Come Fly With Me.

She continues to get a little better every day. 

It is actually somewhat surreal some days, because in very many ways she is still a newborn. It’s like I FINALLY have my baby to celebrate – 6 crazy months late. And in others, she is very much a (almost) 6 month old who WANTS to do things like roll over, grab toys, interact with her world, and she can’t. And it breaks my heart just a little bit to watch her get frustrated by those things, or her lack of ability to do those things. BUT – we start the therapy parade tomorrow, and i am SO excited to see what she can do once we start working with her, finding her limits, helping her reach her potential.

She has actually been allowing us to get a little longer stretch of sleep at nite than last week – I think we topped out at 6 hours the other nite – that was awesome.

In OTHER news (somedays its hard to remember that we DO actually have a life outside of constant worry about K4)….

let’s see. Ben planted my vegetables the other day for me – we’ll see what happens this year. I may have been too ambitious. We have tomatoes, cherry tomatoes, cukes, and green peppers from seedlings, and then onions and cilantro growing from seed. If it ever decides to stay SPRING around here, that might help. I also would like to get the girls back to the zoo someday soon – possibly this week or next, depending on how many other therapies get scheduled (we’re still waitlisted for speech and occupational. I know these SEEM like something an infant won’t use, but apparently they’re both VERY helpful in the feeding/eating department. Go figure.)

I feel like I have a very busy week ahead of me but I can’t quite put my finger on WHY i feel like that. Yes, ben is back out of town this week…but I don’t think that’s why i feel semi-overwhelmed at the moment. I am thinking the lack of sleep is REALLY playing with my thyroid levels, and I could probably use a good tweak to my medication levels there…but really, who wants to add ANOTHER doctor visit in when I feel like we are living in medical offices lately? So we’ll see if we can keep all this upward trending of Kendall’s and hope that helps EVERYONE feel better.

I am very excited about the warmer weather. I am anxious to do more outside stuff with the girls – especially now that Kendall is doing so much better and we don’t have to lug around that pump with us! At least our stroller right now let’s her recline a lot, but as she gets more frustrated with always having to lay down, i may need to rig something up to help strap her more upright. For those who haven’t held her, let me try to explain what her biggest issues are now. 

She was diagnosed with hypotonia when she was first admitted with RSV. Hypotonia basically means no or low muscle tone. In layman’s terms – “floppy baby”. Oddly enough, that’s what we have always called her! Floppy baby! She is truly a ragdoll. Now I will say that she has made SOME progress as her nutrition has started to come under control. If her trunk (chest and shoulders) is supported, by your hands, pillows, blankets or whathaveyou – she has pretty good head control. She still rests her chin on her chest or her shoulders to help stabilize most of the time, but it’s improving slowly. But if there’s not SOLID support all the way up to her shoulders, she just literally crumples like a rag doll. So unless I can figure out a way to strap her in and support her all the way up to her shoulders, she has to basically lay down. Her bouncy seat is the same way – it has her extremely reclined so that she isn’t crumpled forward. This is why we have been SO anxious to start therapy to help her start building some of those key muscles. She has VERY low tone, and its pretty generalized. Her legs have a little bit more strength in them than her upper body – but even those are pretty weak (she will not put any weight on them when you hold her upright). It’s kind of hard to explain with words just how very floppy she is. I think it’s kind of the hardest part of her “mystery diagnosis” to deal with. There’s just no telling how/when/if/how much her tone will improve and she’ll be able to do some of those normal things.

And again, here i am throwing a pity party.

So i’ll quit.

It’s a beautiful sunny day outside and I got some new tunes to crank in the denali-mobile. Nothing but the Best of Frank Sinatra, and the complete Reggae of Bob Marley. When Kendall was first in the hospital and having a very hard time breathing that first nite, I turned on Bob Marley’s one love, held the headphones up to her ears, and just sang along to her – let’s get together and we will be alright, let’s praise the Lord and we will be alright….

And sure enough – we were. 

And we are.

 

Keep on Keepin’ On.

the T.

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Comments

  1. I was so encouraged, though, to see Kendall sitting up on Ben’s lap in church on Sunday. It appeared as though she was holding her head up with his support, and she was just looking around everywhere! So cute!

  2. Some wonderful posts the past few days!!! Made all the better with gorgeous, tooth-less, smiley grins like only happy happy babies can give!!! So happy to see Kendall happy and feeling good! Sounds like your days (and nights) are getting a little better, minute by minute, hour by hour. You are headed in the right direction, and therapy will be such a huge help to her and probably will be fun sometimes, when they don’t make her work too hard! She’ll be so happy to be ‘unplugged’, ‘unbelted’ and ready to ‘roll’ – literally!!! Our prayers continue, and God is hearing – and healing! See you out and about – YAY for warm days!!

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