Staph...

So during the course of Kai's castings he started to break out behind his legs.  We figured it was just from rubbing against the cast but it continued to get worse.  Then his face started to break out.  We were told it was an allergic reaction behind his legs and eczema on his face.  We took a break from casting thinking his body just needed to have some time to heal.  We waited a couple of weeks and after the first casting back, he immediately started reacting (feet turning purple, feet swelling, etc).

During this time, Kai's face started to turn red.  It started out small.  Just a couple little patches.  Then it started growing...and growing...and growing.  Then his face started breaking open with sores and weeping. Bumps started appearing in clusters on his back. We were getting more and more concerned as everything we were trying wasn't working.  We were given steroids, anti-fungals, ointments...nothing worked.  We saw 9 doctors in 5 weeks hoping someone could give us an answer.  Finally, our pediatrician made arrangements for us to go to Seattle Children's ER to possibly be admitted as we had exhausted all our options here.  So, on a Friday, February 28th, we drove from Sunnyside to Seattle, praying they would admit Kai and help us.  They did.

Kai was diagnosed as having a super staph infection in his face.  For four months our little guy had staph growing on his face and body and it was missed!  We couldn't believe it, but luckily it was treatable!  They gave him IV antibiotics and things started to improve.  While we were there, and after talking to the attending, they decided to keep him longer to try and figure out what other "problems" there were with Kai as we hadn't received the genetics test results back yet.  We were in the hospital 8 days total, but in those 8 days, we met with a dozen different specialists and had different tests run.  6 months worth of appointments done in a week!  Very crazy!  We are so appreciative to them that we were able to get some answers and tests completed!

One of the tests they ran was a swallow study.  The doctors were concerned as Kai hadn't gained weight in several months (since the "rash" first appeared).  The swallow study came back as showing he was at "severe risk" of aspiration so they put in an NG-tube through his nose.  That was the LONGEST 48 hours of my life!  He and I were both miserable!  (He was still exclusively nursing at the time so when they did the tube, they made him go cold turkey.)  I couldn't hold him without him getting frustrated cause he wanted to nurse!  Michael and I sat one night and had a long discussion about what was going on.  It didn't feel right to me to have the NG-tube.  Kai had NEVER had any respiratory problems.  Not even a cold!  With all of the trips to the doctors' appointments he'd never caught a bug of any sort!  Their whole concern was based on "what-ifs".  We decided to really pray about it and after our prayer we decided we needed to have the tube taken out.

The doctors were not happy when we insisted to have the tube taken out, but we are SOOOOO glad we did!  He returned to his happy self and everything became right again!

Two weeks after returning from Seattle, Kai started to have the rash appear again.  He wasn't acting like himself and things just seemed to be heading backwards again, so on Easter Sunday we headed up to Memorial in Yakima this time to have it looked at.  After explaining to the doctors about Kai's condition (which we had confirmation of by this time) they decided they needed to admit him and started him on IV antibiotics again.  This time he was only in the hospital 3 days, but it seemed to do the trick.  They had us follow up with Seattle Children's Dermatology, but they couldn't explain why the staph had come back again.  What we think happened was when he was given the medicine in Seattle, they dropped the strength of the drug too quickly so it didn't fully kill the infection before we were done with the medicine.  They used stronger drugs in Memorial for a longer time so it killed off the whole infection.  Since his second hospital admission, he's been staph free!!!

Poor little guy has gone through a lot!

Pelizaeus-Merzbacher Disease

It's been so long since I posted. So much has happened!

So I better start from the beginning...

Within the first couple of months after Kai was born, we noticed his eyes had a hard time focusing (they moved side-to-side all the time.  As Kai got older, we also noticed he wasn't hitting his "milestones" on things like holding his head up, rolling side-to-side, etc.  We chalked it up to the fact I wasn't doing much tummy time with him as he was in full leg (hip to toe) casts so doing tummy time was not really possible.  His doctor figured he would catch up once we were done with casting.

Well, things didn't improve like we expected it to.  By 5 months, Kai still wasn't holding his head up and his head was "shaking" more.  So we met with the neurologist at Seattle Children's on February 8th and scheduled an MRI for the following week.  On February 15th, our sweet little man was sedated and an MRI was done.  Once he woke up from the anesthesia we left and had no sooner started driving out of the parking lot when the neurologist called.  I was driving so Michael took the call.  I continued driving as the neurologist said we didn't need to come back to talk.  After Michael got off the phone he said we needed to pull over to talk.  I felt like we needed to be as close to the temple as we could without going inside, so I drove up to the Seattle Temple and Michael gave me the news.  Kai's MRI came back showing abnormalities and they were sending his blood off to be genetically tested.  Then the three words I never imagined I'd hear...Pelizaeus-Merzbacher Disease (www.pmdfoundation.org).

The doctor wasn't 100% sure this was what Kai had but was 70% sure, so he wanted to let us know so we could start to educate ourselves on it.  And boy did I start researching!  I read everything I could find online about it.  As much as I didn't want to admit it, it fit.  Kai matched so many of the symptoms, it was going to be near impossible for him not to have it.

The middle of March we received a phone call from Seattle Children's.  Kai's genetics test came back...POSITIVE.  Our son had PMD.  Not just that, he had a point mutation of PMD (which is even more rare).  Then, on top of that, the mutation only had one other documented case (and that male was 18 before he was diagnosed so there was no info on this mutation in infants).  By then I had come to grips with it.  I'd decided that it didn't matter what my son had.  He was my child and a special spirit from my Heavenly Father.  I was entrusted with this special person whose smile lights up any room he's in.  His laughter is infectious.  He is a perfect little angel sent from heaven!

Since then our lives have become even more busy with physical therapy, in home nursing visits, dealing with insurance, and loving our little man.

Our son may have PMD, but he has all ready shown he's not going to let it stop him!  He is growing by leaps and bounds and amazes us more and more each day!

He's our little monkey and we love him!

So I decided I should probably go ahead and document the journey we've been on the last few weeks, but first let me go back to the beginning...Kai's birth.

When Kai was born, we learned something we never imagined possible...I had a genetic mutation that I could pass on to my children.  Now, I'm sure you're thinking "what?" "huh?".  Well when I was born, my feet were turned out and up (to where they were against my shin bones so it looked like I had no feet).  There was no name to what it was.  My parents were just told it was a "congenital birth defect."  I was casted at two weeks and at five weeks (the casts stayed on for three weeks at a time) and that was the end of my being treated.  Doctors after that point (and up to ages 1 and 2) said I was too young to be treated and by the time I was three, my parents were told I should have been treated earlier.  So I've lived with this problem (although my feet look "normal") my whole life, although I've learned to adjust and most of the time you would never know I had issues.  Because I was the only one in the family that had ever had this, we figured it was just a fluke.  Well, apparently it's hereditary.  We found this out with Kai's birth.

Thanks to Kai's awesome pediatrician, he referred Kai to Seattle Children's Hospital to be seen by an orthopedic surgeon up there.  So on August 8th, my mom, Michael, and I took Kai for his first appointment. The doctor came in, we talked, and said Kai had "vertical talus" also known as "Rocker Bottom Feet".  It's the opposite of Club Foot and if you look it up online, he has the congenital vertical talus.  He has no other mental or physical abnormalities that are often associated with it (like Trisomy 9 or Trisomy 18).  Basically his ankles are dislocated and didn't form the rest of the foot properly because of that so his foot, instead of being angled normally look like the bottom of a rocking chair; hence the name.  The wonderful part of it though is they have a treatment for it now that has been shown to be successful!  The treatment requires full leg casts (Yes, up to the hip!) changed weekly for up to 12 weeks, with x-rays halfway through to make sure the feet are moving and forming like they should be.  Then, when his feet are in the correct place they will put a pin through the ankle to the feet to keep them together, after which he will have a cast for 3 weeks.  After that he will be wearing the shoes with a rod connecting them (like they do for club feet) full-time for 3 months and then at night for 18 months.  It's a long process, but the outcome is REALLY good, especially since we're getting him treated so young.  (The older the child is, the more invasive the procedure is to correct it.)  So every week, I get to make a trip up to Seattle, but it's been totally worth it!

Here's some pictures of his progress.

Before we started treatment

We go up for Kai's next weekly appointment this Friday where he will have x-rays taken to check the progress, but on the outside his feet are looking GREAT!!!  We're SOOOOOO excited at the progress made so far and can only wait to see what happens from here!

Just had to share...

So I've been going through Kai's clothes and changing out clothes he doesn't fit into anymore for bigger sizes in his dresser.  The other day my mom suggested getting out his toys as well to see if he would start focusing on them and even possibly playing with them.  Well here was our first attempt with this rattle...

And just because he's so cute...

 first outing at the park

 day of blessing

first smile caught on camera

just sitting being happy with mommy

another happy shot

and some more

 last happy shot this round

Happy 1 month birthday Kai!!

Hard to believe my little man is 1 month old all ready!

 Right after he was born on June 23rd

Taken on July 22nd  (He was a little sleepy when I took this picture!)

He is now 7 lbs, 14 ounces and 21 1/2 inches long!  (He was 7 lbs, 8 oz and 19 1/2 inches long at birth.)

HAPPY BIRTHDAY KAI!!!!  WE LOVE YOU!!!

Kai's Birth Story

So I decided it was finally time to document Kai's birth.  Just like the pregnancy, Kai's birth was anything but normal.

On Thursday, June 22, I had my weekly non-stress test and ultrasound at the hospital.  According to them, everything looked fine, nothing that raised any flags.  We had been told to be prepared as it looked like we would probably be having an 8-9 pound baby when he would be born.

That night, I couldn't get comfortable in bed.  I was having horrible pain at my pelvic bone, which had started happening earlier in the week, but this was the worst.  We called the doctor on call and he told us there was nothing that could really be done.  He said it sounded like my pelvic bone had become dislocated (which can happen in pregnancy).  I got out of bed and went and watched TV for awhile to wait until I was SO exhausted I couldn't help but fall asleep.  Finally around 3:30 a.m. I was feeling tired enough to go to bed.  I had been in bed for about a half hour when all of a sudden I got "the urge" and had a gush of water come out.  Yes, my water broke.  I woke up Michael and we finished getting ready and headed to the hospital.

At the hospital, they checked me and said that I was at .5 cm.  One of the things I found out at the hospital was I was one of the lucky pregnant women who tested positive for Group B Strep.  Because of that, I was immediately started on IVs and IV antibiotics, which meant I was bedridden.  They also started me on Pitocin because I had not started going into labor on my own.

After 12 hours of labor I had only progressed to a 4, but the contractions were coming strongly every 1 1/2-2 minutes so although I wanted to do it without drugs, I finally gave in and asked for an epidural.  I knew I still had a long way to go and couldn't do it on my own anymore.  Ahhh, the epidural was great!

After 32 hours of labor, I was FINALLY at a 10!  It took FOREVER to get from a 9 to a 10, but once I did I thought everything would go much easier from there.  Boy was I wrong!  I actively pushed for 4 1/2 HOURS but Kai wasn't descending like he should, (normally they only allow people to push for 3 hours, but since Kai wasn't in distress and I was willing to keep going they allowed me to.)  I finally got to the point where I had run out of energy.  I couldn't push anymore.  That's when they brought the doctor in and she gave us the news.  Apparently Kai was head down, but was facing sideways which was why he wasn't coming out.  She said he was too high to use the vacuum, so our only options were forceps or c-section.  After talking to our family medical expert and saying a prayer, we decided the only logical option was a c-section.  I couldn't bear the thought of possibly doing permanent damage to Kai's head with forceps.


So at 4 p.m. on Saturday, June 23 (Yes, 36 hours after my water first broke!) they had me in the operating room to deliver Kai.  He was born at 4:14 p.m.  Michael got to cut his umbilical cord.  


They gave me another epidural before they started the c-section, but like I do with all medication, it apparently didn't take hold like it should have as I started to feel them stitching me up.  (Not just the pressure and knowing they were stitching me, but the pain associated with it!)  


After Kai was born, they took him to the special care nursery and wheeled me back to my room.  They had to put Kai on IV antibiotics because I had started getting a fever (indicating an infection from the Group Strep B) while I was in labor so he had to be treated.  I didn't get to see him for the first 8 1/2 hours he was born.  They had to wait until my epidural had worn off before I could go see him.  He also ended up having jaundice, so on the 2nd day we were in the hospital, I was limited to 45 minutes every 4 hours with him.  THAT WAS HARD!!  When he was finally cleared to not have to be under the UV lights for the jaundice, I spent every moment I had (much to the dismay of the nurses due to the swelling in my feet) with Kai.


We ended up coming home 3 days after Kai was born to our brand new house.  We closed on our new house the day I went into labor and it was decided that we shouldn't go back to the rental house we were in at the time.  We should come to our new house.  So thanks to my dad, husband, and church members, we got moved into our new house Monday the 25th!


So, that's the story of Kai's birth!  Sorry it's so long, but like I said, it was anything but normal!

Kai

My sister, Melissa, has been asking for pictures of Kai, but due to my phone dying on me in the hospital and having to wait for it's replacement, I haven't been able to post pics.  On the 4th of July, my honey was nice and got me a camera so I'm not dependent on just my phone anymore!

So here are some pictures of Kai over the last few weeks!

Just doing what he does most of the time...SLEEP!

Hanging with our favorite person...GRANDMA!

Chillin' with our favorite GRANDPA!

More sleeping needed!

Aren't I cute!?!?!?

Meeting Aunt Alissa for the first time!

Just in case you thought Kai didn't get enough sleep!  

My favorite DADDY!!!

Hard to believe he'll be a month old tomorrow!  Time flies!!! (most days anyway!)