Nuffin… wish it was Muffin, but I’ve got nuffin.

by Holly on March 15, 2012

So, I am faaaaar beyond slap happy at this point. I haven’t sleep since Tuesday night I think… somewhere around there. After the complete snafu that was my Wednesday and decided to continue on in to Thursday all I had in me last night was to post that little picture of Kayla. That sweet baby knows just how to crack me up and stress me out at the same time. She is obsessed with sleeping on the hard, cold tiles lately. All I can think is that it must hurt, can’t feel good and is so cold she is going to keep getting herself sick.

Anyway, I’m still not in a place where I can even begin to figure out how to describe what lead up to quick posting, no writing, that picture of Kayla yesterday, but, as I promised myself and you, I am not going to shut down, bottle things up and disappear again. That doesn’t help anyone.

So.

This week’s snafu of choice is all about Kayla and her health issues. On the one hand I feel like we are blessed that we are not any worse off than we are, because I know others that really are in a much more difficult situation. Unfortunately, comparing the life I have to the life I expected is just as detrimental to my health as it is to compare it to anyone else’s. Honestly, in my world, one person’s definition of different or normal is another person’s weird.

I digress.

Last week Kayla had her cardiology checkup for a little hole she has in her heart. It is a congenital heart defect that is common with Down syndrome and since this last appointment showed that there has finally been some progress with it closing a bit more I was fairly hopeful that things were on an upward swing. I don’t know why I continue to get my hopes up since every time I feel like I’m just setting myself up, but nonetheless, that is what I did.

Why didn’t I keep in mind that her blood tests were also taken that day and that just because they were good last year (good as in no thyroid problems, no leukemia, and whatever other variety of things they are screening for that I am half shutting out before I lose it) doesn’t mean they would be good this year.

Even then, I know things could be worse, but I also know that sometimes the situation that my darling daughter is in with her health just sucks, even if it does go hand in hand with the most amazing and stellar bundle of joy personality on the planet. So, I am taking Kayla in tomorrow morning for her next Synagis shot and to discuss where we are at with the various tests and things coming up, but a big part of Wednesday’s complete deterioration into shutdown mode was the fact that her pediatrician let me know that her thyroid is not good. I will be going to the pharmacy tomorrow to pick up a new medication (another one) for Kayla, as far as I can tell, this time for hypothyroidism.

Seriously. Why does it feel like my baby just can’t catch a break?

I don’t really expect anyone to have an answer to that one, but honestly, does anyone understand the whole thyroid issue, because it confuses me and what I read confuses me more. Some day I would really like to not have to be doing medical or mental health research just to get my family through the day.

*le sigh*

It is what it is.

Hugs,

Holly

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{ 9 comments… read them below or add one }

Stephanie March 16, 2012 at 1:51 am

I don’t understand thyroid issues either. I’m sorry things have been tough but I agree with you in that you need to talk about it. I’m sure even writing out this post helped you feel just a little bit better. hugs…

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natalia March 16, 2012 at 5:47 am

My dear Holly, I cannot help you in any way unfortunately but I wish you to know I love your sweetest Kayla from down here. I send you all my love and hugs to you tantissimi baci

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Mel March 16, 2012 at 7:06 am

Holly – the picture of you and Kayla is so, so sweet. If you really need direction on thyroid, shoot me an email. That’s the cancer battle I dealt with and have gone the ups and downs of thyroid medication, hypo and hyperthyroidism and everything in between. I don’t know if I can be of much help but maybe I could save you at least 30 minutes on research. Good luck, my friend!

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Adelina March 16, 2012 at 9:19 am

(((((Holly))))) I’d like to wrap you and Kayla up in a big blanket of a hug. I don’t understand it either, but I know God knows what He is doing – even if at times it doesn’t feel that way.
Loved the picture yesterday. She is so adorable!

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Lindsey (Cafe Johnsonia) March 16, 2012 at 9:43 am

I love you, my friend. Life is so not fair for you, and I’m sorry about that. She’s such a sweet girl and she’s lucky to have you as her mama.

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Dana B March 18, 2012 at 10:59 am

Sorry you’re having to deal with yet more health issues πŸ™ Sounds like Mel can help you much more than I, but here’s a brief summary. With hypothyroidism, that would mean her thyroid is low so she may be taking a baby version of levothyroid, which is why I take. It generally slows down metabolism and yields a very low energy level, amongst other things. It’s a very long process to determine the right level of thyroid to take to get up to the right amount because it takes time to make a difference. I’ve been on mine for a month and have been told we won’t know for 4 more months if I need more. My brother-in-law is a thyroid cancer survivor and had to have his thyroid removed. He said he was almost hyperthyroid before he finally had the right amount. Either way, it is unfortunately a med she’ll probably be on for life. On the bright side, given all you’ve had to deal with, this may be amongst the easiest πŸ™‚ Good luck!!!

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Angela March 28, 2012 at 9:58 pm

Wish I had some comforting words to add but alas I do not πŸ™ I will say that I LOVE LOVE LOVE that photo! You have got to have it printed! xoxoxo

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OTA Mom July 9, 2012 at 4:03 pm

I am hypothyroid and have been my whole life (I’m 43), it is a fairly common condition and not immediately life-threatening, although it can be seriously harmful long-term if not treated. I can tell you from personal experience, once I was finally (!!!) correctly diagnosed and received treatment–it took until my late 20’s when I saw someone other than a FNP or a small-town family practitioner–my life changed considerably for the better. I now have so much more energy and feel tremendously better mentally. Having a thyroid problem is really a minor concern of mine these days, I take daily medication and forget about it, live normally just like everyone else. I am so hopeful your baby will feel better once she gets her hormone levels adjusted!!!

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Holly July 10, 2012 at 1:30 pm

Thank you so much for your kind words and for a peek into the future. She is on levoxyl and though we’ve had to change the dosages a couple of times it seems to be helping her.

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