I'm a liar...7-year check-up.

Just to clear the air...I'm a liar. Colin only gained 7 pounds this year. Not 10. :) and he grew 2 inches. So he's in the 50% for his weight!! and 75% for his height!!! I can't believe that! They started him on Singulair for a weird daytime/playtime cough that they're presuming to be his asthma, and we have to head to get an x-ray of his abdomen early next week because his belly is hard, presumably constipation, although he is showing absolutely no signs of being constipated. But with history and such, they want to be sure. Especially with the continued bedwetting and increase in peeing. Which leads us to calling neurosurgery, which our pediatrician is going to do for me on Monday to see what the next step is...do we wait it out to see if it gets any more frequent...perhaps it's a typical 7-year-old thing (waiting too long to go, too many drinks too late), which of course is possible. Nothing too weird about a kid peeing a lot other than where we were 8 months ago. So...75% CRAZY!!

In 6 months...

We will have another MRI of the total spine conducted. That was the conclusion of today's call from neurosurgery. Nothing has changed drastically, which is great. The syrinx (fluid-filled cavity in the spinal cord) has not increased in diameter, which is great. But, it is still rather long, which is concerning for a possibility to retether. So, we will continue to watch for signs of retether and monitor it again by MRI in another 6 months. Not bad, not great...but not bad.

My boy is a rock star!

Arrived at the hospital at 6:45 this morning to prepare for sedation for the MRI. The full spinal MRI can take hours and, obviously, a 6-year-old isn't normally expected to be able to lie completely still for the amount of time needed to retrieve the pictures.

Colin's tears over the last few days haven't been over the MRI itself, but the sedation. The sedation used is slightly different that that of surgery and for whatever reason usually nausiates him, which is odd because the surgery sedation usually doesn't (usually).

He asked me, in front of our nurse, why he had to be "put to sleep." The nurse explained the need to lie still and Colin responded that he could do that. So, they let him give it a try. If you've never had an MRI, here's a quick explanation: You lie on a bed that slides into a really tight tube. The entire time they take pictures the equipment makes sounds that reminded me of mack truck jake breaks and honking mack truck horns times 50. The sounds continue the entire time...you have to remain completely still or they have to repeat the process for adequate pictures.

Colin did it!!! They plugged his ear, prepped him. Told him to relax and rest if he could. I am so proud and was so relieved! They didn't have to repeat a single image. I watched him the entire time...he flinched at the first sound and after that stayed completely still. Although, he admitted after the fact that he wiggled his toes once and opened his eyes twice. :) What a relief. Even the technicians were amazed. What a big boy. I sat there watching the entire time contemplating if I thought that I could have laid there that still. My conclusion: Probably not. He never ceases to amaze me.

Praying hard for the results to come quickly and to show, well...nothing.

Bye go the carefree days of summer...

Thursday will end our "carefree" summer months. I work hard to avoid scheduling appointments/procedures/surgeries in June and July. It's important to me to give Colin a break from it all...shoot...to give all of us a break from it all. So after over a month with nothing more than dentist and regular pediatric checkups, we head to Children's Thursday for a full spinal MRI. They will be looking to see if his cord has re-tethered and how it has healed internally. They'll also recheck the neck bones to look for increased fusion and to make sure that the bones are not compromising his spinal cord. Please pray hard for Colin that all is well.

Up until a week ago I was confident that it everything was well. From the date of surgery until last week -- over 6 months -- we were completely bed wetting and urgency free. Last week, we had two major bed wetting episodes and he has been "running" to the bathroom more. Amazing how a little pee can make a mom's mind turn. I have been working hard at trying not to think about the negative possibilities of anything to do with GoldenHar syndrome...to be honest...I have been failing.

The break from appointments in nice but returning is always hard...and returning with the first one an appointment with anesthesia makes it even more rough. He is dreading it and it brought him to tears yesterday. I hate this for him...I wish I could endure it all in his place.

Last fall rocked our world. After YEARS of running through lists of could happens, we were slapped with many that did happen in a matter of months...

I used to look forward to appointments. One more thing I could check off the list...one more appointment we'd made it through without any of the things that "could" happen. Now, I seem to be anticipating "routine" checkups months in advance. My mind has been filled with worry about the future and I can't seem to get my thoughts to avoid the negatives. It makes for long nights.

Neuros and IEP

Colin's neurosurgery appointment was uneventful just as promised, and I am not complaining. He is healing fine and showing no signs of a redeveloping syrinx or tether. They will schedule him for the followup MRI sometime in June/July.

The IEP meeting went fine. Colin is doing really well. They have been working with him on lipreading this school year and he has made a lot of progress. They will begin working more aggressively, both in private sessions and the classroom on self advocacy. Colin has a lot of difficulty speaking up when he is having issues such as being able to hear, etc. Mostly because asking someone to repeat or letting them know that he has difficulty means he has to call attention to himself, which he does not like at all. So, they will be working to make him interact more one-on-one in situations with adults he is not as comfortable with around the school so that he can become more comfortable engaging in conversation with them going forward. I know this might seem silly to some of you, but it really is a big deal. It is extremely important for him to overcome his shyness to some extent so that he is able to convey to the adults around him when there are inadequacies in his learning environment so that he doesn't fall behind simply because he is missing information and the instructor is unaware.

But, all-in-all, he is doing really well. He is reading on grade level and his teacher bragged about his outstanding problem solving strategies. She said he looks at problems in a way that none of the other students do. Extraordinary...no doubt!

Annual Spring Colds...sniff.

We all have colds. Jeremy and I for some reason seemed to have gotten the worst of it. Lucky us. Jeremy has been fighting it all week, and yet, has continued to go to work. He even worked double shifts the last 2 days. Love you! Thank you , thank you, thank you for always working so hard for us. The transition to this new job has been difficult financially, to say the least, and Jeremy has worked as much as possible, even 80 weeks at times...without so much as a single grumble.

My first full week of work went well. A little busy and a lot of hectic with the sickness and all, but I'm happy I chose to do this. I think it's going to be a great thing once I really get the hang of it.

Colin has a checkup with the neurosurgeon on Monday, which will be uneventful. They can't really tell us to much about his spinal cord from and external review, so the doctor will pretty much run down a list of questions, which we'll answer and she'll check how he's healing post-op...which is just fine. Most likely, we'll also discuss and start the scheduling process for his June MRI.

Next Wednesday is his IEP meeting...no idea what that stands for, honestly, at the school. To review the work his IEP teacher (not her title by the way) is doing as well as what the school can/is/isn't doing in regard to his unilateral hearing loss. This will be routine as well. Just a yearly, have to, kind of thing. My main topic of discussion: The routine letter generated by the school requesting my assistance in making sure Colin is missing as little school as possible. You know, it is difficult for them to teach the required curriculum if regular attendance is not encouraged on the homefront. If his absences are medical in nature, please provide the necessary document to prove so I know it was a mass generated letter, but it steams me nonetheless. The school is well aware that his absences are medical in nature. We do our best to make sure he misses as little school as possible. And, I still don't understand why, being that his counseler, nurse, his teacher, and the principal all received copies of the letter...I don't understand why one of them wouldn't have pulled it, noting that he does have a medical condition requiring obvious routine care. I know it's stupid, but when you are working so hard to be the best parents you can and juggle it all...it really sucks when someone questions your ability to do just that. Even if it was unintentional. I'm done ranting. It's been bothering me for weeks.

This week has been long and exhausting to say the least and ending it sick stinks.

Colin's TCR Anniversary

Yesterday marked the 3-month anniversary of Colin's tethered cord release. It actually seems like eons ago. That always happens...takes forever for the surgery dates to arrive, but then after they pass, the time flies by. Anyway, he'll be thrilled with this post when he's older, but we are thrilled with the outcome of the surgery.

Colin, even after potty-training, never really moved past nighttime bedwetting. We had no idea for sure if this typical kid bedwetting or if it was actually caused by the tethered cord itself, a sign of bladder failure. After his bout with Rotavirus in the fall, we felt that it might be the tethered cord, but there was no way to be sure until after the surgery. He lost all control of his bowel and bladder when he was sick and dehydrated in a matter of hours. It was really shocking.

Colin is doing great. In the past three months, he has only had 2 accidents! Only 2, both of which, by the way, I'm pretty sure were the result of forgeting to potty before bed. So, no doubt, he really was already showing signs of bladder failure. I am so thankfulf for that routine MRI, who knows where we would stand today had we not caught this so soon.

We'll have an MRI recheck in June to be sure that the cord is not retethering, and a checkup next month, which I am sure will be uneventful. He is healing really well and has had no issues since surgery. Happy Anniversary and good ridence tethered cord!

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!

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.

An Early Start.

We will be heading out in the wee hours of the morning tomorrow. Colin is scheduled for a 6 a.m. arrival. His surgery is scheduled for a 7:30 a.m. start. They have the OR scheduled for 3 1/2 hours, but the doctor said the surgery itself will only take about an hour and a half or so. This'll be by far the quickest surgery he's ever had yet. That means, we could be out of recovery and settled in our room before lunch. That would be great.

And even greater...as of mid-January, Jeremy will be an employee of the Homer City Generating Station. Yah! A full-time, year-round, great benefits job. We are so excited!!! To say the least!

I will try to update daily over this weekend to keep everyone up to date on Colin's recovery. Please keep him in your prayers. Pray for no complications, quick and simple healing, and especially minimal pain. Thanks.

Thanks also to the Townsend's for dinner tonight. We appreciate it greatly!!

Preparing.

It seems like forever since I posted. Chloe hasn't been feeling well at all. Really bad cold, which has turned into a cough, and now tummy troubles. She isn't napping well and just wants to be held. Me too. :) Jeremy is working for a local contractor, and since Daddy's really the only one she wants right now...the days are long. Have I mentioned how tired I am of colds and flu-like sickness? Sigh.

This past weekend was nice. Birthday party on Friday for Pap Carnahan, night out for Jeremy and I on Saturday (thanks mum-mum), and a Christmas party with Mark on Sunday for Colin. He had so much fun! Thanks! I have pictures and will try to post when I have a little more time.

Otherwise, I am attempting to prepare for Friday. Can't believe it's here already. Part of me wishes it was months away still and part of me just wants it to be over. I'm so worried and Jeremy and I are both so tense. I think it's on Colin's mind too. He hasn't said anything, but he's really acting out this week, which is not like him at all.

Well...off to try to get something done before Miss Clo decides naptime is over.

Another winter cold.

Chloe had the sniffles yesterday, and I was hopeful that it was just teeth...she is getting a total of four right now...the middle top and bottom. But, it appears that she indeed has another cold. Nothing bad. Just a cold. No worries for Mom and Dad on this one, she's actually just been really sleepy. I got a lot done today in fact, but, I feel really bad for her. Hoping Colin doesn't get this one. He got over the last round of sniffles fairly quickly, but we are only 7 days away from surgery...although I wouldn't mind postponing. :) Just kidding...not really. :) Really.

Colin had his Santa workshop today at school and got to pick out gifts for Christmas. He was so excited. So much so, that he wanted to give them to us as soon as he got off the bus. He does not want to wait, but we have convinced him that it would be better to wait until Christmas Eve. :) Although, Philbert got his gift today. Lucky guy! Oh, the life of a turtle!

Let the Countdown Begin.

Today we'll start counting down with Colin's advent calendar to Christmas...24 to go, and marking the days on the calendar until surgery...14 to go. I absolutely love Christmas...for all of the obvious reasoning of what it represents...and because I love, love, love giving gifts. I also love the whole idea of Santa and the magic that makes my boy's eyes light up. I can't wait to get our tree up to see the joy in Chloe's eyes as well. So much fun. I hate that this will be the second year in a row that my baby will spend recovering from surgery over the holiday. I was hoping that this would be Colin's first year for midnight service. I used to love it as a kid. Next year maybe. We'll finally celebrate Clo's first birthday on Sunday with family and friends. Can't wait...mmm...messy cake.

Neurosurgery Appointment

Went well. Thanks first and foremost to Evie for traveling along. So nice to have you there...thanks for all of the help with both of the kids. The doc basically explained the surgery to us in more detail...they'll go in remove a little bone from two of the vertebrae to allow room to get to the pocket of fat...they'll open up the fluid sack and remove the fat to release his spinal cord. The incision will only be about 3 inches. The surgery is on Friday and then he'll have to stay flat Saturday and Sunday. Late Sunday they'll start to raise his bed and see how it goes and let him take it from there. If all goes well, we'll get to come home on Monday. The doc made us feel more at ease with everything, mostly because she was so at ease with the whole process. They do this often and she said she explained the complications, but said she has never had anyone experience those complications...she's only read about them. So that made us feel better about it all, too. She said that actually as soon as he is feeling like it, he can go back to school...even that next week before Christmas. So...that made us feel better, too. So all in all, a good visit.