Baby Makoa

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!

It was over a year ago that we had left Torrance Memorial with our dearest Makoa in hand to head home an start our journey as a family. Last Thursday, we had the opportunity to return to the hospital that all three of our children were born at for a very special reason, the birth of our niece, Rylie Jay Chandler.

Tiffany’s sister was scheduled to have a c-section on St. Patricks day so the entire family headed down to the hospital at 7am for the big day. Much has changed since we last left a year ago. Most notably, there is no swine-flu epidemic so children were allowed in the hospital. It reminded me that Makoa’s brother and sister didn’t meet him for an entire month after he was born. Besides the fact that the kids could be up in the labor and delivery room, it was also a chance for us to bring Makoa back to the NICU to see the nurses and doctors who got him going.

The highlight of the day was seeing Stacy, our most favorite nurse who was such a blessing to us. She is on maternity leave from the hospital, pregnant with her fourth baby, but she took time to come back and see Makoa. It was wonderful to spend some time with her and catch up. We are looking forward to reconnecting with her and the rest of her family when we move back down to the South Bay this summer.

After Stacy left, we stopped by the NICU to see Dr. Schwartz who not only remembered us, but was also very intrigued to see how Makoa was doing. He mentioned how he still uses us a case study with the undescended testis and that how it is so rare to have two genetic conditions (PWS & Ichthyosis). It was actually great seeing him and being able to thank him. It’s funny how either God softens your heart or those around you. We definitely didn’t get a long a first, but I’m very grateful for his diagnosis for Makoa and his quest to find out the best way to treat him.

The good news is that Tiffany was holding her own and surprisingly not emotional about returning. I think it may have been the birth of her niece and the fact that everything went perfectly. I was filled with joy but also felt a great deal of emotion, revisiting some of the experiences we had while at the hospital. While we were waiting for Tracy, we met a couple and watched their 4lb baby get wheeled off to the NICU. It was amazing how we immediately went into council mode, the husband had Tiffany back in recovery talking with his wife in no-time. The good news is their baby is doing well and that they had warning that he was undersized and they had been preparing themselves for what was to come.

All-in-all it was a great day. We saw the birth of our niece Riley Jay who is completely healthy. Everything went to plan and we had the opportunity to really enjoy the experience with Tracy and Cory. It’s kind of fun that Makoa is no longer the baby, we have another one taking that title, especially since he’s taken his first steps on his own! More to come on that….

For now, here is a photo of Riley Jay. She is cute as a button and you just want to gnaw on those cheeks. Look at those things!

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!

Makoa is once again back home with us.  He was actually released Friday afternoon once the doctors determined that his oxygen levels were high enough that he could breathe on his own without assistance.  Makoa had a follow-up appointment with the pediatrician yesterday morning and they said he’s still junky but doing okay.

For us, it’s great to have him home, but we’re still on edge with him.  Makoa is still has a ton of mucus and a pretty nasty cough, but the nice thing is the hospital really equipped us with the tools we need to make sure he’s okay.  Like I said before, Tiffany has always wanted to be a nurse, so I tell her this is the perfect opportunity because she doesn’t have to go to school and she gets to perform all these procedures.  Granted, I think it’s a little different when it’s your child, but I always try to keep it light.

We’ve been doing a wide variety of treatments since Friday.  We’re using the nebulizer, the suction machine to get everything out, and the stethoscope to make sure his lungs are clear. It has been very taxing constantly worrying about if he’s breathing okay, does he have too much phlegm, is he comfortable.  Hopefully, this thing runs its course and he really starts to clear up this week.

One good thing from all of this is that the doctors have started thinking about a plan of attack for Makoa for the flu season this fall.  There’s nothing to do at the moment, but they have brought it up to us and have made it clear that they want to have some preventative measures in place before the bugs start flying around in September.  We shall see what happens.

I’m Outta Here!

Makoa is still in the hospital and at this point, there really isn’t a set timeline for when he might get to come home.  Tiffany has been by his side the entire time (except for a quick trip home for clothes and a shower) and was feeding me updates throughout the day at work.  It seems to be a “no news is good news” type of situation.  All of the tests that have come back thus far have been negative, and if the few outstanding tests that remain were to come back positive, it wouldn’t change how they are treating Makoa.  At this point, the doctors say he needs to “work through it himself” with a little help from them of course.

I headed off to the hospital after swinging by the house and grabbing Makoa’s shot.  Of course, when I arrived, he was extremely happy to see his Daddy as always.

As you can see, he’s still a sweet little man, even hooked up to all the tubes.  They are continuing to give him nebulizer treatments and suction him out every three to four hours.  They have provided us with both machines to take home with us and even taught Tiffany how to deep-suction Makoa entering through his nose.  I know she always wanted to be a nurse and it looks like she may get her chance.  She also been administering his growth-hormone while at the hospital, and of course feeding him as well.

I have been noticing a pattern that his wheezing increases after he feeds.  If he is anything like his Daddy or sister, there could be a chance that he has a milk allergy.  We brought it up to the doctor tonight about the family history, and she thought it might be a good idea to at least “try” taking him off milk-based formula and putting him on Alimentum, which is exactly what Kaialani was on when she was a baby.  Apparently, there is also a blood-test available that will let us know whether or not he has a milk or soy allergy.  It takes a couple weeks, but we can at least draw the blood while he’s in the hospital and get it cooking.

We will see what happens, but for now we just wait.  The good news is Makoa is stable, happy, and eating.  The bad news is that we have no idea when he will be heading home.  Please keep us in your prayers.

Well… hello there. It has been a while since I have written a blog here on the site. As you’ve noticed, Tiffany has taken over blogging duties over the last month or so and has done a fantastic job. I would love to have more time to write on here, but with the 2.5+ hours I’m spending going to and from work each day, the little spare time I have, I enjoy spending with the family. The reason I am writing this blog today is that Tiffany is sitting in Huntington Memorial hospital with Makoa, who will more than likely be there for a couple of days.

This all started about 10 days ago when Makoa finally started to come down with the illness that both kids had been fighting in Hawaii. We we’re on it right from the beginning. We got him in early to our pediatrician who said to just monitor it for now and he was sounding pretty good. If is mood changed, however, she suggested we bring him back in for another check up. Last Thursday, Tiffany noticed that Makoa wasn’t his normal self, so she decided to take him back in. Our normal pediatrician had the day off, so another doctor examined him. She didn’t hear anything in his lungs, but wanted to be sure, so she sent us off the emergency room at Huntington.

We spent about 5 hours or so in the ER where they drew blood, took chest x-rays, and gave a nebulizer treatment. Everything was came back normal despite the raspiness in his voice, so the doctor was planning on sending us home, but he wanted to check his temperature one last time to make sure he didn’t have a fever. He was fine when they took it during check in, but of course when they took it now it was up to 100.9. The decision was made to keep him overnight for observation. Naturally, once he was admitted, Makoa was laughing, cooing, and eating his entire bottle. It was a short-lived stay, and he was released the next morning.

Over the weekend, he was doing splendid. We had an amazing Mother’s Day, getting Makoa baptized by Pastor Gary at LCPC. It was a magical day that we got to share with all of Tiffany’s family. The worship band even played Matt Redman’s song, You Never Let Go, especially for us and it was so unbelievably special, we cannot thank them enough.

Makoa had a scheduled follow up appointment with the doctor this morning. Just like the other days, he had been up, active, and playing all morning. He had been coughing more since Saturday, but we were told this was good and he was fighting the cold. At the appointment, they decided to give him another nebulizer treatment just like they had given him multiple times on Thursday. Unfortunately, the treatment didn’t go so well and they eventually had to call an ambulance to have him transported back to Huntington Memorial.

Apparently, this round had the adverse effects of what was supposed to happen. His saturation levels dropped down and he was not looking good. I got a panicked call from Tiff at work and immediately hopped in my car and drove to the hospital. It was around lunch time so my 1.5 hour drive only took 30 minutes which was great to be there so quick.

The medicine they used in nebulizer treatment at the doctors office was a different type then they used the week before. They gave him additional nebulizer treatments in the ambulance and once he got to the hospital. They were all the same type that had been used on him the week before. Once again, no trouble signs from this medicine. Maybe that new medicine they introduced at the doctors office was the catalyst for this whole episode but we definitely don’t know at this point.

I arrived at the hospital to find Makoa hooked up to oxygen and being poked and prodded. Wow, talk about flashbacks to the NICU. I thought we were past this? They finally got him stabilized, got an IV in, and transported him into his room in the pediatric unit. We went through the same procedures as last week, chest x-ray and blood work. This time, however, they said he would probably be there for at least two days.

That’s the latest. Makoa is stable and has been eating well, in fact, he ate 7 ounces around 7pm. He is still on oxygen, but they are just making sure he’s not stressed. We will see what happens from here. Once again, thank you to all of you for your thoughts and prayers. Hopefully we will get him back home soon.

Total bummer, but he still looks pretty darn cute.

Happy Friday everybody! Makoa measured in at 8lbs 12oz on Monday so we’re thinking he might go over the 9lb mark next week. We’re all having a great time together as a family and enjoying every moment. Here is a video with Makoa showing Tiff what he thinks about his exercises. Pretty funny…

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!

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

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.