See Christian and Lola's ISR video!

Friday, October 30, 2009

Week Made.

I love when new and positive changes happen with Christian. It really makes my day. Actually it makes my week and today my week was made.

Today the new in-home physical therapist visited again and she was awesome! They all bring something to the table and this PT brings like 200 years of experience. Okay...more like 20 or something, but still.

She pushed him harder than I've seen any therapist push him. I'm used to almost everyone treating him with kid gloves and as well they should. But she really pushed him past his limits. And he cried and cried but she pushed and pushed. He really seemed to respond well and do some things I don't think I've seen him do but something in me knew he was capable of doing it.

Christian held his head up while in a kneeling position without much resistance in his legs. He worked hard! It's better to see for yourself!

Photo Sharing - Video Sharing - Photo Printing
Week made.
Thursday, October 29, 2009


Christian doesn't like the cold.

Good thing we live in Arizona.

See, last week we were living in the 90's. Pretty typical for us. Then we got word that...dun, dun, DUN...a cold front was coming in and we were expecting two days, that's right TWO, with temperatures in the 50's and 60's. HOLD THE PHONE! Break out the unnecessary snow boots we wear just for show. Winter's a comin'. Oh, but just for two days. Then we'll be back in the 70-70's by the weekend. Love it.

Christian doesn't care about any of this. He just wants to be warm. When he's cold he whines and cries and stiffens up. He was uncooperative with his OT today, but luckily, if he's swaddled in a blanket, a fleece blanket in particular, he's happy again for the most part.

We're also dipping our toes into home therapy. As I mentioned last week, we visited with the PT last week and she's coming tomorrow again. I hope she's not rushed again. I hope he responds to her. I really want to have some in home therapy set up by the time Lola comes. And because Christian seems to not do well with cold weather, it would be nice to have that all set up for the 1-2 months it's actually cold. Also, it's been harder and harder to carry everything in and out of outpatient therapy. It's not just Christian. I can carry him - that or I'm completely refusing to stop. It's the suction machine, diaper bag, and purse on top of carrying him that is beginning to be a challenge.

And next week we are taking a break from HBOT. We're having our "oxygen break." It's been 20 treatments, we take a break, and then do 20 more and so on and so forth. I'm looking forward to it because our schedule won't be so packed and because they said that during the oxygen break is when things tend to happen. What things? Who knows? All around, I'm looking forward to the break.

Halloween is this weekend! It's a little bittersweet because I can't really take Christian trick or treating. On the other hand, he's not really at the age where it would be fun to do that anyway. So I guess it will just be a picture taking holiday because you know I bought him a costume. He will be...Superman, cape included.
Tuesday, October 27, 2009


Christian and I had a good weekend! We pretty much stuck close to home due to all that H1N1 fun going around. No need to expose Christian to anything he doesn't need. He hasn't been sick yet and I want to keep it that way. There have been two sickies in my household in the last month and I basically quarantined them in bedrooms until they were better. The sick mommy and no sick Christian.

It's been a few weeks since reducing the Baclofen (muscle relaxant). In hindsight, we made the right decision. There has been progress in his attention and in his hands - grabbing and feeling toys and blankets. This is meaningful progress to me because it just seemed a part of him was able to do stuff and wake up a little more. His movement is more deliberate and stronger. So now I'm thinking about when and if to reduce again. I'm really interested in what I've heard about Magnesium as a replacement but not many people know about it and with prescriptions...I don't even know where to start.

Yesterday we had a heck of a time getting to therapy, but our sessions today and yesterday were productive. His OT is noticing better alignment in a sitting position, more trunk support, and when leaned forward in a seated position he can hold his head up for just a few seconds completely in line with his spine. His arms are straight, but mobile, rather than stuck in a posturing position. And he's been whining and crying more. He cries and whines when he's tired, mostly or sometimes he wants to change positions. He whined through church on Sunday, so much so that Daddy had to take him to the lobby. Typical baby.

Speaking of church...the message was so relative to what we've gone through. It was about Psalm 91. I'm in no way well versed in biblical scripture but from what I can gather it's about seeking refuge in God while fighting off the adversary.

No matter what that adversary is - the devil, demonic powers, devilish-demonic doctors? - that when you stand up to the adversary, you have the power because God has your back. I remember being in the hospital that first week with nobody believing in Christian but us. Sometimes I wonder how I ever got through it because when I think about it I felt like I was in a daze, like I was invisible, only relying on God to get us through.

The message in church also said that God doesn't promise us we won't go through tragedy, but he promises we will "get" through tragedy. The pastor also talked about a hiding place, a safe place of refuge when everything is going wrong, you just want to hide and be invisible for a while, and it doesn't have to be in a physical place that you go to. For me it was right there in that hospital room. I was invisible at times, I didn't want to be coddled or visited. I didn't want to be made to understand the severity of the situation. I only wanted to believe he would make it.

This entire sermon was so uplifting and so true to what we went through those awful first days, I was thinking - was the pastor there with us or something? No. But our situation isn't unique - tragedy happens to everyone. In retrospect, there were adversaries that said Christian wouldn't make it, or that his circumstances would be dire. We said NO. And we sought out that hiding place in the shadow of God and He got us through those extremely difficult days. There is NO other explanation.

There was also a message not to be afraid of what's to come. Often I get caught up in the unknown and I get scared of what I don't know. Will Christian ever smile? Will Christian ever walk? Will Christian be okay? But we shouldn't be afraid. We should just be. We should trust that God will take care of things.

Although we are still going through this journey, we are continuing to fight off adversaries that tell us Christian needs this or doesn't need that. To these adversaries we say NO. Of course, we aren't rude, we say thanks but we know what's best for him. There, that's polite. We're relying on God, unafraid, and strengthened by the shear power we've already witnessed.

As it was and how it will the adversaries we say NO. We move forward without fear and with nothing but hope.
Friday, October 23, 2009

Mamas' Boys

The week is finally done and we have two days of relaxation ahead of us. Although, because I'm so used to the schedule and things have started to normalize and calm down around these parts, I'm a tad disappointed that I have no plans for tomorrow. But, it's for the best because I'm trying to limit Christian's and my exposure to flu - swiney or otherwise.

This past week went by so fast! Again, finally normalized. We had great feedback from all of his therapists and he had a good "seeing" week. Sometimes I would approach him and he'd look around the room as if seeing things for the first time. I'd say his name, he'd look at me, but then look around again like he didn't want to miss anything. It was so small but so overwhelming to watch him do this. I can only assume that maybe something in his brain switched on and is literally processing the information as if it were the first time ever. When he does this it looks like he's so interested in his surroundings and I don't want to disturb it but at the same time I get so excited when he responds by looking at toys and following me. Half of me wants to let him be so he can process and half of me wants to soak up all this "on" time he's giving me. We do a little of both.

Christian's progress with grabbing and feeling his toys and stuffed animals has been so great. He is really grabbing for things when led by his elbows. We push his elbows toward a toy and he does the rest by opening his hand, feeling, and grabbing if he chooses. He did that today with something new...mardigras necklaces. (Don't get any ideas, Christian!) He loved the feel of them being draped over this hands and through his hands and as I pulled them through his hands, he'd sometimes grab them and sometimes just feel with his fingers outstretched. I could watch it forever.

There's also another toy that we tried in PT today and I didn't really think he'd latch on to it. But he actually liked it and responded well. So guess what Mama did...ran to the nearest Target and bought it. And he liked it just as much at home. The best thing about this toy is that he not only uses his sense of touch but he will actually look at this toy while touching it. Wow! Little, tiny progresses that make my day.

We also met with a new PT that will possibly be doing our in-home visits. She was really down to earth, if not a bit rushed. She scooped Christian up, put him on her lap, bent his knees, held him in a sitting position, and treated him as if he were just regular little boy that needed help. I wasn't exactly blown away by her, but I could tell I could grow to really like her. She explained that Early Intervention comes from a different philosophy - visit once a week with therapy, teach exercises to the family, and incorporate these exercises into every day activity, like changing diaper, feeding time, etc. She explained that Christian is on a hospital/medical model path - intensive therapy 3-5 times a week. Now, I don't know if this is what they are taught to say but she, like me, questions why we can't do both! Why not? The more the better for Christian. And when the baby comes, it will be particularly helpful to have in-home therapy in place for the period of time that I can't take him to the outpatient therapies. So we'll see how this develops.

As for trach news, I've not been as aggressive with capping and so forth just because we've been focusing on other things. I also had reservations about getting the trach out during cold and flu season. Christian hasn't been sick yet since the accident. So I don't know what to expect and to be honest, having that trach feels like a back up to make it that much easier to breath should he catch anything involving his respiratory system. We are literally down to 1-3 times a day suctioning and that's only after vomiting, and half the time mostly through his nose and not even his trach! The therapist passed along that the pediatric pulmonology group in Tucson won't even entertain removal of a trach until after cold and flu season is through, whether a child can fly without it or not.

I'm okay with this. I actually feel less pressure and like we can take our time with capping. So that in the spring, he will be 110% ready.

Poor Christian is getting molars. Booo! He was cranky tonight, drooled all over the place, and cried for what I believe is the first time with actual tears. But, it wasn't anything a little Infant Tylenol couldn't take care of and now he's fast asleep.

My husband calls him a Mama's Boy because he calms down with me. Both my boys are Mamas' Boys, although, don't say anything to Gabe about this because he'll deny it emphatically.

I love my Mamas' Boys.
Wednesday, October 21, 2009

Touchy, Feely

We are finally down to a good, predictable schedule! We know our therapists, we know our doctors and I finally feel comfortable with the way things are going right now.

Christian met with his physical and speech therapist today for the first time in about 2-3 weeks due to a mixture of cancellations on my part and vacations on there's. Christian was being pretty uncooperative with them, it seemed. He wasn't really feeling them, which by comparison with his OT, is pretty common. So I didn't expect them to say anything about progress, especially with his little attitude. But they said he had come really far in 2 weeks!

1. I'm so excited my son shows a preference toward people and has an "attitude."

2. I'm also excited that even with his attitude of uncooperativeness (is that even a word?), they still noticed a difference.

This is so reassuring, especially after my whole grass growing thing. Sorry, I was having a weekend and sometimes I loose focus.

Yesterday the OT put a piano with lights and song in front of Christian in the seated position and led his arms to the piano to see what he would do. Well he started moving his fingers and grabbed some of the figurines attached to the piano. He was also in a "feely" mood while working with the therapists today. I love this! He really likes to feel soft stuffed animals (we got a lot of those while in the hospital so now they are particularly handy!) and he's starting to dig pianos. I think it's because they're easy to manipulate and he's getting that cause and effect feed back.

Tomorrow we meet a potential in home therapist. She will come to our house to work with Christian weekly. Again, these first meeting aren't fun because these new people don't know Christian and don't know how far he's come. So what they see the first time is, to them, his baseline. So tomorrow...we'll see how it goes.

Today, and for a few days now, Christian's been "paying attention." The eye doctor told us that with Cortical Visual Impairment (CVI), some days Christian will stare off into space and others he will seem like he's following you all over the place. As the brain heals, this is normal. I see this. Today was an "on" day. I jiggled toys in front of him and he looked over. He's responding to sound, too, by blinking his eyes if there's a loud and sudden sound. He's still a big cry baby, but I believe I've heard some vocalizing that isn't crying.

And did I mention I love his HBOT/neuro office? I suspected a blood clot in my leg yesterday (don't worry, it was negative) and was in the hospital to check it out. The office actually called at the end of the day to make sure I was okay. So sweet! I feel like they're family now because I see them every single day! And they really want Christian to get better. This is who I need surrounding us - people who believe Christian will get better and continue to improve.

BONUS: Northstar HBOT is continuing to bill my insurance and insurance is continuing to pay!!! This means we now have a credit at Northstar for even more treatments! This is like a....precedent. This really does not happen, but it's happening for Christian.

I can't thank you guys enough for continuing to pray for Christian and our family. Your prayers are working, I swear! God is at work!
Monday, October 19, 2009

Growing Grass

"...It's a little like watching grass grow." - Makenzie's Mom.

I really couldn't have said it any better myself.

Day in and day out, sometimes I can see bursts of progress and account for every tiny leap Christian makes. And's difficult. I don't know if it's fatigue from trying to look for any progress made in a day or if it's constantly reciting what progresses Christian has made and getting tired of hearing myself. That combined with the look of confusion on people's faces or in the sound of their voice as I recite Christian's process and lack of understanding that - yes, opening his left hand and feeling for something is a huge accomplishment. What people want to hear is, "Christian jumped off the couch today and ran over to watch Spongebob!" Trust me, I want to say this, and when it happens I will recite it over and over again to whoever will listen. The day will happen but that day isn't today. So for now, I'm watching the grass grow.

It wasn't a stellar weekend. Unproductive and uneventful I would say. Christian was seriously irritable yesterday. Not completely sure why but my guess is that a big, fat molar is pushing it's way through his little gums. Not nice. But it was nothing Tylenol couldn't handle. I put his Converse shoes on for the first time in a while and he absolutely hated them. In fact, he was so frustrated that he cried the entire time and even lifted his leg from his hip a few times. We took the shoes off and all was right with the world again.

But today, Christian was refreshed and ready to go. He was looking around and focusing a little and I swear he was following me a few times. OT told me his team of therapists met and were really excited about the progress he's making. That was nice to hear, especially with the way I was feeling over the weekend. I did get some good, albeit difficult shots of Christian attempting to hold up his head...

Christian on Friday night trying to hold up his head.

We like this because it's an actual attempt to stabilize his head rather than throw it back in an arch. He is face down on my chest in this picture which makes it a little easier to try to hold his head up.

The OT also suggested introducing different stuffed animals that are big enough so that he can try to feel them with both arms/hands at the same time. I introduced him to a character from a Dr. Seuss book and this is what happened...

A love affair has emerged.

I didn't set this up, I swear. I simply put the stuffed animal over his right arm. I showed him with his left arm where it was and he did the rest. He began on his back and ended up like this on his own. He's even getting oral stimulation. I think he's in love. He fell asleep like this not 10 minutes later.

And, finally, this is Daddy pretending to sleep like Christian. No, he wasn't asleep but I thought it was a cute picture.

So after a weekend of wondering what was really going on with Christian, it hit me this morning. It's a pattern after we see Dr. Peters, the cranial sacral doctor. Every time Christian sees him, he's irritable and downright uncooperative for a few days and then, BAM!, progress again. Dr. Peters told me last visit, "There will be a time when you don't have to come here anymore." It actually made me want to cry. Really? There might be a time we aren't looking for something...anything that will help him? I felt peaceful about this. But after having three visits and seeing progress after each one, I'm thinking we'll go back for a fourth just for good measure and just based on what I've seen so far.
Slow....quick, quick....slow. Yet another analogy that describes Christian's progress. It's all amazing and frustrating at the same time. I never imagined I'd get so much joy out of such small victories. Actually laugh out loud joy. But when my boy is crying and I pick him up and pat his back and he's okay again or when he feels for my hand when I ticked his fingers, I believe this is the most beautiful, growing grass I've ever had the pleasure of watching.

Thursday, October 15, 2009

Backing off the Baclofen

This week is almost over and I haven't even updated!

I think it's because I've told the story over and over again so I'm sick of myself telling it at this point, but it is an important update.

Last weekend the pharmacy royally screwed up Christian's meds. This particular pharmacy (where I won't name names but it rhymes with Balbreens) has never given me a problem. Ever. Recently they've gone to a call center system where you aren't actually talking to a pharmacist in the store. It's all an answering service.

I'll try and make this pediatrician called in Christian's prescriptions, it never was entered so no renewed prescriptions for Christian. By the time I figured this out, we had nothing left. We got one emergency prescription for one med but they refused an emergency scrip for the other. It's Baclofen. This is a heavy muscle relaxant. He's been on it since the hospital because of the tightness of his body, also referred to as tone.

After hassle after hassle, three wasted trips to the said store in question, a changed prescription, changing pharmacies, and 36 hours off the drug, we finally got him back on Baclofen.

The part that pissed me off was that the pharmacy in question was so difficult to deal with even knowing the situation. Even knowing my pediatrician called in. With Baclofen you can't go cold turkey because it's addictive. So there could be real withdrawal side effects including seizures. It was getting kind of serious and when I was told the prescription would be ready, I show up, and the pharmacy tech said it would be another 48 hours to compound! I said, "No. You don't understand, he can't go anymore time without a dose." And they really didn't care. They told me my pediatrician could call in another scrip. Just like last time, right? I was done.

I changed pharmacies and was able to get the prescription within 2 hours. Why was that so hard for the other pharmacy?

Anyway, even though the whole situation was frustrating, it was kind of a blessing in disguise. I saw Christian without Baclofen and he was...different. His movements were more deliberate, his neck was stronger, his arms moved more, and he was more present. In other words, not so drugged. But I knew he had to go back on it or there might be serious drawbacks. So we put him on his regular dosage for a few days and now we're reducing it, observing, reducing, observing, until hopefully one day he'll be off.

After this ordeal and doing more research I found that Baclofen actually lowers the threshold for seizures, especially in children with brain injury.

Not everyone will be supportive of this but I really don't care. I know my child. I know what he needs and if he needs more, I'll give him more. If we can do less, that's where we're going. When I told one of my OT's today she looked a little worried but we're not reducing drastically...right now. And we have the blessing of our neuro.

We also had our 3rd cranial sacral appointment today. It was intense for Christian. He cried...hard. But, honestly, it was the weirdest thing. He cried and cried, Dr. Peters must have hit something, and then he stopped. I carried Christian out to the car where he almost fell asleep in my arms. He slept a good while and when he woke up, he was...again, different. He was bending his knees with no effort, he was looking around instead of staring off to the right. It was like something gave way in him. Something switched on. I don't know if it was the cranial sacral, the reduction of Baclofen, hyperbarics, or the combination of all three. But we had OT afterward and the OT was so excited about his knees being able to make 90 degree angles. This morning and for the past few day or so I've had a hard time getting his legs to bend at all.

It's a funny thing when new developments happen or things like medication mix ups occur. All of the sudden capping trials and trach removal have become less important at the present time because I'm now on this "Let's get rid of Baclofen" mission. But I have to get back on track - I need to be more aggressive with splinting and capping. Splinting is sometimes hard because when he has PT/OT, they ask to take off the splints anyway so they can work with his hands and feet. So I've gotten in the habit of not putting them on in the first place. And then all of the sudden our day is done and he hasn't worn any splints. Bad. Bad. Bad.

And capping is not something we can just do. I can't just put a cap on his trach and go on about our day because his breathing has to be observed and carefully monitored so I know if he's in distress. And it's hard to find an hour or two out of the day where we aren't doing something.

I have to get it together and do these things for him because it's really important, especially the splinting.

And to ALL of you that prayed for Christian's cry a while back...boy, did those prayers work. I think he cries for every prayer sent because this boy cries all the time! How amazing the power of prayer! And now we pray for smiles. :)

Speaking of prayer, at church on Sunday a woman came over to meet Christian that had led a prayer circle for Christian while he was in the hospital those first few days. It was the first time she met him and she was overcome with emotion looking at this face that she had prayed for. She didn't know English very fluently but she put her hand on Christian's chest and said, "I just...feel...peace."
Sunday, October 11, 2009

Making Memories

We have a tradition. Every fall we go to a little town called Willcox. It's about an hour away and they have a pumpkin patch and an apple orchard. Can we go to a pumpkin patch (more like a stand in our town) and choose pumpkins? Sure. Can we buy apples at the store? Regularly. But this is a tradition for us and it's one of the things we look forward to doing every October.

Gabe and his pumpkin.

I was so excited to go this weekend. We usually will eat a really early breakfast at IHOP (Yay for blueberry pancakes!), then we head off to the pumpkin patch first where they have the best pumpkins - small, big, freakishly big, green, sage colored, orange, and white pumpkins. They also have produce you can pick or buy there and a huge field of sunflowers. Oh, and I forgot, a corn maze that's really frustrating, but Manny can navigate the hardest trail in 15 minutes flat. Me, not so much.

Manny and Gabe after they conquered the corn maze.

Lost in the pumpkin patch. Apparently I didn't get the memo that you are supposed to wear orange to the pumpkin patch because everyone else there did. But I look like I'm trying to steel a pumpkin under my shirt so that counts, right?

Then we head off to Apple Annie's Orchard where we "pick apples." I quote that because the past two years we have been too tired by that time to actually pick the apples. So we just buy 'em. The best part about the orchard is that they have a country store where they sell fresh apple pies, apple jellies, apple this and apple that. But they also sell my favorite...homemade apple crumb pie ice cream. Seriously, they slow churn it right there with an old fashioned ice cream maker. It takes 45 minutes for a batch of pumpkin or apple pie ice cream but last year they finally got with the program and started deep freezing pints of ice cream to go. Genius.
My whole point in describing this is that I was set out and determined to make new memories. We took Christian last year for his first time. And I almost felt compelled to go again in spite of what has happened. This is who Christian is now and this is who we are. Things have changed but things are still the same, too. We are the same people who like a good party, watch our TV shows, and love a good fall trip to Willcox. Things are different, but certainly not dead. This family is alive and I guess what I'm trying to say is that we are creating new memories almost to say - TAKE THAT! to our life's recent circumstances. We won't be beaten...Christian won't be beaten. This is our family. He's our baby who we're going to love and squeeze and expose to whatever we would have exposed him to before (except for germies and H1N1).
It was a good trip. I was excited to take my boys. It was perfect weather - not hot, not cold - and a little cloudy. It really couldn't have been a more perfect day.

So just for comparison's sake...

Last year, Christian was 3 months old and just way too impressed with his pumpkin.

This year, Christian is 14 months, and the pumpkin still isn't that impressive.

Me with the boys last year.

Me with the boys this year.

Christian and I last year. Christian was mad he had to take more pictures.

This year, again, pissed he has to take a picture with Mom.

So as you can see...things are different. But a lot of things are still the same!

And just because I promised...angry face picture after church today.

Wednesday, October 7, 2009


Time for updates!
Someone commented that they'd like to see some recent pics of Christian. You read my mind but...
I'm sure you all remember I have PDD (Photography Deficit Disorder). And, naturally, with this disorder, I have not been keeping up on my picture taking duties. Now that I look back at some of the pictures I've taken in the last few weeks...well, there aren't many! I'm so ashamed. I will take more, I promise.

Here's what I have...

Christian in his crib, wondering...

...wondering why the flash is so bright.

Gymnastic Hands!
Christian's right hand is almost completely open and feeling and touching and grabbing. His OT calls it his "doing hand."

"I found my's so soft."

Gabe, Christian, and Krystal
The picture above is very meaningful. This is the first time Gabe held Christian since his accident. He's had other chances, but he was nervous because he said he hadn't held Christian since he pulled him out of the pool. He finally felt confident enough to hold him, but we didn't make a big deal out of it. It's kind of a silent recognition for me.

This picture is a big deal because after Christian's cranial sacral session last week, his head was turned to the right and he would not move it. It was as if it caused him pain. But for the last two days he's been moving it himself. This is him looking to the left, out the window of the car like it's no big deal.

This is my wishful thinking picture that this maybe, possibly, could be the beginning of a smile. I was singing to him a song I made up for him when he was born. And then he started looking at me, breathing a little faster and something lit up in his eyes. I thought I might just have a smile so I took a picture to see if it was in my head. Who knows, but I know he'll get there someday.

More pictures soon to come. I want to get more of his facial expressions. So you'll mostly just see his angry face. But that's good enough for me!

Monday, October 5, 2009

EEG Results

So I was wondering why I am so tired and exhausted, as I often do when I feel that way. And I thought - Oh, yeah! It's because I'm in my 3rd and final trimester and I have a 14 month old. Duh! (No, I'm not forgetting about Gabe. But he doesn't wear me out.)

Does my 14 month old run around and get into things? No. But I'm running him around to different therapies and appointments. Does my 14 month old make a mess getting food everywhere? No. But it's equally messy when he throws up. Does my 14 month old scream at the top of his lungs? No. But he lets me know when he's pissed by crying and whining. So, all equals out in the end. And the sum of it all is one exhausted Mama Bear!

Today was good, though. Another great OT appointment with our favorite OT. Just since last Tuesday, she's noticed changes in him. She studies him so much and I love watching her watch him because she teaches me things I didn't know about my son.

Christian also got his first hard chamber HBOT treatment in about a month! And while I was there I had his EEG read (for the first time, apparently). Dr. Henrick, his new neuro, sat down and explained to me what it all meant. Here's my best recollection in extremely broken lay men's terms...

Christian's EEG shows spikes. Traditional seizures show a spike, flatten for the length of the seizure, and then the wave plummets. To my understanding, it sounds like a plateau. She said his spikes don't have this. They don't have a duration or a pattern so they aren't really consistent with seizures. She said it's abnormal activity, but that's to be expected in anyone who suffered brain injury or any sort of trauma to the brain. She also said that's the same reason it's an environment for seizures to occur. But she's not convinced that's what's going on.

Dr. Henricks also commented that she didn't think the suspect behavior (the eye rolling) was a seizure after observing it. She said it looked like a lack of coordination in the senses. I asked her about increasing the meds like it was suggested by Dr. G. She said she'd be comfortable with that because the oxygen during HBOT speeds up the metabolism, thus metabolizing the medicine faster. So if we increased the Keppra, it would actually be like giving him the same dosage because of the metabolizing factor of the HBOT treatments. But she said it was up to me. She said she's not concerned about the activity on the EEG. I could hold off on increasing the meds and see what his brain does during recovery or I could increase it now. She's fine with either way. So I think the final verdict is that I'm going to wait to increase. If anything that looks peculiar in his behavior resembles seizures, I'll increase as directed.

Something else she said kind of made my day. But when I repeated it to people afterward, it didn't seem as big of a deal to them. Dr. Henricks told me that while there is abnormal brain waves, there are also normal brain waves and normal brain activity and in her words this is "hopeful." I'm sorry...did she say "normal?" To me, this is such good news. I had prepared myself to hear that the EEG showed completely abnormal brain waves and that was it. I did NOT expect to hear anything about being "normal" unless it was to explain that he was far from it. This is so profound to me because the night he was brought in, his EEG showed almost flat brain waves. 12 hours later, there was activity all over the place, still classified as extremely abnormal by Dr. G. So to hear that an EEG showed anything resembling "normal" waves is such a moving moment for me. And I don't really care if it's just one single normal brain wave - which isn't the case - it's still a miracle to me. It means my baby's brain is HEALING.

I believe there is more of this healing to come. He has weeks where it's hard to pinpoint any improvement and then he has weeks where I can't stop counting the new things he's doing. For example, the manager of the HBOT center met Christian about 3 weeks ago and shook his keys in front of him to get his attention. Christian just stared off and didn't react. But he shook his keys at him today right out of the chamber and Christian responded immediately. He's trying to lift his head a lot, so much that he throws his head back, catches it, and starts crying because he probably hurt himself. I swear it's like having a newborn! His right hand is completely open and reaching and grabbing and his left hand is starting to loosen and open up. He just seems like a whole new man this week!

The other great thing is that Dr. Henrick will do a repeat EEG in 6 months to measure progress. She's in the middle of completing studies on HBOT effects on veterans and she explained things that made it seem that she likes to set precedent. Especially if it changes how the medical and insurance world sees HBOT. She's hoping that with her current study, she will be able to prove progress due to oxygen therapy, making it more likely to be funded by insurance. Go Dr. Henrick! She also made sure to track us down before we left just to see how Christian was after his session and to say goodbye.

God has put opportunities and people into our lives on purpose. And it's so evident when you choose to see it. Sometimes I want to laugh because there are so many signs that God has His hand on Christian. I mean we needed more oxygen therapy and we have what we need. People made it possible for us to have an HBOT chamber at home in a matter of about 2 months. And in a matter of weeks we were able to get more hard chamber treatments. God knows what Christian needs.

In church on Sunday, the pastor talked about abiding. He said the apple tree doesn't work to produce fruit, it just "abides," and, in turn, produces apples. It lets God work through it in order to produce fruit. I know that as long as I listen, I will hear God. And that there's no need to stress or push, we just need to abide and watch what happens.
Saturday, October 3, 2009


Guess who's successfully being capped right now and is maintaining his O2 levels at 96-98%...CHRISTIAN!

We downsized the trach when we finally got the right size in (3.5, he was at a 4.0). And I have to tell you, his breathing with the valve, his breathing in general, has been so much less work for him. He's never really had a problem with breathing but when he'd get stressed or in certain positions, sometimes pressure would build up and he wasn't comfortable breathing. So capping didn't go all that great when we first started. Basically this is because the trach took up almost his entire airway. It's like a straw. And when you "cap" that straw, all you have left to breath is the room around that straw. So, of course, he had a hard time, initially.

Well, we've since downsized the trach so there is more room around that straw for him to utilize his airway. He is doing great! In fact he's so relaxed he fell asleep in his swing....capped! Breathing 100% on his own! And his sats are stable! "Sats" is lingo for oxygen saturation and we also measure heart rate along with it to make sure everything is kosher. A little machine called a pulse ox machine does this for us by taking his pulse on his toe. Just thought I'd give a little explanation to the civilians. I would never have understood this paragraph a year ago!

We had a very busy week! We had some type of therapy every day, sometimes twice. We've also been trying this thing they call a "schedule." It's really essential, honestly. I've also more strictly scheduled Christian's feedings and shrunk them to half a feed at half an hour at a time. Of course, I have to do this more times a day. BUT, it seems to be working...kind of. I'm able to get more into him. He still throws up, but not after every feed and when he throws up it's minimal because he didn't have as much food. So I don't feel like I'm swimming in vomit. It's working for now.

Another part of the schedule and eating is that he has to have his last feed of the day at 8PM so he can do hyperbarics with Daddy at 9PM, which lasts until 10PM. Then I only have an hour with him. My point is that between all the appointments, therapies, naps, feedings, and scheduling, I don't feel like we had too much Mommy and Christian time. So yesterday I cancelled his 8AM physical therapy (due to scheduling conflicts, as well, and to tell you the truth, I don't even think Christian likes the PT). I gave him the exact same thing she would have and we just hung out, just the two of us.

And, shhhhh, don't tell his speech therapist but I gave him some orange. Not like a big chunk into his mouth or anything! I just held it up to his lips and let him suck on it. He responded a little by sucking and swallowing and his little tongue came out to "taste." This is good!

More adventures in Early Intervention...

So my "worker" calls me last week and says I need scripts from Christian's pediatrician for therapy. The ped sent over scripts for 3-5 days a week for PT, OT, and speech and the EI lady already has an assessment from OT that states a need for 3-5 days a week.

She calls me yesterday...

"Yeah...uh...I thought we agreed on 1 day a week for each therapy." - EI lady

"NO, you told me you could only provide 1 day a week for therapy and that was the only option you gave me." - Mama Bear.

"Well, your doctor sent over a script for 3-5 days and that's not what we agreed upon. I need him to rewrite the script for 1 day a week." - EI lady who's pissing me off now.

"I just want to make sure you're not trying to give my son as little therapy as possible." - Mama Bear, starting to get feisty.

"We just need it to say 1 day a week so we can start the therapy at home. Once the therapies are started and he's been evaluated by the therapists, they will evaluate whether he needs more or less." - EI lady starting to sound fishy.

When all is said and done it's not worth the fight for me because I've said it before and I'll say it again - whatever she doesn't provide, he will get elsewhere. That's the bottom line. But this seems shifty to me. Christian's ped and the OT assessment say he NEEDS 3-5 days a week of PT, OT, and Speech. So she wants to call the doctor and have him change the script, thus changing his "need?" Manny had a good point saying you wouldn't do that with a medication. You give what they need! And she wants to have him reassessed by one of her peeps so that they can put on his evaluation 1 day a week per therapy.

This all smells fishy. I'm calling her and may even talk to her supervisor because this just doesn't seem how a government funded agency should operate. I mean aren't you kind of lying if you restate a script to suit the agenda of someone else?

Monday also starts more hyperbarics! That's two sessions a day - one in the hard chamber and one in the soft! So next week will be cra-za-zy.

And Christian's oxygen saturation is still at 98%...capped.

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