TGIF (Thank God It's February)

February has finally arrived and I hope this month is a better one.  (Of course, Oliver did wake up with a terrible cold.)  I spoke with Waverly's pediatrician this evening.  Her blood tests came back and there wasn't anything alarming or able to give cause for her illness the past few weeks.  Her liver enzymes were elevated, but that is typical with MPS.  The other ones were elevated as confirmation that her body was fighting off something.  There are a few more tests pending.  Waverly has been fine the past few days.  This is what has been occurring though, sick for 48 hours and then fine for days until it strikes again.  I hope this last time was *the* last time.

Waverly had some hip x-rays taken today.  Both her PT and Physical Medicine doctor were concerned about her right hip turning in and causing her foot to turn in significantly.  I am awaiting a call or email from the physical med doc on what to do next.

Oliver had an appointment with Physical Medicine last week.  His left foot is beginning to turn in slightly.  It is noticeable, but the doctor felt he could go another 6 month without any intervention, i.e. AFOs/orthotics.  I was so happy to get that news.  The AFOs have been a huge help to Waverly, but I am simply not ready to see Oliver in them yet.  The PT and I will just have to continue to work on his ankles and range of motion.

Our other consideration is salivary glands.  Waverly drools a lot, especially since she is constantly chewing her necklace or tube.  The PM doc suggested we speak to our ENT about tying off or excising a few of her salivary glands in the bottom of her mouth.  She will still provide adequate saliva, but it will reduce the amount and help with choking.  She does tend to choke on it and it is happening more often during the night.  That scares me.  I wrote our ENT this afternoon to see if we could discuss this.  We are already talking about having her adenoids and tonsils removed.

Wow.  That was a lot of medical updating, but I wanted to let you know what has been going on in our lives.  These kids like to keep us busy with doctor appointments.

I have been incredibly down lately.  The cold weather, inability to have outdoor time, illnesses have all been factors.  But sometimes the heaviness of what we are facing seems too much to bear.  Seeing the changes in Oliver, no matter how subtle, are huge neon signs that he has Sanfilippo and it is rearing its ugly head.  I feel a bit lost.  We have been in VA for about 1.5 years and I still don't feel like this is "home".  We haven't found a group of friends or community.  Apartment living isn't conducive for meeting neighbors and forming relationships.  Returning to work or continuing education both seem near impossible at this stage with the kids.  One of them is constantly sick, has a therapy appointment, doctor appointment...I just don't know how I could have a structured schedule.

This isn't a "woe is me" post.  I am just trying to state how I am feeling in the moment.  And in the moment I am sad.  I am trying to figure out how to get my life back on track in a way that Sanflippo doesn't have so much control.  It dominates all parts of our lives and I don't want it to have such power over us.