Concerns for Faith

-
This week has definitely been interesting for our family. I started my new work schedule on Monday, and it was so wonderful crawling into bed with Faith in the morning and gently waking her up. When she realized I was in bed with her, she said, "Mommy, are you getting me ready for school today?" 

I pretended not to know how to get her ready for school, so she proceeded telling me what to do and in what order. When I gave her a kiss goodbye she had the sweetest smile on her face.

Me and my sweet little girl

Rob was able to drive me to work since he needed the van that day. It all worked out perfectly and I was so happy to have spent the first part of the morning with Faith. Now fast forward to Thursday. Faith woke up saying she didn't want me to get her ready for school and when I tried to start the routine she became quite upset and demanded me to call the school to cancel. Where oh where was my sweet little girl?

Her fit escalated to screaming and yelling for over an hour. It was impossible to bend her into her chair as all of the high tone in her body was operating at full force. I felt really bad when I left Rob to deal with her on his own but there wasn't much more I could do.

Friday morning went better, and she only went to school for half the day. In the afternoon she had an appointment with her pediatrician and then after that she was fitted for new foot orthotics. At her doctor's appointment, Rob discussed our concerns about her fatigue from a full week of school, her extreme gassiness, and some feeding issues. He gave us a prescription to deal with her overly gassy tummy and suggested giving Faith a few afternoons off from school during the week.

Because she is constantly fighting her tone all day long trying to do things like drive her chair, work on her computer and keeping her head up, she uses much more energy than her classmates. She burns her calories faster than they are given to her. No wonder she runs out of steam at the end of the week!
 
I am really concerned about her fatigue and I'm worried about her weight as well. The sensible solution would be to try and get more calories into her, but this usually results in negative digestive consequences. Her body can so easily get thrown off and out of balance. Soon, we're going to be starting another kind of pediasure with added protein and I really hope that helps.

After her doctor's appointment, Rob took her to get new foot orthotics. She may not be getting bigger around the waistline, but she is getting bigger feet! It is sort of a long process that involves cold, gooey paste-like stuff getting wrapped around her feet and just above her ankles. 

She was very patient and was glad to see everyone at pediatric rehab again. Since starting her therapies at school, she doesn't go over there as much anymore. Afterwards, she had to go home for a quick feeding, then they came to get me after work. We made it home just in time to watch Wheel of Fortune.

I'm thankful it is the weekend so Faith can get some rest. For me, I'm going to be spending a lot of time praying for wisdom on how we can best help our daughter during this stage of her life.

Comments

Post a Comment

Most Popular Posts

My Little Vacay to Nebraska

-
Image
When one thinks vacation, they probably don't think about Nebraska, especially in November! But when I heard that a friend of mine was going be having surgery in Omaha, I began thinking about how great it would be to go down that way, especially since my sister, Tesa has lived in Lincoln for 17 years, and I have never had the chance to visit.  Lo and behold, my dad had also been talking about heading South to Texas in November to hunt wild pigs. My two respite care workers were available to look after Faith starting on a Friday morning through Tuesday evening. All I had to do was book a flight so I could get back home.  Despite all the details falling into place, I was still anxious about it. I haven't flown since Faith was a baby, so I was especially nervous about that part. I prayed about it and believed that everything would be okay.  On the morning of my departure, Faith woke up just in time and her respite care staff was able to get her dressed and take her to her day prog
Read more

Some Thoughts on World Prematurity Day

-
Image
November 17 marks World Prematurity Day . One might wonder why awareness needs to be raised about premature births. Well, I can tell you firsthand that it is a really good thing when more people are aware of the risks and complications, not to mention the emotional toll, of having a baby born too early. Having a baby born prematurely is not something most expectant parents think about until it happens to them. Most moms-to-be who first learn they are pregnant automatically think they have seven or eight months to prepare for one of the biggest days of their life. Expectant parents usually have one response when asked if they are hoping for a boy or a girl - "As long as the baby's healthy." But sadly, sometimes that's not always the case - especially if the baby is born too early. I will never forget the book I was reading shortly after finding out I was pregnant with Faith - "What to Expect When You're Expecting." It was a great resource that o
Read more

Faith Turns 21!

-
Image
 Faith's 21st birthday was on Friday the 25th and it ended up being an all-day celebration! She didn't sleep well the night before, so I was a little concerned she would run out of steam, but she just kept going! It ended up being a beautiful fall day, so I didn't even need to put a jacket on her, which is rare for the end of October.  Faith in her new birthday shirt!  This year, she was able to bring cupcakes to HIT. Last year, due to the dietary restrictions of her peers, she didn't bring any treats. This year, however, she is a new room, where they truly love their snacks! After I dropped her off, I raced around like a maniac getting her ballons, presents, and everything else ready for the surprise party we would be having at the end of the day.  Faith with some of her staff making a cupcake delivery.  When I picked her up from her day program, I informed her that some friends of mine that I worked with wanted to give her a special birthday treat. So, we made our way
Read more

Guest Post: Who Needs Sympathy?

-
Image
Guest Post by Stephen Gallup Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families. It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me. I don’t want sympathy! First of all, from the point of view of a new author hoping to promote his book, sympathy
Read more