Tuesday, June 28, 2011

6/17/2011 Geneticist Appointment

Landon had a Geneticist Appointment on 6/17/11 with the Geneticist in Phoenix.It was pretty un-eventful. We went over the information from his appointment in Ft. Worth on March 10th and the changes they made to his meds, diet, etc. The geneticist agreed with them and said that the Ft. Worth Geneticist did a very good job, and he agreed with and supported and loved everything that she had done. He examined Landon to make sure that everything looked and sounded fine. No heart murmurs, his liver is no enlarged and he is very active. Landon is 37.25 inches and 31.3 lbs. The Geneticist asked if he knew his colors, also saying "well, he's 2.5 so probably not." So I told him to ask him, and Landon named them all correctly. So the geneticist said "I take it he doesn't have any intellectual delays" and I looked at him puzzled and said "no, absolutely not." He then told me he wasn't developmentally delayed either, and I said "yes, that is correct." Those things took me off guard and kid of bugged me. Landon has NEVER had any of that, and they should know that. So we explained about being in Dallas and that whole mess and why we were back there with them.

Since Landon had had blood drawn in May because he was having leg pain and we wanted to make sure it wasn't due to raised CK levels or causing other issues such as cardiomyopathy, etc. Leg pain can be the first sign that his body is breaking down his muscles and using them for energy instead of the MCT Oil that he is taking for that..it is VERY bad, if not treated (D10 IV for a period of time), then it can cause Renal Failure and kill him. I explained all of this to the Geneticist and told him that the Genetic Counselor from Ft. Worth called them to ask them about it and where to get his blood drawn, I called, and the Ft. Worth Nutritionist called as well. He told me that he NEVER got a message or anything about it and knew nothing about what was going on...ummm, this concerns the heck out me, and is not acceptable. He was going to look into it and see what happened.

So, we don't have to go back and be seen until December 16th. So they have extended his visits in between to 6 months which is great. They are still thrilled that he has only been hospitalized once in his entire life...which is apparently unheard of.

His Regiment is as follows:

6 mL MCT Oil 4X day
6 mL Levo-Carnitine 2X day
1 DHA Vitamin 1X day

I'll leave you with some pictures of the kids playing in the pool:

E loved these little fountains and splashing in them.

I could not get him out of the water, he's like a little fish!

Wednesday, June 15, 2011

Bluebonnet pics

My amazing and talented friend, Melody Hamilton, took these amazing pics of the kids and I in April in the bluebonnet fields in Garland, TX. I wanted to share them, they are my current favs and capture the children so well.

Love this one, it's so sweet!

Sweet girl!

My favorite material thing ever, thanks Andrea & Bryan; y'all are the best.

Mother & Daughter!

Typical Landon, always on the move!

My favorite as you know!

We hope to get back to Dallas soon and get some more pics by Melody, she does such a wonderful job and is such a wonderful and great friend. She has also been a rock through everything that it going on. Thanks Mel, we <3 you!

Friday, June 10, 2011

Oh, Hai!!!

Wow, it's been awhile. I don't even know where to start. There's a lot going on in our lives right now (that I will get to later, at a different time). We have been super busy. We are back in AZ and have been since 4/25, and I'll just leave it at that. We really, really miss our Dallas family and pray that we will be able to go visit them soon. They have been great and coming to visit us as much as possible until we are able to get back for a visit. I wanted to make a list of things I love and am thankful for (thanks Andrea for the idea), as well as leaving some updated pics of the kids!

20 things I love and are thankful for:

1) Without a doubt, my kids are number 1. They keep me going, make me laugh, and make life worth living. Love You Landon and E!!

2) My family. More specifically my mom, aunt, cousin, and dad. They have been my rock in the a before mentioned life issues.

3) My friends. More specifically Holly Day, Liz, Amanda, Melody, and my mommy friends!

4) Coffee, more specifically Folgers Vanilla Biscotti Coffee in my Keurig (thanks mom!) Most days, this is my sanity and the 'me time' I can get for a second!

5) My neighbors, y'all completely rock. Thanks for being so awesome, welcoming us back and helping so much. Especially Nicole, Carey, and Sophie!!

6) Cooking with the kids! We have a blast. It's a stress reliever, and Landon LOVES to be my tester. We have tried many, many things. 

7) Owls for E! Thanks to my friend Amanda I have fallen completely in Love with Owls on her, for her, and in her room. Her 1st Birthday Theme has already been decided to be Owls as well!!

8) Lollipops, or Hollipops as Landon calls them. I can bribe him to do just about anything with them!

9) Elmo, Sesame Street, & Barney! These 3 allow me to get my house work done!!

10) E's growls! She growls a lot, and without fail it always makes me laugh!

11) My FOD moms & Friends. Especially Debbie & Leslie, <3 y'all!

12) Breakfast Tacos & French Toast...the only thing I can convince Landon to eat for breakfast right now. They are super yummy, and I pack them with things that are good for him and he doesn't even know it!

13) Dr.Pepper, my Texas roots coming in here!

14) My cousin and her kids, they give me much needed comical relief daily!

15) TX BBQ, the stuff they have here sucks, bad. I miss my Tx bbq and nothing compares to it.

16) The innocence of my kids. They are so funny, and have such a simple view on life. I think all of us could use that more.

17) My Dec moms, don't know what I would do without you girls, you keep me entertained, give me advise, and make me laugh..thanks! And your LO's are super, super cute!!

18) Modern Family, HGTV, Castle, and Body of Proof...hillarious and make me think, and are a great escape from reality for a bit.

19) Peach Bellini's (when not nursing), yumm.

20) Starbucks. On the rare occasion I get to go get one, it's nice and super yummy!

Pics of the Kids:

There is nothing sweeter than this picture...including the fact that he swiped her paci!

My little book worm!

Oh, how the time flies! How can she be this big already?!?

Hey punk, give me my paci back!