And here we are in 2010….life is……challenging, emotional, and exhausting! You’re probably confused by that. Most people look at my posts or see us in person, and assume we are out of the woods with Macy. They assume we are living a completely “normal” life. Don’t get me wrong, we currently aren’t facing hospitalizations, weekly blood tests, or open heart surgeries, but we have learned that life with Macy will always be challenging, emotional, and exhausting.
I know I don’t always post about it, but Macy is sick about 1-2 times a month. Coughing, breathing issues, congestion, and vomiting fill our lives. We start up breathing treatments 3 times a day, we make calls and visits to our pediatrician, and we try new medicines and treatments trying to find a way to cure this constant illness. Did you know that Macy has to keep switching back and forth between 2 antibiotics because those are the only ones she can take due to her muscle disease? I am convinced they aren’t even working anymore, since she has been on them so often. When Macy is sick, she often coughs so hard she vomits.
A small amount of congestion can make her gag on her food and vomit. We are an “order in” family when she is sick, although we desperately want to get out of the house. Did you know the first time we went out to dinner with Macy was in 2008? She was almost 3. Our friends basically made us! Did you know we have to carry a cup and plastic bag along with us when we go out to eat just in case Macy vomits?
Macy can vomit twice, and her blood sugar levels can drop down into the 20s and 30s. We thought she had outgrown this, she proved us wrong last month. I had a lethargic little girl lying in my arms, I was seconds away from calling 9-1-1. It once again happened this morning….she was reading 43 on her glucose monitor after 1 vomit.
It’s funny, at one time we were on 6- 7 medications at once, we are now down to 4! Yay for us making progress, but we still have to prepare meds 2 times a day! There will always be meds, and times to come when we are back to more than 4. So, we are will never be out of the woods….we are still chopping through the brush and trees, and building our house in there. Trust me, I am thankful for all of these accomplishments she has made individually and we have made as a family, but life is still challenging. I guess I have to look back and say, look how far we’ve come!
If you guessed why this post has come about…YES, Macy is sick once again! I am sick of IT!!! I am sick of her coughing so hard that she vomits, I am sick of a cough starting when she just runs to the bathroom, I am sick of having to hear her say, “I can’t run on the playground today, can I Mommy?” My heart breaks for her. She is healthy for 2 weeks, and then sick again! This little girl has had to overcome some huge obstacles in her life, and she has many more to overcome in the future like more open heart surgeries and a possible liver transplant. Why does she also have to face daily illnesses???
We just got another diagnosis yesterday. In addition to being back on antibiotics, they believe Macy may have asthma. I have been wondering for some time now if that might be the case. We have started her on a daily inhaler (2 times a day). She didn’t ask too many questions about it, she didn’t fight to take it, she just simply knows it will make her better. Bless her SPECIAL heart! Please continue to pray for our little girl and her daily challenges!!!
No comments:
Post a Comment