So today is April 30. I should be on Day 30. But I'm on Day 14. Just about 50 percent behind schedule. That about sums up my life. ;) For the few of you who have continued to read this year, I REALLY appreciate it! And I am sorry that it has been so sporadic this month. Like I said a few days ago, I will be continuing into May, until Vicki's birthday to complete the 30 days...
Yesterday Vicki had 2 different doctor's appointments. Sometimes we try to double up on things if we can so that my husband doesn't have to take as much time off of work. And sometimes I feel so useless. I wish I could take Vicki to her appointments by myself or with one of her aides.. But I can't. No one else can help her as much as her Daddy does during these appointments. His strength, both physical and emotional, is something I marvel at. The bond that he and Vicki share is an unbelievable one to watch and I feel so lucky and so thankful that all of my kiddos have such an involved and amazing Daddy in their lives. I just wish I could do more. He works. I don't. And I have to ask him to take work off to help me. Anyway... Sorry for diverting... I've just been thinking a lot about how lucky I am to have him. Sappy girl moment. ;)
Her endocrinology appointment went very well. Vicki is just shy of 5'5" now! And she has lost weight since last year. Her doctor was super pleased with her BMI. We are getting ready to schedule another sedated MRI; they have to look at a small mass that was next to her pituitary gland to make sure it hasn't grown from 2 years ago. The doctor is hopeful that it will remain about the same. I am not looking forward to the sedated MRI. I don't like seeing any of my children struggle as they wake up from sedation. It has always scared me.
Someone asked me how her doctors appointments went yesterday and my first response was... "it was hard." And I get mad at myself for generalizing the whole day as 'hard'. It wasn't all hard, in fact, some of it was downright amazing... yet... hard is the first word that comes to my mind. Why? When I look at percentages throughout the day... the 'hard' part was maybe about (ok... I have no idea how to do percents... I am not a math person) so I will say a low percentage of the whole day. Why is that the what I remember and focus on the most? :(
Why don't I look at how far she has come when she goes to the doctor? (With my husband and the routine that we have established with Vicki) she has done very well the last few visits. My nerves get the best of me and the what ifs? get the best of me. But Vicki... Vicki is doing darn good. Like at the endocrinologist's office... she took her shoes off when she was instructed, she stood on the scale and got her height measured and got her blood pressure taken. She sat so still and watched it. Then she let the doctor listen to her heart and even though she refused to lay down on the table, she let the doctor look at her tummy and she leaned back and stretched her arms over her head. All amazing things. Things she never would have done a few years ago.
But what did I take away from yesterday? The EEG prep. It was hard. And when I say hard I mean there is absolutely no way we could have gotten an EEG done without my husband. None. Before I get to that though, let me tell you something kind of cute. Sometimes I forget that Vicki is first and foremost a young girl. Not a young girl with autism. Just a young girl... An 11...almost 12 year old... who wants to do what all other kids her age do. Try to get out of things and try to manipulate situations. And I celebrate this so much! We were walking back to the EEG room and the nurse asked Vicki if she had to go to the bathroom. Vicki yelled, 'no potty! no potty!' And she stood still and we couldn't get her to budge... she would not walk into the bathroom. I knew she didn't have to go. But she was supposed to 'try.' Well, the nurse looked at her and said, 'Thanks ok. We can just go back to the room.' So we walked into the room and she asked Vicki to lay down on the bed. Vicki saw the bed and all of the wires and she looked at us and said, "I need to go potty. I need to go potty.' I knew better. So did the nurse. But she said we better go anyway. So I took Vicki to the bathroom.She walked willingly this time. Ahhh... it was the age old buying time trick. (Secretly I am laughing. Good one Vic!)
Anyway, we walked back into the room and we had the task of getting her to lay down on the bed. Again, thank goodness for my husband. I will skip the 'hard' part... and just say that I can't believe my husband stayed in the awkward position he had to be in to make sure Vicki was laying down flat.... for over an hour. He never stopped talking to Vicki and soothing her. I know he wasn't comfortable but he never once complained. Vicki held onto him for dear life. The hardest part for me is seeing the anxiety manifest so physically for Vicki. Her face gets beet red, I can feel her heart beating so fast as I lay my hands on her to try to soothe her too. The yells that come from Vicki are like no yells I hear any other time, and the worst... the look of absolute fear, no, terror, in her eyes.
We talk her through it. As the nurse was putting the wires on her head I would tell Vicki what color the wire was and I would talk through fruits and veggies that were the same color as the wire. The best part is when Vicki slows her breathing down and actually volunteers an answer. And then another. And another. And then we put her favorite DVD into the portable DVD player we brought. Thank goodness for old school Popeye. She absolutely loves the cartoon classics DVD. She giggles and smiles and even though she did not want to lay flat, she was calmer. She even liked blowing on the windmill for part of the test, and she thought the strobe lights were really funny, especially when they flashed super fast.
Anyway... looking back on yesterday now... I guess it wasn't terrible. We got through both appointments and she laid still enough for them to get what they needed on the EEG. I was ironing today and sometimes I turn our TV on when I iron. The movie 'Oh Brother. Where Art Thou?' was on. And the song came on, 'Keep on the sunny side. Always on the sunny side. Keep on the sunny side of life. It will help us every day, It will brighten up our way, If we keep on the sunny side of life...."
I guess I really needed to hear that today. The storms will recede and the sun will shine. We just need to keep on.
xoxo
No comments:
Post a Comment