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Look Who’s Walking!

9 May

What can I say? We are truly blessed. Makoa continues to amaze us all, this time walking by 15 months. Here is a video Tiff took today of Makoa walking to pick up his baby. Enjoy!

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!

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

Headshots by Tiffany

19 Feb

How cute is this?  He already loves the camera…

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.

Being Normal

31 Jan

Tiffany and I thought we would try being normal for 30 minutes tonight. After we fed Makoa his 8pm bottle, we decided to stop by and see Makana at Saint Rocke on our way home.  Both Tiffany and I were exhausted, but I thought it would be good for us to get out and try to do something together that didn’t revolve around a hospital, even if it was for 30 minutes.

Makana actually studied under my cousin Sonny Chillingworth and had become quite an accomplished slack-key guitarist.  His music is extremely uplifting and I’m so thankful we were able to listen in for a few minutes.  This is a video I shot tonight singing one of our favorite covers that Makana performs, slack-key style of course.

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 25th 2010

25 Jan

We heard something for the first time today from the staff in the NICU: “When you take him home”. The terminology has changed and it is beautiful. We don’t have an exact date, but we remain cautiously optimistic that it will be in within the next two weeks.

What a day for Makoa! All of Makoa’s tests for infection came back negative so all of the IV’s were removed and the antibiotics stopped. The Neonatologist that was in the delivery room commented how much bigger and stronger he was since she hadn’t seen him in a week. He was definitely feisty today and for good reason.

After I left last night, our night nurse bottle-fed him and he ate 60 cc’s and 50 cc’s. What a Rock Star! He had bottle’s again at 11am, 5:30pm, and 8pm. He didn’t finish the bottle in the last three feedings, but as we’ve said from the start, it’s all part of the process. The nurses tell us this is quite common for them to fluctuate in their feeding amounts and then they just “get it”.

We continue to pray everyday that God continues to protect Makoa and keep him strong and healthy. We are so appreciative of all of your thoughts and prayers for Makoa and our family. I’ll leave you with a picture I took tonight of our IV free little man. If you notice, his gavage feeding tube is on the other side. He was all kinds of fired-up tonight and decided to pull it out. I explained to him, “If you want it out, you know what you need to do.” Hopefully Makoa answers the call.