Whew! What a day!

Today was a busy and crazy day with tons of twists and turns! The day started with physical therapy with Noelle. It went really well until Noelle "zoned out" for about 45 seconds. I was in the kitchen and heard the therapist saying "Noelle?! Noelle?! Can you hear me Noelle?" Then she started to clap her hands. Of course, I went in there to see what was going on. Noelle was not doing anything she doesn't normally do. When Noelle had her hearing test, I said she had selective hearing and I thought this was a part of it. Little did I know, the therapist thinks Noelle could be having a seizure. She was not sure, obviously, she's not a doctor. But she said that I should call her docs and get it checked out. I told her I would check with the docs to see what they want to do.

In the meantime, I had to make lunch quickly and get out the door to Noelle's Cardiology appointment. Noelle has been having low heart rates while sleeping lately. The doctor said he was not too overly concerned, but put a monitor on her for 24 hours to see the patterns. If she doesn't have an episode tonight, then we have to go in the office tomorrow and exchange it for a longer battery. He basically wants her to wear the holter until she has an episode. This should be fun...

We came home and I had an e-mail from Andon's doctor stating that most of his blood work was normal, but his white blood counts were low. She said they were not too low to cause any panic right now, but something to keep an eye on. We have to go back at the end of the week and he'll probably have to have more blood drawn. Also, Andon has always had a bald spot on the top of his head. She is concerned about the bald spot and referred him to a dermatologist. If it is what she thinks, he needs to get the spot removed because the cells can become cancerous quickly if not taken care of. She reassured me that the white blood count and the bald spot were not likely related.

Once I got done with those concerns, I had to move on to the seizure issues. I contacted the pediatrician and (duh) they told me to call her neurologist. The neurologist nurse called me back right away. She wanted to schedule an EEG soon to get a feel for if Noelle has abnormal results that would indicate seizures. Of course, we set it up for in the office and were going to have it done at the end of the week. UNTIL...she said...."and she's not on oxygen or anything right?" uhhhh..... yeah...she is!? Well, that changed everything. Now, because of her complex history and breathing issues, she has to have the EEG done at the hospital. If something were to go wrong with the sedation, they want to make sure backup is nearby. The nurse was not sure if the outpatient lab would be able to do it. By then, it was about 4:55pm. By the time I called the hospital, they were closed. The nurse told me that they might have to admit her to get the test done. If they did have to do that, they would go ahead and do the more efficient EEG and MRI. Just the thought of going back there for another night makes me want to scream. But, I'll do what I have to do for my kids!

Whew! That was my day! Of course, the poor kids nap schedules were gone and they were cranky this evening. Thank goodness for an early bedtime! When it rains it pours...and sometimes actually hails! First thing in the morning, I'll be scheduling the EEG (hopefully outpatient)!! I feel bad because I have noticed Noelle "fuzz out" for periods of time before and never even knew that could be a seizure. Oh well...live and learn....

Time for bed!! Keep the prayers coming....

xoxo,

Stacie :)