Pinwheel

So we're trying this new feeding schedule that has Christian eating a little more in volume and more frequently throughout the day. Today was the first day and Christian did really great! Not one throw up, not even an attempt. The GI doctor informed us this is better than trying to pack everything into a continuous feed (small amounts every hour) over night. But I was doing this because he hardly tolerated daytime feeds and I could get the maximum amount of calories in him while he was sleeping.

Now he does GREAT with his feeds during the day so we were able to add more. This helps give him more energy and keeps his blood sugars level. Today was Day 1 and if it's any preview of what's to come I'll take more!

Now, it could have been coincidence, stars aligning, whatever, but Christian was moving around more today than I've seen him do in a long time. In the HBOT chamber I could hardly keep a hold of him. He kept moving himself into different positions so we had to keep adjusting. This is such a far cry from that last few weeks as I'm sure you can tell in some of the pictures. Frankly, he's zonked. It's the Vigabatrin. Relaxation and seizure control come at a price.

But now, I'm not sure if his body finally regulated to the dosage or if the new feeding schedule is giving him more energy or a mixture of both. It was so cool to see him a little more alive today. I bought him a pinwheel (Target...$1 - score on a sensory toy!) and he really reacted to it today. He was grabbing for it, looking at the metallic material, and even got it from one side of his body to the other grabbing the stem of the pinwheel (look at those tiny, careful little fingers in the picture). Now none of this was graceful by any means but who cares! He was actually more interested in this pinwheel than he's been in any of his toys for a long time.

Oh, Christian's wrists are also looser. I think it's the recent round of HBOT, honestly. I love that stuff. Before, you really had to manipulate and massage Christian's wrists to bend back so he could weight bear. His right wrist was really hard to bend and sometimes just wouldn't. Lately, we've had no problems, in fact, he's initiated bending his wrists, both of them, on his own.

I just love that kid. When I hold him, which is often lately because he's so content being held, and he's having a really good eye contact day, he'll look right into my eyes and it reminds me how very much I love being his mom.

I think this picture really says it all, don't you?

Awww, sleepy baby.

Fun Medical Updates. Hurrah!

We're coming off of about two months of...meh. I can't put my finger on what exactly was the issue but we're finally up and running again, literally and figuratively.

We visited the eye doctor last week. We weren't supposed to follow up until September, which would mark a year since the last eye exam, but with the use of the new seizure medication (Vigabatrin/Sabril), we were required to get a recent eye exam. We were required to do this because one of the possible side effects to using Vigabatrin is tunnel vision or a type of glaucoma. The doctors will use this eye exam to monitor Christian's vision as best they can.

The eye exam went really well. The doctor commented that Christian's vision has improved since September and he was able to track more and had more purposeful looking. The doctor was extremely thorough and explained what the side effects may or may not be with Vigabatrin. He said he learned that those side effects are usually present at the onset of the medication or in the very beginning of use. And there are physical signs like hard eyeballs signifying high amounts of pressure on the eye and runny, red eyes. So far, Christian looks fine.

And, by the way, we increased the Vigabatrin about two weeks ago and all's well. We have had a few episodes at best but no jerks throughout the day. We'll follow up with neurology on Friday.

Speaking of vision stuff, Christian's vision therapist referred our family to a professor at the University of Arizona (Go Cats!) who teaches vision. She's holding a class for her graduate students about vision impairment in children and asked if we'd be willing to come in and help teach students for the day about cortical visual impairment. I thought it was a GREAT idea! Seriously, any opportunity to teach others, especially when it may help other kids in the future, I'm on it!

Well that meeting led to another meeting with another professor at the UofA. I received another call from a professor teaching an introduction to visual impairment class. She asked if I'd like to be on a parent forum sharing our story and allowing students to ask questions about Christian. Again, OF COURSE I'd like to do that. You all know how I love sharing my baby's story!

On the subject of tummies, we had our first appointment with our GI doctor today. With Christian's vomiting, it never occurred to me to visit a GI doctor. I really thought, what could they possibly do to make him stop? You know, cuz I know everything, right? And with the Vigabatrin, which has GREATLY reduced his vomiting, I thought maybe I didn't even really need to go. Again, because I know everything.

Well, I'm so glad we went. We really hit the jackpot of information. Not only is our new GI doctor extremely knowledgeable in what he does but he's also a nutritionist! I've been looking for one because I'm so in the dark about supplements. I mean I've done my research, but I have gotten no useful information from professionals. He's also not a fan of medication if we can help it. He earned more points for that.

Coming up we have a blood workup to test for any deficiencies. I've been wanting to do this forever! He'll also test a few other things like protein and iron. In addition, we're going to do a swallow study. We had started with tasting and were gaining progress but when we started the Vigabatrin, it not only relaxed tone but also his sucking and swallowing. So it's not as strong as it was and I can see that simply by the way his mouth is moving and his drooling.

I still want to get a swallow study because I want to see where he is. I don't want to push anything he's not ready for. Honestly, eating by mouth is not on the top of my list of Things I Want Christian To Do. But I'd like to get a look at where he is with mouth stuff so we know whether we should pursue food by mouth at this time or wait until he's ready.

Hyperbarics is going great! No crying...whoop! whoop! And I love seeing new things when we start up after a break. New things like moving arms, opening hands with a loose thumb, new sounds, new movements. All good stuff.

Oh, and I had mentioned before our trip that Christian wasn't feeling well. The day after I posted it was like nothing had ever happened. So Mama is happy I have a healthy boy.

Thanks for your continued thoughts and prayers! We love and appreciate every single one of them.

...And Back

Guess who's coming off the most awesome-ist trip to the ocean ever?

(Yup, I know awesome-ist is not a word, but I'm making it a word because that's just the kind of mood I'm in.)

That's right...us!

And guess who wanted to stay just one more day...

Yeah, that would be me. (raising hand)

It was so worth it. We could have been really careful or really scared or really cautious about our getaway plans. We could have fretted about how we'd get Christian around in his chair and how we'd get him back and forth through the sand...but we chose otherwise...

...And there were feet in the sand...

...for everyone.

Oh, it was just that kind of trip. Beautiful weather, gorgeous scenery, good friends and family. All the makings of perfect. And the very best part about it is that my kids loved it. And Christian...if I could afford to live on a beach, we'd do it because Christian melted along with the sand and sea.

He felt so relaxed that he decided to turn over from his back to his side all by himself for the first time ever. I guess there are magical powers in that ocean breeze.

There was one point that I took him down to the shore line to put his feet in the ocean, hold him, and use my 4th arm to take pictures at the same time. I finally just thought: Screw it. I'm on the beach with my baby, and we sat down on that wet sandy beach and let the sea tickle our toes. A wet dress and a wet tush never hurt anyone. Luckily, a friend of ours grabbed the camera. Thanks, Kendra!

Remember when Christian didn't like wind or the bright sun? Remember when I would write about him tensing up with the arrival of the first wind gust? None of that for my boy this time around! Hardly a peep from him the entire vacation. He was lulled by the ocean waves and had relaxation in his body that no medication could rival.

We sat on the beach and felt seashells, we ate breakfast by the sea, we watched sunsets and laughed with friends until our stomachs hurt and tears came out of our eyes. It was paradise, I tell you.

And as if I already didn't love Christian's daddy enough, well...yeah...

...no words.

That ocean is a funny thing. It makes you feel so small and it makes your dilemmas feel so insignificant. Looking at that ocean and holding my little man I felt like there was nothing we couldn't overcome. There was nothing that was bigger than the ocean. And just like the ocean, nothing is bigger than God. So I said little prayers into Christian's little ear. What better place to be thankful for your blessings? What better place to talk to God?

And as if this post wasn't long enough, we just can't end it without a picture of little sister, Lola.

Paradise, I tell you.

To The Ocean!

We're going to the ocean. We're going to lay on the sand and soak up the sun with a proper sunblock, of course. The babies will have swimsuits and hats and smell like coconut and sea salt. We'll get henna tattoos and eat dollar tacos by the sea. It will be magical.

I'm even more excited that the babies will be going. The last time we went to this particular place I was pregnant with Christian - seven months to be exact. Manny and I walked on the beach and Manny told me that when Christian was born we'd bring him to that particular beach and put his feet in the sand.

This beach is so very special to us. It's where family has bonfires and lights fireworks. It's where our skin burns no matter how much sunblock we use. It's where Manny and I took our first vacation together. And it's where we honeymooned.

So we're taking our boy back to his beach so he can fittingly put his feet in the sand. He'll need some help. But that's what Mommy and Daddy are here for. I know he'll love it. I know it. Just from his reaction to the beach in San Diego, I know it will be awesome.

I also put him to bed with a recording of ocean waves in his ear. It calms him to dreamyland almost every night.

But, alas, the prince didn't feel so well this morning. He woke up just fine and then threw up. He's hardly been throwing up at all lately, but I still wasn't alarmed. Then he threw up again. Still not a big deal. Except that he started crying. And crying. And sobbing. Like a real little boy sobbing. Tears and swollen eyes and coughing and snorting.

I gave him a bath and a lotion-y massage and it calmed him. He was fine until I moved him to the floor for therapy and he started crying again. He wouldn't let the therapist do anything. Then he wouldn't calm down unless he was held. He was the saddest little thing. He had a nap and hasn't been as upset as he was earlier but he did have a wannabe fever of about 99. I know that's usually nothing, but my flag goes up at 99. I gave him some Tylenol and he's been sleeping it off ever since.

So prayers and good thoughts that he'll be back to normal tomorrow. I do hope he feels better. The beach is waiting for him.

Flying

“When you have come to the edge of all light that you know and are about to drop off into the darkness of the unknown, Faith is knowing one of two things will happen: There will be something solid to stand on or you will be taught to fly.” – Patrick Overton

July 8, 2010 will be a year. Sometimes I think about the details of the events that transpired on that date. A lot of it I don't remember. And then I think...that really happened?

Yeah, it did.

How did we make it out alive?

Blind faith.

I'm not sure how I'll feel on that day. Today looking forward it's a funny feeling of terror and gratefulness, each pulling evenly. See, that was the day my son died in my arms. And that was the day he was given back to me again. It's like his second birthday.

I don't understand why he was given back to me. And it wasn't because a medical team gave him back to me. From the events that occurred, I truly believe it was Divine intervention. I mean he was on his way out, he was gone. They were on their last attempt to bring him back from no pulse and no heartbeat. We were supposed to be saying goodbye. And then he came back as soon as I touched his leg. Just. Like. That.

When I think of this profound moment, I think how amazing it is that Christian is right here with me, right this moment. He is literally an angel sent from heaven.

I don't mean the "Oh, he's such a little angel sent from heaven," type of angel. I mean he's an ANGEL. He died that day. He crossed over. He saw God. And he came back to earth. Not many people on earth have done that. He has love and knowledge and wisdom just from that little trip alone that we don't have. And even though it's all locked up in this little body that doesn't quite know how to move yet, it's there. I'm sure of it. I mean I look at him and I'm overwhelmed by the thought - you, little man, saw God.

I'm not going to sit here and pretend I've had unwavering faith. Let me tell you, to say that my faith has been tested is an understatement. I've never asked why this happened to us. I know why it happened. I failed him.

No, I never asked why. But I asked why he was saved and not other kids that this has happened to. I've wondered why the rate of progress is so very different for kids with the same injury. I've wondered why if God can heal on the spot, why He hasn't chosen that for Christian, when we've already seen His power and what He can do.

Okay, so my faith has been tested. And I'm trying to capture a little of that blind faith I clung to so fervently in the beginning.

It's not of my understanding. My ways are not His ways. And I'm finally getting to realize that maybe just maybe this whole world and the way it rotates is not about me and Christian. There is a bigger plan. There's a bigger plan for Christian that I'm not privy to, I guess.

So it's time for a deep breath. In church today, the pastor spoke about freedom. Which is funny, because that word and that idea has resonated with me in the last few months. The pastor spoke about being free from the strong hold of negative thoughts and negative energies, more or less. He said, no, it is not of our understanding but we're just going to have to...trust.

And I remember in those first days and first weeks after Christian's accident I didn't even listen to the doctors. I didn't even listen. I can't even remember what most of them said if it was negative. I just believed. I believed. I trusted. Blindly. And we made it through.

So it's time to start blocking some of that medical gibberish and paralyzing, deep rooted negativity that seeps into my thoughts. It's time to start getting this blind faith walk on.

It's time to start flying.

Trial and Error

We had quite the morning!

Our whole team came for a visit. This includes Christian's Physical Therapist, Occupational/Feeding Therapist, Vision Therapist, and Early Intervention Coordinator.

It wasn't time for our review of goals and meds and schedules and doctors and stuff that's really kind of monotonous and lacks in productivity on our end, at least.

"The team" got together in one place at one time really just to compare notes and feed off each other. They picked a great day, too, because Christian started out super uncooperative. He was stuck to the left and wasn't budging. I'm sure that was tons of fun for the PT and vision therapist. Christian wasn't really participating and having a hard time bringing his eyes out of their very comfortable position on the left.

Then I finally remembered something I read about another mom patching or covering a strong eye to strengthen the weaker one. So I mentioned it. The PT covered his weaker eye, which is Christian's right. And it worked. He started moving his weaker eye and actually started participating. Then he started moving his head over and out of it's position to the left. The PT switched eyes and Christian started looking to the right, the far right. Finally!  Some participation from this stubborn boy. And you know what...he hasn't stopped looking around since.

Just a few other updates:

I mentioned in my last post about how I wasn't as confident with Vigabatrin as I initially had been. Well, it's because Christian's jerks returned. Not any stronger, but just as frequent as they had been while on Keppra. So that's a bummer. All the great stuff that happened the first week turned back to same old Christian. Which, minus the seizures, isn't that bad. I mean with no tone, he had less movement and awareness. So he's now moving around again and hitting toys. So, of course, Christian is reacting differently than expected. I'm not upset, just puzzled. It is nice to see him moving his arms again so not all bad. I talked to the neuro and he suggested increasing the meds. So we'll try that and see what happens. It's a give and take, always. Trial and error. More drugs, less tone. Less drugs, more tone but more action and awareness. We'll see. You know I'll keep you posted! ;-)

We also started back at HBOT yesterday. And NO CRYING!!!! There were a few whimpers in protest today but they were consolable. That's the difference. A month ago he was crying, inconsolably, through the entire hour and change in that chamber. But now, so far, it's all good! Yay! It's good, no, great news because I really believe it is so beneficial for him.

Hmmm, what else can I tell you...oh yeah, I gave myself a gift for Mother's Day! Take a look! It's just for me and I felt it was becoming more and more necessary for the good of my sanity. It's just in it's baby stages so stay tuned for changes.

And last, but not least....babies in their jammies. Matching pajamas, no less. Oh yeah, I'm that kind of mommy.

Lola showing off her karate chops on her brother.

"Can both of you look at Mommy at the same time, please?"

Nope.

"I'm gonna punch her if you don't stop taking my picture."

The closest I'll get to both of them looking at the camera at the same time. Momentous.

Four Times Over

Today could have been really sad.

It could have been a really awful day for me, Christian's mom.

I could have had to just barely get through this day.

But it wasn't that kind of day because Christian is here. Christian's alive. Sometimes I forget that because he's not the same kind of alive as you and me and my neighbor and my other kids. But he's alive.

Being a mother was the only thing I ever really wanted to do since I was little. Everything else came secondary. Today I'm honored that God would entrust me with three little lives.

One of those lives He entrusted to me twice.

I'm honored to be the mother of these three kids - even though Gabe complained about having to do his own laundry today, Lola screamed in hysterics at my gramma's house during our Mother's Day get together, and I'm not as confident as I was last week in Christian's new medication - I'm so glad I have all three of them to worry and complain about.

Because this day could have been so different.

I'm also just truly blessed to be able to have given birth to these kids. Women struggle every day to just become pregnant, and then stay pregnant, and then safely give birth. And then after giving birth, the trouble and worrying has really only just begun. If I didn't wholly appreciate this day I would be doing a disservice to those who aren't able to celebrate this day...yet. A disservice to those women who do feel pain when Mother's Day arrives.

Okay, so it's a little hard to be thankful and sunshiney with a four month old screaming in your ear. BUT, at the end of this Mother's Day, I'm so very thankful that I get to celebrate Mother's Day three times over!

Actually, four times over. Christian was given to me twice.

This morning I woke up to a breakfast bonanza that my husband and oldest son cooked up. I was met by donuts, banana waffles, fresh berries and a People magazine. I sat surrounded by all my kids and what could be better than that?

A Special Mother

I picked this up in our Cranial Sacral doctor's office. I always get enlightenment there. There's really no need to explain this passage except to say that it so captured me and directly spoke to me and some of my recent struggles.

It is so appropriate for this up coming Mother's Day and I wanted to share it with all mommies, whether they're searching for answers or searching for a sippy cup.

A SPECIAL MOTHER - By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children.




Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.






"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."






"Forrest, Marjorie; daughter. Patron saint, Cecelia."






"Rutledge, Carrie; twins. Patron saint, Matthew."






Finally He passes a name to an angel and smiles, "Give her a handicapped child."






The angel is curious. "Why this one God? She's so happy."






"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."






"But has she patience?" asks the angel.






"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."






"But, Lord, I don't think she even believes in you."






God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness."






The angel gasps - "Selfishness? Is that a virtue?"






God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".






"And what about her Patron saint?" asks the angel, his pen poised in mid-air.






God smiles, "A mirror will suffice."

Happy Mother's Day.

Like Button (Insert "Thumbs Up" Here)

If Vigabatrin had a facebook page, I might consider becoming a fan.

I know for sure I would click the "like" button.

The report on Vigabatrin is...so far, so good. I'll start with the "cons" because that list, so far, is short.

CONS:

Christian is drugged. He doesn't have the glassy eyed, lazy, not doing anything druggyness about him. But there is a difference. Prior to beginning Vigabatrin last Thursday, I had Christian completely off all medications so going back on a high dosage of a very potent drug has definitely changed Christian. I'm not so sure that's a bad thing at this point.

PROS:

Christian's seizure activity has decreased to almost nothing but a few tiny things that are questionable at best. I used to wonder what life would be like when Christian doesn't have anymore jerks. Now I know!

Some other interesting findings - No more throwing up. For the last month or so that has been a huge issue. But hasn't it always been an issue, you ask. Yes, but we have our ups and downs with it, good weeks and bad weeks. We were in a bad month. He was throwing up in the middle of the night, which he hadn't done in a long time, and made several attempts, about half successful, to throw up during the day.

After Vigabatrin was introduced, it was literally night and day. He immediately stopped throwing up, or even attempting it. This leads me to believe that his throwing up is definitely related to his tone, which leads me to my next observation.

Christian is a noodle. He is completely relaxed. Not drugged relaxed, just relaxed. There is gravity, which is hard for Christian to feel since he is always tight. But every part of his body is relaxed, from his back to his extended neck to his stubborn, pointed toes. We can actually properly snuggle him like a baby. His legs can be adducted (spread apart) so completely that I can sit him on my hip while carrying him with his head on my shoulder. There's no more jerking back in extension. It's just a calmness.

He's not crying anymore! I mean he cries if he's upset about something or wants to be held or if he's tired. But no more all day long crying. And his cry is different. There is different pitch and inflection in his cry. It's very interesting. It's no longer just a monotone, but instead, there are highs and lows in his voice.

His body was so different that during therapy his PT couldn't believe it. She said he was like a different kid - especially because he was allowing so much without protest. He tracked his silver pom-pom and made a few attempts to reach up to it. So, although he's a little drugged, he's still alert and moving. He's allowing more things to be done with him. He used to protest and complain from the slightest bit of stretching or moving sometimes. But so far he's been going with it! If his tone continues in relaxation like this, we may need to reconsider even getting any Botox.

We'll see how this plays out. It is new so as his body gets used to it, things could change again.

But, as it stands now, Mama likey.

Looking in the mirror during PT, bending one leg all the way up on the ball. He's not looking at himself here because, if you notice, he's fixed on Spongebob and Patrick on the left.

"Hey, that's me in that dirty mirror that my mom should really clean."

Encounters

Every week we have our share of appointments and outings, as I've explained at length before. Our schedule has changed a lot recently. I've made the choice to shrink our schedule in order to have more down time. I was forced into this new downsized schedule for two reasons. One being that Lola is extremely attached to me and it's difficult to find anyone for her to stay with during appointments because she screams about 20 minutes after I've left and doesn't really let up until I come back. The second reason is that for the last month or so, Christian was just so unhappy. He cried and cried and was uncomfortable and cried some more. It was difficult, to say the least. So we've been keeping close to home as much as possible.

The thing about keeping close to home is that it starts to feel like a dungeon. And it starts to feel depressing. So last week we had some appointments that were one-timers - out of the ordinary. I was driving back home and it was a beautiful day so I stopped at a park by the house.

I had both the babies with me and this is a huge park with a swing set. I've been wanting to take Christian on the swings with me for a while now and I was just waiting for the weather to get better.

Almost out of spite (for whom or what, I don't know), I made a u-turn and headed into the parking lot of the park. I put Christian in his stroller and had Lola in her carrier in the crook of my arm. I was taking my kids to the park, dammit.

I pushed Christian and carried Lola all the way over to the swings. It was a busy day at the park - over 100 kids on some type of field trip. I spotted teachers, mommy helpers, and a bunch of kids running around. It was madness. But, again, out of some sort of defiance I kept pursuing the swings.

And although there were three school buses of kids there, the swings were empty! I tried to make my way over to the swings quickly for fear that the little crazies would steal our opportunity to swing. We only needed one! I put Lola down, grabbed Christian out of his stroller, picked Lola  in her carrier back up and headed over to the swing. Just then one of those kids made a run for our swing. Ahhh! Rats.

So I waited. Luckily kids are fickle so the swing was up for grabs within a minute. I put Lola off to the side so she could watch us and I sat down in the swing with Christian in my lap. And off we went.

Christian likes to swing. I mean I think he does because he relaxes into it. Swinging is actually really good for kids like Christian. So back and forth we went and Lola laughed at us and smiled every time she caught my eye.

"He can't walk?"

I heard a voice to the left of us swinging. She was asking about Christian. I just shook my head and said no. She didn't ask why. She just knew something was different.

Another little girl ran up to us and asked if she could have our swing. It was time to go. We were outnumbered.

We were there for all of 10 minutes and it felt like...school bus hell. That's mellow dramatic. The whole experience just made me sad. Like there wasn't room for us there. Damn Italy.

I had another encounter with a lady who, seeing that something was different with Christian, put down her cell phone, knelt down near Christian and said hello to him with her one year old on her hip. She was very kind and very sweet and extremely sincere. She then asked what I was waiting for...

"What does he have?"

I explained. And with a sad and sorry face she said..."Just keep praying."

Really? That's all I have to do? Is there a number of prayers I have to say? Because I pray each and every single night, I swear I do. If there is a number of times or a number of nights I have to say a prayer, I'll do it. Diligently.

I assured her that I would, very politely. It's not that I thought her intentions were not in the right place. No, it was my head and my heart that weren't in the right place.

It was then that I learned that maybe I was a little bitter. Maybe a little more hurt than I realized. Maybe just a little too cynical.

That was last week. A new week is in front of us and I'm hopeful. We'll be seeing a new GI doctor about feeding stuff and Dr. Peters for Cranial Sacral. Maybe we'll try the park again...

...unless we see a school bus.