First, let me start with the sleep study...we haven't gotten the official results but Carson did wear the cap ALL night. Last sleep study, they uncapped him in the middle of the night for increased work of breathing. So that is positive. I am hoping that while they didn't feel it was necessary to uncap Carson's trach that they did still, at least, note the periods of increased work of breathing on the data. So then we know that they do see what we are talking about but that it is not of major concern. And secondly, that evening the nurse practitioner from Cincinnati called regarding a different topic but I was able to talk with her about my concerns when he is sleeping with his cap on. She was not concerned with the videos I sent previously and she wanted us to restart capping at night...as she explained it (& I agree) this time of capping at night is really what is going to tell us if he is ready to have the trach removed. While Carson's airway will never be 'normal', we need to see if it is functional & safe. We will in part do that by capping his trach and seeing if he is more tired during the day, if he is resting comfortably at night, etc. SO.... we have now been capping at night for about a week and a half. And we will continue to do so until we return to Cincinnati in November.
I feel like I am in a much better place now...with acceptance and hope and trust at where Carson is now and for what the near future may or may not look like. It's always a process and it often involves twist and turns, suffering and happy times while we wait for our miracles. I've been reading a couple different books that have helped change my perspective but it was just yesterday that everything came together and I felt like God hit me on my forehead and said hello...don't you see that I'm doing & have done!
...I just started a bible study and this week's lesson was on Eve and more specifically on how although she had everything, she wanted the one thing she couldn't have. How we often get focused on the things we don't have and end up missing all that is good! It's all about shifting our focus so we can revel in God's goodness. The woman told a story about watching the metamorphosis of what she thought were going to be butterflies with her young daughter and when they turned out to be MOTHS (NOT butterflies!) she was very disappointed. Yet, her daughter was just amazed by the transformation, even though they were moths. The woman said while she was still sitting there disappointed, her daughter came up to her and said, "Isn't that just MIRACULOUS?!?"
Fast forward a day and Carson was finishing up a therapy session with our beloved speech therapist (one last attempt to see if oral motor strengthening will make an impact on Carson's oral feeding). Carson was done and she was commenting on how far Carson has come...that he was eating Cheerios like it is nothing, eating cheese cubes, and drinking water out of a water bottle, etc and although it is probably hard for us to see because we see him everyday [and let me tell you, if one thing causes the most daily stress, its the feeding...many times of gritted teeth, less than patient words, and frustration over the years], she sees the huge improvement. And then she says..."It really is MIRACULOUS!" Same WORD even...Sometimes God really does use other people to speak to US!
So long story short, I had gotten so focused on what we didn't have that I was missing all the GREAT improvements! And to top it off, this morning I was bringing another toy down from the attic for Brody. As I began to clean it and noticed that the music keys were sticking, etc., I was reminded of how much Carson & Kellen used this stander and the many times Carson would have PUKED on those keys (sorry for the unpleasantries : ) but I vividly remember a time, I thought I would ALWAYS be cleaning up puke. And now, it is on a very RARE occasion that I have to clean up puke. It is such a fine balance for me to occasionally let myself think of the harshness of reality, the suffering that can be so lonely but then to look up and see how far we have come & be content but then also balance that with pressing on and doing the next things to help Carson master eating, articulation, etc. That balance of being content yet continuing to try to better yourself!
With all this said, thank you for your many, many prayers & love along the way because it is in part those prayers that have brought us so far! And Carson (& Kellen) have come so very far!!
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us." Romans 5:3-5
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| I can't hold up this rock much longer!! ; ) |
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| They fit much easier than Preston & me! |
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| We had a wonderful time at Elephant Rocks! |
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| And don't forget about me....I'm 4 months old today!! Time flies.... |
