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!

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."

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.

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!

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!

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.

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!

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!