Post-op update (FINALLY!)

Yes, yes, yes I know it has only been like 2 months since surgery and I am just now getting around to doing a post-op update.  Sorry!

So Konnor had his palatal fistula repair on August 21.  Once they got him back to surgery they found that on top of the big fistula that was right in the center of his palate he also had a smaller fistula behind his front teeth.  Well no wonder the poor kiddo couldn't make certain sounds and still had food coming out of his nose.  Anywho, due to the 2 seperate fistulas and their locations the Dr. felt that in order to get the best repair he had to actually take the entire palate apart again and reconstruct the whole thing.  BOOOO!!!!  He said that Konnor's was the most extensive palate repair he had ever worked on.  The good news was that he thought this second repair went VERY well and had every confidence that it would heal beautifully.

I have said a hundred times, I LOVE our surgeon and I LOVE our hospital.  I have never had a bad experience there until this visit and it was just 2 specific nurses who still thinking about them makes me go grrrrrrrr!  The first thing we have done with every surgery is tell every person who walks in the room from the Dr.'s, Nurses, Anesthesia, etc...., we talk to everyone about the fact that Konnor does not like strangers and he most especially does not like it when strangers try to pick him up.  Besides the whole not liking strangers thing, we also practically beg to be in recovery immediately b/c we have worked so hard to establish our trust level with him.  Don't get me wrong Konnor is securely attached to us and we have no concerns in that area, however, waking up in pain without us present has the real possibility of triggering some unpleasant memories for him.  In the past this has not been an issue, but on this particular day we got a recovery room nurse who apparently thought she knew better.  Just typing this makes me want to say GRRRRR again.  They have always called us into recovery either when the Dr. was talking to us or within a couple minutes of him leaving.  This day it took them 30 minutes after he left before they called us back and when we got back there this nurse was holding him and he was hiccuping b/c he had been sobbing so hard.  Seriously the flames had to have been 10 feet high coming out of my head.  I know my son and I KNOW he does not do that hiccup/sob scenario unless he is in real distress.  He lunged for me immediately and grabbed me in a death grip that didn't let up for 4 days.  I asked the nurse "did he come out swinging?" and she said with a smirk "yes, but we were fine." Seriously I am grinding my teeth right now I am still so mad about this incident.  I didn't address this with her at the time, b/c my priority was Konnor and getting him settled, but I assure you that this has been addressed with the hospital.  We also kind of butted heads with our night nurse, but I think that was just a normal nurse thinking that we are overreacting parents and not realizing that A) Mama is a nurse and B) this was not our first rodeo, I can name half the staff on the 10th floor so cut the crap and understand that if I am telling you there is a problem then there is a problem.  Once she and I established a routine for pain meds/vitals and nausea medicine we all got along just fine.   I have been a nurse for 10 years and am in no way saying your nurses are being malicious or that you should argue with them at every turn.  What I am saying as both a nurse and Mama is that if your gut says something is not right then listen to it and push the issue.  End of rant.

Needless to say I have a thing or two I would like to discuss with our recovery room nurse if I should ever run into her on the street.  She just does not understand the trauma that she inflicted.  I am not exaggerating when I say this, it was at least 4-5 days before I could be more than a foot away from Konnor.  At least another week after that before I could get out of line of sight.  I will honestly say that this was by leaps and bounds our hardest surgery yet.  We really struggled the first few days home with getting food in him.  The day after coming home he started running a low grade fever, had ice cream leaking out of his nose (yes total freak out occurred b/c we thought this meant he had a new fistula already) and he was vomiting.  We finally figured out that Codeine is not his friend and once we stopped it he started eating a little better and stopped vomiting.  All of these things were manageable.  What we were really completely and totally unprepared for was his anger.  It started in the hospital and he literally would not let me put him down.  If Mark tried to even touch him kicking, scratching, hitting and pinching was the result.  It took 3 of us to hold him down each time he needed vitals or meds and the nurse took a foot to the jaw at least once. Thankfully Konnor has a Papa who loves him unconditionally and understood that he just needed an outlet for his anger and confusion.  Once we got home he warmed back up to Papa, but the generalized anger lasted for 2 very, very long weeks.  I don't blame him for his anger.  We have spent over a year telling him he would never be hungry again and here we are trying to fill up his little belly on liquids and soft foods.  NOT happening.  He was eating every hour trying to get full.  He was mad! and he made sure we knew it by scratching/throwing/hitting everything in sight.  We went for a 2 week follow up and got AWESOME news!  Dr. said the repair looks perfect!!  He also advanced him to a "anything that is not crispy or crunchy diet."  As soon as we started getting his little belly full our tantrums significantly decreased.  Dr. thinks that the occasional food coming out of his nose is from the alveolar clefts.  Basically there is still 1-2 little holes where they reattached his gum line and until he has his bone graft he may occasionally have food leak.  We see Dr. again 11/5 and he said that as long as everything still looks good we shouldn't need anymore surgery until between ages 8-11 when he would get his bone graft.  YAY, YIPPPEEE, HOORAY!!!!!

That brings us to 6 weeks post-op.  I had noticed he had a suture that hadn't dissolved so when we were in for a followup with the ENT I asked them to peek at it b/c I thought it was getting red.  Long, long story short......not only did he have a suture that didn't dissolve, but he had developed an abscess where the suture was located.  Thankfully our surgeon decided to try treating him with outpatient antibiotics first.  The antibiotics worked and once the swelling went down the suture fell out.  At this point all looks beautiful inside his perfect little mouth.  I know your eyes are probably starting to cross right about now so I will update you on what else has been happening the last few months in a later post.  Thank you to everyone who has continued to pray for our little man.

Where did the summer go???

Phew!  This summer has absolutely flown.  I thought it was time for a few more random updates.  In June Mark and I had our first ever trip away from Konnor.  We went to Jamaica with a bunch of friends  for 5 days.  Konnor did fine staying with his Nana at our house.  Mama was a wreck the first and last day, but did pretty good the rest of the time (Thank Goodness for Skype!!!).

Over the 4th of July weekend we took an impromptu trip to Chicago.  It was so much fun.  We went to a carnival, took Konnor's first train ride from Shaumburg into downtown and back (I will tell you why this is such a huge thing in a minute : ).  Konnor had his first ever IKEA experience.  In general, we swam, we played and just relaxed and spent some quality family time together.  It was a great weekend to recharge.

Thanks to Konnor's friend William he is officially a TRAINAHOLIC!!  Oh my goodness it is all trains all the time in our house.  I am glad he finally has something specific that he likes to play b/c for the longest time he would just flit from toy to toy without really caring about any of them for more than a minute.  Now he can play trains and cars (but mostly trains) for hours if we let him.  We have to take periodic "train breaks" and do puzzles, coloring, painting, etc.... or he would never leave his train table.

Mid July marked an important transition for Konnor.  Many of you know that we had a very bad experience with the standardized daycare he was attending.  Since Konnor does not do well with big changes we didn't want to move him until we were sure we had found just the right place for him.  Truthfully we were not having a whole lot of luck finding a place until one of Mark's coworkers mentioned a friend of theirs that was starting a new home daycare.  Long story short Konnor now attends a small home daycare with only 1-2 other children.  He LOVES Miss Karen's house.  They swim, swing, paint, play in the sandbox, do scavenger hunts, play on the IPAD, practice their colors and shapes and just in general have a fantastic time.   He has adapted beautifully.  We are just so blessed to have found someone who cares about him and encourages him in such positive ways.

Speaking of----here is my brag moment.  He is just so stinkin smart!  I know I am biased, but really he is a smart cookie if you can get him to stop moving long enough to show you.  He can now identify: stars, squares, triangles, circles, blue, red, orange, yellow (identify and do matching!)  I know there are a few more, but my brain is starting to getting muddy since it is seriously past my bedtime.

We have half-heartedly started potty training.  He is definitely ready but Mama was waiting until she really had time to devote to this particular thing.  Tonight we stopped at the store and bought his first ever big boy undies (I know that he is going to read this one day and roll his eyes while saying "AH MOM did you have to talk about my underwear on the internet!" but I am going to anyway : )  I will admit that this Mama got a little teary when she opened the package at home.  I just can't believe he is getting so big!  Anywhoo...we will officially be starting our potty training sometime next week so wish us luck.

Speech has been going really well.  We have phased out some of his signs and he is being much more vocal.  Unfortunately our speech therapist thinks that we are about as far as we are going to get without having his fistula repaired b/c the airflow thru his nose is preventing him from being able to make certain sounds.  That brings me to our next point.  Konnor is having his palate/fistula repair on Wed. I soooo hate the idea of our little man going thru yet another surgery, but we know that it is necessary so we are getting ready to buckle in for a rough couple weeks.  Any prayers would be greatly appreciated.  I will update after his surgery.  Thanks for stopping by!

Ashley

LOOK MAMA THERE'S A TRAIN!!!!

Rollercoasters in August

Late July yard fun

Fun at the Peoria Zoo early June

50/50 and beyond

Yesterday was a big deal in Konnor's life.  No we did not go or do anything out of the ordinary, but yesterday was a huge milestone just the same.  You see, yesterday was 50/50 day.  Yesterday was the day that marked Konnor having spent half his life in an orphanage and half his life with his Forever Family.  What's an even bigger deal though is that we are past 50/50 day.  As of today Konnor will have known the love of a family longer than he ever knew the life of an orphan.  That my friends is priceless beyond words.

There are an estimated 163 million orphans in the world.  Will you take the leap to make it one less by having room for one more?

Random updates.........

I just thought it was time to do some random updates going into summer:

-Konnor has gotten 2 canines in and is workong on a 3rd one, with only one more to go....Yay......Unfortunately this means that pretty soon we will be working on 2 yr molars : (

-In the last week he has started taking not only his little yellow stuffed ducky to bed, but now he is taking a blanket to bed with him also!!!!!!  This is HUGE people!!!!  He doesn't necessarily always want it on him, but sometimes he does and considering that a year ago he wouldn't have anything to do with anything soft this is a huge step.

-Our regular speech therapist Brittany is back from maternity leave, YIIIPPPEEE!!!  Konnor loves Miss Brittany and when he saw her he got all excited, took my hand and reach over to take her hand and then headed back to his speech room.  It was soooo sweet!  He did very well with his first session back with her.  He is in a phase where we can understand a few words he is trying to say, but most other people cannot.  Right now I can tell when he says the following: milk, mine (gotta love daycare), Yes, Nei Nei (this means "go Night Night") occasionally he will say Bax (his version of Baxter), he does a very good "H" sound for Help, Mama, I swear I heard a version of train the other day, he is starting to get an "N" and "P" sound but no real words with them yet.

-We have unofficially started potty training.  When he moved up to the 2yr old room at daycare I started offering the potty b/c he would be seeing other children at school using it.  He would go occasionally, but not with any real consistency, and let's be truthful here....Mama just wasn't ready to start potty training yet.  In the last 2 weeks though he will consistently go potty pretty much every time you ask and just in the last few days he has started going into the bathroom and putting his potty seat on the toilet then asking for help.  We went to the store yesterday and got some pullups and we are going to try to set aside a whole weekend here soon that we are staying home and really focusing on potty training.  : ( He is just growing up sooooo fast!

-Konnor's new favorite things are cars/trucks and trains.  Loves them and we have to read about them and play with them allllllll day.

Thanks for stopping by!!  Hope everyone is having a fantabulous summer!


Ashley

1 Year Forever Family Day!!!!

One year ago today Mark and I spent the morning organizing our hotel room in preparation for the little boy that would soon be coming back to the hotel with us.  You can read about Gotcha Days, bonding, grieving, orphanage behaviors and sleep issues until you are blue in the face, but nothing really prepares you for the jumble of nerves that sit in your stomach while you wait.  Truthfully the "Gotcha" part of the day went so quickly that it seems like a blur now, but I can clearly remember the rest of the day.  The snuggles, the first bath, the laughter and the joy of realizing that our dreams of parenthood had finally come true.  We have our good days and our hard days just like any family, but the good days definitely win out by a long shot.  Here are a few random updates for our 1 year Forever Family Day:

-Konnor has gained 9 lbs and 4 inches this year

-He is completely caught up developmentally with the exception of speech which is to be expected

-In the last few weeks he has started sleeping with a small yellow ducky and is actually playing with his other stuffed animals now.  This is huge for a little boy that just a year ago would not even touch a stuffed animal and hated blankets.

-In the last few weeks he has started doing alot of imaginative play.  He will make his animal crackers walk on the table (I was so excited I had to change the rule of "don't play with your food" to "you can only play with your food if it actually looks like the animal."  He will take his stuffed animals and make them "pretend" eat from his play dishes and he will make Mark and I a meal to pretend eat.

-The last 3 weeks he has been sleeping better (although we still have a ways to go), but I refuse to call it a good sleep pattern until we have been sleeping well for at least 6 weeks.  Sleep has been a big struggle for us the last year so I don't want to lull myself into a false sense of restfulness : )

Overall we are happier than we have ever been and so very grateful to have this special little boy in our lives.

1 year ago today

Fun at the park on Forever Family Day!!

Happy 2nd Birthday Konnor!!!!!

We now officially have a 2 year old in the house!!!!  It just doesn't seem possible that he is already 2 years old!  Unfortunately, Konnor has been battling Bronchitis all week so we were not able to do our planned birthday celebrations, but I think we still managed to make it a fun day.  Thankfully he seems to be on an upswing and has been pretty active today.  His appetite also seems to be returning which is a good sign as well.  So we played and snuggled and played some more.   Then we had dinner here at the house with Grandma and Nana (Papa is out of town for training and Grandpa had to work).

Here are some of Konnor's favorites as a new 2 yr old:
Foods:  pizza, sausage, cheese, oranges, carrots, vanilla yogurt, applesauce, cheese crackers, oatmeal

Activities: climbing, dancing, any water play, climbing, playing chase around the house, anything outside, did I mention climbing?, Mr. Potato Head, his Little People Safari Animal Zoo, reading and doing stickers

Music:  He loves pretty much any music

TV (although unless he is sick he doesn't get much TV) --He likes Bubble Guppies, LOVES Mickey Mouse Clubhouse and just in the last week or so has become interested in Jake and the Neverland Pirates

Our Big 2 year old!!!

A Heavy Heart...

As I write this post it is already April 18th in China.  The sun is coming up and millions of people are beginning their days.  But on this, the eve of my Son's 2nd birthday, their is one family halfway across the world who will mourn this day.  A family who spent 9 months sheltering an unborn child.  They anticipated what it would be like to be a Mother, Father and Grandparent.  A family who felt happiness with each step of the pregnancy and tried to imagine what this unborn child would look like, sound like and grow up to be like.  I imagine that they gathered clothes and other baby essentials in preparation for this little ones arrival.  Then it happened.....April 18, 2011 they gave birth to a beautiful little boy.  A little boy with big brown eyes and chubby cheeks.  Instead of the joy they had anticipated his birth brought heartache as they realized they would not be able to provide the medical care this little one would need.

The details of how/when Konnor came to live at the orphanage are his to share, but I can tell you this one thing with absolute certainty....Konnor's birth family loved him.  I do not have a single doubt in my mind of this.  They risked a great deal to leave him in a place that would assure he was found immediately.  That is an act of Love!  Many children are not so lucky (all over the world) as to be left in a place that would give them them the greatest opportunity for survival.  I cannot even begin to imagine how they felt that day as they looked into this child's eyes knowing they would never see him again.  Hoping that a family would come for him and that he would have the life that they could not provide.  My heart aches for this family on a daily basis.  I think of them when he looks at me with those beautiful brown eyes or when he laughs so hard for so long that it turns into hiccups.  I do not know their names or faces, but we will forever be tied to each other through the love we share for this one amazing little boy.  So today I will say extra prayers for this family.  Prayers that they are at peace with the decision they made, and that somehow, someway they will know that their precious little boy is healthy and very, very loved.

An almost 2 yr old : )

Sheeesh!  I can't believe it, but next week we will officially have a 2 year old in the house.  It is crazy to think that Konnor has already been with us for 11 months.  We waited so long for this amazing little boy and now time is just flying by.  I keep telling him to stop growing so fast so Mama has a chance to get used to the idea of him as a big boy.  He is working on another (hopefully his last one for awhile) molar : ( and I think maybe a canine as well.   On an AWESOME note....we had our 1 month postop f/u from getting his 2nd set of tubes yesterday and ....drumroll please.....his ears are completely clear, WhooHoo!!!!  Praying they stay that way for awhile b/c he really needs a break from all the antibiotics.

The last few weeks Konnor has really gotten into animals.  There is an animal sounds song on youtube that we watch every day.  We decorated the downstairs bathroom in jungle theme (thanks to his Grandma's Easter present) and he constantly goes up and points to the different animals to be identified.   He can identify elephant, zebra, giraffe, cat, dog, cow, sheep, duck, monkey, frog, lion, bear and I am sure a few more that I just can't think of right now.  We still don't have any words, but his comprehension is thru the roof the last few weeks.  He is following simple commands very well and is turning out to be a very good helper when unloading the dishwasher or unpacking grocery bags.

Here is a preview of his 2 yr pictures we had done,......be prepared for cuteness overload : )

This picture is my favorite b/c it is just totally his personality!

Random Updates

Ok, so now that I have the Christmas update finally posted I can fill everyone in on all the randomness that has occurred in the 2 months.  On December 24 Konnor started daycare.  I know people thought it was crazy to start him on Christmas eve, but it actually worked out really well.  I had to work a half day that day and Mark was off so I dropped Konnor off around 720.  This was a good day to start, b/c there was only one other child in his room which means he received alot of attention and just got to play hard for a couple hours.  Mark picked him up after about 3 hours and truthfully everything has been going well since then.  I cried like a hormonal teenage girl that first morning dropping him off, but now that I see how much fun he has I have gotten better.  He no longer cries when I leave, but still gives me a really pathetic sad face.  Mark said he is always happy to be going home so that made me feel better.  I do really like the teacher's in his room.  They have really gone above and beyond to learn about him and they don't mind that I am a little over protective still.

January 14 he had his first daycare injury.  Apparently he tripped and fell face first on a toy.  Of course I don't want my son to be injured in any way, but seriously!!!!!  You can't hurt a different part of your body besides the one it took them 5 1/2 hours of surgery to put together!!!!  I swear between his face planting on day 4 after his lip repair and face planting again at daycare he is just trying to undo all that wonderful work.  (yes I know he is allllll boy and I am just going to have to come to terms with bumps, bruises and scars, but I am still adjusting so just let me fuss : )  It looks like his bottom teeth just came up and took the whole top layer of skin off his scar.  Booooo!!!!  Nothing can really be done about it so we just put some Neosporin and Aquaphor on the area and restarted  scar massage once it healed.  Here is the comment from the daycare teacher, "He is really a little dare devil.  Everytime I turn around he is climbing on the table or chair and I am racing across the room to try to catch him. Then he will just jump into your arms and assume you are going to catch him."  Welcome to my world young lady!  Konnor is definitely going to give me gray hair at a much earlier age than I would like.  He truly has no fear.  He climbs on EVERYTHING and he is always in such a hurry to get where he is going that he spends half the day tripping over his own feet.  On a good note, he is really good at catching himself when he falls : )

About 7-8 weeks ago Konnor got his first molar (let me tell you how NOT fun that was).  In the weeks since he has also gotten 1 more molar, two lower incisors and an upper incisor. At one point he had 4 teeth coming in at one time. This is actually great news, b/c sometimes cleft children are missing their upper incisors and canines.  So right now we have 9 teeth and I think maybe a lower molar is starting to come thru as well.   Unfortunately, it takes anywhere from 2-4 weeks for teeth to fully come in for him.  We are working on getting him into a dentist soon.  Children with cleft palate are sometimes missing teeth (as discussed above) or their teeth can grow in unusual places, so we just want to stay on top of his oral health.

Konnor started speech therapy at the beginning of December.  We are finding that our Son is somewhat stubborn.   He started out making alot of progress with just general vocalizations, but then he started getting stubborn and refused to use his signs.  We only taught him some basic signs (eat, milk, all done, please, up and more), but we found that he was just starting to point and use the "more" sign for everything.  We have added in the sign for "help" this week and that has gone over really well.  He is at an age where he wants to communicate, but is getting easily frustrated when he can't make us understand what he wants.  Unfortunately when he gets frustrated he starts throwing things or trying to hit Baxter.  "Help" has gone a long way to alleviating some of his frustration.  Konnor loves visiting with Miss Brittany (our speech therapist).  I talked to her to see how she thought he was doing and she said that he is really doing pretty good.  She said that boys tend to talk later than girls and it is pretty common for them to not start talking alot until age 2.  She said that if Konnor hadn't had a cleft she probably would not have started seeing him until age 2, but due to his cleft she wanted to start teaching him how to use those muscles early.  He has started making more vocalizations.  He says "Mama," "Yay,""Uhh" for up, "Ba" and he makes the "Mmmm" sound alot.  We are working on teaching him to pair a vowel with the "M" sound.  He babbles ALOT, but they are not really specific sounds at this point.  We will just keep plugging away.  The good news is that in the last few weeks his comprehension of what we are saying has gone thru the roof.

We have also started trying to foster some independence in Konnor so that he is not permanently attached to Mama's hip all the time.  Don't get me wrong I LOVE snuggling with my little man, but I think that since he is not talking we sometimes still treat him a little to much like a baby instead of the almost 2 yr old that he is.  He is getting very good at "helping" Mama with chores.  He will throw things away for me (although he gets a little over eager with this and sometimes we lose a toy to the trash can : ), he will hand me some of the dishes in the dishwasher to put away and he is getting very good at helping to pick up his own toys.  He also likes to mimic alot and has his own miniature set of vacuum, swifter, broom and mop that he will follow behind me with and mimic whatever I am doing with the appropriate miniature version.  Part of me wants him to stay a baby MUCH longer, but I am also so proud to see how far he has come in such a short time.

Ok so for the final update let's do some stats.....Konnor is now up 9 lbs and 4 inches since coming home!!!!!   Bad news is that the entire month of January he had an ear infection that he just couldn't kick.  It is clear now, but one of his ear tubes was pushed out by drainage and the other is barely hanging on. Sooooo, on Tuesday we are getting new ear tubes placed.   I hate that he has yet another procedure scheduled, but our little man truly cannot go without ear tubes.  

February 9th we celebrated our first Chinese New Year as a family.  We attended a dinner and they had all sorts of demonstrations and activities.  Konnor was not so excited about it (as you will see in the picture), but hopefully over the next few years he will start to enjoy it more.

Ok so sorry if your eyes are crossed from reading my mile long post : )  We had to get a new computer and it has taken me forever to learn how to use the blasted thing (me+technology=not good).  Thank you for your patience and for continuing to check in with us.  I promise to get more in tune with this contraption and get posts up more often.

Ashley

Nana, Papa, Mama, Konnor, Grandma and Grandpa all celebrating the new Year of the Snake

Don't you want to just laugh right along with him?

Seriously this is the only snow we have gotten so by golly he was getting in his snowsuit and playing in it!!

Merry Christmas!!

Written December 25, 2012 (it just took me this long to upload photos--sorry : )

I just spent the day watching my Son open presents and play like a maniac.  He snuggled with Papa on the couch and showed off big time for his Grandparents.  A year ago we were still in shock that we would soon be parents.  Two, three or even four years ago a day like this was still a dream we held close to our hearts, but didn't really know if it would come true.  Well today it came true.  I sit here reflecting on how very blessed I am.  I have a husband who loves me like crazy despite all my bad habits and caffeine addiction.  I have a beautiful Son whose face lights up whenever he sees me.  Wonderful friends and family who have been so incredibly supportive.  A comfortable home--albeit a little messy at times.  A rewarding job that provides security for my family and allows me to continue learning new things everyday.  I look around me and it is so easy to see the blessings in my life.