12-21-09  Again, time is flying by.  Ryan started PreK in the fall and just loves it!  He has made so many friends and is truly enjoying himself.  When you see him with his friends it is hard to believe all that he has been through.  Nobody would ever know by looking at him. 

He gave us a scare recently.  His alt/ast/ggt (liver counts)  were climbing higher than normal so of course we feared the worst!  It is always on the back burner that he could go into rejection at any point.  Once the liver counts start to climb we worry.  Anyway, we checked and rechecked over a couple of weeks, adjusted his prograf level and did an ultrasound.  The next step was to do a liver biopsy and I was ready to buy my ticket to Boston, but....as Ryan always does... he surprised us with his levels dropping just a bit!  So, we are going to do labs again this week and if all is well and the liver counts are still coming down we won't have to deal with a biopsy or the fear of rejection!!

While all this is happening we discover that Ryan has a very bad ear infection and is now on omnicef for 20 days!!  Usually they do 10 days but the ENT doc felt 20 days would really wipe it out.  His prograf level came back at 13 and our docs in Boston want it somewhere between 5-10 so we have come back down on the dose! Wah hoo!  Poor kid is having such a hard time hearing and he never complains of pain...such a high tolerance!!

 

I've been really thinking of where we were 4 years ago this week....what a horrific experience.  I wouldn't wish that upon anyone.  The fear of losing a child is something that no parent can ever imagine but when it is staring you right in the face you can't even begin to imagine the tremendous pain, fear and helplessness you endure.

We were told there was nothing more they could do for him outside of a transplant.  He would die within a week.  We stood there and watched our tiny baby to weak to cry, too frail to hold.....just wimper in pain.  All we had left was our faith, hope and prayers.  We held prayer vigils by his bedside and from Florida to Alaska we had family and friends praying...... and our prayers were heard and our miracle happened!   Thank You God!!!!!   Ryan was literally reborn on Christmas eve!!   So as Christmas eve aproaches I have so many mixed feelings...the complete joy of having my son with me, the sadness for the donor family for their loss along with being so grateful to them for our gift.  The sadness of not having my dad here with me on Christmas eve...it will never be the same without him but knowing he is watching over us and we have our very own angel!!

Merry Christmas to everyone!!  Thank You for all your prayers...they are heard...always!!

 

8-4-09  The summer is just flying by!  Ryan has been a busy little guy.  He took 2 sessions of swimming lessons and is now swimming halfway across the pool, diving under and most important is able to get himself over to the side of the pool alone, he has done amazing.

He will be starting PreK the end of this month.  He is all excited and is very ready for it, however I am another story :)  This will be so hard to see my baby go off to school but it is going to feel so good that he is able to.

 

Medically-- he is doing great! He had labs done and his prograf levels are still perfect so we are going another 3 mos before labs.  His dose has remained at 1.5 mg for about a yr now!!  We had a recent trip to the CF clinic which wasn't so great.  Ryan has grown pseudomonas aeruginosa in his lungs so we have to start a month of inhaled TOBI 2x a day along with Cipro :(  Not a great thing but we will get through it, we always do! Poor kid also woke up this am with a crusty looking eye so we'll be doing ointment for conjunctivitis as well.  Hey, there are always bumps in the road but we do what we've got to do and move on :)  Kayla did not grow this organism so that is a plus.

 

I was recently reminded of how very blessed we are when I heard from someone in one of my transplant groups, and then went on to read some studies of children who were in need of a liver transplant and due to the massive amount of toxins that lead to the brain they were having behavioral and learning issues post transplant.  I Thanked God that night for protecting Ryan's brain during that horrible time.  As a nurse I should have thought of that at the time but as a mom there is no way my head could fathom such horror.  Thankfully Ryan is fine.  He is extremely smart and has no behavior issues (aside from being spoiled but can you blame me??).  So once again, just a reminder of how blessed we are and how well God is taking care of us and given us so many miracles that we know of, imagine all the ones that we aren't even aware of!  WOW!

 

5-10-09  Happy Mothers Day!!!  To hear those words come from my kids mouths is pure music to my ears!  I tear up thinking just how blessed we are.  Thank You God for the miracle you have given us.  It amazes me to watch Ryan and think of all he has been through.  To look at him, you would never know unless you lifted his shirt and saw his "cross" scar on his belly...which just screams MIRACLE!!  So on this day I am going to just enjoy and appreciate my beautiful children :)

 

4-2-09  Boy I have been slow updating!   Me and Ryan took our trip to Boston and had a wonderful time seeing family, friends and doctors!  Ryan was able to see snow...lots of snow!!

This trip was harder because Ryan is older and really understood that we were away from Rich and the girls.  He was sad on the plane heading to Boston and I thought "this is going to be a long week!" 

He was ok as long as we kept busy but at night he really missed them...me too.  Needless to say the next trip will consist of the whole family!! 

 

Anyway, our appointments went good.  Ryan had blood work which was all perfect and his appt with Dr Kim and Dr Kamin was great too.  They were so happy to see how well he is doing.  Ryan doesn't really remember them but I told him that they are the docs that "fixed his belly" and when they walked in the room he said "You fixed my belly...Thank You!!"  OK so that was a bit of a tear jerker!  Then we had to go for an ultrasound of the graft itself (entire transplanted organ).  Which was amazing to watch as they go through every organ, vessel etc.  Truly amazing.  I got the ok that all was well and was ready to spend the day having fun with Ryan when I got a totally horrific call at my uncle's house from the hospital.  They told me that Ryan's kidneys were different sizes...one was not growing as it should.  One was 8 cm and the other was 6, which was a significant change from last year.  OK, I was so scared and trying not to show it to Ryan.  I had to bring him back for more tests, which would involve an IV and Catheter!  I felt so awful telling him that no..we're not done with the hospital in fact, we're heading back.  Now, what is going through my mind is the unthinkable.  We get back in town in record time and have another ultrasound of the kidney's just "in case" there was an error on the techs part which is what I was praying for.  I was trying so hard not to cry as she put the gel on his little body and started the ultrasound.  I was rubbing his head and singing (Tora lora lora) to him like I always do and he fell asleep.  Well, the tech looked up with a strange look and said "The kidneys are the same size, there is NOTHING wrong"  Thank You God!!!  At this point there was no holding back tears!  I was the most thankful woman on earth!!  I scouped up my little guy and hugged him so tight.  Ryan was quite spoiled for the rest of that trip!! LOL    Oh and I forgot to mention that Ryan is on the Boston Children's Calender...He is "May".

 

 

 

1-29-09  What can I say?  Ryan is doing perfect!  There really is not much to report on him.  We did however buy our plane tickets for Boston!!  Me and Ryan will be taking our annual trip "home".  We are flying in on Feb 26th and coming back home March 4th.  Poor Rich, we will miss his birthday on the 1st!  But I think I can speak for him in saying...having Ryan with us and being able to take him back for a well visit/check-up is birthday present enough!!  We will be staying at Jimmy & Jo's (as always!  Thanks Jimmy & Jo we love you!!) and we'll be able to visit family over the wknd.  Mon & Tues we'll be in Boston Children's doing the usual tests and seeing all our friends and miracle workers in the hospital.  Ryan is on the Boston Children's calendar too!!  I will be getting my copy then :)  I bet Ryan is the only one wishing for snow lol!  He wants to play in the snow and throw snowballs at his cousins!!  We'll see how it goes as Ryan is a true Floridian and is freezing when we get a "cold front" of 65 LOL!!  Can't wait to see everyone!!

 

1-1-09!    When I got home from work last night at 11:40 (ish) New Yrs Eve and made my rounds of kissing my beautiful, sleeping children in their beds... I thanked God as I do everyday for the miracles he has given us.  I know each child is a true miracle from God... but, I have some extra special ones:)  I feel like the luckiest most grateful mom on the face of the earth.  Some may say What??  Is she nuts?  Look at what is on her plate!  But, I honestly believe that what is on my plate is exactly the way God wanted it.  I don't know why, I don't have the answers.  But, I trust that he has given me exactly what I am able to handle.  Sometimes I feel as though he thinks I can handle a little more than I think but I am here, doing it, taking care of these special children and I still have most of my sanity intact!

Saying goodbye to 2008 and hello to 2009 was bittersweet for me.  In one sense it means we made it through another year with the kids all being healthy and of course that is such a blessing.  But, 2008 was a horrible year for me because I lost my dad.  It has been so hearbreaking for us to deal with.  The kids don't quite understand why Grandpa isn't coming back...honestly neither do I.  I am so glad that my dad got to spend so much time with my children, and he was so close to them all.  He got to go to Disney with us for the first time which was huge and I'm so glad that we have so many memories with him and the kids.  Hopefully time will help us all heal.  Kayla said it best when she asked my mom if Grandpa would be here for Christmas, my mom said no he is in heaven and kayla said Nee..He doesn't have to be here at Christmas because he is always here with us in our hearts...out of the mouths of babes huh?  Well Happy New Year to all and I look forward to updating you on how well Ryan is doing!  Which right now all I can say is Awesome!!  He is eating, playing, running, riding his little bike, making me crazy some days...well lets just say he is a very very normal 3 1/2 yr old little boy.  To look at him you would never know what he has been through.  He is on very minimal medications and his last labs were perfect.  Ryan is a gift from God!  He is proof that there is always hope!!   "Don't stop believing"  Thank You God!!!