Just a little behind . . .

Here are some pictures from March!

Drew lost his first tooth! Actually he lost two teeth in two days. His right front bottom tooth was the first to go and then the left the next day. I didn't get a great shot of his new teeth coming in though. His adult teeth actually started growing in behind the baby teeth before they fell out, instead of growing up under them. The dentist said it would be ok and that the tongue would eventually push the new teeth forward.

One tooth is now in the right spot, the other is a little too squished to move all the way forward. Hopefully as more baby teeth come out, there'll be enough room for all the teeth to straighten out.

The tooth fairy came and Drew was extremely pleased to get a dollar per tooth!

Hoop dreams


This is Emily's newest "thing". When she's had enough of whatever (noise, nurses, exercise) she puts her hands over her eyes very dramatically. Sooo cute!

Our little artist - Carter loves to draw with chalk on the patio. He liked drawing on our door mat too.


I'll get some April pics up soon. The weather has changed dramtically, so you won't be seeing much of the winter coats. Yay!! :)

Update on Miss Emily

Lots of good things going on for our sweet little girl who has been receiving many well wishes and prayers from all who know her. Emily's last real seizure was 68 days ago! This ketogenic diet has been a real blessing for her, and although her EEG still isn't normal, all of us are noticing positive changes in Emily. She seems to be recognizing sounds and looks toward the source of those sounds(when she's in the mood!), has been "dancing" in her crib and chair, and has vastly improved head and neck control.

Shown to the left is Emily's "meal" for one day. Pictured is her syringe of micro lipid(FAT-uggg) , and a teeny bit of Gerber carrots and beef. Aimee mixes the meat and vegetable into ice cube trays and freezes it because 1 jar of each is enough servings for 8 days, but baby food is only good for one day after opening the jars. It's way more convenient to measure it all at once and it also saves us about $6 a week!

I am hungry!

Emily also eats during the day with very precisely measured formula which consists of soy based carbohydrate free formula, apple juice, micro lipid, and water. I measure this in one pitcher each evening and then Emily receives it through her pump and tube at regular intervals during the day and through the night.

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Our latest challenge has been Emily's bout with the stomach bug, which caused her to not be able to handle the formula, which in turn gave her dangerously low blood sugar. Since she is hypoglycemic, her keto diet was formulated with additional apple juice to help maintain safe blood glucose levels. If it is too low, Aimee treats it with syringes of 8 mL apple juice until it is a safe level. Aimee tests her blood sugar multiple times daily.

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The biggest news lately was success after numerous meetings and forms to be completed to get a Medicaid waiver through the community resources for people with disabilities program for Emily to have an opportunity for some nursing care. Two weeks ago we met our first nurse and we have had several visitations as they arrange a more permanent schedule. Meanwhile, Aimee has been adjusting to having another adult in our house who cares for Emily's medical needs during the day while I am at work. Luckily, the nurses are fantastic and are making this transition as comfortable as possible.

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Additionally, the Department of Developmental Disabilities granted our request for funding to cover some adaptive equipment for Emily. Our first purchase was a swing that is made specifically for children with disabilities. The fresh air and the calming effect of swinging on the swing set should both be therapeutic for Emily, and knowing she can participate in that simple pleasure with her brothers and sister will be good for her Mom and Dad as well.

This picture speaks for itself!

Go, Emily!

Easter 2009

This year Carter and Brenna were able to take part in the Easter Egg Hunt too.

Not easy getting action shots!

Pretty Little Flowers

The girls' beautiful Easter dresses were made by Aunt Sue (pictured with Brenna above)

The newly engaged Uncle Evan and Aunt Mary :)

Being serious with Aunt Beki!



"Eyes"

trying to get a decent family photo . . .

still trying . . .


oh dear, which camera do we look at?????

Got it!

Happy Easter!!!!!!!

Happy Easter! (flashback)

Since I have been so bad at updating lately, I thought I'd better post something, so here's last year's Easter post. Enjoy. :)

Coming soon . . .

an update! :)

I'm sorry I've been MIA lately, but the sickies just really threw me for a loop! Everyone, including Emily, is feeling better now. Thank goodness.

I will have pictures to share next post too.

Keep reading! Thanks!
Aimee

The latest from Sickyville!

Emily has continued to have terrible BMs (I just hate to say the "d" word over and over again!), today is day 15!! We can not do the typical BRAT diet (bananas, rice, apples, toast) because of the restrictions of the keto diet, and there are no medicines we can give right now either.

Our options right now are to:

1. Try feeding yogurt for her oral feed. BUT, she has been so sleepy and fussy there has not been a good night to even try starting the oral feeds again. I was hoping for tonight, but it was not a good one! :(

2. Since the BMs are becoming a bit less frequent, try to wait it out a few more days.

3. Have the stool tested for c diff. - I have my test vials ready and waiting for the next specimen! This could be treated with an antibitotic if positive.

Emily also started having elevated temperatures this morning and then later this afternoon, so I took her to see the pedi. She has also been extremely fussy, crying a lot, and today was the first day I have EVER carried her into the office screaming. She was screaming, not me! ;)

Her throat and left ear looked ok, her right ear was too blocked with wax to get a good look. :( Dr. K decided to get a catheterized urine sample to test for a UTI just in case, so I have those vials ready to bring to lab too. She is teething, and has about 4 teeth pushing through right now, 3 of which are molars. Darn teeth!

She is tolerating her full feeds on her regular schedule now - YAY!!! And her blood sugars are back up to normal levels too - Good news. Phew!

And then there's Carter. He went back to see the pedi on Tues. when his temp flew up to 103 out of nowhere. His right ear was mildly infected (just as it was 2 weeks ago to the day), but Dr. N said not enough for that high of a fever. So he probably has something else viral. (Which Emily could have too I guess) He is on another antibiotic, and already feeling better. No fever since Tuesday. He has been extremely clingy and whiny since the beginning of all this sickness. He has also had a few loose bms again, but maybe due to the antibiotic. Poor buddy.

And Drew. He had been doing great since he got through the stomach bug in 2 days like me. Today we had his follow up with the ENT. He has had two sets of tubes after having 10 ear infections in 5 months at one year old. He got the first set in 2005, and another set just before the babies were born in 2007. Well, this is the first we've been back for a follow up since then.
We did know from his check-ups with the pediatrician and the one ear infection he had in the fall that his right tube was already out and his left tube was getting ready to fall out.

When we got there, they brought us over to the audiology side to my surprise. They checked his ears by Tympanogram first and found there was negative pressure on both sides - not good. She did confirm that one tube was out and one tube was sitting in wax (ok, I'm not very good at cleaning their ears, I get it!!!!) Then we went to the sound proof room for the hearing test. He repeated all of the words she said through the headphones. I did hear him ask her "what?" once. And he raised his hand when he heard beeps. When she came in she said he showed mild hearing loss in his left ear. :( He never has before so I was very surprised.

When we saw the doctor, he did say the runny nose/cold that unfortunately just started today could be the reason for the test not going so well. He suggested we bring him back in 6-8 weeks for another check without a cold. And if it's still not looking good, he'll need another set of tubes and his adenoids out too.

Brenna is holding her own right now. She has had some loose bms again like Carter, but nothing else. She also was the only one to avoid vomiting during the stomach bug fiasco! Go girl, she is one tough cookie.

Please, please let this all be over soon!!!!!!

Finally Home

We actually got discharged on Tuesday evening around 6:30. Emily had been doing great with her sugars at the hospital and had not thrown up. We got home just in time for her nightly meds and she immediately threw up! Then she threw up again about 2 hours later. :(

On Wednesday morning, her sugars were dropping again, even on the 24 hour feeding schedule. I called the hospital thinking we would have to go back, but by 2pm her sugars had come back up and no more vomiting.

Unfortunately, Nicole got sick Wednesday afternoon so she and Joe retreated back to Joe's brother's house so Sierra wouldn't get sick too. No such luck, Sierra started throwing up on the the way there and he got sick today! :( This thing is vicious! I feel terrible and I'm so sorry our visit got cut short due to this horrendous stomach bug.

We are finally starting to see less messy diapers from Carter and Brenna though. Gee-off, Drew and I have been feeling better for a few days now too.

CHOP (day 3) 6am

When I spoke to Aimee last night, Emily was tolerating her feeds at close to capacity. Her sugars were still jumpy and there seemed to be a short term solution on the horizon with the sugar water/apple juice.

Joe, Nicole, and Sierra made it yesterday to find one VERY excited Drew. They'll stay with the crew today and I'll fight my way back to work despite my bugger of a sinus infection.

The Neurologist came in to see Emily late yesterday afternoon to report the findings of the EEG. There was still sigificant hypsarhythmia, although these results were not yet compared to a previous scan to determine improvement. She comforted Aimee in the fact that Emily is doing more lately than before the diet, and that there is still more to learn.

These were not the results we were hoping for... The only thing this really tells us is there are more unanswered questions for Miss Emily.

Hopefully our girls will come home today... We surely miss them.

Update: CHOP (day 2) 8am

Aimee just gave me an update: Emily wouldn't tolerate formula feeds through the night, she kept throwing up. In order for her to get her entire feed over 24 hours she needs to eat at a rate of 45 mL/hr. She is currently handling 20 mL/hr without getting sick. The hope is to gradually increase during the day so she can eventually handle the full feed. Her blood sugar levels are still bouncing between 40-55, the goal is to maintain 50+.

Emily's room is on the neurology wing, so hopefully she can still see her Doctor today for her scheduled EEG and appointment. One of the fabulous nurses in charge of the ketogenic diet already stopped by to see her.

Update: Back to CHOP

Ok...

I'm back on my feet again, Aimee is back on her feet, Drew is back into the swing of things, and the crankiness continues among the little ones. Unfortunately, Emily has not been able to handle formula since Friday night.

We've had her on continuous water, to avoid dehydration. Aimee has been checking her blood sugar regularly and adding 8.5 mL of apple juice when needed to maintain Emily's blood sugar at an acceptable level until she could tolerate her feeds. This was basically the same thing we did last time she was refluxing and/or sick with stomach issues.

Unfortunately, the illness got the best of her and the on call doctor wanted her brought in to the ER this morning. Her blood sugar was at 28. They were admitted to 7 West this afternoon and will not be sent home until she can handle her feeds. As Aimee posted yesterday, Her family came down for a visit and is supposed to stay with us this week, so this is not a good week for her to be stuck in the hospital.

Meanwhile, the cranky Duo are on a nap strike since Mommy left the house. Hopefully they'll sleep well tonight.