Friday, May 6, 2011

Just Stay Calm

This morning I got to take Nate to PT. His dad usually takes him, but I had the day off and love to see all the cool things he's doing at PT. They are just starting to work on walking up stairs without holding on to the railing. He's not totally able or comfortable doing it yet, but with his PT's help, he got to the top of the 5 steps.

He's also working a lot on jumping--that's his favorite thing to practice. Today he jumped over 3 boards in a row. The next thing on their assessment form for him to master is to hop hop hop three times in a row without stopping, and right now he can hop twice. I know he'll get there soon (then again, who really cares if he can hop three times in a row--we're studying for the test on this one).

We talked about Nate's gait--it really is pretty "normal" but his foot lands flatter than it should. She is working with him on standing up by pushing on one knee, instead of the old hand-hand-foot-foot trick we've been doing for so long now. She again told me that he is functioning at about an S1 level, which makes me happy every time I hear it, since he was an L2.

Overall, I was very pleased and proud of Nate's progress. It was a good day.

Then it was time for him to ride the horse, and he worked hard there too. But as he got off the horse, his PT told me that Nate's pants were wet. The horse's blankets were wet too, and they had to make plans for washing them. I was embarrassed. Nate was not. The PT asked if we were cathing or potty training, and I told her that we planned to try potty training when Nate is ready, but he has no interest right now. He'll be 5 next month. We're following the urologist's advice to wait until he's interested. The PT said out loud what I was thinking, "Yeah, but what if he's 8 before he decides he wants to do it?" Yes, and what if the thing that makes him want to potty train is another child making fun of him? I know. I get it.

Then she said, "Well, now that he's bigger, he may need a heavier duty diaper." Gut punch. Special diapers for big kids. No, no, no. I cried on the way home. The old panic came back. All of the great progress I saw just a few minutes ago meant nothing, because I was going to have to buy my child special diapers for big kids.

I prayed for wisdom. I called my mom, but she was in a dentist appointment--how dare she not be there every second I need her! Then I called the urologist's office and asked to speak with a nurse. This is how my brain works when I need advice--Ask God, then my mom, then the medical professionals. :)

I told the nurse that this has been happening with increasing frequency. I will put a dry pullup on Nate, then a couple hours later, all of a sudden he leaks on his pants. It's happened twice in the past week, and several times in the past month. This didn't use to happen. While she was telling me that at least it was good that he was voiding, I remembered something and interrupted her. Last week Nate was telling me something hurt and was pointing to his bladder area. I took him to the doctor to see if he had his first UTI, but he did not. Also, we suspect that Nate is constipated (it's hard to tell with him). Could all of this be related?

Yes. It sounds like he's constipated, and it's putting pressure on his bladder. He's holding it all in too long and then when he does go, it's enough to flood his pull up. Do a good miralax clean out and see if this stops. She wants us to add a daily dose of miralax also, and I don't like miralax, but I also know that if he's chronically constipated, he won't be able to potty train even if/when he decides he wants to.

After I had a plan and a probable reason for the problem and could put the idea of adult diapers out of mind for the moment, I remembered all his progress I saw earlier today. And not just the physical accomplishments but also his attitude and character. He works so hard at PT. When they were working on walking up stairs on his own, he was unsteady and scared. But he tried it anyway, not quite knowing how to do it. When he got to the top of those five stairs, he said, "I'll do it better next time." And he did. He tried again and did it better the next time. That stuck with me all day.

How do I forget the important things? That God has a plan for Nate, and that plan is good. That God uses people's weaknesses to show his strength. And that the physical condition of our kids is not as important as their character.

I also have to remind myself that Nate is not sad that he is not potty trained. He is totally happy with not using the potty, lol. All this sadness is me feeling sorry for myself, not Nate. I like to think that I am just sad for my son, but the truth is that I am sad for myself, and I need to get over myself.

In the midst of my freakout, I see this verse on Facebook (probably by one of you): "The Lord himself will fight for you. Just stay calm." Exodus 14:14

Just stay calm, Colleen. You don't have to figure this out on your own. You can't see the future. But you have the creator of the universe, and the creator of your son, on your side, and he is all over this. Just stay calm. But you might want to see a professional if you keep talking to yourself like this.


Stefanie said...

You know your son best, but I did have a thought that maybe he can feel when his bladder is full. Maybe not the same way we do, but maybe there is something there. It would explain the "pain" in his bladder and he might actually holding it all in until finally it just all comes out at once. I don't want to add any false hope or plant a seed...but that was the first thing I thought of as I read your post.

I also love the scripture...always a good reminder.

The Forest Minstrel said...

Speaking from the experience of a massage therapist trained in Reflexology, I have a suggestion for Nates constipation, rub his feet. There are over 500 nerve endings in the foot and God made our bodies to react to certain pressure points in our feet. Start with the right foot, just above the heel and at the arch, applying just a little pressure (it really doesn't take much) slide your thumb toward the outer side of the foot stopping just a 1/2 inch from the edge. Now, slide up to just below the ball of the foot and back toward the arch. Move to the left foot and start at the arch just below the ball of the foot sliding your thumb toward the outer edge to a 1/2 inch from the edge and slide down to just above the heel, curving in to slide toward the arch. You've just outlined the ascending and decending colon. Do this for three to five minutes and I can guarantee (from much experience) that within 24-48 hours, there WILL be a BM. If you feel a "crunchy" or "different" feel in one area, gently smooth over it several times, always following the same direction. And a good dollop of lotion will make it all easier and smoother as you rub over his little feet. I've done this to numerous adults and children and it's worked every time. I've not done it to a child with Spina Bifida (Karen hasn't mentioned that Carson has any problems with that, yet... but "Auntie" may still get called to doodie duty ~snork~), but nerves reroute themselves (we are, after all, fearfully and wonderfully made!) and I have no doubts it will work!

Gretchen said...

Just stay calm... so much easier said than done!!

I hear you on so much of this... it is like you are telling our story! But I do have to say this one thing, and PLEASE Colleen, hear this as CARING!!!

We were told for YEARS not to puch Nathaniel to self cath until he was ready. Wait, wait, wait... you know. All of the sudden he turned 9 and it became "Why isn't he self cathing? You are enabling him. You are not helping him mature." Like your Nate, my Nathaniel has NO INTEREST in the toilet, in cathing, in his diapers, none of it. I WISH I had made thie routine for him when he was younger and routines were so much easier to teach!!! So MAYBE, think about introducing some sort of routine to him, with lots of positive attention or rewards, and see if he gts interested BEFORE he gets set in his ways.

FOr my Nathaniel, he is FINALLY self cathing. He is fully capable of doing it and when he is at school or with care providers he does it like a champ (yes I have spied on him... I KNOW this) but with me he STILL pitches a fit and BEGS me to do it for him.... and he will be 11 next month! He tells me it is a "bother" and he is "bored" of doing it... sigh.

Best of luck to you and I will add this to our prayer list :)