Saturday, November 24, 2012

First Word!!!!!

So we don't start speech therapy until December 7, but when we originally met with the cleft team in June they said that M's and N's would come first with B's and P's being the hardest for him to master.  So with that in mind we have been working very hard on M's and N's in our house.  The easiest are Mama and Monkey b/c he sees them everyday (he has monkey's on the walls in his room).  He has been trying so hard the last week to get some words out, but could never really get them.  A couple times it sounded like he was trying to say Mama, but never in relationship to me as it seemed to just be more of a babbling Mama.  Well today I was holding him and standing next to Mark talking and he very clearly came out with Ma.....long pause....Ma and then leaned in for a kiss on the cheek.  Oh be still my heart that was the most beautiful thing I have ever heard.  Yes I got all teary and hugged and smooched him until he wiggled out of my arms to go play!  We just love this little guy soooo much.

Ashley otherwise known as Ma......Ma

Tuesday, November 20, 2012

3 weeks Post Op

So tomorrow will be 3 weeks since Konnor's lip repair.  He is AMAZING!!!!  We saw the surgeon last week and no major ill effects from our little fall on day 4 post op.  He appears to be healing beautifully and seriously you can barely even tell he had a cleft at all--ever.  We will see the surgeon again in a couple weeks, but so far all looks good.  The only bad thing is that we definitely have a hole in his palate : (  Boooooo!!!!!  There is no way of knowing if the area in question finally just gave out under the strain of another surgery or if his fall weakened an area, but we definitely have food/drink coming out of his nose now.  The reality is that this was always a possibility b/c his palate repair was so extensive.  It is not bothering him at all or impeding his eating so for now we are just going to watch and wait.  The surgeon said that sometimes they repair themselves, but if it hasn't healed in a year then he would think about another surgery to close the area.

We had our 18 month Well Child Check (yes a month late, but they wanted to wait until after surgery) today.  Holy Cow this little boy, who I can't say is all that little anymore, has gained 6 lbs and 3 1/2 inches in the 6 months and 6 days he has been with us.  That is after 2 major oral/facial surgeries that had him on soft diets for 7 weeks!  He is now officially in double digits on the growth chart: ht/wt 11%/16%.  Not to shabby considering at the end of May he was ht/wt 2%/1%.  He is just getting so big.     It makes me sad that he is growing so fast, but oh so proud at the same time.  In respects to everything else he is doing really well developmentally.  He is starting speech therapy in 2 weeks, but you can tell that he is already starting to try to say words.  Can't wait till we hear Mama and Papa for the first time!

The last 2 weekends have been wonderful.  Just Mark, Konnor and I having quiet family time.  We went to the local zoo one day.  It is a really small zoo, but Konnor loved the monkeys.  We now have a piano for Mr. Konnor man.  I know he is only 19 months, but the deal was to good to pass up so for now we just sit at it and he gently touches the keys.  We plan on starting piano lessons when he is about 3, but until then I am going to get a beginner piano book and try to teach myself a few simple songs.  Now that surgeries are done for awhile we are trying to settle back into a normal daily life routine.  We are very excited about getting to celebrate the upcoming holidays with our little monkey man.  We are so thankful everyday for the blessing of being his parents.

Happy early Thanksgiving everyone!!!!

The Hendricks Family

Push ups

Mama I said no more pictures!

fully belly coma

Friday, November 9, 2012

Surgery update

So Wednesday October 31 was the big day.  We headed down to St. Louis the night before and checked into a hotel.  Konnor decided that he wanted to stay up till 11 which actually worked out well b/c then he slept until we woke him up and loaded him in the car to head to the hospital.  As it was Halloween we thought it was only appropriate that he should be wearing his super adorable monkey costume.  The pre-op Nurse had said that Konnor could bring 1 comfort item that he could take back to surgery with him.  The problem is that Konnor still doesn't grasp the concept of "mine," so there isn't really 1 item that he can't live without.  Therefore we let him take his favorite toy..........one of Mama's spatula's.  He carries this thing around everywhere and don't even try giving him a different one, because it has to be a specific spatula or he screams and points until you give him the right one.  So there we are at 7 am walking into the children's hospital with our little monkey man who has a death grip on his spatula.  He was soooooo stinkin cute and the Nurses all loved him.  Our pre-op Nurse had him do a little parade to show all the other Nurses how cute he was.

They took Konnor back to surgery around 830.  Thankfully they gave Konnor some medication that made him very loopy so he went from pointing and waving bye bye at everyone that walked in to clapping when our Surgeon walked in and giving high fives.  They let us walk him back to the entrance of the OR and then the OR Nurse took him.    Watching the whole team walk around the corner with our baby was awful.  I had complete faith in them, but the fact is that that was MY BABY they were taking away.  I lasted until we started back out into the waiting room before my flood of tears started.    So thankful to my loving husband Mark for the unlimited hugs I needed that day.  I was a total mess, but he took great care of me.

The next 6 hours were some of the longest of our lives.  Our OR Nurse was great and would call us every hour like clockwork.  Konnor did beautifully throughout the entire procedure.  At 230 the surgeon came out to let us know that everything went great and he was very happy with the results.  We then went immediately back to recovery where we could hear our little man's angry cries as soon as we walked thru the door.  It took a few minutes, but we got him calmed down and soon headed up to our room.  Our Nurses were wonderful and we quickly got him scheduled with his pain meds every 4 hrs and started on some apple juice.  He really just wanted to sit on our laps and snuggle that first day.  He couldn't sleep (I think partially b/c they gave him a bunch of steroids in surgery to help with the swelling) so we sat and snuggled, sipped apple juice and watched a thousand episodes of Bubble Guppies. When he finally slept it was only for a couple hours and then he was up around 245 am.  Soooo, at 3 am we got him to take some ice cream (yeah, I told him not to get used to that at 3 in the morning : ) and a little more juice.  Konnor then proceeded to go on strike and refused to eat or drink anything, and I do mean we tried everything we had, for the next 7 hours.  Eventually little man leaned back in such a way that we were able to get a good look in his mouth and lo and behold I found out why he wouldn't eat.....he had a horrible Thrush from all the antibiotics.  This happened after the last surgery too and thankfully our Dr. knows this Mama knows what she is talking about and just ordered the medication without having to pry his mouth apart to look himself.  Of course the meds take a few days to work, but eventually we were able to get Konnor to take a little bit more to eat (they had Dairy Queen soft serve in the cafeteria that he inhaled : ) and they discharged us at around 630pm on Thursday.  Yay, so glad to be home!!!!!

The next 2 days he just got better and better.  We only used the restraints the first 2 nights and only for a couple hours.  He really did not have any desire to mess with his mouth and since he can get out of the restraints in about 15 seconds flat we decided not to fight that battle.  He was eating well and needing very little pain meds.  By day 4 he was pretty much back to normal, and then it happened..............Konnor face planted on our kitchen tile Sunday night.  Let me just tell you that this Mama was hysterical.  I wouldn't normally use that word in the same sentence as my own name, but seeing blood come out of my Son's newly constructed nose and mouth was more than I could take.  Thankfully Children's has wonderful on call Dr.'s that called me back personally (twice--yes I called twice) and it was decided that there really wasn't anything to be done that night so to just wait until our Surgeon's office opened the next day and see what they wanted to do.  We did lose at least 2 sutures, but thankfully those were already pretty superficial so no damage was done.  I talked to our surgeon's office at great length Monday morning and it was decided that since we could not see anyplace that the incision had actually busted open and he was eating/drinking fine then there was nothing to be done.  Other than his upper lip got a little more swollen you can't tell that he ever fell.  Let me just say a huge Thank You to my level headed Husband.  He was most definitely the calm one when this happened.  It is a very good thing that I do not react this way when I have a patient in distress or I would be looking for a new career.

So today is post-op day 9 and Konnor is back to his old self.  He is sleeping really good, eating well and we are getting some genuine smiles (albeit not full smiles b/c he still has sutures).  You can really see him starting to use his upper lip now which is great!  We see the surgeon next Tuesday and hopefully we will get the all clear for awhile.  Thank you again for all the thoughts and prayers over the last week.  Here are some pictures from our latest adventures.  I didn't think it was possible, but he just gets cuter and cuter : )

Ashley

5 days post op cooking Mama breakfast

His favorite new place to play

Our Beautiful---sorry I mean Handsome Boy 9 days post op

SERIOUSLY CAN HE GET CUTER?!?!

Giving Mama smiles as best he can since he still has sutures