Emma's Grace

Andi and Emma are home now.  They were discharged from the hospital on Tuesday afternoon.  Sorry for the delay in the update.  We have been enjoying a nice quiet day at home, especially after Santa made a special trip to our house last night.  We spent the morning opening presents, playing with the presents, and watching Christmas shows.

We have an appointment with our neurologist on Friday.  We are also starting Emma on a new drug tomorrow, as well as wean her off of the phenobarbital.

Hopefully Andi can manage an update this weekend.  She’s pretty slow on that stuff.

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Last week, Emma developed a fever pretty much out of nowhere. It wasn’t too high, but high enough (100.5F or so). Towards the end of the week, however, she also began having more seizures. Fevers lower the threshold for seizures, so we weren’t sure if the issue was medication level, or the fever. By Friday, we knew we needed to do something. After speaking with the neurologist, Andi took her to the pediatrician to see about the fever. The pediatrician didn’t find anything definite, but suspected an ear infection. She prescribed an antibiotic, along with continued use of Motrin or Advil to lower the fever.

By early evening, though, she was still seizing, and they were too frequent and long to ignore (lasting roughly 30 seconds, occurring about every 2 minutes). So Andi got her stuff together, and took Emma to Children’s Hospital. They took her in right away. Since then, they have run many tests (blood work, urinalysis, spinal tap, EEG), with nothing conclusive yet. For some of the tests, though, we are still waiting for the cultures to be done.

Since she has been at the hospital, Emma has had several more seizures. They have put her on a new medication (Topamax), but she even had some seizures after that. Because of those extra seizures, they have kept her in the hospital for longer than the previous stays, although we are hopeful she’ll be able to come home on Monday.

Meanwhile, Matthew and I have spent a lot of time watching “Matthew Shows” and playing at home. We did make it to the hospital this evening to visit. We watched a few cartoons (Emma’s room has a TV), and Matthew, Andi, and I went to Wendy’s for dinner (the Wendy’s is in a connected hospital, so it is easy to get to).

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We’ve added 2 more things to Emma’s menu….bananas & sweet potatoes.

She has seemed to enjoy both. We are still working on the actual eating part, but we’re getting there. Here are some pictures.

rice cereal

rice cereal 2

bananas

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…into baby food, that is.

On Thanksgiving, Emma turned 6 months old. It was time for her to try food. I’ve kinda been dreading this, as I did with Matthew. My baby is getting bigger and I would love it if they would stay tiny forever. However, I know that’s not the case.

Last weekend, we started with rice cereal. We’ve slowly been working on this a little every day. She still pushes it out with her tongue reflex, but it’s getting better. She seems to enjoy the cereal. In the next couple of days, we’ll be trying bananas. As we try things, I’ll post what’s on our menu and how she likes it. I’m sure some photos will also be posted.

As I did with Matthew, I’ll be making my own baby food. It sounds like a giant task, but it’s really not that bad. I used this book last time around, Super Baby Food. While I didn’t follow the book word for word, nor use her recipe for the homemade cereal, I did find it useful on how to prepare some things and when to introduce which fruit/veggie. The book steers clear of meat and instead uses nuts and soy products to give protein. I tried to give Matthew tofu, but it was more work thank I really wanted to do. Overall, I found the book a good guide and making my own baby food an easy and cheap way to feed Matthew. He ate food from less than 10 jars of baby food. When he was 10 months old, we went on a cross-country trip in an RV. I still provided him with homemade baby food, but used a couple of jars when it was inconvenient to defrost a food cube. That trip was the last that he ate baby food. We introduced him to regular food and he refused to eat the pureed food any more.

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Emma started seizing again this morning. Not as much as before. From 8am till 9:15am, I noted 6-8 seizures. I called Dr. McCormick and we increased her Keppra dosage. Another 1ml right away and increase her regular dose from 1ml to 1.5ml, both morning and night.

I haven’t noticed any more seizures since this morning.

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Today was our 6-month check-up for Emma. She’s such a big, healthy girl…as long as you forget about the seizures.

Emma weighs 18 pounds 11 ounces. She is 28 inches long.

Dr. Sabb was very pleased with Emma’s progress. Emma has some very good things that she does even though she is behind because of the seizures. Her muscles aren’t tight, as well as being very alert and active.

She received her 3 immunization shots, as well as a flu shot. She’s such a big, strong girl. She barely cried and when she did, it was only because we were holding her down. As soon as we let go, she stopped. Matthew and I also received flu shots. We do have to go back in a month to get the kids another flu shot, since they only got a half dose.

Over all, it was a good appointment.

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We had a relatively uneventful Neuro appointment today. Dr. McCormick was happy with Emma’s progress. Other than that, there wasn’t much to say.

We scheduled another EEG in late January, as well as our next neuro appointment.

To help us out, they gave us some samples of the Keppra that will last for a while.

And we were given the go-ahead to give Emma her 4-month immunizations. We were just instructed to keep her medicated with motrin for a couple of days after giving them to her to keep any fever at bay. High fevers can cause febrile seizures.

We were also given orders to take Emma in for some more lab work.

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