Hearts 4 Kyra

A little girl's courageous battle with juvenile dermatomyositis

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Hero of the Month (Part 2)

Posted by hearts4kyra on September 7, 2009 at 2:13 PM Comments comments (2)

Frday September 4, 2009

Here is the offical poster that is up around Kapolani Hospital for Women and Children to honor Kyra for being the Hero of the Month for September. Way to go Kyra!

Children's Miracle Network Radiothon

Posted by hearts4kyra on September 7, 2009 at 4:58 AM Comments comments (0)

Friday August 28, 2009

We were invited to share our story with the listeners of KSSK for the Children's Miracle Network at the Kapiolani Hospital for Women and Children's Radiothon.  Yesterday (August 27) Tracy was on with Perry and Price in the morning.  She was awesome.  I only wish that there was a way to get that interview on this website so that we could hear it again.  I just finished my interview with Kathy with a "K" and she was great.  I wanted to take this opportunity to thank one listener in particular who apparently heard the story when Tracy was on yesterday, stopped by the hospital and dropped of two washable N95 masks for Kyra which are the ones that are approved for the H1N1 Flu.  It really goes to show you that people have the aloha spirit and want to help. 

Many thanks to the KSSK family for extending their hearts out to Kyra as well.  Uncle Larry and Uncle Michael, Aunty Kathy, Aunty Sweetie and Aunty Christine for all your kokua in bringing her story to the listeners and people of Hawaii.  Aunty Stacie of the Children's Miracle Network for giving us the chance to share the wonderful care that we received while at Kapiolani, and to Uncle Sid (Fernandez) for taking a picture with Kyra.

Happy Birthday Kyra

Posted by hearts4kyra on August 26, 2009 at 2:00 AM Comments comments (4)

Sunday August 23, 2009

HAPPY BIRTHDAY KYRA!!  I can't believe that today you turn 5.  It just seems like yesterday that we were bringing you home from the hospital.  Well for your birthday we are going to take you to a movie of your choice.  What shall it be?  Transformers 2?  G I Joe?  District 9...what is Ponyo?...actually it turned out to be a really good movie.  Kyra gave it her right thumb...to suck of course which is just as good as a Ebert thumb's UP!

Kyra with some birthday gifts...I think this one is from Aunty Robin and Uncle Greg

Family Day

Posted by hearts4kyra on August 26, 2009 at 1:23 AM Comments comments (0)

Friday August 21, 2009

Happy Birthday Hawaii!  It's Admission's Day.  Fifty years ago today Hawaii became the 50th state in the Union.  To celebrate we all got in the truck and drove around the island.  It was a beautiful day for a drive and we just loved the scenery of the mountains and the ocean swells.  What a perfect day to be with the family and just be thankful for everything that we have.

                                   I'm hungry!                                             Lunch at Haleiwa Joes on the North Shore

Kyra's story goes on the radio

Posted by hearts4kyra on August 18, 2009 at 11:45 PM Comments comments (3)

Tuesday August 18, 2009

Today we recieved some information from Tracy's mom (Kyra's Grandma LaVerne) through her boss that the Director of the Children's Miracle Network was interested in Kyra's story.  So much so that she set up two radio interviews with us to tell Kyra's story on the air.  The radio broadcasts will be as follows:

Thursday August 27, 2009:  8:45 a.m. Tracy talks to "Perry and Price" on KSSK (92.3 FM)

Friday       August 28, 2009:  10:30 a.m.  Alan talks to "Kathy with a K" on KSSK (92.3 FM)

Hope you can all listen on the air as we tell the world (or at least Hawaii) Kyra's remarkable story of courage.

Mahalo for all your kokua

Making progress

Posted by hearts4kyra on August 18, 2009 at 2:14 AM Comments comments (5)

Monday August 17, 2009

We had a meeting with administrative members of the school close to our home today, to talk about Kyra's needs academically as well as the type of physical and occupational therapy that is provided there.  They were very positive and cooperative with trying to determine how they could help us.  We will be scheduling a therapy evaluation for next week to come up with a plan for Kyra, and they will be looking for a home tutor to come to the house to work with her for 3 hours a week.  At least it's a start...

When we got home we got a call from Dr. "Y" and she told us that Kyra's muscle enzyme count came back normal from a recent blood test.  Finally...some good news.  The muscle breakdown that caused all of this from the start was not happening in her body anymore, at least for now.  She then decided to lower her steroid intake per day to start the process of "weening" her off.  We'll pray that she will continue to only get better.

Hero of the Month

Posted by hearts4kyra on August 16, 2009 at 1:51 AM Comments comments (1)

Thursday August 13, 2009

Today we were notified by Aunty "D" (Kyra's pt therapist) that she was named "Hero of the Month" for September for Kapiolani Women's and Children's Hospital.  Way to go Kyra!

Left to Right

Posted by hearts4kyra on August 11, 2009 at 2:11 PM Comments comments (4)

Wednesday August 5, 2009

 

(I know that this blog entry is late, but I had to tell you about this one.)

 

During Kyra's second stay in the hospital, a NG (nasogastric) tube was inserted to supplement her eating.  Basically we were feeding her a liquid that contained all of the nourishment that her body required on a daily basis through a tube that goes in her nose, down her throat, and into her stomach.  It was very traumatic for Tracy to see this inserted into Kyra and she could not bear the thought of having to do the same to her after we left the hospital.  However, it was necessary for at least one parent (me) to learn how to do this in the event that it should come out at home or if we needed to replace it.  The maximum time that such a tube can stay in is 30 days.  After this time has passed it is necessary to remove it, switch to the opposite nostril, and insert a new tube.  Here we go...

 

First I wrapped Kyra up in a towel so that she couldn't move her arms.  Tracy prepared by getting a bowl in the event that Kyra might start to vomit.  I carefully removed the tape that was holding the tube against her face.  With a quick zip, the tube was out.  Kyra was crying, but that was the easy part...are you ready?

 

I got out a new tube and measured from her nostril to her ear, around it, and down to her stomach.  Next I marked off where the tube would be at the entrance of her nose (this served as a reference point as to when to stop inserting the tube).  I then lubed up the tube, held my breath, pushed slowly up her nostril, felt the roof of her nose and then...nothing.  I backed it out, held it a little firmer, got it started and...nothing again.  By this time Kyra was crying like crazy, Tracy was nervous and I had to just block all of that out.  Once again I took the tube in my hand, held it against her nostril, pushed up a little and...it started going...and once I felt it going I kept pushing it, and feeding the tube, and pushing until I reached my mark right up to her nose.  Despite the crying, and the vomiting (I guess through gag reflex this will happen) we got it in.  Tracy and I secured the new tube to her face with tape, and checked for placement to be sure that the tube was actually in her stomach (where it should be).  What a relief...won't have to do this for at least another month.  I think next time it's Tracy's turn.

 

Thanks Andrew and MJ for being such awesome teachers while we were in the hospital!! 

                                     Left                                                                                                 Right

Only 10?

Posted by hearts4kyra on August 10, 2009 at 1:58 PM Comments comments (0)

Thursday August 6, 2009

Today started out like every other day.  Get the kids ready, feed them breakfast, give Kyra her meds, drop Sierra off at school and then on to therapy.  Kyra has been making great strides thanks to Aunty D and Aunty C as well as all of the others who help in the rehabilitation clinic.  She definately has come a long ways in a very short amount of time.  This is due to the extensive therapy sessions 3 times a week for each pt and ot.  However, today we got the news we were not expecting...her therapy sessions had run out.  We thought that she had a couple of months worth of therapy based on the insurance coverage that she has, at least that is what we were told.  The fact of the matter was that she was entitled to only 10.  Not ten each, just TEN!  For a lifetime disability that would require extensive therapy and rehabilitation...ten.  We couldn't believe it.  Tracy and I just took a moment to think about that one, and then we moved on.  No sense sulking cause it won't change anything.  It only makes us more determined to get everything that Kyra deserves to get better.  Nothing will stop us from achieving this. 

                                   Therapy at home

Haircut

Posted by hearts4kyra on August 6, 2009 at 11:50 PM Comments comments (1)

Friday July 31, 2009

 

We took the kids to get a haircut today with Aunty Mei (Tracy's stylist).  She was great!  Kyra went first (of course) followed by Sierra.  Then it was me, and finally Tracy.  It was a great outing of a different kind for the entire family.  After that we walked over to the City Hall Office to get a Handicap Parking Placard for Kyra.  On one hand I was glad that this would help us when we take her places because it makes things a little easier to have an access aisle, but on the other hand it was very surreal to face the reality that Kyra, my youngest child, will for the rest of her life be known as a physically disabled person.  That was a pretty tough moment, but all it took was her smile to remind me that she will beat this and walk and lead a normal life again very soon.  And that is my reality that I see for her as well as everyone that is praying for her.  She is our little miracle.

 

                               Kyra with Aunty Mei                                                            Is that Sierra?


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