26 Feb Goodbye Six, Hello Seven!
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
Dan Bauchiero
Posted at 08:02h, 26 FebruaryGood to see there is no “feeling sorry for yourself” attitude going on in your world. I am reading a book called “Be The Hero” right now. It talks a lot about looking at yourself and others as the victim or the hero. Kinda cheesy book, but a great message for those going through tough times. Glad to hear the Breeden’s and Neumeier’s are all doing well!!! Miss you all!
Jeff Capell
Posted at 11:24h, 01 MarchGreat photos and I am real excited to hear how much he is eating! Go Makoa!
BOB AND MIKIE
Posted at 07:50h, 05 MarchMakoa looks wonderful and your attitude is wonderful as well.. We are so happy he is growing and showing emotions. The love he is surrounded with and the faith he is emersed in will be his strenth.. You all are incredible and an inspiration… So happy for Kevin and Angie as well.. Their new son is awesome too.. love you all, mikie and Bob…
Stacey
Posted at 14:00h, 06 MarchJust thinking about you guys this morning so I thought I would check Makoa’s blog. I am soo proud of him for taking off on his weight gain! 7 1/2 pounds! Wow!!! Sounds like everyone in the family is doing well now. I love the pictures of Makoa with his big brother and sister. Makoa looks so happy and is now thriving at home. Have a fantastic visit with your parents. Hugs to all,
Nurse Stacey 🙂