Tuesday, December 28, 2010

Bitter sweet times

So it never fails...I always get sad after Christmas! Between all the excitement of spending time with everyone, and then it's over. Back to reality, boo! And we aren't having the best days with seizures around here. Things seem to be getting out of control. We are seeing a big increase, and aren't sure why? Landon has been on zonogram for almost a week. He goes up on the dose tomorrow. I'm not sure if it had anything to do with all the seizures or not? I'm finding it harder to decide these days. We go back to Philly next week, so I'm trying to wait to see what they say. I believe Landon will be done with the diet, and I'm praying his GI goes back to normal. He still isn't drinking, and isn't eating well. It's pretty much a battle each meal! No fun at all. Especially when his food is his medicine. On a good note, he isn't throwing up daily!!! That's exciting, so I would say the prevacid was a somewhat success. Also, Landon has been soooo happy, chatty, and all smiles! This always makes me happy! He continues to make slow progress. As all of you, I wish I could wake up and things be fixed! Too bad it isn't that easy!

Landon had a great Christmas! Actually we all did! I hope you all did as well! Prayers as always!

Xoxo,
Heather

Thursday, December 23, 2010

Merry Christmas!!

I wanted to make sure I wished everyone a very merry Christmas!! We are really excited, and hope Landon enjoys it! We received a early Christmas present...a negative for c diff! It's definitely good news, and hopefully takes Landon in the right direction. We go back to Philly the beginning of January. We will discuss coming off the diet, and starting felbamate. He started zonogram on Tuesday, just to hopefully send some help until we get to philly. Our dr wanted to wait for felbamate until we are off the diet, being as they both compromise the liver. Maybe god will grant my wish and let Landon be seizure free with zonogram! Landons seizures have been getting out of control...so we hope to see improvement!

Thinking an praying as always!!! MERRY MERRY CHRISTMAS to all!!!!

Xoxo,
Heather

Sunday, December 19, 2010

16 months old today

Today is Landons 16 month birthday! I try to recognize each month for him. Sometimes we watch the video from his birthday, or look at pictures. It's happy and sad all at once. Other than celebrating today, I'm continuing to prepare for Christmas! I'm really excited to see how landon reacts! I think he will enjoy it(I hope)!

We have another busy week of therapy, doctors appointments, and phone calls needed to be made! Landon has been on his prevacid for 12 days tomorrow...and still no bottle. He will drink a little liquid(4 ml) if I sprinkle it in his mouth. Def a tiny improvement, but not where we need to be! It looks like the diet may soon be a thing of the past. We also have to have him tested for c diff this week.
Hopefully it's negative!

We still continue to see almost daily seizures, and the odd movements continue. Please pray our next move is the answer! We have been told felbamate is our next step.Anyone have any experience with it? I'm nervous about the extreme side effects. But we need to try it with hopes of it helping his seizures!

I'm asking Santa for three things this year...negative c diff, and Landon drinking again, and seizure freedom...I don't think it's unreasonable?

I'm Thinking and praying for all of your Christmas wishes to come true! We love you all, and wish you a Very Merry Christmas!

Xoxo,
Heather

Friday, December 10, 2010

C diff...again!

So Landon tested positive once again for c-diff. Fun fun...that means washing a million blankets, and articles of clothing of day. Wearing gloves and watching your every move changing his diaper. I know it could be worse, but it just add to the stress. So more medicine it is.

On a good note we had a great appointment with the GI specialist. He thinks Landon has acid reflux which is magnified due to the fat. He said Landon seems to have a high pain tolerance and his way of showing he doesn't feel good is refusing the liquids, and now fighting his food. He put him on Prevacid with hopes that we see results in about 10 days. If not, we will discuss discontinuing the diet with hopes the drinking begins after we stop the diet. We really liked the doctor and felt comfortable with him! That's always a great thing!

Things have been good other than all of the GI things. We baked cookies today...actually I baked, Landon watched tv. We had fun either way!

Hope all is well with everyone! Prayers as always!

Xoxo,
Heather

Wednesday, December 8, 2010

4 AM

So Landon has decided tonight that sleep is over rated, and he doesn't want any! Ugh, I hate losing sleep! And none tomorrow since we see the GI specialist in Pittsburgh. I'm really anxious to see what he thinks is going on. I'm always nervous to get a new doctor and be disappointed. I'm sure you know what I mean...the doctor who acts as though you have no idea, won't let you get a question in, and makes you feel crazy. I feel awful after appointments like that, and right now I would most likely have a nervous breakdown if that were the case. I have so many thoughts, and am worried to hear anything negative!

Things have been extremely stressful since we started the diet over 8 weeks ago. I think it would be stressful by itself...but add the feeding tube, daily vomiting, numerous bm explosions a day, and extra phone calls and appointments. I don't want to give up on the diet, but it seems hopeless at this point. Especially since we are forcing it so much. How long did everyone else wait before they saw any result? I feel like at this point we would have seen a slight improvement. I'm trying to upload a video of some new odd movements...I'm worried it's a new seizure.

Hopefully I have time and energy to update later on what the GI doctor says! Praying as always!

Xoxo,
Heather

Monday, December 6, 2010

My Santa wish

So it's been long overdue for me to update you all. I have been in a rug, and I THINK I'm finally coming out of it. I have been forcing myself to be in the holiday spirit. I haven't felt like shopping, decorating, wrapping, and I can't seem to get that warm excited feeling. I guess that takes me to why I'm so down these days.

Landon still hasn't had any improvement on the diet. And he of course isn't tolerating it at all. Now he is throwing up daily. He still hadn't drank anything in 8 weeks, so he continues to have the NG tube. He is going to the bathroom A LOT, even though he tested negative for C Diff. He also had a weird rash off and on, which I was told was eczema. Oh yeah, and he has been really fussy off and on. Not sleeping well some nights. His seziures are actually kinda getting worse. We are seeing a few more than usual, and they are pretty intense. He is also doing a very odd excited thing. Brent thinks it's normal, but I however have a bad feeling about it. It's when he is awake, which is different from his normal seizure pattern, and he is normally playing. His arms and legs stiffen and shiver, hands clinched, and his eyes stare at his right hand. It's on a few seconds and it's back to playing, and then 5-10 seconds later it happens again. Our neurologist said he though it was normal last appointment, but it's really odd? Anyone else see seizures kinda like what I'm describing?

We are taking Landon to Pittsburgh Wednesday to see a GI specialist. Our neurologist also forewarned me that the bar to stay on the diet is pretty high at 3 months. He said you need to see decreased seizures and toleration of the diet, which Landon has neither. So he said we may come off the diet sooner than planned. I'm just hoping I get my happy, healthy eater back when we come off!

I know our family has so much to be thankful for, but this dreary weather doesn't help at all with my sad days. I am very thankful tha Landon is continuing to make slow progress! I had a dream last night that he pulled himself up next to the Christmas tree! Even though it was a dream it was amazing...what are the odds Santa can help me with that? We had an amazing thanksgiving(being with family makes me feel better) so we are looking forward to Christmas! Hope everyone is doing well! Saying our prayers for everyone as always!

Xoxo,
Heather

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!

Xoxo,
Heather

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!

Xoxo,
Heather

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!!

Xoxo,
Heather

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! 

Xoxo,
Heather

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!

Xoxo,
Heather

Wednesday, October 27, 2010

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

Friday, October 22, 2010

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

Wednesday, October 20, 2010

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

Tuesday, October 19, 2010

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

Sunday, October 17, 2010

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

Saturday, October 16, 2010

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

Friday, October 15, 2010

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

Thursday, October 14, 2010

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

Wednesday, October 13, 2010

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!

Tuesday, October 12, 2010

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

Monday, October 11, 2010

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

Sunday, October 10, 2010

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

Thursday, October 7, 2010

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

Monday, October 4, 2010

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

Sunday, October 3, 2010

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


Thursday, September 9, 2010

Sabril...

So Landon has been on Sabril for a few weeks now. Things seemed somewhat better at first, but as usual things are taking a turn back to the old. His seizures are getting long, and more intense. We are giving it a few more weeks to see how things go on it. We return to Philadelphia for the Ketogenic class, an EEG, and meeting with the doctor again. I have been pretty upset that we haven't had a break, and we are pushing a year since he started having seizures. I have been doing more research which can make things worse sometimes. I feel like i'm becoming somewhat paranoid, and much more emotional. The smallest things are making me cry...and I consider myself to have a pretty hard shell. I know I need to stay strong for him, but I fear the worst. Hopefully things start looking up for our family.

Hope all is well with everyone!

XOXO,
Heather

Thursday, August 26, 2010

Catch up...

I'm not sure where to start...it's been way too long since I last blogged. I guess I'll start by saying Landon came down with an Upper Respiratory Infection a few weeks ago...it actually started almost the SAME time as Banzal was started. He ended up being admitted to our local hospital, because he stopped eating for 3 days and became dehydrated. He was only there for 2 days, hydrated, and sent home healthy. We stopped Banzal the next week, which thrilled me, because it made Landon so fussy, and not himself. It didn't help with seizures, so I'm glad to be done with it! Since then we have started Sabril(Vigabatrin). The first few days on it were rough...he had anywhere from 5 to 2 cluster seizures a day, along with numerous single jerks. The last few days have been good, but it seems we always see the "honeymoon period." I'm still not sure if I like Sabril due to the side effects, but we are trying it. We go back to Philadelphia next week as well as Pittsburgh gentics. We have to see an eye specialist in Pittsburgh soon also for Landon's closed tear duct...poor little guy never wins. It seems surgery to open the duct is in the future, as well as a possible muscle biopsy. We also have a day class in Philadelphia to start the Ketogenic diet...has anyone had luck on it? I'm excited to start it, and hoping we see improvement!!!

On a happy note...LANDON TURNED ONE!!!!!!!!!!!!!!!! We had an over the top 1st birthday bash with 85 of our closest family and friends at our local park!!! Landon did amazing all day!!! And after it was over he came home with about 60 outfits, a battery operated 4-wheeler, bike trailer, tiny piano, luggage, 2 sit to stand toys, books, gift cards, money...and that isn't half of it!!! You could feel the love for him that day...it was pretty amazing, and overwhelming. I couldn't have asked for anything better for him to celebrate a crazy, unforgettable first year! He seemed to really enjoy all the attention, and couldn't stop laughing all day!

Turning one seemed to really be his turning point! It was like he woke up and decided it was time to get serious! He is so incredibly strong, although his tone is still pretty weak. BUT he is standing with assistance! That is a huge accomplishment! He is doing so well, I can't believe how well he continues to do everyday!

I hope to post pictures from his birthday on here soon...if I can figure it out!

Hope everyone is doing well as always!!

XOXO,
Heather

Wednesday, August 4, 2010

Banzal?

So it's been a week since Landon started Banzal. Since then, he went 3 days with almost no sleep, and Sunday started with a fever(which he currently still has on and off). He has been the the pediatrician and they said he looks great. Maybe a slight upper respiratory infection. I'm just starting to put together pieces, that maybe it is the banzal? Online it said to contact your doctor if you have a fever, or sleeplessness, along with other things. I have called twice and continue to wait for the neurologist to call! Frustrating! Hopefully he will be better soon! This is the first time for him to be "sick sick" as I call it. The one good thing is he continues to be pretty much happy! Boy are we lucky...or I should say I, since I stay home with him. Anyone else have any side effects from it?

On the seizure side, he continues to have them daily or every few days. They have been much more severe since we stopped depakote, lowered topomax, and started the banzal. Maybe it's too early to tell?

Hope all is well!!!

Wednesday, July 28, 2010

Where do I begin...

So it has been almost a month since my last post. We returned today from yet another trip to Philadelphia. He continues to have seizures, not always daily, but every other day. Up to now nothing has really helped or stopped his seizures, and we still haven't found a reason to his seizures. Landon's doctor has decided to take him of Depakote, Levocarnitine, and taper his topomax. He will start on Rufinmide(Banzel) and we have started the process of getting Vigabatrin(Sabril). We also have plans of trying the ketogenic diet in the future, if the medicines don't work. As the doctor said, Landon is a hard egg to crack.

I can't believe our little baby is going to be a year in 3 short weeks...where did the time go? I also never imagined what the last 10 months have been like...numerous doctors appointments, too many medications, and trips to Philadephia. Everytime someone looks at him they say WOW he's a big boy, how old? When I respont 11 months, they normally say something about, Oh so your chasing him everywhere, or have fun keeping up...If they only knew that is my dream! Then I feel like I have to explain why he doesn't even sit up or roll over. I'm kinda sick of always explaining. We are blessed to have a wonderful little guy, but I'm ready to be done with this chapter, the seizures that is.

On a postitve note, Landon is doing well in therapy. We continue to go 2 or 3 times a week. He is almost sitting up on his own! I was so proud today, he sat himself up from leaning back on a pillow!!!! To us it is such a huge acheivement! My hopes are he will sit on his own for his 1st birthday, and we are working hard to get there!

Hope all is well with everyone!!!

Thursday, July 1, 2010

Partial/Infantile Spasm Seizures

Sorry all....it has been waayyyyyy to long! I am updating from our hospital room in Philly. Landon had a repeat MRI, and prolonged EEG done. Thank goodness the MRI was normal. The only abnormality was some subderal hematoas from the prednisone (we won't be using any more steroids after that) and they are healing on their own. The EEG caught some good seizures, and now we know they start out partial and turn to infantile spasms. Thank goodness we are still here because Landon just had his LONGEST seizure...a little over 11 minutes. It seemed forever. We should be leaving tomorrow, as long as everything is going okay. Now Landon is starting depakote and weening Keppra. So hopefully this will be the answer. Still no ideas on a cause.

I'm sure i'm forgetting to update on something, but this is a quick update for now.

Hope all is well with everyone!!
XOXO,
Heather

Thursday, June 3, 2010

New news...

We are back from Philly for the 3rd time. We got good news that his EEG has improved! Although he is still having problems on the right side of his brain. Which is where his seizures initially started back in November. He continues to have anywhere from 0-6 seizures a day, lasting around 2 minutes each. The doctor said at this point he wants to repeat another MRI at the end of this month/early July. He also wants a 24 hour EEG to capture some seizures, along with meetings with himself, and the gentics doctors. He was still optomistic, and thinks Landon looks great. Landon continues to make slow progress with his development. He has rolled over twice in the last few weeks! Something so simple to most, means the world to us!

Hope all is well with everyone! Thoughts and prayers for you all!

Xoxo,
Heather

Tuesday, May 25, 2010

Steroids...

So tomorrow will be a week since Landon has started steroids. Things don't really seem any different? We are staying optomistic things will start falling in place. Soon we will be back in Philly...

Therapy is going great! The therapist are amazing, and we have already started to see improvement! So exciting for us!

Landon had his 9 month well checkup today which was great! He is 90% for height and 75% for weight...he is starting to thin out! The doctor thought he looked great, but delayed in fine/gross motor skills as well as very low muscle tone. He also said he thought Landon's low muscle tone could possibly be from the actual cause of the seizures. I haven't been able to get those words out of my head. The thought of not knowing why he is having seizures scares me to death! (or knowing the cause scares me to death) Needless to say I haven't had the best or most optomistic day today. I try to always say it could be worse, but I'm allowed to have a day when I'm fed up...right? Tomorrow is a new day, and I plan on making the best of it!

Hope all is well with everyone! Still saying prayers for all!

XOXO,
Heather

Sunday, May 23, 2010

2nd Philly Trip

So we have returned from Philadelphia again. We had a routine EEG done before the appointment. At the appointment our doctor informed us, Landon now has developed pre-hypsarrhythmia. Meaning he has hypsarrhythmia, but it isn't full blown yet. His EEG has worsened, but the good thing was he seems to be fighting full blown hypsarrhythmia. Landon has now been started on intense steroids for the next two weeks to hopefully help him become seizure free? We will again return to Philly to see how his EEG looks at that point. He had a few good days after we started the steroids, but today he has had two seizures. The doctor said Landon isn't the typical Infantile Spasm child...he is very active, which isn't the norm. The doc seemed extremely optomistic, and of course couldn't give us much information on what to expect. Each child will write their own story. All 3 of us had blood drawn to become part of a study to see if they can finally find some answers to why children have infantile spasms. Wouldn't that be nice?

We did have some fun on our way to Philly. We stopped at the Hershey factory and Bass Pro Shop! It was fun, but a very long 2 days, considering we were in the car 6 hours each way! It's a long trip, but we are finally getting some answers! Landon is such a trooper when we go, he just watching dvd's.

Thinking and praying for everyone! Hope all is well!

XOXO,
Heather

Tuesday, May 11, 2010

8 days

Well at least we made it 8 days seizure free. I had such a good feeling about it, and I am somewhat shocked to be back to daily seizures. I shouldn't be...but I am. We had a GREAT week, and for that I am thankful. Hopefully new meds will be the answer. We return to Philly next week and will choose a new med. I am uncertain which path to take with his meds. The doctor mentioned depakote, or prednisone. Does anyone have any suggestions about either med? On a good note we are starting OT today, or at least the evalutation is today! I'm so glad we will finally have therapist watching and helping him now.

Hope all is well with everyone, still praying for you all!

Xoxo,
Heather

Friday, May 7, 2010

Leaps and bounds...

What a change I can see in our little guy. He is babbling non-stop these days. It is music to my ears. On top of all the "talking" it seems he may be trying to finally roll. It's amazing to see the things he can do when he doesn't have seizures! I am SOOO HAPPY TO SAY...We are 1 WEEK SEIZURE FREE today!!!! Wahoo! That is such a great things to say, because it is the longest seizure free period we have had in 6 1/2 months. I am starting to see how people with healthy children have it...(minus the medicine twice a day) I am so greatful to see him making all this progress. I was really starting to get worried about all his delays, but I think we will move forward quickly as long as the seizures are controlled. Next week we are starting all the therapies.

God has really blessed us in many ways, most of all with our precious Landon! Hope all is well with everyone! I am still praying for everyone!

Xoxo,
Heather

Wednesday, May 5, 2010

Philly...

It's been a few weeks since we have gone to Philly, so sorry for the late update! First off, the city was beautiful! We went a day early to enjoy the 6 hour drive...lol. There was so much to see, and Landon was a complete angel all day!

I must say even the EEG was much better than in the past! The lady was sooo comforting to Landon. If he fussed she would stop and sing to him! I was amazed at how caring she was! After the EEG we were sent to a waiting room waiting for the appointment with the doctor. I was AMAZED when the doctor himself came to the waiting room, introduced himself and took us to the room!!!! I have never seen any doctor do this...EVER! He didn't rush us, and was more than happy to answer any questions! Unlike the past, you could tell he definitely did his research on Landon's case! It was so nice to only verify the history for him! As for his diagnosis...He feels Landon has 2 types of seizures...the partial seizures, and his myoclonic seizures. Although he does have a irregular EEG without seizures...it is not hypsarrhyethmia. He also gave us hope tht Landon could possibly still outgrow these!!!! We were sooo happy to hear this! It's nice to have some hope to hold onto! He took Landon off 3 of the 6 meds he was on, and tried to ween him off a 4th. However, Landon started getting much worse so he bumped it back up for now. He said we will try again once things seem to improve. I was relieved to hear "delete" some of the current meds! It was a 2 hour process to sort, and prepare his meds each day! I had spreadsheets, calendars, and dry erase boards around the house to make sure I knew the correct days to refill, and each increase/decrease. It was overwhelming to say the least. We will be back in Philly in 2 weeks for another EEG, and visit with the doctor.

I also asked about his seizures possibly caused by immunizations. He said no, but hesitated. He then said there isn't really a way to prove it. I am not convinced, but understand there isn't a way to prove it. So, Landon won't have immunizations unless we find a cause.

Landon had a bad 2 weeks after we left Philly. I did some research, and thought it could possibly be from Trileptal withdrawal? He was on it for 6 months, and we just pulled it "cold turkey." It needed done because it wasn't helping, and with myoclonic seizures it can make them worse sometimes! But I am SOOOO happy to say today will be day 5, seizure FREE!!! That is the longest span, and I'm hoping it is for good!

Landon has learned to babble, all the time. (which I LOVE) He says DaDa, BaBa, and BlahBlah! (The doctor said that was his main concern was for Landon to babble.) He still hasn't rolled, crawled, grabbed anything or really sat for a long period by himself. We are still waiting for the OT, PT, and Speech to start! This process is also frustrating! We keep losing months at a time! If we had the therapies I can imagine how great he would be doing! I am thankful that he has been progressing in the last few days. We are catching back up from the bad 2 weeks, but we will get him where he needs to be!

Hope all is well with all of you!!!

Xoxo,
Heather

Monday, April 12, 2010

Update...

Sooo I have decided that I'm not very good at keeping everyone updated on Landon's progress. I really am trying...:)

Landon had ANOTHER medication increase, but things have been going VERY well since!!! I hate to say it out loud, but we are 2 days seizure free!!! Can things really be going our way?? We are a week away from leaving for Philadelphia...and don't know how long our stay will be. Which means alot of packing. We are excited, and super optomistic to hear what our new doctor thinks about Landon.

Landon has been making lots of progress...I don't see any regression! He is close to sitting alone, rolling to his back from his side, talking away, and laughing up a storm! When he is awake it's hard to have a converstaion around him...not that I'm complaining! He wants everyone to know he is present. When we were in Church yesterday he sang when we sang, and even helped father give the sermon. It was too cute!

I have been staying busy reading a new book about the adverse affects of Pertussis and Rubella Vaccines. Going to libraries to do research, and find anything that will help! I will let you all know if I find anything interesting.

Today, we are seeing the Early Intervention Crew again, to review Landon's evaluation. Hopefully we have therapists coming soon! It is long overdue, and I'm ready for them to start working with him.

Other exciting news is we are having a family come over tomorrow with a daughter who just had brain surgery. I don't now much about the little girl, but I know she had infantile spasms, and they are coming to tell us their story. We are really excited to meet them. Hopefully we will hear something that could help Landon or one of our other friends. If nothing else we will have one more family to add to ours!

We hope all is well with everyone! Keeping everyone in our prayers!

XOXO,
Heather

Monday, April 5, 2010

Late but never...

It's been awhile since our last post, but we have been busy! Landon had a great 1st Easter! The bunny was extra generous with him! Landon seemed to really enjoy seeing his Aunt and Uncles from out of town...who of course spoiled him with gifts as well! It's always nice to have some time to relax with family and friends. It was exactly what I needed!

Landon had his evaluation with early intervention today. Soon we will have OT and PT coming to our house! Hopefully they can get him where he needs to be!

We also have exciting news...We FINALLY have our appointment for Philadelphia!!!! Such a relief!!!! After all the confusion and phone calls it's scheduled! Say a prayer for a safe trip and answers!

Thinking and praying for all of you!
XOXO,
Heather

Monday, March 22, 2010

This Friday

This Friday...March 26th...Is Purple Day! Will you join us by wearing purple...In honor of Landon...and all his seizure friends?!

Click here to learn more about Purple Day and the extraordinary little girl who launched the event.

And the disappointment begins...

I know I shouldn't be shocked that Landon had a big seizure today, but I was secretly getting overjoyed with his good days! It is a constant rollercoaster...and I'm ready to get off! I try to stay optomistic, but moments like this make me scream.

On a positive note the weather is beautiful today and Landon has been extremely happy and playful! I thank god every day for blessing our family with this wonderful little boy, but I also pray we can get these seizures under control. So for now I will continue to enjoy him, pray, and make the never ending phone calls until he is better!

Hope all is well with your family! Prayers continue for all of you!!!

Saturday, March 20, 2010

Better days...

I hate to say it out loud, but the last 2 days have been excellent. Maybe the extra prayers from all of our new friends are helping! I try to be happy for the good days, but don't want to be disappointed if/when the seizure begin again. I hope the seizures are gone for good...duh, right? (We all pray for this numerous times a day!)

We still are waiting on Philadelphia. We have decided to stop Landon's immunizations until we find a cause for his seizures. After much discussion, and a conversation with a new family friend, we just can't be sure that they aren't the cause of his seizures. It is extremely scary all the things you hear about them. I was someone who almost didn't believe they could harm someone...so for me to believe it could be a factor is somewhat crazy. But at this point nothing is ruled out, and the more I read, the more I wonder.

Thanks for checking in and all the prayers! We will continue to keep all our new friends and families in our prayers as well!

Thursday, March 18, 2010

The waiting game...

I haven't posted anything in a few days because everything is the same. Landon is still having seizures and we are still waiting to get the call from Philadelphia. I did call yesterday to make sure all our paperwork, and scans were sent. (if I don't worry about it, noone else will!) On the up side, we are still being blessed with absolutely beautiful weather! Landon and I have been taking lots of walks enjoying the sun! Also, Landon has been eating pretty well! This makes me happy, because I worry when he doesn't want to eat. So I guess you can say we are just playing the waiting game for now.

Friday, March 12, 2010

Landon's Seizures

video

This video is of Landon having a seizure in December 2009. They don't look exactly like this now, but this is the second type he had. They have changed quite a few times over the last 4 months.

Thursday, March 11, 2010

Sunny and 67

Today started off as another beautiful sunny day. Landon had his first seizure in a little over a day :( He continued to have two more large seizures today. I can't honestly say I am surprised. It seems that he has a good day followed by a few weeks of bad days. In my heart I think we still have a uphill battle to fight, but I am still staying optomistic we will find a good mixture of medicines to control his seizures. We are paitently waiting for the call to make the trip to Philadelphia!(We hope soon!) We just keep our heads up, and continue to take one day at a time! We are fortunate enough to have an AMAZING family, friends, and newly found friends to surround ourselves with. Thank you all!

Tuesday, March 9, 2010

Beautiful Day...

Today we finally had a beautiful day outside! Unfortunately, Landon slept most of the day...which is pretty normal since his med change. He finally seems to be eating okay now. He had 3 full bottles, and a half a jar of baby food. This is a big change from what he was eating! (6 or 7 bottles with about 3 jars of food a day...he's a big boy!) Hopefully once he gets adjusted to his medicine he will start being more alert, and eating better. With all the sleeping it's no wonder he seems to be behind on some milestones. We will continue to work with him and get him where he needs to be!

Monday, March 8, 2010

One day at a time...

My husband and I were blessed with a beautiful baby boy in August 2009. Soon after he was born I saw him make weird movements when I changed his diaper. Everyone around me thought it was probably normal infant jerks. Being a first time mom, I thought maybe I was being paranoid, but I still called the pediatrician. After being admitted to the hospital, our fears were confirmed...Landon was having seizures. He was started on Trileptal and after a few days sent home. Things didn't seem to progress so we had to return to the hospital and he was put on phenobarbital. After a few weeks of no progess he was taken off the phenobarb and Keppra was added. We continued to see our neurologist each month for the next few months. In December 2009 his seizures changed. He began violent jerks. His body would bend at the center, his arms would fly outward, his legs would pull to his chest, and he would stare. This was a big change from his shaking legs in the beginning. The doctors began adding new medicines including: Keppra, B6, Coenzymated B6, and Lucovorin. I took videos to our appointments, but they never seemed concerned. That is until I showed my pediatrician the video at Landon's 6 month checkup. He was extremely concerned, and had us admitted to the hospital again. He believed Landon could be having Infantile Spasms. After our 4th EEG,he was diagnosed with having Myoclonic Seizures. They have now added Topomax, and Klonopin to his list off many daily medications. They are looking for a cause, but have not been successful yet. Our neurologists are concerned with his development and feel he may be regressing. We are optomistic we will get his seizures under control and continue to progress with his milestones, but sometimes it takes alot to not lose it. We will soon be heading on a 6 hour trip to Philadelphia in hopes that the doctors at Children's will be able to help him. We hope to find other people who can relate, and help us or that we may be able to possibly help your difficult journey. I will add more information about Landon including pictures and videos of his seizures, but this is a quick overview of our little angel.