For the love of all things sleep-induced…

WHY WON’T MY CHILD SLEEEEEEEPPPPPPPPP??????

Seriously. We’re at our wits end here. Kendall’s new sleep schedule involves sleeping for about an hour, waking up for half an hour in which she may be happy as a clam and wide awake, or just a slobbery hot mess who has no idea what she wants. she will then go back to some semblance of sleep for another hour and start over again. There is usually a good 2-3 hour stretch where she is totally awake and wants to watch infomercials on late nite TV, and then maybe another hour and a half of fitful sleeping before the whole house wakes up for the day. I am telling you its getting BRU-TAL.

And this is life with Ben here. Next Monday starts “The Summer of Travel”. Which involves Ben travelling. All summer. For work. I really do like it this way – where he gets most of his MUST DO travel out of the way before the cold crappy weather of winter kicks in. It makes him a much happier person for the holidays, plus allows us flexibility for the spring time with vacations, or say, your baby decides to spend a few weeks in the hospital. you know, either way. And all i am sayin’ is that if its brutal now with two of us to get up with her 8 times a nite, i can only imagine how psychotically sleep deprived i am going to be by say June 27.

i am REALLY hoping that our 6 month well child checkup with dr. natalie tomorrow morning yields SOME kind of help with the sleeping department. SURELY they make some kind of pediatric nyquil…..right? i mean, kendall can’t be the only baby in the history of the world who has decided to forgo sleep. maybe she is sneaking baby crack? I just can’t figure out WHY a baby, who gets tired by trying to grab at toys for more than five minutes, WON’T STAY ASLEEP! ok i’ll try to find a new topic to discuss. but really, i hope dr. natalie has some ideas to get things rolling back towards a semi-restful nite for all involved.

we get to rush home from that appointment for developmental therapy (DT), and then tomorrow evening have the big final practice for Kealey and her cheerleading competition! Ben has softball, I have softball (my ankle/knee are healing quite nicely from last week’s sprain running to first), and then Wednesday – more appointments! We will be seeing our FIFTH GI doc in 6 months. This one is THE doc that Early Intervention recommends, so all our therapists will base their info off of his report. I am, at this point, not expecting much of ANYTHING to come from this appointment. She is doing as good as I have ever seen her do, so I doubt he is going to want to do any kind of testing, and will tell us again, with the imeprialistic sense of imparting the knowledge of the ages to me – that she has a milk protein intolerance and reflux. Both of which I could have guessed she would have before she was even BORN, since all three of her sisters had similar issues. Whatever. I am already rolling my eyes about this appointment, but if it helps keep all her therapists (we’re at 5 right now, waiting on a 6th) on the same page, awesome then.

the ONLY thing I am hoping we get out of the GI on wednesday is if we can start trialing solid foods without allergy testing, and if he feels like she is no longer an aspiration risk on thickened foods. I know that to those of you who have dealt with reflux this may seem backwards – but the thinking is that, while thickening feeds can help keep food from refluxing back up, the fear with kendall and her already compromised lungs (from the RSV and RAD/asthma), if she aspirates (breathes in) any of the refluxed thick foods, it will be near impossible for her to clear it without some kind of damage/sickness resulting. That’s what we have been told from her two swallow studies. So right now, no one wants to say, well hey, let’s just TRY IT for grins and giggles and see if she chokes or not.

she has to get three main issues cleared up before we can really start trying solid foods:

1. Positioning – her hypotonia/weak muscles mean that she really doesn’t support herself well. Right now she can sit up if she is pinned flat against my chest with my arm supporting her entire trunk, or if i am holding her upright with both hands. This doesn’t make for an ideal feeding situation as I doubt i would be able to feed her with my toes holding the spoon and lifting it up to her. Could be fun to try though… Right now we don’t have a chair that will help her stay in a correct midline position – she eventually just slumps to the side or starts holding her head up with her shoulders – again, neither of which is conducive to swallowing efficiently. So her phsyical therapist is starting the application process to get a chair for kendall with a special backrest, headrest and harness to position her better for feeding, as well as teaching her muscles how to sit up properly and allow her to be a part of the family. I am not sure what i thought the chair would look like, but seeing a picture of it was kind of a reality check. It’s definitely the kind of thing you wouldn’t expect to see a “regular” baby need. but we’ll see. she has continued to surprise her therapists each and every week with her progress, so maybe by the time the chair gets approval she won’t need it. But positioning is definitely her first hurdle to eating solids.

2.) Allergies – right now Kendall is on an elemental formula, which means it is as broken down of proteins as you can get. It is the easiest form of food to digest, and completely hypo-allergenic. On a different kind of hypo-allergenic formula, kendall broke out with hives and had shallow breathing. Allergic reaction? likely. But who knows to what, or why she had it. I found some hypo-allergenic organic brown rice cereal and sure enough, when i put a TINY amount in her bottle, again with the hives. ??? Again, no one wants to be the one who says to just start trying foods when she may react again to whatever we give her. Allergy testing is “controversial” in babies as young as her, because the results can be false – either false positives or false negatives, not giving an entirely clear picture of what is going on with a baby’s tiny immature system. So we have to get some kind of grip on whether or not kendall is having food allergies, or if her body is just throwing random reactions to any and all new things.

3.) the Reflux – as I put above, there is almost more of a danger with thicker foods than with her very thin formula if she refluxes it and swallows it back down the wrong pipe. So we need to have some kind of reassurance that the violent reflux of the past few months is either gone, or well enough controlled on her 3 reflux meds to safely try solid foods.

hopefully the GI dude on wednesday can give us a better timeframe or picture for starting all that. I guess it just seems like a “normal” baby thing to do, and the longer it seems like we CAN’T do that, the more removed from normal milestones she seems.

On a happy note – her first tooth finally broke through today! I think that pain may have SOME part of her current sleepless state, but after going through teething with three others, trust me when i say, this is WAY worse than just teething sleeplessness. I can’t explain exactly why, but if anyone wants to come on over at around 3 am, you’re welcome to see for yourself! And of course now that i am putting this all to paper, she’ll probably have a spectacular nite of sleep to prove me wrong. But hey, i’ll take it!

So that’s our update for this week. sorry for the lack of writing in a few days. I have no idea why it has seemed busy around here, well, busy enough to keep me from blogging…maybe it’s the gorgeous weather? (not counting today and its sub-zero temps.) Oh that’s another thing I wanted to get down…

on Saturday, we went on a 5K walk for a little girl in our neighborhood who is battling osteosarcoma (bone cancer). I was honored to be able to go take pictures for her family capturing Danielle before her first round of chemo to attack the cancer, 48 hours before her beautiful hair started falling out in large clumps. And Saturday was a pretty warm day, very humid. I pushed the babies in their stroller, and kendall was in the shade of her carseat for the walk, and then in a tent for the hour or so after the walk, and was drinking her bottle that whole time. Anyhoo – after we get home, kendall was conked, and slept for about 3 hours. As soon as she woke up and started drinking a bottle again, she started violently puking. Like coming out her nose and eyeballs violent. Formula EVERYWHERE. Luckily I had some pedialyte and glucose water that i mixed into 2 oz. batches and slowly gave her those, and she managed to start keeping things down about 4 hours after the puking started. She still didn’t tolerate full strength formula till this morning, almost 48 hours later. she has felt very warm since then (cooling off a little now), but was very flushy/red in her cheeks and warm all over. The odd thing was, she wasn’t that sweaty. Normally this kid sweats buckets off her head when she gets into a good deep sleep (which hasn’t happened in a while!), but the past few days, very little. I am thinking that may  mean she was still dehydrated in spite of my pedialyte cocktails…but who ever knows with this kid? so i know that’s a lot of random info for all you readers, but if i don’t write it down here, i’ll lose it forever!

I have heard that some kids with hypotonia do have issues with heat intolerance, and i guess we’ll know more next really humid day we have. but i wanted to get down the details now so i have something to come back to in CASe this isn’t just some random bug she caught.

ok this was a rambly post. if you made it this far you should get a medal.

I hope you all had a wonderful memorial day – thank you to all the amazing men and women who have served our country in the name of freedom and liberty.

God Bless America!

 

terra