Baby Makoa

It has been a while since our last post. Sorry. We have been very busy. Sold a house, moved, bought a new house, Nainoas 5th birthday, broken arm, remodeled the house, started new schools, moved into new house, Christmas, anniversary, New Years, Makoa 2nd birthday, trip to Hawaii… I sure I have missed something, but you get the point. Everyone is enjoying being settled, loving El Segundo, living on a cul de sac, and school. Couldn’t ask for more. Here are a few pictures over the last couple months. Enjoy!!!

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 now 9 months and moving right along. He rolls all over the house to get to where he needs to go. He is now up on all fours and just about ready to go. He also loves to stand on everything. Loves to talk and tell his brother and sister lots of stories. Everybody is so impressed with him.
Oh and by the way he now has 6 teeth. All 4 top teeth at once poor little man!!!

Sorry it has been so long. Linds and I had such a great time on our vacation. Missed the kids but so nice to be together. We needed it. Thanks to Grammy and Papa for taking care of our kids.
Makoa is getting so big, he is now
7 months, has two teeth, sitting up, and
getting stronger every day.
He is eating all kids of food, chicken, ground beef, ground turkey,black beans, pinto beans, lentials and all kinds of veggies. Could you beieve that most of it is all home made. Who would of thought. The healthiest kid I have had!!!
Any way such a happy little man he gets and gives so much love.
Here are some new pictures.
Enjoy!!!

Linds and I are off to Turks and Caicos with no kids. This is a much needed vacation, but going to be hard to leave my little kids behind. Altough no better people then Grammy and Papa to be watching them. They are in good hands. I am really going to try and let go and relax.
Makoa is now 6 months old and starting to try and sit and loves to smile.
Please say prayers for us to enjoy and have a safe trip.

It’s official Kaialani is done with Kindergarten. Nainoa is done with his first year of preschool. And summer is here. Yeah!!!
Makoa has started eating soilds and loving them. He continues to get stronger every day. He is so interested in the world around him.
Here are a few pictures, he is loving his cousin Kyle.

Can you believe it!!! Makoa is doing so well. He is well over 12 lbs, rolling over, cooing, so many smiles, and his head is just about under control.
He has been very busy with trips to Palm Springs, weekends at Grammy and Papa’s, and his first Dodger game. We are all so impressed with his fearless attitude and his endless smiles.
Thank you for all the good thoughts and prayers!!!

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!