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!
7 comments:
Goodness - I'm so happy that Sonya is ok!! I'm glad that some good came out of the appointment and hopefully, Sonya will get PT, braces, and a pediatric walker soon! She is such a dare devil, and I can imagine that she'll be on the go in no time once she has the braces and walker!
I'm so excited for you guys - hopefully, you'll get to meet Evelyn soon, and Sonya can have playdates with someone that understands how to be gentle!
Congratulations on being an aunt again!! Congratulations to Meghan and Shay and the rest of your family too!! Taylor is beautiful!
Wow! Sonya sure has a lot to deal with! She is always smiling in every picture though! She is amazing! You must be a super strong person to keep your head during all of this. I'm really glad Lily's case isn't as bad as Sonya's. I don't know if I could do it.
-Mary
Glad that it appears taht Sonya isn't affected by the overdose...I can only begin to imagine what that discussion was like. Hopefully those braces and walker get here soon, she'll be all over the place!
WOW! You are so incredibly knowledgeable. I just am in awe of you. I am so happy that Sonya is showing no ill side effects from the overdosing of PAM! ARGH! Also how great to meet another family who lives so close. The girls can become lifelong friends! YAY!!!!!
I know you are nervous with her starting to walk and venturing but I think the walker will help put you at ease slightly. I constantly worry because Preston thinks he is an acrobat.
Congrats on becoming an aunt! Your niece is adorable-nice and healthy. She looks sooooo pretty and so alert for a little infant!
That's great about the new playmate. I hope that it works out. Nate has a friend that lives 10 minutes away and they are only 2 days apart in age. Congrats on the niece. She's beatuiful!
Congratulations Auntie! Taylor is precious and that dress she is wearing in the bottom picture is just beautiful! If she is lucky enough to get any of your girls' hand-me-downs, then she will be one very well-dressed little lady! What a bummer about the mix-up over the PAM...thank goodness it can be corrected. It must be so exciting thinking of the new equipment for Sonya...I can't wait to see pics of her cruising around with her walker!
The overdose is not permanent. Sonya is a trooper and will keep going no matter what. I would still push for the port even if they can get a vein today, they may not later. Sonya has enough issues and will be getting sticks her whole life so the least the doctors can do is give her a port to make it easier. Good luck with the braces, Sami's never had them though I wish she did for better walking.
Heather
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