And we have to show our support! We all dressed in our Phillies best. :)
Emily even got to stay up to see it happen! Lucky girl. :)
"Phillies win! Phillies win!"
"Go Phillies!""Let's see another home run!"

"Bases are juiced!"

"What!! Cole Hamels married that girl from Survivor? Are you kidding me?"

Tuesday, October 28, 2008

The Circus

Since we went to the circus in September, I guess I'll post the pictures now! ;)
A sweet friend gave us free tickets and Jeff and Madison came along for the fun! It was a small circus, but they put on a good show, and it was actually the first time Gee-off and I had ever been to a circus. And a first for the kids too.
Balancing on a chair tower
Doggy slide

Camels and a pony

A light up sword for Drew

Geoff and Jeff

Carter and Brenna had to stay in the stroller the whole time and they were so good!

Emily stayed wide awake for the whole show!