Author: Michael

This is the beginning of the beginning for a the new improved Juniper Jude, now with updates and blogging. I apologize for taking so long to set this up. Sometimes the internet doesn’t cooperate with me, and setting up this blog, which is essentially clicking 2 buttons, for some reason was much, much harder than it should have been. But, alas, here we are- the default WP theme, with absolutely no bells and whistles. But I think the important thing here is that it’s up and running, which brings me to the theme of this post, “keep trying shit and something will work, probably, maybe.”

Juniper is now 9 months old. To recap, Drs gave her 2 days tops, then 2 weeks, then quit giving times, then started giving time lines again, then stopped again. But here she is, cooing, making raspberry sounds, fussing, sometimes fighting with us. Sometimes fighting with her friends- stuffed animals, that get flung across her crib, onto the floor. It’s amazing what our little creature is turning into: a real human baby. Her personality has grown so much. Since we’ve missed a lot of time, I’ll list out some of her likes and dislikes:

She Likes and/or Loves

• She loves snuggles
• Hand holding
• The Beatles
• Strange sensory youtube videos with theme park style children’s songs
• Dancing with Danielle or myself
• Air drumming (with some assistance)
• Her pacifier and/or my pinkie dipped in strawberry milkshake
• Her Mom, and specifically snuggling her Mom’s boobs and/or shoulder
• Her swing (most of the time)
• Clean clothes/diaper/bedding
• Funny faces
• Giggling just before bedtime
• “Me time” – I kid you not, sometimes, she just wants to chill in her crib, alone. She’s had enough, she doesn’t want to be held. Usually short lived, but definitely real.
• Songs that incorporate her name and/or her friends (stuffed animals) names.
• Tart flavors. Ok, so she tried “Electrolyte” grape flavor, which is Pedialite for adults. She made the most horrible face and immediately puked. You may ask yourself, “why would he say she likes this?” Well, the 2nd taste, she made a face and didn’t puke. The third taste she made the most inquisitive face, and it got tastebudwheels turning. I chalk this up as a win.

Things That She Hates/Dislikes

• Drs.
• Bright lights in her face
• Country music. I made this up, but God help us if she likes that shit, save the classics
• Change. Any change really. She complains for a moment, then gets over it.
• Nose suction. She tolerates mouth suction much better
• Being told she can’t/will never/won’t
• Quitters

My favorite thing about Juniper is her determination. Stubbornness? I suppose, but really they are 1 in the same. From her very first breath, she’s fought. She doesn’t give up. She works hard at something every day. Today, she’s trying a new-old formula. It’s a challenge, but she’ll step up and give it her best shot. Tomorrow, there will be another and she’s up to it.

Since our last post, Juniper has been in the hospital twice and back home twice, where she currently resides. We’re trying a host of new medicines, some that help, some that don’t and some that we’re not sure about yet. I’ve yelled at a number of Drs., nurses and other medical care professionals for their inability to properly treat things, tell her, “she can’t” or “she won’t” and otherwise incompetences.

Breathing is a challenge for her sometimes due to the secretions that she isn’t quite swallowing yet. Depending which of her 26 doctors you ask, it may get better, it may not, it will get worse, there’s no hope, there is hope, there’s a crystal ball, there’s a paper, there’s 14 years of post grad work at some prestigious Uni that says otherwise. if you’re not confused, re-read that, because you should be.

Here’s a video of Juniper making faces at me/mimicking me, the beginnings of communication (another thing she’s not supposed to be able to do):

Oh yes, the theme.

Ok, – signing off. I’m sorry this post was such a mess. I’ll do better in the future and hopefully Danielle will help, too.