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Showing posts from 2015

Still here, just busy

October came and went and I literally did not have time to document any of it the way I would have liked to. There have been many times in the last {almost} 6 years where I felt like I was impossibly busy. I kind of was, but I have learned in the last 3 months what busy really is, and particularly the last month. More than once, we've broken and tied our old records for the number of medical appointments in one day and in one week. Not something I'd recommend trying. I've had to let things go that made me really sad to have to let go, like attending some of my older kids' school events. So much of my time and energy has been demanded by our new "adventure" that I have had to make a lot of sacrifices, and so have Donny and the kids. The things I've still been able to do have not been up to the standard I'd like them to be at. For lack of better term, everything I've done for the last month (or really 3) has been pretty half-assed because that'…

Sleep study results

Normal. Gosh I hate that word. Raya's sleep study came back normal. She did have some periodic limb movements that woke her up, but not enough to fall into the range of periodic limb movement disorder. She also had some episodes of obstructive sleep apnea, but not enough to warrant CPAP. (I'm okay with that because getting her to sleep with a CPAP machine would not be fun.) She also snored all the way through it but not bad enough for anybody to think there's anything to address there either. Her sleep efficiency score was 94% (whatever the heck that means) so basically according to her sleep study, she's fine. UGH. Except for the part where she can't fall asleep without medication, and can't sleep through the night, and sometimes can't go back to sleep when she wakes up in the night. Like Wednesday night when I had 2 little girls wake up at about midnight and neither of them would go back to sleep until 3am (Raya) and goodness knows when Piper fell back to…

August/September Update

My lack of posting lately is a direct reflection of how much of my life is consumed with taking care of children (and their various needs) in one capacity or another. I am certainly not complaining about that. If there is anything that I have gained in the past 6 weeks, it is a deep (or deeper) gratitude for the privilege of having and raising my children, and being able to make decisions about how to take care of them and raise them without having to ask permission from multiple other parties. It's hard to comprehend just what a privilege that is until you see that privilege taken away from someone you know. Being involved in the capacity that we are involved in has been an eye opening experience in many ways and I can't believe how frustrating it all is. We are being kept in the dark about so much, but yet so much is being expected and asked of us. We are grateful to be able to help in an incredibly difficult situation, but this is so hard. Vagueness is one of my biggest pet…

Still hanging...

I've been playing phone tag with the genetic counselor. Well, mostly it's been me leaving him messages and then the one time he called me back, my phone must have been in a dead zone because it didn't ring, and then suddenly had a voice mail with no missed call. And of course it was at 4pm on Friday so do you think the guy answered his phone when I called him back? Of course not. His voice mail said, "There are some results I want to discuss with you." which I assume and hope means that there is more to the results than "normal" and that it's not another "well, we found XYZ but we don't know the significance of that, if any" because I'm so over those.

My mission in life this week (aside from taking little girls to appointments) has been to purge all of the excess clothing out of our house. I'm pretty sure that clothing is reproducing in dark corners of our house because that's the only way I can fathom how we have the amoun…

Sure, go ahead and leave me hanging

Words escape me to describe how this week has been. The usual choices of "insanely busy" and "exhausting" and whatever else I would normally say just don't do it justice. I won't even try to explain it all but there are some important highlights.

1. We saw our former neurologist, who left the hospital-affiliated practice a couple years ago. I decided it was time to follow her, because I like the way she thinks, and I like the approach she takes with kids like Raya. The results of that appointment are that we are finally having the sleep study done that the hospital neuro clinic was supposed to have done a year ago and never called me back to schedule, even after I left multiple messages. We are also having a huge list of labs done to check things we haven't looked at in a couple years, and several things we've never looked at at all. We also have a referral to a naturopath in the area who may be able to help us look at things in a different way. We …

Week 1 of kindergarten: DONE!

Raya's first week of kindergarten is in the history books! Due to a lot of hard work by a lot of people, everything went about as smoothly as it could have. Sunday afternoon, we packed everyone's backpacks with the rest of the school supplies that I had bought late Saturday evening. Normally it would give me anxiety to wait that long but it came down to a choice between taking a bunch of kids school shopping with me in the middle of the day when everybody else and their kids are school shopping, or waiting until Saturday evening to do it by myself. One by one, I sat down with each kid and checked off everything on their lists. (Except for the Kleenex. Had I bought the number of boxes of Kleenex requested by each kid's list, we would have been carting about 15 boxes of Kleenex to school on Monday. Ain't nobody got time fo' dat.) Sunday evening, we continued our tradition of having Donny give the kids father's blessings to help prepare them for the upcoming scho…

We made it, babe!

Dear Raya,

It's late and I should be in bed. We have a big day tomorrow! I know every mom says this, but I really can't believe you're starting kindergarten tomorrow. I would say that I don't know where the time has gone, but I know exactly where it has gone. Time flies by when you're working hard, and we have been working HARD for 5 years, 8 months, and 16 days now.

When I first laid eyes on you, I could have never imagined what our journey together from birth to kindergarten would look like. To be honest, it was not at all what I wanted for you. I wish you had never been subjected to half a dozen needle pokes in the middle of the night on multiple occasions. I wish that no NG tube had ever rubbed against the tender tissue inside of your nose and no tape had ever made your soft little cheeks bleed. I wish that your first word had not been "blood pressure" and that you hadn't uttered your first word within the walls of a children's hospital.

 I wi…

Back-to-school time again!

No, that title is not a mistake. We really are starting back to school next week. In July. Ack. I haven't even finished writing about our trip to Idaho at the beginning of July! The last week or two have been a bit rough though, and while I love my children dearly and I know I will miss them when they go to school, they have been making it SO HARD for me to be sad about school starting. So. Much. Bickering! They had such a great time while we were visiting family in a cooler climate where they could spend all day outside every day that coming home where it's too hot to do anything outside and we don't have a great big farm to roam around on was a huge downer for them. They've been bored so they've been doing what all siblings do when they get board: bug each other.

While I was driving them around from place to place today in an attempt to cram as much end-of-summer-vacation fun into our week as we can, I kept catching myself thinking about the things Piper and I ca…

Summer Travels

We spent the first 9 days of July traveling. We live about 1,000 miles away from my family and had not been back to visit them for 3 years, so it was a well overdue visit. Road trips are SO not my favorite. I really REALLY don't care for long road trips, but sometimes you just gotta do what you gotta do. Driving costs a fraction of what it would cost to fly and rent a car when we got there, and we also got to stay overnight with my grandparents on the way there and back, so it was well worth the drive. We decided to rent a minivan to make the trip so that we didn't put the wear & tear on our own vehicle, and it was a great way to go. We have an SUV, so the kids think vans are really cool.

I do not like road trips. Really. When it comes to vacations, I'm not the "enjoy-the-journey" type. I'm the "let's-hurry-up-and-get-there" type. Unfortunately, one can only hurry up so fast when driving from Arizona to Idaho. Thankfully, it was a very uneve…