See Christian and Lola's ISR video!

Tuesday, September 29, 2009


Deja Vu.

Twists and Turns.

Yay! Ohhh. :( Grrr! Yipee!

This was my day. It was full of ups and downs again! Let's start with the beginning.

8AM - Another great therapy session for which I was late for! Christian always, always, almost always throws up as soon as we are about to walk out the door in the morning. It never fails. Happened again today. But when we got there he did really well again! The OT gave him "inputs" for which he responded to by moving his leg over by himself while turning from side to side. He also slightly bent his knee and flexed his foot during the rolling exercises. She said at the end of the session that she certainly didn't think he would be responding so much this quickly. Go Christian!

930AM - Received the call from the neuro's nurse. This is how it went...

"The doctor said it looks like seizures. So he wants you to increase his meds from 1mg to 1.3mg. If it doesn't go away in a week increase to 1.5mg." - nurse

"Did he say anything else about the EEG?" - Mama Bear

"No, uh, actually he didn't have time to read it. He just glanced at it." - nurse

"Well, does he know what kind of seizures they are?" - Mama Bear, confused as to why the EEG hasn't been read.

"Would you like me to ask him and call you back?" - nurse

Uh, yeah.

Unacceptable. You didn't read the EEG, but you feel comfortable increasing a dosage on a medication (Keppra) that's side effect could be to cause more seizures??? Irresponsible. I am NOT one of those parents that blindly follows orders without understanding what I'm giving my child and why. And you don't even know what kind of seizures they are? How do you know if he is being treated with the right medication? I'm not asking for much. I just want someone to go over the EEG and show me where it shows seizure activity and what could possibly set it off. It's not that Dr. G doesn't know. It's that he's too busy to read the EEG or even call me to go over it with me or answer my questions. How do I know this, because he told me he was too busy yesterday. In the words of Nanny Joe (Super Nanny), "THIS IS UNACCEPTABLE!"

I was at first devastated. Again, wind out of sale. But then I called the neuro that runs the HBOT place, they questioned the same thing - "He didn't read the EEG? He just glanced at it?" They said, "Have them burn it on a CD and send it over. We'll read it and go over it with you. If they don't give it to you, we'll do another EEG here." Acceptable.

I'm not in denial. I'm not trying to avoid hearing a diagnosis. I simply need an explanation before I pump more meds into a little brain that is still trying to heal. I need to understand. He does get paid by my insurance company, right? Then there's really no excuse for this kind of behavior. I'm so glad I have the HBOT center. And Dr. G's office will burn a CD of the EEG for me. The nurse asked, " get a second opinion?" Uh, yeah, that pretty much sums it up.

1000AM - Cranial Sacral/Osteopathy work with Dr. Christian Peters. Awesome name. And he's actually a Christian. He even prayed with me over [my] Christian before he started the session. He's a doctor of osteopathic medicine and he is always so calm and Christian seems to really respond to him. His behavior tends to change after his treatment (this is his 2nd visit). Christian goes back in 2 weeks and I will blog about any changes he's made after his 3rd session.

I discussed the neuro appointment with Dr. Peters. He explained that there may be answers I want and may not get and to just take what I can from neuro, build my team of trusted medical professionals, and move along. On my way out I picked up a little blue slip of paper with a bible verse on it that was on the secretary's desk and put it in my purse.

I felt defeated by the neuro call, I admit. I felt a little lost and like I couldn't find God at that moment. I pulled out the blue slip of paper from my purse and read:

Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand. Isaiah 41:10

God has a funny way of surfacing when you need Him most. This was just what I needed and at the perfect time.

3:30PM - A letter comes. It's from our insurance company....and it's a reimbursement check for the hyperbaric treatments we did in Phoenix that we paid for from donations (THANK YOU!) and out of pocket. And this reimbursement check is enough to bring us to the $5000 we need to start more HBOT treatments. It is almost unheard of (although, this is changing) for an insurance company to pay for HBOT. This is a true miracle. And in just two weeks, we have been able to secure funding. Now we can do one hard session a day and one session a day at home, giving him two sessions a day, which is ideal. I don't know if they'll reimburse again, but this is exactly what we needed and when we needed it.

God. Is. Good.
Monday, September 28, 2009

Adventures in Neurology

I'm not a big Rocky fan but I saw this shirt in Christian's size and the theme song immediately started playing in my head as I thought of Christian. He had to have it!

Do you ever have one of those days that is full of twists and turns? Do you ever have one of those days that is so full of information overload, if feels like you just got through a week instead of a day? Today was one of those day.
8AM: Christian had his OT appointment with our new favorite OT lady. This is therapy session #3. She said he made so much progress in just three sessions. I think he was showing off for her a little today. She also said something about flush redness around the head and neck and how that symbolizes vaso-something. This indicates there are messages being sent from the brain, whether they're "appropriate" message, we don't know, but things are on the move in that brain of his (I really sound intelligent explaining this, don't I?). She also showed me some cues she gives his body while moving him into different positions and he was taking those cues and moving accordingly. She made a point to tell me to tell his neurologist she's noticed decreased tone and increased active movement and relaxation in just his three appointments.

Speaking of comes the sort of sucky part. Ever since Christian gained eye control and eye movement he's done something where his eyes will shake or bounce off to the right and his head will follow. It sort of looks like a cross between turning to look at someone and rolling his eyes. He even does it when I talk to him on his right side. He'll do the eye bouncing thing and then try to focus on me. The OT remarked that we may want to get that checked with neuro because it could be seizure activity. Boy, did that take the wind out of my sail. I was so hoping to skip the world of seizures. So I promptly got on the phone with the neuro center in Tucson and I was able to get in today at 1:20PM.

1:20PM - Welcome to my favorite place...the Center for Neurology. Ugh. This center is filled with all of the high spirited and optimistic neurologists we encountered while in our first days in the PICU. And if you read my blog, you'll know I'm being a tad sarcastic. And who is the quickest I can get an appointment with...Dr. G...also lovingly nicknamed by yours truly as Dr. Death. He was the one that asked us to think about whether we wanted to resuscitate Christian should his perfectly good heart fail. He was the one who delivered every possible worse case scenario there was. He is the one who has never been satisfied with Christian's progress. It's always been, "Well, he's doing this but he's not doing this," over and over again. But he is also the only one that could see us as soon as possible. Fine.

He looked at Christian and said, "Last time I saw you, you were in the hospital and you were very, very sick." Because I have to grasp at any comments from this guy that have a glimmer of positivity to them, I take this as positive. I know, I'm reaching. Long story short, he mentioned that he didn't believe what Christian was doing was seizure activity. But to make absolutely certain, we should run an EEG and he had room for us to do it today. Oh, but the techs can't tell me anything. The doctor has to read the results and get back to me when he has the time. Great. Harassment of Dr. G starts tomorrow at 0800 hours.

Dr. G also said he wanted to discuss Christian's tone and that maybe we aren't doing enough to combat this. Um, thanks but no thanks. If he wants to prescribe a higher dosage of meds or a different med, go right ahead. But I'm not giving it to Christian, not yet. Sorry. He's been on the same dosage since leaving the PICU and his tone has improved without adjustment to meds. There has been no where near enough time to even allow his brain and body to heal. There has been no where near enough therapy or oxygen treatments to begin doping Christian up. Talk to me in another 9-12 months. Then we can assess his meds.

2:00PM - Waited in the children's waiting room. I walked in and a lady recognized Christian and my big belly and said Christian's name out loud! Turns out she follows the blog. Small world!

2:30PM - EEG time. Christian was swaddled, very comfortably and lovingly, by a really sweet lady. And I'm not being sarcastic. She loved children and she hummed little songs the whole time. I literally felt my eyes get heavy listening to her. It was 30 minutes and I got no hints at anything...nothing. The closest I got was when she came in to hold his eyes shut. He was awake the whole time and I asked why she was trying to get him to close his eyes. She said because when we're awake with our eyes open there's plenty of brain activity, but when the eyes are closed, the brain goes into relaxation and they can pick up other things. So does this mean Christian was having a lot of brain activity? Am I reaching again? I have to! These people talk in code!
I fully expect for Dr. G to tell me the brain activity is abnormal again. Just because he doesn't really look at anything positive. So I'm only expecting to hear negative. And besides, if he had a normal EEG, he'd be "normal." I'm not setting myself up for disappointment. I do want to hear that it's NOT seizures. So I'm praying for that conversation.

Christian getting hooked up to EEG electrodes.

In the dark wondering what the heck is going on and why he has a towel on his head.

4:00PM - Finally home. But I left a message for the HBOT company checking in with them and letting them know we fully intend to start treatments as soon as we are done gathering the funds. But that they should hear back from us by October to begin treatments (fingers crossed!). I heard back from them and they said they can't wait to treat Christian. I said that I was a little over half way there for the total amount due ($5000). The manager said that was fine, he can take half now and half at the half way point (20 sessions). Know what that means?!?!?! He can start as soon as Monday in the hard chamber!!! If it is right, God will make a way and He has.

Dear God,
Please clear Christian's brain of any seizure activity. Please allow his little brain to heal without disruption or setback.
Thank you for this little miracle.

Sunday, September 27, 2009

Progress? Yes, progress.

We went to church today. But it wasn't without frustration. Christian threw up 3 times in the morning and I thought for sure it was out of his system. Nope. He was all dressed for church, ten minutes down the street and he and his carseat are covered in vomit. Ugh! We had such a good 2 days before today. I think I literally yelled out, "When is this going to stop?!" But reading up on feeding tube message boards, it seems that some people have it about 5 times worse than I do. So I'll try to count my blessings and figure out a way to stop this vomiting.

Anyway, we pulled into the parking lot of a Chinese restaurant and the reason I'm even mentioning it was because it smelled so good! I changed Christian, cleaned up what I could, and headed off to church. This isn't a church I normally go to, but I went looking for some kind of inspiration. It's actually the first time I'd been to church since Christian's accident, besides the hospital chapel. I didn't feel like I was quite ready because if the message hits a nerve I don't want to cry in front of an entire congregation of people. But, no worries. This wasn't an inspirational message today, it was actually kind of a disappointing service. Ah well...there's always next Sunday.

I'm developing my fundraising letter and I was going over all of Christian's progresses he's made. Honestly, it's been harder to track since other things - like day to day occurrences - take some of my attention. And then when you have the vomiting issue that's been overwhelming everything else, it's difficult to pull out the positives. But as I sat down to write about his progress, he really has had some progress! For example, his right hand is almost completely open. He even "feels." This means that when he's stimulated by something soft under his hand or something with texture, he will open his hand and go for it again. His arms can get completely straight voluntarily as he moves them around, whereas before they were bent. I've also noticed his feet have been flexing more instead of pointing downward. And, to our pleasure, Christian is becoming more vocal. It's mostly whining and crying but that's fine by me. He's even started to get more consistent with his cries. He will start to whine and cry if he needs to take a nap or is growing tired. He almost always cries when he's picked up and moved. So there has been progress, I'm happy to report.

Capping trials have commenced...again. The home health care company finally got with it and sent the trach tubes and catheters we needed to REALLY get started. I capped Christian for a few bouts of 15 minutes at a time and one time for 30 minutes. It's all positional right now. Meaning, he tends to freak out while capped if he's on his back or lying down in any way, shape, or form. The capping is most tolerated when he's sitting straight up and even leaning forward. I know he'll get there. It's just weird for him right now, using airway functions he's normally not used to using. If you remember, the valve he uses allows air in through the trach but not out. So he's breathing in air through his natural airway for the first time in 2 months!

Something else I want to mention is an online auction happening right now for a very good cause. If you remember Cici, her link is on my sidebar, she also has the same brain injury as Christian does. There is an online auction to help benefit Cici and the medical treatments she'll need for her recovery. You can bid on really cool items by visiting Happy bidding!
Wednesday, September 23, 2009

God is Good!

God is great
God is good
Let us thank him
for our food.

This is a prayer I learned when I was little and every time I think, "God is good!" this prayer pops into my head.

In all seriousness GOD IS GOOD! I have to raise a chunk of money and fast to get Christian started back on hard chamber hyperbaric treatments. This is what he was doing in Phoenix and I've found a great place in Tucson where I want to get him started again. We do have the soft chamber but it's not as strong as what he needs, just using it alone. I want Christian to get the hard chamber treatments and the soft chamber at home so he'll get the maximum benefits. Then he can also use the soft chamber in between sessions, as well. need money to this because insurance no likey the alternative medicine. Not yet.

Anyway, we can do fundraisers and we will do fundraisers, probably a whole mess of them. But in order to get Christian to start as soon as possible I'm trying to come up with a plan. Well yesterday after Christian threw up three times in a row (more on that later) I was almost at my breaking point. I got a letter in the mail for an organization called The Prayer Child Foundation. I remembered I had applied to this organization last month. They choose a child or a few children a month to donate funds to for medical expenses. I started to open the letter thinking it was a "Thanks for your story, but..." letter and it was a check for $1000! Praise God!!! Now with the money we've already saved up, a few other donations and this check, we are over half way there...and in just a week! This just goes to prove that where there is a will there is a way. So cliche, but so true!

I take this as a sign that we're doing the right thing. I've struggled with this a lot because at times I just want to try everything out there. But what I struggle with is whether I'm getting in God's way. If He has a plan for Christian, am I'm getting in there and trying to control the situation? Or am I really trusting God and what He has in store for Christian. At times I'm almost excited (weird?) to see what God has planned for Christian because I KNOW it has to be something big. But other times I feel like I'm raising against a clock to find treatments for Christian as soon as possible. But in the end will it matter? With or without the treatments will it still be the same progress because God is in control? How will we ever know?

So I've come to the conclusion (and I'll probably have to remind myself of this over and over again) that if God brings us the opportunity, we have to take it. If it's right, it will happen with very little effort. If it's not right, we'll know it because it just won't fit. When I got the donation in the mail, I figured that was my nod that we're doing the right thing for Christian.

As for the throwing up, the vomit, the spewage. I'm so over vomit! Christian was doing so well when we left Phoenix and now he's throwing up after or even during every feed. At this point I'm having to plan appointments around when I think Christian will have his routine hurl. He doesn't seem bothered by it or effected. He goes on about being Christian. But my head is swimming thinking what possibly could be the culprit. I don't want to take this up with a physician because they will immediately suggest a fundoplication without even seeing him, which I don't even want to entertain because if they were going to do it they should have done it with the initial g-tube surgery. And that's all he needs is another surgery. I'm not even convinced it's acid reflux! So, no, I'm not entertaining that option right now.

There a forum that's supposed to be really good for these issues and I've been dying to get on it (Parent 2 Parent) but the link is down or my internet doesn't like it so that's a dead end. We could change formulas I guess, but now I feel like we're just shooting in the dark. It is just so frustrating.

And I've decided I hate our home health care equipment company. And I'll name names - it's called Preferred Home Health Care. I'll spare you the boring details, but long story short, they're holding up our ability to downsize Christian's trach. They need a prescription. Fine, I had the pulmonologist send one over. Meanwhile, we're almost completely out of suction catheters of which I ordered before we were out but the genius put the order in for one catheter instead of one box (100 catheters). I called and asked for more and the snotty lady said we're only authorized 100 a month. I said, "Well, my son doesn't need that much suctioning anyway but what about the kids who need suctioning like 20 times a day."

"Well, that's too much. Anyone suctioned over 3 times a day is too much. It will cause damage." - Snotty Lady.

Okay, lady, I didn't realize I called a Respiratory Therapist. I thought I was calling for supplies. My bad. Didn't know you doubled as an RT. Do the RN's at the hospital know this because they sure don't follow the 3 times a day rule. Oh yeah, and I found out they called the Pulm office to see WHY we needed smaller trachs. Umm, aren't you a supply company?! My insurance is paying so send the damn supplies!!! What does it matter why we're doing it? Now I'm being snotty. There's that lack of patience thing again. So now we wait. Didn't I say I would spare you the boring details? Sorry, I don't know what happened to that.

Positives...Christian seems to be gaining strength somewhere and I can't tell if it's his back, neck, or shoulders. He's not slumping over in his carseat anymore. We used to position the heck out of him with props and rolled up towels and I'd have him perfectly seated, look back 10 minutes later, and his head had fallen forward and there was no fixing it. That hasn't happened in about a week. He's actually been "holding" himself in a seated position without slumping forward. His little hands are opening, too! First the right and now the left. And we just got him fitted for hand braces, which he promptly threw up on. Nice. I don't know if it's intentional, but let's just say it is, he's been batting at things or almost trying to feel things. And his focus...that's been the biggest improvement, I think. He really locks down on things and has started to follow with his eyes more. It's not just a stare, it's really turning into active looking. But his curve...he curves to the right. We need to get rid of that and it will happen as his tone decreases. Curve, curve go away!

Anyway, I'm exhausted and spent from this day filled with vomit. I bet you're glad you came to visit this blog today. At least it's only Vanilla flavored formula vomit and not real food vomit. Then I'd be in tears.

Off to unwind and watch me some Dancing With the Stars.
Monday, September 21, 2009

Times Like These

Song time again!

This song seems to follow me. It was played on TV during 9/11. I've listened to it during harder times, it's one of my favorite songs. We played it during our wedding, I thought about it after giving birth to Christian and I was reminded by it recently. It really just fits with any life changing event.

Times Like These - Foo Fighters

I am a one way motorway
I'm the one that drives away
then follows you back home
I am a street light shining
I'm a wild light blinding bright
burning off alone

it's times like these you learn to live again
it's times like these you give and give again
it's times like these you learn to love again
it's times like these time and time again

I am a new day rising
I'm a brand new sky
to hang the stars upon tonight
I am a little divided
do I stay or run away
and leave it all behind?

it's times like these you learn to live again
it's times like these you give and give again
it's times like these you learn to love again
it's times like these time and time again

I thought about this song again after I laughed so hard I literally felt myself starting to cry. Manny and I were goofing around and I started to laugh and then I couldn't stop. It was the kind of laugh that's uncontrollable, the kind you start to sound like an old smoker, you're laughing so hard. Then I started to cross this line where I thought I might burst into tears. I've never felt that way before. And I actually teared up. I started to think I haven't laughed this hard in such a long time. It was emotional just laughing. I had to get a hold of myself and luckily I could do that by looking at Manny's face again, which was intentionally continuing to make me laugh. I was cry-laughing so hard my eyes were puffy.

Christian had the most amazing OT person today. She was so in tune with him. She was new to him and we hadn't seen her before but I could tell she had a ton of experience. I loved her because she would "listen" to his body and every position she put him in she'd listen to his breathing and remark about what he was doing rather than what he wasn't doing. We're going back to her tomorrow morning. She did some new things with Christian which is always fun because some of the same things are done all the time and it gets to the point where I'm like - Is there anything else? Well, apparently there is! I heart her.
Friday, September 18, 2009

EI, Pulmonologist, Eye Doctor...oh, my!

What a week! So glad it's done, but, boy, do these weeks fly by when there is so much going on!

I finished out this week with a tiring, appointment filled Friday. I comforted...I rolled my eyes...I almost fell asleep...and I mentally did a happy dance. Yeah, that all happened today. Let's begin.

Christian had an early morning PT session today. He did a lot better than last time. I mean he wasn't 100% cooperative or loosey goosey like he tends to be with me, but he allowed the PT's to work with him. Not without protest, though. He doesn't seem to like his feet being messed with. I feel like something has switched on in his brain and he has been more and more responsive to pain with facial expressions and cries. Part of me is thrilled because this is a sign of progression (as opposed to laying still making no facial expression or sounds for the first 6 weeks). But part of me is wondering how much pain he's in. I feel like his legs are in pain. Or maybe his stomach? Hopefully, it will be short lived. Christian cried but not through the whole session like last time. Mommy comforted him and it was all good.

After doing my round for after school pickup on a half day (this was for parent teacher conferences...why have school if it only lasts 3 hours?..don't have the time to figure this out). Then I had Christian's Early Intervention appointment. The lady was nice, I guess. But this is how our conversation went.

"So what kind of services would you like for Christian?" - EI lady
"I want PT, OT, and speech 3-5 days a week." - Mama Bear
"We can't do that. We can only do 4 times a month for each service." - EI Lady putting her foot down. "Would you like PT or OT started first?"
(Insert eye roll here.)
"OT because it incorporates PT anyway for children his age." - Mama Bear
"Well, actually PT would be more appropriate for him to begin..." - Know it all EI Lady

Question: Why even ask me what I want then? Why don't you just write the service plan out yourself? You obviously have a goal in mind, don't let me stop you. Whatever you lack I'll just go out and find myself. I didn't have any more fight left in me and I was so tired and could barely keep my eyes open listening to her talk. It was a sufficiently boring and unproductive meeting. Do you realize that if I hadn't sought out Christian's therapies to start immediately, they wouldn't be able to start doing home visits until October 30th?!?! Unacceptable. We will continue with our 3-5 days OT, PT, and Speech we have on the calendar now.

The next appointment was with the Pulminologist. I was a little nervous about this because I didn't know if the pulm would be on the same page as we are in gearing Christian up for trach removal. Especially because (and I don't know if I've explained this) ultimately, the reason we had to go to Hacienda instead of straight home was because of orders from the pulm.

Well this one was great! She said she didn't hear anything in his lungs, deep breaths, and that everything sounded like we could start going down that path! First thing we'll do is get more aggressive with capping trials but make it easier for Christian by downsizing his trach. I'm so excited! (Insert mental happy dance.)

One thing I do want to work on is my patience level. I feel like I have none of it. I used to be really patient and Manny was the one who was short on patience. But as of late, we've swapped personalities. He's calm and patient with just about everything. For me...not so much. I feel like I have a list of things that have to be done and something unexpected doesn't fit. So if something unexpected happens, I feel panic. It's so silly because I've never had any issues with panic. But all of my patience is spent on Christian so I have nothing left when it comes to everyday things that pop up. Maybe it's pregnancy hormones, too. Those always make me impatient. Even listening to people talk, for example, tends to make me a little crazy if they can't get to the point. I'm not talking about my everyday interaction. I can BS all day with people. I'm talking about medical professionals that want to "chat." It's like, "Okay...hurry up...let's go, I've got things to do." Isn't that awful? Anyway, I'm rambling.

Oh yeah, I didn't mention Christian's eye appointment, I don't think. He did fine. It's exactly what was presumed - Cortical Visual Impairment. This means his eyes work fine, but his brain is trying to make sense of what's being transmitted through his eyes. The doctor remarked that he doesn't tend to scan like a lot of neuro kids do and that's a good thing, I guess, because he can lock into things and focus somewhat. Christian was also able to lock into some of his spinning toys. But we need the diagnosis for additional services to stimulate his visual development so whatever. The doctor said that CVI only gets better as the brain gets better so as we see more brain function and improvement, we'll see more visual improvement. Cool.

As for Mr. Christian, he's doing well, but as I mentioned, he seemed more agitated or like he's hurting somewhere. I was massaging his hipbone and he started to move his leg. Not in the flexion sort of way that he always does where he straightens his leg and points his toe. This was actual movement with a bent knee and flat foot. That's it! He's ready to run. He's in the hyperbaric chamber right now with Daddy and they're oxgenating away!

I'm sure all this medical jargon is fascinating to you, but if you're still with us, thank you so much for keeping up! All your thoughts and prayers have made a world of difference. I was sorting through some of his cards he got in the hospital and remembered how much despair we were going through at the time and how every single call, note, hug, and prayer meant so much to us. I was also thankful for just how far we'd come and how settled into our new normal we've become.

Ahhh...the weekend is here.
Wednesday, September 16, 2009

Bouncing Off the Walls

This week has been a week of appointments! Monday we met with the new PT and Speech Therapist....meh. It's hard because they don't know Christian so they don't know where he's come from. Day 1 was Monday for them, meaning that this is all they know of him. Made me miss the therapists in Phoenix. The Speech Therapist was okay but when it came to talk of his PMV, she talked to me like it was the first day he had ever worn it. I know she doesn't know any better and maybe she's not used to talking to people who take care of their own kids but we've been doing this for a month, lady. She also tried to tickle him and you don't tickle kids with neuro issues. They are already hyper stimulated so tickling only aggravates them more. Do I need to teach her a thing or two?

Today we had an appointment with the pulmonologist to assess Christian's trach. The funny thing about Christian's trach (and the doctor told me this would happen) is that when he's in the carseat, he ends up capping himself. Somehow he's uncomfortable with the PMV on while in the sitting position, probably something to do with the positioning of his airway. So I popped it off the other day. I heard his breathing and it sounded like the kind of breathing he does during capping trials - slow, deliberate, and deep breathing. Sure enough, Christian's head (which he can't yet hold up) had fallen over his trach and was blocking it...and he was breathing on his own. So I just let him fly. He wasn't in distress, in fact he was very relaxed. So now I guess we're doing our own sort of capping trials in the car. Anyway, I missed the appointment today. I thought it was somewhere else when it was actually across town so it's rescheduled for Friday. I just hope this pulmonologist is aggressive and open to considering moving toward decanulation (removal of trach). I hope she doesn't tell me, "Let's wait a few months and see then." Then I'll have to find another pulmonologist.

Because I missed his appointment today I decided to take full advantage of my time and visit the HBOT center in Tucson. I LOVED IT!!! It's actually run/owned by a neurologist. Funny - a neurologist that believes in alternative medicine...hmmmm. I even got to meet her, which I was excited for and reluctant to do at the same time because you know how I feel about neurologists. But she was the most positive neurologist I'd met! She remarked that Christian's tone and flexion (stiffly positioned arms/legs) wasn't as bad as typical near drowns so close to the accident.

(SIDENOTE: This meant so much, especially from a neuro, to hear something positive from a medical professional because of two paragraphs ago when the therapists didn't know Christian and how far he's come. Remember that? Okay, I'll continue)

She does EEG's and labs there at her office and can follow Christian's progress and manage his seizure medications (he doesn't have seizures, but he's on a medicine to prevent them anyway). She believes in HBOT (What?! A neuro that believes in HBOT you say?) and all of her patients had nothing but good things to say about the place and about her. I was honest with her...I told her my experiences with neuros haven't been positive. She laughed a little and understood, but it made such a positive impression that she took the time out of her day between appointments to meet with me. They also have a nutritionist on sight that can offer supplements that promote brain growth and proper nutrition for his condition and there were plenty of patients there to attest to the place. Oh, by the way, it's called Northstar Hyperbarics.

The most amazing story is Ryan's story. He nearly drowned at 2 years old and his journey is chronicled on the Northstar HBOT website. Ryan is 5 now and just happened to be in the chamber doing a session when I dropped in so I was able to meet him. Let me just tell you that this child was brought in to Northstar in a vegetative state. I almost cried when I saw this kid running, yes, running, down the hall. He had a huge smile on his face and then he cried loudly when he didn't get his way. He was bouncing off the walls! It was amazing! Now, he's had around 300 treatments in the last 3 years so he's done his time. I got to meet and speak with his mother and she was so nice and sweet and willing to share their story. I asked her what his success in recovery was attributed to and whether she'd tried any other types of therapies (besides regular PT, OT, and ST) and she said she attributes all his recovery to HBOT and his stubborn nature.

It was just so amazing to see this little boy walking and yelling and running and smiling. You couldn't contain him! I'm so excited and eager to start Christian again in the hard chamber. The soft monochamber is what we have at home which is awesome for supplemental treatments and maintenance in between sessions. But the hard chambers are said to be more effective and to be done in 40 consecutive sessions and then 40 more at a later date. So we HAVE to do both. I just want to give Christian the best chance possible. So I'm determined to come up with the funds so that we can start sending him to the hard chamber immediately AND do soft chamber treatments at home.

Tomorrow we have our appointment with the eye doctor. He'll probably get a diagnosis of Cortical Visual Impairment, which I've mentioned before. Let me just say...I don't like diagnoses. In Christian's situation, I feel like it becomes a limitation for him. I'd rather just say he's got a brain injury and let it all unfold from there. I like the unknown. But the funny thing is that the more your child is diagnosed with, the more services that are available. So Christian getting diagnosed with CVI will open up more services to him that will improve and strengthen his vision. So this appointment is more of a required step to get to the next point.

Friday we'll have more appointments, one with Early Intervention to finally get some in home therapy set up and then finally our pulmonology appointment.

Christian is doing well. He has seemed a little agitated for the last two days. I think he's gaining more sensation in parts of his body and pain is starting to make more sense or he's trying to express it more because his legs seem to be more sensitive. And our family is looking forward to an uneventful weekend with nothing planned. I love when nothing is planned.

I feel so blessed to have witnessed Ryan first hand and I only hope and pray for that kind of recovery for Christian. I know God will provide a way for us to get Christian what he needs so that Christian will one day be running around and smiling...bouncing off the walls.
Sunday, September 13, 2009

Two Candles

We were so happy with the party! Thank you to everyone who came and shared yesterday with us. We really celebrated Christian. The day was pretty perfect. It was nice weather, good food, tons of people, and Christian was there, which made the day perfect.
It was also great to have all the babies together. I have some friends that ALL have children around 10 and 11 and we ALL had our 2nd baby within the past year. So I was really happy they were all able to come and I could take a group picture.
(L-R: Shauna and Christian, Karen and Abigail, Janet and Mia, Paloma and Joaquin)
As mentioned previously, the theme was Superman since Christian is our little Superman. He wore his superman leg splints with Superman on the back (pictures of these soon to come). But he promptly threw up on his color coordinated shirt and had to change...a couple of times. He had a Superman jumping castle and blue and red decorations. The jumping castle was for all the other kids, but someday I know he'll be able to get in and go crazy.
Manny made a yummy cake that was awesome! It was one layer of chocolate and one layer of strawberry, with Oreo Cookie pudding in the middle. Below is a picture, but, of course, I have to ruin it with my picture taking skills. I had a bright idea that I would take a picture of it from the back since I was too lazy to move, and I would just flip it after I downloaded it on the computer. Yeah...not a good idea. See for yourself. My (lack of) picture taking skills doesn't do the cake justice. And taking a picture upside down and thinking the computer will flip also flips the words. But you get the idea.
We added two candles. One candle was for his first year of life and the other was to celebrate the coming year of life. It was important to me to be able to put another candle on that cake because it represents the future. We invited a pastor that came to visit Christian in the hospital to say a prayer before blowing out his candles. Manny also thanked everyone and said an emotional speech about how lucky we were to have the people we have in our lives to get us through and how blessed we were to have Christian. Then we sang happy birthday and we (I) blew out the candles. I have to admit that I got a little choked up singing happy birthday because it was a song that almost wasn't. And I felt so blessed and humbled to be able to hold my baby and sing that song.
Manny's Speech
Singing Happy Birthday
Blowing out the candles.
Our version of the "Smash Cake."
He did surprisingly well for all the commotion that was going on around him. But he did need a party break when it got later. It was weird because it was like he was feeding off the energy. When I would put him down in his crib for a rest from people he would start moving his arms and looked like he just wanted to join the party again. But I finally cut him off when it got late and he went right to sleep. The party started at 4PM and didn't wind down until close to midnight. That's pretty typical of our parties, though, and it always makes me happy that people don't want to leave! Fine by me, I just got up and announced I was going to bed.
Then, early in the morning I was awakened by Christian...he was crying. My husband yelled over, "BEST SOUND EVER!" Couldn't have said it any better myself. I would have picked him up and held him but that sometimes makes him even more agitated to be moved so much. So I turned him on his side, which relaxes him, patted his back, and he fell asleep. I had never been so happy to be awake before dawn.
Thursday, September 10, 2009

Sleepy Superman

Above is the birthday and life celebration flyer for Christian that my husband made. It's not the greatest quality because our scanner isn't hooked up and I had to take a picture of it. Also I took out our address for obvious reasons and cut off the bottom half just because I've got photographic technology deficit disorder. But he did a great job and I wanted to show it off.
Christian is getting his first round of OT tomorrow since being back home. Separate from what I give him, the expert that I am, every day. I'm so excited. I mean he's gotten OT before, quite a bit actually, but I'm still excited that we're touching ground in Tucson.
Christian also had his first appointment with his own pediatrician since being back home, and really since the accident happened. I was a little wary of the appointment for a couple of reasons. One, because it was a first since the accident. Two, because I was taking Christian in public and I didn't know what the reaction of the nurses would be, if they'd remember him, etc. Three, because I wasn't sure if the doctor was going to try and push 12 month vaccines. And, four, because I wasn't sure if Dr. D (the ped) had experience with special needs children.
All went really well, though. The first nurse weighed him and said he weighed 19 pounds. I was thinking that could not possibly be right. He would have had to loose 3 pounds since being home. So they weighed him again and sure enough he was still 22 pounds. And Christian was so relaxed and loose that everyone there just thought he was asleep. This was kind of funny to me since he wasn't really sleepy at all. The difference is that he used to be so stiff, he wouldn't even lay against me. But his progress with his tone was so great, everyone just thought he was sleepy. It was a little sad because I thought to myself, 'I wish that was the case, that he was just simply sleepy.' But it was more humorous than sad for me and a good sign in terms of tone for Christian.
Dr. D spent A LOT of time with us, which is why I've always liked him. We went over his progress and even he remarked that his tone looked really good, and this is with no increase in meds. He said he didn't have extensive experience with special needs, but he did have special needs patients and would love to keep seeing Christian. He was also really supportive of everything we were trying - hyperbarics, cranial sacral stuff, etc. And the best part was no immunizations! This was a touchy subject for me since his little brain and little body is in such a fragile state, I didn't want to introduce anything that could possibly alter any progress he's making. And to my surprise, Dr. D completely agreed. So we're holding off until a later date. When? I don't know. Just not right now.
Alright, time to go give Christian a bath, exercise him and stretch him, and off to beddy! Hopefully the bath and exercise will make for a truly sleepy Superman.
Wednesday, September 9, 2009


"Life's a garden...dig it." - Joe Dirt

We had a family member in town that kept saying this tag line and how can you not giggle when you think of Joe Dirt's twang as he utters this phrase?

I'm digging being at home right now. But it hasn't come without stress. When I was at Hacienda all I had to concentrate on was Christian. Being at home, the rest of your life gets in the way. Things like dishes and dinner have to get done. It's an adjustment, but I also feel like Manny and Gabe are doing much better now that I'm home. In fact, Gabe just tried to debate me on why grades shouldn't matter when playing after school sports in middle school. Ha! Silly boy.

Another stressful issue has been lining up therapy. I think I've mentioned that I love the town I live in. But what is up with not having ANY services? I seriously googled Pediatric Physical Therapy in Tucson and got crap for results. I've heard services are very scarce but I don't understand it. Are there not children in this town with special needs? Do all families just pick up and move to Phoenix for services? I don't understand the complete lack of knowledge and availability in this town for services. I know it's only been a week, but my mission was to line up therapy as soon as possible so there wasn't a lapse in progress for Christian. I did find a program that gives interim therapy while other therapy is being lined up, but I just heard back from them today. Am I just impatient? Probably. But there doesn't seem to be any sense of urgency on anyone else's part so Mama's gotta get things done. I feel ineffective when things aren't getting done.

That leads me to a high point of today...we got OT and PT appointments scheduled! Hallelujah, people are doing their jobs! Our first appointment is Friday morning and our next will by Monday. I'm so excited to get this ball rolling. What I'm not excited about is that these therapists are new to us and don't know Christian or how far he's come. I just hope we all vibe. I also found out today we finally qualified for long term care, which will be a huge financial burden off our shoulders and the insurance will correlate with the Department of Developmental Disabilities and Early Intervention for Christian to receive therapy at home. It's only been a week at home and it feels like it took forever to do this but it really didn't. It just took a lot of persistence. I'm just not one to sit around waiting for them to call me so people are going to get a little harassed now and then.

I'm also a little overwhelmed by how many "things" Christian's needs. When I registered for my baby shower with Christian, I didn't register for a lot of things I should have. Mainly because I stuck my nose up at some of the new "inventions" that were around when ten years ago I made it just fine with Gabe and about a quarter of what we have now. What was I thinking?!?!?! Some of those things really would have come in handy right now. I finally purchased a Boppy pillow (I know, a little late) but it's great for Christian's positioning when he's hanging out and it's also great for tummy time (tell you something you don't know, right?) We've put in an order for his tumble form chair, which is a special positioning chair and a special stroller that I really like because it looks like a stroller but has special functions just for Christian. Getting this items will probably take a few months so in the mean time, we're using a jogging stroller. I'm on a search for a really cool mobile to hang over his crib and really annoying sensory toys that have lights and sounds and gadgets, oh my! There's just so much baby stuff that I'm thinking would come in handy! Ah, will be fun shopping and Lola will reap the benefits.

Tomorrow I'm going to pick out decorations for Christian's Superman themed party. I'm so excited to celebrate his life and the fact that he's here with all of our family and friends who supported since the beginning. We have such a great support system and we are so blessed.

As for Christian, he is Mr. Loosey Goosey. Let me explain...he has had a lot of posturing and stiffening. This is common in brain injury. We have braces for his arms and legs, which I love, and they've almost helped him to be aware that he has limbs that he can move. I've only seen progress since using them. But his arms and legs have been so stiff in the past and they were hard to bend. But now his arms bend fine, and there is little resistance. With his legs, he is still stiff but he's bending a lot easier. It's so neat to see him so limber and it's getting easier every day. And now I get whimpers everyday more consistently when he's upset, which is always music to my ears.

As soon as this place (when I say place I mean household) is up and running (when I say up and running I mean functioning at a level that won't lead to insanity) I will post pictures.

Until next time, I'll be diggin' my garden. (He, he, he :) )
Monday, September 7, 2009

Seriously, we have our own HBOT chamber?!

The eagle has landed!

We are now the proud and hopeful owners of our very own hyperbaric oxygen chamber! I want to say a big THANK YOU to everyone who donated on Christian's website. I also want to say a never ending THANK YOU to the August Moms, honorary August Mom Jenny, and anyone else who organized this fundraiser, promoted, and helped this possibility come to fruition. I never, ever thought this would even be an option for us, at least not for a while. I'm still a little in shock that we even have this in our home and I really, truly believe this will help Christian in so many ways and now he can do it from the comfort of his own home.

Another BIG, FAT, THANK YOU to Cindi who also made this possible. She is who we were able to get the chamber from and she was gracious enough to travel all the way to Tucson to deliver it! God bless her! The care and concern she showed for us and for Christian was nothing short of amazing. She also brought some gifts. She brought me a pair of beautiful earring her father made out of stained glass from a church that she used to attend that burnt down a while ago. She prefaced the earrings with saying, "they are filled with prayers." I love that and I'll feel those prayers every time I wear them. She also brought some other stained glass creations made by her generous father to hang in the window for Christian to look at.

Here is a picture of Cindi and Christian.

We are still in the process of moving (Ugh!) and hopefully that will be done within the next few days. Christian is doing great! In all of his pictures, you all have probably noticed that he has closed fists. And on some days they are really tightly closed. But he's really started to loosen up! In fact, his right hand has begun to open a little as if to grab when he moves his arm. And boy is he moving those arms! He's also been making more and more sounds. They aren't consistent yet as far as crying all the time goes, but they are consistent with agitation. He cried a little when I took his shirt off and it got caught on his huge head. He cried a little when I peeled some tape off his stomach where I secured his gtube. So he's coming along!

He's also been moving his head more, he's been able to bend really easily (especially in the legs which is where he is stubborn), and he's been a lot more responsive in terms of when we go to talk to him, he'll look to us. It used to be a slow search for us or sometimes he wasn't even interested. But lately, he'll look right at us as soon as we go talk to him.

I'll be posting pictures of his new digs soon along with our new chamber. Thank you, again and again to everyone who made this possible.
Friday, September 4, 2009


We're of.

Yes, we were discharged. But that almost didn't happen. Manny came up to get all of our stuff together so we could go, we're taking things down to the car, and the social worker walks in and says, "Hey, uh, the health care equipment company can't deliver your things today. They can't deliver it until tomorrow. So do you mind staying another night? I know you came all the way up here..." Yes...he was serious. We were supposed to get the delivery of Christian's feeding pump, which is kind of essential if you ask me.

I looked at him and asked, "Can we go pick it up?"

He said he'd go call and ask. You mean you didn't think to ask that while they were saying they couldn't deliver it? So he asked and they said yes. Manny said he didn't care if he had to stay up all night and syringe feed Christian, we weren't staying another night. So we raced over to the health care company after our last session of hyperbarics in Phoenix (for the time being) and made it there an hour before closing. We got our feeding pump!

It was a bittersweet departure. Especially for our roomie. We both said goodbye to him because it's most likely that will be his home for his short little life. We left him a teddy bear and we left some decorations we had for Christian for the next baby. The car ride home was long and it was late and dark when we finally made it to Tucson but I had never been so sure of how much I loved Tucson.

Now when I say that we're "kind of" home it's because we are in the process of moving. Yes, there is more on our plate. We were already planning on moving prior to the accident and we're actually moving in with family for the extra support and so I can concentrate on the kids and Christian's recovery 100%. But we didn't want to move Christian to the old house and then again to the new place. So we came straight over to the new place, which has been what's best for him because all of the medical supplies could come straight over. But it has been crazy! I think my brain goes into safe mode so I don't combust because I've been amazingly calm about the whole situation. On top of that, Christian has been amazingly easy to take care of in this whole transition. He travels relatively well, too. So I'm not uneasy about taking him with me when I drop Gabe off at school. I think I'm just so happy to be home that I don't care what's going on around us. Don't get me wrong...I cannot wait until this move is over! This should be accomplished by labor day.

Another hiccup - Christian's feeding pump apparently came with a bad charger. In the middle of the night last night, the feeding pump started beeping at us that it was almost out of juice! And there's no other backup, as we found out, other than syringe feeding. He's on a continuous feed of 40mL an hour. Yeah, not practical. Luckily the home health care agency pulled through and made arrangements to deliver a new pump and working charger at 12:30AM. I love when people go out of the way and beyond their job description. I honestly don't know what we would have done.

I also found a program that provides interim therapy while families are waiting to set up therapy so there is no lapse in services. How cool is that? So we turned in our prescriptions for therapy today and I'm hoping we'll get that therapy started next week.

Now the big news...WE ARE GETTING A HYPERBARIC CHAMBER IN OUR HOUSE FOR KEEPS TOMORROW! I know, it's insane. Many angels mobilized and organized to get enough donations to afford a chamber for Christian to use in the comfort of his own home. And the seller is amazing because they are working to make this happen for Christian, too. Again, I know, it is insane. Insane because amidst such tragedy, pain, loss, hardship, and struggle for everyone in these current times, there is hope, triumph, generosity, and faith beyond reason. This is really part of the miracle and many miracles that have happened to Christian.

God has shown me that despite such sorrow in this world there is love and there is good, without a doubt.

Manny just made homemade shrimp tacos. Yeah, we're home.
Tuesday, September 1, 2009

Attainable Goals

A couple of things I can't hold in...

1. CHRISTIAN CRIED TODAY!!! It was in the chamber during oxygen therapy. There is an intercom system where you can hear everything that goes on along with a camera to view inside. I heard this sound of crying and I knew no other children were in the chamber with him. So I asked if that was Christian and the assistant (who goes in with Christian and works his legs) said that Christian had been doing that for a while. He said, "Is that okay?" I just told him it was new and it was a big, fat, deal because Christian doesn't cry. It was so nice to hear him cry, ironically. I told the assistant to keep making him cry so I could call Manny and let him hear over the intercom!

2. Because of the above, I am a total believer in HBOT. If I think back to Christian's first whimpers, they were always right after coming out of the chamber. Or they were always strongest coming out of the chamber. And we've only done 16 treatments. I think that's proof enough for us to keep going!

3. I talked to my dad today and he gave me some perspective. He said it was amazing that Christian hasn't regressed since he was stabilized. In fact, he's progressed. He hasn't had to go to the ER once, there hasn't been one scary night, nothing but positives. It's hard to see things like that when you're all wrapped up in trying to see new things and getting him to improve all the time. An even bigger miracle is that he hasn't regressed!

4. When I spoke to the EI girl, she went over the immediate short term goals we made just 11 days ago. They were to see emotion from Christian and to get discharged. And both of those things are happening! God is so good.

Going home tomorrow...butterflies in my stomach!

We're Finally Going Home!


It's frickin' official! We're going home. The doctor came and checked Christian yesterday. He commented on how Christian had gained 2 pounds (thanks to finally not throwing up anymore) and he sounded excellent in his lungs. Nice and clear. So he's signing the discharge papers and he's already written an order for our prescriptions. We're going home!

I'm so ready for this. I'm ready to not hear the beeping and alarms all night from our roomie. I'm excited not to wake up to random people standing over my son in the middle of the night "needing" to change his diapers or take his vitals. I'm ready to sleep next to my husband. I'm ready to hang out with my Gabe.

I'm going to miss the therapists and I'll think about the other kiddos who will remain here. I'll think about the little souls that share a hallway with us, each of them fighting their own battles. Some of them with mommies and daddies and some without - most without. I'll think about our roomie who, in all honesty, doesn't have much time left. This is his home and he'll live his life out here. I'll miss the walls that protect us here. This is where everyone is the same, every child here is special, all of the parents are facing the same struggles and journey. Once we leave, we will be the odd balls out trying to fit in with main stream. I'll miss it...but no where near enough to stay another day.

Yesterday I came into Christian's room to see that speech therapy had already started without me (I hate missing it!). The therapist said, "He tracks to Spongebob." Thank you!!!! I know this. I'm so glad someone else saw this. No, he will not track to a stupid pen light. But you put Spongebob in front of him and you have his attention. She also said he was sucking his pacifier and latching onto it. This I also know because he loves his pacifier.

This almost 2 months of hospitalization has been such an emotional journey. But this part of the journey has come to an end, with good and promising conclusions, thank God. There are times when I get sad, this usually happens when I see old pictures of Christian. It is still a physical pain in my chest because I miss that child so much. But I spoke to God the other night and thanked Him for giving me that baby for 11 months and then giving him back to me again for a second chance. Although he might not be that same Christian (yet!) I am pleased and honored that he was given back to us, no matter how he came back to us. I accept the gift that God has given to me. As Cici's blog reads, "accept the gift as if it were the one you chose." I didn't understand this until I read one particular blog. It explained that we chose this path because we chose for Christian to live. And we choose for him to live and progress each day. So, yes, this is what we chose. And if asked to make the same choice, we would gladly make that choice every day.

I'm not sure if I'll have the time to blog in the next 48 hours. We are getting Christian's Superman AFO's (leg splints) today and then heading off to hyperbarics. Then tomorrow Daddy's coming up to help us make the big move!

Thank you all so much for taking this journey with us. It's no where near over and in a sense, we're starting a new journey. But all of your comments, support, and prayers keep us afloat.

See you on the other side!

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