Tuesday, November 23, 2010

Happy little guy

So I can't remember where I last left off? I think it was right before we went to Philadelphia last week, so that's where I will start.

Our appointments went well. They decided to take Landon to the 4:1 ratio in hopes of controlling his seizures. They also decided to take Landon off his topomax! Topomax and the diet don't seem to jive with each other, and cause a person to become acidic(which landon did). So the hope is without topomax he will start to drink. They thought he looked amazing and very interactive! He is super happy and did awesome at the appointments. We also got news that he tested negative for c diff...but were warned that sometimes that happens without it really being gone! I was shocked, but still have suspicions. He went 4 times yesterday...so unless he has some other illness I would say it's back! We will have another culture done next week if not sooner! We also discussed the NG tube. It's not going well. He has been throwing up a lot lately(which is another issue) and the tube is coming out his mouth. I'm not sure how much longer we can do the tube? 6 weeks is long enough!!! We really are pushing to see a specialist, but they want to wait a little bit. It's frustrating watching him constantly have to have it put back in!

He continues to do amazing! He has his BEST day of therapy ever yesterday!! He was standing with little assistance(and leg immobilizers), rolling well, sitting up, grabbing awesome, and even doing hands and knees well. It was a sad session though...our physical therapist is moving out west. That was our last session with her, and we will truly miss her!

So today we are preparing for surgery day tomorrow. We are heading to Pittsburgh tonight since we have to be there early! We don't have time to sit in traffic! Pray that it all goes fast and smoothly. He is such a trooper! Landon had bloodwork yesterday, and didn't even flinch...it's pretty bad when you stop feeling that pain. It breaks my heart all our babies endure! It's just not fair.

Landon continues to battle the ugly seizure monsters. He is having more than when we originally started. I'm praying hard that God answers my prayers and helps Landon beat these things! The seizures are seeming a little more intense again. So I'm not sure what's going on? He I also doing a lot of this weird eye fluttering thing? Im worried about it being a primitive reflex? Anyone else have any thoughts? I'll try to get a video. It happens when something gets close to his face...his eyes flutter rapidly. I guess only time will tell!

On a happy note, we are really excited to spend time with family and friends this week!! I love the holidays. We put our 4 Christmas tress up over the last 2 weeks, but there is still lots to do. I'm not sure if I have the energy though. I personally am really excited for this Friday!! Yes, im a crazy person who LOVES black Friday! My dad and I go every year, and have a blast!

I'm thinking of all my Friends more than ever this week! Praying for everyone to have a Very Happy and Healthy Thanksgiving!!!! Lots of love from our family to yours during the holidays!


Tuesday, November 16, 2010

5 weeks

We are once again on the road to Philadelphia. Landon has now been on the ketogenic diet ad had C diff for 5 weeks today. We took another stool sample to the lab before leaving town this morning. I'm almost positive it is going to come back positive. So the next step is sending him to an IBD specialist. (Landon just ended a 10 day treatment of vencomyocin, and before that was 10 days of flagyl). It may be taking us to yet another hospital stay for IV treatment. He also developed a rash on the back of his thighs, back of his arms, and on his back? They thought it may be an allergic reaction, but it seems that he has eczema. I really don't get why things always happen to him?? Ugh! Thankfully it's not really serious! Although it can be itchy. He doesn't seem bothered, so we are trying aquaphor first. If that doesn't work we will try a steroid cream.

He still had the NG tube, which means they will be sending us to a GI specialist after this appointment. I don't see him drinking anytime soon. I hate the tube...especially because it has come out 3 times in the last week! It's akward and makes most people nervous(including me!). Seizures are off and on like normal. Okay, maybe a little better than normal. Unfortunatley we are still seeing some. And he is doing some odd things where he shakes his legs and fists...not sure if he is doing it or we are seeing a new seizure type? Hopefully not! We are still hopeful once the c diff is cleared up we will see the miracle of the diet! We don't think the last 5 weeks even shows the benefit due to the infection! Not to mention he's on antibiotics that can cause some to people to had increased seizure activity.

On a happy note, Landon seems to still be doing well with progress. He got a stander at therapy this week, and seemed to tolerate it well! He has a special sparkle in his eyes that is so hopeful! Next week he has surgery to open his teat duct and for his skin biopsy. I will be glad to have it over with!

Hope all is well with everyone! Prayers always!


Thursday, November 11, 2010

Beautiful weather

We have been having beautiful weather all week! I'm loving it. I'm not a fan of the cold, or snow! It also is a hastle bundling Landon up, which of course he hates!

He is getting two teeth right now. One is farther back in his mouth, and it is bad! He didn't sleep at all Tuesday night. Literally I paced the floor with him from 11:30 until 6am. I finally got him settled and was able to put him down a little before 7. It felt great...until I had to get up to make formula, medicine, and hook him up to his pump at 8. So I was a very tired mommy yesterday. And the day wasn't much better. He cried all day, and I was walking and rocking all day long. I blame all of this on the teeth, but it could be the C-diff he still has. When it rains it pours!

Seizures are about back to normal. He has had about 1 a day, and they are lasting slightly longer than a typical seizure before the diet. It's hard to say if it's a failure, or if he is doing worse due to the C-diff? I'm hoping once he is over the C-diff we see improvement. He started off so well, and this is a disappointment!! A HUGE disappointment. I have no idea what we would do if it doesn't work. This is our miracle. So please say some extra prayers he recovers from the infection, and we see improvement with seizures!!

Prayers for everyone!!


Friday, November 5, 2010

Day what?

So I am posting twice today.  Since my last post was so emotional, I thought I would just create another one to update Landon's progress. 

I don't even know what day we are on anymore.  Landon was re-tested for C-Diff, and big shock, he still is postive.  Duh!  So on to his next round of treatment.  Of course it couldn't be easy.  First off it's $1,000.  Yes I said $1,000.  Thankfully we have wonderful insurance and it was covered! We didn't find out until 4pm that he needed another round of medicine, and of course Philly was gone for the day.  So I spent 2 hours on the phone getting things lined up.  Since he is on the diet, he can only have specific manufactured drugs. I finally got it figured out by 6pm. So we get the medicine, get home, open the capsules...and there is rock looking substance inside?  WHAT? How do I give a child who won't suck anything,  and who can't have the actual capsule(due to the diet) this yucky stuff inside?  I call the pharmacist, and we decide I will try to peel the capsule off and crush the insides.  It was successful, but of course couldn't be easy!  It took 10 minutes to get all the capsule off...geez.

He started his 3.25-1 ration today.  He did great with the food, but still no real success with the bottle.  Although now if you give him the bottle he will hold it!  He even puts it up to his mouth...but no sucking.  If he continues not drinking once the c-diff is cleared up, he will have to see a GI specialist.  He may also need to see a Infectious specialist if this round of medicine doesn't clear up the c-diff.  Just what Landon needs...2 more doctors. 

Seizures have seemed to have faded off since Tuesday...Yeeeaaahhhh!  We hope and pray for more seizure free days!  We also had a great day yesterday, and today.  Landon took a few steps in his walker!!! Something he has never done!  It was a very proud moment!  He surprises me daily with the new things he does.  Brent has taught him to give a high 5.  It's pretty cute...although  I think Landon is more excited to hit him.

I feel like this post is somewhat disorganized...but that's how I feel today. 

Sending prayers to all of our friends! 


One year ago today...

Was when our nightmare began.  I can't believe that it has been a year since Landon's first seizure.  The things he would endure over the year have been hard to believe.  Last night as I was rocking him to sleep, I began thinking of how crazy the last year has been. I cried...something I don't let myself do often.  For some reason watching him sleep so peacefully makes me tear up.  I feel bad as a mother that Landon has been robbed of his first year of life.  He has spent nearly a month of his short time in a hospital bed, not counting how many hours lost sitting in a doctors office.  I understand things could be much worse for him, but I just don't see how any of it is fair.  I didn't drink a pop, or eat a hot dog my whole pregnancy because they said it was bad.  I followed the rules 100%...and now Landon is paying for something.  Something I did?  No one knows.  As a mother I think it is natural to feel guilty.  Most days it doesn't cross my mind, but last night it did.  I feel like most days I completely pull my emotions from the daily activites, because if I didn't, I don't know how I would make it.  I always say, "it is what it is,"  or "everything is great." It's a cover up...I don't want to show how I really feel, because it's hurts to bad. 

I guess today is just bitter sweet.  I am very thankful for the amazing gift God gave us, and the progress he has made.  I just hope he will be able to be a normal little boy someday.  Sorry to be all emotional, it's not something I usually do.  Landon is the person really enduring all the struggles and pain, and he is the reason I feel sadness.  He is truly a blessing, and a very happy little guy! 

Tuesday, November 2, 2010

On the road again...

We are on our 6+ drive to Philadelphia right now. Thank goodness Landon is so good on the drive. It is exhausting considering we are only in Philadelphia about 16 hours...then back in the car for 6+ hour drive home!

Landon has officially been on the diet 3 weeks today! I know it is way to early to know if we have success, but things aren't going as well as they were. He started off awesome! Over the weekend we noticed his normal pattern occurring again. I'm praying that our good spurt wasn't the typical "honeymoon" we see when they change his medicines.

The other frustrating issue is the c diff. He ended his 10 day med yesterday, and I don't think it's gone! He had a massive blowout today, and I haven't seen something like that since we were in the hospital(when he contracted it!). It's just another unnecessary issue for us to deal with. Part of me if upset/mad at someone(I'm not exactly sure who) for not using proper hand hygiene! I have a bad feeling this could be another long battle.

Landon also continues his strike from drinking! I thought a button or g tube was in our future, but the keto team said they wouldn't do that. They feelmthe issue shouldn't last long. They are possibly going to send us to a specialist to see why he isn't drinking. Great, another doctors appointment! Oh well, better safe than sorry I guess!

We are working on staying optomistic and looking forward to seizure/c diff free days!

Prayers for all our friends!