Tuesday, April 28, 2009

A new diagnosis to throw into the mix

Last week, my Peanut had bladder and renal ultrasounds done. We do these annually, because of her neurogenic bladder. She does urinate on her own, but she never completely empties her bladder. She was getting repeat UTI's for a long time, so we did a VCUG. That was in February 2007, and we started catheterizing her then. We put a straight cath in at bedtime, tape it to her leg, thread it through a hole we cut in a diaper, and let it drain into a pull-up. She has not had a single UTI since we started cath'ing her.

Unfortunately, the ultrasounds last week showed hydronephrosis in both kidneys. Now I have to catheterize her every 6 hours. We go to the urologist in the middle of May. He is going to order a repeat ultrasound in a month or two, to see if the 6 hour cath'ing helps the hydronephrosis. If not, we will move it up to every 4 hours, and wait a few months and ultrasound again.

The part that worries the urologist is that she has never shown signs of hydronephrosis before. Her kidneys have always looked fine. This scares me as well! Is this something that gets worse and worse, or stays the same? Does anyone else deal with this with their kiddo??

How in the world am I going to catheterize her every 6 hours? It takes two adults to do it. One to hold her and one to cath her. We do it at night when I either have a nurse or my husband to help me. How in the WORLD am I going to do it during the days, when I have no nurse???

Monday, April 27, 2009

Support is amazing

For about a year and a half, I ran a local parent support group. It was for parents with special needs children. Not just cerebral palsy, or autism, or down syndrome, but ANY special needs. It was an amazing and overwhelming group of people.

The location that we were using moved farther from my home however, which made it really inconvenient. We decided to put the group on hold for a while.

There are a core group of four of us moms who still get together at least once a month for dinner and drinks. This month I decided that instead of going out to eat, I would make us all dinner.

We are having chicken enchiladas, spanish rice, pinto beans, and lemon bars for dessert. I bought some Pete's Wicked Strawberry Blonde beer.

I can't wait to with with my "CP Mommas" and just relax. All four of our children are diagnosed with cerebral palsy. This group is the only real life group of people I know who "get it". I am excited!! I just love these women. :)

Friday, April 24, 2009

I told you it was bad.

Stupid Dogs

You know, being the mom of a special needs child isn't very stressful. It doesn't involve much driving around town, many appointments, hours of therapy, extra time doing meds/tube feeds/catheterizing. None of that.

Right? Obviously not. So the dogs in this house have decided to start throwing in a little hoopla to stir up our otherwise boring, blah, and drab life.

One dog is too old to care. She just watches the other two trouble makers. The second dog DIGS all of a sudden. Our backyard is full of pits. Including two which she dug UNDER THE FENCE to the neighbors yard. These holes allowed the third dog, the boston terrier from hell, to go into said neighbors yard. The first time she came right back when I realized it and called her, and bricked up the hole. It wasn't TOO big of a deal.

But not this time. This time, she came back through the fence. I piled up bricks in this (second) hole. I went to Petco and bought "No Dig" spray that they swear will work, even though I am sure I just wasted ten dollars. I came home, sprayed it all over the area, and started helping Monkey with his homework.

Until we realized that dog number two, the digger, was missing. I climbed up on the swing set to look over the fence and sure enough, she was in the neighbor's yard. I unpiled all the bricks and tried to get her to come back through the hole. Which of course was too SMALL on the neighbor's side, and she couldn't fit back through it. I climbed back on the swing set to look and see what to do, and realized that the neighbor's desert tortoise is on it's back. On it's BACK. You know, the side they're NOT supposed to be on. The side that they can DIE from being on.

I am at this point in a panic. The neighbors aren't home, and with all my arthritis and such, there is no way I can climb the damn fence. I called friends, until I found one whose husband was home.

He rushed over, climbed the fence, and righted the tortoise. Which hissed at him and tried to bite him. Not very appreciative!

He couldn't get the dog back through the hole, it was simply too small. Who knows how she got through it the first time. So now he's trying to lift a 40 pound dog OVER the 6 foot tall fence. I pulled the kid's garden bench to it and stood on it. He managed to heft the beast - I mean dog - over to me. Then he climbed back over.

Drama over, right?

Until I got home today. And the smaller dog - the one that has bitten and popped every ball we owned, eaten every plastic pot in my backyard, and loves to shred cardboard - is looking mighty guilty. I call her name, she runs out back.

I start wandering around looking for what she did.

She shredded the arm of my less-than-two-years-old love seat. It's SHREDDED. There is white cotton fluff EVERYWHERE.


Dear Monkey is on a camping trip with my brother. He loves this dog more thanhe loves me I think. If we get rid of her, he will be seriously heartbroken. What the hell do I do? My husband is ready to kill me. We do have a warranty on the couch and loveseat that they said even covers pet damage, but I have to find it. And deal with a warranty company and repair company.

This stupid STUPID dog. Do I break my son's heart? He sleeps with this dog in his bed. He watches TV with this dog in his lap. When he left for camping this afternoon he said "I'll miss you Mom, but not as much as I'll miss Hannah". Hannah A.K.A. Stupid Dog.

Who decided we should keep them as pets in the first place??????? We should eat them for dinner and be done with it.

Just kidding.

Sort of.

Tuesday, April 21, 2009

Not much going on ... that's a good thing!

We've had some busy days but nothing major. Just normal busy. It's nice that way! :)

Peanut had her annual bladder and renal ultrasound on Monday morning. Hopefully the results will show nothing new, and we will continue on as we have been. We have been cath'ing her for over a year now, and she hasn't had a single UTI since we started! What a change from the monthly infections she had before that. Cross your fingers for good results, but I am pretty positive they'll be fine. :)

After the ultrasound we walked across the street to the endocrine clinic and had her blood work drawn. They are testing growth hormones, cortisol, thyroid, and I don't remember what else. All things to help determine why she isn't growing in height hopefully.

Speaking of her growth, I have come to a decision about the growth hormones. Unless her labs show that her levels are low, I am not willing to put her on them. The endocrinologist recommended a small dose to help with her muscle strength, even if her levels are normal. From talking to her PT, I don't agree with this. Her muscle strength is not bad, it's her muscle control that's the bigger problem. When she wants to stand up, she can, with minimal support. But sometimes her body seems to betray her, and she can't get the muscles to do what she wants them to. This is not a strength issue, it's a control issue. So I am not willing to put her on artificial hormones, unless her levels truly are low.

Her new AFO's came in finally, we went to get them yesterday. One of hers broke in half over a month ago, so she's been struggling to walk without them for a while now. Well, we tried the new ones on at the office and - they don't fit at all! They were definately not made well. So they are getting sent back, and we are starting fresh. This means another 3-4 weeks without AFO's, unfortunately. :(

In other issues, life is just busy lately! Tonite I have a PTO meeting for Monkey's school. This year I am the "Donations Coordinator". As for tonite, I will be the President for next year. It's a lot of fun, but a lot of work! I have been the president's side kick all year, so at least I will know what I am doing. Tomorrow night we have BINGO night at school, which I am co-chairing. It'll be fun!

I am in the midst of dying my hair, it needs to sit 5 more minutes. I better go get ready to shower it out!

Wednesday, April 15, 2009

Wordless Wednesday

Okay, so a few words. ;) This was taken when my Peanut was 2 months old. These were preemie clothes, and they were too big on her. I just love this picture!!

Tuesday, April 14, 2009

Endocrine appt, growth update

We were supposed to see the endocrinologist in January for our annual appointment, but our Dr left the practice. We had to wait until yesterday to get in with a new doctor, but it was a good appointment. The new doctor was really great. Good besides manner, answered all my questions, talked directly to Peanut. Yay for that!

Her height is 95 cm, or 37.4 inches. January of 2008 she was 90 cm, or 35.4 inches. In 15 months, she only grew 2 inches. This is better than none, but is not great! Her weight was 13.39 kg, or 29.5 pounds. This is almost exactly the same as last year. Unfortunately it's bad down from two months ago, when she was 31 pounds. I wonder if we will EVER stop worrying about her growth!

We are retesting all of her hormones - cortisol, thyroid, etc. They were normal last time, but she said we need to check them annually. If anything is low, we will talk about replacing it. She told me to talk to our PT's about Peanut and the possibility of growth hormones. She said even if her levels are normal, she could get a tiny dose. This wouldn't be enough to make her grow like crazy, but would help give her more muscle strength. I've never heard of this before, so it gives me something to research.

In the end, nothing new! LOL Our peanut remains little and petite, and as we like to say, portable! :)

Monday, April 13, 2009

Happy Spring!

We have a very casual, laid-back Easter Sunday. Hurray for that! Monkey of course did not sleep in, we made him wait until 6:00am before we all got up. We had pancakes for breakfast and then we went to the local zoo. It was a great day, and a great end to Spring Break!

Friday, April 10, 2009

Happy Friday!

We rented Bedtime Stories last night, and I snuggled on the couch and watched it with Monkey. It was fun and cute! :)

Today I am lucky enough to be taking a whole gaggle of 8 year olds to see the Hannah Montana movie. I know you're jealous! ;)

Thursday, April 9, 2009

That was a disaster.

We are back on Neurontin. My Peanut was up all night screaming for numerous nights. She was crying in pain when we were catheterizing her, and she never does that. She always fights it, but it doesn't normally hurt her. She was so grouchy during the day.
Yesterday I was bolusing her morning baby food in and halfway through she started gagging and retching. Within literally seconds, all the food I had just bolused in her g-tube was thrown up. Explain that to me, when they insist her fundo is intact. (we spit up constantly, the food that was g-tubed in. Obviously refluxing)
So as of last night she is back on Neurontin. She slept all night, and has been her normally cheery self this morning. I am bit disappointed that the wean didn't work, but even more so I am thankful that we have this medication that clearly helps our Princess feel good. :)

Tuesday, April 7, 2009

Trying a med wean ....

My peanut is on so many medications, and most of them are for her GI problems. I hate giving her so many meds each day, some of them 2 and 3 times a day! I talked with the GI and he wanted me to try and wean her of Neurontin. It's a seizure med, but it's used to help with neuropathy. They have determined that is the reason for her screaming fits in the past, whenever she was fed or was pooping. The stomach and intestines were interpreting any and all feelings as pain.

Now that we have isolated the Beneprotein (whey) and soy as intolerances, he wants me to try her off Neurontin. He thinks perhaps those things were causing the problems.

So ... we're on day 2 of no Neurontin. The first night she was up screaming for a bit, but she does that occasionally. So we are not counting it as a problem. Last night she slept her normal amount.

We'll see how she does. Cross your fingers, I'd love to take even this one medication off her list!

Wednesday, April 1, 2009

Little Heroes Photo Shoot!

I am so excited to share our family photos from our Little Heroes photo shoot! Our photographer, Tiffany, was amazing! Our Peanut takes a while to warm up to people, and Tiffany was great with her. By the end of the photo shoot, she had Peanut belly laughing! It was a lot of fun, and I am in love with the photos!!!

THANK YOU TIFFANY!! You cannot imagine how great this was for us. :)