Sunday, May 30, 2010

Musings, Reflections, and Dumping....

If you have followed along with our journey so far, you know that our family has been through the wringer a few times. Each time I realize all over again one of the reasons we go through these is to draw me closer to my God, to remind me yet again that that He LOVES me, and that HE wants a relationship with ME. Amazing.

This current situation is no different. Our pastor spoke this morning about creating space in our lives. About slowing down. Giving ourselves a margin. Yeah. Ouch. I was already trying to pull back from things a couple of months ago. Some of my friends will remember that I asked for help in sorting through my commitments, prioritizing them. I was able to drop a few things...just in time of a new spate of doctor's appointments and physical therapy, which immediately ate up every bit of margin I had eeked out of my crowded schedule.

This weekend has been a MUCH-needed restful one. We went to Colonial Williamsburg. We hung out with friends. We have grilling, laundry, and a trip to the beach planned for tomorrow. I slept. Friday night I slept for 10 hours. Last night I got about 7 hours. This afternoon I took a 3 hour nap. I am STILL exhausted.

I have found that when I am tired I lose perspective in a hurry. I start throwing blame around. I get emotional and (for lack of a better word) b*tchy. In general, a really NOT nice person to be around.

I hate when I get this way. I am overwhelmed. I am sad. I am emotional. I want answers for my daughter...and yet I am afraid of what those answers will mean for her and us. There is WAY too much going on in my life right now for me to take a break from life, which is what I really want to do. I want to take a sabbatical. To go away to a cabin in the mountains and read, and rest, and write. Yeah, not happening for a while.

Meanwhile, there is so much to anticipate happening in the next 3 to 9 months. A move. New schools. A deployment. And whatever those dreaded/anticipated results bring on Tuesday.

So, I have a question for any parents who have dealt long-term with their own children's health issues...right now things are in crisis mode. How do you deal, long-term? What can I expect? How do I keep the balance in the house, with the kids? How do I *not* lose it?

I depend on your prayers my friends. Thank you for holding us up...

Friday, May 28, 2010

Still waiting...

After a minor panic attack that the MRI visit had to have its own referral, and then finding out it wasn't so, the visit for the MRI went off without a hitch. The staff was really good, friendly, with great customer service. So now we wait for the results....and that means that since this is a holiday weekend, we'll have to wait until Tuesday. Yippee.

So, we are going to have some fun this weekend....a friend from South Carolina is here, and we plan to get in a lot of fun and relaxation. Colonial Williamsburg is free to military and their families (and veterans of all stripes) this weekend. The pool opens, and the weather outside is BEAUTIFUL! I intend to have a GREAT weekend, and not even think about MRIs and Neurologists and results for about 3 days....

Have a GREAT Memorial Day Weekend!!

Wednesday, May 26, 2010

The next step...

Thursday, 3:00 p.m.
MRI of the cervical spine.
Praying they figure out what is going on.

In other news...the counselor does NOT view Frances as someone who would be likely to have psychosomatic type things...her personality type does not fit. Thank you. I could have told you that. Anyway...more testing to prove it. Yippee.

Keep praying. God's got this.

Friday, May 21, 2010

Frustrated and angry...

I wanted to cry all the way back from the office of the pediatric neurologist today. I didn't. I DID cry in frustration in front of him.

I wanted to scream at him as he sat there with his smug I-am-god-hear-me-roar attitude. I didn't. I DID question why he couldn't come up with any more possibilities besides a psychogenic/psychosomatic disorder.

I wanted to beat myself up for getting my hopes up. I'd like to say I didn't do that...but in reality I am still doing that. I am also beating myself for actually buying into his spiel.

Our trip over to see the neurologist today was quite likely a collossal waste of time. The ONLY positive that came out of it was having him order an MRI of her cervical spine. That was only part of what I wanted. I really wanted them to do an MRI of her head and full spine. Really...she's going to be there anyway...why not go ahead with the whole thing?

So, you take one teen who can feel nothing in her hands and arms. Add in one concerned mother, and an unnamed, undescribed neurologist, and you get a "diagnosis" of psychosomatic or psychogenic illness....not saying she's faking it. He used words like "self-hypnosis"....really?!? Said that *I* am causing this to be prolonged by giving it any attention. Seriously?!? like I don't already have enough Mommy-Guilt happening.

What next? I have no idea. I don't know where to start. I know she already has an appointment with a counselor on Monday. Which the *&&^%% neurologist thinks will be useless. Whatever.

I wonder how many of his "20% of all cases we see" that he claims are psychosomatic go on to find a different diagnosis from a doctor that gives a crap.

Tuesday, May 18, 2010

Update on Frances

I was educated on Sunday on some more help that the school *should* be giving us...because Frances can't write on some days, her grades are falling. Most of her teachers are VERY helpful. One, however, considers ANY help to be cheating. Huh? How can accommodating a disability be cheating? Ahem.

So, I was educated. Informed that the schools have LOTS of extra laptops that can be loaned to Frances for her to take notes, take tests, etc.

And I called the school to talk to the nurse, since she seems to be the one that handles anything to do with accommodating students with injuries or disabilities. I talked with the nurse's assistant, who was very knowledgeable of the teacher who is the least helpful/most hindering...hmmm...maybe this is not the first time this has happened?

I haven't heard anything back yet. I will call again tomorrow.

Friday is Frances' appointment with the neurologist. I got the packet from them in the mail, and was both encouraged and overwhelmed. They want details about her monthly development as a child...what month did she sit up? what month did she stand? what month did she say dada? Oh, boy. The encouraging part was that they actually asked these questions...the other neuro....not so much...

I pulled out the baby books. HA! It might have been a good idea to write all of that stuff down, after all........so the neurologist gets "no remembered delays."

I have been talking some more with the physical therapist, who is writing up a report for us to take to the appointment. Her research is coming up empty with anything related to the spine as the cause. It is looking more and more like a CENTRAL nervous system problem, i.e. brain or brain stem. Mom is getting more and more scared....and anxious for the appointment.

Frances is just upset that she's going to have to be out of school for the whole day. Yeah, my kids LOVE school....they're cool that way!!

So please, keep praying. Again, we know God's got this. He has a plan. I just wish I knew what it was right now....because the unknownness of this is killing me. Thank you for your encouraging words, and your prayers...they sustain me....

Sunday, May 9, 2010

Where to begin?

I just realized that it has been almost 4 months since I wrote here. I apologize. There are plenty of excuses, and a few reasons. I think the main one would be discouragement.

Actually, discouraged does not begin to describe where we are with Frances' treatment for the numbness in her arms and hands. Since I last updated everyone, she saw a neurologist. I won't tell you what I think of him. I will just say that, because all of the tests came back negative, the conclusion was that the cause of her numbness is psychosomatic, i.e., it's all in her head. That was in January. We followed up with the primary practice, who then told us there was nothing else they could do, and to come back if there were a change.

Since then, the numbness has progressed a bit further up her arms, and she is having trouble, sporadically, with holding a pencil to write at school. There is no difficulty with strength...the main issue seems to be that she cannot feel that she is holding the pencil, and cannot make it cooperate to write on paper. Very clear, huh? She is getting more frustrated. I am getting more frustrated.

I requested the school provide a second set of books, so she wouldn't have to haul 30 pounds of books back and forth to school every day. They required a doctor's note to do that....so we went BACK to the primary practice. This time, I INSISTED on 3 things when we went in there. First, the note....got it. Second, physical therapy to deal with the pain in her back, and third, a referral for a second opinion with a neurologist at the local children's hospital. I got all three things I requested.

Frances has started physical therapy, and the therapist doing a lot of testing on Frances, trying to figure out the numbness thing, too. She (the PT) started off saying that the way Frances was describing things was fairly classic for psychosomatic symptoms...but has since revised herself, to say that she does not believe that Frances is making things up...she really can NOT feel anything in her hands and arms. AT ALL.

Meanwhile, the referral for the second opinion popped us right back over the the same place we went before...perhaps to a different neurologist, but I did not trust that to be an unbiased opinion, and called requesting, yet again, that we be sent to the Children's Hospital of the King's Daughters. This time, I really got what I wanted...and have an appointment for her to go in later this month.

Finally, I feel like I caved under pressure...I have made Frances an appointment to be evaluated on the off chance that this is psychosomatic. I know it can't hurt her to talk to someone...especially since we have a great Christian counseling group here. I just do not believe that is the source of the problem. That is scheduled for 3 days after the appointment with the neurologist.

Meanwhile....

Life goes on. There are 5 other kids in this family, as well as me and my husband. All six kids are in school. There is homework every day. Jason and I are leading small groups (Jason has 2!), and are deeply involved at church, and in ministry to hurting people around us. Softball and baseball seasons have started. The school year is winding down. I am still working from home. Jason is still working on his second Masters...3 classes left! I am gearing up to start on my Masters. We are attempting to buy a house. I have been in physical therapy since sometime in February.

Some days I want to scream "STOP THIS RIDE....I WANT OFF!" But things seem to keep moving faster and faster, and I have no control.

I don't like change. I don't like the hectic pace we are living at. I am scared to death that my daughter has something that is really scary to think about. I am scared that because we're not finding answers, we are waiting too long, and there will be no reversing the damage already done. I'm sure I am NOT ready for what the next 6 to 9 months hold...but there is not holding back time.

I keep reminding myself that God is in control of this ride. I know that He knows what my future holds, and that He has good and not harm planned for me, and for my husband and children. I get that. But in the trenches where I am hunkered up right now, I have to be reminded of that very often, because the immediacy of issues keep distracting me from the bigger picture that God loves me and my family, and wants what is best for me.

So, please keep praying. Thank you for your prayers so far. I am clinging to those, desperately.