Friday, June 25, 2010

My Middle Daughter (Part 2)

Today we went to the Urologist for my middle daughter. He is giving us a referral for outside our HMO for the Pediatric Urologist at the local university children's hospital out here. The reason for the referral is she has one kidney, recently had a kidney infection, and her ultrasound came back with a small change (my water on the kidney) than before. They will test her with a VCUG (which tests for reflux from her bladder to her kidney) and with a Renal scan. She had those tests done at 9 months before the removal of her kidney, but because of the current events, they are testing again.

We also have issues with bladder and bowel control. In addition, unrelated, I believe, she has issues with stomach pain and some minor behavior issues (repetitiveness, hoarding). But, she is a bright and beautiful young girl full of enthusiasm and frequently given to make me laugh. A gluten free diet has helped significantly with the stomach pain and bowel issues as well as with the behavior. She has tested negatively for Celiac and for an allergy to wheat, so the doctors look at me skeptically when I tell them she is gluten free. But, every time we give wheat a try again, her behavior accelerates (she hoardes food a lot and other things like pieces of paper, she doesn't listen, she sings or talks repetitively), plus her gut hurts her more.

Gluten free did not completely improve her bowel and bladder issues however, but it does seem to impact them. I'm not sure why. I just know that every time we go back on we have more issues. Her bowel and bladder issues likely stem from her kidney issues. As I shared in part one of this story, her #1 kidney had a blocked ureter and was basically useless from before birth. They took it out shortly before age one. Her #2 kidney looked basically alright, a little hydronephrosis (water on kidney) but that is to be expected, I have been told, when a kidney has been doing the work of two kidneys. Anyhow, anytime the nerves are not quite right with the whole bladder/ureter/kidney thing down there, it makes it more common to be slow to develop sensitivity in the bladder and the bowels. How I wish I fully understood this from the beginning and could do things differently with her. Sure, I understood, some kids aren't ready for potty training by age three or three and a half, but four or five?? My pediatrician's suggestion (and the suggestion of other doctors) of giving her Miralax only made things worse. But, it didn't feel as if they believed me.

At about age five and a half, after trying gluten free and seeing some success, but not a lot, I read an article in Spectrum Magazine (a magazine about ADHD, Aspergers and Autism). It was an article on potty training an Asperger's child. It was the first article that made complete sense to me. Some children, don't have the normal pressure and sense to want to potty train. You need to make things really desirable for them and you need to have a lot of patience and realize it's normal for them to be four, five, or six when they potty train. I can't remember every piece of advice the doctor had in that article, but I remember the one that helped us... You set up a reward system...not just stickers (I think that's what doctors think I did when I tell them I set up a reward system). You give the child something tangible (tokens or something like that). I bought squares from the learning palace. Every time my daughter has success I give her a certain number of tokens. More for staying dry all night or for going poo poo, than for pee pee. And lots of praise and "I knew you could do it"'s. She puts those tokens in a jar (which believe me to my daughter holding the tokens is essential) and when she fills it she gets to go out with me and buy something (usually something around $5). She still needs this system. One day I hope she will have grown out of it. But, now it is essential for us.

So, despite her best efforts, my middle daughter still has accidents...mostly wetting at night and an occasional daytime wetting accident. Sometimes she gets a little staining on her underwear. But, this is soooo much better than a year ago. I can't tell you how hard it was to figure all this out and go through this. Who else experienced it? Who wanted to talk about it? How unacceptable is it socially for a six year old to have potty accidents all the time? When she goes to longer classes (more than an art class or her dance class party or perhaps vacation bible school)'s challenging, because I really can't expect the teachers to send her potty once an hour.

Well, that is my daughter's story. And, I love her. Yet, I've struggled with this challenge and at times I've been mad. That's life, I guess. Neither she nor I are perfect. God has grace for both of us.

Tuesday, June 15, 2010

Miscellaneous Post

Today, we went and had the girl's dance pictures taken. It was at a beautiful and crowded local park here and it was beautiful weather. My husband took the oldest (my stepdaughter) and the youngest (the toddler) with him today to do a fence project (I think he LOVES building fence, go figure). I had a peaceful day with the middle kids. They were so cooperative with just the two of them. And, I got to fellowship with different ladies at the dance picture (their dance is a Christian dance program - so that makes it nice). When I got home (around 3), I started making dinner (which took me several hours, I'm slow when I'm pregnant). But, it was all done ahead of time. So, in the evening when my husband came home from his fence work, I got to spend time outdoors with him.

My older daughter is on her second round of eardrops for an outer ear infection today. I'm hoping it clears up and we don't need oral antibiotics. My middle, six year old daughter, finished up her oral antibiotics for a kidney infection just recently. I need to get her into the urologist soon. I have to call between 8 am and 8:30 am on Monday morning to set up that appointment. I rarely get up before 9:00, but I guess I will for that.

I really can't say that I was feeling that positive about my pregnancy here recently. Following my daughter's kidney infection, I was getting lots of Braxton Hicks (I think I was stressed and short on sleep). Then, even after that subsided my back and hips were hurting me to the point where I felt like I could hardly do anything. Then, you know, the state of my house was falling apart. During my 2nd pregnancy, I had lower back pain that eased up with Chiropractic. I was totally feeling like, "I don't want to go to another doctor period." - because it seemed like every OB appointment was a reminder of how much I weighed. I've had problems with serious varicose veins this pregnancy too and in the midst of all my emotion, my good compression hose were buried somewhere in the laundry and I was having pain from that too. So, anyhow, eventually, I thought, "this is all stupid me not wanting to go to a doctor". And I had my husband arrange for a chiropractic appointment for me (I just didn't feel up to calling). Anyhow, two appointments and a couple ice packs and I feel able to get around again. Thanks be to God. I'm sure I'll still have challenges, after all the trying of our faith produces perseverence, you know, but there is light at the end of tunnel. Most specifically, I have a beautiful bouncing boy expected around here August 15.

In Him,


Monday, June 7, 2010

Kidney Infection (Part One)

My middle girl is a complicated one. In so many ways. This weekend we discovered she had a kidney infection.

We discovered my little girl had one abnormal kidney when I was pregnant with her. Oh, strong emotion. What does this mean? Will she be alright? What does this mean for her life. We got with the Urologist and talked about the possibilities and he settled my emotions.

"Most likely this means that she’ll only have one kidney. We might choose to try and fix the enlarged kidney or we might remove it, but we’ll probably wait a while until we do either thing. Her healthy kidney will do most of the work."

When she was born her pediatrician ran all sorts of kidney functions tests. They all came out normal. At about seven-eight months the Urologist ordered the big-gun tests for kidney functions. One test was a nuclear test where they inject nuclear dye into her, have her lay very still in front of a nuclear imaging machine and watch how the kidneys clear the nuclear particles.

My daughter did wonderfully. At that age she was such a cooperative, happy, still baby. I remember the horrible rashes she had then. I was always treating her skin with moisturizer and hydrocortisone and other medications. It was always out of control…especially in the diaper area. If she had a poopy on her for one minute (literally one minute) her bottom would bleed horribly. I think that started from the age that I introduced food to her. Anyhow, I told you my daughter was a complicated girl, but back to where I left off in my story:

The urologist also ordered a urethral reflux tests where they give her this special chalk substance through a catheter and take moving X-rays (many fast X-rays) to watch if there are any signs of the urine moving up from the bladder to the kidneys. Again, at seven-eight months, my daughter did wonderfully. Those would have been hard tests to give to a child who was more aware.

At about 10 months she got her enlarged kidney removed (hydronephrosis is what they call it). After they removed the kidney, they told us it looked like an over-inflated balloon that had lost its air and that it hadn’t been doing any of the work of her kidneys. They also looked around at the other ureter and everything looked “ok” but that they would monitor it.

When she was two or three she got another ultrasound (she had gotten several around the time of that surgery). The doctor said everything looked fine but that we would monitor it over the years. All along we talked about things to keep her kidney safe…watch for bladder infections…don’t give her cranberry juice because the oxalic acid in the cranberry juice can cause kidney stones…she shouldn’t do motorcross or football. That was the joke, she only has one kidney, so we don’t want her to do any extreme sports. (By the way, this girl of mine is soooo the football, tackling type.)

The ultrasound results did say things on it like hydronephrosis on this kidney looks stable. Or looks slightly improved. I was concerned by words like these because I didn’t know this kidney had any hydonephrosis going on. The Urologist showed me her ultrasound and explained what the radiologist was seeing when they wrote that and that although it showed some signs of hydronephrosis, it was within normal range of a kidney that did the work of two kidneys, and he wasn’t highly concerned about it.

My daughter had other (mild) issues going on. They weren’t mild to me though. Around four we were still having major potty issues. The Urologist is one of the people to talk to about this too.

This story is to be continued...

Not Much Happening

Really, not much has been happening around here – except for taking my daughter to the doctor, the persistent rain, and the kids normal activities – today was art and violin, tomorrow is dance.

I also think I’ve got to get my older daughter in to the doctor too because I think she isn’t hearing well and her ear hurts. She had an outer ear infection she got drops for. I’ll bet it never went away. But, she never told me. I told her today, “you need to tell me, you could lose hearing if you keep having ear infections”. My two older ones always have these quirky health problems going on with them and I’m always worried that the doctors think I am an over-worried mom – but the lives and livelihood of my children rest in my hands, so I guess what doctors think of me is less important.

I’ll finish my middle daughter’s story here soon. With the darkness of the heavy rains we’ve had here in the Northwest this May and the third trimester uncomfortability factor – I haven’t been taking pictures to go with my postings.

Here are some other observations from today:

"It’s a sad day for the cows today as they huddle against the fence line to attain some shelter from the winter-like rains by the neighbor’s 50 foot fir trees…even though the field is full of lusciously delicious green spring pasture they normally revel in. The frogs, however, are completely ecstatic, since they have found numerous new breeding grounds at the top of our property, rather than in the lowlands near the pond."

"Turkeys are funny. We moved them from the field to our yard because the chickens were pecking them. Now they are hanging out on our front porch “knocking” on the door because they want to be with us. Unfortunately, unlike a cat or dog, they don’t know not to do their business on the front porch."

"My kids are so excited (translation…hyper) today. I think it’s the schedule change and signing up for next year’s creative classes and buying next year’s music books. I’m in need of some routine. Natalie’s birthday this weekend. Good thing we just do family birthdays."