Michael, Katy, Kai & Leilani

Tuesday, September 30, 2014

Liliana Leilani...

So I decided I should probably get Leilani's story written before she gets too old!

After having a c-section with Kai I had really hoped to be able to have a VBAC with Leilani. June 18th I started having almost seizure-type shaking when I would lay down where my legs would start shaking and I couldn't control it. It would come and go but would keep me from being able to sleep. After 2 nights of this we decided we needed to go to the hospital to find out what was going on. They monitored the baby and everything was fine but I was having contractions sporadically. They checked me and said I was at 1 but she was still really high. They had me walk around the hospital to see if things would progress. When I came back, nothing had changed. They had me wait until the doctor came before they let me leave. When he came, he said he expected we'd have a baby within the next few days. (I wasn't quite 37 weeks yet.) Well the weekend came and went...no baby. My mom stayed with us expecting we would have a baby. I went to my normal visit and the doctor was surprised I hadn't had her yet. When he checked me at that visit, he said he couldn't feel anything this time and there was no way he could "help things along." I was crushed! I thought we were going to have our baby and now it didn't appear she was going to be coming anytime soon.

Jump ahead to July 8th. When I went in for this appointment I was informed the doctor was going to be gone the next week on vacation. On top of that Leilani was now measuring off the charts. She was measuring at over 10 pounds and the doctor was concerned about her being in longer. He was willing to let me go to the Monday after his vacation (the 14th) but didn't really want me going past that. (The week before Michael had given me a priesthood blessing and at that time I knew I wasn't going to get the VBAC I had wanted. I didn't know why but I knew.) After I saw the doctor the nurse made the comment that he was doing his scheduled c-sections on Friday, July 11th and if I wanted to go that route instead I could. I would be his second surgery. I left the appointment without scheduling one. I called Michael and told him what had happened at the appointment and what I was feeling. After talking we decided to go ahead and schedule the c-section. Friday, July 11th our little girl would be here.

So I was taken into surgery at 10:30 and had a spinal tap done. It took a few pokes before the anesthetist was able to get it in but she was successful. Michael was able to be in there for the surgery and got to see her delivered (which he didn't get to do with Kai because of the curtain and how quickly they delivered him.) When the doctors went to get her out, they found the umbilical cord at the opening of the cervix and it had actually wrapped around her neck twice which is why she wasn't coming on her own! Needless to say, I was glad we decided to do the c-section cause it could have been a much more scary scenario otherwise.

Our "little" girl was born at 10:56 a.m. weighing 9 pounds 14 ounces and was 20 1/2 inches long! I got to see her for a while before they took her out of the operating room unlike with Kai where they whisked him off to the NICU. Michael got to carry her to our room and do skin to skin with her while they finished with me in surgery. When I got back to the room I immediately got to see and hold my daughter and from that point on we were inseparable! It was so fun having her in the room with us the whole time (Kai was in the NICU his whole 3 days and I didn't get to see him the first 8 1/2 hours he was born.) This birthing experience was SOOOOO much different than my first. (In fact we were discharged from the hospital by 7 p.m. the next night cause we were both doing so well!) I am so grateful for the doctor and nursing staff for working with us to have a wonderful experience bringing our daughter into this world!

At the hospital

Snuggling with mommy

Snuggling with daddy

Big brother, Grandma & Grandpa

Thursday, July 11, 2013

Happy 1st Birthday!!!!

Can't believe our munchkin is 1!!!!!!!! Wow, where has time gone?!?! We were originally going to celebrate it while at a family vacation on the coast, but plans were changed so we ended up having his party at Meadowbrook Family Fun Center here in Yakima with our family in the area and it was a BLAST!!!

Here are some pictures of the night...

G&G, Cousin Nico, Birthday Boy

Close up of the cousins

Pictures of the super cute cake courtesy of The Cake Decorator Shoppe in Yakima

Kai's "Smash" cake

Birthday Boy!

Grandma & Birthday Boy

Grandma, Birthday Boy, Cousin Cassidy, Aunt Bree (Cassidy & Kai are 6 weeks apart)

Where my cake?!?! :-)

Cousin Brian and Kai

(*Brian was our helper at the party. He helped Kai smash his cake and open presents.)

It's been a super busy year but we wouldn't trade him for anyone else in the world!

HAPPY BIRTHDAY KAI!!!!!

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!

Tuesday, September 11, 2012

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