Monster Molar Attacks!

Remember that monster molar?

It's a doozy, that monster molar.

When I first discovered the infamous molar, after days (and nights) of inconsolable crying and drool-soaked shirts, I could feel the sharp budding of a new tooth through soft, fleshy, swollen skin.

We found it! We found the source of all those sleepless nights! Now what?

Well, there was Tylenol and gum massages and baby Orajel.

But here we are a few days later and, although things were not quite as bad as last week, Christian was still not a happy guy. He was still, sadly, in pain.

As I tried to rub some Orajel on the swollen little lump in the back of his mouth, it felt different - round and bubble-like. Not good.

I tried my best to pry his mouth open - he's not partial to anybody messing with his mouth and you could have fooled me the way he hangs it open all the time - but I finally got a glimpse. It not only felt like a bubble, it was a bubble. (Gasp! - What the hell is that?!?!)

I immediately thought it was some sort of abscess. Of course it would be. No new tooth has shown its face in that mouth for quite a while so of course the first one to try in a long time would have trouble.

I called the doctor and the doctor said, "No more monkeys jumping on the bed!"

Just kidding. But as I started that sentence I thought about that story so I thought I'd share my mind's ramblings.

Anyway, we went to Christian's pediatrician who took a look and said that it was not an abscess but was going  in his books as the biggest eruption blister he'd ever seen. The biggest! And the cure? His sharp little molar has to push through and break the blister. Geez! As if Christian doesn't have enough to deal with.

Oh, that's not the end of the good news. I asked the doctor to take a look at his ears, because ears are very often the silent culprit of infection and just to be on the safe side. Sure enough, his left ear has a little infection on the very same side as his monster molar. Poor kid. All that pressure and pain on the same side! He just can't get a break!

Some more Tylenol and an antibiotic later, Christian finally drifted off to dreamland where I'm certain it's easier and less painful.

You know, secretly (or not so secretly) I'm glad it's only an ear infection/monster molar lava eruption. This is peanuts compared to more serious things that would be harder on Christian and even life threatening. We had our prescription filled by the fine people at Target Pharmacy, we've got plenty of Tylenol and Orajel, so we're set to kick this minor blip in our current journey to rock stardom.

As soon as we are over this, we'll get back to working on some more of this...

(Don't look if you're scared of drool! And I took these pictures while helping Christian sit on his own. No easy task and not great pictures in full frame. Enjoy the droolyness!)

 

That's called tripod sitting, Peeps. It's a first around here for us! And for a few seconds we've even tried it out without Mommy helping!

Go away Monster Molar/Ear Infection! We've got work to do!

The Verdict

I'm quite sure these last few days were delivered from hell.

Christian was doing so well! We were moving along, even working on some things that were never even attempted before that are now a possibility! And then Wednesday hit. Oh, Wednesday.

I last reported that Christian was crying every time he wasn't held. This turned into an all night thing. And then by Thursday, it was all day and all night to the point of being inconsolable

There was no fever, no throwing up, no warm foreheads, no snotty noses. Just crying and moaning and tears and carrying on...for hours...non stop. (At times like this I often wonder if scientists have ever done studies on the sanity of mothers and fathers who listen to nonstop crying for days and nights on end.)

We weren't sleeping. We were up at three and four in the morning. I was delirious. I didn't feel like I could leave the house. It was hell.

Yes, I love that Christian is responsive enough to cry. But this was different. This wasn't just an "I'm tired/I need to be snuggled" cry. This was a "something is wrong" cry.

Being the mother to a nonverbal child is little like being a detective. We have to look for a sign, any sign to figure out what the heck is going on. Seizure-wise he was doing okay, surprisingly. But he did have a few more than usual yesterday.

As a Keto-Mom (I was referred to as a Keto-Mom by another Keto-Mom and I like it so I'm adopting it), I am looking for signs in the diet to show me what went wrong. Because when you obtain any type of seizure control it is so fragile. A single gram of this or that, too many calories, too little calories, not enough medication, too much medication, you get the idea, can disrupt months of hard work.

Christian took his last dose of Sabril (his seizure med) on Tuesday. He's decreased by 2mLs every week until he was to be done. Just 2mL's! Not 10, not 5, just 2! So Tuesday is when this crying started so I immediately thought it was the 2mLs of Sabril. Really? IT'S JUST 2MLS!!!!

So I gave it back to him for a day. It seemed to sedate him enough to get some sleep. I also gave him some Keto-friendly Tylenol (half a tab of plain ol' adult Tylenol crushed w/ water) to help with any pain he might have.

We finally got some regular sleep Thursday night. And I don't think I communicated our issues correctly. It wasn't so much about the sleep as it was the sleepless nights, sleepless days, and crying through all of it that was the issue.

Yesterday, he was finally okay enough to venture out of this house. We went to a play date at the park and whoever thought play dates were for the kids just isn't in the know. Because I'm pretty sure play dates are for the sanity of the parents involved.

We had a great night sleeping last night, pretty much back to normal. He's not crying and carrying on anymore, other than some whining before bed last night.

So what's the verdict?

I was sure it was those pesky 2mL's of Sabril. I was certain of it! I mean I don't want him to be med free just to say Oh, us? Yeah, we're med free! If he needed meds, he needed meds. No big deal. Will it make him comfortable? Okay, sign us up!

But that wasn't it. And sometimes the answers are literally under our noses and very, very simple.

See, Christian has a gigantic mountain of a molar rising up under his swollen little gums. So normal. So simple.

I thought is maybe was a molar early on, but couldn't tell because Christian's gums are always swollen due to his mouth being open and not chewing food and all that. So it was hard to tell.

I guess after falling asleep with him on my lap almost every night this week and waking up in the wee hours of the morning with a soaked shirt courtesy of Christian's drooly mouth should have been a dead giveaway, huh? (I'm not exaggerating. My shirts were soaked through with drool from collar to bottom seem.)

This morning I rubbed his little mountain of a molar in the back of his mouth and he bit down on my finger and looked as if to say, "Awww, thanks Mom, that's what I needed."

Sorry I didn't figure it out sooner, son.

Sleepless in Holland

It's one o'clock in the morning and I'm blogging. The party never stops around here.

Christian has become a night owl in the worst way. I used to listen to tales from other parents of special needs children. These tales told of sleepless nights and children that wouldn't go to sleep.

I knew nothing of the sort! Christian was always a good sleeper...a great sleeper. He would go to bed when we did. And if he did wake in the night he would lay quietly in his bed staring at his twinkle lights until he drifted off to sleep again. Not a peep out of him.

Then he woke up. No, I don't mean woke up as in woke in the morning. I mean for the past few weeks the haze over Christian's eyes has lifted and he's woken up. We've seen better weight baring in his upper body, his head control is better than it's ever been. In fact, he's even lifted it straight up past his comfortable 45 degrees. There is less seizure activity, more responsiveness, just such great things lately that make me so proud and excited and reassured that we made the right choices for Christian.

But there are trade offs. Like now that he's more "awake" he's decided he's got an opinion. He does not want to be put down in the evenings. In fact, he will cry and carry on until he's held. As soon as he's put down again he will cry. Sometimes immediately. For the most part of any given day he wants to be held and/or played with. He no longer lays around content with staring off into La La Land. He now needs to be entertained and stimulated more frequently or he lets us know he's bored.

Speaking of being more awake, this holds true for night hours, as well. Now his sleep schedule is all over the place. Actually, I should say he doesn't sleep nearly as much as he used to during the day. Mostly, because he's hardly on any medication anymore. And during the night he's made himself a little schedule. He goes to bed around 8 o'clock and then wakes up at about midnight. He then stays up for about an hour or two and will not be content unless he's held. He whines and cries until I get him. And after a few nights of proving to be his new routine, we ended up on the couch under a blanket crashed out until the wee hours of the morning.

So I've given in. Fine. We're not going to bed until 2 AM. That's just how it's going to be. It's a fair trade off for a little boy who's trying to wake up, I think.

We're up late, the both of us. I'm sitting here typing away with a crooked back and a giant two year old on my lap. Can't put him down, he wouldn't have any of that.

And now I'm part of the Sleepless in Holland Club. I've arrived.

Guess What's Up?

Guess what's up?

Christian's head, that's what!

TIIIMBERRR!!

Helping keep his mouth closed while he has his head up. He's not thrilled.

       

 Admittedly, I assist him in positioning him in prone positioning so he can get a chance to work those muscles. However, the lifting of the head is all Christian. And half the time it's totally unprovoked! Meaning, I don't have to tickle his neck, clap in front of him, get his attention, hop around on one foot, sing a song, or promise him candy. He's doing it on his own! That last picture on the bottom right was taken from across the room. I caught him in the act! His upper body strength has increased so much in the last few weeks. What's the cause? My best guess is a mixture of the keto diet, weaning seizure-zombie medication, and a hell of a lot of prayer.

Why am I bragging about how insanely proud I am of my little blond boy? Because I've had some rough months. And I've been waiting not so patiently to be able to post something fun and new and finally...FINALLY...that time has come. And I'm taking that time to shout it from the rooftops, dammit. Did I mention I was proud of my boy?

Because if I didn't, here's another reason...

Christian has vision therapy once a month. I love, love, love his vision therapist. She always brings great perspective at reading body language and response. She also has really simple solutions to get Christian's attention. Well, it was time to test his vision again. She tests his vision using acuity cards. You can read about them here.

They look like figure A....

 Photos can be found here.

The cards on the left are place horizontally in front of the child. The vision therapist looks to see if the child can "find" the stripes and whether the child moves his gaze to "look" at the stripes. The thinner the stripes, the harder it is to see. The stripes appear on the left and right side of the card. The vision therapist will turn the card the other way to see if the child searches for the stripes on the other side of the card. This tests his right and left side vision fields.

Well, I'm happy to report that Christian improved by four cards! His vision approved from approximately 20/960 to approximately 20/260. I am so excited!

Just to review, Christian has Cortical Vision Impairment (CVI). This means that his vision impairment is not actually about whether the eye can see. In fact, his eye has the ability to have perfect vision. It's about how the brain allows that eye to see and how the brain, in turn, processes the information. Because of his injury, his vision is impaired. As the brain heals, so does the vision.

This test is also about responsiveness. It's the child making a choice to look for the stripes on either side of the card. To me, his level of responsiveness improving is even more exciting.

So, if you couldn't tell, I'm celebrating a little bit for Christian's recent accomplishments. They're small, but they're so meaningful to me and so emotionally hard fought.

Join me in shouting from the rooftops, won't you?!

Hope Springs Eternal

It's been a rough week in our community. Tucson is grieving. I know a little bit about that subject. See, first shock sets in. We couldn't believe it was our city. Couldn't believe it was our street. Our neighbor. Our Congresswoman. And now there is sadness.

Tragedy is sad. There were lives lost that day, a judge, a little girl. But tragedy also gives birth to miracles. Gabby Giffords is doing amazingly well and her recovery has been a miracle.

I am particularly proud of my community. My hometown of Tucson, Arizona. The people of this community have lifted the victims and their families in prayer, gathered at the memorials left by thousands, and wished for peace and healing.

The kids and I visited one of the memorials. The memorial at Safeway, the location of the shooting.

What was a week ago a crime scene is now a memorial. There are candles and handwritten notes lining the sidewalk. It was quiet there and reflective. People came to pray and cry. It's very sobering to stand in a place where lives were taken. There were people streaming in and out of the Safeway going about their shopping business but it was still quiet as if nobody knew when it would be okay to talk again. There is a heaviness in that Safeway parking lot. It's an uncomfortable heaviness that lives were ended. Young lives. And I can't shake the heaviness. I think the heaviness I'm having a hard time shaking is the realization that this life we have is incredibly fragile and very temporary. As if I didn't know already, right?

I am sad but I am proud. This is our home. I'm proud of this home.

Know what else I'm proud of?

Ben's Bells.

I know, I know, I've already told you guys about Ben's Bells. But they're just really cool and what they've done is really positiveand spreading kindness has never been more needed than right this very moment.

See for yourself.

Visit msnbc.com for breaking news, world news, and news about the economy

And know what's even cooler? Kindness is spreading! No, really, kindness is spreading to Denver, Colorado this summer. My dear friend Jenny and her gang are going to spread Ben's Bells kindness like nobody's business. Be still my heart, I just cannot wait!

Know what else I'm proud of...you guessed it!

This Guy!

My Chrissy-Pooh.

(Guess he's decided to finally start working on closing his mouth! We're getting there!)

Yes, life is terribly fragile. So appreciate it. Hold it. Love it in all of it's forms.

Hope Springs Eternal.



Keto Clinic Jargon

We had a great trip to Phoenix today to visit the neurologist and dietitian at the Keto Clinic. The Keto Clinic is a chunk of appointments set aside for all the kiddos on the Ketogenic Diet.

The funniest part of the whole appointment is that I left Manny and the kids in the waiting room while I went to the bathroom. When I came back I walked into the wrong waiting room and guess who was there...the girl from church, Gen, and her Cici look-alike! As soon as I walked in, she looked up and I pointed to her and squealed out something like, "Hey! It's you! I know you!" She squealed back so it was all good. I'm sure the neurologist really appreciated the interruption. But when the dietitian finally came to meet with us, Gen, her husband, and Cici Look-alike followed into our waiting room to say hi! We said hello, introduced our husbands, and Gen said hello to the kids. We found out that every time there was Keto Clinic we would be seeing each other. And we're long overdue for a playdate anyway!

Back to our appointment...we met with the neurologist and reviewed Christian's current status and progress. I mentioned to her some new developments and the hard time we went through in December. She's really nice and gets right to the point about things and plans of action. She's really there for consulting as part of a team but she's careful not to step on our current neurologist's grumpy toes. For good reason, I mean, they're kind of colleagues in that they all know each other. But I'm feeling like I might want to switch! The neuro today mentioned that Christian looked really good and looked like he was doing great. And when I thought about it, our current neuro has never once said anything about Christian looking good, doing well, or anything really positive for that matter. It's not like he goes around saying negative things. Frankly, I think he's a little afraid to say anything to me outside the bounds of names and doses of medications because I've been so assertive with him. But it was nice to hear someone neuro-minded say how good Christian looked. Hmmm...I'm thinking it might be time for a change.

Anyway, after we were done meeting with the neuro, the dietitian came in. The neuro deals with the brain, the dietitian deals with this diet. I know, so obvious. But really our main contact with this diet stuff is the dietitian. And she's really helpful and accessible.

We went over a lot of stuff. And there are a lot of little changes to come. First, I mentioned that I started seeing some changes as far as his progress and development and seizures when I added 1200mg of fish oil again and this was two weeks ago. I was thinking that maybe it's not just the fact that fish oil may be beneficial to the brain, but also simply because it's an oil and an oil is a fat, which may increase the ratio of the diet. So heading in that direction, we've decided to increase the ratio. He was at a 3:5:1 ratio and now we're aiming for the strongest ratio 4:1. So we're adding more fat and lessening the protein. We'll see if this little change does anything as far as seizures go.

Christian's sucking and swallowing are still as strong as ever so now that we've got the diet down. The dietitian is going to come up with some recipes for tasting and eating by mouth. This also throws off the ratio, so we have to account for anything taken by mouth.

We've been weaning off of Sabril (Vigabatrin) and I've definitely seen the benefits of this. It's like the lights come on when the drugs start to go away. We discussed maybe adding a little Lamictal after the Sabril wean but we're just going to stick with the full Sabril wean for now and then assess the situation. Especially since we're thinking of trying out Amantadine, which I will dive into in another post on another day. Basically it's a brain stimulant and it's on our radar. Again...for another post. And we can finally visit this subject seeing as how we have gained some control over things.

As for Lamictal, I'm not opposed to additional seizure medications. I've always said that I'm not anti-medication. I'm anti-medication that doesn't work! But I'm not against trying. I still want to see Christian off of medication and make the determination at that time.

Another thing we talked about was doubling the calcium supplement. Because Christian has had some bone issues as well as some tests that came back funky (we're retesting just to make sure it wasn't lab error), we're giving high doses of calcium and probably Vitamin D to follow.

And last but not least, the dietitian was able to give us some emergency formula. Yeah, it's so much fun when your specialized formula for your kid's specialized diet is on back order. But I'm an old pro at this back order crap by now. No use yelling at the feeding company. It is what it is. We just had to make a few changes, none of which involve starving my son.

So, yes, it was a great appointment. My questions were answered and I felt like it was a real team supporting us and our goals for Christian. Nobody second guessed me or yelled at me for not keeping seizure calendars. Nobody ever has yelled at me for that but you never know. We have a plan of a few little changes that are manageable.

We'll see you in April, Keto Clinic!

Journaling

It's good to write things down.

I started keeping a journal of Christian's daily activity. I write down when he wakes, when he eats, when he takes his meds, what his activity level is, accomplishments, seizure activity, and set backs.

I probably should have done this a long time ago but the whole task of writing down everything every day was daunting and overwhelming. But in December when the dietitian gave me a few papers resembling a calendar where I should scribble hash marks on each date to symbolize each jerk Christian had, that was daunting.

I couldn't run over to my little sheet every time Christian had a jerk, and, frankly, it became depressing looking at all those hash marks. And then when the frequency of the jerks increased...forget it. The papers were shuffled into a manila folder marked "Keto" and they remain there today. I'm not sure the dietitian will be happy about that but it is what it is. This is kind of my sanity we're talking about.

So I started recapping Christian's days and activities in my little journal. There you are, sanity!

I've got five weeks of journaled days and nights. It's given me a snapshot of this puzzle and I can reference really good days and look to see if there is any correlation with diet or environment. I've always been a more visual person and can memorize and learn things after reading them in black and white. This journal gives me a lot more learning moments than trying to rely on my memory. It makes me feel like I have some control in a situation is still uncontrollable.

This Keto journey has delivered us into Week 6. Christian's seizures and jerks are ever-evolving. I'd like to say I see an evening out of the activity, but if so, just ever so slightly.

I've seen other things, though! Like more head control. And me likey.

Christian has been rockin' it in the head control department. And it's really kind of all of the sudden. All of the sudden he sits in my lap while I'm supporting his midsection and he's just lifting his head. Like it's nobody's business and he's been doing it all the while. I don't have to coax him, or tickle the back of his neck, or hold his shoulder back. I guess he just decided that maybe he finally wants to know what's going on.

Now, excuse me, while a barrage you with more pictures of my son trying to hold up his big noggin'.

This is the progression of what he's been doing. He starts totally flopped down, then comes up a little more, and then holds it there...for, like, minutes! Like it's no big deal!

I love this boy! He can get his head up completely but he likes to hang out between 45 and 90 degrees. Whatever works, Dude.

And it's consistent! Every day he's keeping it up, for no apparent reason other than that he just feels like it now.

Well, I don't know if it's for no reason. It could be the Keto diet. One thing I have noticed is that throughout the day Christian will have these periods of clarity. He's interested in toys, he looks at us when we talk to him, and I don't know, but I'm thinking it might be the diet. I've heard progress in other areas can happen while on the diet whether or not someone is seizure free.

Oooh, claaaaarity!

On his good days, during tummy time, if he's supported just right, he will actually extend his arms forward to touch that toy.

One thing that's been happening the last couple days is crying. And crying, and crying, and crying. It started late in the afternoon with whimpers. Whimpers turn into whines. Whines turn into crying. And crying doesn't stop until Mommy and Daddy are holding him. Just to test if that's what makes him feel better, we put him down...and the crying starts again. So Manny and I have taken turns for the last four nights holding our boy until he goes to sleep. He certainly knows how to work us.

Thursday we're going to the Keto clinic at PCH for our check up. I'm excited because I'm hoping we'll be able to make some tweaks to this diet and get some better results in the seizure department.

Tonight I'm thankful for the sanity that journaling and blogging, for that matter, brings me. And I'm thankful for those who read this blog and keep up with my rants, raves, sorrows, struggles, and celebrations.

Tonight I am also hopeful for some things to come for our family and for Christian.



Close To Home

Well, it was a tragic weekend here in Tucson. Congresswoman Gabrielle Giffords was shot along with 19 other victims at a grocery store gathering on Saturday morning. This happened about ten miles east of us and we discovered the shooter lived very close to us.

A little girl, Christina Green, who had just been elected to her own student council had shown up to see Giffords and was tragically shot and killed along with the same federal Judge Roll who just swore my best friend in for her new job in the federal courts.

All of it is just too close to home.

It all reminded me how quickly life can change. Literally in a single moment, our lives can dramatically change forever.

At the time this happened I was in between trying to get a little sleep during the kids' nap time and giving them a bath. I was doing normal things around the house.

It's a different perspective on a tragedy one has when you've experienced the other side. It's like opening a window and seeing something nobody else has seen unless they've experienced that magnitude of pain. And even after what we've been through, there are still windows we haven't had to look through, thankfully. But some of the families - the families of those who didn't make it - have to look through those windows and that makes me sad for them.

Seeing my hometown and even my street where my son bikes and we go trick or treating every year plastered all over the local and national news is so surreal and, again, so figuratively and literally close to home.

Giffords is still pulling through, but is still in critical condition. Tucson has some great hospitals, but I have to say that I feel a teensy bit better that she is being treated at UMC because that's where my two younger babies were born and that's where my baby boy battled and survived.

My heart, my thoughts, and my prayers are with those who lost loved ones in Saturday's shooting.

And with both of my babies crying at around 2 AM in the morning unsatisfied unless simultaneously held by me and falling asleep with both of them on the couch in the wee hours of the morning, through my frustration I had to be thankful.

Thankful because there was a time where I prayed for that. Thankful because a tragedy can be more than close to home. And thankful because it can all be taken away in a single moment.

Little Soldiers

I was all set to complain to you guys again about jerks and keto stuff and I was all ready to talk about seizures for the 75th time.

I was also all kind of blah about writing tonight, not having anything fun and exciting to say, and then I read Owen's blog! He is the little soldier I got all crafty for. Well, even though he wasn't feeling great, he gagged for the first time in a long time! That's really great for his progress because I don't know if you guys remember how big of a deal it was for Christian to have a cough and gag reflex.

Reading about Owen made me think about what strong kids we have so I want to give a shout out to the O Man! His family is also settling into their new normal and it just made me smile to read about Owen's little sister crawling all over him. I can relate just a little.

Look! It's Baby Owen playing with his sensory board!

And here's a picture of Christian playing with his sensory board from Cici's Mommy. And Lola is "helping."

Lola crawling all over Christian.

She crawls on top of him and if she catches me staring her down, she immediately lays her face against him and goes, "Awwwwe," to show me she's being "gentle." But she will eventually get a poke or a pull in at some point.

God bless our little soldiers.

2010: A Look Back

The first day of 2011 was like a "non-day." We didn't do anything but sit around watching toys pile up on the floor as Lola left a trail everywhere she wondered. It was one of those days where I got to sleep in really late and have chocolate cake for lunch. I didn't feel overwhelmed by the mess or the unproductiveness (if that's not a word I just made it one) of it all. It was a "non-day" with no purpose to it but just being. Being with each other as a family, being with the TV and it's movies we've already seen a hundred times and being with take out food and...chocolate cake. What a perfect way to start out the new year.

It's a far cry from what 2010 was. Yesterday I was thinking about it and wondering - What did we do last year?

Well...

In January we were doing HBOT, pretty much five days a week. Christian was pretty irritable at this time and cried a lot through the day until he fell asleep in the evening. We also started receiving durable medical equipment and therapy toys. We started considering Botox injections for tone and Christian started vision therapy with our awesome vision therapist.

February brought Christian's first chair, a false alarm with his hips, and an impromptu try out for a few days at NAPA therapy center in Los Angeles. That's when we got our first taste of what intensive therapy was like. It was also Christian's first trip to the ocean. [LOVE]

March was a big month for Christian. Christian started the month receiving his awesome quilt from the August Moms that hangs on the wall right now overlooking Christian and his little sister in their room. Every time I look at it I feel peace and love and it's like I'm looking at it for the first time. And then the BIGGEST news...after nine months Christian lost his trache tube! We met new super mommy friends and super kiddos in Denver and tried out ABM therapy. Christian also rolled from his side to his back for the first time and got his first haircut. We ended out the month with his first EEG to see what all those pesky jerks were.

In April we continued with another ABM intensive session closer to home in Phoenix and Christian was able to get in the pool for the first time since his stay in rehab. In April we finally got to the bottom of those jerks and unfortunately they were seizures - infantile spasms to be exact. We started our trial with Vigabatrin (Sabril) to hopefully rid Christian of these horrible nuisances.

May brought Mother's Day and Mexico! We had an amazing family vacation to Mexico where we put Christian's feet in the sand and soaked up the sun. Christian was so relaxed and it was then we knew for sure our boy was a beach bum.

In June, Gabe and I learned CPR, which was something very important for both of us to do as part of our healing. We also spent a week at NAPA therapy center, which was awesome! Seizures also returned and it was at this time we were wondering what to do next. Despite his seizures and irritability being at it's worst this month, Christian miraculously passed his swallow study! We press on tasting and eating by mouth!

July was a biggie because it was the one year anniversary of Christian's accident. It wasn't heavy, though. We were surrounded in love both near and far. We also attempted a few other things for seizure control but they made things worse. Fortunately, we were able to move past those options quickly. Lola also started ISR, which is an infant swimming rescue program. At this point Christian's tone and extension greatly improved and he stopped throwing up after almost a year of constant vomiting every day.

Christian turned two years old in August! We also made plans to go to Euro-Peds and Christian continued to be vomit free! He even started gaining a little extra!

Between August and September we held our 2nd online auction and 1st Panda Express Fundraiser. We also went to Michigan to do a two week therapy trip at Euro-Peds! It was a great trip and further strengthened our belief in intensive physical therapy. It was during this month that I finally made the decision that we would give the ketogenic diet a try.

October and fall brought pumpkins, Halloween, and a new realization that we might need to try one thing at a time. This was particularly difficult seeing as how I'm a multitasker! However, we started gearing up for the ketogenic diet and slowing down with everything else.

In November, while waiting to begin the ketogenic diet, we spent some time with our new friends on play dates to the park and to the zoo. More head control and weight bearing returned after a few months of Christian being a noodle. Christian also got a new bed from Daddy and a new light box from his vision therapist.

In December we finally started the ketogenic diet. It was tough and still continues to be, actually increasing seizure activity rather than decreasing it like we expected. As of now the jury is still out. But a very high point of December - Christian's "first" picture with Santa and Mrs. Claus.

..........

Okay, I needed that.

I was kind of dreading the recap, but I felt like it was my blogger duty to do it. So I reluctantly sat down at the computer and scanned through all of the 2010 blogs and it was very evident that we, in deed, did make some progress.

It's hard to see and realize progress when you come out of a tough month. And I will fully admit that December, out of all months, has been our toughest by far. Despite our setbacks, Christian has come so far! No trache, no throwing up, more movements, passing swallow study, reaching...did I mention no vomiting? That has made life so much easier.

As for what we have planned in the coming year...tweaking the keto diet, we have a new specialist on board with some new possibilities, a trial study for treating tone without medication, we might possibly visit the cranial sacral doctor again, and we will be doing more HBOT. I'd also like to make more plans for another round or two of intensive therapy and there are a few more things up in the air. You never know! Most of last year's trips were planned with about six weeks notice. I'm impulsive like that. Or maybe it's not being impulsive, but rather just noticing when doors (and windows) are open. And then I immediately make plans to jump through them and quickly.

And those "non-days," I'm hoping to have more of those. Because what they really are, are days full of meaning and just being present with my family.

There is something about the New Year that signifies so many new possibilities and hope. And despite my weariness, I still have hope for my son.

Dum spiro spero.