Monday, May 21, 2007

Day 19: Murphy Who?

The saga continues.....

Boo continued to jabber for a good long while last night. I put her to bed around 8, hoping that she would crash after such a strenuous day. Usually, she crashes after a normal day. I was looking forward to the peace and quiet.

It wasn't to be. Poor Boo couldn't stop talking even though she clearly wanted to. She called out to me endlessly. I tried to ignore her at first, help her realize that it was bedtime, the time to SLEEP. But her voice quickly became worried and hectic. And still she was mostly saying "hi!"

So I went to her room to check on her, maybe calm her down some. She practically starts to cry (for those who don't know, Michaela doesn't cry unless she's hurt. Her emotions are pretty mixed up, and she almost NEVER cries due to sadness, fear, or remorse.) and her whole face is contorted in an awful sadness. It totally breaks my heart.

"Mom!" she cries. "Mom! Be with me!"

So I try to sooth her and calm her down and help her stop the cycle. She becomes more comfortable, more calm, but simply cannot stop. By now, she's even whispering random conglomerations of "Mom", "Hi", and "Be with me."

Something similar to this had happened to her sometime last year. I had called Chief's office hoping to find out what to do. I didn't get Chief, but a foreign resident who couldn't quite figure out what the problem was. Once he did (after much pain on my part), he told me to give her Benedryl. Benedryl?!?! I about croaked. She didn't have hives! What in the world???? Benedryl?

But it worked.

So last night, I gave her Benedryl.

And she finally conked out.


This morning, I found her sitting on the floor in her room when I went to get her up for school. She was seemingly having a hard time sitting up straight. She would start to slump over, but catch herself before she fell all the way. I sat on the floor and looked at her. She was not talking. She hardly noticed me. Her hands and arms were contracting with little tremors. She was drooling.

I picked her up, put her back to bed, and kissed her on the cheek.

And I called the bus to tell them she wasn't going to school.


She's had a pretty rough day overall. She couldn't eat, so I hooked her up to the feeding pump. Funny thing was, I gave her some crayons, hoping she would color so she wouldn't be so bored in her wheelchair.

She ate the crayon. Purple with glitter. Gotta love it.

Then, when I couldn't get her to stay in the chair anymore (because she was growing very agitated, and you don't want a non-verbal, feeding tube bound child to get agitated. It can get loud and messy....), I let her walk around. But her walking was funny. It was like she was falling backwards constantly. Either that or her own private hurricane was pushing her back.

After a while, she was grunting under the strain of walking like that. She couldn't even sit without falling backwards. I would lay her down to give her muscles a break, but she didn't want to "sleep", so she popped right back up and resumed her awkward walk.

In the middle of this, I notice her hands are turning mottled and reddish-purple. Like there are rubber bands on her wrists or something. It wasn't extreme or anything, but not quite common either. I thought maybe her hands were cold. They were warm to hot. It mainly occured when she was standing up, and would dissipate when she sat down.

And the last couple of days, I've noticed that her eyes are bloodshot. Not pink-eye, mind you. Just dotted or splotchy with broken blood vessels. I assumed it was from the extra seizures I figured she was having in her sleep. Today, her left eye had a perfect dot of blood, while the right was blotted. Weird.

So, in light of all these strange symptoms, I called Chief. Just to be on the safe side. As much as I've seen her bad days, this was the most unusual bad day she's ever had.

Chief's wonderful nurse Barbara tells me to go get some labs done, and see if she can be seen by our Pediatrician. Maybe Chief's thinking what I'm thinking? Inner ear or something like that? I make the appointment. It's for tomorrow at 10.


Would you believe me if I told you that approximately 2 hours after I make the appointment, Michaela starts acting normal again?

Talking. Eating. Walking normal (for her).

Yeah, she's still a little slow, and she can't do everything she normally would, but NOTHING like she was the majority of the day. Just nothing. In fact, she perked up significantly when her Daddy walked in the door. She talked his ear off with "Hi's" and "I love you's" and "You're home's", all the while, hugging his guts out and planting big slobbery wet kisses.

She continued to improve through the evening. She was determined to hug both of us endlessly.

She played like she normally would.

She ate her dinner at the table with the rest of us.

She went to bed, and right to sleep. Just like she usually does.


I think Murphy's Law came into affect a little today. You know, the one that says, "If your child has a problem, they will ineveitably "snap out of it" right after you call the doctor, leaving you looking like a hypochondriac parent."

Well, chalk one up for "Murphy, " but I'm still keeping that appointment tomorrow.

I want to get to the bottom of this.

Stay tuned.


Dana said...

After talking to you today, I'm really glad to read this post. We both also know that there is a greater law than "Murphy". The "getting better right after you call the doc thing" always seems to work in my house, too.

Whatever the case may be, I'm really happy to hear that Michaela is talking and eating now. I love those slobbery kisses!!

Let me hear after the appointment. We are all worried about her.

Poppi's Window... said...

I feel for ya'll, and hope it will get better.
I took care of the "Tag".

JeniBeans said...

Hey, you know that crayon will color her stool.

(it's a private perhaps you could get my mother-in-law to decipher for you one day as it's actually quite funny)

Glitter? oh my.

Awesome Mom said...

I am glad that she is feeling better.

Murphy is one reason that I hate making doctor's appointments. I hate with a passion feeling like a clueless parent. But you also do not want to wait too long if something is really bad. Luckily my Ped is very good about getting you same day appointments.

Alabamabrands said...

When purple glittery teeth are involved, you grab the camera.

Sorry about the rough days you're having. I'll be praying.
Let me take her for you one day after VBS is through.(I've got company this week)

jes said...

i'm sorry you are going through all this kelly. i wish i could hold your hand and decipher what is going on. i know it would just break my heart if i was there for i love michaela so much! i'll keep you guys in prayer and believe for the best.