A Word On Joy

I’ve been thinking a lot about joy and happiness lately.

It all started when I read another blog entry about parents of special needs children finding joy in the things they can. Then over the Thanksgiving holiday I remember thinking of that blog and feeling such happiness and joy with my children and husband there. It was so far from where we could have been had things not turned out the way they did after Christian’s accident.

I then went to church last Sunday and the sermon was about joy during the holiday season. The pastor spoke about finding joy in the season and what it means. He spoke about finding joy despite the hard times that everyone is going through. And then something really stuck with me – I can’t quote him verbatim, but it went a little something like this…


Claim joy as your own, not to deny whatever horrible things you are going through. Claim joyous moments to defy the horrible things you are going through.

It stuck to me and stuck hard. It's easy for me to laugh. It is easy to find joy for me because it’s comfortable. I’m not saying I walk around with a smile on my face all the time, ask my husband. I definitely have my moments of breakdown – I’m 9 months pregnant, I think I’d be weird if I didn’t. But looking back, I think I’m more joyful and laugh more and I’m happier in a sense than before the accident. Not by accident, but because I’ve made a choice to do this and to try and live this way every day. I'm not great at it, most days I'm truly joyful and I think my laugh is even louder now than before. But some days I have to fake it 'til I make it.

I do look at pictures of myself from before the accident and I think, “There I was, untouched by tragedy. Completely unfazed, taking every day for granted. That girl doesn’t even know what’s coming.” It’s a sadness I feel when I look at that person because I’m so jealous of her innocence and naivete. But, in a way, I’ve found a different kind of happiness. The kind you have to try for and “claim as your own.” It's a conscious choice to claim joy as my own so I NEVER take for granted a single moment with those who I love again.

Anyway, I wanted to share things we do when we’re at home. I call this Mommy therapy. These are things we do at home and little things that help Christian.

These are some of my moments of joy...mismatched pajamas included.
This is called a Tumble Form Chair. It helps Christian's posture and alignment. And since he's been moving his head back and forth, this is the best position for him to practice this.

To the left! To the left!

(For all you that don't know, Christian's head lives on the right side and he's just recently started moving his head to midline and to the right.)

Recently, I've been sitting Christian upside down with his legs up at a 45-90 degree angle. This is to help flatten his back when he gets in his "archy" moods. It also relaxes his legs.

The silver pom pom to the left is really good for a couple of things. It makes a sound that catches Christian's attention giving him auditory stimulation. It is large, shiny, and reflective which stimulates his visual abilities. And it's a good tactile stimulant. Christian can dig his hands into it or we put it over his legs and he'll move his legs against it. It's a good tool all around.

Possibility

Christian in his Thanksgiving attire.

Thankful doesn't even begin to cover it.

I am so thankful that my beautiful Christian is here to celebrate Thanksgiving. I did most of the celebrating (sans alcohol) but it was such a sweet Thanksgiving. I feel overwhelmed by gratitude. It was a very real possibility that Christian wouldn't have been with us. I thought about that day. It still weighs heavy on my heart. But I have this day and every day following the accident to be thankful. And this was THE BEST Thanksgiving I've ever had. Christian survived and he's still surviving. Our family is surviving right along with him.


I spent the first part of the day just hanging out with my boys - Manny, Gabe, and Christian. There were smells of blueberry muffins, sounds of the Macy's Thanksgiving Day Parade in the background followed by NFL football noise later in the afternoon. And as if to make this day even sweeter, Christian was on it! He was fully moving his head slowly back and forth from left to right. He was focusing on us when we spoke to him. He looked good! It was like a new Christian - just proof that God is still working His miracles on Christian.


And later in the afternoon we ate Thanksgiving dinner with family and it just didn't seem right that Christian had to be laying on the couch while we enjoyed dinner. So I picked him up and sat him on my lap. All day he seemed really active with his mouth and tongue and that's a queue to look for when Christian's ready to taste by mouth (although, we've already given him tastes - bad mommy). But at the dinner table, while Christian was on my lap I put a little mashed potato on my finger and brought it to his lips. He moved his tongue forward and tasted the mashed potato. He then started moving his mouth and tongue in a sucking motion to move the mashed potato back through his mouth to his throat. And then he swallowed. We tried a little more and then we tried some yams. I can't say he was as enthusiastic about the yams but he continued to be consistent with the mashed potatoes.


Now I'm not saying that I fed him a bunch. I just fed him a little bit (maybe a pea size amount) and I'm saying he ate it. He ate some mashed potatoes from Thanksgiving dinner. He participated, he responded to eating queues and that was just one more thing to be thankful for. I know in my heart he will eat by mouth again. And I know it will be soon. But today, I'm thankful that my baby son ate some Thanksgiving dinner.

I could write a book about why I'm thankful on this day and for what. But I'm sure nobody wants to read about every teardrop and every kind word I'm thankful for.


So here are just a few random things that need special thanks...

I am thankful for the joy we've experienced in this last year, both before and after the accident. I am thankful for all of the experiences we got to have with Christian before the accident and just about every teeny tiny bit of progress after the accident. I have learned to find happiness and joy in the smallest of things. And even though we had a tough year, I'm thankful we have still been able to find laughter and happiness wherever we can get it.


I am thankful for all of the internet moms I've "met" simply because our kids' paths were similar. I wish I didn't have a reason to know them. But I do have a reason and things would be so much different if I didn't have them for advice, a sounding board, a check in, a shared experience, or a celebration of a milestone. It's about feeling understood, like we're not alone, and like there are some answers out there where we were told there were none.


I am thankful for Christian's trach. Yes, I said it. I still have a bitter taste in my mouth about how it was brought into our lives - that probably won't change. But I'm thankful for his trach because it gives him opportunity to breath. If he gets sick, there's just one extra way to keep him clear. He has remained relatively healthy with ZERO colds, sicknesses, or lung and breathing issues. Things like breathing do not get in the way of his progress because the trach allows him to breath clearly. This does not mean we won't be getting it removed as soon as he's ready. But I do have appreciation for this little tube that helps Christian breath just that much easier so he can work on other things.


I'm thankful that I've been exposed to true and genuine human kindness that I didn't know existed. The generosity of strangers has opened my eyes to what I really have to be thankful for.


I'm thankful for my faith because it is my faith in God, sometimes just that alone, that has gotten me through this last year.


There are no guarantees or promises in this life. But there is possibility. And for that I am thankful.

What it's really all about.

My beautiful, handsome boys!

Daddy and Christian

Vitamins and Meds

It feels like a Friday to me for some reason. Maybe because it was such a good day? It was as if this day was meant to be a good one.

First, while taking Gabe to school, there was hardly any traffic. I was wondering...is there a parade or a holiday I don't know about? Well, yeah, it's called Thanksgiving and apparently everyone's off for the whole week. Fine by me!

Second, we were on time to everything! Whaaa? I am perpetually 15 minutes late to everything in my life. And today we were on time - even early - to all of our appointments. This is absolutely unheard of.

Third, Christian didn't throw up this morning. That is a prediction of a good day.

We also had our cranial sacral appointment with Dr. Peters, who is awesome, by the way. His practice is in a home-like structure out in the middle of the dessert. I say home-like because he doesn't live in the building but I think he lives on the property. Anyway, the room Christian gets treated in is so relaxing. It has skylights and a big window. Outside of the window are trees, bird feeders, and a fountain. Birds are always right outside the window, bumping into the window, flying around...it is so serene.

The room itself has beautiful bible verses hung up all over mostly referring to faith and healing. I could probably sit in that room for a while and then just fall asleep. I almost did fall asleep this morning.

The appointment went as it usually does. Dr. Peters started working on Christian's neck and base of his skull and Christian started to fuss and cry. This is usually the case. But the most amazing thing happens - Christian will cry and cry and cry and it can get pretty intense. So intense that I start wondering if everything is okay. But then all of the sudden there is a release. Christian will stop crying and his entire body relaxes from head to toe. You can literally see when that moment of release happens. It is Dr. Peters' theory that once the body is no longer locked up, the rest of the body has more of a chance to function properly. Dr. Peters and his staff are the most lovely people and they really love and care for Christian. I believe going there really helps Christian and he has helped a lot of children in this town.

The next appointment was HBOT and then a follow up EEG. The neuro wanted a follow up EEG isolating just the area of the brain where all of the activity was coming from after the initial increase in meds. I was a little nervous about this because if it didn't show that the seizure activity had calmed down, the neuro probably would have ordered an increase in meds or an additional medication. This is the OPPOSITE way that I want to go.

Well, the area showed no seizure activity! It was just a snapshot but it was good enough for me! I was afraid to ask the tech what a normal brain wave would look like for a "normal" person compared to Christian because I was afraid he'd tell me something I'd rather not know. But I asked anyway. And he said it actually looked pretty close to a normal brain wave. It's only one isolated area of the brain and that does not discount the activity while sleeping or other parts of the brain but...I'LL TAKE IT! The neuro said that since things looks like they calmed down, no increase in meds.

In a nutshell - EEG still confusing, brain still confusing, seizures REALLY confusing, but no increase in meds. The neuro did suggest still adding another med for his neck because he's constantly turned to the right. But if we're experimenting, I'd rather experiment by taking all the seizure medication away to see what happens. But that's only if we're experimenting.

I've also added a few new vitamin supplements to Christian's regimen. I'm giving him Magnesium, Vitamin D, and Omega 3 Fish Oil. Since adding the supplements I've seen less throwing up, more sound sleep at night, and an overall well being. He seems more snugly and rested to me in the morning. I'm sure snugly is a medical term. No, a doctor didn't advise me. I consulted with other moms and their experience. I was tired of searching for a medical professional that knows anything about vitamin supplements. Besides, there's no money from drug companies to learn about vitamins so why would they learn anything about silly things like vitamins? So I took matters into my own hands.

I do want to say thank you for every single comment I get on this blog. Each one of your words of encouragement and personal stories stays with me and helps me get through the difficult situations and difficult days. Thank you so much for sharing this journey with us and offering a part of yours.

Seizures-Schmeezers

I got off track. I lost focus for a second. From the beginning I had planned on moving forward, trusting in God first and all others second. I vowed I wouldn't pay attention to EEG's and MRI's and Neuro's and I would just let Christian lead the way.

Well I was given the test and I didn't get a very good grade. I need a retake!

It turns out that what I thought were seizures didn't even register on the EEG as a seizure. Wait, it gets better. Christian's EEG did register a single 8 second seizure, but it was while NOTHING was physically present (i.e. body twitch, jumping or rolling eyes, shaking, etc). Everyone say it with me...WHAT THE ****?!

It was then that I realized that I'm not here to figure this out. It doesn't make sense. A person can have a full on convulsive seizure and absolutely nothing will register on an EEG. And the opposite is also true. The problem with me is that I need to understand things to come up with a plan. And this is not meant to be understood. And now I've put too much energy into worrying about something I can't understand or control.

More fun facts about seizures...seizure activity isn't necessarily a seizure. It means that brain waves are disorganized. Well, duh! He has a brain injury, what else would they be? And he gets this disorganized activity while sleeping. His transition to being awake is fine and while awake there is no where near as much disorganization. Oh yeah, and EEG's only tell us half the picture.

We increased the medication and the doctor asked if I could tell any difference. Well now that I know that what I thought was a seizure didn't register but what was a seizure didn't physically manifest, am I really the best person to ask?

Okay, so I'm done. Enough energy has gone into dissecting this issue and trying to understand. It's now all gibberish to me and I'm back on track. We can fool around with medication, although I've got a few other things I'm looking into. But I will not let this take us down or hold us up. Christian is on a mission. He's making steady progress and despite having to go under general anesthesia, getting his tube replaced with a Mic-Key button, getting an EEG, messing with his meds and the side effects that come from messing with meds, and being mildly congested all within this past week, Christian is still making progress. He ended this week with a great therapy session and he worked HARD. This is just a reminder that he is working hard to recover and how dare I loose focus.

I'm focusing on Christian. He'll show us what he can do, he shows us time and time again. God has given him strength to pull through all the obstacles that have come about. He's given Christian strength and opportunity to keep going and I'm privileged enough to witness this miracle. So to the seizures, seizure activity, EEG gobbledy gook I say - BAH! We're over it. This pity party is shut down.

There will be more progress and there will probably be some setbacks. It's inevitable. We'll get through it and we'll get Christian through it. Sometimes this process is excrutiatingly...painfully slow, but it's moving and I don't want to miss it.

God heals.

Craptastic

Seizures.

Crap.

I can hear the collective sigh. It's not a good sigh. It's the 'Man, that sucks" sigh. In this collective sigh would be mine that stands alone and it's one of deflation.

I have noticed these flickers in Christian's eyes that make him look like he rolls his eyes to the right. More recently the episodes have gotten stronger. So much so that when Christian is in therapy, it will jerk him out of proper alignment. It's about a 5 second jerk and he's back with us. It started to concern me even more when he started to whine after each episodes and the episodes would happen in clusters and seem to hinder new things he was trying like turning his head and trying to focus to the left.

So I requested another EEG to see what was going on. I don't want my son on more meds but I certainly don't want to hinder his progress either. We did an EEG yesterday.

It is said that EEG's give more information and a more accurate picture while the patient is asleep. Luckily, Christian fell asleep and we were able to get episodes happening while he was awake, as well. As the EEG was running, I was able to consult with the neuro as she was watching the EEG come across her computer. She confirmed the EEG while Christian was asleep was...messy.

There was a lot of seizure activity while he was sleeping. She showed me the normal brain wave activity he had and the abnormal/seizure activity he had. It was all over the place while sleeping. Of course, while awake the EEG looks calm in comparison. Hardly anything to write home about. This is confusing to me because while sleeping there are no stimulants. He's completely calm, no jerking, no flickering eye lids, he's just peaceful. Now that I know this I feel like putting him to bed is sending him to craziness. Furthermore, it's not necessarily that the EEG is or is not worse because the last EEG was given while awake, too. So we didn't get any of the high activity on that one either.

The good news is that Christian is still making great progress so these seizures aren't really holding him up (that we know of). I mean it could always be that with the absence of these seizures, Christian could progress even faster. But with the information we have now, he seems to continue progressing at a steady pace even with the seizures happening. But who really knows what's happening in there. Even the EEG is only an estimation of what's going on. I just don't want him to be in pain.

The neuro was concerned so she suggested to increase meds quite a bit to what she still considers a low dosage of Keppra. We've done that so far and I haven't noticed any difference or decrease in episodes. But what I have noticed are some lovely side effects - sleepiness and irritability. She said it could take a couple days for the increase in meds to work or could take a couple weeks.

Obviously this is not where I wanted to go. But it's not under my control and that's what pisses me off. I feel like I've failed, like going and going and now this. And now I'm faced with the choice of having a zombie child with no seizures or a child who is present and alert but having seizure activity.

I need alternatives. I cannot and will not except that it has to be one extreme or another. I have heard of natural vitamin supplements that help in eliminating seizures but this would require experimentation. Reducing or eliminating one med and replacing it with a supplement is the only way to see if this will work. This is my son's life, though. It's not something I can play around with until I get the right cocktail.

Deflated is right. I'm not really sure where to go for answers because seizures and brain activity are not an exact science. They can't say anything is definite. They can't say this isn't part of his recovery. It's all a big guessing game, including what meds and how much to give him.

I'm trying to tell myself that we've had relatively no big setbacks and only progress so we were bound to have a hiccup sooner or later. And I prepared myself ahead of time so I wouldn't be so shocked. But I was still disappointed because now we have another issue we have to put energy toward instead of something fun like physical therapy or therapy toys.

So now I'm on the hunt for alternatives. If anyone has a friend who had a sister who's cousin's neighbor tried something that worked, please share. I'm open to anything.

Mic-Key Has Landed.

Sing along with me everybody!

M – I – C – K – E – Y M – O – U – S – E

Er, I mean…B– U – T – T – O – N !!!

Christian is FINALLY the proud owner of a Mic-Key button!

I’m so glad this is finally done. And this is what we decided and how we came to our decision on the whole fiasco.

We had decided to request that the doctor pull the tube out with Christian conscious but in the operation room so that if there were any complications, as suggested, he could be given emergency surgery right then and there. The way things were explained to us is that the tube he has is the original tube and has a flat disk on the inside of the stomach to keep it from falling out. Because of the flat disk, the doctor has to pull extra hard so the disk will collapse and come out of the small stoma (hole). There have been a few instances with babies like Christian that if they tighten while in pain, the stomach will rip away from the wall of the abdomen. This causes an emergency situation and possibly a scar if it has to be repaired.


But…this all revolves around “the possibility” of something going wrong. That’s what brought us to the decision to ask if she would attempt the routine procedure of pulling out the tube with him conscious (which happens everywhere, every day).

So because one of the issues was that Christian was likely to be tight when uncomfortable, we decided to have him attend his OT therapy so he could get all stretched out and relaxed before the procedure/surgery was scheduled. When we arrived at the appointment, I suddenly had a change of heart. I felt like I was intentionally putting my child through pain to avoid anesthesia and I didn’t know which was worse. I read the risks of anesthesia – respiratory distress, brain damage…death. How as a mother do you decide what’s best? Was I just trying to be disagreeable because of what happened with the trach? Probably, a little. I just don’t ever want to be bullied into having another procedure done or giving another unnecessary medication to my son again.

My husband did reveal that he was more comfortable with Christian going under general anesthesia for the procedure so he wouldn’t feel any pain. I then remembered that Christian has already been under anesthesia. It was when he got the g-tube and trach and he did fine with it. Of course now he’s a lot more reactive and expressive with pain or if something is bothering him.

In the end we had all of our questions and concerns addressed by the anesthesiologist, the doctor, and the nurse and we decided to give him the general anesthesia gas through his trach with no IV’s unless necessary. As we were talking Christian started to drift off into his morning nap. He had been so aware and paying so much attention this morning. He was looking to the left and turning his head to follow his gaze. I didn’t want to lose any of that when he woke up from surgery. I told my husband, “Why can’t they just pull it out now really fast while he’s asleep?” Only half joking.


We sat down in the waiting room and I was hungry (big surprise) so my husband went to get me something to eat in the cafeteria. We hadn’t been sitting for longer than five minutes before the doctor came out and told us everything went well and Christian was already in recovery. It was that fast. Half hour later we were told he was awake and we could go get him. I was so afraid he’d be groggy and wouldn’t be that alert little boy I left on the hospital bed. But his eyes were huge! He was a little off focus but he looked like he was ready to go! We dressed him and took him home with his button intact. He’s been fine since then with the exception of a little irritability. I’m just happy it’s finally done.

And on a side note, none of the doctors or nurses there were familiar with hyperbarics! It just surprised the hell out of me. I know it’s new and this is part of our lives now so we know the ins, outs, ups, and downs, of it. And I don’t expect the general population to know about it at all. In fact, I’m happy to talk about it all day long. But I was just floored that not one medical professional in that room knew ANYTHING about it. I had put down on his medication received list that he was receiving oxygen therapy.


The actual surgeon said, “So tell me about this oxygen therapy.”

I said, “Hyperbarics.” Thinking she’d surely know what I was talking about.


She looked puzzled and said, “And what does it do?”

Wow. She should read my blog.

Not condoning violence but...

I could have punched the pediatric surgeon in the face today.

Okay, not really, but she really pissed me off and the more I think about it the more mad I get. Why is it so hard to get a frickin Mic-Key button? Why is this no big deal for everyone else but a huge saga for Christian?

Let me go back to July 23rd. Christian gets his g-tube surgery so he is able to eat. Fast forward to now – he still has the same tube. We were originally told we had to wait 8 weeks and then we could get it replaced. So I made the appointment ahead of time. 8 weeks goes by, I go to the appointment and I’m told it’s just to measure for a Mic-Key button, which is a small button that is an entry to the stomach so we can get food in there. We order the button from the home health care company and…Surprise!...it’s on back order. Of course it is. Tube stays.

We finally get it! I make the appointment to finally get the button installed. Manny and I go to the appointment, the doctor comes in and tells us she’s had problems with his type of tube. She’s had 4 or 5 episodes where when she pulled the original tube out it separated the stomach from the inside wall of the abdomen and had to do an emergency surgery which left a big scar on a few kids. WTF? These kids had spasticity (tightening) and Christian has some spasticity when he’s in pain which could cause this emergency to happen.

Let me back up and tell you how they take out the tube to place the Mic-Key button. They yank it out. The end.

So the doctor then proceeds to tell me she wouldn’t be taking his tube out in her office but would instead schedule an outpatient surgery where they will put him under general anesthesia. Do I have to say it? W.T.F!!! I am so pissed for the following reasons in the form of questions:


1. Why couldn’t they just put in the Mic-Key button upon the initial surgery? From what I’ve heard, this is a common practice. No tube involved! I asked the doctor and she said it’s just about preference. They just don’t do it that way at that office. That’s it? There’s no other reason that’s actually a good one?

2. What is up with this doctor? She put that tube in and gave him his initial surgery. This tube in question that’s supposedly responsible for this stomach wall separation stuff. She decided to use it because that’s the tube she chose and that’s “the way they do it.” So really, this is all her fault as far as I’m concerned.

3. Significantly less important but what’s up with not calling me before I pack up Christian and head to the appointment? You saw the type of tube he has at the last pointless appointment. This is the SECOND time I’ve gone to an appointment that doesn’t get us ANYWHERE! If you can call me to give me a reminder of the appointment, why can’t you call me to tell me not to bother coming since you won’t do the procedure anyway?!

4. Is this doctor even competent if this keeps happening? I’m feeling more and more like maybe I should look for another doctor.

5. Doesn’t she know he has a brain injury? Or does she care? Putting him out for a simple procedure really makes me nervous. Really, really nervous.

She just kept apologizing for us having to come to the office for her not to do anything. Something just isn’t sitting right with me about putting him completely out. This will be under general anesthesia, which goes where? Right into his fragile little brain. I mean I don't want his stomach to get torn from his wall, but what are the alternatives?

I think the thing that makes me the most angry is that it's like a flashback of the trach situation. It's a doctor telling me that this is how it HAS to be and there is no other choice when there are plenty of alternatives.

So, the tube is still there.

On a more positive and far less violent note, Christian worked hard all week holding his head up all by himself while laying flat on his tummy, propped up on his elbows. Wanna see?

Christian holding himself up but rightfully angry about the annoying flash from the camera.

Still not overjoyed about having to hold himself up, but still doing it anyway. All by himself.

Therapy time! More practice holding that gargantuan head up.

Awesome Superman tattoos from Cici's Mom. I put one on, too, but it wasn't quite as cool as Christian's.