Day 8-9

Yesterday went well, but things would be much better if Landon would take a bottle or sippy cup! I'm nervous most of the time that he is going to pull his tube out again. I'm being patient, but persistent. I know he is going to do it in his time, not mine. If anyone has any ideas, or thoughts please let me know. We don't have any clue why he stopped taking the bottle, and it makes me nervous! Why? Is it because of the diet, teething, or something more serious? We don't have an answer...which makes me crazy! Yesterday also brought a cluster seizure. Only one, but still a big boo!! I know it isn't immediate, so patience I'm working on.

Today has been a good day. We are starting to get the hang of everything. I'm coming up with a good schedule, and feeling less overwhelmed. I knew it would be a lot of work going into the diet, but nothing prepares you for it. It's kinda like parenthood...you have no idea until your there! I'm extememly hopeful it will have a great reward at the end!!

Hope all is well with everyone!! Prayers as always!!

Xoxo,
Heather

Day 7

We are on our way home!!!! Wahoo!! Landon is in a good mood, and hopefully once we are home I can get him to take the bottle! I'm feeling a little overwhelmed with all the new medicines, sugar and ketone testing, and feeding. I'm worried I'll forget something. Not to mention all the therapies, doctors appointments, and things we had before this. I'm sure it will be fine, and I'll figure out a system.

Hope everyone is doing well!! Prayers as always!

Xoxo,
Heather

Day 6

Today has been a much better day! Landon woke up happy, and seemed much more himself! Finally!! I think each day the diet will get easier(or I hope). We still aren't sure about a milk allergy? We cut it out, and things seem better, so we are running with it.

We haven't seen a cluster seizure since Tuesday, but did see a single spasm this evening. I'll take it! One of his IVs stopped working today, so he got his right hand back. He was really excited, and I was happy for him until he pulled his NG tube out of his nose!! Sooo I got my practice, and I did really well. He coughed a little but didn't cry!! He is such a tough little guy! He made it much easier on me. I of course was pretty worried before it. It's much easier than I expected. Thank goodness it's over!

Hopefully we are heading home tomorrow. 7 days in the hospital is more than enough for me!

Prayers as always!!

Xoxo,
Heather

Day 5

The day is coming to an end. We are still here, boo! But our focus is getting Landon better so we can head home. Obviously, right? We have started questioning if he did have a true milk allergy? He hasn't had dairy most of his life, because of what we thought was milk intolerance. To make a long story short, we thought he was over it, but due to all the issues we are having(feeding and fussy) we are questioning it. We cut out dairy, and I feel like he already seems better. It's hard to really say what's going on because of all the diet side effects. Overall things are going well. We would have hoped for
Landon to start eating on his own so we could get rid of the NG tube, but that hasn't happened yet. Good news is we found a home health agency to take him. Bad news, I have to do a NG tube placement before we leave...not cool at all! I think I already mentioned this, but I'm kinda freaking out about it.

Eating went well, other than the drinking. He seemed pretty out of it this morning, but this evening has been good. Unfortunately he has to have yet another IV done due to one pulling out. This makes #5. No fun for Landon. Hopefully it goes quick and the first try!

They are coming in for the IV so I have to cut it short.
Prayers as always!

Xoxo,
Heather

Day 4

Day 4, ahhhh. It SHOULD be the final night in the hospital, but unfortunately not for us. Since Landon had some glucose issues last night, and the drinking issues, we will be staying longer. Lucky Landon, huh? It looks like we will be leaving possibly Saturday or Sunday? We have a lot of stuff to get figured out before we go home. He had a NG tube placed today, which I wasn't thrilled about. It was necessary, but now I have to learn to place one...uhhhh. I definitely have a accounting degree Because i don't do blood, needles, or anything else medical. Oh well, guess I'm learning! The other problem we have is finding a home health agency to take Landon on. We live in a small area and can't find anyone who will take peds. Crazy, I know!! We are working on it, and hope to get it figured out soon so we can go home!!!

Today went well with meals, and I'm praying it continues that way and maybe we don't have to go home with the tube? Wishful thinking!

Prayers as always!!

Xoxo,
Heather

Day 3

Today started pretty well. Landon ate breakfast(butter and pears) really well as usual. However, he was refusing a bottle. I think it's because he is teething, so they gave him Morton in hopes to ease the pain. Lunch came, and on e again he ate it all. (butter and sweet potatoes). He still was refusing liquids, so they started another IV to give saline to keep him from dehydration. Dinner came and went well...he ate it all. (butter and applesauce). Still continuing to refuse liquids. I tried to trick him and spoon feed water and formula and managed to get 1 1/2 ounces in him. The bad news is he threw up again some today, so he is starting 2 medicines to help. I will explain them more when I understand them more. The really bad news is they are threatening a NG tube tomorrow. I DO NOT want this, but I don't have much control. I never imagined that being in the plan!!

We are hoping to be leaving Friday, but have been warned it may not happen. The formula is special ordered and may take longer than planned, so we may have to stay until monday while it is worked out. I'm hoping we are home Friday...of course it's not like being at home! Especially when they come in at 6am, 11:30am, 5pm, 10pm, and 2am for blood work. I pray each time his IV continues to work...

A good note, no seizures today! We will stay at a 3:1 ratio for now. Landon became ketonic very quickly, so we will try the lesser ratio for now.

Prayers for everyone. And I must say I have prayed more this week than I have in months. Sometimes I think God does things to show you the important things! I also believes he creates miracles every day...I know this because I am lucky enough to live with one each day!

Day 2

So Landon is officially a KETO KID!!! He hit 1.9 today, which means he is officially in ketosis!  YEAHHHHH...

Day 2 has gone well.  His breakfast consisted of oil with a hint of applesauce.  He didn't seem to mind it at all.  He ate it pretty quickly.  About 45 minutes later it all came up.  I'm guessing the oil didn't sit well on his stomach, considering he has never had anything like it.  Lunch went better, he had butter and sweet potatoes.  We decided to add butter instead of oil(even though it is almost twice as much as the oil) and he seemed to really like it.  He kept it down, and didn't seem to get sick from it.  Dinner was also a success...he had bananas and butter.  Once again we didn't have trouble getting him to eat it. 

We had class a good part of the day.  Things seem less stressful once you learn about the menu.  Although my head is still spinning with all the great ideas they gave us on how to make it fun.  Thankfully, we don't have a tough menu until he starts eating food other than out of a jar.  I did my first stick today to test his sugar, and ketones.  It went very well...he didn't even make a peep, or kick me! 

All things considered I must say God has blessed us with a great start to the week.  We had a few bumps, but things are going amazing.  I couldn't have planned it better.

I must get back to the room...I'm saying my daily prayers for everyone!

XOXO,
Heather