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