Checking in Tuesday - #1 and #2 :)

It's been a busy day! This has been my first chance to post.

They woke us up at 6:20 to put in Emily's blood drawing IV. They checked and double checked her arms and legs, and put heat packs on her arms and legs. They decided on her right ankle, and got it on the first try!!!!! :) It still took about 25 minutes, but it's working well for blood draws so far, and I have my fingers crossed it will last the whole time we're here.

I measured out her first feeding at 8am and ran that through the pump. She is on a bit of a different schedule for feedings for now too. But she tolerated the new formula well! It is a carbohydrate free formula, called RCF, mixed with Microlipid and water. The microlipid is emulsified oil that will mix with other solutions and contains the fats that are the key to this diet. The RCF and Microlipid are mixed with water, and that is the formula.

At 10 o'clock we had our first class, side effects of the diet. We officially met the 3 other families, all of whom also have girls; one 4, one 3, and one 14 months. We were informed that constipation, vomiting/nausea, and sleepiness (like after Thanksgiving dinner) are the most common side effects. Emily is already constipated on a regular basis, so we really have to keep on top of that. Her Colace has been switched to Miralax because it comes in powder form. In fact, all of the medicines that come in liquid form had to be changed to tablets or powder because the liquid form contains sugar, which she can't have. So now there will be many more pills to crush at med time. :(

We were given a chart to record daily seizure activity, urine test results twice daily, blood sugar daily, weight once a week, and a few other things.

After class, I ran back to get Emily's next feeding weighed and started. But before I could do that, I had to take Emily down to get a bone age xray. It's a requirement of the diet, but I'm not quite sure why. When we got back, I got the feeding started and ran down to get lunch. I had just enough time to shovel it down and then it was time for the next class!

Class #2 was with the dietician and we had to bring our calculators! ooooooooooh! ;) We had to practice calculating meals, using carb, protein, and fat exchanges. Right now, Emily is only eating a tiny bit of food by mouth, but if she progresses and starts eating more, I will have to know how to do this. Not too complicated, except when the protein required adding or subtracting from the fat exchange values. Luckily we have a math teacher in the house! *wink*

After that class it was almost four o'clock. We had a little break (read "nap") and then it was time for dinner. I brought Em's feeding chair from home and she had her oral feeding and another bolus feed on the pump. I got some dinner too and now I'm settling in for some good TV tonight!

(Hey honey, if you read this in time, can you record Biggest Loser???) :)

Good night!

Checking in - Monday #2

Not much to add to the previous post.

I ate dinner.

I took Emily for a stroll in hallway, since this time, for the first time during a hospital stay, she doesn't have to be hooked up to the monitors! :)

In the hallway, I met 2 of the other Moms whom I had previously met at the Keto class in November. It was nice to see familiar faces.

We realized it will be a very early start.
They will be doing the IV before 6 am (since they did not put it in tonight), and getting the first blood draw at 6am.
We need to be ready to go by 7ish, so we can prepare for the first feeding at 8am.
Our first class with the nurse is at 10am.

I'll update again, sometime after noon tomorrow since the morning will be so busy.
Good night!

Checking in - Monday #1

We're all checked in! Emily is now snoozing away in the spankin' new hospital crib. The rails go all the way up like a little jail cell. :) We don't have to worry about that since she doesn't try to climb out.

So far, I've gone over Emily's feeding schedule and medications with 2 nurses, 2 doctors, and the keto nurse and dietician - each separately. I've taken a second trip to the car to bring up the rest of our bags, and also stopped to have lunch.

She did not get an IV yet, but that is possibly coming tonight. That is the only thing really happening tonight.

She will continue on her regular feeding schedule, and regular formula until 5 am. We will start the keto "goodness" at 8am tomorrow. Her feeding schedule with amounts and times is posted for the next 2 days. We will be measuring all of her new formula, water, and baby food to the gram. Everything is very exact.

I'll check in again before bedtime. :)

Merry Christmas!

Yes, I realize it's been almost 2 weeks now since Santa came!

Here are some pictures of our wonderful day.

Emily in her peppermint hat!

We decided to let the kids open their gifts from Meme and Pepe early since we knew there would be an overload on Christmas day!

The stockings were hung on the staircase with care . . . (ummmm, no fireplace!)

It's a snowball maker

Yay for Christmas!

- A rare picture of all three babies together -

SERIOUSLY?!?

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?

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!!!

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

Cars!
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. :)

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!

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!

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!