Shakey Baby Girl again

Emma had a seizure today around 5. I had to give her diastat, which is the break through medicine they gave us, its given rectally, not fun to give it to her. It stopped it within 2 mins. She slept for about 2 hours and woke up doing just fine now, hanging out watching tv with her sister.

Here is how it went down so to speak: She had a small seizure it stopped by itself but then she dropped her oxygen sats to about 85, which is low but not super life threatening low. I bagged her (manual breathed for her) to bring them back up, for about 30 seconds and then she was fine. No oxygen, that would have been my next step if bagging did not work. I did a quick trach change, just in case it was plugged or something, it was a bit gunky but nothing pluggish. Then she had a seizure again, and I didn't wait to see if it stopped this time. I got her medicine and while I changed her diaper prior to giving it to her (She had a messy diaper) she dropped her sats to 89. Bagged about 5 squeezes of the bag and she came back up. Gave her the medicine and she went to sleep she was Not breathing over the vent at all, but that is ok, the medicine knocks her out and that is expected.

We have never had to use this medicine so I called Donna. Daniel's mommy. Daniel had to have it used a lot. She told me that Emma would be asleep for several hours and really limp and loose. Which she was.

So now we have to keep an eye on her and make sure she doesn't have any more seizures. I think if she has one more like this I will ask for something besides the zonegran. Right now she has had 2 seizures this year. That isn't really that bad in the grand scheme of things but if they continue I will worry.

Sorry I haven't updated in so long. Wonder how many blog posts I have started out with that sentence? HA HA. There just hasn't been much to talk about. Nothing much going on around here lately. Emma is doing awesome, and is enjoying the summer time. I can't believe summer is almost over already.

I think I forgot to blog on going to see the neurologist about a month ago. I didn't see it in my posts, so hopefully this isn't a repeat. If it is, sorry. We got a refill on the medicine she takes to help control seizures, which is Zonegran. We also got some distat which is a rectal medication that will help stop a long seizure if she were to have one, like the one she had a few months back and ended up in the ER. They weighted Emma, she is 31 lbs, so she has only put on one pound in the last year, which isn't a bad thing really, they still don't want her putting on too much weight at once since that makes it harder for her to breath. They said she looked great and we go back in 6 months.

Here are some of the newest pics of our family. Yes, my hair is brown currently, but coming out so I will be going blonde again soon. These were taken on July 15, which was mine and Darren's 14th wedding anniversary. The family one isn't great but Derek did not want his picture made and its hard to get everyone to sit still long enough.

Not much more to share about right now, but I promise to start blogging more soon. Bless you friends!

Today is a very special anniversary of sorts. One I would rather not have to commemorate but its also one I embrace in celebrating, if that makes any sense at all. Today marks the 4th anniversary of Emma coming home on her ventilator.

It is so hard to believe its been 4 years. Sometimes it feels like just yesterday, but then I sit and think of all the things that have happened since then and it feels like a little lifetime. In fact, thanks to that vent we have been able to have a little lifetime. Emma's lifetime!

That vent has given us something very special. Time with Emma. I hate to think where we would be without it. It has not worked alone, God has been there every single second, helping it right along. We have been given 4 Christmas times we might not have had, 4 birthdays, a few trips to the dinosaur museum, trips to the park, and the chance to take Emma to church and the opportunity to meet some of the most wonderful and dear people in our lives. Its given me 1,461 more nights to tuck her in and say her prayers. Its given me around 9,000 more diapers to change and 9,000 more meals to start on her feeding pump, which I despite sounding like a pain in the rear end I am glad to have been able to do.

What looks like a box with some tubes and blinking lights to most people, looks like a lifesaver to me. It may sound corny but its like looking at a piece of Heaven, an extension of God himself almost, breathing life into my little girl.

If I have learned anything from this experience, its that every day we have with her is a gift. I will never take one day for granted. I cherish every moment we have with her. It makes me apply that same principle to my other children too. You have no idea how precious life can be until its almost lost.

I think back to the dreadful times that Emma's breathing and heart stopped and how we had to do CPR. I remember crying and screaming and saying to God that I wasn't ready for him to take her. With this ventilator I know other than an illness, that kind of apnea will not take her from us. Its such a piece of mind, that little blinking box with tubes coming from it.

We have never lost faith, during all our darkest hours, and we never will. It is truly by his grace, not just the doctors and machines that Emma is here. So today I thank God for hearing my prayers, and answering my prayers. I know looking at Emma, you would think she was really sick and needed a miracle. But we have gotten our miracle, God has heard us. He has given us her life, it might not seem like a wonderful life from someone on the outside looking it, being hooked up to machines and not being able to walk or talk, but it is her life and that makes it the most precious thing ever.


I sought the Lord, and he answered me, and delivered me from all my fears. (Psalm 34:4) I am not longer afraid of nights like the CPR nights, he has taken away my fears, he has answered me, he has given Emma a chance for happiness, he has given her life, first at birth, then twice the nights she left us and needed CPR, and again July 5, 2005 when she came home to us on her ventilator.

The fireworks were postponed last night here, due to rain. But I think in a way maybe they were meant to be done today, the real day that my family, and that Emma gained her independence!