PARENT/TEACHER CONFERENCES......

This past week was the wonderful Parent/Teacher Conferences.  I love conferences.  I love seeing how the kids are progressing, where their strengths are and what they need to work on.  We started Wednesday morning with Coop's.  His teacher is amazing and she spoke so fondly of Cooper.  I love that people see his humor and spirit.  He is doing fantastic and besides have a little friendly competition with his best buddy over a girl, the report was great.  Yes, Coop and his Buddy got in trouble because they were fighting over who was going to protect this certain girl.  If you think that is funny.....the teachers sat Coop and his buddy on a bench after the little episode and told them they had to set there and work things out before they got up.  Later when I inquired about the situation to Cooper he said, "yea we had to sit and talk about it."  "How did that go?" I asked him.  "It was booooring!" Coop said so annoyed by the whole thing.  I couldn't help but grin and give him a hug to which it said, "Stop that Mom!"  I love my little boy!

We did get some very interesting information regarding Coop though.  It seems that Coop cannot comprehend things visually like he can verbally.  As a matter of fact, he gets very frustrated and knows he should know things but just can't quite put it together.  For example, Coop knows his letters and is able to write them but when shown a chart of his letters that was all mixed up and asked to point at a A he could not do it.  He apparently got very frustrated as if he knew he did know it but just couldn't get it to click.  It is too early to tell yet, but we have to ask if we have finally found something that is a result of the brain damage he incurred during his time on ECMO after his 2nd surgery.  If it is, I am just glad we have discovered it early so we can help him learn how to adapt to this.  We plan to work on a few things and see what happens.  He is so smart I know that even if it is a struggle he will learn to adapt and we will be right there helping him.

Thursday was Raelynn's day to shine.  Raelynn has a wonderfully amazing teacher as well and again we got a wonderful report from her.  Raelynn is doing well and really excels in the reading and writing areas which is no surprise considering she spends hours reading and writing in journals.  She loves research papers and is truly loving learning.  She does well in math as well although shows no interest :)  I was so proud of both of them.  They are wonderful kids and I hope I continue to always look forward to conferences.

Other than that last week was just plain busy.  We had so much going on.  Wednesday Aunt Steph was to come and take Raelynn to the Book Fair as Raelynn had invited her.  Unfortunately she couldn't make it because of a work related issue.  When I picked Raelynn up from school she came running with a paper made bouquet of flowers and said, "I made these for Aunt Steph for taking me to the book fair!"  I guess it must have been my face but she knew right away something was wrong.  I explained that Steph couldn't make it and why.  Raelynn tried so hard not to cry but she was so disappointed and there was no one she could hold the tears back.  Luckily, Aunt Steph made up for it all by surprising her the following day with flowers, chocolates, a trip to the book fair and then Orange Leaf.  Needless to say, Raelynn forgave her for the day before.

Valentine's Day was wonderful as always.  The kids started the day with heart shaped doughnuts.  I had packed them special Valentine's Cards in their lunches and then had special Red Velvet Pancakes for dinner.  I was spoiled with beautiful flowers and my favorite candy, licorice.  It was a great day and is always fun with kids around.

Friday night Coop and I went to a birthday party at the Indoor Aquatics Center.  It was fun to watch him interact with his friends.  He is truly adorable and so many people said to me how their son or daughter talks so much about Cooper and how much they like him.  It was a fun but long evening.

The rest of the weekend flew by as always.  Raelynn said tonight as I put her to bed, "I really wish the week was Saturday and Sunday and the weekend was all the other days."  I love her wish!

COOPER UPDATE...........

Well Mr. Cooper has kept us busy the last couple weeks with worries about bleeding then his weight but on Friday we forgot about it all and celebrated.  We had his follow up appointment with cardiology from his December surgery.  The report was amazing.  Coop is doing fantastic and the surgery was very successful.  Coop is right on the leading edge of some amazing technology.  What they are doing for him now through cardiac catheters was not even possible 2 short years ago.  In fact, Coop has been the guinea pig for some new procedures.  Anyway, on Friday, his cardiologist said there is a chance, no promises but a chance, that Cooper will never have another open heart surgery.  There is a chance that they will be able to do what Coop needs from year to year with a surgical cardiac catheter like they did in December.  Now I know there is no guarantee but to even have a chance that he may never have to endure another open heart surgery is enough to get us pretty excited.  Of course no ones knows for sure  about anything when it comes to Coop but regardless I am so amazed at the advancements that have been made.  

Coop has also been trying to eat more, he is trying so hard.  The boy cannot gain weight and in fact had lost since his December well check.  He does not have any to lose so everyone gets pretty worked up.  We go back in on Thursday for a weight check and we'll see how it looks.  He has been drinking 3 Ensure a day and eating meals so you would think he would have gained some anyway.  

This past weekend we selected the next recipients of funding for CCF.  The families have not been notified yet so I can't spill the beans but I am so excited.  The foundation is amazing and our BOD are wonderful people.  We have recently added another board member and brought on a part time helper to get even more done.  I struggled with having help because I feel like a may have failed a little in keeping up with everything but after having her work for just the past 5 days I can tell you this was a wonderful decision.  We are going to grow, raise more awareness for CHD and provide funding to even more families!!!  Who could ask for anything more!!!

This past weekend Raelynn learned to do laundry, lots of laundry.  Raelynn decided to make a very sarcastic comment about whether I was going to do laundry this weekend or not so I thought it was about time she learn to help out.  She did ALL the laundry from start to finish including folding and putting it away.  Considering she has mentioned at least 3X since then that she will not make that mistake again.

While Raelynn was working, Coop was practicing his silly faces so that the next time I am scolding him he can flash me one in hopes that I will crack up and not be able to continue my scolding......

and unfortunately I must report, it worked!

Today was Raelynn's Valentine's Day Parties at school.  I had signed up to provide snack and for the first time ever I they turned out great.  I got to attend the party for a bit as well over my lunch hour.  I love how much she loves having me there, it makes it so wonderful.  It is also fun because the kids all know me from reading in the mornings and therefore I get lots of attention.  Who wouldn't love that!!??

The rest of the week is just as exciting as the first has been so stay tuned.............

BGC OF LAWRENCE YOUTH OF THE YEAR.....

5 o'clock rolled around today and ruined my day.  I made a mistake at work and discovered it right at 5 o'clock.  It wasn't a huge mistake but a careless and senseless one.  I was frustrated with myself, now running late, tired, hungry and my evening was just beginning.  I had told Raelynn I would take her to the Boys and Girls Club of Lawrence Youth of the Year event tonight where the select the Lawrence Youth of the Year that will go on to compete for National Youth of the Year.  The truth is, at this point, it was the last thing I wanted to do.  In fact, after I picked Raelynn up, I carefully tried to convince her she would probably be bored in hopes that she would decide not to go.  She wavered a little and then decided if she didn't go she would never know what it was like and if it ended up being boring she would know not to go again.  Soooo we rushed home, rushed dinner, freshened up and rushed back out the door just as we have all week.  As I drove into the parking lot of the Lied Center and passed the Dole Institute I knew it was a good thing Raelynn made me come.  It is beautiful up there and impossible to stay grouchy.  We got out of the car and I thanked Raelynn for making me come.  :)  We entered the Lied Center where Raelynn was greeted with hugs from some of her staff and I was greeted with smiles from many people I knew in the community.  We found our way to our seats and never stopped smiling, chatting or crying after that.  The BGC of Lawrence has been very important to our family because they provide so many wonderful programs and give Raelynn, and Cooper next year, a safe place to be after school and during the summer.  I have been amazed by the program and what it does.  This year I even joined their efforts by being on the Parent Giving Team, a new group within the organization that focuses on raising additional money for the program.  But even with this involvement and love for the program, I had no idea how awesome tonight would be.  The evening MC was Kim Murphree who makes everything grand!  It started off with the singing of the National Anthem and then we heard from the candidates, Trei Dudley (National Youth of the Year), Charlie Weis (KU Football Coach) and Colby Wilson (Lawrence BGC Director).  There were also dance performances by 2 or the local clubs which Raelynn loved.  Seriously it was a wonderful program and motivational evening.   I will tell you right now we will be annual attendees from now on.  The highlights of the evening for me was when Raelynn pulled the donation envelope out of the program and asked what it was.  I told her it was a donation envelope and she instantly asked if she could donate $20 of her "Giving" money. I told her I thought that was a fantastic idea.  She completed the entire donation envelope herself and was so happy to do it.  The other awing moment to me was when I listened to Charlie Weis tell the youth that the most important thing in their lives was to be a "good kid".  We constantly stress to the kids that we don't care if they are the smartest, the fastest, the funniest, the prettiest, the cutest, the most creative.......all we want them to be is kind, honest and compassionate and if they are that they will always find success and happiness.  And wouldn't you know it, but in a nutshell Charlie Weis said the same thing tonight.  At one point Raelynn looked up at me and said, "Is this where you got that being kind thing from?"  To which I responded of course, "No, he got it from me!"  It took her a minute to think about it and then just smiled.  The whole evening was amazing and Ajala Anavberokhai was named the 2013 Youth of the Year who we congratulate,  but in my mind there were soooooo many winners in that room!  A wonderfully surprising evening that is just what I needed!

A Hopeful Heart-A must read!!!

A Hopeful Heart

FRUSTRATED.........

Well today I think I may have gotten a little frustrated to say the least.  First let me start by saying we are spoiled horribly when it comes to our doctors.  We love them and we always receive wonderful prompt attention.  In addition we have a wonderful nurse at our pediatricians office that ALWAYS provides us with answers.  I usually text this particular nurse to call me when I have issues with Coop or if it is an emergency I contact our doctor directly.  This morning however I did not feel there was any emergency to the questions I had so I decided to go through "normal" channels and just call to talk to our pediatricians phone nurse.  When I called and left a message for her, I was asked what the call was regarding and I let them know the whole situation about Coop bleeding for over 10 hours from a tiny blood blister this past weekend.  When the nurse called she had no idea why I was calling and didn't even know Coop was a cardiac kid.  Maybe it was my fault that I assumed they would at least scan his file before calling or while on the phone.  Anyway, as soon as I mentioned he his last surgery and she figured out he was a cardiac kid and was on 1/2 an aspirin she said I should call the cardiologist.  I did not disagree with this and was not at all bothered about her recommending us to call them.  I always start with our pediatrician but understand if a situation is referred to our cardiologist.  So I called the cardiologist nurse and guess what?  She would not even acknowledge the length of time he bled and just said we should have the spot checked out by our pediatrician and this wasn't a cardiac issue.  She literally said to me, "Well as a Mom I would want to know what this spot is that was bleeding."  I calmly said, "As a Mom I would just like to know if my son is bleeding to death from a paper cut what my options are!"  I think she caught on to my sarcasm but again referred me back to my pediatrician.  I was so frustrated by this time and knew that my normal calm self was being replaced with a psycho angry Mom that I chose to make no further calls.  What is most frustrating is that at either office I have no idea if my actual doctor even knew I called.  I also still am a little uneasy should Coop have any real cut or bloody nose or bumped lip and the bleeding won't stop, what do I do then.  I guess being a prepared parent is not that important nor is the fact that our son's blood took over 10 hours to clot!  Ok, so yes, I am a little frustrated at this point but tomorrow is a new day and maybe I will be ready to try addressing the issue again in my nice calm voice and not my psycho angry voice.  Wish me luck!