First Shiner!

Landon took a spill the other day at my moms house, and now has his first black eye. Poor guy, he was running and having so much fun and he got ahead of himself and tripped and fell. I felt so bad for him. His eye doesn't look as bad as I imagined it would, but it still breaks my heart. I know he is a little boy, and this is one of many bumps and bruises he will get...but I was hoping he would be a little bit older first.

The scrape under the nose is from a previous fall running at Starbucks. He looks so peaceful, and needless to say it has not slowed him down any at all. In fact other than right after it happened, he has been his normal self. Full of constant movement, curiosity, and love!

Hair Cut!

Landon got his summer hair cut yesterday! I asked the lady to trim and fade it, yea umm she apparently didn't understand. It is much shorter than we wanted it, but at least he will be in cool in this warm Arizona weather! And, it will grow back. His hair grows really quick so maybe we can go longer between hair cuts this time. The lady wanted to buzz it, and I told her absolutely not, I can do that at home by myself...ha ha.

Front View of his haircut.

Back view of his haircut.

Geneticist Appointment 5/4/2010

Scott and I took Landon to Phoenix yesterday for his check up with the geneticist. They did all the usual stuff weight, height, head circumfrance, etc. He hadn't changed much except he gained 6 oz from his 15 month appointment so he now weighs 22 lbs and 8 oz. His head is 50 inches and he is still 33.75 inches long!

They said he looked great. He is on par for development...he is normal and above normal in all areas. They were all very impressed that he now has 30 asl sign words that he uses all of the time. They also loved that he has 3 animal sounds...cow, lion, and pig!

We are keeping his diet the same...20-30 grams of fat a day and the rest low fat. We will be staying on Lipistart until he is 2. He is to stay on his Zinc and on the 4ml of Levocarnitine 3x/day.

The only thing they really brought up was that he should start stringing 2 words together soon (like bye-bye, uh oh, etc). And that hopefully he will start adding more actual words to his vocab, which he will he is still in the normal range according to his pediatrician!

We don't go back until September since he is doing so well. They told us again this visit that everytime they see him, the milder form of the disorder they believe he has. They told us, "He is on the very mild end of the spectrum for VLCADD!" So, we are very happy with this. They also told us we only really have to worry when he gets sick, we are doing everything right with him because he has been so healthy and is doing so incredibly well!

We got our letter to apply for SSI, and now all we are waiting on is to hear back about his labs from his blood draw! They are also supposed to get back to us to see if Insurance will cover a blood test to see where his exact dna mutation is so we can have it to compare to future children. Hopefully they will, but we have to wait and see.

We had a great appointment, and are thrilled with how well he is doing!

15 months!

Wow, sorry we have been MIA lately! Life has been hectic and busy, but in a good way!

Landon turned 15 months on the 19th, and he is into everything! His stats are:

Height: 33.75 inches (+97%)

Weight: 24.2 lbs (25-50%)

So, my little guy is still a big guy! He is growing by leaps and bounds, he has 25 + sign language signs, he has about 10-20 words as well.

He loves to climb all over everything, but specifically the kitchen table to get to cups or computers or whatever else he can find up there! He is really into reading books, playing with balloons, going on rides in his car, and much much more.

He has learned a few animal sounds and they are so cute when you ask him to say them. He will tell you that a cow says "moo" and that a lion says "roar" (but it sounds like a growl!). He has a book with animal pcitures and he loves to read it over and over and over again, it's so much fun!

My favorite thing that he does now is if you ask him "Who's Landon?" he will point to himself, so stinking cute!

Other things that Landon does: he loves to talk on the phone and says "hi" and "bye", he loves to chase Boomer around the house, loves to go outside and play in the dirt and runa round the back yward and climb on our view fence, he loves to put on all of our shoes and walk around the house in them, he loves to squeal, is a pro at throwing fits, and loves to play the piano at my mom's house.

I will post a pic as soon as I get it off of our camera, which is currently dead...boo.

Little Gym

We have been going to Little Gym since November and Landon absolutely loves it. I love it to because it gets us out of the hosue for awhile, as well as giving him social interactions with other kids his age. Since he is not in day care, I feel much better that he is able to interact and play with kids his age. So here are some pictures from our Little Gym class!

Landon's Favorite Thing at Little Gym is the parachute. He knows where they keep it and always try to coerce them into getting it out...sometimes it works!

Playing with the balls is so much fun. Landon enjoys picking them up and then throwing them or kicking them!

Practicing our bar skills!

Walking on the beam with Mr. Dave.

The bars have become our favorite place recently.

Taking a breather inside the donut mat.

Playing with Mr. Dave on the big red mat!

Bubbles are the best way to end our class!

Little Model

I took this picture of Landon the other day after he got his hair cut. We were watching daddy get his haircut, and Landon posed like this leaning on the couch. Scott and I both thought he looked like he was doing a photo spread for GQ!

Geneticist's Appointment

Landon and I made the Treck up to Phoenix on Tuesday for our Geneticists Appointment. This was only a check-up, and it went really well. I talked to them about his fat intake, cooking oils, development, SSI, his diet, how he's doing, protocol for when he is sick, and medical ID bracelets. I also picked their brain about knowledge of his particular gene mutation, and what made him "mild" and non-cardiac as well as if we have future children what their form of the disorder would be. Unfortunately we did have to get blood work done, the worst part of it all. Hopefully we will get the results back on Monday.

The Nutritionist and I went over his diet, and they said we are doing great with it! Which I am very excited about. They uped his fat intake to 20g a day, so that means we can be more liberal on what we give him...which I am super happy about! We also decided that using Walnut Oil to cook with is the best bet right now. They would prefer MCT Oil, but since it is $50 a bottle, Walnut Oil works great! We also talked about introducing fish into his diet. We haven't actually done this yet, and they were nice enough to send me a chart of the different types of seafood and their fat and calories. So we can just look it up before buying it and know which ones Landon can have all the time, and which ones should be more on a limited basis. I feel great about his diet now, and knowing that we are doing things right! I also asked them about MCT butter (or is it margarine..I forget right now), that my friend Fie told me about! Apparently a pharmaceutical company in Germany makes it and sells it. You have to have a prescription to get it, so they are going to look into it and let me know about it. I hope we cna get some, it would make cooking and other stuff much easier...especially baking.

The Geneticist came after the Nutritionist and checked Landon over. He said he looked great, and was doing great! They want to do an Echo Cardiogram on his heart when we go back in May, just to make sure that they aren't missing anything. They are positive it is fine, they just want to reassure themselves, and us I think.

I talked in great deal to the Geneticist about further children and the New Born screening. I learned a lot of useful and interesting information. If we do have another child that is affected with the disorder, they will ne no worse than Landon. So, that makes us feel a lot better about having more children. They will still only have a 1:4 chance of having the disorder, but since it is the same gene mutation, it will not be any worse than Landon's type of the disorder!

The Geneticist and the Nutritionist is also putting a letter together for us so we can try and apply for SSI. Hopefully Landon can get it, it would help us a lot with his medical expenses and formula. SSI is now finally accepting metabolic conditions for the program..so here is to hoping we can get accepted.

We also decided that in the near future it would probably be a good idea to get Landon a Medical ID Bracelet. We aren't sure what kind yet, but just a simple one that he only has to wear if he is away from us. That way if something were to happen, they would know about his disorder and what to do until he could get to a facility with doctors who know him, or about his disorder.

So, we are now waiting for blood work, and to hear when and where they want us to do the Echo. Our pedi would like it to be done down here with an amazing Pedi Cardioligist that he knows. I will let them iron all that out and tell me when and where to have it done!