Test Day!

Max got to drink his contrast by bottle so that we could be precise in our measurements. 
Max thought it was fun to pretend to be a baby and drink out of a bottle.

Max made it through a long day of tests. We were a little worried when we started off the day with many tears because he wasn't allowed to eat or drink and then we had a hard time getting his magic cream and tickle tape on him.  He ran through the house grabbing his port and yelling "don't take my blood" which I am sure was just a little anxiety over going to the hospital today and not understanding what was going to happen, but then the rest of the day went very smoothly.

We managed to get an MRI, CT Scan, and a spinal tap all done successfully.  He was under anesthesia for a lot longer than he is used to but he did very well this time (so far).  He got some good pain killers for the lumbar puncture which have made him in a particularly good mood. Overall he had to fast for almost 24 hours from all food and liquids so I bet tomorrow will be spent catching up on lost time.  I have had two specialists working on calling around to different doctors around the nation to find a lab that can analyze Max's Cerebral Spinal Fluid (CSF) for the last two weeks, as of this morning they were both still working on it, unfortunatly Children's doesn't have the lab equipment needed to run certain tests and doesn't have the specialists who are trained to read the results.  We are hoping that we can find both of these things soon before the CSF goes bad so that we don't have to redo this test or even worse travel to another state to redo this test. They were able to retrieve two different samples one of which got sent directly to the clinical trial that Max is a part of.  Stay tuned for the results from the other tests, hopefully this week. 



This was the view from our hospital room today. 
Do you think God could be any clearer?



Make-A-Wish Care Package

Max got a really fun care package from Make-A-Wish this weekend.  As you can see he is loving it!

Sleeping with Lightsabers

Monsters be afraid...

10th Infusion - IVIG - Complications

We had a big day today.  We managed to squeeze 7 appointments with providers, a 90 minute speech test and a 5 hour infusion today!  Whew!

Good News is that we  might not need to do another infusion for awhile, bad news is that he developed a reaction from this round.  After two rough days at home we ended up back in the ER trying to figure out what kind of reaction he was having. He was very tired, and was in screaming pain which he could clearly tell us was affecting his head.  Turns out he contracted aseptic meningitis from this particular batch of IVIG. I guess this can happen in 17% of patients that receive this infusion. It sounds much scarier than it is and luckily after 5 days he was back to his normal self.  I guess the reaction can build up after receiving infusions for awhile and our doctors are doing more research and contacting other doctors around the nation to decide what our next step should be.  In reaching out to other parents in our support group it sounds like there are many other OMS kids who struggle with this reaction. 

For those of you who like to know more details you can read more about this reaction here: http://www.annals.org/content/121/4/259.full.pdf                        

Pinkalicious - Just Think Pink



Madison's favorite book is Pinkalicious, about a little girl who eats one too many pink cupcakes and wakes up pink and has to eat green food in order to reverse it.  We read this book at least once a day and when it was time to dress up for halloween our first pick was to be none other than Pinkalicious herself.  However on the day before Halloween Madison wokeup with a body full of hives.  She must have eaten or come in contact with something that she is allergic to however the only thing she ate the night before was chicken, broccoli, and pasta, and a pink cupcake at grandma's house (all staples around our house).  We woke up on Halloween and after 24 hours of Benedryl her whole body was even more covered with hives, she was indeed pink.  I took her to her pediatrician and he confirmed that she was allergic to something and gave her a little stronger medication to try to cure her "pinkititis".  Since she wasn't uncomfortable we decided to hold off day giving her medicine so that she could play the part of her favorite girl that night. 



 It just so happened that Pinkalicious the musical made its debut in Tacoma this weekend. We enjoyed a cute show in a theatre full of little girls dressed all in pink. 

Thank You Costco

Dear Costco,
Thank you for having carts with large seats for kids.  It makes our weekly costco trips so much easier....