ISR

So we're ending our fourth week of ISR lessons for Lola and I really, really love this program.

A local news station did a story on the program the other day after our lesson. The video is taken at our instructor's pool but the interview and lessons are given by a different instructor and another little ISR baby.

Before I finally post about how much I love ISR for Lola and why, I wanted to post the news story so you all can learn a little about this program and see it in action.

Click here to view the news program about ISR.

I will soon be posting Lola's videos (I know, come on and do it already!) and explaining why this is such a great program and why it's so important.

Enjoy!

P.S. It's Gabe's birthday tomorrow! Happy birthday, baby!

Potpourri

Potpourri blog time! A little bit of everything...

About two weeks ago Christian started on a medication called Prednisolone (Prednizone). It's a steroid. There's been some efficacy of paring this steroid with ACTH and/or Vigabatrin for seizures. Christian doesn't have as many jerks as he used to but he still has them, especially coming out of sleep, which is typical. So we're looking for optimal seizure control, the neuro suggested this steroid and said we'll know quickly whether it helps or not, so I said what the heck. What about the Ketogenic Diet you ask? Well, it's in the works but the momentum has slowed because it seems nobody has a lot of experience with it. I'm getting a little run around, but nothing new there.

The results of the steroid as far as seizures are concerned...meh. I'm not sure either way. There were some weird things going on and some shifting and confusion and, "...was that one?"

But the other side effects were awesome! Christian was stronger, much stronger. I saw him more awake and more cognitively aware then I'd ever seen him since the accident. This medicine woke him up. He ate by mouth better, he looked clearer and more aware, he was more vocal, I mean this stuff was great! But, alas, the neuro said we couldn't keep him on it forever so we should start tapering off since the main reason he was on it was for seizure control. But I don't wanna stop! (Pouting). We've been tapering since Friday and the last two days I've seen a difference in him. I've seen more jerks and more lethargy so now I'm confused. I'm thinking of continuing with the higher dosage until I can talk to the neuro again about maybe keeping him on a steroid that he can stay on. I just love the results! So to be continued...

Shhhh. Don't say it out loud. I have to report that Christian has not even attempted to throw up for two weeks. Not one single time. This is such a big deal. Even when Christian has gone a week or so in the past without throwing up, there were always attempts here and there. But he has not thrown up at all. Because of this I've been able to increase his caloric intake pretty close to where it's supposed to be. Fingers crossed and prayers it stays this way. But it seems that if you write something like this down, it lets the universe know and then the universe says, "No, sir!" and Christian starts throwing up again. So let's just keep this on the down low. Mmkay?

Gabe and Christian are celebrating birthdays this week! Gabe will be 12-teen on the 29th and Christian will be the big 2 on the 1st of August. It all just happens in the blink of an eye. And then they're big!

Speaking of Christian turning two, this means that in a year he'll be eligible for preschool and I'm super excited that the preschool for our district is really good! They have normal kids and special needs kids and they're equipped for kids like Christian. I'm so excited for him. So that means that this time next year we'll be getting ready to send him to preschool where they'll have PT and OT and everything he needs. This mama is a happy mama.

Oh yeah, I almost forgot...botox! Christian got some last Friday and now he's Mr. Noodle Legs. He got two injections in each quadriceps (front of thighs) and two injections in each adductor (inside of thighs). It takes a few days to set in but bending his legs now takes very little effort, he doesn't fight knee stretching, and he doesn't automatically extend when a position is released. So pretty much all good things. Mama likey.

The local news just did a story on ISR and I'm trying to get a hold of the news clip to post the video so you all can see what it's about. I've taken video of Lola and we're just finalizing approval of the video. I can't wait to post and share this program with you guys. I love ISR and I'm waiting to sing it's praises until I'm able to post video. 

There are a few more things in the works and I'm pretty sure I said that last time or the time before, but I'll be sharing over the next week or so.

Stay tuned!

Beautiful Flower

I wrote and rewrote about 9 blogs but I just couldn't get my words together. I was going to write about the visit to the Neurologist last Friday, the steroid therapy Christian tried last week, how much I love, love, love ISR, and some upcoming things this week, including two of my babies' birthdays.

But I couldn't get my head on straight because I kept thinking about another family.

This family suddenly lost their little fighter, Samantha, on Sunday. She fought and fought until her fight was through and it was time to go home.

Her mommy, Heather, is a blog mommy friend of mine who I know through blog and facebook comments. But through her beautiful writing, I knew her story, I knew Sam's story.

Sam's story was a hard one, but even through words on a blog there was joy, there was celebration, there was humor, and there was peace.

I am in awe of Heather and her persistence and positivity when it came to being Samantha's mother. I am inspired by her every day. Reading her entries inspired me not to ever feel sorry for myself and our situation. What we do is still parenting - whether it's burping babies or changing g-tubes - it's still parenting, no more and no less.

My heart is heavy for her today and she's in every other thought. She and Sam were and are a continued inspiration. For such a little thing that Sam left a mighty big footprint on this world.

So I'm taking time out of my appointment-swim lessons-medications-complaining-hbot-day to day happenings to simply remember Sam. 


"The flower that blooms in adversity is the most rare and beautiful of all."
-Emperor from Mulan

Rockin' the Boat

Christian has been on fire lately!

He has been seriously rockin' it.

Gather 'round folks, it's analogy time.

See, this journey is very much like being on a boat in the ocean. Waves take you forward and back, side to side, there ups and downs. Some times the seas are calm and sometimes they're hell. There are also times we hit dry land. This isn't as bad as the moving back or facing a downturn, but it isn't the greatest.

Hitting dry land is the waiting game at its worst. It's when nothing happens. Nothing changes. When someone asks if your child is doing anything new, you reach and reach to the back of your mind and all you can come up with is, "Well...."

But then the boat takes off! Sometimes you're not even informed the boat is about to set sail, it just starts going. Well, this boat has left the dock and I'm just starting to catch my breath!

First I have to say the eating is going great. We visited Christian's GI doctor and his blood work to evaluate his nutrition is pretty close to perfect, which is to be expected taking already supplemented formula.

The GI doctor was so excited that Christian not only passed his swallow study but had a "strong swallow," according to the report. So naturally the GI doctor wanted to know how much I was feeding him. I told him we're only doing breakfast right now. He suggested maybe we try three feedings by mouth a day! Ooookay, doc. Let's slow down a little. We're going to do what Christian wants to do. And if you want Christian to do something, you better get him to do it before 2PM. After 2PM, Christian is done for the day.

So I put Christian down on his boppy pillow for tummy time and Christian initiated pulling his head up all by himself. This is a much better tummy time position for him because it protects his g-tube from too much pressure, which can sometimes bother him. By the way, Christian stayed like this for a good 5 minutes! I couldn't believe my eyes. He lowered his head and picked it back up again. He held himself up like this long enough for me to make a huge deal of it, run around and look for my camera, locate my memory card, put it in the camera, and finally make it back to Christian (who was still holding himself up) to snap pictures.  

And then he held himself up nice and strong (with a little support from his PT for his huge noggin) with straight arms. I can't even begin to tell you how proud I am of this kid. Do you know that just months ago we had to work to even get his wrists to bend back like this? Now it's pretty effortless. SO HUGE!!!

All in all it's been a pretty busy boat ride these last couple of days. And we've moved forward a little so that always makes for a nice sail.

Now, I have to get to bed. Gabe's going to sleep away camp tomorrow! I'm so excited for him!

Elephant in the Room

I feel like I need to address some things. Some things are easier for me to address than others. Some things...well, I just wasn't quite ready for, but I feel I should address them anyway.

Buckle up. This could get lengthy.

Anonymous: I've seen you on other blogs. You are not one person, but an accumulation of various posters content to comment in any way you'd like without signing to it. Happy Anonymous posts are always welcome. But it's those annoying, pesty, rub you the wrong way comments that sneak their way into your blog that are not so welcome. It's part of blogging. It's part of opening up our lives to those who care to read. And I knew it was coming. Every time I scrolled to the comments section to read comments (and I read every single one of them) and every time I noticed an Anonymous post, I'd get nervous. Is today the day I'll get that comment? Well, yesterday was the day.

As far as the comment I'm referring to, there was nothing unreasonable or untrue about what was written. And I appreciate the concern. I'd be happy to address any safety measures we've taken. However, I'm not sure the intentions were truly sincere. A private message addressing the concerns about the safety of my children would have sufficed. The suggestions in the comment rather came off as calling me out on my blog - and using a very joyous and celebratory post, at that.

Safety Precautions: I've mentioned in this blog previously, but to those who are unaware, we no longer live at the residence where the accident took place. In fact, Christian has never returned to the house since he was taken from there in an ambulance. Kind of on purpose, kind of just by circumstance. But because I didn't have to take him back there, I didn't. Plain and simple. We now live somewhere that has no pool. Although, there are pools in the neighborhood and at relatives' homes.

We're also up to date with our child and infant CPR skills.

Lola is also enrolled in ISR classes, which I will also be posting about at a later date. But I will say that I really believe that ISR will be hugely beneficial to Lola in preventing another near drowning.

What I will say is that I get it. I used to be that person. I used to be the person who needed to understand, who needed to have a reason laid out for me so I knew what went wrong and I could avoid that scenario where things went wrong (I still that person on most issues). And then I could look at that person and say, "What's wrong with you? I'd never let that happen to my child. NEVER." I used to be that person, I'll admit. And then it happened my child.

It can be anything. Choking, drowning, running into the street, ingesting toxic chemicals, every household accident is just a minute away. As far as drowning goes, I'm sorry, I'm not going to be the poster child for pool fences. And the reason why is that I've met many on this journey and heard many stories. Some of those stories include children who've nearly drowned or drowned in pools that had fences. Some of those stories include children climbing over block walls to get to a pool. Two children last summer died after drowning in a pool that had a fence. So I can't get behind the whole a fence will save everyone argument. I just can't.

What I will get behind is what Lola's ISR instructor said...the more barriers the better. However, when it comes to kids and water of any kind be it a pool, a hot tub, a bath tub, or a bucket of water, nothing rivals constant supervision.

The Elephant In The Room:

Sometimes I wonder what people are thinking. They must be thinking, How could this woman let her child almost drown? Where was she? Why wasn't she watching him? I know some people think this because it's what I would think. It's what I thought prior to Christian's accident. I made a huge mistake that day. A huge mistake. I take full and complete responsibility.

You get comfortable in your surroundings. I thought Christian was safe in our house. I never even second guessed it. He wasn't even walking at the time. I didn't for a second think he could get out of the house.

I can't give you any magic words of encouragement that if you just do x than y won't happen to you. Don't think I don't know how much fault I carry. It's with me every day of my life and I will never forget. You know I don't even wear the outfit I wore on that day. I can't throw it away. It stays folded at the bottom of my drawer so I never forget to be careful. So I never forget what I felt like when I lost my child and to never make that mistake again.

I didn't post all of this in response to Anonymous. I've been wanting to post this for a while but I wasn't ready. I still don't feel like I was completely ready nor do I feel completely like I'm articulating my thoughts and feelings on this issue very effectively. I really wanted everyone to know it all. The guilt has been a huge weight on my heart for a long time that is slowly subsiding, but may never really recede completely.
\
One thing I have learned in this journey is that there is a kindness and human spirit I've never witnessed in my life. There is redemption and there is forgiveness given by the grace of God. I haven't forgiven myself for what happened. I will someday, but not today. There will come a day when I won't think about everything I should have done differently. And over time, the days have become more joyous and less sorrowful.

As moms, as parents, all we can do is our best. The truth is we're all just a moment away from tragedy, from a mistake, from a life changing event. Bad things happen in this world and in no way am I using that logic to exonerate myself.

But it's how we rise from the ashes that defines us so, excuse me, we're busy risin'.

Bon Appetit

Things tend to sneak up on you when you're not paying attention, or when you're paying attention to

something else.

Those sneaky things aren't always negative, which is cool.

As I was focusing on Christian's one year anniversary, the video, controlling seizures, a much needed haircut for Christian, along with a million other non-Christian related things, I've realized that all of the sudden Christian is really good at eating by mouth! I've been relaxed about the eating by mouth issue taking on the when it happens, it happens mantra. Well, I guess it's happening.

For the past week, I've seated Christian and Lola next to each other every morning to give them breakfast. Lola gets some sort of pureed or mashed fruit every morning so I thought I'd start giving Christian some of it. Besides, it's never too early to teach sharing, right?

I'm so surprised at how well he's doing. I'm not surprised that he's doing well, I'm just surprised at the all-of-the-sudden-ness of it. Especially when we have to wait in a painfully slow motion for everything.

So here's Christian...eating breakfast. Like, actually eating breakfast. Bon appetit.

Photo and video editing at www.OneTrueMedia.com

Furthermore...

• Thank you to everyone who left such lovely and amazing comments about our video of Christian. I'm so thankful for everyone who loves this kid! I'm not really surprised, though. We love him, too.
• Lola is enrolled in ISR and I can't wait to tell you all about it. But it is so much better with the video and I have to wait for approval on that. So more to come on the ISR front...

Meet Christian

Okay, I feel like this is my right of passage.

It's time for my first video montage!

Everybody loves a montage, right?

This is the very first one I've ever made and I feel really nervous exposing it. I know that sounds funny but I feel like it's my heart right here for everyone to see. Yes, I know, I've been exposing everything since my very first blog post. But this is different.

A few things...

The montage chronicles Christian's life since he was born. I thought it was important that everyone know him from the beginning. Many people who follow Christian's Journey only know him from the time of the accident. So I want everyone to know him from before the accident, as well as who he is today.

It's also important for everyone to see not only pre-accident, but how far he's come from just after the accident. I'll warn you now that there are pictures that may be difficult to look at from when he was in the PICU. But they're part of Christian's story so I thought it was important that everyone see just how far he's come.

I thought this would be a painful right of passage, but I was sorely mistaken. I'm really proud of this video because I'm proud of the people in the video. When I watched it for the first time, I felt proud, happy, and hopeful. And every time I watch the video I have a big smile on my face at the end.

It's long! It's my first video so I had a hard time scaling down the pictures and videos. So if you can spare ten minutes (yes, ten minutes!), you'll have the opportunity to get fully acquainted with one of the loves of my life - my beautiful boy - Christian.

Meet Christian.

Make an on-line slideshow at www.OneTrueMedia.com

One Year

"Sorrow looks back, Worry looks around, but Faith looks upwards."

(Thanks, Maz!)

I was day dreaming and letting my thoughts wonder off. I was thinking about the movie Titanic and how at the end of the movie, Rose dies and goes to heaven. In heaven she is young again and starts to approach the staircase on the Titanic and all of her friends, including the love of her life, Jack, are waiting for her. As my thoughts were in the movie I picture myself and the afterlife, approaching a staircase with all my loved ones and someone handing me 11 month old baby Christian, before the accident.

I was struck by a sudden feeling I couldn't put my finger on. It was completely unfiltered and it hit me out of nowhere. The feeling was of sadness and longing for the Christian I had now. I thought, "Where was the Christian I have now?"

This all may sound weird, this day dream. And it may very well seem like I might have too much time on my hands to be day dreaming such stories.

But I was struck by the feeling of longing for the Christian I've grown to love again. I mean I loved him before. But I am deeply, head over heels in love with this boy just the way he is and in all that he'll become.

Today was the first anniversary of Christian's accident.

I think the hardest part of this day was encountering everyone who knew today was the day. Everyone was a little eggshelly with me, wondering if I was going to break down, wondering if I was okay.

I was okay. I woke up thankful that there was a little boy laying in the crib waiting for me to give him his breakfast through a g-tube. I'd much rather be doing g-tube feedings than visiting a grave site today. It's all about perspective.

I was more emotionally struck by the outpouring of support I received today. It was simply a showing of love, no eggshells attached. My favorites were a text from a loved one offering to bring me my favorite McDonalds Coffee drink if I wanted.

Another favorite...

A book arrived today with heartfelt letters from my August Mamas, Cici's Mom, and Marissa's Mom. I read every single word of every single letter. I was reminded of how the human spirit is so great and of how much of an impact Christian left on the hearts of so many. I just can't really put into words just how blessed I feel to know these women. On top of that, they made sure I received the book today. It's really those little things that get me all warm and fuzzy.

I also got a barrage of emails and facebook messages and comments letting me know everyone was thinking of us. I really don't know how people do it alone. I felt so much support and love today.

We had plans to go to dinner tonight to celebrate Christian's life. As the day closed in, the time of day when Christian's accident took place was upon us. It was around five in the evening. And conditions were the same, ironically enough. I say ironically because I remember being in the ambulance with Christian on the way to the ER. It was a rainy, monsoon evening, just like the one that brought him into this world. It hasn't rained in months and the monsoon is kind of late this year. But today, as if on cue, it rained. It started raining around the exact time of Christian's accident.

I don't know how to explain the feelings I was having. I felt almost as if a force was trying to show me - See? Remember? Don't you want to cry? It's just like that day.-

But I didn't. We were, after all, on our way to celebrate life. I looked up to the sky and said a little thank you prayer through the sprinkles. I opened my eyes just in time to see two birds flying. Blackbirds maybe? It was profound and somehow I felt God's presence all over the place. If it seemed like I was looking too hard for signs and meaning in this day, I didn't have too look too far.

We drove to dinner through more sprinkles, reminding me of the ambulance ride to the second hospital that evening. Instead we were on our way to toast with family to Christian's life over dinner.

Once the time of the accident passed I felt an overwhelming sense of gratitude. I played the this time last year game all week and all day. But once that moment passed it was, this time last year my son was in the PICU fighting for his life, this time last year we didn't know if he'd live, this time last year we were holding his swollen little hand and praying our hearts out.

Where we are now is 100 times better, maybe even 1000 times better. And with all of the challenges and setbacks, there have been triumphs and celebrations. This journey has brought out the best in people and their ability to love someone they've never even met. Christian has taught us what deep unconditional love, hope, and faith are.

Although this life is hard and painful, there is beauty. And out of tragedy comes growth. Christian will prevail in his own way and just like that day I dropped to my knees and begged God to give Christian back to us, no matter how he gave him back, I still stand behind it. God has plans for that boy, I'm sure of it. God gave us Christian not once, but twice.

Now can I get a high five for that?

(Sorry if your neck hurts.)

And in the words of my dear friend, Jenny...

And now, we go forward!

Fireworks

Fireworks!

That is the finale to our Independence Day. In Tucson it always takes so long to get to fireworks because the sun doesn't set here in the summer until 8:30PM. Go time for fireworks is 9:15PM, which translates to about a 9:30-10:00PM start time. One year, the year I was pregnant with Christian, fireworks didn't begin until 10:15PM! It was a long and sweltering wait for those things.

July 4th was a bittersweet day for me. I really do enjoy holidays, especially having kids. It makes it so much more fun. There was food and beer and laughing and celebrating. Christian and Lola sported red, white, and blue, you know, 'cause they're patriots. We're blessed enough to have family to celebrate with, so why would July 4th of all holidays be bittersweet?

Well, the 4th of July was the last holiday we celebrated before Christian's accident. I'm normally not that "it was the last time we..." type of person but for some reason, the back burner of my stove top kept nagging at me.

It wasn't necessarily that it was the last holiday prior to the accident. It was more that I was thinking about myself outside of myself. This is how it went in my head:

You dressed Christian in a 4th of July t-shirt you got at Target.

He was all over the place. He ate potato salad.

You only had a few days left. You had no idea what was coming.

The emphasis of thought is really on how much time I had left with him. It makes it sound like he passed away, which he did not. But maybe it was more that I only had a few days left of life as I knew it.

Anyway, the day wasn't somber or sad for me at all and I apologize if that's the impression I'm leaving. The impending anniversary of the accident is approaching so the memory of last 4th of July was most definitely bouncing around in my head.

But I was also reflective. I looked at my three kids and, for a moment, was stricken with a deep gratitude that they were sitting there with me. I think because of how challenging last week was for us and how much better Christian is doing now made me that much more grateful. When you have a child who is fragile, when they're feeling better after some very serious stuff, it puts things in perspective. It makes you so grateful that they are just feeling better.

In fact, Christian was feeling so much better, he had 5mL of water from a syringe by mouth along with some lemon flavored Eegees. So Christian got to participate in some holiday noshing. And I mean actively participate - sticking his tongue out, sucking, and swallowing. Guess he likes Eegees, which is good because we go there...a lot!

And more participating...not always by choice.

This picture is funny because this is the position I got when I put him in his seat. And this is 100% by chance, no adjusting, no positioning, oh yeah, and no baclofen. He is just too laid back to care about sitting up straight.

And now for some silliness...

If you'll notice, Christian is sticking his tongue out. He was doing that all weekend! He would push his tongue out as if he was trying to say something.

So despite my bubbling back burner, 4th of July fun was had. And now it's metaphor time, folks.

See, that one day I referred to above, the day we waited all day and all night in the sweltering July monsoon heat to see our local fireworks display, it was worth it because 4th of July just isn't the same without fireworks.

I often feel like this journey is that day - waiting and waiting and waiting, in the sweltering heat...and finally...some fireworks, sometimes a small display, sometimes a grand display, but always fireworks.

And I don't care how long we have to wait.

Goodbye Crappy Week!

Wow, this was a crappy week. I'm a little surprised at just how crappy it was, honestly. I am happy to end this one.

We've had issues with medications and pharmacies and the like before. This one takes the cake.

Vigabatrin is called Sabril here in the United States. It's a serious medicine. Doctors don't keep samples in their drawers of it (I don't think), there's a national registry, papers to sign, eye exams every three months, and so on. So I can't just go and pick it up at our local pharmacy, it has to be mail ordered. I hate mail ordered anything because, in my opinion, there is just too much room for error. In this case my opinion would be correct.

About three weeks ago I spoke with our new mail order pharmacy about Sabril. They asked how much I had left and assured me our delivery would be at our doorstep within days. Great. We had a good two weeks worth of meds so it was all good. We went to LA for a week, we moved for a week, and Christian finally ran out of his medication. So, believing what the pharmacy told me, I went back to our old house to locate the delivery of our package. Yeah, it wasn't there.

I call the pharmacy. It seems the message never made it over to the pharmacy. Sorry, ma'am. We'll have it out tomorrow, it'll be overnighted.

Sorry? This isn't an order from Old Navy for clothes!!! This is a medication that explicitly states NOT to abruptly stop taking it! I don't understand the cavalier attitude from pharmacies who are unapologetically incompetent. I don't understand it. This is quality of life...wait, no, this is LIFE we are talking about here.

So Christian was off his Vigabatrin/Sabril for two days. The first day was no big deal. But he grew increasingly irritable. The second day brought some funny behavior. Christian started having what I believe were seizures I had never seen before. He cried and cried. He couldn't rest, he was uncomfortable, it was awful. Remember the swallow study? Right smack in the middle of day two. It got worse.

As soon as the situation went down I called the neuro and let his assistant know that we'd be taking Christian into the ER if we saw anything concerning. He sent a prescription over to our pharmacy for Clonazepam as sort of a rescue med if we saw anything. As the second day was getting worse, I decided to go pick up the medication. Oh, guess what, the pharmacy doesn't have any. They had been trying to order it for two days and can't get a hold of anything. Furthermore, none of the pharmacies in the entire northwest Tucson have any either! Except for Costco, which closes in 10 minutes so the prescription won't be filled in time.

Are. You. Kidding. Me?

It was so ridiculous, I couldn't even get mad. I was actually kind of in shock about the whole thing.

We hung in there. Christian probably had a lot of seizures that night. He wouldn't sleep. He probably slept about 4 hours out of a 24 hour period. It started to get a little scary. At about three in the morning on Thursday I decided I was taking him to the ER but I'd try one last thing to get him to rest - bring him into Mommy and Daddy's bed. The little stinker...it worked! He fell asleep.

His medicine was finally delivered yesterday and he's doing a little better. But that experience really did a number on him, I'm certain of it. He's still trying to recover. He slept last night for 12 full and uninterrupted hours. And this morning for the first time in a few days I saw him stretch his arms up and over his head again.

Now I know the medicine is working somewhat, enough that he shouldn't be off of it, at least not cold turkey. That's the hardest part - figuring out if what he went through was actually how he would be without the medication (which wasn't how he was before starting the medication) or if what was happening was withdrawal.

He's doing better now and I am so grateful.

As for the bright side of things...despite having such an awful experience, he was still able to pass his swallow study and I'm still seeing his quads work as they never have before (thank you, NAPA!). He's also been more interested in holding his head upright more often lately, even with everything yucky that was going on.

A few weeks ago this position would have been tough to get him in and almost impossible to get him to stay here. I actually walked away a couple of times to see how long he would stay like this. I took a bunch of pictures, but I won't go overboard so here's just one.

On his elbows lifting his head nice and tall.

Someone needs a haircut and it's not his PT!

I'm so proud of him! Despite two crappy weeks (he was sicky last week), he still perseveres.

Keeping going little soldier.