Rheumatology Follow-up

Ova's health has made huge strides in the right direction, and I am so grateful for that!  He still can't walk completely on his own, he needs the support of his crutches, but he's able to go out and about and do the things that he hasn't been able to do for so long.  I've been making sure he keeps up with his medications and that we go to all his appointments, and I have hope that we'll be able to finally one day not have to worry about it coming back and happening again.  The only real thing that worries me is that even though the medications that they are "trying out" on him are working.....why can't they give us a definite diagnosis?  It's very frustrating, the not knowing, but we are focusing on the positive and the fact that he is walking and whatever they are doing is working and helping him!

We had a follow-up appointment today with the rheumatologist.  He just wanted to see how Ova was doing, to see if the plan he had put together was working and to see what direction we needed to go to help him continue to get better so he'll be able to walk without assistance.  The first time we went to see him, I pushed Ova in the wheelchair.  Back in November, he wasn't physically able to put any pressure at all on his feet.  This time he walked in on his own with his crutches.  That's a HUGE improvement!  The first thing Dr. Kunkle did when he walked in the room was look around for the wheelchair.  He was so happy to see the crutches instead of the wheelchair.  That meant that we were doing something right!

He started with his exam and checked the pain level in his hands and arms...

 Then his knees and feet...

He was really happy with the progress Ova has made in the past few months.  When we first came in in November, he was in so much pain that Dr. Kunkle almost couldn't even get through the exam.  This time was much better.  Since the medications he gave him were working, he didn't want to change anything.  He suggested that since Ova can move now, that he try to be more active.  Try to walk more or exercise more.  He said that his pain was probably even worse because he had been immoblie for so long.  If he uses his joints and loosens them, hopefully the pain would continue to go away until he'd be pain free and be able to walk without his crutches or any support at all.  He filled Ova's prescriptions, sent him to get more lab work done and had us schedule another follow-up appointment in a couple months.  I'm so grateful that finally something is being done about his pain....hopefully we can continue in the right direction and get rid of it once and for all!

Suliana Shower

My little brother is blessing his second child and my other little brother (Ova's brother) is getting ready to have his first.  Time is flying and people are growing up too fast!  Sau and Suliana got married last year in February and they are expecting their baby girl within the next couple weeks!  Sau.....well, how can I describe him?  He's such a proud dad and their baby isn't even born yet!  LOL.  As the date of the shower was getting closer and closer, he kept bugging Ova and the other brothers to come to the shower....he was telling them it was for girls and boys, and that he really wanted them to come.  I'm sure it was just because he didn't want to be the only guy there....cause you know he wouldn't miss it for the world.  LOL.  Ova and Jr did end up going, but they just stayed in the kitchen helping us keep our dessert table nice and full.

The shower was so nice.  Tina and I worked together with Suliana's mom and sister to put it together and it turned out beautifully.  We had bread bowl soups to eat and lots of desserts.......Alice, Siosiana and I came up with a game each.  It was beautifully decorated and everyone had fun mingling with everyone that was there.   Poor Suliana was so uncomfortable the whole time, you could just tell she was so ready to get her out......haha....oh the joys of being pregnant!  :)

Suliana opened all her presents and this was the cutest gift there.  Lola Marie and Sheena made if for Sau, it's the "Daddy Diaper Duty" tool belt with everything he needs to prepare him to change those diapers.  Sau wore that belt the whole rest of the shower....and he was proud to wear it!  Haha

After the shower when Suliana was thanking everyone for coming, Sau was standing right next to her with his hand out, ready to grab the microphone from her so he could say a few words too.  He thanked everyone for coming and he said that he knows that showers are not usually for guys, but he is just so excited to be a dad that he didn't want to miss it.  He is such a proud daddy and his baby girl is not even born yet, but she's got him wrapped around her little finger.  He's going to be such a good dad.  I'm so happy for them! 

 All the sisters, just missing Kiki

 With the little Fangupo girls

Lavaka Blessing

Can't believe my baby brother has two kids.....I don't think I'll ever believe he's old enough to be married with kids LOL.  Him getting older makes me feel really really old.....but I'm still so young hahaha!  My handsome nephew Lavaka got blessed today and it was so special.  He was blessed by his daddy in the Sunset Provo ward.  That's our home ward, the ward we grew up in.  I haven't been back there in forever and as soon as we walked in it felt like home.  I will always have a special place in my heart for the Provo Sunset Ward and people!  :)

I worked the grave shift on Saturday, so I didn't any sleep before heading down to Provo, but Ova drove, so that was nice because I got to close my eyes a little bit. 

My brother did such a good job with the blessing and handsome little Lavaka looked so cute in his little white tuxedo!  What a special day for our family!  Love you baby Lavaka!

 

Family Date

Now that Ova is mobile, we've been trying to take advantage of every opportunity we can to spend time together, both as a couple and as a family......being bed ridden for such a long time, you learn to appreciate the little things.  As soon as he was able, I took him everywhere with me.  He usually just sits in the car while I run in and do the different things that I need to, but just having him next to me for the drive is so nice, and I've missed him.  He was down for so long that he missed out on a lot of the little day dates I took our kids on.  We've been trying to make up for it now. 

We had a family day today all day long.  We had lunch at Chuck-A-Rama, watched a movie at the affordable theatre on 54th South, then ate ice cream at Leatherby's.  It was a fun day well spent with the family!  I am so blessed and I love my family so much!

It's RSV season right now in Utah, which means Baby Katea is on house arrest.  Her little lungs are getting stronger and stronger, but they're not 100% yet and she's still so fragile.  We haven't taken her out of the house for months now, and I will admit that it does suck.  I wish we could take her everywhere with us.  She's older now and she LOVES to be out and about....but we just can't risk it.  She knows when we're getting ready to leave and she starts throwing a fit, screaming and crying....it breaks my heart, but I know that if we make these sacrifices for her right now while she's still young, it will be worth it in the long run when she's healthy and strong.  Just making the change and moving to the basement had made a HUGE difference!  She hasn't gotten sick or been hospitalized since the move.  She just needs the extra protection from all the traffic that comes through our house...espeically sick people.  She gets that downstairs!  For now, she's still a fragile little one pounder and we have to remember that!  Thank goodness for Gramma Tea for always being so willing to stay home with her when we go out.  I appreciate her so much!

We watched Wreck it Ralph....super cute kids movie!

Can't go wrong with Leatherby's!!!

Sheesh, can you smile hun??  LOL

Instagram January 2013

 

On the Wall

When my baby Katea was born, she spent 134 days in the NICU.....that's almost 5 months.  In the time that she was there, I went to the NICU every single day....sometimes more than once a day....never ever missed one single day!  To get to some of the rooms in the NICU you have to walk down this hall, and on the wall in that hall they a bunch of frames with before and after pictures and stories of preemies who had been there before.  I loved that wall.  I called it the miracle wall.  The wall of hope.  Some of the stories on that wall had miraculous endings, some not so happy.  Everyone had different trials and struggles and different successes, but those stories were real and true and those were babies and families who had been in the exact position that I was in at that moment.  Ova and I stopped at the wall several times throughout our time there, just looking at the pictures and reading their stories and getting hope.....we always wanted our little girl to be on that wall.

Last month when I was taking baby Katea to one of her appointements, we stopped by the NICU to see if we could see any of our nurses, and Tricia came out.  Tricia is one of my good friends from the NICU.  She had a preemie daughter, who is 12 years old now....and she has dedicated her time to giving back.  She, with another lady, Kathie, started up Common Bonds.  A support group made up of parents who had been through the NICU experience and wanted to help others by giving hope.  She's such an amazing woman and I can't say enough about her.  She helped me a lot!  She came out to the hall and played with baby Katea for a little bit and then she asked me if I would let Katea be on the wall.  At first it didn't click at what she was asking, but as she started explaining to me what she needed from me, I realized that she meant THE WALL....the NICU wall...the miracle wall....the wall of hope.  My heart smiled as I said yes, so happy that we'd be able to share our story and hopefully help give hope to the NICU families that would come....like those on that wall did for us!  :)

I typed up our story, sent in some pictures......and a little while later Tricia picture texted me these pictures:

 

 

Thank you Tricia for giving us the opportunity to share our story on the wall.....Thank you to the NICU nurses who loved and cared for our baby girl.....Thank you to our little miracle Katea for your strength and fight! 

We are so blessed!

 

Here's the story that's up on that wall:
 

Kalolaine Katea Fangupo
Our daughter Katea was born at 24w5d, weighing 1lb.12oz. I was pregnant with twins, two girls, but had complications throughout my whole pregnancy due to a subchrionic hematoma. Half way through my pregnancy my baby Cindy's heart stopped beating and shortly after that my body tried to reject her fetus and I went into labor. At 22w my water broke and I was admitted to the hospital until further notice. I had to go through that very difficult conversation with the Neonatalogist about how my baby Katea was still really early and probably wouldn't survive either. If she did survive, I was told she could face some serious mental or developmental delays or issues. That conversation was probably the hardest one I've had in my life. Thankfully, they were able to stop my contractions and my precious little miracle Katea held on for those 2 critical weeks that got her to the 24 week mark and she made her debut on September 26th, 2011 at 24w5d. Baby Katea came into this world so tiny, but so so strong. We call her our little miracle, because that is what she is. When all odds were stacked against her, she showed them who was boss! We were so blessed that she didn't suffer any ventricular hemmorages, and that her little heart was developed and beating. But obviosuly, being born so early, her lungs were not completely developed and that is where she's had the majority of her struggles. She was intubated for the first couple months of her life and it took her 4 1/2 months to strengthen her little lungs as she moved from one type of support to a lesser type of support until finally, after 134 days in the IMC NICU, she was able to go home. The NICU was not easy at all, and it really was that emotional rollercoaster ride that everyone warned us about, but we are grateful for it! Katea went home on oxygen and a monitor and she really needed the additional oxygen support throughout her first year of life. Her eyes were not fully mature when she was born, and she did develop some ROP, but with time that has healed itself. She is 15 months old now and she's amazing! She still has some struggles with her lungs and has had to be hospitalized a few times since leaving the NICU because of it, but she always fights her way through it. She's completely off oxygen now and has been for 3 months. She's reaching the milestones of her adjusted age and with every milestone she meets, it's a huge celebration! We understand how lucky and blessed we are that she is alive and we are aware of the progress that she makes every single day. We would like to thank the IMC NICU staff for everything they did for our little miracle. She wouldn't be here with us, doing as well as she is if it wasn't for them, they are true miracle workers!