I've decided to take a picture for each day of 2012 and blog about it. The pictures will be a reflection of what is going on in my life on that particular day. If you'd like to follow along on that journey, just click HERE
We’ve always said that when Taylor runs, she lopes like a camel. Her sister Brandy sent me the perfect video to show just how Taylor runs.
Please enjoy! I know I’ve laughed & laughed & I’m laughing now as I type this.
Sometimes it is hard having an older “child” with special needs. I will admit that there are times when I wish I could turn back the clock. Granted, they are few and far between, but if I’m honest, I do have them.
There are things that are easier when she was smaller. She still has the mind of a toddler in a 6 foot tall frame. She loves to swing, but the trend today is to take out all the old style swings and put in big play structures. I watch her struggle to figure out how to play in a world that is too small for her. It breaks my heart.
When we would go to the grocery store, so many would stop and say how cute she is. Now, it’s mostly stares of disgust because she still drools.
No, it’s not all bad. We live in a small town and shop at the same Safeway. All of the people who work there know and love Taylor. There are cashiers that tell me she lights up their day with her smile when she comes through their line. I love those people.
I’m not trying to write a whiney post but these are just things that are on my heart lately. I used to belong to an online support group for Trisomy 9p. I eventually stopped posting and left the group because there was just no connection with the other parents for me.
Taylor is one of the oldest, still living, T9p kids. She also has a lot of medical issues. She was also one of the most profoundly developmentally delayed. The parents of the younger kids didn’t want to think of their kids being as affected as Taylor. I understand that perfectly. They didn’t want to hear about seizures & cancer.
Another mother who’s daughter is Taylor’s age also left the group. She felt the same. The other big issue is school and/or programs. Taylor loved school but she can only go until she turned 21. Then they graduate them. Most of her class went on to work programs. That’s not an option for Taylor. There are really no options for the profoundly affected “kids”.
Right now, Taylor is bored. She wants so badly to DO something but because we run a business from home, it’s not possible. She does get her respite care but right now, that’s a problem. Not because of her care providers…they are awesome people. But because of the brokerage firm that handles money & paperwork. I’m switching firms so hopefully, this will resolve the problems.
I know this sounds like a complaint blog and I apologize. I just needed to get it out. I guess I just want to help other parents because I’ve been through so much in the past 22 years. I just never know if the parents want to hear what I have to say.
Eh, I definitely sound whiney now. I’ll take a cue from my happy-go-lucky child and just smile
An older picture, but one of my favorites. She’s so stinkin’ cute!
This picture is an older one, but it brought back some awesome memories and I needed that. *laughs*
Okay, so normally, I don’t post about myself unless it relates to Taylor, but I suppose I need to change that up a little. What affects me, affects her.
So, last week I spent some time in the hospital for pneumonia. Needless to say, I’m still feeling like crap but trying to do that at home. I had to make a repeat visit to the ER on Friday for IV steroids, but got to come home.
Is it just me or is it all us special needs moms…I tend to take my health way less seriously than I do Taylor’s and that isn’t really the right way to be. If I’m not healthy, I can’t take care of her but sometimes that just doesn’t translate into practicality. Please tell me I’m not the only one! *laughs*
Taylor went and spent some time with her care providers while I was inpatient. She enjoyed that. They have a dog. See…Taylor is the ‘dog whisperer”.
This is 1 of the pics she sent via text to my phone while I was in the hospital.
Apparently Taylor doesn’t like to sleep at their house. She’s too afraid of missing something. She is up and down all night. When she comes home, she ends up taking a several hour nap and/or going to bed at 7pm then waking up around 10am. Either way, it works for us and they don’t seem to mind. I love these people!!!
As a side note, I hate, hate, hate the brokerage service that we have to deal with for Taylor to get respite. They are being *&^%$heads. But I’m changing firms, so hopefully, it will work out.
Taylor got a new haircut yesterday. I think she looks cute. Also, no more struggling with her to put it in a ponytail first thing in the morning so she doesn’t have food in it. *yuck*
I realize that it’s a little odd to take pictures of a new haircut while the person is sitting in the bathroom floor. However, this is Taylor’s “office”. Every day, she takes her work equipment, aka bucket of tub toys & mp3 player, and heads off to work.
She then proceeds to throw said toys over the shower curtain and into the tub. That is the sound we get to hear all day…plastic toys hitting and bouncing all around the cast iron tub. Keep in mind the fact that this is a 1 bathroom house. So anytime we need to use the bathroom, we have to wait while she gathers up her work materials to take with her. You better not wait until you really have to go in this house.
Taylor takes her “work” very seriously.
It wouldn’t be a good post, if I didn’t end it with a smiling Taylor picture.
Taylor last summer. A time out chair big enough for her *laughs*
Since Taylor’s sister got married and had to move, we’ve been without respite care. It’s hard to find someone you trust completely to keep your child overnight.
Luckily, we were able to find those people. One of the nurses at the infusion center Taylor has been going to since 2007 offered to do it. She loves Taylor & Taylor loves her. She thought it would be good for her kids to be exposed to someone like Taylor.
So, for the past several months, Taylor has been stuck at home day in and day out. Since we run a 9 to 5 business from our home, it’s hard for me to get out and do things with her. So she has been bored and boy can you tell.
She would just meander through the house with her bucket of tub toys…trying to decide if she wanted to go throw them over the shower curtain and into the tub ( a favorite loud past time) or take her mp3 player out and lay on the swing. Another loud past time if you have ever heard Taylor sing. Think 100 cats being run over by a car simultaneously.
She would also make 500 trips to the bathroom every night to make sure nothing fun was going on in the evening without her. Anyway, last week, all the respite paperwork was done and the family came to pick Taylor up for 3days/2 nights. I wanted to run around the house yelling “free at last, free at last, thank God Almighty, I’m free at last!!!!” (Didn’t…but wanted to. Taylor probably would have done that if she could talk)
Apparently she had a blast. She attached herself to their 10 year old daughter Ally, who enjoyed the attention and gave one of their dogs more love than it probably ever wanted. She came back a whole new girl. She walked in the door, had a snack, then took a 3 hour nap. Got up to eat dinner and then went back to bed until 10am the next morning.
She has been happy and good every day since then. No getting up a thousand times a night either. That little break from home did that child wonders. People should never underestimate the awesomeness of respite…for both the parents & the child.
So, this is the “infamous” foot that started us down the road to diagnosing the CML. We’ve been through 16 days of IV antibiotics, bone scans, ultrasounds, dozens of x-rays, & several different doctor specialties telling us they didn’t know what it was.
Everyone agreed that this had nothing to do with the CML. So we were just treating her pain when she had some. This morning, she woke up in a lot of pain. I tried the Ibuprofen first…nothing. I called the doctor and then gave her stronger pain meds and she became more comfortable but everyone felt she needed to be seen.
However, Taylor’s doctor isn’t in on Fridays. Also the only appointment they had was with the NP. Now I love this office. All the nurses love Taylor so I know they have her best interest at heart. The nurse on the phone said, “Dawn, I don’t want to offend you, but it really wouldn’t be fair to have the NP see Taylor because she is just too complex and she’ll scare the crap out of the NP”.
Okay, I’m so not offended by that. I totally get it and I just had to laugh. To me, that sentence was funny. Of course, that could just be twisted sense of humor.
So off we go to the Urgent Care because they know Taylor just as well. (I used to have this secret fear of being labeled a drug-seeker because we ended up in the Urgent Care so much.) The doctor actually laughed at me when I told him that.
Anyway…I’ll stop rambling. I’ve written all of that to just say this. Her last x-ray in May showed no bone abnormality. Today the doctor said that the leukemia can weaken bone so he wanted an x-ray. Lo and behold, she has a slight hairline fracture of the ankle.
Seriously? The treatment is an ankle splint that she does not want to leave on. We don’t want to put her in a cast because then she would lose her sacred bath time. That girl loves her baths.
I’m not upset right now but I’m sure at some point it’s going to hit me and I’m going to be upset that she has to deal with all of this. I will end this entry with a happy Taylor picture.
Taylor at her sister’s house (before she moved). She is singing this song from Barney.
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