More transition
Posted Jan 4, 2011 12:18pm
Again, we've avoided posting lately because there just never seems to be a good way to describe what we are actually dealing with. At moments we are rallying, at others we are at peace, and and others we are panicking. It kind of just depends on the day.
We should let you all know... Our sweet little man is spiraling downwards a bit folks. Lot's of changes going on with his little body, but his disposition is sweet and he is relatively happy. We will be heading to VA in a 2 weeks to start his treatment. It should take about 4 weeks and he will be the youngest patient on record to try this new treatment, but we have no other options.His entire health care team has informed us that there is nothing else we can do anymore.
Kaden's heart continues to grow weaker, as it roller coasters all over the place...and he continues to lose weight. We've had some extremely scary episodes and some close calls with the episodes of apnea, tachycardia and bradycardia. We increased his enteral feeds to 1.5 calories per/ ML which is in lay terms 50% more calories per day. We made this increase 6 weeks ago, yet he still continues to lose weight. He simply has no interest in food anymore and says literally, every time he sits down to eat, that his tummy hurts. He retches more often than he used to and isn't tolerating volume. He is still struggling with his urination and BM's, but is learning to use the potty and is quite proud of his Star-Wars undies.. On a good note, he likes to play and run around on most days like a typical kiddo and has his boisterous laughing episodes still. He still enjoys his nursing team and we are so grateful for their help.
Kylee has started working with him on his alphabet by sight. Since she is home-schooling now, she enjoys playing "teacher" with Kaden. He signs quite well, but seems to lack desire in the "learning" department. He's been enjoying his new puzzles that his grandparents bought for him and still enjoys imaginary play with his brothers. He does indeed spend more time than ever before resting and taking it easy. It's so amazing to see a 4 year old child "know" when to settle down and rest. Due to his heart, he is not perfusing well, his color is pretty yucky, and he tires quickly. He quit growing almost 1 year ago, but his face continues to mature as well as his vocabulary.
Brian is looking into employment on the east coast, and we may be moving in the next few months. There are no definitive plans as to where we will be, or the who's, what's, when, where, and why. However, we know that with God, anything is possible. Thank you for your support. Love to all.
We should let you all know... Our sweet little man is spiraling downwards a bit folks. Lot's of changes going on with his little body, but his disposition is sweet and he is relatively happy. We will be heading to VA in a 2 weeks to start his treatment. It should take about 4 weeks and he will be the youngest patient on record to try this new treatment, but we have no other options.His entire health care team has informed us that there is nothing else we can do anymore.
Kaden's heart continues to grow weaker, as it roller coasters all over the place...and he continues to lose weight. We've had some extremely scary episodes and some close calls with the episodes of apnea, tachycardia and bradycardia. We increased his enteral feeds to 1.5 calories per/ ML which is in lay terms 50% more calories per day. We made this increase 6 weeks ago, yet he still continues to lose weight. He simply has no interest in food anymore and says literally, every time he sits down to eat, that his tummy hurts. He retches more often than he used to and isn't tolerating volume. He is still struggling with his urination and BM's, but is learning to use the potty and is quite proud of his Star-Wars undies.. On a good note, he likes to play and run around on most days like a typical kiddo and has his boisterous laughing episodes still. He still enjoys his nursing team and we are so grateful for their help.
Kylee has started working with him on his alphabet by sight. Since she is home-schooling now, she enjoys playing "teacher" with Kaden. He signs quite well, but seems to lack desire in the "learning" department. He's been enjoying his new puzzles that his grandparents bought for him and still enjoys imaginary play with his brothers. He does indeed spend more time than ever before resting and taking it easy. It's so amazing to see a 4 year old child "know" when to settle down and rest. Due to his heart, he is not perfusing well, his color is pretty yucky, and he tires quickly. He quit growing almost 1 year ago, but his face continues to mature as well as his vocabulary.
Brian is looking into employment on the east coast, and we may be moving in the next few months. There are no definitive plans as to where we will be, or the who's, what's, when, where, and why. However, we know that with God, anything is possible. Thank you for your support. Love to all.
Brian and Julie
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