The never ending case of strep & a singing snail.

Today was BabyGirl's 6th day on Omnicef for her strep throat. She's still running a fever. I called the NP this morning & she phoned in a new script for us. BabyGirl is now on Zithromax & I'm hoping it kicks this mess by tomorrow night.

The OT was at school Friday to see BabyGirl. BabyGirl was home sick. The OT will be back this Friday. We only have one day left to get rid of this fever. I thought we were in the clear today, but at bed time the poor kid was back at 101. I decided to forgo her night time dose of Motrin in the hopes that the fever will either kill the strep or break in the night. The school has sent home notices asking parents to keep kids home until they've been fever free for 24 hours. So she'll be home again tomorrow making it the 5th day in a row.

I popped in to ask about her home work on Monday. Mrs.G said there wasn't any from Friday or Monday. Friday is their test day & they spent last week in Acheivement testing (she also missed Tuesday of last week, so that's 2 days of Acheivement tests to make up for). Monday was the 100th day of school, so it was spent doing *special* things. Today I picked up the work from yesterday & today...then we spent 4 hours doing her make-up work. 4 hours! She's in first grade! But then I guess doing what it normally takes 2 full days to do in 4 hours isn't bad.

I'm really getting antsy about her seeing the OT. It's only an informal evaluation and that makes me a tad irritated too. I want to get the ball rolling. I want to jump into this thing head first. I want answers & treatments...and I want it all now.

When I was a little girl we had a record with a song on it sung by a snail:
Have patience,
Have patience,
Don't be in such a hurry.
When you get impatient,
You'll only start to worry.
Remeber, remember that God is patient too,
And think of all the times when others have to wait on you.

I feel like I'm singing it at double the speed it was written for. I need to settle down & do like the song says.

Sick & Tired

It's a sad state of affairs when you're relieved that your child doesn't feel great. This is the first time in 2 weeks we haven't had some kind of bed time drama. While I do love that I'm getting to spend some much needed time with BabyGirl in the evening, it is a tad difficult sometimes.

Post bedtime is my chance to decompress. I do the last of my chores, shower, pick up the house, read, eat, watch something other than Spongebob, talk to Art without interruption, & enjoy the peace. Most nights I also have to wrangle B.B. back into bed and feed & settle Bitsy in for the evening. When BabyGirl gets dramatic & I have to lay with her, it can make the rest of that next to impossible.

Last night was a night when I needed that down time. Badly. Instead I had a fight with BabyGirl, a fight with B.B., no shower, and a crying Bitsy to take care of. It was not pleasant. I wasn't feeling well (still not feeling great), and had no patience to spare.

Today, #1 Son came home from school & said BabyGirl didn't want to play at recess because she was "sick." When she came home I asked her about it. She said she just didn't feel very good. By bedtime she was dragging a bit...it was bad enough that she not only put on her night gown and went to bed at 7:30 without a fight, but she wanted her blanket on. This is the girl who never wants to wear clothes of any kind & flat refuses to cover up with anything heavier than a sheet no matter how cold it is (19 at the moment).

Guess I should take a cue from her & hit the sack. I just hope she feels better tomorrow. She's already missed one day this week due to a bad cold...and I think tomorrow is when the OT is going to be at her school.

Get behind me, Google...Updated

Grace, I took your advice & stayed away from the Internet...at least as far as SPD goes. I did read blogs, but did no research & did not once Google anything about sensory issues. It helped a great deal.

I have come to a conclusion. I need to open my mind up to other possibilities. I need to let go of my death grip on SPD. That may very well be the problem. I still think it is the problem. But I need to accept the fact that it may not be the only problem. There may be an underlying cause. If I don't come to terms with this now, I could be in for a very hard time later on.

I called the Special Ed coordinator yesterday at the suggestion of BabyGirl's principal. I had to leave a voice mail & haven't heard back from her yet. If she doesn't call back by this afternoon, I'll try again. I also haven't heard back from Doc's office about Riley's. That's two calls to make.

After that, I promise to either sew something or read a nice piece of fiction having nothing at all to do with child development.

*****

Updated at 3:24 pm- I called the Special Ed Coordinator at the school. She was in meetings all day yesterday & couldn't get back to me. She is sending the OT to do an informal evaluation of BabyGirl & then they'll get ahold of me. I explained a little to her about the situation because I'm not sure how much BabyGirl feels comfortable telling people right now.

After that, Doc's office called me. They talked to Riley's about us seeing a doctor in Evansville (which is an hour & a half from us) as opposed to driving the three hours to Indianapolis. Riley's said there was no sense in BabyGirl seeing a doctor until she'd been tested. They want her to see the school's OT. After that they'll determine if more testing is needed & possibly send us to Easter Seals. I'm assuming this means Riley's wants to explore SPD before they start testing for medical problems.

And just so you know, I've been reading Lady Susan by Jane Austen all day. If you click on the link, you can read along. Pretty nifty.

When a step forward feels like a step back.

This blog is mainly for me. I know, I know, I invited you all along for the ride, but the real reason I'm here is to organize my racing thoughts. I need a place to center all the chaos swarming around me. I need that badly.

The doctor's appointment did not go as planned. I should be clear & tell you exactly how I saw it all going in my mind. It's actually very ridiculous, but I have a penchant for the melodramatic. Have you ever seen A Christmas Story? You know the scene where Ralphie writes the essay about the Red Ryder B.B. gun for school? When he turns it in he has a delusion that the teacher weeps over the beauty of it all & his classmates lift him up on their shoulders in celebration. Yeah, I'm a little like that.

My thoughts didn't run quite that high, but it was pretty bad. I saw myself eloquently explaining all BabyGirl's issues while Doc sat in rapt attention and the light bulb coming on over his head when I uttered the words Sensory Processing Disorder. He would then immediately make an appointment with the best OT in the area for an evaluation & demand it be no later than tomorrow. He would be totally on board with my theory & BabyGirl would begin her therapy & road to recovery tomorrow bright & early.

Instead it went more like this:
Doc: So, how are you ladies today?
Me: Well...we're OK.
Doc: What seems to be the problem?
Me: We think BabyGirl may have a Sensory Processing Disorder.
Doc: (after a moment long slightly confused stare) I don't think I've ever heard of that.

I attempted to explain it to him, but I think my description fell pretty short. He wasn't real keen on the idea of sending her to an Occupational Therapist immediately...it all sounds a bit fishy to him. I totally understand the feeling. It sounded fishy to me when I first began investigating it.

Before you start sending him hate mail (which I'm sure you want to do right now), the man is a good doctor. He's caring & conscientious. He did not blow the theory off, he's just never heard of it. Kind of hard to diagnose someone with a completely unknown (to you) disorder.

He is sending us to Riley's Children's Hospital in Indy soon. They're going to set up the appointment for us. Doc wants BabyGirl seen by specialists to rule out any skin conditions or other issues. He's right. That's exactly what needs to happen. I know that....it's just not what I wanted to happen. It's not the pat answer I had in my mind. He's not ruling out SPD, but he does want to send her somewhere where she'll be treated completely.

In the meantime, since my gut is still saying this isn't a behavioral problem and it's not an allergy, I plan on calling the principal in the morning to ask him if the school system has an OT. If so I want to talk to him/her about BabyGirl. There's no reason we can't pursue both ideas at once. I'd hate to put the idea of SPD on the back burner only to run the gauntlet medically to find nothing when we could have been working all along.

I came home ill, exhausted, disappointed, & depressed. Art gave me permission to cry with her post from this morning, and Grace gave me very sound & loving advice via email. I read both exactly when I need to read them & got out of them exactly what I needed to get.

Now I think I'll call it a night...and leave the worry for another day.

The Lighter Side

Since BabyGirl know what's going on, I think she's attempting to use it to her advantage. Saturday I heard her tell one of the boys, "You can't do that to me. It makes me itch because God made my brain different from everyone else's!"

In researching treatments, I've found a lot of parents who keep a small exercise trampoline in the house for their kids. I mentioned this to Husband yesterday on the way home from church. He took the boys to town to bowl with the church & picked one up at Wal-Mart. I really have no idea if this is something appropriate for BabyGirl's issues (mainly what I read was it's use for kids with sensory seeking behaviors), but I figured if he was on board and willing to help, go for it. It's not like it won't get use around here...and it may save my couch. When the FarmHands get wound up I can send them to bounce. It's nice (all except for the "GET OFF!! IT'S MY TURN!! I DIDN'T EVEN GET TO JUMP!!" But that's what they make kitchen timers for).

When guilt rears it's ugly head

Thank you all for your prayers & well wishes. And specifically to Ang, please do not feel guilty about not mentioning this earlier. This has been staring me in the face for years & I've only just accepted it.

I'm dealing with some pretty serious guilt at the moment. Husband has been trying to convince me that BabyGirl does really "itch" for quite a while. I refused to believe it because she has such a penchant for drama. He's bought her new shoes after I said not to, he's changed her clothes half a dozen times after I said not to, he's coddled & tried to manipulate her into dressing when I've taken a, "You will do as I say, when I say it," stance. I've always seen this as a control issue & not an actual condition she may be suffering from. It always reeked of manipulation on her part to me....and I'm miserable about that.

Others have mentioned to me in the past that maybe she's just very sensitive to clothing textures. But since we've tried nearly everything to get her dressed and bought numerous different types of underpants, socks, shoes, & clothes, I never took it seriously.

Yesterday I read treatment needs to begin before the child turns 7 & the nervous system is still malleable. That horrified me. 7?! If I had waited a few more months...ended out the school year...it would have been too late? Are we pushing it now?

And I'm struggling with how much to tell people. Part of me wants to scream it from the roof tops, "She has a disorder!! We can treat this!!" The other part of me wants to keep quiet until we have an actual medical diagnosis (regardless that my heart & mind tell me this is it). There are certain people we know who are gloom & doom...I don't want them saying anything negative near BabyGirl. Unfortunately they don't seem to understand that kids are listening even when you think they aren't. But at the same time, these people need to know because of their relationship to us.

Earlier this week I told her I was getting a book that might help us figure out why she itches & is so hot all the time. I told her there are kids who's brains tell them their bodies feel things differently than most people. "You have these little things all over your body called nerves. They're what feel everything for you. Your nerves send messages to your brain & your brain tells you how things feel. We think, for some reason, your brain tells you clothes are itchy when they really aren't & that lotion is hot." She took it all very well. Her first response was, "Is it like a sickness, Mommy?" I said, "No Baby. You're not sick. Your brain just works differently than everyone else's. We're going to see Dr. about it & there are people who can help you learn to not be so itchy." She was a little worried about shots & medicine, but I told her I've never seen where medicine helps this problem (I've never seen anything about meds in regards to SPD, and I've looked).

The Hand of God

I don't often attribute things directly to the Lord. Maybe I should, but I try to use caution when thinking something is from Him. Today I'm sure He has this entire situation under His control & is using it amazingly.

I'd never really blogged in detail about our issues with BabyGirl before this week. They've been very difficult to deal with, very hard to come to terms with, and harder to admit to. I've truly felt we were somehow failing her as parents. I really believed this to be a disciplinary issue...the tantrums, the refusals, the fighting. Last week I reached my breaking point. I no longer knew what to do. I couldn't cope. Everything seemed out of hand. It was truly the low point of my career as a mother.

I spent Saturday & Sunday trying to find a plan of action. I knew something had to be done, but had no idea where to start. I wanted to get counseling, but I'm leary of many secular counselors. Our rural community doesn't offer much in the way of options. So I prayed. Quite a bit. I told the Lord I couldn't handle this any more & I was truly scared for BabyGirl. I knew something was wrong & beyond my ability to help her.

Earlier this week I blogged about escaping to Busha's. I said more about our struggles in that post than I ever have before. Samantha stumbled upon my post the next day. To quote her directly, "...my daughter was taking an usually late and long nap and I was procrastinating from the household chores. I had come across your blog a few times before, but I was really just trying to kill time before my pumpkin awoke. Funny how things work out, huh?" She's the one who suggested BabyGirl might have a sensory issue. QM called me to tell me about Samantha's comment & thus began our journey down this road.

Since that post I've had more than one person comment that this might be an actual disorder and not just our imagination. Zann put me in touch with her sister who's two girls have struggled with similar problems. She emailed me yesterday & I can say reading about her youngest is like reading about our BabyGirl. Nan emailed me to say her daughter-in-law wondered if we weren't looking at SPD. She's an Occupational Therapist & has a good deal of experience treating kids like BabyGirl.

If it hadn't been for the influx of information, I'm not sure I could have handled what happend Thursday afternoon. I was exhausted from a night up with a teething Bitsy, a trip to town, bathing the boys who had just come in from playing in the 1/2 inch of snow on the ground, putting away the groceries, trying to cook lunch, and dealing with a squalling Bitsy all at the same time. The phone rang. When I answered, BabyGirl's pricipal apologized for calling & explained they had concerns about BabyGirl's behavior. Her teacher (and one other) had noticed her putting her hands in her clothing frequently. Her teacher (Mrs.G) thought she was "touching herself" and was required by law to report the behavior to the principal. Her teacher goes to church with Busha & Bucka so she knows our family outside of the school setting to an extent. Mrs.G was so upset about having to report it, and Mr.C (the principal) was equally upset about having to call me.

I told him what we had just learned about SPD and that we were investigating the chance that BabyGirl has it. He was so very understanding. His first words were, "That makes perfect sense!" Mr.C said to be sure to keep them informed and if there was anything the school could do to help, don't hesitate to ask. I thank the Lord Mr.C's not one for jumping to conclusions.

I went in the kitchen & cried...a lot. What would we have done or said had he called a week earlier? Would we be dealing with Social Services instead of offering a simple explanation to a very rational principal?

I went in to talk to Mrs.G that afternoon after school let out. She was so very relieved to have me there. She told me she'd been struggling with her decision all week & had been a wreck ever since she had to talk to Mr.C about it. I explained what little we knew at the time about SPD and gave her a list of web sites I'd found that have been very helpful. She said she would pass them on to Mr.C as well so they will all be in the know. Mrs.G also said she thinks an Occupational Therapist would come to the school to work with BabyGirl.

There is no doubt in my mind that God had His hand in the timing of all this. Not to mention the doors that have opened through my blogging. If not for the blogging community I've been a part of for the past two years, we'd still be fighting a loosing battle. He is good & I am thankful.

Just a beginning.

I decided there was a very real chance SPD could take over my other blog, so I decided to bring the party over here. At the moment I'm still setting all this up, so it may be a while before I actually post anything worth wild. There are so many thoughts running laps around in my head....I need to compile them into something mildly coherent.

One thing I will say: BabyGirl has an appointment with our family doctor on Monday. It's a start. I'm not sure what all he'll be able to do for us, but at least he can steer us where we need to go.

Oh, and I'm also a wee bit irritated. I ordered the book The Out-of-Sync Child Wednesday night. I was really looking forward to getting it Tuesday or Wednesday. This morning I found out it's been shipped media mail & we might not see it for 10-14 days!! All I can say is thank the Lord for Internet groups & SPD info sites. Otherwise I'd have gone stir crazy. As it is, don't fret if you've been trying to get ahold of me for the past 4 days or so. I've spent most of my time on the phone and computer trying to get info about this. More on that later.