Calls

This morning the children's hospital called asking that I bring Anna back in for another blood draw. Apparently they outsourced some of Anna's bloodwork from the February MRI visit and they are missing a cortisol level. After our visit with the geneticist last week, I called the endocrinologist twice to find out what the "highly abnormal" blood test results were and they kept saying they were waiting on one more test to come back. I guess it was never drawn or the results were lost, I'm not sure. So I have to make Anna fast tomorrow morning and take her in for another blood draw. Ugh, poor thing. She gets nearly hysterical and I hate putting her through that. Well at least we can get the genetic blood tests done now instead of in April... I have the orders for the Fragile X DNA test and the fibrillin DNA test so I'll take those in with me. I wonder how long we're going to have to wait on the cortisol and the genetic results. The endo doesn't want to talk to me until she has "the whole picture"...

I also received a call this afternoon from the assistant principal at the elementary school. Anna had a meltdown in math resource and Mrs. C had to intervene. When she got to the classroom, Anna was lying prone on the floor and there were books and papers strewn about the room. The other students had to be removed. Anna refused to go to the processing room, so Mrs. C took her to the office. She had to have a timeout but kept having to have it restarted for getting up. She kicked Mrs. C 5 times in the shin, hard enough to bruise. She was calling the staff and students "stupid" and being mean, belligerent, non-compliant, and hostile. Sigh. What is going on with her?

New releases today from By Becca and AnnaBV Designs!

First up is a gorgeous new kit from By Becca at ScrapMatters called Something Beautiful After the Rain. Spring approaches softly and with it brings the cleansing rains that leave the world awash in sparkling clean colors. Everything is fresh and new as the world awakes. Something Beautiful After the Rain captures the world in those moments of refreshment -- clear clean blues, fresh bright greens and touches of bright yellows and pinks, and this kit also includes 2 full alphas.

Something Beautiful After the Rain


My Layouts




Next, AnnaBV Designs is releasing this adorable kit, Spring Cleaning, today at ScrapOrchard. It's a fun kit filled with cleaning elements, clothesline, flowers, and much more. Get ready to roll up your sleeves and scrap some pictures of spring cleaning!

Spring Cleaning


My Layout


Thanks for looking!

Pediatric geneticist visit

I got a call yesterday reminding me of a visit with the geneticist for Anna this morning. Ugh! I did NOT have that appointment on my calendar so I'm glad they called. I don't know if you all remember but before Anna's MRI and ultrasound last month, I tried and tried and tried to get into to see the geneticist before the procedure. I thought these new symptoms might give Dr. I another clue as to what is going on with my baby girl. We did get an appointment set up only to have the doctor cancel it due to illness so we did not get to see her prior to the MRI. I totally forgot that we had rescheduled it for today.

Anyway, we get there at 9:00 a.m., right on time. At 9:35, I poked my nose out of the exam room scanning for a nurse wanting an ETA from the doc. Waiting that long with Anna is a chore! Nothing from the nurse. At 9:45, I went out again and asked again a little nastier... everyone scurried about and said she'd be in within the next few minutes and that she was having computer problems. Grrr. I threatened that if she wasn't in by 10, I would leave. I HATE that doctors make you wait that long. How hard would it have been to come in at 9:15 and say, "Dr. I is running late/having computer problems/blah blah blah, would you like to wait or reschedule?" Seriously!!!

So I was boiling when she appeared at 9:53. She apologized for the delay, then immediately scooted over to Anna and starting engaging in the nicest conversation with her. I felt my anger melting away as I saw a full page of handwritten notes on the doc's notepad and saw how fully she gave Anna her attention. Within just a few minutes, I was back in find-a-diagnosis mode... it was nearly three years ago when we last saw Dr. I. She has really prepared for our appointment by reviewing Anna's history and recent tests (granted, it was in the 50 minutes we were waiting, but I was still pleased).

It's a very emotional process to look for a diagnosis. Years ago, it was a much stronger drive to find an answer and when test after test came back normal, I began giving up hope that we'd ever find an answer. Well, that door has been opened again. Wouldn't it be something to get a real diagnosis at 9 years of age?

The doc mentioned that Anna's MRI and ultrasound results from last month were normal but her blood work was highly abnormal. Then she proceeded to say that the endo would need to go over all of that with us. Ugh. You bet I was on the phone to the endo's office as soon as I left there, but I didn't hear back from them yet. I'm glad her MRI and ultrasound were normal though, that's really good. I wish they would have called already.

Dr. I wants to look at Fragile X. I thought Anna was tested for this as a toddler, but she wants to do the full DNA sequencing for Fragile X. When I looked at the checklist of symptoms... well, my jaw hit the floor. Anna has nearly every one of these. Sigh.

We also talked a long time about connective tissue disease. Dr. I feels that Anna actually has two genetic syndromes, one connective tissue related and the other causing the seizures, PDD-NOS, anxiety, and cognitive challenges. My mom's mom (now deceased), my mom, and myself have a genetic connective tissue disease. The last geneticist I saw said that I have five of the six markers for Ehler-Danlos Syndrome. Anna is much more affected than I am. The doc noticed that Anna's joint laxity has gotten much worse over the last three years and that she has developed kyphosis (like a hunch in the upper shoulders). So she is referring us to an orthopedic doc. She also wants us to see a cardiologist to look for connective tissue issues in her heart (I have a mitral valve prolapse, so we need to see if Anna does too). During the physical exam, Dr. I is really exclaiming over Anna's flexible elbows, hands, wrists, and fingers and Anna says, "Is that good?" to which Dr. I replies, "No honey, it's really not." It was very sweetly said, but humbling too.

The 2-hour visit exhausted me and Anna... I'm anxious about the blood test results so as soon as I get them, I'll let everyone know. Dr. I was pretty sure the endo would be ordering more blood work soon, so we'll be getting the Fragile X DNA test and fibrillin (connective tissue) DNA test added onto that blood draw. Anna has such a hard journey... there are moments that really hit me and today was one of them.

On a happy note, I got to take Anna out to lunch at her favorite restaurant before returning to school. How cute is this girl, huh?

New Release by AnnaBV Designs

I'm a couple of days late posting this new release at ScrapOrchard because I've been sick, but I'm so excited to share AnnaBV's newest kit, Fairy Spring! Isn't it so cute? I love the hand-drawn fairy, so whimsical! I used Autumn's new baby, Liam, as the subject for this layout, "Spring Dreams." There is also a coordinating alpha pack.

Fairy Spring


Fairy Spring Alpha


My Layout


Thanks for looking!

New Releases by AnnaBV Designs

I have two very special layouts to share with you today! First is a new kit called Hoppy Easter by AnnaBV Designs which is being released today at ScrapOrchard. Filled with handdrawn bunnies and yummy jelly beans, it's the perfect Easter kit. It also has coordinating alpha and wordart packs. My layout for this kit is very personal and bittersweet... I decided to scrap a memory from when Anna was 2 years old.

Hoppy Easter


Hoppy Easter Alpha


Hoppy Easter Wordart


My Layout


The journaling reads:
You were two years old and we were
celebrating Easter with the neighborhood
playgroup. These get-togethers were always
stressful for you and this day was no
different. You clung to me, so scared, not
wanting to join the kids. By the time we
got to the hunting grounds, all the eggs
were gone. My eyes pricked with tears...
tears that you had missed out, tears that
something that was supposed to be fun
caused so much anxiety. Some of the other
moms made their kids drop a few eggs and
you happily picked them up after the excited
children wandered off.
My heart ached for days.

It is difficult to look back at old pictures. At that time, we didn't yet know that Anna had autism and her first seizure was still a year into the future. Social situations caused so much panic in her... looking back, it was one of the signs of her autism; to me, it didn't resonate as any more than sensory overload at the time.

The second kit is called Wonderland. AnnaBV has teamed up with Jennifer Barrette to bring this wonderful kit full of Alice in Wonderland characters and elements. I had so much fun scrapping with this kit that I made everyone a free 12x12, 300 ppi quickpage based on my layout! The download link is at the end of the post.

Wonderland


My Layout


My Quickpage

DOWNLOAD

Since this is my very first quickpage, I would be so so grateful for comments and feedback. Even just a quick thank you would be really appreciated!

Thanks for looking and downloading!

Are you serious?

I have a YouTube channel that I set up 4 years ago when Anna was first diagnosed with PDD-NOS. I didn't know anything about this type of autism and looking back, I can now see signs all along that I didn't realize were related to autism. So I made a series of short videos about Anna, about her particular symptoms, and posted them. My purpose was to reach out to other parents like us, ones who wondered if they were alone. For the most part, the videos have been well-received and I have gotten many nice stories and comments from other parents and even adults living with autism. Every once in while, though, I get a head-scratcher comment like this one I got today...

My son was diagnosed as PDD_NOS when he was 2 but I'm beginning to wonder what the Dr. would say if she met him now. If this little girl is standard for PDD_NOS then my son must be classic autism. I would give anything if he could ask a question even if it was the same 50 times. He's almost 8 and has never even said his own name. You are sooo lucky that she is barely affected at all.

Are you serious? Barely affected at all? My first inclination was to fire back a snarky note (which in fact, I did, then deleted it about 10 minutes later). How can another mother say something like this, especially based on a 2-minute video clip taken 4 years ago? I can totally relate to the "I would give anything..." comment. I would give anything for Anna never to experience another seizure, ever. I would give anything for Anna to not be so scared of every social interaction every day, to the point that her anxiety makes her nearly nonfunctioning and she has to take medication now. I would give anything for Anna to not have to take yet another medication that keeps her from raging against her teachers and peers. I could go on and on.

But this is the part that really gets me... "You are sooo lucky that she is barely affected at all."

Barely affected.

Oh that's right. That's why she is 9 and in the 2nd grade instead of 3rd. That is why she has IEP goals in reading, writing, math, social studies, science, social skills, PE, OT, and ST. That is why she has a tested IQ between 57-65. That is why she has no real friends and sometimes the neighborhood kids hide when they see us coming. That's why her little brother already understands that he is to watch out for her even though he's only 5. That's why she had to have another MRI (I think it was her 4th or 5th?) a couple of weeks ago. That's why she still wears a pullup to bed and leaks through nearly every night because her brain doesn't wake her up when she urinates.

Yeah, you're right, lady... she's barely affected at all and I am "sooo" lucky.

The thing, I do realize how lucky we are in many ways. And I feel lucky to be Anna's mom, I really do. But in no way do I feel like Anna's life is any easier than anyone else's. She is the one who struggles, I can only watch and help.

ShamROCKZ by AnnaBV Designs

Anna has a new kit being released today at ScrapOrchard called "ShamROCKZ". Perfect for scrapping your Irish heritage, celebrating St. Patrick's Day, or even just loving your lucky life, ShamROCKZ can meet your needs. There is a coordinating alpha that has three different styles and a set of quickpages that are free with purchase for a limited time.

ShamROCKZ


ShamROCKZ Alpha


ShamROCKZ Quickpages


My layout


Thanks for looking!

Happy 9th Birthday to my sweet Booski, Anna!

Today my baby girl turns nine years old. To be honest, there were times between ages three and five where I didn't think she'd survive this long. She is such a fighter and has gotten so much stronger. I truly love her with a part of me I didn't know existed. There is a fierce protectiveness, a pride when she accomplishes something she's been working so hard at, a wonder and joy at the everyday seen in a new way... she has made me grow as a parent and a person. And I am so thankful.

Happy Birthday, Anna! Nine things that I love about you are:
1. I love the way you call a cheeseburger a "cheese-hamburger" and that it is your favorite food.
2. I love the way you laugh at America's Funniest Home Videos like it's brand new even when you've seen an episode a dozen times.
3. I love the way you love babies, the same way I do.
4. I love the way you get concerned about your sister or brother if they don't feel well.
5. I love funny words (a game we play where we substitute potty words for real words in common songs).
6. I love waking up to feel you spooned up against me even though I put a pillow in between us.*
7. I love that you trust me so completely that when I ask you to do something that is scary to you, you do it anyway and are brave about it.
8. I love hearing you read a book, working so so hard to make sense of the words, and figuring it out.
9. I love YOU, for who you are.

*I sleep with Anna because of her seizures. She doesn't have them frequently, but they often occur in the middle of the night with no warning and she turns to her right and ends up with her face in a pillow. To avoid the risk of suffocation, I sleep with her.

As a newborn... oy, look at that jaundice!


Now


Thanks for reading!

February 2010 Siggies Slideshow

Here are the siggies I made in February!

Thanks for looking!