Monday, November 30, 2009

I've been a bad bad blogger...

I've been trying to make myself blog lately but just haven't been feelin' it.  Can't quite explain it but basically I just haven't been in the mood.  It takes energy to put yourself out there and relive emotions and moments you've already been through and frankly sometimes I just don't wanna.

But here's the CliffNotes:

My parents are here (total God send!).

Noah was sick for about 5 days (yes, the "bubble" was penetrated and a "bug" got to my poor poor baby).

Noah is still having seizures.

We had a delicious and very mellow Thanksgiving.

We are on our way to CHOP on Wednesday for a follow up.

We are anxiously awaiting our nephew's arrival on the 2nd! 

Noah's IS friend Connor is going to see Dr C soon and we are so hoping he can help them.

Good luck to Trevor (and Mommy) on his upcoming 48 hour EEG.   

And that's about it.  I've been going through a whirlwind of emotions but am just not in a place where I want/feel like sharing.  I'm sure that will change soon enough and I'll get to a true update.  

Monday, November 16, 2009

Deep Breaths...

I am such an instant gratification kind of a girl.  Patience is not my virtue (what I do have is devoted to my little man and thankfully that supply is endless when it comes to him).  All I have to do is take a deep breath and look into those baby blues and I'm overwhelmed with love and a sense of purpose.  It doesn't always happen quite as quickly as I'd like (that sense of calm and refocus).  There have been times when a mini (okay, who am I kidding?  more like gigantic) tantrum had to be thrown in the closet (so happy I have a huge closet) before I could regroup. I'm not proud of my temper but I am human and sometimes it gets to be a little much.  

So this diet can take up to three months to work (if it's going to). That's a long time to anticipate, worry, wait, and hope.  It's also a long time to keep hopes high only to be disappointed and be sent back to square one.  

I'm still seeing seizures.  No instant fix here!

But I will report that these past couple of days have been atypical.  By that I mean taking care of Noah has been a breeze.  There's a little more paperwork involved but overall it's been strangely calm around here.  It's almost unnerving.  I'm, of course, waiting for the other shoe to drop 'cause it seems like it always does.   I have been a little more relaxed and found myself to actually be a little happy.  Feeds have gone down a little faster and I haven't seen as many coming right back up to taunt me and drive me insane.  Also, he cried yesterday and today.  Normally he doesn't cry at all(most wouldn't complain about this but it's VERY unnatural to have a child who doesn't cry).  Now I just have to figure out what he wants!  Passive baby no more?Opinionated baby?  Maybe...  Wouldn't that be nice?  Possibly a personality coming through the seizure haze?

Sunday, November 15, 2009

This is a long one!

Well, it was interesting to say the least.  I'm going to ramble on and on.  I apologize but I think it's important to document all of this journey.  I want to be able to have some leverage when Noah is older and doesn't want to clean his room or unload the dishwasher.  "Well your other choice is to read the blog and see what your mom went through to make sure you were okay..."  :)  I figure he'll go clean his room.  

The Queen of Keto was amazing.  She was caring, empathetic, knowledgeable, and very experienced with the whole process.  I couldn't have stayed sane without her.  She offered words of encouragement, listened to all of my concerns, made me feel better every time she came in our room, and even brought me a sandwich she made from home.   I cannot say enough good about her.  

I was extremely high maintenance and I'm sure they were ready to get rid of me.  

Throughout this process they have education classes which happen twice a day for 1 1/2 to 2 hours each.  I requested a one-on-one "sitter" for Noah since he has so many seizures and often they make him spit up and someone needs to watch him all the time.  They (the nurses) thought they would just take him to the playroom with the other kids once I left the room.  

I don't think so!  

If you know me at all you know I keep Noah very isolated from germs with arms and legs.  We don't go in public and we definitely don't go around other children.  Queen of Keto understood this and gave me private classes in her off time so I could stay with Noah and he could stay in the room.  (I told you she was amazing and I was high maintenance!)

Noah took to the formula pretty well and his spit-ups weren't nearly as bad as they are at home.  That was SO nice.  

He did have some blood acid/base balancing issues.  He was becoming more on the acidic side which concerned the docs and extended our stay for an additional night.  Thankfully we got it somewhat worked out and they let us leave.  I think they just wanted me outta there!  

There was a negotiation between me and the doctors about meds that went on for about 24 hours.  I found out what a "Yes" person I am NOT.  If they had it their way Noah would have a tube in his nose going directly to his stomach and would be getting 40 mLs of extra fluid volume a day which he CANNOT tolerate and in the end he would be spitting up ALL the time.  

Geez!  What's a girl gotta do to get someone to listen?  

The poor nurse said she felt like a middle man since she kept coming to me telling me what the docs wanted and I would refuse and send her back with a counteroffer.  It was awful and very frustrating.  Again, thanks to the Queen of Keto for listening to me and finding other meds which Noah tolerates just fine.  
Then there was the discussion I got into with a resident who admittedly said she wasn't sure what was going on since she was just covering.  Noah's acid levels weren't getting any better and she wanted to decrease his diet ratio to fix it (I had talked to the Attending Physician and already knew what the plan should be if his levels didn't get better and this wasn't it).  The ratio is important to get the full therapeutic effects of the diet.  Going lower may not yield the same results as a higher ratio.  This obviously worried me since we are so desperate for seizure control  She wouldn't listen to me or even negotiate.  So I asked to talk to someone else (ie: someone above her in the "doctor food chain").  It was late on Friday night and no one else was available.  I was on the phone to Todd crying and hollering to him about how frustrated I was getting.  Thankfully the nutrition people who make the formula messed up and didn't make the adjustment so we ended up staying on the same ratio.  Divine intervention.  The next morning the whole mess was cleared up by the keto team doctors (they did exactly what I told the other doctor they were going to do).  

Sometimes I just wish they would listen to the parents!  But I don't have cool initials after my name like MD so my opinion goes in one ear and out the other.  

Good times, Good times...NOT!

Overall, Noah hung in there, once again, like a true champ.  He complained very little and he was such an easy baby to care for (he always is).  Very mellow and laid back (although it's drug induced).  He has to get his blood sugar tested twice a day (yes, I have to prick his little toes with a needle) but he tolerates it very well.  We carefully measure all of his formula and water and patiently wait for the diet to kick in and erase the seizures from his cute little brain.  Too soon to tell if it's working but our hopes are high.  

That's it!  We're home and hopeful!  

Friday, November 6, 2009

Comments about comments

I am so grateful today.  When I read the comments you post on our blog my heart gets so filled up with gratitude.  You have no idea how good it makes me feel knowing we aren't going through this alone, that you too love Noah and want him to get better, and that you are always in our corner rooting for us. Thank you so much for hanging in there and being there for us through this journey.  

I've been thinking about how this all began.  I started looking at pictures and videos. Goodness, I cannot believe how far we've come.

Some of you have been with us since day one and some of you have recently joined us. Either way I thought maybe you'd enjoy this little clip from a year ago when they aired our story on NBC in Philadelphia...

I cannot believe how small Noah was or what a blubbering mess I was!  It seems so surreal.  

Last year November was such a great month for us.  After 3 months we finally got to take our son home and start a life together.  

Here's hoping this November brings us another great beginning. The coming of a new Seizure FREE life together.  

Since Todd and I will be arm wrestling for the computer I imagine it will stay at home with him.  I probably won't get a chance to update next week but I'll be journaling "old school" and promise to catch you all up on the latest when we get home.  

Please keep Noah in your prayers and keep fingers crossed this diet helps!  

Have a great week!

Wednesday, November 4, 2009

Monday, Monday...

Monday cannot come fast enough for us.  

C'mon KETO Diet!  It has to work, right?  It at least has to help!

The seizures are coming fast and more furious than normal and I'm about to go CRAZY! I'm not sure if I've ever posted actual numbers but when Noah was hooked up to the VEEG they saw 31 seizures in that 24 hour period.  I usually count about 15-20 (These are clusters.  I'm not counting the actual individual seizures) a day but I do sleep on occasion so I miss some.  I tried to count individual seizures one day and a single spasm cluster got up to 49 and I just couldn't keep up.  He needed me to comfort him more than I needed to count.   

We are increasing his Phenobarbital and hopefully that will get us to the diet and Noah will get some relief!  

Mama is getting desperate!