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Happy Birthday Makoa!

17 Jan

I know, I know, it’s a few days late, but I thought it would be good to reflect a little on the past year before posting on Makoa’s progress. First off, my apologies for not posting more often. Both Tiffany and I have been extremely busy the last few months, which is no excuse, and we will do our best to post more frequently throughout the year.

As for Makoa, what can I say… he continues to amaze us everyday and he is an inspiration to everyone he comes in contact with. Makoa has really begun to develop his own sweet and wonderful personality, he lights up the world with his smile and warms up our hearts. From a medical standpoint, he is right on par with the average one-year-old. He hasn’t started walking yet, but he is crawling and standing up holding on to things, it’s only a matter of time before he’ll be cruising around the house.

We have a pretty solid routine going now. He has Physical Therapy and Occupational Therapy twice a week and we continue to give him his HGH shot each night along with a B12 shot every three days to help boost stamina. His food regiment consists of mostly organic foods with a heavy focus on things like avocado and beans. Everyone in the house has started to eat healthier because of Makoa which is just another reason why we are so blessed to have him in our life.

We’ve had our share of travels this past year. Two trips to Hawaii, one in April and the other in December. In April, he was gifted his Hawaiian name by our dear friend and Kapuna Cathy Ostrem who presented him with: Kealaohiamaikalani which means “bringing forth the strength amidst adversity”. He truly lives up to his Hawaiian name every single day.

We also made a trip to Gainseville FL in October to see one of the leading experts in PWS who, as an endocrinologist, treats a large number of PWS patients from around the country. We met with Dr. Miller and her staff to evaluate Makoa’s progress. We also had the opportunity to meet a few other families with PWS and talk about our experiences. I wasn’t sure about how I would feel meeting and seeing other children with PWS, but it turned out to be a wonderful experience meeting the other families. Dr. Miller was so impressed with Makoa and his progress, she at one point stated: “I am absolutely shocked at how well he is doing, what a little rock star!” Words any parent would want to hear.

There are of course still many challenges that we must face with Makoa, but we are optimistic for the future. It’s really the only thing you can be; optimistic. One look into Makoa’s eyes, one glimpse of that big grin on his face, and it absolutely melts your heart. At the same time, it brings us peace knowing that God has a wonderful plan in store for him and for our family.

We are truly blessed, not only to have Makoa as our son, but also to have the friends and family who support us. The outpouring of love, support, and prayers we have received in the last year have been overwhelming, but I want you to know how much Tiffany and I appreciate it. This experience has been nothing short of a life-changer in the most positive way. It puts everything in perspective and really makes you understand what life is really about.

Here are some photos of the family from our latest trip to Hawaii. May all of you have a healthy and prosperous 2011!

March 9th 2010

9 Mar

First off, I have to apologize for being an absolute terrible blogger. I know there are many of you who enjoy reading up on Makoa’s progress and I haven’t done a very good job of keeping up. It’s not so much that I haven’t wanted too, but I have been extremely busy at work this past couple of weeks preparing for a new brand launch. On top of that, my Dad and Kathy were in town to meet Makoa for the first time, and we even celebrated Kaialani’s 6th birthday! Well… enough about my blogging transgressions, on to our sweet little man.

Quite a lot has happened with Makoa since we last checked in. He now weighs-in at 7lbs 15oz and is really starting to pack-it-on. He has another doctors appointment this week and we’re hopeful that he will eclipse the 8lb mark. He’s started to do some really fun things like pick his head up and roll his body-weight from side-to-side. His progress makes us SO hopeful for our future together, there aren’t even words to describe it.

There have of course been challenges along the way. Most have surrounded insurance and the constant battles we have to fight in order to get Makoa seen by the doctors that can effectively treat his condition. So far, the insurance has denied every single referral and claim we’ve made. I really wonder what we pay for? My son has a rare syndrome and needs specialists who are familiar with Prader Willi Syndrome. This isn’t allergies or the flu, don’t try and send me to obscure doctors who know nothing about PWS. It isn’t acceptable and I can tell you right now that we won’t stand for anything but the best.

We are hoping that the insurance will start reimbursing us for some of the things we’ve had to pay for. Makoa has already seen the top Pediatric Endocrinologist in LA specializing in PWS and we’ve started him on growth hormones. The shots we give him are daily and he will take them for the rest-of-his-life. We had someone from the drug company come out and teach our family how to administer the shot to Makoa. It doesn’t hurt him, but it does emotionally scar Mom and Dad having to puncture his leg every night. I suppose in time we will get us to it.

Even though I’m slammed at work, I’m really going to try and keep blogging as much as I can. Tiffany is still apprehensive about writing on here, but I’m sure if enough of you bug her she might hop on here and write a post every-so-often. Until then, here are some videos from the past couple of weeks… I think we’re about four practices away from the family Von-Trapp. Ha!

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!

Welcome Home Makoa

7 Feb

It’s official…  Makoa is home with us.  I can’t begin to describe the immense feelings of joy both Tiffany and I have right now.  There is much to be done at the house so I will make this brief, but I wanted to thank each and every one of you for your thoughts, prayers, and support.  Here is a picture of Makoa snuggled up in his new hangout spot gearing up for the big game today.

February 1st 2010

1 Feb

It’s a new month, and with it comes new challenges and adventures. Makoa has been feeding well over the last couple of days, averaging around 40 cc’s at each feeding. The Doctors directed to up his bottle feeding to five or six a day. Tiffany has been doing most of the feedings and there is something about a Mother’s touch, because when I fed him tonight he only took 18 cc’s.

It’s definitely disappointing for me because I know he can do it, he just wasn’t having anything to do with it tonight. I was trying everything, different positions, different approach techniques, nothing was working. Tiffany was worried that she would be the only one who can get him to eat, so I’m bummed that he wouldn’t chow-down with me. The nurses were very sweet in telling me that it was probably the time and that he doesn’t feed as well at night, but he ate fine with Tiff last night.  Dang it!

He has a new nurse tonight, but she seems like she’s really “on top” of things and she had the schedule all laid out for the evening. Regardless, one of my favorites Nancy is the lead tonight and I know she’ll watch after my little man for me. It’s very apparent why the lead nurses are in that position. Stacey, Julie, Nancy, Liz, they are all amazing and do such a fantastic job at not only the medical side of things, but being extremely personal and caring about our feelings as well.

We had the head Neonatologist say that he “might” be able to go home this Friday. That would be amazing! He does need to keep feeding well, so I’m hoping our little miscue doesn’t push the date back. I always thought it would be 4-6 weeks. We just hit #4 so I pray that we will be getting him home soon.

Once that time comes, we can begin the next chapter with Makoa. While I still remain optimistic that he could have tested for a false positive for PWS, we have to be realistic that he may in fact have it. We are being very proactive about getting a team in place for what lies ahead. We are going to make sure that Makoa will be seen by the best-of-the-best.   There are a couple people who have gone above and beyond to help us and I’d like to thank the them by name: Mark Davis, Jim Bostwick and Ken Cribbs. These gentleman have really stepped up to help us get in touch with the top people in the field and we really appreciate all they have done.

We are so blessed that we have the opportunity to be connected with these people. We continue to pray that we get Makoa to the right people who can help him and afford him the best opportunity to thrive and be healthy. We also pray that the insurance is handled properly and we are able to see the people who will best treat Makoa. You always hear horror stories about the insurance companies, but we are hopeful that Anthem will step-up and do what’s right.

January 26th 2010

26 Jan

It doesn’t happen very often, but I was caught completely off-guard today.  As you know, Makoa has been progressing nicely and we finally had a diagnosis of Icthyosis Syndrome.  It is, of course, the mantra of the NICU; Take it one day at a time.  I think we might have gotten ahead of ourselves because the Doctor’s dropped a bombshell on us today.

I received a message this afternoon from the NICU asking to call the neonatologist.  I immediately called and the Neonatologist told me that the test for Prader Willi Syndrome (PWS) came back positive.  She told us that the staff was completely shocked by this because he isn’t really showing signs of it.  I have echoed the same sentiment since the first day we were told to “look it up online”.  I have always maintained that he doesn’t have most of the symptoms that are listed.  The undescended testes are probably the biggest commonality that Makoa has in the syndrome, but that is also accounted for in the X-Link Icthyosis according to the Doctors.

I immediately left work to head down and be with Tiffany at the hospital.  Once I arrived, I hoped on the phone with the geneticist from Harbor UCLA and asked him a few questions.  They were general things like:  ”Can PWS in the 15th chromosome be at all confused with the X-Link Ichthyosis?”, “If his symptoms are a-typical for PWS, should we have an additional test done just to confirm?”  His answers were pretty straight forward:  I don’t think so, and I don’t think so.  He did recommend the same thing that the head neonatologist said when we received the Icthyosis diagnosis, you should probably see one of the Pediatric Endocrinologists at Children’s Hospital of LA.  Oh the irony!

Perhaps I’m in denial.  I’m not really sure.  I just don’t feel like he has PWS from what I’ve read.  Then again, I’m not a doctor and my knowledge is coming from 10th grade biology and Google.  My biggest concern after tonight is Tiffany.  This entire process has been very difficult on our entire family, driving all over-the-place, sleeping at different houses, spending all day and night at the hospital.  This was the straw that “broke the camels back” for her and it breaks my heart.

I married Tiffany for a number of reasons, probably too many to list here.  The main reason I think that we work so well together is that we “fill in the holes”.  By “fill in the holes” I mean we compliment each other in that she picks me up and fills in the weakness that I have and I do the same for her in turn.  This journey has been probably the most difficult experience of our young and budding marriage.  I have asked Tiffany to put her faith in God and realize that He has chosen Makoa for us and we are going to be the best parents for this little man.

Through the Grace of God I have a very different outlook on the situation.  There is nothing wrong with Tiffany being upset and struggling with what the doctors have told us.  I think it’s only natural to feel this way, especially as a mother who’s baby is still in the NICU.  I wish I could give her the gift that God has placed on my heart, but sadly I can’t.  I keep encouraging her to open her heart to God and let him take over.  I continue that pray that God lifts Tiffany up and comforts her and bring her closer to Him.  That is my biggest prayer.

I really can’t explain the transformation that God has done in my life, but all I can tell you that it is nothing short of amazing.  I must give Him all the glory for answering my prayers and transforming me into the Man I am and allowing me to throw away childish things.  I’ve also found that since God has equipped me to be a strong and faithful Christian, I must open my heard and listen to God’s word to me.  One of which is this blog.

I was actually writing a mid-day update today when I got the call from the NICU.  I was commenting how amazing this experience with the Blog has been.  People from all over the world have been involved in our “viral prayer” and I know it has had a profound impact on our family and especially Makoa.  It’s been amazing to hear of other people who are in similar situations as us, or just need prayers.  Even one of the NICU nurses, Lenny, asked us to pray for her.  God has put it on my heart to ask for prayers from others in need as well.  So I’d like to ask all of you to take a moment to keep the following people in your prayers:

Mark & Erica Fleischauer
Lenny (NICU Nurse)
Chris Chaussee’s Niece
Chris Plaman’s Son
Ashley Harrison
The other children in the NICU

I’m sure there are other people I’m forgetting and if I have, I apologize and would like to include you. If you have someone that you would like to have added to our prayer list, please email us at prayer@babymakoa.com and we’ll make sure you get added to the list.

We are so grateful for the love and support our friends and family have shown us. I’m not sure what the future holds for our family, but for the first time in my life I am moving forward without fear in my heart. Since I have asked God to guide me and to give me strength to lead my family, He has blessed me and given me a most wonderful gift. I will continue to get up every morning and put one foot in front of the other, excited to see what life has in store. Most of all, I will make sure to be there for my Wife when she needs someone to lean on, and the best Father I can be to my three beautiful children. That is my solemn vow.

January 21st 2010

21 Jan

It’s amazing how much you can tell about Makoa’s personality even after just two weeks.  After tonight, I’m calling him my “Little Michael Phelps” for a couple reasons.  The first is obvious, the doctors had such a hard time extracting him from the womb because they said he was “swimming in there”.  The second reason is Makoa continuously beats his feedings every time he hits the bottle.  That’s right people, we hit the 45 cc mark tonight!  Praise God!

This is a huge milestone as it’s the minimum amount he must drink for each of his eight feedings in order for him to be released.  We still have a long way to go, but just seeing him pound an entire bottle is awesome.  Tiffany stayed home with Nainoa tonight so I actually got to go in by myself and feed him.  Tiffany has been working with the feeding specialist everyday, but I have been keeping close attention when she feeds him and asking questions.

Tonight I had the opportunity to feed Makoa and it was great.  This wasn’t my first time to feed him on my own, but it was great to see him eat well and not have any desaturations (The d-sats can happen when he forgets to breathe while he’s eating).  It was amazing to see him react to my voice and continue to push for the last drop of the bottle.  Apparently, you’re not supposed to talk to them, rock them, or pat them while they are eating.  The feeding specialist say you’re supposed to let them focus and talking actually distracts them.  I have to say I disagree because when that little man started falling asleep, I gave him positive encouragement and a little motivation and he perked right up.  In case you were wondering I told him: “You’re doing great buddy, you don’t want to eat more for Mommy than me do you?  It’s your time to shine little man!”  It seemed to work wonders.

Hi Papa!

It was a great day all around for Makoa.  Papa came back from China and had quality bonding time with him, and of course he also got some good loves from Mommy.  Here is a video Tiffany shot today of Makoa… Enjoy.

January 19th 2010

19 Jan

Well… we’ve reached Makoa’s gestational due date. It’s amazing to think that he has now been with us for two weeks. It’s also scary to think that he might not be here if we hadn’t of gotten him out when we did. It’s only by the Grace of God that Makoa is here with us and we thank God everyday that He has brought this little angel into our lives.

It’s been a roller coaster two weeks, but it has been the best two weeks of my life. Not only getting the opportunity to watch Makoa get stronger and develop his own tenacious personality, but also seeing our growth as a family in God. Everyday is a little bit better than the last, but we are making sure we take it one day at a time and not to get ahead of ourselves. We have some of the major genetic tests coming back this week and we are hopeful that they will all come back negative and confirm what we feel in our hearts; a little boy that  needs some extra calories and a little time to grow.

Hey Mom, do you have any tape?  Cause I’m ripped!

It was another day of new personal bests for Makoa, he ate 25 cc’s at his 8 PM feeding.  Now that he’s showing an active interest in the bottle feeding, we are eager for him to start chomping down the whole thing.  We understand that it’s a slow process and it will take him some time for him to “get it down” and develop the muscles for feeding, but we have made sure to inform Makoa of what he needs to do in order to come home and join our family.  Once again, we have appealed to his competitive spirit and we hope his Breeden/Neumeier sides will come out and he’ll hop on board the milk train.

He’s such a sweet boy and it absolutely melts your heart every time you hold him.  We continue to be amazed at the support, love, and prayers that our family and friends have been sending Makoa’s way.  Everyday he’s awake for a little bit longer, squirming a little bit more, and definitely getting much stronger.  We know it’s because of God and the love from all of you!

Thank you for all of my prayers!

Thank You Cathy!

16 Jan

Mahalo Nui Loa Aunty Cathy!

Na Aumakua mai ka lā hiki….a ka lā kau.
Mai ka hoʻoku…a ka halawai.
Na Aumakua ia ka hina kua…ia ka hina alo.
Ia kaʻa ʻakau i ka lani.
O kihā i ka lani
ʻOwe i ka lani
Nunulu i ka lani
Kaholo i ka lani
Eia ka pulapula a ʻoukou
ʻO Makoa Breeden.
E malama oʻia a oukou
E ulu i ka lani
E ulu i ka honua
E ulu i ka pae ʻaīna o Hawaiʻi
E ho mai ka ʻike
E ho mai ka ikaika
E ho mai ka ʻakamai
E ho mai ka maopopo pono
E ho mai kaʻike pāpālua
E ho mai ka mana