Wednesday, October 12, 2011

Day 12 - One of those days

Some days, though they are very very few and far between, Down syndrome makes me crazy. Yesterday morning started off with me waking Ella up and her being soaked from her armpits to her knees. Soaked with pee. This has been happening more and more lately. After that was cleaned up our morning routine of me chasing her around the house with a spoonful of her medicine mixed with chocolate syrup while goes between covering her mouth with both hands and screaming "I HATE IT MEDICINE!" I get her dressed, do her hair and then Chris takes her to school.

I go to pick her up at school and the special ed teacher says "Ella is having an day." She wasn't answering questions correctly and needed a lot of supervision. (She has done great this whole school year, then yesterday I had to carry her out of the school screaming..) Then we run home and get ready for dance class, which she has been so excited about all week, even practicing her ballet moves. We talk on the way over there about listening to the teacher, staying with the other girls, etc....with her in agreement, "ok mommy!" "yes mommy, I will!" We get there and Ella goes into the class with all the other little girls, and about 2 minutes later the teacher comes out and asks me to come in the class and sit. Great. Well, Miss Ella was not behaving at all. Not at all. She is running around the room, not listening. I grab her and have a little pep talk about doing what the teacher says, and look at those girls all listening and having fun. "Ok mommy!" Only to be a little monster again. Finally I had had enough, I pick her up and we leave dance class 15 minutes early, she is screaming that she wants to stay. She gets so mad in the parking lot she rips her glasses off and throws them down on the ground. We get to the car and I start to buckle her in and low and behold she has peed through yet another diaper, one that has been on just 30 minutes. Sigh. My blood is boiling. I buckle her in to her car seat and tell her just how disappointed I am in her behavior. She says " I sorry mommy," and sticks her thumb in her mouth. We go home and I throw her in the shower, after all she has peed all over herself twice so far. I have had time to calm down. She knows I am angry. So I put on her jammies, even though it is only 1:45 in the afternoon, and she cuddles in my lap. It is really really hard to stay angry at a face like this....

I blame it on Down syndrome, it's just easier to blame that instead of Ella. Maybe that is wrong of me? The complete lack of reasoning with this child at times leaves me furious. Ella's dance class is made up of 6 girls. 5 of them are 3 years old and Ella is 5. They were all behaving, except for Ella. I know I should maybe cut her some slack, but I can't. I have big expectations for this little girl.

I try to think about how her meds could be effecting her. I know her little body is undergoing a lot of changes right now. My mother and I have this theory. For the past several months Ella had been doing awesome. Her behavior was better than ever. Her speech was phenomenal. She was growing like a weed. She was doing AWESOME in school, being a leader, participating in everything without being prompted. And then we found out she was hyperthyroid (Graves Disease,) so my mother and I were like "what if this kind of pepped Ella up?" No, surely this was all just a coincidence right? One of the symptoms of Graves are inability to pay attention and focus. In prior school years Ella has needed to be prompted to participate and was happy to watch her peers. She was more lethargic, needing 12 hours of sleep at night and then taking a nap for a couple of hours and having to be woken up from that. Now that her thyroid levels are normalizing some of those old behaviors are coming back. Just a thought. I know it isn't safe to remain hyperthyroid but wouldn't that be interesting if Ella does so much better when she is in that range??

Then there is the potty training stuff. UGH! We were having some issues which I discussed with the pediatrician at her well child check. Stuff like Ella would go pee in the potty and literally 5 to 10 minutes later she would be soaking we again. She never really initiates to go pee in the potty and yet she has been mostly poop trained since she was 3. Sometimes she really strains to go pee. Anyhow the pediatrician thought it would be a good idea for us to see the urologist. The urologist office called and told the pediatrician's office that we first needed to have an ultrasound done on Ella's kidneys and bladder. The results of that ultrasound say that Ella has a dilated left kidney and a "small bladder volume." It was interesting at the ultrasound because they took measurements of her bladder when it was full, then we had to go to the bathroom and Ella peed in the toilet, then we came back to measure her empty bladder, only her bladder had barely emptied at all. I thought that was interesting, may have something to do with her being 10 minutes after she has already gone? We couldn't get in to see the urologist until November 15th, so of course me being me have in the back of my head what if she can never be potty trained??

I just feel like for the past year my kid has been falling apart medically. First it was her eyes, needing glasses, and then surgery on both eyes, and now in bifocals. Then it was her ears, failing hearing tests (though thankfully that has all worked itself out.) Then there was the weird ankle thing where Ella wouldn't walk for a couple of days, followed closely by the leukemia scare (which thank God it turned out she did not have, but we never figured out her injury.) Now we are dealing with Graves Disease and some bathroom problem. I guess when my child was born with Ds and we went to a million doctors and slowly but surely things got checked out and cleared, I figured we were in the clear. I realize that things could be so much worse, I really do, but now I'm stuck in the mind set that if all this stuff is going on that we didn't really know about what's next??

Okay. Sorry that was a bummer of a post, but this is my place to vent. The truth is I love my girl and I am extremely proud of her, she is amazing and such an inspiration. But dammit she needs a break right now, and frankly so does my brain!


Alaina and Kyle said...

It must have been in the water yesterday. My post was crappy too!! At least we have each other to vent to!! Keep your head up. Ella has come such a long ways and it can only go up from here!

Becca said...

Samantha has been doing some similar stuff this week, with *me* at least. Not listening, throwing fits, then making me melt and feel super-guilty because I'd just yelled at her for not listening, when she throws her arms around my neck and says, "I love you, Mommy." Arrrrrgh.

I'm so sorry potty training has been so tough, but I bet once they figure out what's going on with her bladder you'll be able to do something about it! Hang in there, Kacey! And please give that beautiful little twin of Sammi's a big smooch from us, okay?

Runningmama said...

We all have days like this and hopefully soon the Dr's will figure things out. I would definately mention your theory about the hyperthyroidism, our kiddos have proven that their bodies don't always work the way "typical" bodies work and what looks like hyperthyroidism may be Ella's normal???

April said...

I am so glad that I read this! My daughter (with DS) will be 4 next month. We are having similar issues with potty training. She has the poop down, but pee is a different story. During my whole pregnancy and until she was about 8 months old, she had dilated kidneys. Now I am wondering if this is also an issue for us. I need to look into this.

We are having the behavior issues here too :(

Sweet Pea's Mommy said...

We all have bad days so please don't feel bad about having one! Ella and you both certainly deserve a break and to have something come easy, but sometimes life is just like that. Stinks huh!?!? Ella is just adorable and I love reading about what she is up to so thank you for sharing both the good and the bad. HUGS!

Addie Talley, Photographer said...

We just adopted a little 6 year old boy with DS from Hong Kong and he has been home for 10 months now... he was not potty trained at all... still istn poop trained, but we have got the pee down.

When he started school this year, he decided to be a naughty boy and go to the bathroom, but not totally empty his bladder - he would pee alot, but not completely empty, so 10 minutes after going to the bathroom, he would have an "accident"... we had to really get the teachers in on this, as he has a bad kidney so its important that he completely empties his bladder or it can cause infections..

to know he has completely emptied, we have to see him really strain and push it all out... he is very lazy and will go enough to where it isnt hurting him anymore... is it possible that Ella is doing the same thing? It has now become easier for Wallace to go b/c he has started using those muscles more... often we have to stand there and tell him about 5-6 times to keep going...

Maybe Ella has not used those muscles enough to know that she really has to push?

hope this isnt offensive... i would have never thought of it if we werent having to go through it right now as well

oh, my password for this post is peedosce - thought it was funny to start with peed

Debbie said...

Hey Kacey.....

I totally understand your frustrations......

JEB is 11 and will pee in the potty, when you take him but not on his own and is NOT poop trained. In fact, he will sit for hrs. but still not poop in the potty. He also has done some of that not fully going pee in the mornings, when I KNOW he needs to go and his night pullup is totally dry. Then he gets to school and won't go and won't go, then BAM!!! Has this major accident and goes everywhere! Like his bladder exploded!!

Thankfully, he hasn't done that so much anymore, but it's very frustrating when he's doing it. He also screams and fusses every single morning about washing his face, combing his hair and brushing his teeth. You would think I was killing him!!

There are many other things that make me just want to scream, but all in all I must remember that GOD blessed me with him and chose me to be his Mom.....and for that I am grateful.

It's so hard though. Keep up the good, but hard work!!

She's soooooo cute!!!