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.

Did I Really Do That?

So, I go to Kohls to buy a shower curtain. Of course, the one I like I cannot find on the shelf. When I asked an employee about it, she said she would go see if they had any in stock. So I wait, and wait, and wait. No kidding.....for 25 minutes!!!! Finally, I saw another employee, told him about the disappearing lady, so he goes to see if he can find her and the shower curtain. He comes back....no luck finding the lady and no luck finding the shower curtain. So he says, "wanna just buy the display?" I say, "Sure". So he takes it down and I take it to the register.

A friend of mine asked me later if I asked for an extra discount since it was a display. Nope, I don't ever think that fast. I take the curtain home. A couple days later I go to put the hooks in to hang it up. Oh, first I have to work 20 minutes just getting a display tag off the shower curtain. Why 20 minutes you ask? Because of what the curtain is made of, it's fragile. If I were just to rip off the tag, it would have ripped a big hole in the curtain. Okay, then I go to put the hooks on. I'm putting it on with the liner. All of a sudden, I run out of shower curtain, but I don't run out of liner! The display is a partial shower curtain!!!! Okay, some of you would probably have been smart enough to notice that at the store before you decided to say, "Sure". I, however, did not. I just knew I wanted THAT shower curtain.

Embarrassingly, I had to take it back. Lucky for the me, the clerk didn't mention anything about how I didn't notice. She only said, "They sold it to you that way? You should have asked for a discount".

You will be glad to know that they had the actual shower curtain the day I went back.

Know What I Wish?

I was thinking the other day about how I wish that I could meet all of you! How great it would be for us all to be able to meet in one place (I'd opt for anyone living in Australia).

I got a call the other day from someone who's son was recently diagnosed with Fragile X. She got my name through a friend of hers who knows my sister, and therefore knows about my situation. As I talked to her, I found myself wanting to just talk and talk and talk. I'm not sure I was even much help to her, but it all reminded me of when we got our first news. All the emotions, uncertainties, questions, etc. I told her one of the most important things to me was getting in touch with others who were going through the same thing. That's how I got questions answered, resources, and just knowing that the feelings I was feeling were okay and normal. I felt like I truly ached for her. I found myself praying for her marriage and family, knowing what a toll it can take on couples.

Anyhoo, then I started wishing this wish....especially as I got responses from those of you I requested information from via email. I've loved having you all rejoice with me in the little things and feel compassion for me in the not-so-good things. And I've loved feeling a part of each of your lives as well. So, thank you! And who knows, maybe one day........

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????

Can You Say Poop....In the Potty!!!

Ian's First Poop in the Potty...TMI, I know, sorry.

He was soooo proud of himself!

Ian enjoying his first poop party

Ian still enjoying his party

Okay, I have soooo much to catch up on. I'll try to get to it all this week. But I just HAD to post this one.

We had a breakthrough today!!! I am sooooo excited!!!! I will definitely be over-using my exclamation points on this one. Okay, so Jim tells Ian it's time to go tee-tee. We are remodeling the kids' bathroom, so there's no toilet in there. Not generally a problem since we have another bathroom. However, the toilet in our bathroom is in it's own separate small closet sized room. Uh-uh. Doesn't work for Ian. Too small of space. So, we got out the little kid's potty again....ugh! Well, Ian was being a bit too quiet for a bit too long, so I went to check on him. When I opened the door, there he was....standing with this extremely proud look on his face. When I looked down....OMG!!!!! There it was. So sorry, I realize the picture may be a bit overboard, but I just couldn't help it. At least I didn't take a picture of everywhere else the poop ended up besides just in the potty!!!!

So, Ian got his first Poop Party! Avery is staying with my sister for the week, so I let Ian call her and tell her what he did. She was just sad she was missing the party (well, actually the cake and icecream). I took Ian to the store to let him pick out what he wanted. He chose the little cupcakes (which I think he managed to shove in his mouth before I even got a picture of them), pretzels (instead of Fritos!), and cookies and cream icecream. I hope this is the first of many! I am sooooo extremely proud of him!

My Little Graduate

Daddy, Mommy, and Ian with Teachers


Ian proudly displaying his award

Again, proudly displaying award

It was a fun day in Ian's class last week. They had their Awards Day and Party. They put on a little show of songs then his teacher presented the awards. Ian got the Care Bear award. This was for the child who was really concerned and aware of the other childrens' feelings and gave them lots of hugs. She comes up with a lot of really cute and encouraging awards. After the awards they played a slide show. It was really sweet and had a section on there saying 'good-bye' to all the 'graduates' of the PPCD program....Ian included. Yes, I cried. One, because I adore his teachers and know how much they care about Ian. And two, because I can't believe he's going into kindergarten next year. It all still scares me to death, but I believe he'll be well taken care of.

Recognized

What a simple word...recognized. Well, here in Texas it's sometimes NOT so simple. The standardized tests here (called TAKS) are incredibly stressful on teachers, students, principals. I won't even go into the details. Lets just say, way too much emphasis goes into those tests every year. Too much depends on them.

There are different levels of ratings that schools get, depending on the results of the tests school-wide. There's Academically Unacceptable, Acceptable, Recognized, and Exemplary. The school where Jim teaches has never made it above Acceptable (but has never gotten Unacceptable). This year, they made it to Recognized. I was very excited for them and for the principal, who has tried so hard every year to motivate and encourage (and threaten some, I'm sure). Needless to say, she has been in a WAY good mood. If they can keep it up each year, that would be even better.

Okay, that's about the only news I have going on these days. :)