Happy Birthday Party.

Daddy's girl celebrated her first birthday Sunday!



Waiting patiently for cake.




Chloe was such the perfect party girl. She had such a blast and played along through all of our silly traditions. She was so cute and so much fun! It's official, she's one. As we were preparing on Sunday, Colin asked how old she'd be today, since she was one last time we celebrated. (which was on her actual birthday, just the four of us.) :) Cute as always, funny boy!

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.

Appointment/Interview Update

Colin's appointment was unremarkable...only slight changes in his vision (astigmatism), but not enough to justify glasses yet. And his orbital socket on the left has increased slightly in size, most likely due to the shifting of his facial bones. The Craniofacial team will also be watching for this...a continued increase could put more pressure on his eye socket and cause damage. But, today, everything looked good. No dermoids, no damage, nothing. Good visit.

Jeremy had his interview this morning and really feels things went well. All in all they are interviewing 30 people for 5 positions and we should know something by the 15th of December. Praying for this. If it's meant to be, it will be.

Opthamalogist Tomorrow.

For a routine checkup. Please pray it is routine and that nothing has changed since previous...thanks and goodnight.

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.

Back to Life, Back to Reality

This week has been so nice. So normal. So great. We celebrated Thanksgiving with all of Jeremy's grandparents...first the Ferra's for lunch and the Carnahan's for supper. So nice to see everyone and to relax! Friday was our 10 year class reunion. So much fun. So many people actually made it and it was great to see them all again. I forgot how much fun high school was. So few have changed. It was a great night. We had breakfast with the Blystone boys Saturday morning, which was about as much fun as Friday night! Thanks to every single person that made me smile and especially to those who made me laugh! Haven't laughed that much in a really, really long time!

Thanks to Gram and Pap Carnahan for keeping Colin and to Nana and Papa for watching Clo. Saturday was an amazing lazy day. We watched movies, took naps, and just relaxed! Same goes for today...not quite as relaxing though...Chloe is finally getting her FIRST tooth! So she's a bit cranky to say the least. And, she wants nothing to do with me...at all. Poor Jerm was a little cranky, too! And, Colin woke up with another cold. Hasn't hit the chest yet, so I'm praying hard it stays in his sinuses. If it goes to the chest, surgery will have to be postponed, and that scares me.

Tomorrow...back to reality. We meet with the neurosurgeon. I think I'll feel more at ease after the appointment...I hope. I'm the type of person that thinks of all of the what-if's, so the more information I have, the more I understand, the more at ease I usually am. The past few weeks have made me more at ease with everything anyway...I think I've sort of gone through a weird sort of mourning process. Not sure if this will make sense, but figured I'd try to explain it for those of you who have dealt with psycho me recently. :)

See...in the past 6 years, we always felt like we knew what we were dealing with. We have been told time and time again about the many things that could happen, but of course, nothing major ever has...we dealt with ear issues, and basically ran under the "it will never happen to us" theory. Then in August, we went for a routine dentist appointment and discovered Colin's facial bones were shifting pretty dramitically (just over the last 6 months.) But, that was the first time one of the possibles became a definite. Then, the spinal cord, which actually, we didn't even see coming. Now the neck bones. Every check-up has brought something else with it. So, I've been mourning. Mourning the fact that I can't still pretend that those possibles will never happen to my boy. Now, all I seem to be thinking about are the possibles and there are so many, and so many of them are so very scary. So, I'm scared. For the first time...I'm scared. Because there will never be anyway to predict it all...to ever know what tomorrow holds. But, I'm getting a little closer to excepting that. Not there, but closer.

What else can I do? I am Mommy first, everything else after. And, I am no help to anyone when I am swimming in a pool of self pity. Yep, it's true I feel bad for myself. As hard as I try not to, I do it. I hate that I do, but sometimes when I'm really tired, I hate it all for me and especially for him. And then I feel bad for him...this Mom that wants NOONE to feel bad for him, does it herself. Ughhh! I hate that, too. But, life goes on, and everyday is new. So, I'm working under the "try not to make others around me miserable" philosophy these days. That's hard too.

Happy Birthday, Chloe!

Our baby girl is 1! I can't believe how quickly her first year went!! We didn't have the big party I planned on this weekend, but it was fun watching Colin trying to convince her to open her presents faster! He was so anxious for her to play with her toys (so he could play with her toys)! So cute. We'll still have the party, just at a later date...once we're sure she can eat cake. :) But, happy birthday, Chloe! We love you, much! She had her one year checkup today and at 29 and 1/2 inches and 21 lbs. 3 oz. we are proud to say she is average...she ranked almost exactly 50th percentile for weight, height, and head. Some pictures from Saturday...check out the shirt, it's pretty much been the theme of the last 5 days. Oh, the father-daughter bond. This child can do no wrong. :)

The Great, Good, and Bad

The Great: Jeremy is home...for good. No going back to this job! Yah! And on top of that, he has an interview November 29 for a job that would be steady and closer to home! We've been waiting forever to hear something! So excited. This would be such a blessing for us right now...financially, mentally, physically.

The Good: No more back brace, at least until the next visit to the ortho. doc in February. Love the new doctor. So friendly. Very professional and thorough. He really listened to what I had to say and my thoughts on congenital scoliosis (which is what Colin has...basically just means he's had it since birth and that it is caused by spinal anomalies. The other type comes with growth and usually doesn't include anomalies). He too feels that the brace will not keep the curve from increasing...if it increases, it will most likely happen regardless of whether or not he is braced...which is a long in depth story for another day. And, no spinal fusion confirmed...he said he would wait until 1. the curve increases much more and 2. he is much older and closer to being done growing.

The Bad: Our last ortho. doc hadn't checked the vertebrae in Colin's neck for more than 2 years, basically the entire time we have seen him. I questioned the new doc. about this and he looked through the charts to verify...he requested we have it done right then because he noticed a decrease in Colin's neck movement from the last time it was noted. (2 years ago...rghhh) A few of his neck bones, which just like his back-not a single "normal" vertebrae, have fused...they have grown together and become one bone, thus limiting his movement. Some have shifted and basically his neck bones are all just a big jumble, jigsaw puzzle-like looking thing...no good way to describe it. What this means...nothing major regarding fixing, etc...unless it gets worse or interfers in breathing, apnea, etc...but, we have been told that we need to take extra precautions to avoid traumatic injury...thus, No Football, No Hockey, No Wrestling, No Karate, No Trampolines. Jeremy and I are kind of looking at this as a neutral, his health is not currently jeopardized by it...just something we need to be more aware of. I called it a bad because Colin would consider the No Trampoline a definite bad. Thankfully we won't have to cross that bridge until summer.

Crazy Baby!

I have no idea how we got to this point! Honestly! I turned around for one second and when I looked back...

A Year of Beautiful Memories

Slide your cursor over the pics for captions.

Almost time for cake!

Colin got his flu shot. All is intact, minus a few tears. :) He did good though. Chloe will not be getting her shot until next week. Decided to wait and do them all at once at her 1-year visit. Can't believe she'll be 1 in just days! So crazy! I think back to all of those tear filled, sleepless nights...that I wished would pass quicker! And now, it's been a year.

She has "skin breakdown" and "most likely a skin infection" so the doc gave us a new cream to try and suggested changing her diaper at least every 2 hours...which, by the way, I feel like I do already. So, we'll see. As far as the formula/milk thing goes...we are to wait until Sunday/Monday and try to reintroduce her regular formula to see what happens. If she reacts negatively again, we are to wait another week...you get the picture. So, doc says it's most likely temporary, nothing we can do right now but wait it out and keep trying...if between 13 and 14 months of age still no luck, we'll talk next steps. Let's hope this weekend it goes fine...this girl's got cake to eat!!!

Jeremy

Will be home THIS WEEK! Just in time for little miss's birthday! I couldn't be more impatient! Can't wait!!! Just wanted to share that news! I'm bursting! I've never been so excited about a layoff!

My Thoughts on Spinal Fusion

I researched more today...a spinal fusion is something we have discussed in the past with Colin's ortho docs, but I guess they never termed it that, just described it. Basically, it is where they go in and attach rods, screws, etc. to his spine at the top and bottom of the curvature(s) and then use those rods to help decrease the curvature. From what I remember, this is something that they don't usually do until the curve hits 40 degrees. Colin's at the most read 34 and I personally believe it had something to do with the way he was standing that day. The x-ray technique for measuring the curve is not very accurate...which is extremely frustrating. His degree of curvature has ranged anywhere from 26 to 34. (the most recent being 28 after 6 months unbraced) The day he read at 34 led to the need for him to wear his brace, which covers from his hip bones to under his armpits. You can imagine how uncomfortable it is, thus my desire for a second opinion...our current doc insists on continued use. If this doc confirms as well, then we will go back to wearing it. I discussed that possibility with Colin today and he understands the importance of listening to the doctor. :) He is such a little man.

btw, he asked me if he was still contagious today. HA! What six-year-old uses contagious as a part of his regular vocabulary!

Anyway...I'm nearly 100% positive that a spinal fusion, although mentioned by the neuro doc will not be in his near future. Friday's appointment should confirm.

Colin headed back to school today without problem. Yah! And, brought home his report card...he is a genius of course! Like you had to ask! So proud! Chloe is doing find, minus a lingering rash...doctor will check tomorrow afternoon. And if anyone cares about what I did today...I tackled the mile high pile of filing and bills that had taken over my dining room table. All is well and in it's place...minus the bills of course. They are waiting in a single file line until their name comes up or we get a call. :) And life goes on...

Colin's Book

I've started working on Colin's book. Thanks to everyone who already sent notes and photos! So cute! I love it! It's so nice to read about my boy through the eyes of others. Love it, love it, love it! So, please keep sending them. I am planning to give it to him preop or postop in December, so I want to get as much done now as possible. Thanks again to everyone!

Colin will head back to school tomorrow. He seemed great today. Even added a squirt of ketchup into the diet! So exciting! Chloe is doing good. Her sleep schedule is obviously off...little miss no-nap, but she ate a normal dinner. Jerm is tired and admittedly lonely. I am missing him desperately. Can't wait to have him home.

Flu shots Wednesday...have to have them well in advance of surgery. And orthopedics Friday...to meet new doc to discuss continued need for bracing his back and possible spine fusion?? I've done a little research, but not enough yet to share anything significant. Not to mention I've sort of been avoiding thoughts on surgery right now. I think I'll wait to deal when I have a strong shoulder to lean on, thus the need for my husband to return home. sigh... :)

Missing Daddy!

I was planning on posting this last Tuesday, but obviously some things came up! So, since we are missing him today and he can't come home, I thought I'd do it now...even though he won't see it for a while. We have the most wonderful Daddy because:

1. He stayed up with mommy into the wee hours of the morning to keep her company walking the floors with baby girl last Sunday.
2. He woke up hours later (5am to be exact) just to keep mommy company while she rocked baby girl.
3. He stayed up to get Colin off to school, while mommy went back to bed.
4. He took over mommy duties: packing lunches, getting homework ready, dressing Colin and getting him on the bus.
4. He changed sheets, very yucky sheets.
5. He did laundry, his and ours, also very yucky.
6. He played peek-a-boo over mommy's shoulder to keep baby girl from crying, even though he had to cover his nose with his shirt.
7. He went to the store for groceries and supplies.
8. He played patty cakes, even though exhausted, over and over and over again!

9. He cuddled for hours even though baby girl was germ infested.
And the top reason we missed Daddy this week:

10. In 36 hours, he made us all smile and laugh and feel protected and loved. He is a wonderful man and I am so happy he is mine.

So glad he is feeling better! He headed back to work last night and claimed to be feeling fine. Thankful for that. Colin is definitely feeling better. Not 100%, but I'd say pretty close. He's still tired, but we MIGHT head back to school Monday or Tuesday. We'll see how today goes. Chloe is better, much better, and took the soy formula fine. I think we'll stick with that for now.

Today feels normal. I love normal. Happy to have my simple life back for now.

Colin Was Up Through the Night.

But, just to pee!! So excited about that. His stomach has been calm...really, really calm all morning. So, so happy about that. I honestly think he is through this.

Chloe, on the other hand, is a different story. She has had terrible potty problems since I gave her formula again for supper last night, which also means she has back her terrible diaper rash. I just want this to end for her...today is day 8. Yuk! She was fine for days, but only without formula or any other dairy. So, we are going back that route for now. We may try some Soy formula tonight to see how she handles it. But, it is looking like she has developed an intolerance to lactose. Praying that it is only temporary. Read somewhere on the Internet last night that it could be. I'll make an appointment for her Monday to discuss next steps with her doc. Aghhh...could you imagine me with a lactose intolerant kid? Ha! I'm the dairy queen for goodness sake!

I have a special request this morning for a good friend. He's struggling right now through some really, really hard times and could use some guidance and peace of mind to think and find good rest. Please pray for him. Power in prayer people. Keep it up!

Will it ever stop?

Jeremy is in fact sick. There is a possibility that he may just have the actual flu. One of the guys he is living with right now for work had the flu last week, so that is possible. He's been sick since midday yesterday. Feeling so bad. I know he wishes he were home right now, but at this point the drive is pretty much not doable. So, two days of work down. Please pray that he starts feeling better quickly. If he misses too much work, they could lay him off.

Colin is still slightly dehydrated, so we will continue to push fluids and the doctor forewarned us that a night of vomitting may be a part of this weekend. I guess that's pretty typical to have a relapse a few days after returning home. Yuk! Chloe is fine, although he is concerned that she may have developed an intolerance to lactose. I am to try to give her a bottle today (full) and see how she does. I'm really nervous about that. I guess that's typical for younger kids to have that happen if they have it really bad. Which she did, I was just able to keep her hydrated through it.

Some interesting facts about rotavirus: there is now a vaccine (but you have to start getting it before 3 months), once you have it you're contagious for a full month or more, and it can make you lactose intolerant! YUK! to all!

Please pray that Colin drinks really well and doesn't go back to vomitting. Please pray that Chloe handles the formula well. Pray that Jeremy gets better quickly and that I don't get this. And, for my hands. They hurt really badly.

So many thanks.

Thanks most to Nana for completly putting off your own life to take care of our baby girl! and for doing all of my laundry and cleaning and sanitizing and for groceries and picking us up at the hospital and everything! I would be lost without you and I know you say it's no big deal, but it is huge...so thank you! And thanks Papa and Seth for helping and visiting her and for sacrificing normal life for us!

Thanks to Mark for visiting us at the hospital and the gifts for both of us! And, for making yourself constantly available to us! Thanks to Mark also and Alicia for getting our car home. Thanks Alicia for visiting and thanks to Natalie and Alicia for keeping everyone posted on this here blog! :) Thanks to Grammie and Pop Carnahan for staying with Chloe yesterday! And for helping get us settled back in last night, along with Mark and Nana! Thanks also to Mom Mom for supplies and food today! And for making my boy smile right now! So happy when he laughs.

Thank you, thank you to Sherri, Jeff, Tanner and baby McKenna for bringing us supplies at the hospital! And, thank you, thank you, thank you Jeff and Tanner!!! For cleaning the yuckies out of my car! You are forever my brother, Jeff! I can never thank you enough! Thanks to Sherri also for numerous visits to the store for Nana and me! And thank you for caring and hurting with me! You feel it too. I know that now. Thanks. Thanks for being there. Always. Call after call!

Thanks to Shannon for constantly checking in on me and being here even though you can't! I love that I can call you whenever! Thanks to Aunt Lisa and Uncle Greg for the kind words, beautiful card and book. I am looking forward to reading it. Thanks also to Karen, Tom, Matt, Will and Jon for the cards! What great writing Matt! Thanks to Mrs. Bailey's first grade class for the beautiful cards! Colin was so happy to have them and they really made him smile. He couldn't believe that everyone sent cards just for him! Thanks so much for thinking of us! Thanks also to Ella for bringing the cards and Colin's schoolwork home! You are so sweet!

And thanks to everyone for calls and e-mails and prayers! It all means so much. Little rays of sunshine in otherwise cloudy days! Thanks.

Sweet Sleep.

Colin slept for nearly 11 hours. Chloe for almost 10. And I got 9 hours. WOW! Feeling so much better right now. Colin is still having a great deal of trouble drinking. My sister brought over Pedilyte Popsicles, so we are going to start those as soon as they freeze. He was extremely tired this morning, so I've been pushing him to drink really hard. He's not very fond of me right now. I went ahead and made him an appointment for 2:45. They'll check his hydration. That'll hopefully ease my mind for the weekend.

Chloe had a normal diaper change (yah!) this morning. Who knew I'd get so excited about pooh! Sorry to be relaying all of this information. Maybe noone else cares as much as I do, but hey, this IS the story of MY life. HA! What an exciting one it is. Anyway, I started her on formula, just a few ounces this morning, so we'll see how she does.

We've been getting a lot of calls/e-mails, etc. asking if there is anything we need. Yes! We need antibacterial hand soap (I am going through a ton of it), grape and apple pedialyte, pedialyte popsicles, and lysol wipes (I have been cleaning everything, all toys, surfaces, etc. like crazy). I guess this virus can last for nearly a week on hard surfaces if not cleaned! So that means all of the toys the kids touch, their beds, our furniture needs to be sanitized often. Yuk! So, if you'd like to help, those are the things we need the most right now. It's obviously impossible for me to go to the store right now and we are running through these things like crazy.

WE ARE HOME.

I had to laugh as I looked over the titles of my posts...it's the flu, still the flu, flu, flu, flu...Guess what, not at all the flu! Ha! Silly doctors! Makes me feel better about all of those "unnecessary" ER visits. I was really starting to doubt my mommy instinct, which is usually right on. But, WE ARE HOME! So, so thankful for that. He is eating. Not a lot, but he isn't throwing up. Still nauseous and occassionally dizzy, but very happy to be home...and even happier to have a bath. (that goes for both of us.) He is still making pretty frequent visits to the potty, but the cramping seems like it is slowing down. He's having a lot of trouble with drinking. He drinks a little and then feels really full, which leads to nausea, etc. And then he's afraid to drink anymore. But, he is already complaining of being very thirsty, which makes me want to scream "then drink." But I know that he is trying his best.

Chloe was doing really well over the last few days. Tonight she is happy, but has the poos again. The doctor said that they will come and go over the course of two weeks, so I am praying that it was a one time deal and that tomorrow will be as good as the past few have been for Nana.

Jeremy and I are both showing signs of being sick, but neither of us are sure if it is actually the virus or the stress of this whole situation. He obviously is feeling incredible guilt and pain at not being here through all of this, although there are good reasons for him to not miss work if I am able to manage without him. Regular bills, medical bills, not to mention the money that goes into visits and hospital stays. He is so stressed and I hate that we cannot change this situation.

Both of the kids are in bed and I am heading there very, very soon. I am so exhausted I don't even have words to describe it. But I am thanking the Lord that we are home again.

Please pray for peaceful sleep for our entire family, for Colin to drink better, for Chloe to wake up as healthy as she has been for the past few days, for both of the kids rashes to heal, for Colin to not have the dizzy, yucky feeling anymore and for my hands. I know that last one sounds simple, but from all of the hand washing and area sanitizing, my hands (which are usually bad in the winter to begin with) are cracking really badly and starting to bleed and it would make so many things easier if they would heal. Please pray mostly that this passes quickly and doesn't reoccur, which is our new worry. I guess immunity to this virus if hard for little bodies to build and siblings can continue to pass it back and forth for a really long time. Please pray that this doesn't happen here.

I have so many thanks and updates from the past few days, I could write a novel, but I have a few calls to make and need sleep badly, so I will add those tomorrow.

Updates

Hey guys its Alicia here with a few updates... Colin slept well last night, a whole six hours and got some much needed rest. Unfortunately he still can't seem to keep anything in his belly, but the vomiting has stopped. They are putting him on a special diet today and taking him off the IV. If he can eat/drink enough on his own to stay hydrated he will come home. If not he'll go back on the IV and they will try the diet agian tomorrow. So let's all prey the diet will work and both Colin and Christi will be able to come home soon. Chloe is also doing better, she slept all night as well, and is almost back to normal. No formula yet but hopefully by the end of the day, we' ll keep our fingers crossed.

Doctors and more doctors

Colin was moved to Children's today at Christi's request.(by the way it's Natalie again-I've relayed the comments to Christi-thanks everyone!) She just wasn't feeling at all at ease being in Kittanning. They were taken via ambulance to Pittsburgh. Upon arrival Colin smiled and said he was happy to be there(in more of a comfort zone). He has something called rotavirus which is apparently also what Chloe has. He is still on IV fluids. There is not a definate time for arrival at home. They just want him to be well. The virus can last up to 2 weeks(hopefully not in this case). Both Christi and Colin will get much better rest tonight! Chloe is still being cared for by her lovely Nana and Papa. She was more playful and had a full 8 hours of sleep last night! Her very routine diaper changes have slowed considerably(which makes her mommy very happy and I'm sure Nana too)! Hopefully she is on the mend as well. That's all for know. Now that Christi is at Children's she is hopeful that she will be able to update this on her own tomorrow(even though I have no problem helping her out, I might be fired!). Pray that the kids will be 100% very soon and that they all get a better nights sleep!

Another trip to the doctor

Hi it's actually Natalie-I'm being the surrogate blogger tonight. Christi had next to no sleep last night. Colin is now also carrying around the flu-bug much the same as Chloe. It's nice for siblings to share, but in this case they could have not shared and Christi wouldn't have been at all disappointed!! Chloe had a doctors appointment today and again was diagnosed with the flu, but no dehydration. She is at home with Nana(Christi is very grateful she has such a wonderful, caring mom). Colin on the other hand did not get away from Chole's appointment so easily. He was found to be dehydrated and the doctor wanted to admit him to the hospital, which is why I'm filling everyone in. He is on IV fluids to rehydrate. They want to keep him there until he is able to hold at least fluids down and in. The doc said it may be one or two days, but didn't want to really commit to that. At this time this is all of the information I have, but I will update as I get more info from Christi. Please pray for both of the Carnahan children to get well and also for Christi to not lose her sanity!

Still just the flu.

Yep. Took her back to the ER. She quit having wet diapers, although we have gone through more than 30 today. And, she has started vomiting again. Really nervous. They still think it's just a virus, but the doctor said at this point she is not yet dehydrated and so there is nothing more we can do but to deal with the yucky stuff until she gets worse. I pray she just gets better. She is resting now, although I just laid her down and she hasn't made it longer than an hour all day. So, I'm off to do another load of laundry.

I'm cancelling tomorrow's appointment, which is a bummer because Colin was looking forward to trying out the BAHA.

Continue to pray for Alivia. No word all day and I can't get them off of my mind.

Dates and Sharing the News.

For those of you keeping track, here are upcoming appointments:

November 7: Audiology, to pick up BAHA
November 11: Otologist, 2nd opinion for atresia correction (opening of ear canal)
November 17: Orthopedics, new doc recommended by neurosurgeon to look at spine to decide if fusion he will eventually need done (first we've heard of this) should be done at same time as tethered cord release. We already had this appointment set up, ironically, with the same doc she wanted us to see. We were looking for a new ortho. doc because we wanted a second opinion on how to approach his scoliosis. Not sure what all the fusion is about, will tackle that when we get there. (or between now and then, or when Chloe stops poopin :)
November 21: Chloe's one year checkup
November 27: NEUROSURGEON: Preop
November 29: Opthamologist, just a checkup
DECEMBER 15: SURGERY: Release of Tethered Cord

Some of these may change. I might move some back depending on what my wary mind and body can handle. Some of the ear and the eye appointments aren't necessary for right now, so I may move them back.

Chloe is still sick. Eating fine. Just comes right out...every 1/2 hour to hour. Needless to say, I've been doing a lot of laundry and she's been sleeping very little. Which is really wearing me down, but I am thankful that we are home and it's only the flu. AND, it hasn't spread. Which in the oddest way, makes me nervous. Not that I want anyone else to get it obviously, but then it would confirm it's the flu. I am so nervous about sick kids right now. I need to stop waiting for the worst. Please pray for me on that...I need my optomistic mind back. Just so weird for me and Colin to not have it. We'd catch fire if we stood close enough to the oven. Just the way we are. So it's weird that we haven't gotten it. But, I'm thankful for that. Very thankful.

We shared the news of the surgery with Colin last night. We had actually decided to wait, but oddly enough he brought surgery up out of the blue and it seemed like as good a moment as any. He was a little upset at first, but immediately went into "Colin" mode and began asking questions. Once he had all of his answers, he was fine with all of it. Such a relief. I should have known that he would be fine. Not sure why I doubted it. He is so strong. Much stronger than I.

Got on to update for our family.

But need to address a much more important issue right now. A friend's daughter, who has been fighting a rare form of leukemia, came down with the flu on Friday and then pneamonia and is not doing well. She is in the hospital and is one step away from ICU. Please pray now for her. We all know there is power in prayer and their family needs that power right now. Please pray for rest and restored health for Alivia and the other members of her family who are sick and unable to be with her right now. Please pray that her mom remains healthy and is able to rest as well to do just that. Thanks.

Chloe is still sick, but nothing in comparison. Colin is well and Jerm is off to work. I will post more later, baby girl is calling.

Chloe has the flu.

Did I mention that? Anyway, her overly paranoid Mom took her to the ER because she was really, really tired. I mean slept from like 7:00 pm last night until 11:40 am today. She doesn't want to play, or smile, or babble. She is really, really tired. So, I thought something major was wrong. But she just has the flu. :) I guess it does that to you, duh! But, now I know...I guess that's one less thing to lose sleep over.

She had only had a total of 11 ounces of Pedialyte today...until we got home. I figured she hadn't thrown up in the past 2 days, so I fixed her a full bottle of formula. She sucked it down and was crying for more, so I gave her a little bit of banana baby food. (I think that's what your supposed to do for the potty problems. Brat diet. Right?) She ate those too. And she is back to sleep. So far she has kept it all down and in. Maybe she was just tired of the Pedialyte and needed real food for energy. I feel a little crazy right now and apparently it is affecting my normal "Mommy" mind. :)

Lots of thanks! Thanks to Mark for taking Colin to lunch yesterday. He had a blast and the break was nice. Thanks to my Mom for dinner yesterday. So good! And thanks to her, Jim, and Seth for visiting even when our house has germs! Thanks to Aunt Alicia and Jason for playing with Colin while we headed to the ER and for taking him to Mark's birthday party. Happy Birthday, Mark!!! Thanks also to Debbi for dinner tonight! So delicious. So nice to have "real" food and to not have to worry about making it. And thanks most of all for all of the prayers!

What I Know.

I've been doing my research, so far here are some of the answers I've found to questions I've had. Sorry for the medical lesson, but I know many of you have the same questions.

What is a Tethered Cord?

The spinal cord fills the spinal canal throughout the neck and mid-back regions. At the upper portion of the lower back (the lumbar region) the spinal cord itself comes to an end. At this point, the end of the spinal cord is free, i.e. it is not attached to any of the surrounding structures. A "tethered" spinal cord is a spinal cord that is tightly fixed at the lower end so that there is not a normal amount of movement of the lower end of the spinal cord. This results in a tight pull or stretching on the lower portion of the spinal cord and can cause neurological damage as the tightness increases due to continued growth of the spinal column.

Why do we have to do surgery?

The only effective treatment is surgical. The surgery for untethering of a spinal cord has two goals: first, to stop any further neurological deterioration, second, to hopefully see some improvement in any lost function. Once neurological function is lost it may never recover. This is why surgery is indicated when there are early signs of neurological change.

Can it happen again after surgery is done?

Apparently yes. It can keep happening until he is done growing. Teenage years. Please start praying now that it doesn't reoccur. My other big concern here is I believe that an MRI is the only way to determine tethering...I really don't want MRI's to become a more regular part of our routine. I don't know if this is avoidable, but until we find out, please pray with me that it is.

What has caused Colin's tethering?

There are many different causes. His is caused by fatty filum (I spelled it wrong earlier) or thickened filum. There is a small, threadlike piece of connective tissue that connects the lower end of the spinal cord to the sacral end of the spinal canal. This is called the filum terminale. If the filum is thickened and is shorter than normal, it is usually filled with fat and it pulls down on the spinal cord, causing tethering.

Here is the best news I found today:

This surgical procedure is usually the simplest of all untethering operations. A single level of bone is removed in order to allow access to the tight and thickened filum. The filum is easily identified and cut. The filum has no neurological function so the procedure is unlikely to cause any neurological damage. Still super scary, but that is a least promising and relieves my worries regarding the damage of anything else.

Thanks for all of your thoughts, prayers, kind words. Chloe is still not feeling well. This is apparently not the 24-hour kind of flu. She is barely drinking and is not at all herself. Very tired, very quiet, very unsmiley. Very worrisome for her Mommy. Pray especially for Chloe tonight. This Mom needs her baby back.

A Tethered Spinal Cord.

That's our news. The neurosurgeon did call last night. I didn't post because I needed to take some time to absorb the reality of it all. Before Christmas, my baby will have to have surgery on his spinal cord. So scary...

Apparently, his sarynx (the center of the spinal cord) is increasing and the fat in his phylum (area at the bottom of his spine) is getting bigger, too. I honestly don't really understand it all yet, but will give you more details as I research. Anyway, this all is causing his spinal cord to tether at the end, just like a rope.

The surgery will release the spinal cord to keep it from getting worse. If it gets worse the risks are loss of bowel and bladder function as well as a loss of function with his lower extremities. She claims the risks with the surgery are low, which blows me away. I mean they'll be doing surgery on his spinal cord. The thing in our body that controls everything. The main stream for how our body works. So scary to me.

Please pray for strength for me. I am feeling unbelievably weak right now. Please pray that Jeremy and I are able to find the right words to share this with our boy. My heart breaks at the thought. Please pray that Chloe feels better today. She was still throwing up last night and only ate 2 ounces today.

No News.

Still nothing. I am assuming at this point we will not hear anything until next week. So, I'm going to try to get over it. No choice I suppose but to do just that.

Thanks to my Mom and Pa-Pa for bringing over sickness supplies! Love the loving Mom that goes above and beyond. You ask for diapers and baby food and get diapers, baby food, Desitin, Antibacterial soap, Lysol, and Pedialyte in two flavors for my picky kids. All hand delivered to the front porch. What a good Mommy! Don't know where I'd be without you. So thankful!

Chloe drank some formula and is sleeping now. Colin is still feeling fine.

Please pray tonight for the Haughery family. Their baby was hospitalized today with pneamonia. My heart goes out to her mom. Pray for a quick recovery and complete healing from leukemia. How long today must have been for them all.

Thankful that we are all at home. Thankful for my wonderful friends and family who chatted and e-mailed and talked to me throughout today...thanks! It's the simple stuff that makes hard days easier. I appreciate the simple stuff.

Sidenote: Chloe has the flu.

Not sure how I missed mentioning that today! Her first flu. Maybe it's just a 24 hour thing. Lots of firsts for her this month, yet still no first tooth! Poor baby girl is still all gums! She has been napping a lot today, so she must be feeling ok. (Thus all of my blog activity.) I need to keep my mind busy today. Praying it passes quickly and doesn't spread.

bright and sweet.

An e-mail from Aunt Alicia:

i just read the blog, and so sweet i forgot he was ever that tiny, i used to love to give him little kisses on his ear

this is one of my favorite pics i have of him, dont know if i ever sent it to you, i have tons more, but i love this one, so bright and sweet, just like he always is


Just what I needed on a day filled with worry. No news from neurosurgery. Hopefully no news means good news. I called today and his doc is in the OR, so the nurse said we might not hear anything today. Could be a long weekend.

My sweet, sweet baby boy!

Evie, Colin's Mom-Mom, found this picture and sent it to me today. I had never seen it. What a sweet baby Colin was. So perfect! I forgot how plump his little lips were! and that cute button nose!


I will never forget the first hours I had alone with him. I unwrapped him, just like this and examined all of his little bitty toes and fingers. I was so amazed at how exactly like Jeremy's they were. So amazing! It was like someone took the hands, feet, legs, arms, lips, everything of this six-foot-two man and shrunk them down and stuck them on this little angel. It was so bazaar to see the things you love in one person recreated in this little bitty person that you already love just as much.

How blessed I am to have this boy! I love him so. And, I miss his little ear! So much that this picture brought me to tears. I wish that was something that we never had to change. My heart aches I miss it so. You see, to us it was never abnormal, it was Colin. Plain and simple. And I miss it.

I hate the waiting game.

No news from neurosurgery yet. I hate the waiting game. The nurse told me she may call later into the evening. Still waiting...impatiently.

Thanks so much to everyone who has sent responses for Colin's gift! It means so much! I can't wait to put it together!

We are home and my babies are in bed.

Today went ok. Colin is happy to be home and to eat! He went a full 24 hours with absolutely nothing but water! Poor boy! Things went well with the MRI. The neurosurgeon will call tomorrow to review the results with me. Things got too late today. They had a hard time getting him to wake up and when he finally did, he needed oxygen for a while and then was vomiting and nauseous for a good while. They ended up having to give him anti-nausea medication, which of course made him more tired and then we kind of got stuck in an endless circle...which eventually ended. Thank goodness. He woke up asking for candy. :) Which of course he couldn't have. I let him have one Spongebob Gummy Candy before putting him to bed. That surely can't hurt. :) And, he was more than deserving of a late night snack.

He did really well. He was a little freaked out about the anesthesia this time, but we were in a completely different area of the hospital than usual and I think that was mostly what through him for a loop. Nonetheless, it took six of us and many tears from both me and him before he was sedated. I hate that. I will never, ever, ever, ever get used to having to assist in holding my child while something horrible happens to him. Never. Usually I just refuse, but somehow, this time, I got stuck in the middle. Mostly because he is getting pretty strong and absolutely refused to let go of me...hair and all.

Thanks to Nat for watching our girl today. So nice to not have to worry about her too! Thank you, thank you, thank you! A note on Chloe: she woke up this morning and was holding a card she got from Great Grammie Carnahan for Halloween with a cat on it. And she said: "Dat" and I asked what kitties say and she promptly replied "Mow" (rhymes with wow) So cute. And, she was so excited to see her brother tonight. Even more excited to see him than me. I love that. Seeing him sent her into silly, sleepy giggles. I love that too. Good end to a bad day...with giggles and smiles from them both.

So happy to have both my kids safe and sound and in bed. Tomorrow's another day.

Go ahead for MRI.

The ped doc gave us an ok for the MRI on Wednesday. We hadn't ever seen her before, and she was a little hesitant to give the ok since he was just recently seen for branchiospasms. But, when I asked her if she'd ok him after examining him if she didn't know about the previous illness, she said yes. His lungs are clear (we were able to stop the albuterol on Saturday) and his sinuses were as well. She still asked about postponing, which would be fine, but this is the healthiest he's been in over a month and if we postpone, they'll most likely reschedule for a month or more later, which will put us in the center of winter...and chances are he'll be sick then as well. So, she is requesting that a Children's nurse and the anesthesiologist re-examine him Wednesday morning to be sure he is clear then as well. I'm confident everything will be fine. I know that she was only hesitant because she doesn't understand his history. Everything will be fine.

Chloe is feeling much better today. She was much more playful and has started talking a little more (baby talk - just so you didn't think she developed a vocabulary recently) and she ate like a champ today. She also slept all night last night, which meant I got my first full night's sleep in a while. As a result, I am much happier today as well.

The weather was so nice here today. While she napped this afternoon, I actually got out of the house and did some yardwork. It was nice to be out. Colin got to head to the park with a friend for a while after school and was thrilled about that.

Thanks Mark for stopping by for a visit tonight! We're all always happy to see you.

A Gift for Colin. Please read!

I have a favor to ask of all of you for my boy. I am going to create a scrapbook for him to help him remember how much all of us love him. Over the next few weeks, I would like to collect from anyone willing to participate, a little statement about the things you love about Colin. I am going to compile them all in a book for him with photos - either supplied by you, or I will try to add some from my collection. That way, when he's having a rough day, he can look through it and read about why those he loves the most love him the most too! So pass this on. I want to be able to stuff his book full. This weekend he began for the first time asking some major questions about his differences and I am hoping that this will be a reminder for him, whenever he needs it, about how much we all love him for who he is.

Please remember, your words don't have to be profound. They can simply be one word statements about the qualities he possesses that you are thankful for or love yourself. You can either post them here as a comment to this post, e-mail them to me, or send them by mail. As I said, I will collect them over the next two weeks, so please take a minute to share your thoughts for Colin.

This is really important to all of us, so please participate. This will be something that will help build his self esteem for years ahead. Please be a part of Colin's book! Thank you all in advance for taking the time to do this for him. I am sure he will thank you later in life.

Happy Halloween!

The most fierce gladiator on the block!


Goofballs!!!


Little Miss Muffet...watch out for this cutie little spider!


Oh, that funny brother! He's the best!


We had a great day...made cupcakes, cleaned a little, decorated for Halloween, and played a lot. It's been a long time since we had such a relaxing day. It was so much fun! Thanks Mom-Mom and Uncle Seth for taking Colin trick-or-treating! He had a blast!

Jeremy won't be home this weekend. We'll miss him, but Colin spoke the truth tonight: "Mom, I really miss Daddy, but I'm kind of glad he's not home so he won't have to check all my candy." Daddy's checking usually includes a lot of taste tests! :) So cute.

Just a bad cold...Colin back to doctor on Monday.

Thank goodness. Chloe's pediatrician examed her today and took a look at the ER reports, including the x-ray results, and has concluded it is just a really bad cold. We are going to continue on with the antibiotic and hopefully she'll be feeling better by Monday. She ate really well today. 18 ounces of formula (which is nearly a record for a normal day) and a piece of cheese. :) She's her Mommy's girl.

We head back to the doctor for a history and physical for Colin on Monday, so if need be, I'll ask them to recheck Chloe then. Can't believe this month is already over, which means Colin's MRI is quickly approaching. Sort of snuck up on me. We may have to postpone it if his doc doesn't give clearance on Monday because of this month-long chest cold and cough. They have to be sure that his airways are clear since he'll be going under general anesthesia. He seems to be doing much better. Still coughing, but we've backed off of the nebulizer to only two treatments a day.

Jeremy headed back to work today...a little sad about missing his first trick-or-treat with Colin. :(

Long Day

Poor Chloe got worse as the day went on. We ended up in the ER, because her doc didn't have any openings. She is having such a hard time breathing that she can't even really cry. They x-rayed her chest and apparently she has a "pocket" of the beginnings of either pneamonia or rsv. The ER doc started her on an antibiotic until we can get into the pediatrician's in the morning. Feeling so bad for her. Praying for a restful night for her. Today was long.

Luckily, Jerm came home this morning. So nice to have him to help with both of the kids. Not to mention, I am in need of lots of hugs right now.

Chloe's First Cough

Chloe woke up this morning with a runny nose and cough. She has never had a cough before. It actually took Jeremy and I a while to figure out what the sound was. It's funny...I could pick Colin's cough out of a room of 50 kids, but we had never heard her cough before. Kind of a strange first. Jeremy kept running into Colin's room to check on him...finally we realized it was coming from her room.

She has no fever. So, we're just waiting to see if it progresses any further. She's not really drinking much...only 8 ounces today. Not eating at all, and sleeping a bunch. She's waking now, so I'll update later.

Chloe's First Oreo

Thanks so much Pa-Pa! I love your cookies, too!

Revisiting Holland.

Hate to go back to the terribly depressing blog from last week (10/19.06: Welcome to Holland) but I realized today that the newsletter I got didn't include the ending, so I am going to post that here, but I also wanted to revisit the whole thing in the light of a brighter week.

After re-reading my post, I had to chuckle, not that any of it is funny...just at my sudden boldness. Nothing like going from nothing to all at once! So sorry everyone! But, I guess that's how it is. Good days, bad days. Good weeks, bad weeks. On most days, the emotions are in check and then there are some days where I get so out of whack that I feel overwhelmed and out of control. I guess you got that though!

So, now that things have calmed a bit, I wanted to add some more insight to that post. After reading that essay again and again, I have sorted my thoughts out a bit. I do feel that way, raising Colin, of course has a lot of difficult things I never expected as a mother. But, it is also filled with so many amazing things I couldn't have predicted.

Raising Colin has taught me so much about life, about me, about my husband, about who friends are, about what's important, about my faith. He is amazing. I know all parents say that about their kids, but he truly is. There is something so special about him. They way he cares, the way he looks at the world, the way he loves. It is so genuine. So clear. So open. I know that there are great things in store for this boy. He is going to make a mark. Change the world. I have no doubt about that. He is going to take Italy by storm. I can't wait! (And I'll be the proud mama in the background shouting "He is MY son!"

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.


And here's the part I didn't have:

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by Emily Perl Kingsley

But, today, it doesn't matter. What I've come to realize is that although I may be living in Holland...Colin is on his way to Italy. And we all are blessed enough to get to be a part of his journey!!

Remarkably Better. Thanks!!!

Both of the kids are remarkably better and we are unbelievably thankful. So off starts another week. Jeremy made it home early Sunday morning and will head back in a matter of hours. Thankful for the visit as well. Thanks to my mom and both of my sisters for dealing with my break down last week. Love you all! Thanks to Nat for always being there, even when you're dealing with the ups and downs of your own life! Thanks to Shannon for always being there even though you're so far away! Can't wait to see you! Thanks to Kim and Rach for being available for a much needed late night chat on an otherwise lonely night! Thanks to my hubby for working so hard when he'd rather be doing anything else!! Love you! Thanks to Grammie C. for taking care of Colin for me on Saturday for a much needed scrapbooking break. I can think of noone else I would rather have caring for him! Working on our family albums is very therapuetic for me. Reminds me of how much I have to be thankful for. My life if full! and for that I am very thankful!

Series of Updates

The doctor prescribed an antibiotic for Colin to clear up a sinus infection and in preparation for possible pneamonia. If he is not remarkably better by Monday, we'll head back for a recheck and possible chest x-ray to check for fluid in his lungs. Other than the cough, he is feeling fine. Still a little mean from the steroids, but once again, it makes me laugh...mostly because he's not a mean child by nature, so I find it humurous. (and a little exhausting.) :)

Chloe was prescribed lotion for yet another staph infection. She is napping now. Tried to get Colin to do the same, but the steroids would have none of it. Mommy took a mini-snooze while he watched a show...I needed it. Feeling better now.

Also got a call today from neurosurgery and audiology at Children's. He'll head down on November 1 for a full-skeletal MRI. We had this done 3 years ago as well. They'll be checking his spinal cord and pretty much the rest of the bones in his body to be sure that his growth is not compromising any of his other systems. I think I'm nervous more now about this than I was then. I guess because we've had enough things "pop" up recently. Plus, he'll be sedated. This time under general anesthesia. The process takes 2 to 3 hours and he has to lay completely still.

We'll head back down on November 7 to audiology. They have his new BAHA hearing aid. They'll be helping us understand how it works and attempting to help him begin to get used to it. I e-mailed his school advocate (can't remember her real title right now) so that she'll be prepared to assist him in anyway possible as he returns to school with it. Nervous as can be about that. Sometimes the social parts of this whole thing are harder than the medical end.

We're heading to my sister's for dinner tonight and to celebrate Tanner's (my nephew) birthday nearly a month late! So sorry Tanner! Things have been crazy and your celebration suffered! We love you!!! I'm excited to visit.

Back to the Doctor

Colin coughed all night last night. If anything, it seems to be getting worse. He woke up with a temperature this morning. Poor kid. He says his chest isn't hurting, but you can here all of that stuff inside. His stomach is hurting something awful, I'm sure from the now like 4 weeks of coughing. So, I guess we'll be heading to the doctor.

Chloe's not up this morning, but she developed an abnormal diaper rash yesterday. I called the pediatrician yesterday and they think it might be yeast, but not sure where she got it because I guess it's typically something that comes from being on an antibiotic, which she has not. I suppose they may see her as well.

Jeremy called this am...and I had a breakdown. Nothing like burdening him with something he can't do anything about. I'm tired. I miss him. Oh, happy Friday!

Please, say a prayer for Colin that this gets better and goes away. And, miss Clo too...the rashes make her cranky, and she's not a cranky baby by nature.

Welcome to Holland

Just got the mail today and as I was reading through a newsletter, I came across the essay below. It brought me to tears. I have the hardest time expressing, even to those closest to me, how much I am affected by Colin, how it has changed everything in my life. This is the closest I've come and since I tend not to express myself the way I should on this issue I thought maybe this would help me do just that.

I am not intending to make anyone feel bad through this post, so just keep that in mind when you're reading this.

But, most days, I really feel like no one around me gets this. I can't ever really talk openly about it to anyone. Jeremy understands it and deals with it in his own way, but even that is different from the way I deal with it. Most people downplay it, because that's the socially correct thing to do. A lot of people avoid it. And many people think I make a bigger deal of it than it is...his condition is so mild, you can barely tell you say. But, I know! It's there! He knows! It's there! It makes me cry or want to cry everyday, because this is and always will be his life. Full of doctors and probably surgeries, things popping up all the time. Things always going a way you didn't expect. He'll always get looks; people will always ask questions. And, I as his mom have the hardest time with the answers. Mom's are supposed to have the answers, but on this, I don't. And, quite honestly, It's just not fair. And, most days I hate that.

No matter how many surgeries he has, the looks and questions will always be there. I love him the way he is, but hate that he has to deal with any of it. He deserves normal. I know he has a good life, and I intend to make sure that it is always that way. But, that doesn't change the fact that he will always have to deal with this and noone, not me, not his Dad, noone can change that. And, plain and simple, it's not fair. Not at all.

I'm not looking for pity or as I said trying to make anyone feel bad. You shouldn't have to get it. How can you get something you've never done? Noone expects you to understand physics unless you've gone to school for it. I get that. I just wish that someone else got me, understood that this all consumes me. Although, this is honestly something I really never want to have in common with anyone else. I think about it constantly. I hurt about it daily.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

by Emily Perl Kingsley

Colin - The Debater

Colin is still coughing a lot. I'm going to call the doc in the am if it is no better through the night tonight. He was up quite a bit last night, but said he was feeling fine this morning and headed off to school.

Yesterday was a long, frustrating day. This medicine makes it really difficult for him to concentrate and causes him to be a little on the mean side. He had to sit in time out yesterday for using mean words, and Colin - The Debater came shining through as he proclaimed, "well, I think it's mean that you would put a sick little boy in time out when he isn't feeling good at all!" Had to chuckle at that one, but he still did his six minutes.

Yah! Good News Here.

Colin headed off to school today...still couging, but feeling much better. Today should be a long day for his teacher. :) The albuterol makes him quite hyper. If nothing else, he has energy. Yesterday was a long day to say the least, but he is sleeping much better. Last night he didn't cough at all from midnight until around 6 this morning. Or, I should say I didn't hear him...I was a little tired. :)

In my last post, with everything else going on, I forgot to mention that we received approval on Saturday from the insurance for his BAHA hearing aid. That means we should have it and be able to try it out in a matter of weeks. I'm so excited for him and thrilled that something went smoothly with the insurance for once. His primary and secondary companies denied it, but it was picked up by the third. Yah!

Seeking: Rest

This weekend was full. Saturday morning, Colin attempted to head back to basketball after three weeks out because of his cold/cough.


He played for a while, but ended up having to sit out most of the game at the end because his coughing wouldn't give up. It got worse as the weekend progressed, and today we headed to the doctor. He is having a lot of trouble breathing and can't seem to sleep well, so the doctor told us to start using his nebulizer and albuterol every four hours, at least through this week to stop the spasms he is having in his lungs. He suspects he may have a sinus infection as well, but wants to see if this will help clear things up before starting him on an antibiotic. I feel so bad for him. The coughing was so bad yesterday that he actually vomitted. Hopefully the two doses he gets in before bed will help him sleep. If not, we'll be up every four hours tonight as well. Although we may end up awake anyway, the albuterol is a steroid and often causes him to lose sleep anyway.




After basketball, we headed to the pumpkin patch with Aunt Alicia and Jason to pick pumpkins and headed home for a day of carving. It was a lot of fun and the pumpkins turned out great! Thanks for spending the day with us guys! We all had a blast!


Jeremy made it home Sunday and returned back to work today. It was nice to have him home, but for some reason the past two days ended up exhausting me more than relaxing me. It's so difficult trying to cram in quality time when there's laundry that needs to be done and groceries to be bought before he has to return. We're all tired, but glad that work allowed for him to return home again this week. It was nice to have someone to be awake with during the coughing spells last night...someone to share the worry with, I guess it sort of lifts some of the burden. Our smoke detector ended up defecting last night as well. Ha! What a night! So, after he checked on Colin, Jerm could hear Chloe stirring. He got her out of bed so we could play with her for a little bit, mind you this was well past midnight. She was so groggy and giddy, and very cute I might add. :) She was patty-caking for him and we both got a big kick out of it. She is such a good baby. After a little while, I just took her in and laid her back in her crib. She rolled over and went right back to sleep. What an angel-baby!

Praying for a good night's rest for everyone!

Do you believe?

The


came last night!


and Colin was thrilled! He woke me up this morning around 6. When he went to check his little tooth pillow, the money went flying and was lost. We basically had to strip his bed to find it. All is well, and $5 is the going rate for that first precious baby tooth.


Today, as always, was such a wonderful day with Chloe. For months, we have been trying to get her to clap, and today at lunch, without any prompting, she mastered it on her own. She is, without a doubt, a Carnahan. She will not be pushed to do anything until she is good and ready. It was so cute, and she was so proud. She just kept doing it over and over again and giggling, which of course made me giggle. I love this baby. Can you tell?!?


I have a button that has Colin's t-ball picture on it from a few years ago. Chloe discovered it today and claimed it as her own. She was screaming for it, so I cut the pin off the back. She carried it around for the majority of the day...kissing it and talking to her brother. So cute!

When Colin got home, I surprised him with a trip back to Petco for a new tank for Philbert. They were running a special on 40 gallon breeder tanks, which as you can see from the picture below, of his old tank, he needs more room. I figured Philbert was getting enough play on this blog that he was probably deserving of a picture. :) Anyway, when you bought the stand, which you pretty much have to have with a tank that large, you got the tank for free. He was so excited and can't wait until Sunday when Daddy comes home and can set it up. This child is animal obsessed. He has declared that he no longer wants to be a palentologist. He is planning on becoming a veterinarian, so he can have his own big building and be the boss of other people. Sounds like a plan to me, and he is, definately well suited for the job.


After coming home, we went straight to my sister, Sherri's, for dinner. Thanks again Sherri and Jeff. And then dropped the girls off at Na-Na and Pa-Pa's, thanks as well guys!!! And then we took the boys to the haunted house here in town. Colin was not at all scared...for his first time, I was surprised. He said he wasn't scared "because his Dad jumps out just like that all the time, so he must just be used to it." He still thought it was fun even though the scare-factor wasn't there.

Calling All Tooth Fairies

Colin lost his first tooth! We've been wiggling for around 4 months now.



He was crying, honestly crying, because it hurt. He's been wiggling a lot more over the past couple of days. Cousing Tanner just lost a molar and I think that was major motivation. I asked if I could wiggle it and when I did, it turned sideways, which of course sent him into a tantrum. (No drama here folks! Whose kid is he anyway?) So, I basically had to chase him down and sit on him to pull it out. And then of course we had the drama of the blood. Oh, that first tooth...I tried to get him to admit that it really didn't hurt. He is holding firm, claiming "you know mom, I don't ever cry unless it really hurts!" If only that were true in all situations!

So, rumor has it the Tooth Fairy gives $5 these days for that first prized tooth!!! We shall see. Na-Na and Pa-Pa were called to come and verify that the tooth had indeed been lost. Check! (and to supply the Fairy with $5 so she didn't have to venture into the cold!) The temperature has been steadily dropping today and there were reports of flurries.



So, the kids and I went out and cut the last of this year's zinnia's so we could enjoy them inside while winter takes it's toll on the plants from which they came.



Otherwise a pretty quiet day. Chloe and I cleaned (or I cleaned and Chloe protested the use of that frightening vaccuum) and had lunch with Aunt Sherri...who by the way, is without a doubt pregnant. She is getting rounder by the day. Two babies in one year. Crazy. They'll learn the sex by the end of the month...I'm guessing a boy. Time will tell.

A Good Day

Chloe started yesterday with a nice long nap. Seriously, as soon as we got Colin off to school, she headed back to bed. I guess raining, chilly days do that to a lot of us. She slept until 12:30, so I finally got back on track with my medical transcription schoolwork. I had a few weeks of downtime...but, we're going strong now. (Minus the time I take to do much more important things...like blog.) :)

We played most of the afternoon until Colin came home and then we all worked on Colin's homework...Chloe practiced counting cheerios while he counted all of the clocks and watches in our home.

Thanks to Sherri and Jeff for watching the kids so that I could go to dinner with Mark, Alicia, and Angel. And thanks for the invite, Mark, I had a great time. It is so nice to relax and talk to adults! Alicia, you have officially been blogged by the Carnahan Clan. The more you visit, the more hits you get!!!! Come often! :)

Got to talk to an old friend for a while last night. It is always so nice to catch up! We need to do that more often, K! And, as always, Nat, thanks for keeping me company late-night while the men are off foraging for food! :0) I am so thankful to have you in my life. You're my everyday life saver and honestly, you keep me sane...who do I call when I need a reality check...you. It was just a small plane. :) Everything is fine. Thanks always!

I think the first winter colds have officially left our home...everyone started the day sniffle free. Colin is still carrying on the cough. He tends to do that, but we're heading into week 3...praying it goes away soon.

Girls Just Wanna Have Fun

My niece, McKenna, came to visit for the day today. It is so much fun having the girls so close together. It was a little hectic when they were younger, and don't get me wrong, it was still an exhausting day, but it was a lot of fun watching them play today.






They are on very similar schedules now, so they napped at the same time, ate at the same time, and played the rest of the time.


Colin had a great day at school today...gym day is always a good day, according to him! Mark stopped by later in the day for a quick visit and Na-Na and Pa-Pa stopped in as well for a surprise dinner. It's always nice to visit.

Geneticist...check

Great appointment today...went through the checklist of specialists with the geneticist, who was extremely nice and thorough. She basically went down a list, which we should have had the first time around, with the not so thorough geneticist. Our goal, to be sure that we were up-to-date and in contact with all of the necessary specialists.

Ear, Nose and Throat...check
Orthopedics...check
Neurosugeon...check
Otolaryngologist...check
Opthamalogist...check
Craniofacial team...check
Geneticist...now a check
Cardiologist...they are looking into a follow up, but basically check.

So, looks like we're good to go for now. It was a good appointment, for once, someone made me feel like we have had it under control after all. Nothing missing. Yah! Chloe did really well and we headed to Petco after it was all over seeking a new beta, who is happily floating in his new home.

Colin also picked 10 feeder fish for Philbert, our turtle, and spent an hour watching him eat them one-by-one. So much fun...he was actually squealing like he used to when he was little. Ahhh...the simple things in life.

This weekend was nice. Nothing elaborate. Jeremy made dinner Saturday and we watched a family movie and a non-G rated movie after the kids went to bed. It was nice to have some low-key, calm, uninterrupted family time. We are on to week 5 without Daddy. Chloe still isn't adjusting. As far as she is concerned, he is here for one reason and one reason only...to hold her. She caught him off gaurd on Saturday morning with her first deliberate little kiss. He didn't understand what she was trying to do at first and tried to move away. She made it very clear that he was getting a kiss...baby spit and all...by protesting with a growl and moving his face back to hers. So cute!

Translation

Colin seems much better today. Couldn't sleep last night, so I actually ended up looking up much of the medical jargon. I should have just done it right away. I always end up thinking about it until I get the definitions. So, here's the translation. It states:

His left orbit [eye socket] is elevated somewhat greater than the right. His left cheek is somewhat hypoplastic [pertaining to the underdevelopment of tissue]. His left ear bas been reconstructed with otogenous [originating from the ear] cartilage. [which is untrue...the cartilage is from his rib.] His mandible shows a 5 degrees upward cant with minimal change to the maxilla. His palate shows some hemiparesis [paralysis affecting only one side] on the left side. His cranial nerve exam was difficult because of inability to cooperate. (Of course, he was playing shy. We all know better. :)) Intraoral examination reveals the presence of mild left hemipalatal paresis [same, paralysis on one side] with his palate elevating up and to the right. Perceptual velopharyngeal [pertaining to the soft palate and pharynx...pertains to speech] assessment today reveals symptoms of bilateral inconsistnet visible nasal emission and mild hypernasality [speech disorder occurring when the plate and pharnyx tissues do not close properly]. He obtained a weighted speech score of 2 today indicative of a borderline competent velopharyngeal mechanism.

The plan: we will begin monitoring the growth and development of Colin's jaws over time. He may be a candidate for a soft tissue balancing procedure in the future, as well as jaw surgery to level and align his dental planes.

The only speech articulation error noted during speech production today is interdentalization of sibilants (Christi's note: slurring of s's. Correct me if I'm wrong, but I'm pretty sure that a lot of younger kids have this and outgrow it.)

So there you have it. Nothing new really, except the shifting jaw. And the speech junk, which I am not concerned at all about. :) Obviously, Colin is having no difficulty communicating. Ha!

Jeremy is sleeping soundly in our own bed. Yah! Colin is concerned that he needs to be checked on consistently...I have assured him that Daddy has this sleeping thing down pat and can handle it on his own. If he's lucky he'll get 4 hours. Poor guy! I haven't even let Chloe see him yet. Once she realizes his home, she won't let him leave her side. At all...she misses him. Daddy's girl without a doubt.

I'll update after Monday's appointment, but I am off to spend the weekend with my WHOLE family!

A Series of Updates

Yesterday ended with Chloe's first trip to the ER. She's fine. More of a Mommy-freak out than anything. She loves standing in the bath, holding on to the side and then sitting with force so that the water splashes all around her. It always brings around a lot of giggles...from us all, except Jeremy, who usually worries she'll get hurt. (Fear confirmed) Honestly, I never expected anything negative to EVER come of it. The kids keep little plastic stacking cups in the tub, which by the way were made specifically for this purpose. As Chloe went to sit last night, one of the cups (upside down) slipped under her bum and actually cut her. And, of course, I freaked out. Apparently, that area bleeds a lot, so the water immediately turned pink and I freaked out. I couldn't tell what was bleeding exactly, or how bad it was, so Colin and I rushed her to the ER. We weren't even there an hour...thank goodness...the doctor basically just told me I freaked out. She's been fine today and I was glad that our biggest fear, the first potty, went smoothly, and the wound appears much better today.

Over the last 24 hours, Colin has developed a cold. Which, I am quickly beginning to believe may be turning into yet another sinus infection. So, we spent the evening fighting over medicine. Which, he eventually gagged down with minimal tears.

Which leads me to the final update. We received an update today in the mail of the summary from the Cleft-Craniofacial Team we met with on September 8th: Most of it is medical jargon, which I will look up this week, but I'm too tired right now, so I am just going to retype it. It states:

His left orbit is elevated somewhat greater than the right. His left cheek is somewhat hypoplastic. His left ear bas been reconstructed with otogenous cartilage. His mandible shows a 5 degrees upward cant with minimal change to the maxilla. His palate shows some hemiparesis on the left side. His cranial nerve exam was difficult because of inability to cooperate. (Of course, he was playing shy. We all know better. :)) Intraoral examination reveals the presence of mild left hemipalatal paresis with his palate elevating up and to the right. Perceptual velopharyngeal assessment today reveals symptoms of bilateral inconsistnet visible nasal emission and mild hypernasality. He obtained a weighted speech score of 2 today indicative of a borderline competent velopharyngeal mechanism.

The plan: we will begin monitoring the growth and development of Colin's jaws over time. He may be a candidate for a soft tissue balancing procedure in the future, as well as jaw surgery to level and align his dental planes.

The only speech articulation error noted during speech production today is interdentalization of sibilants (Christi's note: slurring of s's. Correct me if I'm wrong, but I'm pretty sure that a lot of younger kids have this and outgrow it.)

We head to genetics on Monday for a review of the breakdown of his diagnosis. Just to be sure that all of the bases are covered. Things seem to keep popping up, which I know we have been told to expect with his conditions, but the Craniofacial Team thinks that the new geneticist at Children's can help make us more aware of any outstanding issues which we haven't looked into yet.

The problem with GoldenHar, and Hemifacial Microsomia for that matter, is that they are both conditions in which an issue that wasn't present early on can develop over time just because our bodies change as we grow and Colin's bones, cartilage, growth patterns, etc. are different than the average person. So, as we've come to learn, most of this is just a waiting game.

Happy day tomorrow. Jeremy will be coming home for a few days. Colin is anxious to say the least.

A Friend Suggested We Move to Canada

Yesterday made that idea feel very plausible. Free healthcare. For everyone. No insurance claims. No bills to sift through. No companies to call. On the other hand, I think I am very close to becoming an insurance claim expert. I mean, it only took me around 3 hours to make all of my calls yesterday to have claims resubmitted, to complete fund reimbursement requests, and to fight with our insurance companies regarding who should pay and what they should pay. Why, after six years, there are still issues with all of our doctors and insurance providers, I will never understand. This isn't rocket science people...same appointments, similar procedures, same billing procedures...yet, something always goes wrong. Yesterday's main issue included a denied claim from a surgery last spring. Apparently, it takes approximately 18 months for someone in billing to realize that the bill was not paid in full by one company or another. And, apparently the most obvious method for getting payment is to send a bill to me so that I can call them (the department sending the bill) and ask them to resubmit the claim with all of our insurance information, which of course they already have on file. Resubmiting without sending me a bill first would probably be entirely too time consuming. Oh, the US medical system is so grand.

To top it off, apparently Pennsylvania has changed the Medicaid system. So, I received information in the mail expressing an urgency for us to pick a carrier for Colin's Medicaid. This required calling the long list of doctor's, according to the person on the line from Enrollment Services, and requesting a list of the plans that they accepted. (Although the letter clearly stated that my Enrollment Specialist could help in providing this information.) I started the calling and on speciaist 3 decided to call it quits after realizing that all 3 accepted different plans. Too many tears (thanks to PMS) to continue calling and carrying on rational conversation. So, I will be working on that today, along with the rest of our insurance issues. Anyone out there who knows how to avoid the touchtone prompts? Feel free to share your tips. I am at this point praying that we are able to find a plan that the "most important" specialists share, so that we don't have to worry about a long list of consults with new doctors over the next month. Pray for that too. We like our doctors.

On a happier note, we visited our neighbors for dinner yesterday and the kids had a blast. Matt is a year younger than Colin and Chloe is a year younger than Karen's twins, Jon and Will. They always play so well together and it was nice for all of us to have company for dinner. And, of course, a little adult conversation is nice as well.

Jon and Will.

Chloe Elaine.

Colin and Matt.

My Girls ~

A great weekend with my wonderful girls! Ten years since graduation and little has changed. I love it!!! So happy to spend time with the best of the best. All of my love to all of you!!