Some days are good. Some days are bad. It's to be expected. However, my 19 month old has taught me that really no day is all that bad. After all - God's work is perfect and He created each and every day and He is good - so, so good.
Just a couple of weeks ago I wasn't feeling very good. I had a headache for over a week straight, I was tired and achy, my nose was stuffy, I was coughing a little bit...and I was grumpy. Just plain yuck. I was short tempered with the kids, I was lazy and got behind on my lists and the house work, the grocery shopping wasn't done and to be totally honest I didn't even really care. Again, yuck. It was about 2 AM and I was up with Tucker while Daddy and the other three kids were snoozing away - they didn't even have a clue we were awake and I didn't have a very good attitude about it. Tucker was cruising around looking for things to get into - like that's the normal thing to do at 2AM - when suddenly he runs smack into the wall. When I say smack into the wall I mean SMACK! Like the wall wasn't even there. He fussed for a second - stood back up - looked at the wall like, "Man, where'd you come from" and carried on like nothing ever happened. It didn't phase him. Then suddenly I hit a wall - except my "wall" wasn't made out of sheet rock like the wall Tucker hit. It was my Maker. It was almost like He was standing there saying, "If you won't listen to me then I'll just stand in front of you and make you run smack into Me." ....and there He was. It made me think - good days come and good days go and bad days come and bad days go - but, in the midst of all of my self pity and bad days there stands my God. Unchanging and forever loving. Merciful and Holy. Gracious and forgiving. Patient and unconditional. Always. No matter what. Even when I'm being yuck. Isn't He amazing. God used my 19 month old son to show me that because I have Jesus as my Savior there are no bad days -- even when I think nothing else could go wrong. All I have to do is lean on Him and He will get me through - good days, bad days and all of the days in between.
I thought I would use this post to update Tucker's progress. At this point we don't know a whole lot more, but, we have done lots of tests and have lots of appointments scheduled for the near future that will hopefully give us answers sooner rather than later. We did have our appointment with the research team at UNC and they did the biopsy to check for Primary Ciliary Dyskinesia. (PCD) This biopsy was awful and I hope to never have to put him through anything like it again. They are trying to prove a much less painful and invasive way of diagnosing PCD, but, for now they haven't. They did a test to check the amount of nitric oxide found in his oxygen. They do not know exactly what the "correct" number should be for children under five, but, they think that it should be no lower than 150. They also do not know at what exact number proves that it is for sure PCD - however, they do know that they have never seen anyone with a number under 25 not have PCD. Tucker's number was 48. We also did a throat swab to see if any bacteria was growing - the test is still not complete finished, but, is showing a large about of staph. It will be 8-12 weeks before we get the biopsy results back. We did a swallow study this past Friday that showed us that sometimes Tucker isn't swallowing properly and causing his food to aspirate into his lungs. We have to thicken all of his liquids for now and wait for our appointment with the GI doc on the 30th to see where we should go from here. I asked if this is common in children with PCD and I was told that it is common in children with breathing problems. She did a great job of dodging my question! wink. As for now, we are just gearing up and starting to take precautions for this winter. We have ordered an automatic hand sanitizer to put by the door and a hug "rubbermaid" tote to put on the porch for everyone's shoes. We are going to ask for anyone that enters to take their shoes off outside and use sanitizer when they come in. We are hoping this will help cut back on some of the infections that Tucker is very susceptible to. As for now, we just pray and wait and trust in the Lord. If this genetic disorder is what he has then we will learn to deal with it. We will make it work for our family. If it isn't, then we will continue to search - but, either way we will make sure that we keep letting the Lord be "The "Wall" We Smack Into"!
In all your ways acknowledge him, and he will make straight your paths. - Proverbs 3:5-6
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