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.

4 Responses to “February 1st 2010”

  1. The Kalama Ohana 02. Feb, 2010 at 12:46 am #

    It’s getting closerrrrr…exciting homecoming is just around the corner…God is good..all the time!! All the time…God is Good!!!!

  2. Aimee & Mike 02. Feb, 2010 at 12:54 pm #

    We are so happy that your little guy can soon go home!! That is fantastic news! Glad that you are getting amazing support from nurses, staff and expereinced parents. You’re always in our thoughts.

  3. tom compere 02. Feb, 2010 at 3:01 pm #

    Hi Lindsay,

    I just heard about you and your son from Susan Hedstrom. We have a 4 year old boy with PWS and are happy to share information. We have a LOT of resources. We live in West LA. Please send us an email.

    All the best!

    Tom and Renay

  4. Lala 02. Feb, 2010 at 10:31 pm #

    We are grateful to you, Tom and Renay, for your willingness to share with our family your stories of hope and encouragement…

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