Tuesday, November 8, 2011

More dr. updates.

Have you ever noticed how cute baby sneezes are?  Just as I was opening this window to write a new blog, PJ, swinging away, sneezed 3 cute baby sneezes.  So adorable.  His sneezes seem to come in rounds of three...a little characteristic of my little warrior.
Last Wednesday-Friday we were in Reno/San Fran for check ups and dr. visists (already?!).  Wednesday was spent (2 1/2 bloody hours!) at the pediatric nuerologists office meeting the dr. and becoming aquanted with him.  He seems like a smart man, but a little out-dated as far as requesting hard copies of PJ's head/hip ultrasounds rather than the disc that the ICN discharge coordinator so politely prepared for him.  I know that doesn't mean he can't do his job, but it definitely dated the doc.  He was very nice and he seems to really be interested in PJ and his condition and also very proactive as far as ordering MRI's and x-rays.  We go down to Reno on Friday for an MRI of PJ's brain and spine and x-rays of his spine.  Please pray that PJ would take the anesethia well and that it would all go smoothly.
After that appt. we rushed out of there because there was a wind advisory for the day and we had to make it over Donner pass still to get to San Fran.  Why is it that when you have to go somewhere there the weather can't just be nice?  Of course there was a wind advisory!  Why not make things more interesting?!  Along with that is time to cath/feed PJ which totals around an hour.  So we felt a little rushed although we had no more deadlines for the rest of the day.  We finally made it to San Fran around 8pm.  Driving our Tundra in San Fran is no easy feet.  We had multiple near heart attacks! ha!  At least I did.  I thought I would give Mitch a break from driving so I drove the last bit and I am not proud to say that I think I have a bit of road rage!  I think Mitch should do the driving from now on!  I think he would agree with me on that one.
Thursday we had a head ultrasound at 11:30.  PJ did so good just laying there...getting his hair covered with ultrasound goop.  It's funny, he kept getting compliments on his hair for the rest of the day and we made jokes about the new hair gel on the market.  When we went to the spina bifida clinic, we were taken to our own room and from there all of the dr.'s that we needed to see (urologist, nuero surgery, physical therapy, orthopedics, social worker, CNP) came in one at a time and checked PJ out.  The nuero surgery team said that PJ's back looks really good and hopefully by the end of this week, we shouldn't have to dress it anymore!  Urology came in and made sure we were doing ok with the cathing situation, which we are.  Physical therapy came in and talked to us about stretching PJ's legs out, making sure he gets enough tummy time to build his back/neck muscles, just like with any baby.  Orthopedics came in and decided that we needed to put PJ in a pavlic harness.  That is a harness for hip dysplasia.  His left hip isn't totally in the socket and if we don't correct it now he'll have problems with hip dislocation when he is older, which we don't want!  So, he is in a hip harness for 6-8 weeks.  See pic below.


The nuero surgery team came in and told us that there is some more fluid between his vetricles than when we last did the ultrasound which was about 2 1/2 weeks ago.  So, they want to do another ultrasound in a month and see where we are then.  One thing I appreciate about them is that they are conservative with putting a shunt in.  They don't want to rush and put it in if it isn't needed.  We are still praying that God would take all of that extra fluid away and not have to get a shunt.  The dr. reassured us that shunts aren't a big deal, but it still is brain surgery and those word in and of themselves are scary!
So for now, we are trying to make it to Dec. 2nd w/o any complications or major concerns.  It seems like it is so far away but I know that it will be here before we know it!

Other than those visits we are trying to adjust (still!) to our new life.  We are grateful and thankful for every day that we have together as a new family.  Daniel has said to me a couple of times "Mommy, PJ is so cute...he should get in trouble for being so cute!"...does that just melt your heart or what?!  It has been so great to see Daniel's love for PJ growing everyday.   Daniel looks bigger and older than ever now days, which I know is because PJ is so small.  It is a bittersweet feeling.  I can't believe that he is going to be going to kindergarten next year!  I mean, where did the time go?!  I honestly can't even think about it w/o getting a lump in my throat and a tear in my eye!  I don't know what I am going to do!
This Friday, along with the MRI/x-ray appt. the boys (Mitch and Daniel) are going to the monster truck show while PJ and I hang out in the hotel room.  You should have seen the excitement on Daniel's face when we told him what we were doing!  He is so excited to see the monster trucks.  I must admit, I'm a little jealous I can't go, I think it would be entertaining just to watch Daniel watch the monster trucks!  It will be good for Mitch and him to have some quality time together, so I will just get over my jealousy ;-)  I'm sure there will be pictures to be posted of their adventure!

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