Simply Saturday

With Paul out of town on business this weekend, the kids and I had no big plans. We had a lazy morning and then did some light housework. But mostly, we just enjoyed a simple day. The boys did a lot of reading, which is one of their favorite activities. Isabel played with Barbies, when she wasn't searching baby name books for names for our next child! WHAT? Yeah, she's convinced that we are soon going to adopt a boy and a girl from AMBIOPIA!? Where? I finally figured out that she meant Ethiopia! OH MY GOODNESS! Before anyone gets any ideas, we have no plans to have any more children.............anytime soon. :)

Late in the afternoon, we went out for some exercise.

Hmmm... well, Isabel got some exercise!

Most of our weekends are filled with kids sports activities, errand running, home improvement and yard work. Don't worry, I'm sure we'll be back on tract soon! But today.....

today we just hung out and hung around.

Our week days are so crazy these days with homeschool for 3 children, activities for Claire, doctor's appointments and just keeping up with the house. I got the chance to just breathe today and think about how thankful I am for everything. All the children are healthy, Lizzie is having the time of her life in college, Paul is employed (so many are not right now), we have a roof over our heads (and it isn't leaking anymore!!), and food in the pantry. "Plus also", (can you tell, I've been reading Junie B. Jones to Isabel!) we have wonderful family and friends for support and that is the "bestest thing I love!"...what more could I ask for! Oh, for Paul to come home! Hurry honey, we miss you!

A little help!

I had a little helper in the kitchen tonight!

Painting the olive oil on the crust -

whole wheat, all natural of course! :)

Spooning on the sauce.


A little cheese for the pizza.

A little cheese for Claire!

Placing each little black olive

Pizza! Yummy!

I wonder if she ever did that before?

Nothing definitive

I was hoping for a yes or no answer yesterday, but I did not get one. Understandably, this guy does not want to rush Claire into a surgery when she is clearly doing very well right now. While she did run a low temperature on Tuesday evening, it went away on it's own very quickly. And, though she did have cloudy urine, which did not clear up, it also did not get progressively worse. Those were all good signs! One symptom, which you would think would be good, is not. Claire remains completely dry between catherizations. This is very uncommon with neurogenic bladder unless you are taking medications, like Ditropan, to relax the bladder muscle so it can hold more urine. Dr. A. believes that she does not "leak" because she is still refluxing. And, that is not good.


At our last visit, Dr. A put Claire on a regimen of twice a day antibiotics for a period of 30 days. He intended her to refill this bottle and continue on, but he failed to put a refill on the prescription so I thought he meant for her to stop them when the bottle was empty. She did and he was impressed that she did not have a full blown relapse but he thinks it is best if she stay on prophylactic antibiotics. So, we are back on Furadantin, but only once a day now to see how she does with that.


He is "cautiously" hopeful that her reflux and the condition of her ureters will improve with antibiotics and CIC (clean intermittent catheterization), but he still feels that in the end, she will benefit from ureteral reimplant surgery. If she has another UTI in the next three months, then it's a done deal. Otherwise, we continue as is until December. On December 3rd, Claire will go in for another renal ultrasound and VCUG (voiding cystourethrogram). This test will check the condition of her bladder and ureters as well as expose the level of reflux she has. The first time she had this test she was at a level 5 on a scale of 1-5 with 5 being the worse! Many children improve once CIC begins but I say the Doc is "cautiously" hopeful because he admitted that a lot of damage was done to Claire's bladder and ureters during her life in China and he isn't entirely sure that she can recover on her own. He also feels that while her kidneys are still in good shape, she lost some kidney tissue to damage (this was the first anyone mentioned of this) and he doesn't want her to sustain anymore damage caused by continuous reflux and infections.


So, I guess my answer is.....we still don't know. He sounds like he really feels she needs the surgery but he wants to give her body some time to heal itself first.


One question I am often asked about all this is "will surgery cure her condition?" The intention of the surgery is to eliminate the reflux issue. There is not a "cure" for neurogenic bladder. The nerves that control Claire's bladder were damaged as a result of her spina bifida. In other words, she was born this way. At this time, there is not a way to repair those nerves so there is no way to "cure" this condition. It can be managed and many, many children and adults do just that. As Claire grows older, she will be able to learn to catheterize herself. Though I have exposed her "secret" to all our family and friends, not to mention strangers on this blog, theoretically, she could go through her adult life without her friends even knowing unless she choose to bring them into the loop. It is my hope that she grows up to understand that God made her this way and that it is nothing to be embarrassed or upset about so it doesn't matter who knows. Realistically, I know she will go through a time when she doesn't want everyone discussing these aspects of her life. But for now, we act like it's nothing unusual. Maybe I'm wrong, but I think that's a healthy attitude. I just have to hold onto the thought that the Father chose us for her and that He knew how we'd parent her. Hopefully He won't let us make any mistakes that can't be rectified!!


For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.


~Psalm 139:13-14

Our happy girl!

She knows plenty of English now!

Yesterday she pointed to her nose and said, "see booger!" Hmmmmm....I wonder where she learned that? I could take three guesses and probably get it right all three times! Here's a cute video of her playing with her babydoll before nap yesterday. She can be talking up a storm and when I get the camera out she clams up, but I got a few words on here. Have I told you lately that I LOVE being this kid's mommy!

(Don't forget to turn off the music)

Today is the day that we have our follow-up visit with our urologist. At our first visit, Dr. Aaronson believed that the reflux of urine back into Claire's kidneys was a major contributor in the fact that she could not get over that nasty uriniary tract infection. He seemed pretty certain that she would need surgery to reimplant her ureters at a different angle on her bladder to prevent the reflux. But, he wanted to put her on antibiotic therapy first, just to see if it would clear up and if she could keep it away. Well, after 30+ days on antibiotics, Claire had her last dose on Friday morning. Last night, the low grade temperature that has been present preceding all other UTIs, returned. This morings urine was cloudy and that is a tell tell sign of UTI. The indications are that she will need the surgery after all. I am mentally prepared for this outcome, but I'm always up for being pleasantly surprised so I will wait for the Doctor's evaluation tomorrow. I would love for her not to need anymore surgery, but if it will help her stay healthy, then I'm just so thankful for the medical knowledge that will provide that opportunity for her!

Had a good day.........

Claire did not! Her day started with an early morning trip to the dentist for some of that dental work she needed. I have to say, I don't know how my working friends do it....getting up at the crack o'dawn and getting kids off to school. I think getting up before 7am is barbaric! But, I did it....had too. I got up at 6:30 *gasp* and got myself dressed with hair and makeup (I'm a simple girl so it doesn't take long) before getting the kids up at 6:45. The kids thought I'd lost my mind getting them up 15 whole minutes early! Good grief! I think they are a little spoiled. Once, early in our homeschooling journey, I got tired of having them complain about how early they had to get up, so I got them up at 5:45 like our good friends Nick and Maggie. I made them get dressed, make their beds, eat breakfast and go to the car. Then we sat in the car for 30 minutes to "get to school" because in our traffic, it could take that long. Of course, they thought I was nuts that day but they didn't complain for quite a while afterwards! Clearly they have forgotten this lesson and we may need to have a little refresher course!

Anyway, I left the house at 7:15 for a 7:45 appointment that is 15 minutes from our house but we have traffic to deal with at that ungodly hour so......I was still late! Claire was not particularly crazy about this plan as it did not involve her oatmeal which she kept asking for. Sorry baby! When we got there, they ushered us to a dimly lit room, had me sign some waivers and then gave Claire some liquid sleep. None of my other children have had this experience, so this was a first for me. I made them go to a regular dentist and go under the drill holding my hand. I know, horrors! But, Claire is different because she is a little younger then they were and because I can't explain to her, in words that she would understand, what is going to happen or that it will all be okay. So, she had her drugs and within 20 minutes I knew for certain that she was Paul's daughter. She got louder and louder! Most people won't believe this, because she seems so shy and demure, but she was demanding water and oatmeal and she was doing it very loudly! Then she began looking around in my purse and asked "where bicycle go? where helmet go?" Uhhhh, in the garage? Finally, she drifted off and we took her back to "the room". Seriously, she did great, especially considering she woke up long enough to realize that they were strapping her to a board like papoose thing in the chair. But she drifted off again after a few minutes of gas and the Dr. got two cavities filled and all her molars sealed.

Here she is modeling the "nose guard" she wore while they gased her. Pink of course! It smelled like bubble gum. She decided that it is a "cup" and wants us to put water in it!

The great thing, is that I left the boys at home with their assignments and sent Isabel across the street to her grandparent's house (how convenient is that!) with her assignments and when I got back at 10:30ish, they were done with everything but science and a spelling test! Yay for that! And we got to watch a really cool creation science video that I bought at the Creation Museum this summer but we had not had time to watch! They got so much done that I had the boys write a poem that was not even in our lesson plans for the day...but don't tell them that!

Here is my daughter, the human pretzel!