Emma's Grace

There are 2 firsts, to be exact.

1. Emma woke up with her first cold yesterday morning. She’s very stuffy but is still managing to eat well. She seems to find the sneezing amusing. I, however, find them yucky and wet. She’s been pretty happy despite being sick.

2. We have our first tooth. The night before Easter we thought we felt some definite bumps in her little mouth. But the next morning they were gone. I keep checking this week but have found nothing…until this morning. There is a sharp little white stub poking thru her gums. For those of you who don’t breastfeed, let me tell you, this is a nursing mom’s worst nightmare. Matthew was very good and never really bit me. We’ll see if Emma can manage to not harm me as well.

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The time sure flies. Over the weekend, Emma had her 10 month birthday. What happened?!?!?! She’s getting so big that I can’t even believe it.

Emma’s been seizure free for the last two weeks. We’ve increased her Topamax again with the hopes to wean her off the Vigabatrin. Which will be nice if we can manage that. Not only is that one less medication, putting her down to just one medication, but that means I don’t have to lie to get across the border and then lie to get back. It’s time to get Emma’s refil of Vigabatrin and that means a road trip for me. If you don’t hear from me after the weekend, you’ll know what happened.

Emma’s been doing a beautiful job of her PT and OT. She gets stronger every day. We are still working on grabbing toys and holding them. She doesn’t really hold onto the toys very well, however, she grabs onto my finger, hair, and clothes and I can’t get her to let go. As soon as you lay her on the floor, she rolls over. There is barely any hesitation. She doesn’t always enjoy the after effect, and sometimes even manages to roll back. I’ve even been finding her sleeping on her tummy.

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I decided to move the blog to a different location.

Please go here now.  Also, you will have to sign up for the RSS feed again if you were using that.  It is here.

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Yesterday, Emma seized all day. We tried the Klonopin but it didn’t seem to work. We put Emma to bed last night expecting to call the neuro this morning. Emma was still sleeping at 9am so I woke her up. At 10:30am I called the neuro, but instead of telling them that Emma was still seizing, it was to tell them that the seizures seemed to have stopped. So far for the day, we have been seizure free. Emma’s been a little sleepy, but I expect that to happen after her poor brain goes thru all of that for almost 2.5 days. She’s even back to talking like she used to and even a little bit of rolling over. Let’s all hope that it continues. On another happy note, thank you all who voted for Colgate to give Children’s Hospital of Michigan an extra fun center. The winner should be announced on the website today. However, if you look at the current vote tally, Detroit is in the lead. Thanks to all of you, there will be some happy kids at CHM who really deserve the extra Fun Center!

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…and some days aren’t.

The seizures have started again. We went 2 days being seizure free. I guess her levels of Topamax still aren’t where they need to be. I went to get the Klonopin but found that it’s not a common drug to keep in stock at the dosage that was prescribed. They had to order it. Dr. McCormick also wrote it is DAW (dispense as written) and used the brand name and not the generic drug. I’m not sure if there’s a difference, but the pharmacy is going to order both until we can find out Monday.

I know that watching Emma seize is hard for Jon. You can see by the look on his face how helpless he feels.

I feel the same way. There are so many days that are great. Emma gets her meds and is happy, talkative, and smiley. And then there are these days when the seizures come back.

It’s hard to watch Emma seize. The faces she makes. The movements she does over and over again. We try to do the best for our kids. Breastfeed because it’s so good for them. Make our own baby food. Try to not over medicate. Keep them safe. But I can’t stop the look of pain on her face, even though seizures aren’t supposed to be painful. I can’t stop the shivering and the repetitive motions.

I can’t fix this.

I just can’t.

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