Things have been a little rocky since we stopped Caleigh's IV fluids last week. Not to mention the amount of blood that was drawn last Tuesday really made things worse. Caleigh was pale and just generally not right for days. Her sleep schedule has been off and she's been fussy.
She's doing okay with her fluids. Not getting dehydrated. She's actually working the opposite end of the rope. Everyday she tends to be about 400ml positive in her output. The consensus is that her body is trying to get used to the changes, but we will probably be doing more blood work soon to check her kidneys. Typically your output should be fairly close to your input.
All of the lab work that we did last week came back fine except for the clotting times. Caleigh is now on a vitamin K supplement. We'll check her levels again soon.
We've also added a milled flaxseed supplement to the daily routine. So far it is making Caleigh's stool have more consistency. She's only stooling about 3-5 times a day right now, but the quality isn't always liquid.
We recently took Caleigh to the dentist to have her teeth cleaned. This was a 3 visit situation. Once a week we would show up and they would clean a little bit more. Caleigh did amazingly well. She didn't gag or retch once. She's all set until October.
Caleigh's eyes have really been crossed more just in this last week or so. You can tell in the photos. We've been patching, but somethings off. Maybe it has to do with blood draw and fluid changes. She is also holding her head down and to the right a lot more. Is it that she can see better with her head down (like tunnel vision) or is it a habit she has learned? When we ask her to hold her head up straight she will and she can. So is it more comfy to hang her head down? Our next eye exam is at the end of July. I think I'm going to start calling and bugging for cancellations.
Our helper/nanny has been with us now going on 4 weeks. We absolutely love her. Caleigh loves her. She treats Caleigh like a normal kiddo. Their conversations are wonderful to overhear. Caleigh lights up when she talks to her. She's really caught on to the routine. It's a good fit. I've only left the house 3 times so far, but hanging out in the other room, working on photography stuff and best of all taking a shower is SO nice.
Eric and I got to go out for an afternoon on Saturday. We ate sushi {our fav} and then we went to see the movie Grown Ups. We did a little shopping in between. All for Caleigh of course! All in all, we were gone for 4.5 hours. We made it home just in time to put little miss down to bed. It was nice to have that distance even if we were only 20 minutes away at all times.
I've been very scattered brained lately. I haven't returned emails and calls like I should. I catch myself spending way too much time on one un-important thing. For instance the blog re-design. It took a few hours tonight and I'm not even sure I like it, but for some reason I got stuck obsessing over it. I get stuck researching---look up and it's been an hour.
I think Caleigh's upcoming ARD meeting is getting to me. I've even researched some about homeschooling. I need to chill out and give the school district a chance. Geesh, we haven't even had the meeting and I'm already thinking about pulling her!
All of the go go going is getting to me. All of the therapies are getting to me. The schedule is just nuts. How are we supposed to add school to the routine? Some days I feel like a mom. Most days I feel like a corporate therapy secretary wearing pajamas.
4 comments:
Horray for the nanny working so well with Caleigh and you! It's so nice to have a bit of help - and Caleigh probably gets so much out of having a "friend" to play with. My girls both love the babysitter and my 4 year old considers her a good friend :-)
Oh, I hear you about obsessing over school, schedule, and routines. Lately, I've decided to roll with a summer schedule. School will come in the fall and then I'll have the IEPs to worry about (and since our house is for sale we don't even know where that will be!), but for now I've scaled a bit back on therapy, planned a few getaways and decided that Emma thrives when she is going along with the family flow instead of having her schedule dictate our days. I love that I was able to take quite a bit of control back and that we are all more relaxed as a result.
And, we bought an iPad! I'm waiting (not a bit patiently!) on the delivery........Marcela told me you had some tips on how to set up proloquo2go, so maybe you can pass them on to us, too?
LOVE the pictures (even if I am a bit jealous that Caleigh has all of her teeth and we are still waiting on at least 3 more for Emily - I am SO tired of teething!). Speaking of teeth, glad Caleigh did well at the dentist. We have an appt in Sept and I am nervous.
I completely understand what you are saying about school and schedules. It is crazy! Emily will be starting school in October. We might be moving between now and then so we will have to start over with doctors, therapists and school. I try not to think about it too much because I fear that my head will explode!
I am so happy to hear that the helper is working out well. That is an answer to prayers!
Interesting read, thanks for the update. I will be interested to hear about her eyes. Jude looks down, or to the right a lot. I knew one girl that looked side to side, and it turned out she could only see periphally (sp?).
A lot of good news in this post - just reminding you as your struggle with scheduling is understandable.
Blog work takes me hours, too, and sometimes I just hate how slow I am for making the smallest changes.
Her vision might be directing her head position, or her vestibular system. A couple of other reasons that are not easily explained here. Good to go with the vision first for teasing out the reason.
Best, Barbara
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