May 12th 2010

12 May

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.

Huntington Memorial

11 May

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.

4 months

5 May

4 months already. Makoa now weighs 11.7 lbs, and is 23.5 inches long, he is on the charts!!! He also has meet all his congnitive marks. Little behind is gross motor, but just in the neck, everything else is right on track. So close with the holding of his head. Loves his sister and brother, his hands, smiling, and his little stuffed hippo. He is such a fighter and such a hard worker. We are soooo proud of him.
Do I have the best pouty face or what?

Back to Reality

30 Apr

Back from Hawaii and back to reality. School, doctor appts, lots of therapy, and of course tee ball games and sports camps. That’s reality and I wouldn’t have it any other way. I am so blessed, thanks to Linds that I am the one that gets to be here for all this.

Makoa is doing great, 11.5 lbs and laughing, smiling, rolling fom side to side, ( even stomach to back a few times) and holding up his head. He continues to amazes his doctors.

There is so much love for this little man, here he is with his favorite big sister.

Hawaii update

21 Apr

First off I have to say that my kids were angels for me on the planes. They came through huge.

We have been busy the last couple of days. Papi ( Linds dad), Lala (Linds mom), Kaialani, Nainoa, Makoa and me went for a hike, not any hike but to the top of Diamod Head. I am so proud of Kaialani and Nainoa they made it to the top. And with no whinning. We also have been at the Outrigger enjoying the sun and surf, the zoo, and just hanging out at the house. My little man is so good he just goes with the flow.

Linds comes in tomorrow for all the activities, should be fun.  Here are some pictures so far.

Enjoy!!

Paradise here we come

17 Apr

Makoa is off for his first trip to Hawaii. It is Linds grandma 90, dad 60 and stepdad 68. Don’t know what has gotten into me, I am taking all three kids by myself. Not to mention 2 out of the three are sick. Linds is meeting us on Wednesday Wish me luck and pray for me.

Palm springs weekend

11 Apr

Makoa has now taken his second trip the Palm Springs. We all love it out there. Lots of golf, swimming, and sunshine.
Here is a picutre of him taking a bath in Grammy’s sink. Look at the rolls!!!

3 months

7 Apr

Can you believe that it has already been 3 months since our little man has bleesed us with his prescence.
He is keeping us very busy, lots of doctor apptoments, pt, ot, is( infant stem) and soon oral movement. He has also start his growth hormone about a month ago. He is now weighing in at more then doubled his birth weight, 10.4 lbs.

Whether it is all that we have been doing for him, or just his fearless attitiude, or all your prayers, I don’t know, but he is truley amazing. The dr. just said on Monday that he is the most alert and active baby she has seen with PWS. He has also started to smile whenever he hears our voices (especially daddy and Kaialani) and it melts our hearts.

I am going to try an take over blogging (new for me) and start posting more often to keep you all up to date on our little man’s progress as Linds has a full plate at work. Please contuine to pray for Makoa, it is working more than you know.
Tiff

March 19th 2010

19 Mar

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…

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!