Day 2...Kid Update

Two days in a row...so far, so good.

This is more of a kid update. We started Benjamin on folic acid therapy recently. He's been gaining some words here and there, so I was hoping by starting it, maybe he would soon start putting 2 words together...if he responds the way we've seen Ian respond to it. He was so cute the other day because he imitated what he always hears Ian say after a video has stopped..."uh-oh, stopped!" So cute! I also just got loaned to me an auditory device from our early childhood intervention program. Or maybe it's called augmentory...not sure. Anyway, it's suppose to help with language by having him work on making a choice between 2 items, push the button with the picture of his choice, and hearing the item (plus, we'll add the word "please" to make it 2 words). Goal is that since he's a good imitator, he'll start to imitate what he hears on the device.

Benjamin has also the process to begin the PPCD program (same program Ian started in) at school. As I look at Benjamin, it's so hard for me to imagine Ian that little starting school (Pre-K). As soon as he turns 3 in April, he can start the program. We're so excited to be able to be working with the same teacher Ian had for 3 years. She's just wonderful. And, of course, there's a lot of nervousness because Benjamin and Ian are so different. But I've no doubt it'll be great for him.

Avery is just doing wonderfully....well, if you take out the huge amount of 'attitude' she's gained. :) I was so proud because her Pre-K sent home a note letting us know the kids will be working on learning their phone number....Avery already knows hers, and her address. Hopefully she'll 'show off' her knowledge instead of being shy and acting like she doesn't know it. She's been such a good big and little sister to the boys. She's so loving and caring toward them (when they're not fighting of course). Her and Benjamin are best buds.

Ian is doing great in school. We started working on recognizing numbers at home. I figured out that he can count really well, but he can't recognize that a written number actually stands for something. So, we've been working on the #1 for a couple of weeks now. I made this huge #1 and put it on the wall. Then I spelled the word out and put 1 dinosaur with it. Everyday we would go over it. Everyday he would say every other number but 1. We had a breakthrough 2 days ago! He only called it a 4 before then calling it a 1. I was sooooo proud!

We went to the neurologist a few weeks ago (which is always a waste of my time...gotta find a new one). I told him we would like to switch him off the guanfacine and back to clonodine. Of course, he didn't argue with me (since I know more than him in this area). We think it has helped him out at school by taking partial dose in the morning, then another 4-5 hours later. We've loved it at night because he's practically back to wanting to put himself to bed.

Once again, I'd better end before you decide to quit reading!

UH-UH!

Well, we're having a little difficulty 'enlightening' our neurologist on the folic acid therapy. We faxed him all the info. from the Hagerman research we found, hoping we could all be on the same page. Previous to the appointment and after 'reading' the info. he did prescribe a low dose of the folic acid over the phone for us.

We get to the appointment and tell him we want to move Ian on up to 10 mg, incramentally, like we had been doing so far. He was quite hesitant, left the room, came back, and proceeded to tell us what folic acid was (like we didn't know). Against what he would have wanted to do, he went ahead with the prescription, working our way up.

Then came the battle with the pharmacist. Basically he wanted to talk to the doctor because he was concerned about the dosage and wanted to be sure the doctor was in his right mind when he wrote the prescription out. Don't get me wrong, I am grateful there are people out there watching for any weird stuff from doctors. However, not when it inconveniences me - ha ha. So, long story short, the doctor would not override the pharmacist, so I'm stuck with a prescription of 2 mg. He had already worked himself up to 6 mg a day. That would be a step back. Whatever.

So I went to get the prescription, deciding that we would continue with what we've been doing and when that bottle was gone, we would get the higher dosage pills from a doctor friend who does more holistic stuff. When I get to the pharmacy they said insurance (medicaid because he's on SSI) isn't going to cover because it hasn't been 30 days since his last prescription. I just paid for it myself - it was cheap. Then I went to the vitamin store, bought a bottle of 800 mcg and am giving Ian a total of 8 capsules (emptied into his juice) a day (about 6mg). We were giving him 8mg, but then started noticing some behavior issues. So, I dropped back down to 6mg. I'll up it back up just to be able to decide if it's that or was just an off-week for him.

So, then I email NFXF for references for a new pediatrician and neurologist in our area that are familiar with FX. They sent back one pediatrician and one neurologist. Never heard of the pediatrician. The neurologist?......Yep, the same one we're using! Ugh! I figure we'll be a good source for him when other FX parents ask about folic acid therapy! :)

Sometimes ya gotta laugh just so ya don't scream.

Catchup

Okay, catch up time. I'm probably missing stuff, but this is what I have time for right now. Although Benjamin isn't in any of the pictures, he's been doing a lot. He's starting to say single words more frequently. He'll say 'mooooorrrrrre', 'dink', 'bite', 'bath', 'dowwwwwn', 'hi', 'bye'. He elongates about everything he says. I hear that's the way is supposed to be done here down south. A 1 second word becomes a 5 second word. Anyhoo, he's doing good. We had an orthotics appointment a few weeks ago. He'll get his SureSteps in about a month. Hopefully that will help get him walking a bit stronger. His knees buckle a lot and his feet pronate a bit. I can't wait to see him in them. I got them with dinosaur print. Okay, so on with the pictures:



My niece got married in April...little late in announcing. She was such a beautiful bride. Look young? That's because she was only 19. (She's 20 now). She's also now pregnant. Can you say honeymoon baby? If she's startin' this young, I expect her to pop out a bunch of babies! Seriously, so hard to think of her as a mom. She seems to have grown up so fast. She'll be a great one though.

Ian lost his tooth a few weeks ago. LITERALLY LOST IT! We have no idea where it is. We just happened to notice his hand and mouth were bleeding. I thought he made his finger bleed by chewing. But then Jim noticed the tooth missing. (Doesn't it seem kinda early for him to be loosing teeth?) We had noticed over the last month that his two middle bottom teeth were spreading apart more. Now we know why. I just hope I don't find that tooth somewhere. I do NOT do well with the whole loose tooth, pull tooth thing! When I taught 3rd grade, that's the one thing I couldn't handle. It's not a gross thing to me. It's more of a "fingernails across a chalkboard type thing." Can't explain it, but it gives me chills just writing about it.


Okay, so the niece got married in April. My nephew (from the same sister as mom to my niece) just got married last weekend. Yes, my sister is quite a bit overwhelmed at becoming a MIL twice and finding out she's going to be a grandmother! This is a picture of Avery and my other niece (from my other sister). Avery was quite the hoot. My niece was the flower girl in both weddings. Cute thing is the dress she is wearing belongs to my oldest niece (that just got married). It's the same dress she (oldest niece) wore in mine and Jim's wedding. Confused yet?


This is my handsome nephew and his new bride. His wedding was a lot of fun. He is 26 and is such a good kid. Not perfect. But he is definitely a family guy. He still hugs and kisses all over his mom and his aunts. I'm really proud of him.


This is my brave Avery. Just last year I couldn't even get her off me in the pool. Now she's jumping all by herself. I wish I could have gotten a picture of her when she has her legs bent and stretched like a frog! We left her at my sister's to spend the week with her cousin after we came back home from the wedding. I go get her today. She's had a lot of fun, but is ready to come home.

Another thing going on is we started the Folic Acid a few months ago for Ian. I'm not sure our neurologist understands much about it. I gave him the info. from the FRAXA sight (Hagerman's stuff). If anyone would like to post a comment to me about how they went about with their dosing, feel free. We're up to 3 (1 mg) pills twice a day. We've worked our way up to that, and will move on to 4 (1 mg) pills next week. Right now the pills are working fine with Ian, but as we move up I don't think it's going to be a great option. But our dr. doesn't seem to know how to get it compounded to a liquid. Like I said, I don't think he's ever gone this route before with his other patients. From what I've read from some, it doesn't seem like an easy process???? Thoughts????