Missing Treatment

Well, it turns out that Sonya will NOT be getting her infusion this week. The last time we went for her PAM infusion it was absolutely awful! As I'm sure you all remember, it took hours to get her IV placed and she had 3 blown out veins along the way. Well, apparently she was overdosed the last time as well and that is why she can not receive an infusion now. Sonya receives a PAM infusion every 8 weeks and receives the 8 week dose. Last visit she was given the 16 week dose, double the amount of what she should have received! I don't know how this all happened and our doctors apologized profusely. As of now Sonya is not showing any ill side effects from this overdose (extra fracturing, reactions) and most likely she will be just fine given that the infusion amounts are measured over a years time... so there is room for correction. We will be going back in 5 weeks for her next infusion and her doctors will modify her dose amount to balance out the yearly dose. Her doctors do not think that she will make it another 8 weeks without another infusion as her bone turnover is faster than that of a 4 year old (who typically receives the 16 week infusion). Her total PAM for the year will be more than what she is supposed to get at this age regardless of the modifications to the amount that she receives at future appointments. This can be troublesome because too much PAM can cause the bones to become hyper dense (more brittle) causing them to break more often, but we don't feel that she has been overdosed to that extent. Sonya will be more vulnerable to fracture during the next 5 weeks however because nobody knows for certain how fast her bone turnover is and how fast the drug will run out of her system. Bummer that all of this happened, because before we found out of her overdose, the IV team placed her IV on the first try, fairly easily and with no complications. Uggghhhh!!!! Well, at least we know that the port surgery isn't as likely to take place just yet!

On top of finding out that the IV issue is not a huge problem right now, two more good things came out of this appointment! I talked to her doctors about not being able to get a hold of our PT recently and they have told me that they would handle it and try to set up an appointment ASAP for us so that Sonya can get her bilateral clam shell braces for her lower legs and her pediatric walker! She has been cruising furniture non-stop and climbing everything in sight! The braces will give her more support on her 70 degree bowed tibias and the walker will get her more interested in walking all about while providing the necessary support! I can't wait to see her in motion! She has also been attempting to stand up in the middle of the room, but so far just keeps falling down.... very scary for me to watch, but at the same time I have to let her go. She'll never fully enjoy life if I hover over her like a crazed, worried, overprotective mom. Then we were told that there is a little girl named Evelyn who is 2 years old and has OI and guess where she lives??? Seriously, 10 minutes away from us!!!! The doctors are going to try to contact her family to see if they would like to have contact with us! Maybe Sonya will have a playmate who understands how to play gently! I'm so excited! I hope it works out!

Here is that picture I promised you all of Sonya content with her pumpkins new look! She thought he was cute with his smile!

In other news.... I became an Aunt again, but for the first time on my side of the family!!!! Taylor Elizabeth Hutton was born on November 1st 2009 at 3:26pm, weighing in at 9 lbs and 9 oz and measuring 22 1/2 inches long!

She is absolutely beautiful and perfect in every way! Congratulations to my sister Meghan and my brother-in-law Shay!!!!!

So sweet!!!!

Coming home!

Happy Halloween!!!

HAPPY HALLOWEEN EVERYONE!!!

Here's a little.... ummmm ok a big recap of what we have been up too! I'll do it in pictures, less words... enjoy!!!

Snow White Sonya and her poison apple!

Belle Beauty Zoe!

Ariel Little Mermaid Akela!

"She's got legs! Human legs!!!"

My 3 pretty princesses!

Carving time!

Akela checking out the insides of her pumpkin!

Zoe and her pumpkin!

"Ewwww!!! Guts!!!"

Separating the guts and seeds.

I was not expecting this reaction from Sonya... She was really upset about her pumpkins insides.

You have got to be kidding me! That's what is inside of my cute pumpkin??!!

Oh the horror, THE HORRORRRRR!!!!

Daddy please put it BACKKKK!!!!

That's just awful!!!

Don't worry, she eventually got over it and dug in!

Daddy and the girls gutting the pumpkins so mommy can carve them.

Zoe and Akela admiring mommy's carvings. Sonya was so tired, she went to bed and missed the results... will post more pictures after trick or treat tonight, hopefully I'll get a good one of her with the lit up jack-o-lanterns!

HAPPY HALLOWEEN EVERYONE!!!

"Building Self-esteem in Children / Teens with OI"

I wanted to share with you all a webcast that I watched last night "Building Self-esteem in Children/Teens with OI". The webcast has been saved and can be seen at the link below. It is approximately an hour long discussion given by Kara Ayers whom herself has type 5 OI. Kara is very informative on the topic and also has her own website where she discusses the broad spectrum of disability issues. Currently Kara is pursuing her PhD in Clinical Psychology with an emphasis on children with chronic illness and disabilities, specifically children with OI. She is finishing her dissertation on the psycho-social effects of growing up with OI. For the POLP reading this post, some of these topics can be very helpful for you and your LP as well! Not all of this discussion is necessarily directed to just children and adolescence living with OI, but can be applied to many other children with varying abilities who spend a considerable amount of time around hospitals and whom have many different appointments with varying specialists frequently.

In Kara's webcast she discussed some helpful children's books. My mom is planning on getting these books for Sonya for Christmas. I will post a review on these books with my thoughts in a future post!

Kara's Website : http://www.karaayers.com

Link to Webcast : http://www.ustream.tv/channel/building-self-esteem-in-kids-with-oi

Enjoy!!!

The Gummy Bear Song - Long English Version

Warning: This video will have your kids hooked! Sonya is absolutely in love with this song! I have it stuck in my head since she requests viewing it on youtube at least 5 times a day! I have to tell her that he went night night!

Black Apple Doll

I made this cute doll for Sonya last night out of some scrap fabric in just under an hour and presented it to her in the morning when she woke up! She loves her new dolly! For more info on where to find the free tutorial and pattern head over to my craft blog at Testing 123! If you like, I have a button to add to your blog!

Sonya making her new dolly dance!

Giving dolly a kiss!

Checking out her scarf!

Of course she had to taste her button too! Don't worry it's sewed on super tight!

Dolly

"Dolly" hanging out with "bun-bun"(bunny), "rrrarrr" (lion) and "pairy how" (fairy house).

Napping.... ZZzzzzz....

I think I sewed her arms on a little funny. She looks like she is in a permanent ballet position! I'll have to give this tutorial another shot and make dolly a friend or two! Now my older girls want one too!