See Christian and Lola's ISR video!

Thursday, December 31, 2009

A Deep Breath

Raise your hand if you're ready for 2010!
Now raise your hand if you're even more ready to say goodbye to 2009!
I am so ready to say goodbye to 2009. My husband read my mind the other day when he said it was the best year of our lives and the worst year of our lives. We are in such a completely different place than we were a year ago. It's a completely different life we're living in almost every aspect.

I am so excited about 2010. I know it's just a date. Really, it's pretty relative. But to me, January 1, 2010 will signify new opportunities, new revelations, plans, possibilities, and it feels like a fresh, untarnished, new beginning. I've never been this excited about the changing of a year.

I'm not even a big celebrator of New Years Eve. I think going out on New Years Eve is highly overrated. I'd rather stay home with my kids and celebrate with them sitting right next to me. And I get to do that this year. We also plan on celebrating by our traditional ordering out of Chinese food. It's just a thing we do.

Today was such a great day! I met up with someone from my August Moms group and we went to the zoo. It was the perfect day to do so and I packed up both Christian and Lola and we made our way there. I really wanted to do it just to see if I could handle navigating this world with two babies all by myself! Christian was nice and warm tucked in his stroller with his Elmo slippers and Lola was wrapped up in my Moby wrap. And it went great! Christian was minimally cranky, mostly because he was tired. So he slept. But he tolerated the trip to the zoo well. He needed to get out of the house and into the fresh air for a while. In fact, thinking about it, he did really well today! Lola just slept until the very end when she lost it. I'll tell you what, little girls go from 0-60 in just a few seconds.


Christian bundled up at the zoo, a little annoyed by the brightness of the day.

Not only did Christian's Elmo slippers keep his toesies nice and warm, but they were a big hit with the little ones circulating the zoo.




Mostly I felt so much like myself. And it felt so great to be able to do mommy things with another mommy. I used to take Christian to play dates and tumble classes and it was so much fun. I LOVED stuff like that. We obviously haven't been able to do anything like that for a while. I was seriously on cloud nine. I watched all the other kids enjoy the zoo and I saw all the other moms strolling their kids around. I felt we were different because my child is now different. But at the same time, I finally felt like a normal mom again. We all have our struggles - some moms were wrangling kids together, some moms were holding cranky kids, some moms were showing their kids the animals, and this mom was trying to make my kids comfortable and happy during the whole experience. It was the same, but different. But it was nice to feel that "sameness" again. The only way to explain it is by saying it was such a nice, deep breath.

So a virtual toast to more "Mommy Moments," new beginnings, fresh starts, and deep breaths. I hope and pray that 2010 is much better for everyone, for I know that we are not the only family that experienced triumph and tragedy.

There is so much we are planning for 2010 and I can't wait to see it unfold!

Have a happy, hopeful, wonderful New Year!
Friday, December 25, 2009

The Wise Words of Linus



My feelings about this Christmas can best be summed up in a quote from Charlie Brown in Charlie Brown's Christmas.

[Charlie Brown and Linus stop at a wall on their trip to the pond for ice skating]
"I think there must be something wrong with me, Linus. Christmas is coming, but I'm not happy. I don't feel the way I'm supposed to feel. "
This was the case until Christmas Eve when all the presents were purchased, wrapped, and under the tree. Yes, I had a lot going on. But I also couldn't shake that grinchy feeling. I was trying to focus on the meaning of Christmas and how thankful we are for having our children there with us to celebrate. I will admit, it was hard. It was hard not to picture Christian and what it would have been like to see him tear into his presents, only being interested in the paper and boxes rather than the presents. True, it could have been a very sad Christmas for us not having Christian there with us, but those what if's still haunt me sometimes if I'm tired and let them creep in. It also didn't help that Christian had been particularly cranky and irritable the days leading up to Christmas.
As soon as Christmas Day hit my fog was lifted! It was time to be with family, and really celebrate what Christmas is all about. Christian woke up in a good mood and was really calm and relaxed, which is a gift in itself after a couple of days of a tight, cranky baby. I think a fog lifted for him, too, that day.
Now I've prayed consistently every night, and I know my husband has prayed consistently every morning for Christian to smile. On Christmas Eve I told God that all I wanted for Christmas was a smile from Christian. So on Christmas I put Christian in his chair and scooted him up to the table while I made cookies and peppermint bark. I started talking to him and playing with him, pulling out all the stops to get him to smile. He looked at me...and the left corner of his mouth lifted in a half smile! The best half smile I've ever gotten in my life! I thought I might be imagining things so I tried to make him do it again before I went and told anyone. I was unsuccessful, but I know those smiles are in there now and I know more are coming. It was by far the best Christmas present I could have received.
Christian was also particularly entertained by Christmas lights.

Christian grabbing at the tree.

More excited by the lights on the Christmas tree than the presents underneath.

And so I leave you all with my very favorite monologue by Linus and his perspective on the meaning of Christmas.

"And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, 'Fear not: for behold, I bring unto you good tidings of great joy, which shall be to all people. For unto you is born this day in the City of David a Savior, which is Christ the Lord. And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.' And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, 'Glory to God in the highest, and on earth peace, good will toward men.'"

[Linus picks up his blanket and walks back towards Charlie Brown]

"That's what Christmas is all about, Charlie Brown."

Tuesday, December 22, 2009

Thanks...But No Thanks.

We visited the orthopedic surgeon yesterday.

That visit can be summed up with: Thanks, but no thanks.

The orthopedic surgeon reviewed Christian's x-rays of his hips and just as I suspected...no hip dislocation. But, he's at risk.

This is what I think about the statement of being "at risk:"

Christian, along with most special needs children is at risk for many things. He's at risk for getting lung infections and pneumonia, he's at risk for scoliosis, he's at risk of never talking, walking, or eating by mouth again. I believe he will do these things, but he's at risk for not doing these things if he doesn't get the therapies and treatments he needs to help him progress.

But this isn't really what we're centering his life around. He's at a higher risk for many things, but that isn't anything to start planning surgeries, cutting ligaments, and arranging for lower body casts.

Yes, I said surgeries, cutting, and body casts. In fact, it's not really what I said, it's what the surgeon said. He suggested cutting Christian's abductors which is the muscle on the inside of his thigh near his groin. He also said we should cut his Achilles tendon. And this will put him in a lower body cast for 4-6 weeks.

Ummm...I don't think so. All of this assessment was based on one appointment with Christian. He moved him around and, of course, Christian was resistant at first. But he has full range of motion and is able to move, get his legs in all different pretzel maneuvers, and his foot can go past 90 degrees while weight bearing. The PT didn't even think he needed Botox injections at this point. Does the surgeon see this? Nope. He sees an uncomfortable Christian after a 25 minute car ride, of which he despises, who doesn't move on command.

I kept wondering to myself...why does this man keep suggesting surgery? I am such a genius. DUH! He's a surgeon! This is what he does. He did say that the surgeries he's suggesting are preventative, rather than necessary at this moment.

So my thought is, again, thanks, but no thanks. We went to find out if his hips were dislocated, and they're not, just like I thought. If a surgery ever becomes necessary, that is when we'll do it. But for now there is more nonsurgical healing to do.

I've been stretching Christian and exercising him as we normally do. He's no longer in pain and he's back to normal. So the beat goes on.

ETA: It is Christian adductors that were suggested to be surgically cut. This is the muscle inside his thigh close to his groin. The doctor also suggested his heel cord which is in the area of the Achilles Tendon.
Saturday, December 19, 2009

Her Name Was Lola!

Lola Magdalene
12.14.09 2:44PM
7lbs. 3oz. 20in




Christian has officially joined his big brother, Gabe, as a member of the Big Brother Club!


Christian literally fell asleep while taking pictures with Lola. He started trying to suck on her nose, eventually. And, yes, he moved her headband over her eyes as he moved closer to her. Already teasing his little sister.


Lola arrived on Monday, December 14th at 2:44PM. She made her appearance after four hours of labor and fifteen minutes of pushing - my easiest labor by far!

The best part was that she was born in the same hospital, in the exact same room as Christian. It's the best room on the floor with panoramic windows over looking the city. The overcast, rainy weather that greeted Christian on his birthday also greeted Lola. But because she's a girl, she got a rainbow.

UMC Hospital, Lola's birthday rainbow on a Tucson winter's day.



Christian did well without Mommy for about 36 hours. He had his Nana, his Tia Maggie and Gramma and Grampa to help take care of him so he got tons of attention.

Since Lola's arrival, we've been trying to get back to normal. Christian seems to respond to Lola's crying as he'll look around or even start to cry himself. When we place Lola next to him, he also seems to be aware that there is another baby next to him, but he can't quite make sense of it.


Christian feeling Lola's head for the first time.


But I can tell you that when I see my kids together, I just want to melt. I fall head over heels in love with them again and again.



My sleeping beauties.




As far as Christian's leg issues go, he's fine now. I've stretched him out, put him in sitting positions, moved him around, and he's not having an issue any longer. I do have an appointment on Monday (soonest we could do, they wanted to wait until after the holidays) with the orthopedic surgeon to figure out what exactly the x-rays are saying. I will keep everyone posted but it's now just for more information. I'm not too worried, but my PT would really like me to get clearance for weight baring so that we can go forward without worrying about any possible damage. Makes sense to me!
Sunday, December 13, 2009

Crack

Last week was a tough week on Christian. He was (and still is) teething with multiple teeth, including molars. This caused more drool, more secretions, and more runny noses. But, in true form, Christian took it like a champ without too much complaining. We cancelled all of our appointments for the week just to give him extra resting time.

Then there was Wednesday.

On Wednesday night, I was stretching Christian out as we do every night. In a sitting position, Christian does really well. His hips aren't really that tight at all. He's able to sit upright with support with very little tightness or resistance and he tolerates it for a while. It's his knees and legs that are tight. However, when he's in a sitting position, his legs loosen up and he can sit cross legged and with knees side lying to both sides.

As I was stretching him out, I had him in a sitting position with his back against me. I grabbed his right leg and pulled it in at the knee. No resistance, just a little tight but no where near as tight as it's been before. Then I hear....a crack.

It was so scary. I laid him down to see his reaction and his face turned red and he started crying. For the next hour I observed his knee to see if there were any changes. Nothing. No redness, no swelling. I put him to bed and he slept like he normally does. The only thing different is that his right leg was no longer tight in comparison to his left leg. It laid in relaxation like a regular leg, even bending at the knee. I considered taking him to urgent care, but wasn't sold on that idea due to his cold and exposing him to yucky things. And there were not physically visible signs of injury, otherwise I'd have taken him in a heartbeat.

When he woke up the next morning I noticed his right leg was really sensitive. He cried if it was moved or during diaper changing. It still looked no different, no redness or swelling. But it was obvious that he was really bothered by it. We cancelled OT on Wednesday, but asked the OT about it. She wasn't terribly concerned, but told us to ask our PT that comes to the house to look at it. Friday our PT came over and examined his legs. She didn't notice any leg longer than the other, signifying dislocation. No changes in the knee, but the reaction seemed to come from rotating his leg in his hip. She suggested x-rays immediately. So we got x-rays Friday.

Christian's pediatrician called on Saturday morning and said the conclusion to the x-rays according to the radiologist was "Probable Dislocation in both legs." I ask, "Both legs?" and "What does probable mean?" Apparently there was a note that the angle of the x-ray was not a common angle. In other words, because of an abnormal x-ray, it needs further review, another x-ray, or an ultrasound.

I have different feelings about this:

1. I don't think both legs are dislocated. If any leg is dislocated, it's the right one and that happened Wednesday.

2. If both legs are truly dislocated, this had to have happened a long time ago. Maybe when Christian had more tone. But that doesn't explain Wednesday's crack.

3. While this is a minor setback in terms of therapy, I'm more interested in what this means. If both legs are dislocated and they are repaired, could it mean he has greater feeling and use in his legs? Furthermore, as I mentioned, his right leg is acting more like a "normal" leg since the crack. So what does that mean?

Orthopedic surgeons...I have questions so get ready.

There's only one problem. I'm having a baby tomorrow. Yup. I'm going in tomorrow to have Christian's little sister. So I'll be useless for the time being. I'll be making the appointment for Christian in the morning in the hospital, but I can't take him. Daddy has to take him so control freak Mommy can't go. Grrr! Darn child birth! The appointment probably won't be immediately because from what my PT said, there are no emergencies in ortho surgeries anymore. We'll see how it goes!

The good news is that the sensitivity hasn't gotten any worse. He seems to feel just fine and dandy, his focus and response is getting better and better and he's been particularly active with his arms as he reaches and feels. His overall mood is great. The only time he gets a little mad is just for a minute when his right leg is moved. But I've changed his diaper and I don't get nearly the protesting that I got before. I would say he's feeling much better, but I've also been careful not to push him at all until we know what's up. So I'm interested to see how this leg thing plays out.

As I mentioned above, I'm going in to have Christian's little sister and I'm so nervous! Excited, but nervous. Please pray for Christian and his little leggy (or both of them). Also, please pray for a healthy baby and healthy mommy when all is said and done.

See you on the other side!
Wednesday, December 9, 2009

Understanding

I've finally arrived.

I'm at the place in this journey as a new special needs parent where I'm in search of understanding. And it's hard to find.

I do love my friends and family, and as I'm learning how to navigate this new way of life, I try to share everything I've learned as I go. That's part of the reason I have this blog. But I'm finding that some will "get it" and some won't. Why? Because they aren't as vested in this journey as I am. They don't have as deep an interest in it. Not that they don't love Christian and want the best for him, they just don't understand. And when they leave our presence or get off the phone with me, they don't have to think about it anymore. Not their fault, not at all. But this is where I've arrived, it's where we've arrived. The realm of understanding how a child develops has just splintered off and we are now on a foreign path that is difficult to fathom for most people.

I'm not mad about this at all. I accept and embrace this path because it's ours. I don't expect anyone to really understand unless they have a special needs child. It's like a secret club. And I can't say that I've completely given in to it or accepted it 100%. But as I see other special needs children or meet other parents of special needs children, I feel a connection, a comfort...an understanding.

No, I'm not mad. What I do find myself feeling is frustrated at the lack of understanding. My patience meter is running on low these days as it is, so beware. But how many times do I have to explain this treatment or that treatment? Do I mind explaining it on my blog, absolutely not. And those that follow my blog have some sort of understanding, at least. But people in my every day life who are trying to make sense of what this world is like for me have no idea.

They have no idea what it's truly like to love your child so much you bargain ridiculous things with God in your head just to test yourself to see what you'd be willing to give up. They have no idea what's it's like to love your child so much you would do ANYTHING for them and their healing. It actually becomes your career. I mean there's the obligatory "I'd do anything for my child," we all have as parents, but to live that day to day is a different story. To look at your child every day and think, "Okay, what will I do for my child today that will help him heal," is also an entirely different mindset.

"Are these treatments working?" - I believe they are. Which treatment, who knows? Who cares? Something is at work and I'm not willing to stop all treatments but one at a time just to find out.

"So did the doctor tell you when he would get better?" - No, because he's not a psychic. There is no date written in time that we as humans have privilege to. And I'm not concerned with "the moment" he gets better because we have to accept him now and forever. There won't be a "moment." It is a process. It is a journey.

I think the hardest part of this arrival into the search for understanding as a special needs parent is that I'm starting to realize that people might be scared of Christian. By this I mean, those that know and love us are reluctant to hold him or care for him because it's scary. They don't know how to hold him to where he's comfortable. They don't know what do to if he coughs really hard or sounds raspy. They don't know what to do if he's crying. So they'd rather not do anything.

This is where I get frustrated. Not taking into consideration that it took me months to learn how to take care of Christian, get to know him again, learn with him, learn for him, I expect that those around me are doing the exact same thing. Is this fair? No. But I find myself frustrated, saddened, a little angry that anyone would be afraid of him. He's just a baby and you just take care of him differently. What's the big deal?

It is a big deal. It's a huge deal that's just part of my everyday life and at this point I can take care of Christian with one hand tied behind my back. So why expect everyone else to be able to do that? I don't. But I do expect people to want to try. For example, my grandmother goes in the chamber with Christian. She mentioned that she's noticed a change and sometimes that change is greater from one day to the next than even one week to the next. She gets it!

My husband says I should be more patient with people. He's probably right. It's just that when people are what seems to be afraid of Christian, I feel like they don't believe in him. And you all know how I feel about people who don't believe in my child.

So I'll make a deal. I will have more patience, if I can receive more understanding. Okay?

Yeah, I know it's not that simple.

Understanding. It's going to have to be mutual. While I'm searching for it, I'm going to have to give it...along with that whole patience thing my husband was talking about.
Monday, December 7, 2009

Mean Molars

This weekend we didn't do much of anything. Christian has been congested. Not in the lower lungs but up in the throat and nose. I was wondering my brains out trying to figure out how in the world he could catch a cold because he hadn't been exposed to ANYONE that had a cold.

At one point he got really upset and was crying really loudly and his cheeks were flush. I put my finger in his mouth to feel his teeth and sure enough he has another big, fat, mean molar poking through! I figured it out...he's teething.

So he hasn't been 100% with all the drooling, extra secretions, and general irritability. But even so, it hasn't held him back one bit when it comes to his tone and therapies. In fact, this morning we went to our 2nd to last outpatient OT therapy and he did great! Relaxed, no increased tone, responding to voice by moving his head back and forth and searching for specific voices and sounds, grabbing for toys, far better spine alignment...he did great!

Hopefully, he'll feel better tomorrow!
Friday, December 4, 2009

Comings and Goings

I love Fridays!

I love Fridays (and Sundays) because everyone is home, there's always something good to eat, everyone catches up and spends time together.

I also love Fridays because our new (well, not so new anymore) home PT comes to visit Christian and she is stellar. Today she noticed a huge difference in his eyes and actually looking at things and people rather than looking through things. She said he was much more attentive and aware of his surroundings. I knew all of this, but I like when other people, especially therapists, offer these unsolicited findings.

Changes are coming...next week will be our last week of outpatient therapy. This is the therapy we have to physically go to outside of the home Monday-Thursday. Let me explain.

I'm about to have another baby (as if I hadn't mentioned this 100 times) and so next week is going to be our last week of outpatient therapy before I went on "maternity leave" from running around to appointments. I was planning on returning in mid January, but only to the OT program. However, we won't be returning to any of the outpatient therapies for the time being and this is why...

The PT we visit on Wednesdays is very young and just starting out. I haven't noticed too much effectiveness when she works with Christian. She does stuff I do with him at home and he's never really taken to her. He's always pretty fussy with her and so it was time to stop going. She also tag teams with the ST and the OT we see at home specializes in feedings anyway so we don't really need to go back to the outpatient ST at this point.

As for the OT program, there are two ladies we see. The OT on Thursdays is actually the main OT and she's going on maternity leave until April. No biggie, it wasn't too disappointing. The OT we see on Mondays and Tuesdays is actually an assistant (although she's been doing this work for like 20 years). The main OT told me the assistant can't work with Christian while she's gone because she's not "comfortable" with Christian being so "medically fragile" and not having as much of a medical background as the main OT. This was disappointing because we really liked her. Christian took to her and she was really knowledgeable. I don't know if this is coming from her, the main OT, or the policy they have. And I'm a little confused because they don't do anything with Christian except for their job - they work him out. They don't suction him, change his trach, etc. so it doesn't make much sense to me, but whatever. After thinking about it, it's for the best for the following reasons...

I was explained by the Early Interventionist that there is a difference between home therapy and outpatient therapy in that outpatient therapy is more of a medical setting following medical doctrine and criteria. While home therapists incorporate real life and family into their therapies. At first, I was like - whatever, I just want all the services. But now I've seen the difference and it's absolutely true. Our home therapists are A.W.E.S.O.M.E. They're "comfortable" with kids who are even on a ventilator, in other words, more "medically fragile" than Christian. They push Christian, they challenge him, and he reacts to them much differently, especially being at home. The outpatient therapies are more careful with Christian, they're not really into too much experimentation, and, in comparison, the home therapists are like, "Sure, why not!"

So this is the end (for now) of our outpatient therapy. I'm comfortable with this transition. When those therapists return, I can always call and make appointments, if needed. It's not off limits, but with Thanksgiving break being so calm for Christian without having to run around (he now hates bumpy car rides and cries when we have to go over speed bumps), I had a different perspective. He could use a break from going non stop, but this isn't over.

For the rest of the year, Christian will have two therapies a week but I'm arranging more in home therapy. I like the idea of having different therapists because different therapists bring out different qualities in Christian and it's nice to get feedback from several different points of view. I think Christian thrives more in his own environment.

More on progress - I'm not sure if this is progress, but I guess it is. Christian's become more sensitive with his hearing. For example, when our dog started barking, Christian cried. This is what he used to do before the accident, too. Not sure if it correlates to the same feelings, but something scared him and he showed emotion about it. He did the same thing when I sneezed behind him and he didn't know I was there. I'm calling it progress.

Christian has also been extremely receptive to tasting. He's now "tasted" mashed potatoes, yogurt, smoothie, orange, apple, and today he sucked on a pear. I'm not pushing this issue at all because, honestly, it's not on the top of my priority list for things I want him to do. But his OT was excited and we're going to do some more tasting next week. I'm just letting Christian lead the way. When he's ready, he's ready. This doesn't surprise me, though. Christian has been a good eater since birth. The OT also said we would see physical signs of him aspirating if it was happening. There's been nothing in his trach (but he hardly has any secretions anyway), he doesn't choke, and he hasn't been sick. So I'll update as we go!

And...I don't want to speak to soon, but...Christian has dramatically reduced his vomiting! SHHHHH! Don't say it out loud! But he's actually holding a majority of his food in! This is so huge! I'm so afraid that he'll go back to throwing up again but if he does, we're professionals at vomit clean up so we'll handle it. Anyhow, I'm really enjoying this new eating milestone and hopefully it will last.

So what do I chalk this sudden change up to? VITAMINS! Seriously, it's the only thing that correlates exactly with when Christian started holding food better and his attentiveness and vision changes occurred. Specifically the fish oil and magnesium. You can never pin point this stuff because we're always trying new things all at once, but I distinctly remember a change after we started the vitamins.

So that's where we're at folks. Christian is about to become a big brother soon and I can't wait to have them both to hold. I can't wait to be able to move around more, to actually get up and down and give Christian stretching and therapy without breaking a sweat.

I've got some things brewing for the spring that I'm going to keep under wraps for now, but stay tuned!

Happy Friday!
Monday, November 30, 2009

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.

Thursday, November 26, 2009

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

Tuesday, November 24, 2009

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.
Friday, November 20, 2009

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.
Wednesday, November 18, 2009

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.
Monday, November 16, 2009

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.
Friday, November 13, 2009

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.

Wednesday, November 11, 2009

The Left Side

I guess you don't know how well something works until you take it away and bring it back again.

I'm talking about HBOT. We were on our oxygen break last week. Christian seemed to check out for the week. He wasn't as alert and he has these episodes (that may or may not be seizure activity) that make him want to turn to the right. He would not turn his head from the right side all last week. He had more of these episodes and all I kept thinking was - I can't wait to start HBOT again.

When you're watching the treatment and progress it's hard to determine what exactly is working. Is it the brain recovering on it's own? Oxygen treatments? Both? But then you take it away, and it's evident. The oxygen treatments are helping the brain in it's recovery. And as soon as we had our HBOT session on Monday, he was alert, his head finally started coming out of the right position, and he seemed all together better.

This week we're working on holding our head up. Christian can now hold his head up on his own while laying flat on the floor and propped on his elbows. And he can do it for about 20 seconds at a time. And get this...with his head turned to the left! The left - the side he will sometimes not venture over to. It is so hard to get him over there and while he's holding his head up on his own, he looks to the left! Crazy kid.

Christian has been holding his head up for short stints for three days now, every day of therapy this week. And he's actually had four therapy sessions in three days so he's consistently holding his head up. Did Mom get a picture or video this time? Nope. But I'm determined to get it on camera by the end of this week. And if the past few days are any indication of the next few days, it should be easily caught on camera. Mom just needs to get on the ball with the camera.

We also met our new in home OT. She's very nice and has been recommended by the outpatient therapists Christian already visits. She also has a lot of experience with feeding, which is super helpful. Perhaps the best thing I heard today was that she's worked with a lot of different children with a lot of different issues. She said something to the effect that for a near drown child, Christian looks really good. He looks alert and tolerates therapy really well. I guess he has to because I've shoved it down his throat since we left the hospital. So therapy is something he's used to. I don't know how I managed it, but he's getting a type of therapy every day of the week, on Wednesdays now it will be twice a day. Many people don't know how I've managed it either. I guess it's just that I won't take no for an answer, severe determination, and the mentality of ask and you shall receive.

His tone (tightening) is continuing to decrease and he's becoming more and more flexible. Which means it was time to reduce meds again. Not by a drastic amount, but enough to see a difference. So we'll see how this goes.

So all in all it's been a more positive week with some positive change. However, I am concerned about possible seizure activity. It's always this looming subject that could pop up at any moment. Could be benign, could be harmless with the right medication, and could erase months and even years of progress. I see things in him that look seizure-ish. The neuro doesn't seem too concerned because she says that children like Christian will have a lot of movement that looks like a seizure but isn't. And then if there are seizures we have to determine which heavy medication will work best for him. Ugh, medication. I'm really not a fan of seizure medication so far from what I've seen, read, and heard. This ain't your drugstore's Tylenol. It's strong stuff with other side effects that cause more serious side effects. I'm really hoping this all can be avoided.

Moving along. I'm really proud of my boy. He's becoming stronger, yet more limber and I think about where he was in the hospital...then in Phoenix...and now and I get excited about what's to come. I'm hoping he'll venture over to the left a little more because I don't want him to miss anything over there. Whether he chooses to position his head to the right or to the left, I'll be right in his face and ride by either side.
Sunday, November 8, 2009

Itsy Bitsy Spider

Nursery rhymes. Why can't I remember any of them? The thing is that I do remember some but none of them seem right to sing or tell to Christian. I'll start singing Tinkle Twinkle Little Star and then I'm like, "That's boring. Not good enough. Next!" And so it goes with most every nursery rhyme I know. "That's too short." "That's not a good one." You get the picture.

So my two faves are You Are My Sunshine, which really isn't a nursery rhyme but it's pretty popular in the mommy world to sing to your baby. And the other one I started to sing to him the other day was this old classic...

The itsy bitsy spider crawled up the water spout.
Down came the rain and washed the spider out.
Out came the sun and dried up all the rain.
And then the itsy bitsy spider crawled up the spout again.

First of all, I've never realized how depressing and sad some nursery rhymes are when you really pay attention. Especially when I'm sitting there actually paying attention to what I'm saying, the room is silent, my baby is in my arms...all of the sudden Itsy Bitsy Spider has taken on a whole new meaning.

Then it hit me...Christian is the Itsy Bitsy Spider. Stay with me folks. Christian was on his way up the spout when down came the rain. And now he has to start all over again. But the best part is when the sun comes out and dries up all the rain. And now Christian has to start crawling (or moving, or looking, or talking, or grabbing) back up the water spout again.

Just an observation.

Christian will be going back to HBOT this week, which I'm really looking forward to. We also finally got his Mic-Key button! Yay!!!! This is so needed. He's had a feeding tube catheter attached to his stomach since he had the g-tube surgery in July. I don't know why they chose to do it this way but they had us wait 8 weeks then order the button (which will now literally be just a button in his abdomen that lays semi-flush against the skin) then wait for the button to get in because it was on back order and now set an appointment to get it "installed." Why is this process so hard? I'll tell you what's hard...having to try and do therapy involving tummy time, seat belt in a car seat, bathe, dress, and carry a child who has a tube hanging from his stomach that sticks out, gets stuck, and is all too easily pulled on. I am so happy to see this tube go!

Anyway, Mama Spider has to get back to Baby Spider and put him to bed. That way tomorrow he'll be well rested to continue his journey up that spout.
Thursday, November 5, 2009

Fat Thursday?

Why does such an easy week have to fly by so quickly?

We are in the middle of our oxygen break this week meaning no HBOT treatments for a week and then we start up again on Monday. With one less appointment, the week feels open!

As far as therapy goes, it's been great this week. With Christian's new vigor last Friday, I showed the video to his OT and she tried some new things with him. He does the best in a seated position. He's able to try and lift his head, he has better focus and attention, and his arms and legs are super bendy. Overall, he's been a lot looser and he's been swinging his arms so much that when he really gets going he knocks his toys out of reach.

I also put a silver pom pom over his feet while he was sitting so he could grab at it and all of the sudden I heard the pom pom rustle and realized his feet were moving underneath. This is a big thing because he doesn't really do anything purposeful with his legs yet. He can tighten them and move them and he can point and flex his feet but nothing much else. The OT today said he's a bit different than what they normally see which is movement in the lower extremities returning first and then the upper later. But his fine motor skills (grabbing, moving fingers, holding things, moving thumb out instead of keeping it in) and small muscle groups in his arms and hands are actually returning before anything in his legs or the larger muscle groups. Because he has full range of motion and is able to move his legs, once he's ready the OT said it should be easy for him.

Our early intervention coordinator came over. She's different then the original lady I was working with. She comes to Christian's therapy appointments in home. She came just to visit Christian today and brought him beaded necklaces to play with. She also brought oil and gave him a little massage, which he enjoyed. She also brought us a tumble form chair which will be great for his posture, alignment, and seating! I decided we love her.

So I guess it's Fat Thursday? These are the beads the EI lady brought for Christian. I layed them next to him in a pile and he just kept feeling and feeling for them. He finally fell asleep all wrapped up in his new toys. I swear this is NOT staged. Mardi gras here we come! Keep your shirts on, ladies.

He totally did this by himself.

Sunday, November 1, 2009

This is Halloween...

Halloween
Halloween
This is Halloween!
My Superman!




It was a Happy Halloween! But I have to say that I was slacking this year. I felt really disorganized and last minute. We didn't even carve pumpkins until Halloween afternoon and then we didn't put them outside or light them. We have like four more pumpkin just hanging out now, lonely and uncarved.


I had mixed feeling about Halloween, even though I know at this age he wouldn't have been doing much trick or treating anyway. We didn't take him door to door because we were worried it might be too cold. But I did see a few little ones about Christian's age toddling around with their pumpkin buckets. At those moments I wished Christian could be there with his little costume on trying to make sense out of how exactly this whole knocking on doors and getting candy business works. I know there will be a time when he can participate, it just wasn't this time.


We did make the best of it, though. He still got a costume and took a few naps in it just to break it in. It was size 2T-4T and I think it was barely long enough for him!


Superman and Superman's Dad




Superman trying to fly!


(I tried and tried to get a picture of him because he kept waving his arms around. I finally got him in action, unfortunately that means not that great of a picture.)




"Gosh! All that flying Superman has to do really tires a kid out! Good thing I have my trusty dog to pet and help me fall asleep."


I'm still on a high from Christian's therapy on Friday and I've actually been pushing him a little harder during our Mommy-Christian therapy and stretching. His weak side is his left. Not weak in the way of strength, quite the opposite. He always favors the right and resists the left so his muscles on his left side are actually stronger due to resistance. Anyway, I've been laying him on his left side to try to get him out of that habit.

I put him on his left side, went to another room, and upon return found him on his back. I put him on his left side again, left, came back, and there he was...on his back. This is different than just twisting to the right again because he followed with his legs and hips signifying a "roll" from side to back instead of just a twist. Small potatoes? Who cares. It's more progress which has made it a happy start to November. His face even looked...ponderous. Like he knew he had accomplished something, not sure what, but he looked interested in how exactly he kept changing positions on his own.

I hope everyone had a Happy Halloween and the count down to Thanksgiving begins. I won't even get started on how much this Thanksgiving will mean to me. That will be saved for another post.

Praying for more miracles - small potatoes and big potatoes welcome!

Friday, October 30, 2009

Week Made.

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

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

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

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

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

Cold-ish

Christian doesn't like the cold.

Good thing we live in Arizona.

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

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

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

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

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

Unafraid.

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

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

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

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

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

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

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

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

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

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

Mamas' Boys

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

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

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

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

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

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

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

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

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

I love my Mamas' Boys.

Popular Posts