Falling behind

Things have been hectic around here. The days fly by, and my list of to do's continues to grow. It is getting somewhat easier each day, but I still have a lot to figure out.

Landon continues to have more good(non seizure) days compared to bad ones. He has only had 6 cluster seizures since we started the diet. He continues to refuse any liquids. I still have no idea what's going on. It seems odd to me that he doesn't cry for a bottle, but eats his food like a champ. Before the diet he cried any time he wanted a bottle...I know his cry for the bottle. I'm starting to worry this may not be short term. I still don't feel comfortable with any type of feeding tube. Including the one he had now.

Happy note: he is very happy; laughing and giggling non stop! It's awesome! I feel like the diet is helping, so all the tears, struggles, and time consuming effort is well worth it. Landon is having his closed tear duct opened November 24th. He will also be having a skin biopsy done at the same time. Hopefully it all goes well, and the skin comes back normal. It will take us a step closer to our muscle biopsy, and hopefully good news.

Prayers being sent to our friends and family!

Xoxo,
Heather

Day 11 and 12

So Landon has been having some issues with loose bowels, and the home nurse thought he should be tested for C-Diff.  So I called the Philadelphia team, and they thought it was a good idea.  So yesterday we took a sample down and today we got the call that it is POSITIVE!  Seriously?  It seems that anything Landon can get, he does.  So now we have this to battle.  Hopefully it gives some insight to why he isn't drinking, he has a rash all over his back, a slight fever, and the bowel issues.  When it rains it pours.  I'm assuming he contracted it during our lovely hospital stay considering it started on day 3 of our stay. Just one more thing to check off Landons illness list.

On a happy note, we have still only seen 1 seizure since last Tuesday(Oct. 12).  Pretty awesome!!! Although he is sick, and on the new diet, he seems very happy!  He did amazing with his therapies this week, and is jabbering all the time.  No new words, but I'm happy with anything he says.  His voice is like angels singing to me! There is nothing sweeter.

I know things are going to get better...we just have one more mountain to climb to get there.

Hope all is well with everyone...prayers for all our friends!

Xoxo,
Heather

Day 10

Landon continues to refuse to suck a bottle, however, he will let it dribble in and drink it.  It's so odd?  I'm hoping it ends soon.  He pulled his tube out again today.  I tried to put it in both sides of his nose.  After 2 attempts I gave up and we took him to the ER.  WHAT A FIASCO!  First they didn't have a tube to put in.  Then they got one from the pediatric floor, but it was a size smaller than what he had before.  A nurse put it in, and then pulled it out.  She wasn't sure of herself.  They called the doctor in and he did it, but they were so nervous they sent him for a x-ray. I know it's serious, but i'm assuming they have never done one!  They actually told me they haven't.  Good grief! I should have given it another try here at home...the tube is awful...my syringes don't exactly fit.  So now the cap won't go back on because I had to stretch it for my syringes.  It really never ends.  After 2 hours we finally got to leave.  They are ordering the correct supplies for "next" time.  I'm praying there isn't a next time!

The diet continues.  He seems to be doing better each day.  Other than the bottle issues.  No seizure activity today...that's a big WAHOO!  I mentioned to Brent going on vacation and never coming back.  I feel like there is only so much you can watch your baby go through.  I'm sick of the needles, tubes, eeg leads, and other things to make him cry.  I pray we wake up tomorrow, he takes his bottle, seizures end, and he starts walking.  Am I asking for too much?  Miracles happen! 

Prayers being said as always!

Xoxo,
Heather

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

Day 1

Sooo, day 1 is coming to a close. Thank goodness! The day started well, but things seemed to not go in Landons favor! First I could tell he wasn't acting 100%. he has started this weird eye flutter thing, and they are conceded way be seeing a new seizure type? They may want to catch one on an EEG. Great, more time in the hospital. Then I noticed Landon have a single spasm jerk. I tried to ignore it, but couldn't ignore the 4 following each half hour, or the 5 minute seizure to end the night. Boo!! And on top of all the seizure activity, it took 3 tries to get his IV started. He was a trooper, but it kills me to watch him cry!

We learned how to check landons sugar and ketones, and I was surprised how simple it was. Not what I imagined, in a good way! Landon hasn't been feeling well, and isn't eating great. Soo we were surprised he is on his way to ketosis...not on purpose at all. He needs to be 1.5 to be released, and he is already .5! So that's great!! Although, we DID NOT intentionally do this! Tomorrow starts the full blown diet. Ready or not, here we come!

I'll keep you all updated!

Prayers for everyone!!

Xoxo,
Heather

We have arrived

We have safely made it to our hotel room for the evening.  I can't describe how I feel right now.  I'm excited, nervous, anxious, worried, and just about everything in between.  I am confident this will be our answer, but the very small negative side of me is worried.  Worried what if it doesn't work?  What will our next move be?  I know I need to sit back and relax.  So that's what I am trying to do tonight, and over the next 3 months while we wait to see our miracle take action! 

On a very positive note....we are 4 days seizure free!!! Which is great for us!  Not sure what changed to help...but we are glad we are seeing the positive change!   Maybe there is something in the air that came up from Alabama? 

Hope all is well with everyone, prayers as always!!!  I hope to keep everyone updated on the progresss this week!

XOXO,
Heather

Waiting for Sunday

So, I think I have Landon and I packed and ready.  Of course Brent will wait until the last minute possible, and I will be having a nervous breakdown!  I am not the type of person to wait...I need everything ready days before departure.  If not, I will have sleepless nights thinking of what I am going to forget!  I think I stress a little to much, but I know your "out of luck" once you get there.  And as you all know, there are a lot of things that you need to make a little one happy! 

Landon has been having good days with progress.  He is such a happy little guy, and I am very greatful for that!  He is continuing to do more rolling over, and actually holding himself for a second or two when we put him on his hand and knees!  This make me really happy, because I can't wait for the day he is mobile! 

We hope all is well with everyone!  Sending prayers to all!  And a special CONGRATS to Dawson and his family!!! 13 days is amazing!!!


XOXO,
Heather

Packing

I feel like this whole week is consumed with packing for next week.  I always seem to get stressed about forgetting something.  A week is a long time when your 6 1/2 hours away from home.  I'm not sure how our vehicle will fit all of our "necessities,"  the bouncer, minature high chair, clothes, bottles, stroller and not to mention all the special supplies for the diet.  My head is spinning just thinking of all of it!  Wouldn't it be nice if this were the biggest problem of the week. 

Landon had a great day today at therapy!  He was actually standing on his hands and knees with very little assistance.  He continues to make me proud each day.  His seizure activity seems to be about the same, although they seem more intense lately.  He has also decided he prefers not to sleep a full night.  I really enjoy sleep, so I'm hoping this doesn't last long.  But again, if this were my worst problem! 

We hope everyone is doing well...prayers as always!

XOXO,
Heather

Fall Pictures

Ketogenic Diet...here we come!

It's official...Landon will be starting the ketogenic diet on October 11th. He will be admitted in CHOP for 5 days. We are staying optomistic that this is our "miracle." After attempting 12 meds in the last year, it seems this is our next option. We are currently weaning Sabril, and will continue Topomax, and Klonopin for now. If any of you have done the diet, you are aware of the huge task it is. I feel fortunate that Landon hasn't eaten "real" food, other than baby food. He will hopefully make the transition an easy one. Our biggest struggle will be the water and Keto Kool-aid. He hates anything other than formula, and part of me will struggle with fighting him.

Landon is doing great with development! He has been rolling over more and more each day! He actully rolled 6 times yesterday!!!! Might not sound like much, but it's a huge step in the right direction. He continues to sit well on his own, but still tripods. He also took his 1st ride in the shopping cart in Sam's. He really seemed to like it...however he is still pretty wobbly in it. I enjoyed not having a shopping cart and stroller at once!

We hope everyone is doing well, and continue prayers for all of you! Extra prayers for Dawson and his family that his surgery is a huge success!

XOXO,

Heather