Charlie Brown

I have to share pictures of how far my baby has come! I love love love him! If you look closely, and I mean REALLY closely, you can see a whisper of a mohawk, courtesy of Daddy.

My little Charlie Brown

Daddy and Christian

Daddy and Christian pouting.


And this is what happens when Daddy comes to visit.

Advocate

Daddy's here for a visit! It's always fun to see my husband, especially after a whole week. Gabe didn't come up because he wanted to spend the night with his friend. No biggie. He'll come up next weekend. Manny is staying at the Ronald McDonald House, which is such a nice place. I mean they help families with sick kiddos and a lot of it is run on donations and grants. Today I met a little girl at RMH that was in a little wheelchair, I think it was the smallest I'd ever seen. I bet she was about 4 years old. She had so much personality! I was carrying an armful of stuff and she asked me what every single thing was and what it did. I was a little afraid of her by the end of our meeting because she was so determined to know why I was carrying what I was! But she was so darn cute with her pigtails, I couldn't just leaving her hanging.

Christian's doctor came to visit him yesterday and I had Christian lying on my bed. When he lies on my bed, he really relaxes rather than if he's just in his crib. The doctor remarked that he looked a lot better and a lot more relaxed than when he has previously seen him. I spoke to him about maybe doing continuous feeding over night so we can spread feedings out during the day. And, to my surprise, he was open to it! So we'll see how that works starting Monday. I also talked to him about the Passey Muir Valve (thanks for the suggestions ladies, now I have street cred ;) ) and he said he'd speak with the speech therapist to see if Christian was ready for that yet. I love receptiveness!!!

So in the last 24 hours Manny, the PT, and the doctor said Christian is looking and doing much better. Sometimes it's hard for me to see because I'm with him every waking minute (and I wouldn't have it any other way.) But it's nice to hear from others because I'm so proud of him. I literally put my blood, sweat, and tears into him (maybe not blood, replace blood with more tears). I'm so determined to give him strength so he can have the best environment to recover. Recovery will be long and hard but I want to make sure he has an atmosphere that promotes healing and makes it easier for this little boy who will have a difficult time. I have never felt as passionate about something as I do about my children. I could go on but I'll spare you. The point is that I only loosely understood the phrase, "be your child's best advocate," until now.

End of week 1 is done!

Christian and his tummy time.

"I want my fist!"

Finally, the end of our first week and my favorite PT came today!!! Yipee! She has so much experience and knowledge about little babies with disabilities or injuries. She used to have her own practice with her husband but sold it in order to have a less hectic work schedule after she had her babies. In her practice, they used to do hyperbarics and she's the one that studied under Newbauer who was some kind of pioneer for HBOT. So, yes, tons of experience. But she only comes on Fridays so I look forward to Fridays. She worked with Christian today and she hadn't seen him since last Friday. She said he did so well!!! They got his knees completely folded up against his chest. She was so proud of him and said he looks so much better since last Friday. It was so nice to here! And then at the end of her session she said, "Christian...all you have to do is ask Jesus to make you better!." And she told me she believes that when children ask God always delivers. It was so comforting to here a medical professional refer to faith and God. She is so my favorite.

We finished out our week of HBOT and we finally got the hang of the new schedule. We'll be going Monday-Thursday and all of Christian's chamber mates love him already. It's a multi chamber so 6-8 people are doing a session with him. There is a man who had a stroke and his wife, a boy with cerebral palsy, everyone has a different reason.

We are willing to do whatever it takes to help Christian's recovery. That's why we aren't letting expense stand in the way of our mission - get Christian well! But you really don't realize how expensive treatments are until you actually start spending the money. But luckily, we were able to take care of his HBOT sessions in Phoenix until right around when we leave. SO THANK YOU TO THOSE WHO HAVE DONATED. This is why we were able to do this so soon after his accident and I'm forever grateful to you. As for his HBOT treatments in Tucson...we'll cross that bridge when we get there but I don't care what we have to do, we're doing it.

It's a funny thing about Christian. His cough is becoming stronger and more frequent. It just makes me think about all those doctors saying he may never get a cough and that's why he needed the trach. I heard about a cap you can put on the trach which allows less air past the trach so that more is forced through the nose and mouth. It also will help him vocalize if he chooses. And then if he does well on that, we can cap the trach. I want to start as soon as possible so he doesn't get used to breathing with the trach but I have to wait until we get to Tucson because I'm not intending to commit to any doctors here unless I fall in love with them.

It also looks like we are getting qualified for therapy home visits, but I told the early intervention program representative that I didn't care if I had to drive him somewhere, as long as he gets what he needs. But the fact that they're coming to our house is so much more convenient.

Daddy's coming tonight!!!! I can't wait. He's bringing lots of toys and goodies on his sleigh! I don't know why that song popped in my head. But apparently Christian has received quite a few packages that wonderful people have sent to him. And, I think Daddy might also have some Mexican candy for me. Yay! It's an Arizona thing.

And to all those individuals who have made it possible for us to do HBOT, continue HBOT, pay for additional medical expenses, and additional medical treatments, there are just no words to describe how I feel about you guys. God has brought you into our lives and we hope we are able to pass on the grace and generosity you have given to us.

Tummy Troubles

As I’m writing this blog, one of the tiny little babies down the hall is being worked on by the paramedics because he’s having trouble breathing. More trouble than what the respiratory therapists can take care of. And the baby we room with stopped breathing about 10 minutes ago. The nurse was able to revive him but she said she thinks it’s going to be “one of those nights.” It’s very quiet right now in the halls because all of the nurses are in that tiny baby's room. I hope everything is okay. It’s scary stuff.

Christian is doing really well. Well, let me backtrack…he did throw up quite a bit last night. It’s not a violent throw up, in fact, I would liken it to a heavy spit up. So I had a rather sleepless night. He was agitated by something, his heart rate was fast and his stomach probably hurt from these near continuous feedings they keep prescribing for him. I finally told the nurse, after cleaning up his bed three or four times, just to hold his next feeding so he could have a rest. And, waddya know, he felt better and stopped throwing up. Mama was still tired all morning, though. Christian was tired, too.

It was Christian’s first trip to the therapy room. This room has all the fancy tools that will help him get back into action. They usually do therapy in his room, but there is a lot more in the therapy room they can work with. The only thing was that Christian was tired from the throwing up and lack of sleep at night, so he just wanted to sleep.

The therapists have been talking to me about allowing him to go in the pool for water therapy. They were really careful about asking me in light of the accident. But I told them I think it’s a good idea. Christian loved the water and he wasn’t ever afraid of a single drop of it. Salt water, pool water, bath water, he loved it all. So if going to the water awakens any kind of sensations or memory tied to his love for water, I say go for it. It might be hard to watch and I don’t know what kind of emotions it might bring out but, man, that kid had so much joy when he was splashing and kicking in the pool. And that’s what I have to hold on to. Christian will have his water therapy next Wednesday.

I also met Christian’s “doctor” today. Yup, I don’t like him, just as I suspected. I asked him about adjusting his feedings gradually and I won’t go into all the boring details of milliliters and the like but whatever I suggested, he basically told me no. Wait, not basically, he told me NO. He said my suggestion wouldn’t give him enough calories to put on weight. Um, have you looked at the kid, doc? He looks like a two year old. I highly doubt loosing a few ounces at most over a trial of a few days is going to leave him lacking in nutrition. He also suggested fundoplication if Christian can’t tolerate feedings. This is when they surgically tighten the top of the stomach to prevent acid reflux and throwing up. That would have been fine and dandy had they given him this procedure when they gave him the other surgical procedures. But now to have him have ANOTHER surgical procedure because you don’t want to bother with taking the time to figure out what’s going to settle with Christian is unacceptable. I’ll control the feedings without the doctor knowing if I have to…tell me no.

Christian had another round of HBOT today. It went well, he did great in the van ride over again! While on our excursions, we put a little tube on his trach. It looks like a bow tie and keeps his air humidified and also always allows an open airway, even if his head falls forward on top of it. Well, while in the chamber today, Christian got a little “snorkely” and would normally need to be suctioned. But, instead, he coughed so hard he blew the “bow tie” right off his trach! I have a feeling the trach won’t be around for too long.

The speech therapist was really happy with Christian’s progress, as well. She even remarked that he looked so much better than Friday, which is when she last saw him. She gave me some exercises to do with his lips and mouth. I asked her about allowing different flavors on his tongue, as suggested by a friend of mine, Rochelle, who went through the same thing with her daughter. She said to try a little flavored toothpaste for now just to wake up those senses.

I think back at all the things that we were told by the doctors and nurses. Things like, “He may not ever come off the vent.” And a few days later he was off the vent. Christian is capable of so many things it blows my mind. It’s like he heard what the doctors were saying and he decided that he would personally make sure he would meet their challenges. So he’s heard them say he may never eat by mouth and his sucking and swallowing are getting stronger and more frequent every day. He heard them say he had no cough and he’s coughing hard enough to blow things off of or out of his trach. I know he’s going to keep going. He is such an amazing little boy.

Oh yeah, the tiny baby down the hall is okay and so is the baby we room with. Just thought I’d let you guys know.

Breathless

exhausting, proud, awesome, beautiful, trying, dramatic, encouraging, breathless

Above are all words I would use to describe this day. First I woke up to Christian throwing up a little bit. That's fine, we're use to that. I hurried to get his suction catheter together, which was hard with sleep still in my eyes, but I was managing. As I'm fumbling around to put on my gloves I hear coughing...I hear two big, powerful coughs!!! This is gross, but Christian coughed the phlegm right out of his trach tube! And he cleared his own throat. When I was finally ready to suction, he was already done with it. I know you are all throwing up right now but I've never been more proud of phlegm expulsion in my life! And what's better is that he did it again later in the day. It was such a powerful cough I thought it was a sneeze. Couldn't have been, though, because I would think that would have gone through his nose and this originated from his chest. It even sounded like a real cough. Awww, bodily functions.

I worked with Christian so much today. And when I wasn't working with him, the occupational therapist came in and worked with him. We bent both legs all the way up, he was so much looser, he was just doing so well! I gave him a bath, which honestly, is like an hour long process. We're talking the actual bath, trach care, gtube care, finger nails, mouth care, lotion and massage, and we're finally done. Then we had a visit from Gramma and Grampa, more occupational therapy, and off to HBOT! What's the difference between physical therapy and occupational therapy? I asked the same thing. Physical therapy, as it was explained to me, is more movement and joint related with the larger muscle groups. Occupational therapy involves range of motion integrated with sensory objects. In infants they really work hand in hand. The Occupational Therapist is really loving, she's like every one's talkative next door neighbor. She also explained that most of the children here don't have parents that stay with them or even visit. So she said she won't be kissing on Christian as much, since he has a mommy and the others need those kisses because they don't get any love. Poor babies.

So then we get to HBOT. Talk about drama! This is the deal...it was required that I have a driver and a respiratory therapist accompany Christian. They were both really nice and talkative. The RT has a really strong personality. The problem is so does the HBOT director. They butt heads left and right. The RT had questions about suction and what if Christian is in distress, how long will it take to decompress? Can she suction? Is there suction available? Can he go in with Christian? All this because I can't go in with him because I'm pregnant. The director of HBOT said it's okay after the 1st trimester but nobody REALLY knows for sure. So Manny just said if someone else is there to do it, let them. So that leaves the director, who's done it before, and the RT. The RT said he was going to go in with Christian. The director said, "Nope, not today. I need paperwork on you and we don't have time for that."

Then the RT said something back, then she said something back to him...it was awkward and kind of funny. All of this because she was late and flustered. So in the end, the RT will go in with him after his paperwork is done. The director went in with him this time. While they're in the chamber, I can see what's going on through a small screen that's watching everything. The director was stretching and massaging his legs and arms and he was as cool as a cucumber. I know people are curious as to what this chamber looks like. It looks like a submarine with a TV in it. Whatever gets the job done. I was secretly happy my RT and driver were there because they were both REALLY concerned about the welfare of Christian. I was thinking, "Holy crap! These people really care about my baby!" It was a nice feeling to know that they were looking out for him.

I was initially really nervous about the transport. Last time Christian traveled it was from Tucson to Phoenix in an ambulance. He was so aggravated and warm that I wasn't looking forward to another transport. But he did great! We put a little cap on his trach that allows him to breath humidified air but still be picked up and carried around. He rode in a stroller to the transport van and it was like carrying around my Christian again. It was so...normal. He was strapped in to his car seat like a big boy and fell asleep on the way there. He did really well in the chamber with no issues and was completely relaxed. He then fell asleep in his car seat on the way back. When we got back into the room, he was still so relaxed. I hooked him up to his pulse ox monitor and his heart rate awake was in the 120-130's! He's usually in the 150's awake. I don't know if one session of HBOT can relax him so much but all I know is that I had a happy baby after all was said and done. Back again tomorrow!

I also spoke with the speech therapist who came in and said she heard Christian was doing really well in their meeting. She said he looked a lot more relaxed and said that the sucking motions were really good signs! Yay! Let's hear it for positive reinforcement! Christian is even stimulated to suck when I put the suction catheter in his mouth to suck out the extra drool. So there's a lot of mouth movement going on which pleases me to know end!

Christian doesn't do anything emotional yet. He doesn't make facial expressions. He doesn't cry or vocalize and I don't know if it has to do with his trach, I'm not jumping to that conclusion quite yet because he hasn't made any attempts to do these things. And this part is hard because it's the part that makes Christian who he is. But I know this is coming, I just have to have patience. Nothing is going to happen overnight. It's on God's time and Christian's time.

Despite not getting any emotional response, I can say that it's really starting to feel like I'm getting my Christian back a little bit at a time. The emotional part will come later. I was able to pick him up today, put him in a stroller, stroll him around, and strap him in his car seat. All of these mundane things used to be part of going through the motions. Now, everything I do with him is a gift. Even being able to put my baby, wireless, in a stroller and walk him outside in the sun and then strap in a car seat, comfortably, are so huge that I can't even explain it. To watch him fall asleep in his car seat as if nothing had ever changed took my breath away.

A Blessing of Sorts

Oh, baby Christian...you impress me everyday. Mommy is so proud of you!

Today was BUSY! Gabe started school today and needed an extra two shots! Yikes! And they hurt him really bad but he was able to suck it up to look cool for his first day.

Christian was such a superstar today. He was so loose and able to move. The occupational therapist worked with his arms and said he was coming right out of his locking up. His back wasn't as arched and with support to his head and neck, he's able to sit straight up. He really loves that position, too. His little eyes look around and his heart rate drops so I know he's comfortable. I even caught him moving his foot up and down and not in response to his tensing up. He was just moving it back and forth and following it with his toes. These little things that his body does I always took for granted before, but now they're little celebrations. I celebrate every twitch and move he makes, whether on purpose or by accident because it means the brain is waking up and making connections no matter how small.

I've also been working on Christian's oral stimulation. He's been making sucking motions more and more frequently and some are so strong, you can here him smacking away in there. So, I think I've mentioned that the speech therapist said to work on his oral stimulation with a pacifier. This is important because those muscles in his mouth will help him speak one day. The sucking and swallowing will help him learn to eat by mouth again. And he doesn't want to miss Daddy's cooking, absolutely not. So this is something I wanted to jump on. He didn't respond to the pacifier they had here so I brought one from home. The one from home seemed more conducive to his sucking reflex just by it's shape - it's narrow and then bubbles out like a ball at the end rather than just a straight nipple.

Well, I was able to maneuver the pacifier past his teeth and into his mouth and wouldn't you know it he sucked on it! And quite a few times! He did take a pacifier when he was about 2 months to about 6 months. Then he spit it out. But the point is that pacifiers are not foreign to him. Was it a coincidence - the pacifier was in his mouth while he was practicing his sucking reflex? Who cares?! He was stimulated and responded, whether by accident or on purpose, he responded. And I tried to take the pacifier out of his mouth slowly to see what he would do and responded to that by sucking again! Daddy better start cooking, because we are on our way!

I'm finally comfortable here at our new digs. Would I take Christian and leave if they told me we could? In a heartbeat. Honestly, I couldn't stand this place and I could write a whole separate blog about it. But I won't. I've decided to accept and embrace this place. I've made our little corner of our room into a miniature apartment. We decorated the heck out of Christian's crib, we have food, entertainment, and we've made it ours. I've taken over all of his care, accept at night so I can sleep. And that's only for his feedings, which are every two hours. I administer his medication, bathe him, and I do his trach care. I change his positions, do range of motion exercises, mouth care, suction, and calm him if he's agitated, which isn't as much anymore. I also put him to sleep, which is a great joy of mine because I know he's responding to something I'm doing, whether it's rocking him, putting him in a position he's comfortable in, or turning on the mobile he likes. So now I look at this place as a blessing. It's a blessing because I've relearned how to take care of Christian and I know him again.

I was also thinking that if I am weepy and upset about this place, who will be strong for Christian? He already has such a struggle, I need to be his strength. I need to be strong for him so he can fly. And I can't very well be strong if I'm waking up thinking about how much it sucks to be here.

So I have a new perspective. We're here for Christian. We will make the best of it and because of this place I have become a better mother and a stronger mother. God will see us through...I know He's not done with us. These situations really show you what you're made of and you have to reach down into the depths of your soul for strength and faith you didn't even know you had. I'm not special. I'm not stronger than anybody else. I'm just doing what I have to do and at times that's meant relying on faith and faith alone when nobody else believed.

I haven't met Christian's new "doctor." I put doctor in quotes because I'm not sure what kind of doctor he is. Pediatric? Special needs? What? I just know that I looked over his notes and I already don't like him. Just scribbles of severe anoxic brain injury...blah blah blah. I don't want to know your opinion, I don't want to hear the text book term, I don't care what your drive by assessment is. Know why? Because I see his progress with my own eyes and you don't even know him. Get away. Why does opposition make me so feisty? But keep opposing us because it just makes me have even more faith in my boy, "Doctor." I'm really on a mission to find professionals that BELIEVE Christian will recover and succeed. Otherwise, I don't have time for you.

Okay, don't let me get up on my soapbox.

Tomorrow we have our first HBOT treatment! Yipee! The clinical coordinator almost gave me a hard time and had to check to see if they could "accommodate" me. I didn't get crazy with her just yet because I wanted to see if she could make it happen. Well, she did so I didn't have to go all mama bear on her.

It will be a big day tomorrow so please send us positive oxygenated thoughts and prayers!

Home

Dear God,

Thank you for this day!

Love,

Shauna, Manny, Gabe, and Christian

What a big day! It was Christian's very 1st birthday and we are so thankful that we made it here. I'm so proud of how far he has come. He blows me away every day. But the day didn't come without tears and reflection about the past year. I see him and I wonder what he'd be doing if the accident hadn't happened. I wonder how much fun he would have had diving into his first cake. But I have to go back to what is now. And what is now is a little boy who struggled to get where he is and who is still fighting to make sense of everything and heal. A little bit more of him comes back everyday. And I know in my heart there will be a birthday, maybe even the next one, that he will be diving into a cake and running around with his Converse high tops.

Manny and Gabe came to Phoenix today and it was so great to see them that I didn't want them to go. Manny brought a birthday cake for Christian and they both brought Spongebob Squarepants cards (that was the theme of the cake, by the way). Gabe wrote, "Keep Fighting!" in his and I lost it right then and there. That, on top of Manny's card to his son...I couldn't hold it in anymore. Being a part from them is hard. We aren't a family that does a whole lot separately. But while they were here we watched Lemony Snickett's A Series of Unfortunate Events and Farris Beuhler's Day Off. Gabe had never seen Farris Beuhler so we had to watch it. And the Respiratory Therapist came in while we were watching it and asked if the movie was any good and if it's new. What!?!?! Are you from Mars, lady? It's a classic! Then we played a long game of Uno, which I won. That's right! We sang happy birthday to Christian and had cake. It was a nice time. But I still didn't want them to go.

Christian in his "Birthday Boy" shirt!

Asleep after all the birthday madness.

After they left, Christian and I did some stretching and joint compression. I sat him up for a while and laid him against me on his tummy, which he relaxes right into. He even fell asleep while laying on me. All the stretching and range of motion activities usually tires him out so he's sleeping peacefully right now. We got a TON of toys to hang all over the walls and crib that will wake his senses up. So he's had a busy day. A big day.

Mommy loving all over Christian. I can't get enough of this kid!

I didn't really watch all of Series of Unfortunate Events, which is a movie I love, but I woke up at the end just in time to hear a message. The very last lines of the movie, and I can't quote exactly, but they hit home. It goes something like this: A series of what seems like unfortunate events may be just the beginning of a journey...and no matter where we are as long as we have each other, we have our family and we are home. Today we were home.