Super Quick Update

Alex is on day 8 of recovery today.  It was also her first day back to school.  I let her sleep in a bit since she has been getting up at about 9 am most days.  I also went in and talked to the school nurse about her restrictions and that if she got too tired or in pain to just call me. She has texted me to tell me she is tired but no pain was mentioned. She really did not want to go this morning but I expected that.  I wouldn't want to go back either.  She has been in heaven (and yes pain) laying in bed watching tv, eating yummy things and getting lots of extra love and attention. Its hard to give that up for school and homework!!

So, now that this is behind us we will be facing her next challenge that unfortunately will never go away.  Her Psoriatic Arthritis.  There is a lot of the unknown ahead of us but we will get through it just like we did this. 

I am still looking to connect with other families with children living with PA.  I have several great friends that have kids with JRA and have received some great information from them.  It would be nice to kinda know what to expect for her future.  So, if anyone is reading this that has a child with PA or was diagnosed as a teen with PA please contact me.

One Week Until Surgery!

So, in one week my baby will be wheeled into an operating room and have her tonsils removed.  I know, so dramatic but I am seriously nervous about it.  I am not worried about the actual procedure but the recovery.  I have heard that it is pretty painful! It's hard to really prepare a child for that.  You don't want to scare them yet you don't want them to feel betrayed either! I have explained it to her somewhat but will tell her more as it gets closer.  She is just looking forward to laying around and watching tv for 10 days!

My other big concern is school!  I have contacted all of her teachers telling them that she will be out of school for at least one week but have been reading online that recovery can be much longer.  According to her doctor she can go back when ever she feels up to it.  I know that some of her teachers are getting work together for her that we will do at home when she feels up to it. 

My last stress is that I will be alone to care for Alex.  Ben is leaving the morning after her surgery day for a 5 day business trip to Washington D.C. I am sure it will be fine but it will be hard not having any extra support.  I will be heading to the store before her surgery to really stock up on all of our needs. We have two other kids who are in elementary school that I will have to get to/from school and help with homework, feed, bathe etc.  

Otherwise Alex is doing fine.  Little aches and pains here and there that I have no idea if they are related to her arthritis or not.  I just keep taking notes of it and will share it all with the doctor next month. 

Doctors and Tonsils and IV's Oh My!!!

Sorry it's been a few days since my last post.  Up until yesterday not much was going on. 

Yesterday we had to drive about an hour down to Rady's Childrens Hospital in San Diego for two appointments.  First we met with the otolaryngology doctor.  This is an ear nose throat doctor who will be doing Alex's tonsil removal surgery.  The interesting thing we learned is that the doctor had heard about some trial studies done that show children with Psoriatic Arthritis do better after they have their tonsils removed.  I explained to him that she has needed them out for over a year due to constantly getting tonsilitis/strep throat and that it had nothing to do with her PA.  I will have to look into the research though. 

Her surgery is scheduled for September 28th.  She is  excited about it because she is looking forward to no school and all the ice cream she wants!  I don't have the heart to tell her that I read in her prep paper work that ice cream is not that good for her because of the dairy and it sticking around her throat.  She loves smoothies and jello so we will try and go with those! I don't really know what her recovery will be like.  The doctor said it will feel like a bad case of strep without the fever making your body hurt too.  She can go back to school as soon as she is off the pain meds at which point she will probably feel better anyway. Best guess in 5-10 days.

Her next appointment was the MRI.  They were sooo nice!  Because MRI's take so long you are often the only patient waiting.  We had a private waiting area with a tv which made Alex happy.  It was good for me since we were 20 minutes early!  Next they brought us into this room with three nurses!  Not one, not two but three.  All being so so sweet to Alex and asking her about school and what the MRI was all about.   Next I notice one of the nurses is getting a needle out and I am thinking "what the H"....turns out she needed to have an IV to inject contrast fluid for the MRI.  Once Alex heard this she turned white and started shaking!  They put her in this cool recliner with special arms on it just for this purpose (putting in IV's).  They also gave her a warm blanket.  After she relaxed she did awesome.  They let me go in the room with her and gave me a pair of ear plugs since MRI's are sooooo loud!  She had to lay in a very awkward position on her stomach with one arm up above her head (superman) and the one with the IV straight down by her side.  They put these huge headphones on her that had a radio station playing in them which made laying with her head turned to the side even harder.   She looked so uncomfortable! The MRI took 50 minutes!  I could not belive it took so long.....I guess with the IV it takes longer. She did absolutley perfect and didn't move an inch the whole time!

We got out of there at 1:30 just in time to rush home to get Kiersten and Ryan (her sister and brother) from school.  But guess what...I got lost!  I have gps on my phone but my phone died (and hubby had the charger).  Needless to say I had to call the school and they had to wait in the office for about 15 minutes for me.  Major Fail! 

So here is what is next:
MRI results in 3 days
Tonsils out on the 28th
Eye doctor 10/4
Rheumatologist 10/5

Have you or your child had tonsils removed...if so please leave me a commnent on how it went, recovery time and what foods you suggest!  Thanks!