1st Haircut!

Getting Ready to start. He sat on my lap so they covered me in a cape as well. You can see how curious he was as to what was about to happen.

Landon with his cape on...just before we got started. He was starting to get a little unsure about the whole thing, and what exactly it was that we were doing.

He was not a fan of getting his hair cut. He fussed and cried through the whole thing, poor guy. I think a lot of it though was because of the sounds of the scissors snipping. He was fine until she actually started cutting his hair. The other part I think was that I had to help hold his arms down since he was swiping at her scissors when she was cutting...this I think reminded him of being held down for his blood draws and also when he had his IV in the hospital.

After he had calmed down and was sitting in the car. His hair is not that short, we swept it off to the side to see how it looked! They did trim his bangs, around the back of his neck, and around his ears. It was really long in those places, and we wanted his hair to be nice and even for his upcoming 1st Birthday photo shoot!

Merry Christmas!

We are spending the day with family and great friends, and celebrating Landon's 1st Christmas! We wanted to wish everyone a very Merry Christmas. We had a great Christmas morning, Santa was generous to everyone. We will be having Honey Baked Ham for dinner tonight, yumm. We are counting our blessings today, especially for our little guy and everything we have learned, everyone we have met, and for our great family and friends who have been our rocks through this past year. Hope everyone has a blessed Christmas, and you make many happy memories with your family and friends.

Love,

The Heise's

Landon sitting amongst the present. He wasn't too sure what to think of everything at first!

Sitting on his power wheels car! Zach was off to the side, that's why he is looking in that direction

Playing in his ball pit that Santa brought him. He loves this thing, he has been in it all morning long!

Helping Daddy unwrap presents. He really got into it once he figured it all out!

My favorite picture from this morning! He was having such a great time with everyone.

Zach showing Landon the presents.

My Mom and Boomer, hanging out.

Zach's Big Ticket Item, He got a TV to play his Xbox 360 on!

Landon playing with Mommy & Daddy!

Santa!

We took Landon to sit on Santa's lap tonight. He did very, very well. We waited in line and talked to him about Santa and telling him what he wanted for Christmas. When it was his turn Landon was great. he sat there and smiled at the camera for 2 pictures. Then he looked over and saw me standing a few feet away, and looked to his other side and saw Scott standing a few feet away, and then looked at Santa and started to get nervous. So, we stepped in and scooped him up, and picked out the picture we liked best. Overall it was a great experience, and I am glad we took him. I really like the Christmas outfit I picked out for him too, it's even cuter on him than it was in the store!

Our 1st Hospital Experience

Wednesday morning started out perfectly normal. My alarm went off at 5:00 a.m. so I could get up and give Landon his Carnitine on time. I stopped on the way to his room to make him a bottle, like I do every morning. When I went into his room he was standing in his crib whining, which is very unusual. There was also this smell...not like a dirty diaper, it was a completely different smell that I justt couldn't figure out. So I changed his diaper, gave him his medicine, and then we sat in the recliner so he could fall back asleep since he was whining when I went in there. Well, he then started choking. I couldn't figure out why, he wasn't eating anything and had already swallowed his meds. So I sat him up and he stopped choking, and cuddled up with me. But, he just would not sit still...which is very unusual when he is as tired as he was. This was my first hint that something was wrong...other than the whining. So I decided to take him into our bed, maybe he would sleep better in there. Again, he just wouldn't lay still, and then it started. He began throwing up, all over me, all over our bed, and all over himself. When it finally stopped I whiped him off, changed his clothes, and then changed his diaper because he had pooped again. Well, he had major diarhea too. This is when we began to get worried...with his disorder he CAN'T get dehydrated and throwing up and having diarhea at the same time, can get very serious very quickly. So I tried to get him to take some pedialite...he refused. So I just sat him in my lap and covered him with a blanket, and he fell right asleep. After about 1/2 hour I took him back to his room and sat him in the chair with me. He woke up about an hour later, and I changed his diaper again, managed to get him to take some pedialite, which he promptly threw up 10 minutes later. I called his Pedi and they couldn't get us in until noon since they only had 1 doctor working that day. By the time we made our dr's appt Landon had thrown up 5 times, had diarhea 7-8 times, and only took around 8 ounces of fluid, all in 7 hours. I knew we were in trouble and there was a very strong possibility that he would be admitted. Our pedi checked him out, I told him everything that had happened, and he made the decision to admit him to the PICU. I was very worried and really trying not cry, even though our Pedi has seen me cry before when we were first going through everything with Landon. I called Scott, who was at work, and told him to meet us at the Hospital and gave him all the info. The Pedi then decided to check Landon's Blood Sugar..which is the important part, his blood sugar tells us how hydrated he is because his disorder presents and acts as Hypoglycemia. Well his blood sugar was 56, they do not want it below 75!

So we went over to the hospital, and they asked us questions. took all of his info, our info, etc. It took about an hour to an hour and a half to do all of this, and to meet with the doctor. Finally he was able to get his IV, I went with him because he would not let me put him down, or anyone else hold him. He was crying and fussing constantly at this point so I knew he was feeling just awful. To say getting his IV was awful, would be an understatement. They had to velcro him down to this board, to where only his arm that they were putting the IV in, was free and barely free at that. My job was to try and keep him distracted, and they had another really nice lady there to help me. She had all kinds of toys and stuff, but Landon was not having any of it. After getting his IV and drawing blood for labs, we went back to his room and he fell asleep on me. An hour later or so the Doctor came back and told us that his blood sugar was down to 48, which is why he was so fussy...his blood sugar was right about the level where most children can start seizing...can we say scary? So he let us know that we would be there at least until Friday...Great.

That night went pretty well. Around 10:30 p.m. they decided to move us to a room in the Pedi ward, and out of the PICU. The room was much different and not as nice, but at least we had a bathroom and a shower, and we were at the end of the hall so it was mostly quiet. We had great nurses, and a great Doctor. They had to come in every 2 hours and refill his IV fluids. He was on 60 mL of fluid every hour, mostly glucose but with lots of other stuff mixed in it. Thursday morning they came in at 4:30 a.m. to draw blood for that days labs...I had just got to sleep, ugh. He was feeling  a bit better though. He downed 2 packages of Graham Crackers, but was still refusing fluids..but we think this was because he was getting so much through his IV that his body knew it didn't need anymore. The nurses and doctors both told us that babies are very instinctual and they will not take fluids if they are already hydrated enough so they were not too worried about it. We just "hung" out in his room, took a few naps, and kept trying to get him to take more food, and maybe some fluids. He took a bottle the whole day, but it was a start. By the end of the day he was definately feeling better, and basically back to his normal self. So, Scott and I were very hopeful we could go home the next day.

Friday morning at 2:00 a.m. they woke us up to draw blood again for his labs for the day. We were able to go back to sleep, thankfully and Landon even slept in the hospital crib for a little bit. So I was able to get a little bit of time sleeping in the "sleeper" chair alone. Let me tell you this chair was impossible to sleep in. My neck and back are still sore. Oh, well. Our favorite nurse came in around 7:30 a.m. to check his IV site. His hand was very swollen and sore, so they had to take his IV out. They kept saying they were going to have to put it back in, in his other hand...this made me shudder, I did not want to put him or I through that again. So, I convinced them to let him try some time off of the IV and see how he did..since he was back to himself and feeling much better. The resident came in and told me there was no way Landon could stay off of it, he would need to drink 5-6 ounces every 2 hours...what baby does this? He also told me there was no way we were going home that day, etc. So I appealed my case to his actual Doctor and she agreed to keep him off of the IV until noon, when they would check his blood sugar again (they had been checking it every 4-6 hours for the last 2 days) at noon. If his sugar was below 80 at noon they would have to put his IV back in, I agreed. Landon ate some vanilla yogurt for breakfast, and had a few ounces out of his bottle! He then had more out of his bottle at 10:30 (normal time for a bottle), and ate some graham crackers! They checked his blood sugar at noon and it was 91!! I was so excited, they then agreed to check it again at 5:00 p.m. while leaving him off of the IV. If his sugar had not gone below 80 at 5:00 p.m. we could go home, woohoo! So Landon then ate a whole thing of applesauce, and some peaches for lunch. He also had another bottle around 3:00 p.m. (again a normal time for a bottle for him). Come 5:00 p.m. they checked his sugars, and it was still 91!! So we were cleared to go home! Scott and I were so excited. About this time nurses from all over the hospital were coming to the Pediatric ward to see the cute little red headed boy, it was so funny. They all said they were told they would know who he was as soon as they saw him..yeah that's right my son was famous all over the hospital! It was great and so Landon..he is such a ham and let them all hold him, and would walk up and down the hall way showing off for them! We finally were released around 6:15 and headed home!

We are doing well at home now. Landon and I are both excited to be sleeping in our beds again. He is back to being himself, and feels great. We are very thankful for our awesome Pedi, his staff, and the Doctor's and Nurses at the hospital. Everyone learned all about his disorder and how to treat him, and I am so thankful they were so willing to learn, and to help us and him as much as they possibly could. They were great about following his diet, and being supportive of us and what we were going through. Hopefully we will not ever have to go through this again. We have to follow up with the Pedi this week, and I am really praying they will not give us a glucose meter, but I think they will so we can check his blood sugars when he is sick and keep on top of them, so we can go to the hospital if we need to without having to make a stop at our Pedi's office first. We can call, and then he can call and get us admitted ASAP. We missed our Christmas Party at the Geneticist's office, but that is o.k. hopefully we can make it next year.

Landon in the hospital, this is when we were in the PICU. The diaper on his hand is covering his IV to try and help to deter him from pulling on it, or pulling it out all together.

Landon, very happy to be in the car on the way home from the hospital. He was so exhausted from the whole experience, as was I.

Geneticist Appointment

We saw Landon's Geneticist today, and were reminded again how much God has truly blessed us. We had a great appointment. They said that Landon looked perfect, and was doing great. We met with the nutritionist and went over (again) the food guidelines that we were given about a month ago. We talked about his issues with not getting enough Zinc, and how much he was eating...mostly the usual. Then we saw the Geneticist and I'm guessing she was a resident, but I have never met her before and she was learning from him. We went over Landon's stats...he is 9.5 Kilos or about 21 lbs, and 30 inches tall! Everyone kept telling me that I need to push the sippy cup on him more, and it's time to start weening him off of the bottle. I really wish they understood that this is easier said than done in our house. I will get back on track with it though starting tomorrow.

We talked with the Geneticist for a long while going over the things to watch for when he gets sick, his fat levels, how much Zinc he is taking, how much Levo-Carnitine he is on, how he has been doing, etc. I asked him about having more children and he repeated what we already knew that since VLCADD is an autosomal recessive DNA mutation that we have a 1:4 chance of all future children also having this disorder. He said that usually if siblings have the disorder as well that they seem to have the same pattern within the family..meaning that since Landon has a VERY mild case of the disorder, it is very likely that if we have another child with the disorder they too would have a mild case just like him. He also reminded just how blessed we really are that Landon has such a mild case, and that after a few more rounds of blood work (we will get to that in a minute), we may be able to liberalize his diet a little more...since they know more about how his enzyme levels are and how is body is "coping" with the disorder, fat intake, and levo-carnitine. He also told us, once again,  that Landon does not present any of the signs or symptoms of the disorder except that his body does not make enough of the amino acid, Levo Carnitine, needed to break down the Very Long Chain fats and move them across the appropriate cell membranes. As well as his muscle enzyme levels are a little bit elevated, but not to any level that we need to be worried about. He said that the level to which they are raised on a normal person could be because they fell on their butt and got a bruise. It is not something that we can ignore, and we need to be mindful of it and watch it, but it is nothing to worry about, and he is not surprised by them and is very happy that this is the only "symptom" of VLCADD that Landon exhibits. They checked his liver to make sure it wasn't enlarged, and of course it isn't and his heart sounds great so all in all he is one happy and healthy little boy. They were very excited that he is already walking and talking and is constant movement! We will be keeping him on his Zinc supplement until further notice, and according to the Geneticist Landon isn't the first one with VLCADD to have had a Zinc deficiency, even though it has never showed up on any of his blood work.

 Landon's specific case of VLCADD is that he has the mildest for of the disorder where he has NO heart or liver damage, no heart arithmia, or muscle issues. His form of the disorder deals mainly in the form of hypoglycemia meaning that his blood sugar can not get low (which is why until he was 6 months old we were having to wake him up every 3 hours to feed him), he can't ever fast, and he cannot get dehydrated. If any of these things occur and they are ignored for a period of time (we are talking about many, many hours to days) it can become dangerous to him and he does have the possibility of going into a coma...which we all know will never happen since we are so on top of everything. We were also told that if he seems lathargic, sleeps more than normal, isn't active like he is, vomits for more than 6 hours or refuses food for more than 6 hours then we are to take him to the ER and have him put on a glucose IV until he is better, his appetite returns, or the vomiting stops and he is able to keep foods down again.

Now about the blood work. Let me tell you I hate when we have to have his blood drawn. I don't use the word hate often, but when it comes to having to have Landon's blood drawn eevery definition of the word describes it. To get his blood drawn, they make me sit in one of the chairs with him, that has the little part that comes down in front of you. They of course put the arm thing down, and then make me grab the arm they aren't going to draw blood from, and hold him in a "bear hug" while trying to pin his feet and legs between mine so he cannot squirm. So inevitably this makes him scream bloody murder b/c he does not like to be held down, and because I am convinced that he knows exactly what they are doing. Then they put that rubber band thing around his arm, which scares him even more and makes wiggle and yell louder. Then we get to the actualy blood drawing part...he screams more when they put the needle in his arm, and inevitably because he has himself all worked up it takes forever for them to draw the blood since he is so rigid, and trying to free himself and crying and yelling...and by this time I am trying to sing to him and talk to him to try and clam him down so the blood will flow faster and we can get all of this over with...all the while trying not to cry myself. Let me reiterate I hate having to get his blood drawn. It is a tramatic experience for both of us, but I also understand it is completely necessary so they can monitor his Carnitine Levels, Liver Enzyme Levels, and Muscle Enzyme Levels so we know how well he is doing and if we can liberalize his fat intake at all. Thank God they only take his blood every so often and not every visit.

We rewarded ourselves, and Landon, with Cheesecake Factory for dinner with great friends including Landon's God-Father. Landon had a few *tiny* bites of cheesecake for being so brave today while everyone squeezed him, and checked him out, and drew his blood.

We are headed back to the Geneticist on Friday, but this time for the Metabolic Clinic's Christmas Party. I am looking forward to it, and to meeting other families that are going through something similar. Santa will be there for the kids, so I hope Landon will sit onhis lap for a picture, and we are taking a toy donation for Toys for Tots, as well as making something to share. It should be fun and I promise to take pics and post them up once we get back.