Fire Drill!

Monday morning, my heart started pumping a little faster than normal. I have my own "Google" page with all the different news sources I want on it (RSS feeds for the Internet know it all.) I keep our my local newspaper on it and it gives me "breaking news alerts." Imagine my surprise when I see Jenelle's school in a headline that reads "Fire at ___ Elementary - Students Evacuated!"

Turns out, it wasn't a real fire but rather a faulty air conditioning unit that filled a room with smoke (electrical problems.) The room wasn't even in Jenelle's building. Luckily, the special education classes do not start until 9:15 and the fire was called in shortly after 8:30. So Jenelle and the rest of her classmates (almost all in wheelchairs) were kept on the bus that had just arrived at the school. Apparently, it was quite a mess. More than 30 school buses (short buses) lined up in the parking lot and out into the residential street, and 4 huge fire trucks! Eventually she made it into her classroom once they were given the all clear.

Can you imagine trying to evacuate children in wheelchairs? Oh my! I spoke to her teacher after reading the news, and she said it was exciting and quite a mess as the principal was not on site that day. When I picked Jenelle up from school that day, I asked her if anything exciting happened at school. She simply gave me her best "raspberry." And I think that was the best response for the situation after the fact. So glad it wasn't worse.

Article about Special Needs Siblings

My friend Vicki has written a new article that really touched my heart when I first read it yesterday. The timing couldn't have been more perfect. Jack has gone through so much since Jenelle was born - I often need to remind myself about how amazing he is, and how in the end, he will be OK.


Please click here to read the article.

Enjoy! And thank you Vicki, for putting down these words and emotions so perfectly!

The bacteria was identified!

Sorry for the quick post on Sunday - I was trying to get out the door to watch our Angels lose to Boston! ;)

When I spoke to the lab at the ER and the bacteria was identified. Just before leaving for the game, the ER doctor called after reviewing the results. He felt that Jenelle would be fine with the IV antibiotics she received on Saturday. Also, the second blood culture was clear after 24 hours, which means she could be over the infection (or that it was a contaminant.) We are still waiting for final results (as cultures take a full 72 hours) but it looks like we have safely avoided a hospital admission (knock on wood!)

Jenelle seemed a little better on Sunday, but still lethargic. All of this is just another reminder at how medically fragile she can be. I asked the ER doctor how she could have possibly obtained a blood infection, and it seems the bacteria identified was a "staph type bacteria from the skin" which could have come from an untreated cut or sore. Also, a typical cold virus can always cross into the blood system so that was very likely as well.

Thank you for keeping us in your thoughts and prayers! I'll keep you posted if anything changes!

Too many trips to the ER

Thursday night we had a trip to the ER with Jenelle. While sleeping, I over-heard her choking - a common sound she makes when trying to vomit. I went to her to find her drooling and very lethargic. I then realized that earlier that evening, she had been breathing heavy and panting - all of which are signs of metabolic acidosis (where the blood is acidotic - too much CO in the blood.) I spoke to the metabolic doctor on call, and he sent us to the ER for labs, and said to prepare for possible admission. Jenelle had a fever the night before, so there was a possibility she could be sick.

At the ER, they ran many tests including a chest x-ray, blood and urine cultures. All the tests returned normal and her CO level was 27, which is absolutely perfect. The ER doctor assumed she had a virus, but said we did the right thing with the symptoms she presented. If she had been acidotic, she would have been admitted for treatment. We made it home at 3:00 a.m.

Saturday morning after Jack's soccer game, we had a message on our phone from the ER. Turns out Jenelle's blood culture returned positive for a bacterial infection. I took Jenelle back to the ER so they could re-do the blood culture to make sure the first wasn't contaminated, and for IV antibiotics just in case. Jenelle has been acting lethargic and of course an increase in seizures, so we assume the bacterial blood infection might be right. I just spoke to the lab at the ER and the bacteria was identified, but they are waiting to find out if it can be treated with oral antibiotics, or if we have to return. Good news though is that the second test is clear, which means oral antibiotics may be OK.

We are trying our best to keep her home - please keep us in your prayers that this can happen. Thanks and I'll keep you posted!

Jenelle - Devastated by the Angels loss!

OK Angels - You can't do this to my little girl! She has high hopes for another World Series Win to honor her 5th birthday coming soon!

Don't disappoint this sweetheart!



That said, I'm not too worried. When we won in 2002, we lost the first game of each series. It's kind of our thing. However, Friday is a must win. I'm just saying...

Oh, and Jenelle cried like this all through the 9th inning. Then I took her temperature and realized she was running 102.9! Yikes! She fell asleep at 7:00 p.m. and hasn't moved an inch! Poor thing!

Jenelle is ready for the PLAYOFFS!

Go Angels!

Bad news and Good news!

Well, this week has been a bad one for Jenelle as far as seizures are concerned. Earlier in the week, Jenelle had a bad cluster of seizures ending in our having to use Diastat (her emergency seizure medication.) She had a cluster of seizures that went on for almost 2 hours, but the Diastat did its job! UCLA thinks teething might be the culprit so we are going to continue to monitor these seizures. This is why we have Diastat, and hopefully we can stay out of the ER!

However, onto the good news … Jenelle has made HUGE strides in eating this week! As of last weekend, Jenelle has been taking 3 jars of baby food by mouth each day, and is drinking her formula from a special straw out of the can! Her school informs me that they haven't used her g-tube for feedings at all, and at home, we've only used it for medications or to finish a feeding if she seems too tired. This progress came out of nowhere, and is simply amazing. I honestly think I had given up on any chance of Jenelle ever eating by mouth. She also likes special cheetos, bread and croutons. We think her desire to start chewing was instigated by her teething, so with that in mind, we'll deal with the seizures!

That is all for now. Thanks for your continued prayers - I'll keep you posted!