July 2009

This has week was filled with doctors visits and medical issue for our little Sophie girl.

The first part of the week was her yearly check in the neurologist who manages her seizure disorder.  Thankfully our check ups in Palo Alto have really, really minimized so much so that Aaron and I were a little out of practice with juggling the childcare, coordinating the drive time etc.   However, it all comes back pretty quickly.  Since my office is closer to the clinic and Aaron’s job allows him to set his own schedule a bit- we decided it would be best to have Aaron bring Sophie to be at work, I’d take her to her appointment and then he’d pick her back up at Apple from me.  Sophie especially loves the part where she gets to hang out at Apple for a bit.  Over the years she’s gotten to know several of my colleagues pretty well and not a distraction when she’s there.  And of course Apple includes a visit with “aunt Jamie” who has always been especially close to both twins and someone they both adore.

For the most part the appointment with their neurologist went well.   Nothing new and things were pretty much the same.  She still shows a slight weakness on her left hand side and while it’s something we need to be aware of  – the doctor doesn’t think it’s significant to warrant occupational therapy at this time.  I know this guy is suppose to be really good and I’m sure he is but once again I found myself why he went into pediatrics.   He ZERO connection with children and not much with parents either.   I’m not sure if he thinks we haven’t realized our challenges or what but went on and on with me that I needed to be  “prepared” that Sophie would probably have learning delays as she got to be school age.   I so could’ve done without the sermon.

Aaron and I are definitely aware of the possible future challenges she may have but other than continuing to work with her everyday and getting her special services when it’s recommended- I don’t know what else I should do.  I know I can be pretty tough on doctors but I do listen.  I just want the input to useful and actionable.   Sitting around worrying that she may have future learning disabilities is about as useful to me as worrying I’m never going to get taller than 5’. 2 What’s the point?  It won’t change anything.

Sophie’s struggle with joint pain continues and seems to get worse everyday.  Our pediatrician has upped her dosage of Motrin but its not really working and getting her into a specialist has been the top priority.   But then there is the schedule……

I called up to Packard and begged and I do mean BEGGED the scheduler to get her in as soon as possible.  So then I was told while I couldn’t do anything as a parent, our pediatrician could- if they had a “doctor” to “doctor” discussion.  So for days now, our pediatrician has been calling Packard multiple times a day – trying to get Sophie seen.  But…. It turns out the computer won’t accept patients when there is no avaiilable appointment time.   That’s a really hard message to give to a 4 year old who can barley move and cries for hours at night due to the pain.

Ah but the power of persistence.  Our pediatrician was so annoyed by the whole thing and our inability to get treatment that she finally directed us to go to the emergency room – in hopes that Stanford would page the pediatric rheumatologist on call and we’d finally get some relied for Sophie. My big sister who works in insurance was less than thrilled with this plan when I shared it with her but at some point- you just gotta do what you gotta do.. Our pediatrician faxed our labs and called them and told them to expect us. So off we went on Saturday afternoon (after yet another night of no sleep since Sophie cried most of Friday night due to the pain).

It was a long afternoon there but they finally gave her morphine and it seemed to help a bit.  I told the very nice young medical student what I was after (the pediatrician rheumatologist and off he went to try and get it to happen.  While we couldn’t get the rheumatologist to come over the emergency room as we hoped, the very persistent medical student was able to convince the doctor to see us on Monday (apparently the medical student paged him 5 times and the doctor said he’d see us during his lunch hour on Monday if they medical student would stop paging him).  Like I said… whatever works.  They also took a ton of x-rays at the request of rheumatologist and additional blood work in hopes that we would’ve have to start on Monday with a ton of tests- but could look towards a treatment plan.  The rheumatologist also prescribed stronger meds (big surprise- he said Motrin totally wouldn’t alleviate her pain) so now she’s just had her first dose of something stronger that will hopefully help the inflammation.

Poor Trent all this has been pretty tough on him too.  He so wants to play (as he’s a very, very active 4 year old) and to have his sister just want to lie around is quite frustrating for him.  Thank goodness for Charles next door.  He’s Trent’s favorite person in the whole world and is more than happy to help entertain Trent.  We are so grateful for Charles and the wonderful people who help care for our children.

Hopefully tonight will bring a much-needed full night of rest for the entire Keene household.

The first part of the week was me calling Packard to beg for an earlier appointment rheumatoid arthritis clinic

And so it goes..  It’s so hard to believe it’s July. Time just seems to speed by.

Last week we went to Mammoth for the Keene family reunion.  What a great time!  75 Keene’s all in one place.    The weather was perfect and the accommodations were awesome with most of the family (Aaron’s immediate) staying together.   His sister and her family were just 5 minutes down the road, which allowed for tons of immediate family bonding and fun. The Keene family (the 75 clan) is like nothing you’ve ever met.  Everyone is nice, happy and makes you feel so welcome.  All that with the incredible Mammoth Mountain scenery made for an incredible weekend.

Sophie’s hydrocephalus typically doesn’t favor altitude and unfortunately this trip was no different.  She tried so hard but her body definitely told her what it needed and that was SLEEP.  And lots of it.  Trent on the other hand had the time of his life with his cousins. Hours, and hours of play.   You have never seen a happier guy.   We are truly blessed with an amazing family!

I can’t believe it’s already July.  For the last several weeks our Sophie girl has complained of foot pain and on some days she has been limping.   Aaron and I have had many discussions about what to do including what type of doctor to take her to (orthopedics, etc) and so whatever reason I thought I’d be efficient and take her to urgent care last Sunday night.  I figure since it was probably some sort of sprain we could just have her examined, get an x-ray and be done with it.  I’m not sure what’s wrong with me.  Why I thought that was a good idea is beyond me.  Pretty much there is 4 hours and $20 I’ll never get back- and Sophie was still in pain.

So off we went to our pediatrician on Monday.  They are so great.  We always come in with challenges (the doctor laughed and said when she heard we were coming all she could think- was simple normal for once) Unfortunately it wasn’t.   After being looked at by two doctors in the practice and we were sent off for a whole series of blood tests. We will still have one more advance test to come back next week (it had to be sent our to a more sophisticated lab) but the preliminary diagnosis appears to be juvenile rheumatoid arthritis.   Thank goodness for our pediatric practice.  They’re the first ones to recommend that something is beyond them and reach out for a specialist.  So next week we’ll be heading up to Packard to a new clinic.  Poor Sophie though, several of her joint are now swollen and she’s in a lot of pain. We’ve been giving her children’s Motrin every 4 hours but it’s beginning to help less and less.

For whatever reason this is harder than so many of the other things she’s gone through.  I guess it’s because we kind of thought we had everything in maintenance mode and now- it’s one more thing.    And nothing can beat the feeling of “how is it that she just can’t get a break?”

In spite of this all, we are so thankful for both of them. Trent is such a little man now- getting himself dressed, expressing himself and trying to be a big boy (although he still loves his blankie, to be held and his thumb).  And Sophie, well she’s Sophie.  She’ll just keep at it.