H update

Stole this from an email to a friend. . . .

We've finally bit the bullet and are taking H home one afternoon a week.  She still really should be coming home every afternoon, but logistics wise, I don't know how to pull that off.  ([Lil'S's] nap is 11 to 1 or 2, and he doesn't do well with interruptions to that--I don't want to mess with his sleep in order to get H her sleep.  [S] will be coming home this Tues to pick her up, and I have to find someone to stay with sleeping [Lil'S] while I get her next Tuesday, but at least we'll have Christmas break after that, right?)  She's been getting stomachaches that have been increasing in frequency since we started her eye drop treatments, so it's obvious she needs her sleep so that she can better handle the stress of it all.  Although she's only "allowed" 12 absences, her principal said he wouldn't be coming after us for them.  They usually only make a big deal if absences are really excessive.  Phew!  A friend of mine told me today that her son missed 18 days for various reasons through his kindergarten year, so that made me feel better.  I hope I'll be more likely now to give her a school holiday when she needs it.  Yes, she may be missing out on some academics, but there's a ton she's missing out on learning here at home too.  We've been unable to expect even the most basic of responsibilities because she's just too tired (or wired) to follow through on things regularly.  If she wasn't so much better when she's well-rested, I'd think she had severe ADHD.  Honestly, she very well could have mild ADHD--her sleep has made me wonder, as difficulty falling asleep has always been a problem for my ADHD brothers and I--but she wouldn't be able to receive a proper diagnosis if she's not getting the sleep that it's obvious she needs.  She may be asleep by 6:30 most nights, but the fact that she starts zoning out or tantruming at 5:30 (usually mid-dinner) shows she really needs to be asleep sooner.  (And then there's typically the 2:45pm and 4pm crashes and the 9am and 10:30/11am ones on weekends. . . .  How do I keep forgetting those??)

I wish S and I were more assertive.  I mean, I can be assertive with people I know well, but with those I don't know well, I'm often more passive.  I think we'd be bringing her home more often were we so--and I certainly would have been bringing her home from the start!

A big blessing this past week is that H hasn't had a cold--S and I have mild ones, but gratefully H and Lil'S have been spared since theirs ended around Thanksgiving.  H had various colds all of Oct and nearly all of Nov, on top of school and eye treatments and sleep dep, so it's been a great relief for her to be better in at least that aspect.

Conference Request

Sigh....I finally did it. I didn't want to do it, but it had to be done and probably should have been done long ago.

Hi Mr. R[...] and Ms. M[...],

When would be a good time for us to meet to discuss H[...] further? Without her mid-day naps she has continued to act overtired at home, has had constant colds since the onset of school (excepting 3 weeks in Sept) that have often worsened her asthma, and is not handling well the additional stress of her vision treatments (has been complaining of stomachaches 2-3 times a week since we started them back up). She really needs more sleep. I do hope we can work something out to let her get it.

Thank you,

R[...]

eye stuff p.s. re: Lil'S

At H's most recent appointment, when talking about scheduling H's next appointment, her doctor looked at busy Lil'S and said she could check his eyes then too. I was so relieved when she brought that up because I'd actually been wondering earlier that week what we needed to do to make sure his vision stayed strong--would she be willing to just check him out mid-H's appts or should we pay the $60 for an exam however frequently or what. Phew! With how strabismus is a genetic thing (ha, one we weren't even aware would be an issue, amongst all the things we knew could be!), I knew Lil'S was at risk, and it seemed to me that there have been times his eyes have been slightly misaligned--usually when he's tired--and it's mostly noticeable in pictures, when the light is reflecting off his eyes. However, I think I'm also so used to looking at family members with slightly mis-aligned eyes that I wonder if I really don't know what straight looks like anymore! ;) I did realize since the appt that Lil'S's eyes would go wall-eye when he was a young infant, like H's did. I'd read in a baby book that that was normal up to about 4 months, so I'd really have to ask about that further to see if that's really correct, if he's at higher risk, yada, yada, yada....all those things mothers worry about.

Pictures for Miss E!

Waiting for the bus Monday morning.

Well, I've already posted on H's new amblyopia treatment. However, I wanted to post a few pictures for a friend.

Matching Outfits!

We learned a college roommate of mine, her five-year-old girl also has strabismus, but in both eyes. I chatted with my old roommate on Facebook last week, and she said her daughter had just had surgery to try to keep her from losing her depth perception. I'm glad surgery went well and she's on the mend! We showed H their family blog, which she was so excited about. The girl wore an outfit very similar to this on her first day of kindergarten, and H was very excited to go match her. She wanted her hair in braids with ribbons tied on the ends, like Mary and Laura in the Little House on the Prairie series we've been reading with her. Too cute!

Getting her backpack ready

Heading out the door with Daddy

H's silly self portrait with our cell phone.

You can see her right eye is dilated from the atropine drop. We're grateful that at least getting the medication on her eyelids seems to blur her vision for a day, and maybe two. That will hopefully make it easier for her to adapt to having the drops full on.

We started atropine last week Tuesday. It really was pretty good timing as I was able to send her teacher a letter about it that morning and then meet with her briefly that evening at Back to School Night. Her teacher sent a note home the next day saying that she complained about the sun being too bright, a typical issue when you're eyes are dilated, so we headed off to Walmart's Vision Center to see what we could arrange for her for sunglasses. We couldn't grab just any old sunglasses since her vision would be compromised out on the playground, so I expected we'd have to pay out for Rx ones and just consider it a necessary medical expense. Price for prescription sunglasses: $80. Mr. Vision Center Employee put on his thinking cap for us and found that there was a pair of clip-on tinted lenses that just happened to fit her little glasses. Price we paid for clip-ons: $16.01 with tax. Thank you, Mr. VCE!

Mr. VCE taught H how to use them, and we laid out a plan with her to keep her clip-ons in their case in her lunchbox. After she was done eating her lunch, if it was sunny outside, she could put them on her glasses and go out to play. When she came back into the gym to grab her lunchbox, she could put them back in their case to keep them safe, and then she'd always have them.

Well, we never got to test out that plan, as that night H was lying in bed on her side and reached up with one hand to pull off her glasses. As she pulled, she broke off the ear piece she was lying on. Sigh. This was at least the third time her frames had been broken since she got them in March--the Vision Center employees know us very well, and of course H dresses up especially for them before each visit--but at least we didn't have to pay for replacements with Walmart's warranty. I'm wondering now if the frames are really $2 quality, so they figure they're getting a $7 profit, which would work if the frames didn't break so easily. Or maybe they're really 50c quality. The plastic isn't very strong--that or else I have strong kids, which is pretty true. Although I really couldn't compare them to other glasses outside of the reading ones I never broke as a 9 or 10 year old. (Lil'S broke her glasses twice by just pulling on them. I realized he was the culprit of a previous incident when one night he picked up her glasses off her nightstand and, before I could grab them from him, grinned up at me with his "Check this out, Mom!" smile and, without even a hard yank, pulled them apart. Talk about easy to break.) Unfortunately, this time around the Vision Center was out of those frames (imagine that), but at least they weren't discontinued and could be ordered. We're hoping for a phone call any day now, but at least by this Friday.

So, no more drops for the time being. At least we're not in an atropine study, eh? We were planning on still having her wear her patch each afternoon but eventually decided to just not even make an issue of it in order to focus on getting her to bed on time each evening. So far, so good. Her sleep needs to get under control, or when it's time to wear the patch or use the eye drops, her resistance will be seven-fold what it would be otherwise.

Another thing that might help H cooperate with her treatments is that she has met a girl who wears a patch to school: a fellow kindergartener who even shares her name! She said she first saw her at the library, but now she sees her at P.E. twice a week, which is combined with all the other kindergarten classes. I told her today to ask her who her doctor is. It would be fun if they went to the same place. :)

Stress!

Wow, life can be stressful sometimes. We just got rid of one major stressor (for a while anyway) and were handed a new one. I'd say I wonder what's next, but I think I'll just focus on these for a while. . . .

- Well, pregnancy. It's not bad, really. Fatigue is pretty well my lot in life right now, and I've learned to manage it. Hip pain and pressure are certainly a little more challenging, especially when they are such that I have to stay off my feet or hit me when I'm not expecting them. And my asthma's not all that bad, although gagging or actually losing breakfast after taking my meds isn't that fun....

- H's eye treatment: This is what we were just hit with. We've finally got her cooperating with the eye patching--would have done it sooner but life's been crazy and she was sleeping horribly, which means no even mentioning the word "patch" unless you want to listen to a melt-down. We were paying her a dime for every half hour she'd wear it, we got her a couple library books about girls who wore patches, and we even found a friend of mine's daughter is dealing with similar issues, so now she has a pen pal! And then we go to the doctor, who recommends more aggressive treatment: atropine eye drops to blur her right eye through the entire day. Well, it's not surgery, so I'm thankful for that (although I'm sure there are going to be moments where I'll think that's debateable). This is the same child, however, who asked or tantrumed every day for nursing for six months when I was trying to wean her; she does NOT back down from what she wants--even when I'm being a good, consistent parent! Gratefully, her desire to ride the bus and go to school overrode her desire to not have eye drops--at least long enough for her to say so. We still had to pin her down and just put them on her closed eye (doctor said that was better than nothing), but, hey, we got that done and she still caught the bus as it was late. That's called a heaven-sent blessing. She got her reward for at least partially cooperating. I am just hoping now that she got enough medication exposure, although that really can just come with time and experience. She doesn't have to have full-success with the med just yet.

- Diet-shhmmiet.....okay, this is going to be a little different issue with diets than most people may complain about. (Not that I'm really complaining, just listing these things. There is a difference....although maybe there's a mite of complaint in here too. I'm working on that.) I never thought I'd be one of those families where the mom is particular about what everyone eats. This causes this, that does that, etc. Insanity. Well, here I am, having to do all that! What a paradigm change this has all been! S is on a starch-free diet, as in microscopic bits of starch are no-nos. These days, various forms of starch are added to nearly all processed foods, ha, unless they're the expensive version. ;) So, in addition to no grains, most processed foods are off the list as well. And I guess I'm using the term "processed" very loosely, as we tend to avoid highly and even moderately processed foods. Go look at a package of shredded cheese--they add starch to keep it from clumping together. Yogurt (except Stoneyfield). Chocolate milk (but not Hershey's syrup!). Pretty much anything fast food, so my occasional sanity savers are GONE.

Lil'S appears to have a mild allergy to egg. It's simply bizarre. He doesn't get rashes if he doesn't eat egg. If he eats egg, he doesn't get rashes right away (outside of diaper rash, he's been quick to get those after he turned a year or so), rather he starts reacting to things he usually doesn't react to: the rubbing of the back of his dry diaper, our weekly calzones. We had him off egg for months, had him skin tested with no reaction, and after two mornings with egg, oh, look at those pink cheeks--face and bum! I put a different brand of diapers on him, and he just developed a new rash where the new diapers rubbed. This is obviously not your typical allergic reaction, but it's apparently led to his immune system being oversensitive, so looks like we have to watch out for it. And, with S's no-starch diet, what do you think we all eat every morning? Eggs. Lil'S was simply in heaven the mornings we finally let him have some, and I'm incredibly grateful he's an easy going child now as his complaints to not get them are fairly mild.

H - she's so completely out of her mind tired that she hardly eats anything. Either she's too tired to eat or she's too wired to eat. So, high-calorie (high fat/protein) has been the goal with her. An egg for breakfast (snuck in cheese today!) is the most we can ever get into her at breakfast time--a mere 70 calories, but she's simply just not hungry. Ah, well.

Me - lactose-intolerant, overly so. But I've been able to cheat lately. And I've also splurged with the expensive soy yogurt (Stoneyfields' is MUCH more palatable than O'Soy, which is where I'm cheating as it's milk-based culture rather than soy based. My excuse is the 6 probiotics, though.) Our finances can't support all this much longer, though! What else am I going to eat while tired and pregnant, though? Five bowls of cereal through the day just doesn't quite cut it anymore. That's just not healthy. Variety needs to happen somehow.

yes, insane.

Glasses!

Here they are!

They arrived a day early, but we were unable to get them until late tonight, so we're going to wait until tomorrow to start her patching. She's actually excited about her patches. She even took the box of them into Walmart to show them to the Vision Center workers! So far, so good! I hope it lasts!