Wednesday, November 28, 2012

2 centimeters and K's........

Monday we went for Cohen's endocrinology check-up.  We hadn't seen Dr. Moll in 6 months so we were anxious to see her stats.  Bear and I discussed a few months ago that we wanted to take a hiatus from her Growth Hormone shots.  We really didn't discuss this with the dr, we just felt like she had been on them for 2 years and yes, she has grown, but maybe she would have grown that without them, maybe not.  Well the results were she grew 2 cm.  She is now 35.75" tall and weighed 34lbs.  She is still not on the growth chart for height and 40th percentile for height.  Growing 2 cm is a big feat for her, but it took 6 months.  There is no set amount that she should grow, she just needs to continue on "her" growth curve.  The bad news is that we fell on her curve.  Her growth did not keep her on the curve she had been maintaining while on the shots :(  So we will be getting back on the shots as soon as our insurance gets the details worked out.  We are still waiting for her bone Xray results to come back.  In the past, her bones have been anywhere from 12-16months behind in age.  This is usually the deciding factor for us.  We don't care if she is little, small, petite, or whatever you want to call it, but we do want her to be age appropriate and be able to do what other 4 year olds can do.  I also discussed my concerns about her physique being still "baby-like" and he agreed that she did not have a mature body yet but her slow muscles are contributing to majority of her stomach area.  
Decisions like this are so hard for me.  It would make me so happy to know one day we did not have to plan meals around medicine and ensure when we go on road trips that we have a cooler to keep shots at the right temperature.  And now that she has a voice, it will tear at me when she screams that she doesn't want her shot (however she did FABULOUS at the lab Monday--not a single tear even when they didn't get it on the first stick!!).  But it is days like today that make everything worth it.............
Sweet baby girl was EXHAUSTED today!!  And the reason why is so exciting for us.  She got a new sound today for her book.  It is a BIG DEAL when we get a new sound.  She got her 21st sound today and it is "k" (c-uh) sound.  You might be thinking, that's not too hard.  Well you are WRONG :)  "K" is a sound made from the back of you throat--specifically, the velam-- which takes a lot of coordination.  Her and Ms. Taneil had been working on this for the last 6 weeks and today she mastered it without any stimuli.  YAY!!!   So, so proud of her!!  Her new goal is to be able to articulate her name correctly.  She is so determined!  There is no doubt that she will master that too!!

Saturday, November 17, 2012

We are back from the most Magical place on Earth!!

Sorry for long time, no blog!  But we have spent the last 7 days traveling to and from and enjoying Disneyworld!!  I have tons more pictures to upload and will post about our trip more thoroughly but this is just a quick stop in to say we are back :)

This was such a wonderful surprise.  My Aunt and cousin from Virginia were in Disneyworld to enjoy Epcot's Wine and Food Festival and run the Half-marathon.  We got to meet up with them for a quick visit before their carb up late lunch--- the race started at 10:00pm!!

Tuesday, November 6, 2012

Go Saints....wait.....we are the Eagles!!

So sad that soccer season has ended :(  This was truly a special group of boys and our favorite girl.  They each had such fun personalities and how Coach Steve was able to control them, is beyond me.  He was so good with the kids.  He let them have tons of fun but the kids also knew he meant business when it came to sportsmanship and listening. 
We had our end of the season party at Mazzio's.  The kids had the best time seeing each other off the fields.  To say they were WILD was an under statement.  I am sure they appreciated our business but they were glad to see us go!
Here are a few meager attempts at team pictures!  First we tried sitting down......
 This was by far my favorite picture.  This just captures how rambunctious they really are.
 This was better--they really do like each other!
 Just having fun!!
 Sweet friend, Barron getting his medal
 Kinson proud to wear his medal!
 Let's try team pictures standing......
This didn't work out either!!

If you are curious about the balloons, Smiley the clown, was our entertainment for the night!  Doesn't every soccer party have a clown!?!  The kids were mesmerized by him and they were so excited to choose their balloons.

Each child received a medal for participation. The medals were very nice!  Much nicer than we got in the past!    
We had a great, fun season and can't wait until the Spring!  Goooo Saints........wait.....we are the EAGLES!!!

Thursday, November 1, 2012

Power of Prayer

I always knew that prayer can be a powerful thing.  I have witnessed many answered prayers and many of my prayers have been answered in the past.  But this might be the first time I actually felt the power of prayer at such a grand level.  I have been overwhelmed at the people who have been praying for me.  And that is probably the one thing that kept me getting out of bed the last 3 weeks.  I prayed over and over to God to just give me the strength to go through this journey and let me not stray.  I was afraid that I might get to the point where I would lose faith and begin making deals with anybody that would listen.  But several of my prayer warriors told me that they had been praying that the cancer would be gone and several even told me that they prayed that the cancer would be given to them instead.  In the back of mind, I kept thinking that wasn't doing us any good, we know I've got it so let's move forward and go from there.  That is where I have been proven WRONG!!
Tuesday we went to see my drs.  First stop was the surgeon to check out my incision, which by the way looks great.  Well he kind of spilled the beans.  He walked in and looked at me and said "You don't have it and by the way your bone marrow is negative for lymphoma.  Don't tell Dr. Elkins that I told you!"  I knew I had just heard him wrong and said, "I don't have lymphoma?"  We did not know that this could be an option.  He went on to explain that there is a 5% chance that the Fine Needle Aspiration could be wrong.  My head kept saying, he is just a surgeon and he has no idea what he is talking about.  When we left, I looked at Bear and my Mom and told them to not say anything, I was not ready to go "there" yet.  There was not going to be any walls coming down yet.
   For the next 2 hours, we waited for Dr Elkins.  We were in a room waiting and could here hear on the phone just talking and then move on to the next call.  We were so frustrated!  Finally when she came in she explained that she needed to hear some things directly from the pathologists mouth.  She went on to tell us that they had sent my thyroid biopsy to Mayo Clinic where it showed that I had atypical lymphoid cells.  These cells are abnormal and can be precancerous or they could have just stayed in that state indefinitely.  She called the first pathologist and he said that he had enough evidence in "gradient flow" (lab talk) to give the diagnosis of lymphoma cells but he also looked at the new biopsy and the lymphoma cells were no longer there!!  WHAT!?!  They were there, now they are gone??  Makes you wonder...
We knew there had to be more, otherwise she would have been a little more excited and shooing us out the door.  My PET scan showed some areas of concern.  A few lymphnodes under my arms, abdomen, and  groin had a reactive response. They can react due to 1. cancer or 2. inflammation.  Our hope is that it is inflammation caused by my inflamed thyroid-- it is all part of the lymphatic system.  If not, based on small size (the biggest lymphnode was 7mm) and the absence of the large B cells in my thyroid, that if it is cancerous that she is thinking it would be a low-grade lymphoma.  This tends to be less aggressive, slower, and typically easier to treat.  So now we wait until January 3rd.  I will be rescanned and if they react again, then a biopsy will be performed to get a diagnosis. 
Are we thrilled? YES. Are we thankful? YES.  Are we still scared? YES.  I know that this is a true miracle.  That dr looked me in the eye on October 15 and said "You have a malignancy and it is Primary thyroid Lyphoma."  There was not "it is suspected" or "it looks like", it was "YOU HAVE."  And now it's, "You DON'T have."  Yeah, yeah, 5% error.  Whatever!!  It was there and now it's gone.  That just doesn't happen.  God happens. 
I asked a close friend, how am I supposed to go back to everyday life like nothing is wrong and not worry every moment that something is going on?  She gave me the best advice.  She told me that you can't let it consume you.  You have to be thankful for each day and until you get bad news, don't worry.  So that is what I am going to try and do.  I haven't gotten any bad news.  I am not going to lie-- we are cautiously optimistic--I still have a few walls up.  But I have a lot of things and people that make me want to move on and live my life.  And here is a picture of my fun life!  Bear raided Kinson's room for a last minute costume!!