A Day In The Life Of Annabel

Therapy Thursday... at least that is what we refer to it as. Tuesdays and Thursdays are Annabel's days of therapy outside of school. On the T days, Annabel starts the mid-morning off with back to back therapies. At 11:30am, begins her occupational therapy. As the pictures show, her therapy begins with swinging on the platform for a few minutes. When Annabel really enjoys the swing she will talk and laugh and giggle... it's too funny. After that, she got to play with vibrating toys to help work on her tactile defensive nature with her hands. She also wrote her name a couple of times on paper with a vibrating pen. Finally to round up her session, she worked on sitting straight up and using her hands to play with toys in front of her. She has really come a long way since she first started therapy, but since she has been sick it has set her back physically.
At noon comes speech therapy to work on her eating and mouth movements. Here her therapist attaches stem to her cheeks and throat. This stimulates the muscles to help make them stronger. It also helps her to develop the proper technique to swallow and chew.
The third therapy before her lunch break is physical therapy. During this time, Annabel works on her standing and sitting. We are trying to build muscle strength so that hopefully one day she can walk. Her surgery and being in the hospital have really set her back but hopefully starting next week she will be back in the stander and working hard again. Once physical therapy is finished, we go have lunch and head over to her grandma's house for a nap.
To finish the day off, Annabel goes to speech therapy in the afternoon. Here she works on her motor development skills. She uses her hands to pull and pick up toys. She also listens to music while working on learning animals and objects.
By the time we get home Annabel is ready to sit back and relax on the couch while watching some cartoons. Hope everyone enjoys this little insight on what all therapies that she receives during the week. Her urine has been back and forth lately. One day it is crystal clear and the next it is murky. She hasn't shown any outward signs of feeling sick so hopefully this is a good thing. On Tuesday she didn't feel very good, but since then she has been all smiles. I have begun to use her feeding machine as an IV during the night to make sure that she takes in enough fluids. I try to continue to pump water and bottles into her during the night. During the day, she gets water and cranberry juice through her button and eats all her meals by mouth. Thanks everyone for all the help and the support each and every day!! God bless.

A better day...

Just a brief note to say that she had a better day today. I fed her every two hours during the night through her pump with liquids (lots of water). Also today we have given her more liquids than usual. Her urine is not clear but looks better than yesterday so we will continue this same routine tonight. She is her happy self and eating much better today. God is so good. I realize her life could be so much worse, and I am grateful for His goodness! Thanks to all who call and write and pray for this precious child. I think of all of you often and so happy for the friend I know and my new friends through this blog.

Pure frustration...

There are no words to explain how I felt this morning when I cathed Annabel. Yesterday was the first day without antibiotics. When she went to bed her urine was clear. This morning her urine looks like sewer water. It was very murky and brown. I truly could not believe my eyes. She did cry out several times during the night. She has been doing that and I was not sure if it was her tube feedings making her uncomfortable, so last night I discontinued them. I did place a call to Dr. Roth (urologist) at Texas Children's Hospital but have not heard back. I am sure he will not hesitate to express his frustration also. I was so looking forward to being off the antibiotics so that her tummy could possibly return to normal. I really felt with the IV antibiotics, the antibiotic wash 2 times daily of her bladder, then the oral antibiotic we would be infection free for a longer period of time.
She did not make her full day of therapy today. She was super tired today and we just brought her home for a long nap. Sorry, but that is a lot of whinning. I want to thank my daughter, Tara, who took her to her therapy and babysat with her today so I could go to Houston. She is my right hand and I don't know what I would do if I could not just call upon her anytime. She always is willing to reschedule whatever she has to take care of Annabel.

Feeling better...

Where did the weekend go??? We probably didn't get much accomplished, but we sure are relaxed. Today was Annabel's last day on the antibiotic. Hopefully tomorrow she will resume her normal diet. She still has some congestion, but she is surely feeling better. She is such a happy girl. She is still waking during the night several times, but she puts herself right back to sleep. We are hoping to try school for a few hours this week. Tonight her big brother, Tyler came by and finished the evening off with storytime.