Goodbye Six, Hello Seven!

26 Feb

Not only did Makoa pass the 7lb mark at his latest appointment on Tuesday, he absolutely destroyed it. 7lbs 8oz. He was 6lbs 12 oz last week, so he’s been doing some serious eating. Interestingly, we have noticed that he has been much more vocal in showing his displeasure when he’s angry or uncomfortable. He actually threw a semi-fit tonight at dinner, so much so that Tiffany actually had to try and calm him down. We feel very blessed that he is showing all these positive signs to us. There are many Prader Willi children that just lay there and can’t move a muscle.

We are all very excited this weekend because Papi and Nana are coming in from Hawaii to see the kids and meet Makoa for the first time. They will be here this weekend and then LaLa comes on Monday. We are going to be very busy, but I’m so grateful to spend sometime with all of them, especially Papi and Nana as they don’t get up here that often. They were able to piggy-back the trip down here off their journey to UCSF Moffit Hospital in San Francisco. For those of you who don’t know, my Dad (Papi) has a very rare disease called Primary Progressive Aphasia.  PPA is a rare neurological disorder that effects language function amongst other things.  Apparently I’m a magnet for rare genetic disorders between Makoa and my Dad.  Who knows, maybe having to deal with my Dad and take him places like the Mayo Clinic is just preparing me for challenges we will face with Makoa.

I’m sure I’ll dive into the details of my Dad’s illness and struggles at some point, but it will probably be a pretty long blog, so I’ll save it for another day.  Above all else, we want him to know how much we love and care about him, and that we are looking forward to everyone spending some quality time together.

On a brighter note, we were fortunate to welcome our Nephew, Kyle McGraw Neumeier, into the world today.  Everything for Kevin and Angie went perfectly and both Mom and baby are doing fantastic.  I got up early and headed down to the hospital so I could be there and see Kyle before I headed off to work.  I had been praying that everything go smoothly for them and was so thankful and relieved that everything went so well.  I’m thankful that he is healthy and, while I treasure the experience, didn’t want them to have to endure what we went through.  For some odd reason, it was a great weight that was lifted off my shoulders, it completely renewed my faith in the whole process.

As for Kyle, he is HUGE… 8lbs 15oz.  He looks like a tank, in fact, that’s what I’ve decided I’m going to call him… “Tank”.  He’s a big boy, at least twice the size of Makoa, and we are so happy for Kevin, Angie, Sam, and the rest of our family.  We are all truly blessed!

Kyle “The Tank” Neumeier

Little Mad Man

23 Feb

Most parents don’t want to have their children cry, but that’s not the case for us.  Part of the Prader Willi Syndrome is the low muscle tone which in turn effects his vocal prowess.  To Tiffany and I, he is very much like our other children.  Makoa definitely takes longer to eat, but if we were first time parents, we wouldn’t really think much of it.  Really, the only alarm for us has been the fact that he doesn’t cry.  Some might say we have the perfect baby because he doesn’t cry.  I agree that he’s the perfect baby, but we really love it when he gets “feisty” as we say.

The last couple days have been great as we have seen him become more active and vocalize his displeasure if he hungry or getting too many kisses from his big brother.

Headshots by Tiffany

19 Feb

How cute is this?  He already loves the camera…

February 16th 2010

16 Feb

We started Chinese New Year out with a bang by paying a visit to Makoa’s Pediatric Endocrinologist.  Her office is very close to my work, in fact, I was able to walk and drop off paperwork to her last week.  We drove down there on Monday with Makoa and spent a good hour talking with her about the other kids she is treating as well as what suggestions she has for us regarding treatment.  In consulting with Dr. Jain (our Endocrinologist) and Dr. Miller (PWS expert if Florida), we’ve established a course of action that we all feel will give Makoa the best chance for a normal life.

We definitely have the ball rolling in terms of treatment for him.  We’ve already had a visit from the case worker and physical therapist who both evaluated Makoa.  We continue to have our weekly appointments with our Pediatrician and I’m happy to report that Makoa is up to 6lbs 12oz.  We’ve been given instructions to make sure there is lots of stimulation around him which is obviously not a problem in this house.

Yes, Makoa is actually in the swing. Between Sammy and Nainoa, there is no shortage of noise and stimulation for the little man.

He’s looking great!

February 13th 2010

13 Feb

Today was absolutely wonderful.  It’s really the first chance we’ve had to spend time together as a family, and we really made the most of it.  We started off early by going to Kaialani’s softball practice.  I continue to be amazed her.  We had multiple dad’s label her as the “stud” and very thankful that she was on the team.  They asked what we’ve done to develop her skills and when we told them “nothing”, they had a hard time believing that she’s really that good.  Of course, Kaia has a way of making us laugh.  As soon as she was done with practice, she said:  ”Ugh!  I’m so hot, I want to get out of these sweats and throw on a sun-dress!”  An athlete and fashion diva?  We are truly blessed!

After her practice, I took both of the kids to Play It Again Sports to get Kaia a new bat and bag.  We picked up some lunch on the way back and brought it back to Tiff who was hanging out with Makoa and giving him a bath. We ate lunch an watched a little bit of the olympics and then I got to do something I haven’t done in months… take a nap. I laid down with Nainoa and slept for over two hours.  It was absolutely wonderful.

After we woke up from naps, we all went up to the “top-of-the-hill” and hit some golf balls.  Between baseball and golf, Nainoa has a future in one of the sports.  Just look at his form!

Kaia got in on the action and both kids flipped the “competitive switch” and were trying to out-hit each other.  I’m not sure who won, but I can tell you that both Tiff and I are the biggest winners.

As for Makoa, things seem to be looking up.  He is now 6lbs 10oz and eating 80 cc’s a feeding.  How do we know this?  Well, we paid a trip to the pediatrician this morning because he had a really “goopy” eye, with all kinds of green stuff pouring out.  He wouldn’t be a Breeden without having an eye infection, so the Doctor prescribed some Vigamox as a remedy.  Between that and Aquafor, we really need to buy some stock in these companies.  Sometimes I feel like we are single handedly keeping them in business.

We are definitely having our ups-and-downs as both a couple and as a family.  Now that I’m back at work and driving over an hour each way, Tiffany has been left to carry the majority of the weight on her shoulders.  Obviously, I would love to be there for every appointment and every little step that Makoa takes, but I simply can’t.  Professionally, I’m in the most amazing situation of my life.  I’ve been given a great deal of responsibility of managing, not only my US team, but people in three other countries as well.  It’s a delicate balance between work and home-life, and I’m really trying to help Tiff out whenever I am home.

I have decided that since tomorrow is the official start of the Chinese New Year, we are going to get 2010 started at the same time.  It has been an interesting January and February thus far and I’m looking forward to what the rest of the year brings.  We have an appointment with the pediatric endocrinologist on Monday to discuss the next steps for Makoa.  We are looking forward to getting the next chapter in our journey started, so I say to all of you:  ”kung hei fat choi”.

The Boys…

12 Feb

February 10th 2010

10 Feb

Good news… Nainoa is back with us and feeling much better. So much so that he decided to try and top his sister with his on-camera skills. He needs a little work with holding the camera, but I think he did a pretty good job.

Nainoa is such a sweet boy and I have no doubt he is going to be a fantastic older brother.

Makoa had his first appointment with his new pediatrician today which went very well, Tiffany really liked her. The little man remained around the same weight, punching in at 6lbs 5oz which is fine because that means he’s not losing any weight. I have a feeling we are going to become well known around the doctors office. She wants to make sure we are properly monitoring Makoa’s weight so she wants to see him each week.

February 9th 2010

9 Feb

Tiffany and I are both a little tired today and it has nothing to do with Makoa, he was absolutely perfect last night. Nainoa was not feeling well and was up every hour which made for a very long evening. We thought at first it was pink-eye, but when he started throwing-up this afternoon we thought it would be a good idea to get him in to see the doctor and out-of-the-house. Apparently it’s just the 24 hour flu, but nevertheless Grammy whisked him off to her house for the night just to be safe. So once again, we’re missing one at home.

I think we have a new on-air personality developing with Kaialani. She decided to take the camera and shoot some footage herself. Here is the result…

February 8th 2010

8 Feb

I apologize for the late post, but it’s 11:30 and I just got home. Part of being the provider for you family means staying late sometimes in order to meet deadlines. On the positive side, the usual 1.5 hour drive home took a mere 20 minutes. You have to love L.A. traffic!

Makoa is adjusting well to his new life with the rest of the Breeden ohana. I imagine it’s quite peaceful without alarms going off and have tubes and pads attached to him. Then again, there is a new type of “noise” with his big brother that he must get used to. Speaking of Nainoa, he was kind enough to make us remember that he shouldn’t be overlooked as he revealed a pretty sweet case of pink-eye this morning. Oh the joys of parenthood, never a dull moment, and definitely never a break! That’s just fine for this party-of-five though.

I hope to have some additional updates and videos to post up tomorrow. Until then, thank you and goodnight!

February 7th 2010

7 Feb

It’s only appropriate that we get to bring Makoa home on God’s day.  Exactly one month and two days after Makoa entered the NICU at Torrance Memorial, he has joined our family at our home in Glendale.  It has been extremely difficult and challenging, but unbelievably rewarding at the same time.  I feel like the richest man in the world today, not only for the many fruits of life that God has bestowed on my family, but merely sitting on the couch at with Makoa on my chest.  We are truly blessed!

I would like to say a special thank you to Stacey, Julie, Liz, Amanda, and the rest of the NICU nursing staff for their amazing support of our family.  Also the doctors at Torrance Memorial for always looking out for Makoa and really caring about his progress.  Most of all, I’d like to thank all of you whom have been praying for us, offering to help,and supporting us throughout.  It’s above and beyond anything we could have ever expected and while I hope to repay the favor someday, for now I simply say thank you from the bottom of my heart.

We took a bunch of videos today so I thought we’d cut the chatter and just let you watch and share in our joy.  We are very aware that there will still be challenges ahead, but we are ready to take them head-on.  I will continue to update this blog regularly so please check back often.

This is Stacey.  She’s just the best!

The Breeden Ohana together at last!