Don't tell me you're sorry

If I meet you and you eventually find out that my daughter has a rare disease, please don't tell me you're sorry. We don't need your pity.

Princess leads an extremely normal life, with a few exceptions. Yes, we seem to have months were all we do are appointments. Yes, it can be difficult to tell her "no" when she wants something like ketchup. Sure she takes medication every day, but in this day and age, who doesn't?

Currently, she is on an IFSP. We don't know as of yet if she will transition to an IEP. We do know that there will likely be a 504 plan involved in her schooling. This is more for her safety than for anything else. It needs to be documented what she cannot have so that everyone knows.

Yes, she wears a medic-alert bracelet. I take no pride in this. It is simply to keep her safe, especially when I can't be there to do all the talking and telling of her medical history.

As for long term, we don't know what the future holds. We don't know if there will be more medications added. We don't know if there will ever be a "cure." We don't know if she'll ever be able to manage her disease without medication. We don't know for sure if she won't pass this on to her children. All we can do is take it day by day and see where that takes us.

The things I do know is that we are VERY fortunate. Princess was diagnosed within 5 months of symptoms presenting, being symptoms technically presented at birth. Most people with rare diseases will go for YEARS without a diagnosis. Princess's disease actually has a treatment. Many rare diseases don't. We know that this is God's Will for Princess and we will continue to follow whatever path is laid before us.

Princess will lead as normal a life as possible. She will have to know that she can't have certain foods and that other foods she can't binge on them. But otherwise, she's going to grow up knowing that she can do anything she wants!

As for Rare Disease Day/Month, well, we will probably always have our jeans and/or tee shirts and our ribbons on the last day of February. We may or may not do something in the schools when Princess gets there. That will depend upon her. We may or may not do the (Virtual) Denim Dash. We will just have to see what comes. The same goes for November for Prematurity awareness and the March for Babies. Only time will tell.

Poor Blog!

This poor blog has been forgotten! I guess that's because I started a Facebook Page for Princess! Now I've been micro-blogging her adventures! Granted, it has come in handy because we had a trip the ER about a month ago for another tummy bug! But otherwise, I have sadly forgotten this wonderful blog! I've done a bit of updating. Made us a new cover. Changed the colors. May do some more tweaking here and there. Here's a list of things I plan to tell you about:

• NICU follow-up Clinic (November)
• Cardiology (November)
• Nephrology (December)
• Doc-phobia and overcoming it
• Enrolling Little Man in Kindergarten (What????)
• Little Man's 5th Birthday

And coming up next week, we make the huge 2 hour trip. But not to go to the nephrologist! Instead we are going next door to Shriners! Short version: Princess has one bowed leg. NICU clinic and a PT eval BOTH recommended she be seen at Shriners about it. So next week, we are off to there! I'm hoping to get some blog updating going here really soon! Otherwise, if you wanna follow Princess, here is her Facebook Page. Like I said, I do micro-blog there! So you may get some quick updates every now and then and longer things here. At least that's my hope!

Doc Update

So Princess has had a few doc appointments lately. Let's go back to August:

She saw the ophthalmologist, Dr. R. The great thing about this was that Dr. R is LOCAL! Like here in town local! Granted, it's only twice a week, or something, but still! We'll take a LOCAL eye doc over a two hour drive any day! Oh, and this was like the QUICKEST we have EVER gotten in to see a specialist EVER! Princess's therapist, J, called on a Tuesday morning to get all the info so he could submit the referral (thankfully we didn't have to go through her PCP, as her 15m appointment got bumped). That SAME DAY we got a call from Dr. R's office to set up an appointment! And the appointment was only like a few weeks away too! We were concerned about astigmatism, as when the nurse came out to assess Princess back in January, the nifty eye machine detected such. But Dr. R didn't see it at this time. She had her eyes dilated and things looked good. She goes back in 6 months just for a quick check and then it will be yearly!

Dilated and waiting to see the doc.

 Then at the beginning of September, Princess FINALLY got in to see her new pediatrician. Because we go to the "clinic" which is technically a "rural clinic" with labs, and specialists and even dental services on site, we will only see the new pediatrician, Dr. M for well child visits. If Princess or Little Man get sick, they can be seen the same day by a PA there at the clinic. So we get in there and, as expected, it takes 2 hours! For one, Dr. M runs late. For two, we had the WHOLE HISTORY that is Princess to go through. So by the time we left, it was two hours after Princess's appointment. And I still have forms for record requests to turn in! Of course Princess fell asleep while we waiting. The only good thing is that we don't have to go back until Princess is 2 years old, outside of the kids need their flu shots, so we'll do that in October sometime. Being we probably won't see Dr. M except for well child visits, I'm okay with her.

Waiting to see the doc.

Fell asleep waiting.

Then last week, Princess had her nephrology follow up from June. (Backdated post coming soon on the nephrologist from June.) I took Princess by myself so Little Man didn't have to miss out on his classes. Dr. H was running "more than 30 minutes behind." So I KNEW we were going to be there for A WHILE. Well, when we got back into vitals, Princess was having very little to do with ANYTHING. She wasn't screaming until we attempted to get her blood pressure. Then we finally got back into the room and she wandered around and played for about ever. Dr. H's new med student came in to take Princess's history. We attempted another blood pressure with MORE screaming.

Leaving on the long drive there!

In the waiting room.

Waiting for the doc.

Dr. H came in FINALLY after being back there for like an hour! (Talk about B-E-H-I-N-D!) So, we talk, I have her fill out the dietary form for food stamps, I get what I'm supposed to put on her medic-alert bracelet. I tell her about my mom's nephrologist and how he said that if something were to happen to her and she was stuck locally and couldn't be transported, he'd be in contact with her. And when I told her that the only time he had seen PHA2 was while he was with her, she shot her med student this look that said "I told you you were going to see a rare one!" So then when Dr. H tried to listen to Princess and feel her tummy and all that, Princess was having NOTHING to do with it. Even when the nurse went to put a bag on her so we could get a urine sample, she screamed. We did labs with MORE screaming and then attempted another blood pressure, again with no luck. I had to go down to the car with her so we could get her kool-aid so she could have something to drink so we could MAYBE get something for the urine catch. FINALLY we got that! Then we were able to check out! We were supposed to do a renal ultrasound, but after all the trauma that Princess went through, I opted to wait until next time, unless we have to do it locally. All in all, it was a 3 hour visit!

Still waiting on the doc.

Crashed out in the car on the way home.

Then on the way home, there was an accident on the road we were taking back up to the house so we had to turn around and go a different way. So by the time we got home, it had been about 8 hours from the time we left!

The day after the nephrology clinic craziness was Princess's IFSP (Individual Family Service Plan). That wasn't too big a deal outside of they are trying to be more family friendly with the goals. Okay, great! Let's take two educators (me and J) who have worked with IEPs and say "no more edu-speak" and instead be all family friendly is really kind of hard! But things worked out and her goals for the next six months are as follows:

1. Walk up the stairs at the park. (This might actually be more difficult than expected as some of those steps on those play structures come up to the kid's waist!)
2. Use a regular cup independently. (I'm not expecting no messes ever, just to be able to use a cup!)
3. Use a spoon. (This also might be a little far reaching, as most kids don't "master" this until almost 2 and a half, but again, I'm not expecting every time, just often enough to actually get food in her tummy!)

And I have to call and get her medic-alert set up. Maybe I'll have enough money to do that soon.

Milestone Monday: Blocks, Walking and Big Girl

So first up is that Princess has figured out how to stack her blocks. The most she has ever stacked is 5, but those tend to fall right away. She usually manages about 3-4 blocks before they fall over.

Next up is that Princess is WALKING!!!!! She's been cruising since she was about 15 months old and started taking like 2-3 steps on her own at about 16 months. Then about two weeks later, she started getting brave and taking more steps on her own! It was decided that if we put her in shoes, it should help her toe dragging. Well, the problem was putting her in shoes! She HATED them! Then we went to the zoo for Labor Day. We put her shoes on her and she found out that she can WALK by holding someone's hand and she can go where SHE wants to. So now, she has been very good about putting shoes on when we go out. She LOVES her shoes now. And we even got her a pair of Mary Janes and she LOVES her "pretty shoes." She now will get up and walk all over the house. She's walked from one side to the other by herself!

Then, on Saturday, Princess didn't want to eat lunch. So MeMe suggested that she sit at the playschool table. So we tried it.

Later that day, MeMe and Pops went out and found Princess a toddler bed. It was a Minnie Mouse one but we decided not to put the Minnie Mouse stickers on it. Pops had to put it together and of course Princess had to help.

Once we got her "big girl" bed together, she had to sit on it. She got a pillow, a Doc McStuffins pillow case, a Doc McStuffins doll (that is about as big as she is!), a butterfly blankie, and a new butterfly sheet for her bed.

Later that night, we started a new routine: bath (if needed), jammies, story, bottle, and then bed. So far she has spent the past 2 nights in her bed. Of course, she doesn't want to sleep on the pillow and instead sleeps at the foot of the bed, so she has fallen out a lot. We're going to put pillows down tonight. Last night, we put a baby gate up at the door because the night before, the dogs kept coming in to sniff at her. Hopefully by her IFSP, she'll be sleeping in her "big girl" bed by herself and not falling out of it.

Week in Review: First Week.

So this past week was our first week of school. I had wanted to start back when the local schools started, but things just weren't to be. Instead, I cut myself some slack, did some more research and decided to start the week before Labor Day.

Being Little Man is "technically" in preschool now, I still fall under the "not legally homeschooling" category. There are no regulations about preschool (yet). So we're doing some random things here and there to just keep him learning, but not really focusing on any grade or curriculum. (Here are our Curriculum Choices.) Since he's not really going to preschool this year, I felt left out of the all the "first day of..." photos that all my friends were posting on Facebook. So I snapped this one of him on the first day of his Tot Time class at the rec center.

This week, I had planned a four day week, being Little Man had an appointment on Monday. It didn't wind up working out to be a four day week. Instead, we took a field trip on Friday!

So on Tuesday, I helped Little Man set up his Interactive Notebooks.

The ones that didn't have Expectations in them got them glued in. We also glued in the spelling list for the week. The spelling isn't so much about learning to spell the words as it is practicing his writing.

We also read "Pete the Cat: I Love my White Shoes." And then I had him do some writing to go with it!

It says "I love my blue shoes."

That was pretty much it for Tuesday. I wanted to ease into school.

The next day we went through just about everything. One of the things Little Man liked doing was the dot sticker page for spelling.

For math, we did a "math about me" page and glued into his notebook. He also worked on writing letter L and number 1. (I'm going out of order for the letters and focusing on formation of them. This way he has some success at first doing "easy letters.") We also talked about "The Three Little Pigs." We'd already read it, so he got to pick what he would make his house out of and write a sentence and draw a picture. It was a shared pen writing. We did science, which we are finishing the five senses. This week was the sense of smell. We also read from the Bible.

On Thursday, things were pretty much the same. We did counting by 5s in his math journal. I got this page idea from: Miss Van Maren's Fantastic First Grade

He wrote letter T and number 1. (We'll focus on one number a week.) He wrote his spelling words in capital letters. We read "The Three Bears" and he wrote that he didn't like oatmeal. Science was good vs. bad smells and Bible reading. Next week, we are introducing the review pages!

We had planned to finish the week on Friday, but being MeMe was off of work, she wanted to take the kids to the zoo. So we had a field trip to the zoo! (Blog entry forthcoming!) And one other thing we did, was during the week, we received a package from Great Grammy. So I had Little Man write her a thank you note!

So what was Princess doing while I was teaching Little Man? Well, with a little help from MeMe, we put together some Discover Bins for her. These are like the prelude to tot trays. In them, we have different things: post its, silk leaves, craft sticks, pom poms, books, just things for her to explore.

So far, they are keeping her busy. But I don't know for how long.