Orthopedics today.

Today is our recheck with the new ortho. doc. Hoping I will have little to say tonight because the x-rays come back with no change from the last appointment. That is what I am expecting. He has had little change over time in the overall curve, but has been growing like crazy. Please pray that his left side has kept up with the right and that everything looks excellent. Thanks.

Chloe is walking.

For those of you concerned that she might never get the hang of it! :) She took off today across the living room. No more than probably 10 steps at any one time, but she is thrilled to be doing it. And, rather than us having to stand her up each time and coax her into doing it, she actually was pulling up on the furniture and turning herself around and walking to us. So cute. I teared up. These moments are so amazing. I mean, inevitably, I knew she was going to walk at some point. She's healthy, active, and was getting closer to doing it everyday, and yet, it still brought me to tears.

Colin enjoyed a super long weekend, thanks in part to in-service days and to the weather today for dipping below 0. He was thrilled. We took my mom to the docs for a check up. She is doing well. She had a much needed breast reduction 6 weeks ago. She is so going to kill me for making this public, but I figure, she finally told my grandmother, who by the way "didn't know such a thing was possible!" So, I figure, if Grandma knows, we might as well spread the word. She has really terrible arthritis in her back and was very, very large chested (sorry mom! the truth hurts!) Her doctors had been encouraging her for years to have this done, and she finally did. But, a procedure that was supposed to allow her to return to work in less than 2 weeks, has turned into a 6 week recovery. She is doing much better, and her doc is pleased. Apparently, she is just a slow healer.

Jeremy hasn't been feeling well for quite some time now. I guess about 3 weeks. They have checked everything...his heart, blood work, etc. And it has all checked out fine. They started him on medication today. Praying it helps. I want my husband back to normal. I am really worried about him, which doesn't ever happen. He's the one who takes care of all of us. So, hopefully this works, and things clear up for him.

Back, Ears, and Teeth...Oh, my!

Next Thursday's appointment has set my mind a rolling. I've been trying to educate myself as much as possible on congenital scoliosis and the use of braces. Thought I'd share some of the information I've found so far:

>>The general rule is that bracing is ineffective for congenital bone malformations of the spine. An external brace can not correct or even support a spine that wasn't formed correctly in the first place. A brace does offer some support to the muscles and soft tissue for those extreme cases of kids who have neuromuscular disease or are unable to support themselves in a sitting position. A brace tends to be more work and frustration for parents and patients than its worth. Another thing rare situation is that long term bracing in very young kids can cause underdeveloped ribs. If the bones in the chest are not able to have free movement (in and out with breathing) they do not fully form. The in and out motion is what makes them mature and become solid bones.<< This information was received from a support group that I belong to, please keep in mind, that the information is not from a medical expert, but from a medical mom who has become quite an expert, her son, nearly 12, has undergone many surgeries for his CS, including VEPTR surgery, which is something we may consider further down the road with Colin.

>>Bracing is rarely used in congenital scoliosis as the primary treatment. Bracing has never been shown to profoundly change the pattern of abnormal growth that results from most vertebral malformations. It is sometimes useful to brace secondary curves that result from the congenital malformation.<< from iScoliosis.com. It also added that a brace may possibly prevent a curve from continuing to increase. May possibly.

So, I'm still not sold on rebracing. The rib issue is something I would really like to address if the topic represents itself, especially since Colin is primarily an abdominal breather...meaning that he tends to use his abdominal muscles to assist in breathing, especially when his breathing is labored.

I finally got all of Colin's CTs and MRIs, along with pictures of him and his most recent audiogram (hearing test) sent off to the perspective doctor in Virgina. I have been praying hard that as he examines all of Colin's information, he will see promise for opening his inner and outer canal on his affected side. This could provided him with complete or nearly complete or partial hearing on that side...any of which would be excellent. Our current doctor thought he was a candidate early on, thus the 4 outer ear reconstruction surgeries. Once the day came, he said that Colin's ear canals haven't grown at a significant rate and that he felt the canals were too close to the facial nerves on his left side to permit opening. But, this VA doctor is supposed to be one of the top two in the nation. He's done many, many of these repairs. I am praying he sees something different.

And, of a totally normal kid nature, we head to the dentist this month as well. Just for a cleaning, which I am sure our fruit-snack lover is much in need of.

Back on track.

This week ends our spell of appointment-free weeks. With all of the free time over the past few weeks, ha, I've been focusing on being more goal-oriented about finishing my coursework. For those of you unaware, I am once again in school! (surprise, surprise) This time, I am taking online courses to become a medical transcriptionist, something that, aside from Colin's issues, I know nothing about. But, it is a job that I can do at home to provide a little extra income. Thus, the lack of blogging! Something had to go! But, I'm back. I'll try to be more dedicated to updating. Honest. And, thanks to those diligent friends of ours who let us know you really are reading it...feel free to post here as well!

Colin received his second report card of the year and all is well, especially after realizing he missed 12 of the 55 days this quarter. I think he's trudging right along at a great pace. He had his first visit to the principal's office last week. He has been pushing the limits both at home and at school lately, which is fine. A phase, I'm sure. His crime: crawling under his desk after being repeatedly asked to stop. The funniest thing is, his teacher told him to take a walk to the principal's office and when he got there, to decide if he was ready to go back to class and follow her rules...if not, he need to talk to the "man." Colin chose to talk to the head honcho. (I personally think he was being nosey and wanted to see how the big man spent his day.)

He still will only wear the BAHA sporadically, which is fine. I still have my heart set on this super-dooper, one of a kind doc to open his canal soon anyway. :) If not, then we will push it a little harder. To that note...I am having all of his CTs and MRIs sent this week to said doc, along with profile pics of our boy and audiograms...time will tell. This amazing man has agreed to take a look at all of his information, FREE OF CHARGE, so that we don't have to make a special trip for a visit until we know if he truly is a candidate. Blessings, little blessings!

Next week we head back to orthopedics with the new ortho. doc to re-x-ray and see if his curvature has changed, thus determining if he'll return to wearing his brace 24-7. Please pray that things remain unchanged and that I find guidance to make a good decision about what to do next if they don't. I really don't think that the brace has made a difference for him in the past, and the research I have done tells me that this is typical, and I'm finding it hard to follow the advice of our ortho. docs...I honestly don't hold the most confidence in any of them. We lost our primary doc to retirement a year or so ago, and nothing has felt right since. His treatment has changed entirely, along with their speculations on where it will go over time.

Chloe took her first unaided steps yesterday! Colin was ecstatic! He wanted to "practice" again with her tonight. So funny and cute. She has also taken to sitting in his lap at any given opportunity. He loves it. She loves it. I love it. It usually ends with her applying a good smack to his head before toddling off to find something else to occupy her time, but it is so darn cute, if at least for the moment.

And, for those of you unable to view the video below: Chloe has said "Dad" forever. It is the only word she says consistently. But,now, when prompted to say "Mom," she replies with a determined "uh, uh!" She knows what I want to hear; she's just not ready to satisfy my Mommy craving in that way yet. Such a little diva!

Chloe's First Words: Dad and Mom?...Uh, uh.

Chloe has finally mastered another word in addition to "Dad," which she mastered well before her first year...thought I'd share this moment with you.


Oh, she is her Daddy's girl!

Quiet.

I haven't posted because, well, things here have been pretty quiet, minus the crazy screaming kids, the barking dog, etc...but, really, things are incredibly calm and normal. Colin won't wear his BAHA. He says it doesn't help, and we're not pushing it. He's just been working away at school, homework every night. He is reading so well now. It's pretty cool. Not just because he can do it, but because he is so proud of himself for doing it. Chloe is all but walking. She can get around really well with the walker and has stood by herself on more than one occassion, that is, until she becomes aware, and then she immediately hits her knees. She's just scared at this point I think. She is becoming increasingly independent. Such a little diva...not a princess, although she looks like one! Princesses like to be waited on...divas just want what they want when they want it. That's our Clo. She wants to feed herself, she wants to comb her own hair (with, by the way, the same fork she feeds herself with), she wants to climb the stairs herself (both up and down), and the list goes on. I forgot how quickly that transition from baby to independence is. But, it is so much fun, too. And, you can tell she's getting older, because she is no longer a baby and her older brother has become sharply aware of the fact that he has to share with her...and neither of them are kean on sharing right now. We've had to pull her off of him a few times...she's a little bit of a bull. Can't imagine who she got that from. :)

Happy Birthday, Alicia!

We celebrated Jeremy's sister, Alicia's, 24th birthday last night with a Western party. It was a blast! Jeremy even got in the spirit with a great shirt and killer belt buckle. I'd post a pic of him, but I'd like to rest peacefully tonight. :)

Happy Birthday, Alicia! We love you!

The Flu, Again

Colin this time. Ugh! He woke up with it yesterday. I predicted it Saturday night as we drove home from Chuck E. Cheese...100s of finger-lickin', game playin', runny-nosed kids. I'm pretty sure that he doesn't even have to come into direct contact with the germs, they seek him out. Anyway, he is feeling better today and I am in sanitation mode. If I wasn't a germaphob before (which I'm pretty sure I was), there is absolutely no doubt I am now. Please do not be offended if I ask you to scrub down next time you come to visit! :) I am not a big fan of cold weather, but mother nature...bring it on! I want snow and ice and cold temps to kill it all. Thanks in advance! And, I apologize to those who would prefer to skip winter altogether! I am tired of colds, and the flu, and tummy aches, and laundry...especially laundry.

BAHA at home.

So far, so good. He really took to the BAHA (Bone Anchored Hearing Aid) well. I think at this point it is actually called a BCHA (Bone Conduction Hearing Aid) because it isn't bone anchored yet. Anyway, he could tell a difference right away. Upon testing, they noted at least a 20 decibel increase in his ability to hear with it on. As we walked out into the parking garage, he was talking to me about the cars, etc. and turned around quickly because her heard his own echo. He said, "d'you hear that? That was an echo!" And he spent all of last night stomping everywhere he went because he could "really hear his feet now." The band is going to take some getting used to. After 4 hours on, he was complaining of it itching. But, all in all, he is excited about it. We are going to wait until next week to start having him wear it to school, so that he can get used to it first. Taking it step by step.

Adjusting to early starts.

Jeremy has been adjusting fine to getting up early and heading off to work. The early commotion in the house has created an early start for all of us every day this week, and it's taking it's toll. I don't think I am adjusting quite as well. This morning started with Colin waking at 5:50. ugh. I miss 7:30 mornings. We'll head to Children's today for the BAHA. I am so excited to see how he does with it. I am still planning to make appointments for second/third opinions regarding opening his inner and outer canals, but for now, he can at least get a feel for the BAHA to help aid his/our decision on having an abutement placed for long-term use. I am actually looking forward to the rest of January without ANY appointments...weeks without appointments! None, not one. Will be so nice...now if we could just keep these kids in bed a little bit longer in the morning. My world would be perfect. :)

Missing little ears and dimples and such.

This morning as I checked Colin's back after he woke (which by the way, still looks great), the realization hit that the little sacral dimple he had, which sat a few inches above his bum, is gone. It was removed during his spinal cord release surgery. It was actually caused by the dermal sinus tract they found after the went in to release his cord, so when the incision was made to remove the tract, it removed the dimple. Something, as strange as it sounds, I will miss. I had grown quite fond of it. Just one more part of my baby that has changed. I miss his little ear everytime we hug. I used to rub my lips on it when we cuddled and rocked at night and I have actually cried a time or two or three over the loss of that soft little ear. So, I cry for things I miss and am saddened by the scars my baby will always bare. My little soldier and his war wounds.

Colin's Back and Other Stuff.

Just a picture of Colin's back...healing really well. I was too lazy to download pics yesterday...so here it is. It healed so quickly! Crazy. If only our skin kept that elasticity, etc. as we aged. :)


We head to the Audiology clinic Thursday for his BAHA aid. Excited to get that underway. I think for now, we are just going to try it out at home, over the weekend, etc. and let him get used to it before heading back to school with it.

Jeremy started his new job yesterday and is really excited about the potential there. I'm excited for him. They actually gave him his schedule for the whole year yesterday. That was so neat. To know exactly what work will look like for an entire year. So predictable. I can't tell you the last time that things felt so stable for us.

I have a request for prayer for my mother. She had surgery last week and is not healing as well as expected and it is worrying me greatly right now. Please pray for quick and exact healing for her and for reduced pain. Her pain management hasn't gone well through this process either. So hard to see your parents in pain and discomfort and scary situations. Thanks.

Free!

To jump, run, and play! Colin's neuro doc cleared him today. 3 weeks early. She said he has healed excellently and can go back to normal activity as he feels fit. So, we brought out the moon shoes! Thanks, Aunt Sherri! They are a ton of fun.

We'll head back again for a recheck in 3 months and then a followup MRI and appointment at 6 months. So...yah!

Happy New Year!

Can't believe I haven't posted in a full two weeks!!! Crazy! and I thought I was addicted! We had an absolutely fabulous holiday! Got to visit with friends and family and more family and other family and then some more friends. Had so much fun, ate entirely too much, and the kids were spoiled as usual. Decided to just post some pictures from it all. Hope everyone we weren't able to see enjoyed it all as much as we did! We love you and miss you all!

The Carnahan Clan!


Our baby doll!


Colin with the "goods" from Santa...Chloe was still snoozing.


Colin giving baby sis a ride in his favorite gift! Thanks Grammy and Pap!


Chloe learned quickly that stockings held good stuff!


Chloe's favorite holiday activity: Sitting on the boxes holding her toys. Perfect little seats!


Chloe's favorite gift: Her own kitchen! Thanks, Aunt Robin!


The coolest big red box ever! Both of the kids took turns in it! Thanks, Aunt Sherri! (For the gift, too!)

A memory of shoes.

I finally sent out Christmas cards today! I still have a few addresses left to finalize, but the majority went out today. I think this is the first year in about 3 years that I actually got them out. One year I filled them all out and stuffed them, but never finished the addressing. Another I bought them, but never actually did anything with them...think that was last year (post-op and baby). One year I did everything...and found them in my car in January...I never bought stamps and mailed them. Ha! I always have to laugh...it drives Jeremy crazy. Oh, the amount of money wasted in beautiful unused Christmas cards. :) If I ever find the ones from last year, I'll use them.

Life does that to you I suppose...makes me think of the one day, when I was still working...I think Colin was just past one year old. At the time, I was working full time and going to school as well...and probably doing a million other things. I have a hard time saying no, although Jeremy is coaching me on this. It was a crazy morning, as usual...as I was walking across the parking lot to head to lunch, I realized my shoes were making different sounds...I looked down...2 totally different shoes. Both black, but totally different. It was like 1 in the afternoon and I never realized it. So funny. I had to head to the dentist that day and just laughed...there I was feet up in the air...2 totally different shoes. Life does that to you some days. I feel that way a lot lately. Thankfully, I don't leave the house that often, so I don't have to worry about shoes.

Taking it easy?

Yeah...probably not. He is all over the place. We managed to get him to lay in bed for a total of about 1 hour today. He is on the move and now...12 hours later. A little sore. But, he's doing really well. Took a shower. Played A LOT. His incision looks great and he's happy. So, I'd say we are, without a doubt, on the mend.

Home.

Colin was released today at 5. He was able to get up and around walking mid-afternoon, so we got the ok to come home. He's okay, but a little tired and cranky. As are we all. :)

Thanks to Gram and Pop C. for the Christmas book, to Crystal and Angel for the coloring books and card, to the Berzonsky's for the colorful card, and for everyone's thoughts and prayers. Happy to be home.

Working on Sitting.

That's our goal for today. They weaned him off the morphine over the weekend, but he is still on round-the-clock pain maintenance meds. He came off the IV completely yesterday and is eating and drinking well. We tried getting to a sitting position yesterday, but only made it up to about 20 degrees...so, that's the goal for today. To sit and maybe try walking. He can't come home until he is walking on his own. They were not optimistic that we will head home today, but they said there is always a chance. His incision is healing well and he has had no leaking, which was why he had to remain flat for 48 hours...so, it worked. That's good. He was happy yesterday. He's ready to go home. We both miss Chloe. This is the longest both of us have ever been away from her. Missing her badly. But, Daddy is taking good care of her and her cold seems like it is finally going away, so that makes me feel better.

Thanks to Mum-mum, Aunt Alicia, Nana and Papa, and Gram and Pop C. for taking care of Clo during the day so that Jerm could come visit everyday. Thanks also to Jen and Tom for the Monkey and balloons and for all of the get well e-cards from my girls! Thanks also to Mark for coming to visit and for the books and everything else.

No change.

Colin is resting. I suspect he'll be pretty groggy until after we're able to quit giving him the morphine. He is still having pain, so they have started giving tylenol every 2 hours between the doses of IV morphine. He did eat 2 popsicles and had a little juice to drink, so that's a step in the right direction. I'll update in the morning. Thanks to Mum-Mum, Alicia, and Nana for taking care of our girl today. I miss her much, but am glad to know she's in good hands.

Room 28A, 10 North

Colin is out of surgery and resting in his room. All went relatively well. Once the doc got into to remove the fatty fillum, which was causing his cord to tether, they also discovered a dermal sinus tract, which had to be removed as well. So, his 3 inch incision tripled, at least. It runs from his lower back to just above his bum. She doesn't believe that this will cause any increased pain (they didn't have to move any muscle in the lower part to remove the tract), it shouldn't cause any problems, now that it has been removed, it does increase his risk for spinal fluid leakage. Time will tell. He is in pain, and they are providing him with morphine every 2 hours...for at least the next 24 hours. All in all, the doc thinks things went really well, depsite finding the tract, which was undetectable on his MRI. Please pray that he continues to rest and that the pain subsides quickly. Please pray for quick and easy healing and no leaking of spinal fluid. Please pray for a private room soon...we will get one as soon as one opens because we will be here for a while, but the hospital is overloaded...252 patients 237 beds...so we have to wait. Privacy always helps for sleep at night for both of us. I'll try to update again later if possible.