Well...we have come to the end of our first full day...let me start by saying...Emma and I desperately miss our CHCC family. We made some amazing friendships there that really helped get us through the long days and nights. Being is a new hospital is a huge adjustment; however, I am surprised at how smooth things have actually been. The staff here has been wonderful and very helpful. On Monday, we meet Emma’s new GI and ENT doctors…they were both very nice, but her GI doctor brought a few new things to the table that were over looked by the doctors at CHCC. Emma’s new GI doctor is extremely concerned about her lack of growth when it comes to her height. She is currently sitting in the 2nd percentile. So, Emma will now be followed by an Endocrinologist. What is an Endocrinologist?? Great question… Endocrinologists are specially trained doctors who diagnose diseases related to the glands. The glands in a person’s body release hormones. Endocrinologists treat people who suffer from hormonal imbalances. Emma’s doctor feels she may have a hormone deficiency. So, we will be getting to the bottom of our little lady. Emma is also dealing with a pancreas deficiency. This is normal in cystic fibrosis, however, we have found that Emma’s pancreas is functioning at such low levels, it is not even registering on the test! I was completely stunned by this new challenge. He doctors are running tons of test to find out exactly why her pancreas isn’t functioning properly. As for ENT…Emma has a CT scan done of her sinuses and we found that she is compacted and inflamed. So we are waiting to hear from the doctor on if they want to try an added medicine during saline rinses or if he thinks surgery would be more beneficial. Moving onto her lungs…Emma’s CT scan of her lungs was a little harder to take. It showed that Emma has moderate lung damage. This is PERMANENT! It is caused from all of her lung infections. This is very concerning and we will strive to keep her as healthy as possible, however, it is impossible to prevent lung infections in CF…so this will continue to decline. Cystic Fibrosis is a progressive terminal illness…so often, I hear…”It’s amazing Emma is so sick, because she looks so healthy.” Yes, on the outside, Emma looks amazing! She is a healthy looking child…but on the inside it’s a completely different story. Emma’s body is showing more progression than we would have ever anticipated. What does this mean?? It means that we will keep hoping and praying for a cure and in the mean time…we will work hard to keep her healthy as long as we can!! With all that being said…The Bible tells us in Matthew 6:34, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Some days, heck, most days, that’s very tough, but especially when you have a sick child. I am trying to find my strength is the fact that God knew the number of our days before we were even born…He knows how many hairs are on my head…and He knows when and if Emma will be healed here on Earth of in the Heavens. I keep reminding myself that God loves her more than I do…which blows my mind. Because when I look into her beautiful hazel-green eyes and watch the sun shine on her blonde hair, I can’t imagine anyone loving her more than I do. But I lack the ability to hold her in the palm of my hand…however God is holding her and I in His palm! I grew up listening to a song that said…”I don’t know what the future holds, but I know who holds the future, and I know I rest securely in the palm of His hand.” Praise the Lord that He lovingly holds us in the palm of His mighty hand!! Thank you to everyone for your love, support and generosity! You honestly make my crazy chaotic days, calm and encouraging. Today I was reminded that the JOY is in the JOurneY!!! How can you find joy in the hardship you are facing today?? Let God help you find out!! Have a beautiful evening my friends…sleep well!!
Posted on: Wed, 16 Jul 2014 07:09:20 +0000
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