The Ones Back at Home.

When I started this blog,  I didn’t want it to be a  "family blog"  but more of an informational story line about Kalvin's CHDs and all that we discover along the way.  A way to reach out and share our experiences in hopes that they may help someone else.  I have often felt guilty about not mentioning much about the youngest member of our family,  Finn.  This last experience in the hospital;  however,  made me realize something I really don't think I was very conscience of...Finn is a huge part of Kalvin's CHD story.   Finn is affected by Kalvin's CHD just as much as the rest of us.  He also was the forgotten one in the days leading up to and surrounding Kalvin's cath lab.

Finn absolutely adores his grandmother,  my mom  (also a very special person who is so often over looked).   Finn cries when grandma leaves.  Grandma spends, at a minimum,  every Friday with Finn and he can't wait for Fridays to come.  If his nap runs late and grandma leaves before he gets up - Finn is crushed.   Finn has a passion for vacuuming,  making coffee and tea,  for using his blender and baking cakes...all things grandma is fond of as well.  They are like two little peas in a pod at times.  They have a special relationship and it makes me so happy that they do.  So, when grandma came to stay with Finn during Kalvin's hospital stay,  I didn't think twice about how he would handle us being away.  I never gave it a second thought.  He would be with grandma.  He would be safe and happy - probably cry when she had to leave.

Grandma came over,  even with a terrible flu, because grandma never lets us down.  Never.  She is the glue that holds us all together...my entire extended family.  She was a science teacher who then became the school nurse and now works in a hospital as an ICU nurse!  So you see, not only is she reliable and loving,  she is smart and knows absolutely everything about hearts.  Everything.  We are so very blessed to have grandma. 

The morning we left for the hospital Finnie got up unusually early...5 am (a normal wake time for Finn is 8:30)!  He knew that Kalvin, Lars and I were leaving for the hospital so I am guessing that is why he was up so early.  He was not happy, and in hind sight,  he was probably a bit nervous because we rarely,  if ever, all three leave together without him.  He asked about us a few times throughout the day and grandma told him that we were at the doctors with Kalvin.  Maybe not the best place to have told him we were because he loves to go to the doctor's office... to press all the elevator buttons! 

When we ran into a bit of trouble with Kalvin in the cath lab recovery room,  I called grandma to tell her what was happening and she immediately told me to stay overnight with Kalvin and Lars.  "Kalvin will want you to stay overnight too,"  she said.   "We will be fine here. You stay."   That is the kind of person grandma is.  She always puts everyone else first, regardless of how terrible she was feeling with her cold virus.

Finn awoke the next morning at 5 am again looking for us.  Grandma comforted him, but he wanted mommy.  Mommy is always home in the middle of the night.  "Where was mommy? " he wanted to know.

When we arrived home late that afternoon,  Finn was not happy.  He looked at us and instantly shouted, "I hate you!"  Ouch.  That stung.  Then he ran into the other room when he saw us and when we told him,  "We missed you, Finnie!"  he replied,  "NO YOU DID NOT MISS ME!"  with the cutest little pout on his pudgy face, only it wasn't cute...at all.  It tore at  my heart.  Then he shoo'd us away with one hand.  It was heart breaking.

Finn proceeded to have the classic two year old reactions - he ignored us and told us that he did not like us and told us,  "GET AWAY!"   It was terrible.  It made me think.  Lars is always saying that Finnie always gets the short end of the stick.  And I guess I never really fully saw it that way before this experience.

Finn proceeded to have sleeping issues.  Not wanting to go to bed,  waking up in the middle of the night, wanting to sleep with us,  getting up really early...all the classic signs that his world had been rocked and he was not going to let us forget it anytime soon.

I work full time so Finn is use to me being away during the day,  but he had grown use to all of us being home together while Kalvin was recuperating.  We didn't give it much thought,  but when grandma came to stay for a few hours one morning,  Finn threw up.  We thought he had a stomach virus.  Then, the next day when I was back at work and the babysitter came,  he threw up again, but only in the morning.  We became concerned that it was not a virus.  He told Lars, "I DO NOT WANT BABYSITTER HERE!  I WANT MOMMY!"  I felt terrible.  It could just be his age and a pure coincidence that he is behaving this way now,

but the timing of it all just seemed too close to Kalvin's surgery not to connect the two.

There are so many times Finn takes the back seat so that we can focus on Kalvin (like most little brothers experience)  and he is usually a good sport about it.  He gets to spend extra quality alone time with grandma - what could be better than that?  Right??  But I guess what I was over looking was the way Finn sees it.  He sees the three of us going off together without him, not realizing we are going for long medical appointments.  Us leaving without him.  I know some day he will understand better, but it still doesn't make it easy for him now. 

We waited a very long time for Finn's arrival.  Kalvin wanted a sibling and Lars and I wanted more children, but it isn't always quite that simple.  We we were all overjoyed to finally welcome a baby into our family again.   Having Finn around has been so wonderful in so many different ways for Kalvin.  Finn makes us laugh all the time.  He is such a ham.  Finn exuberates such emotion all the time.  Just today we told Finn we were going to make popcorn and he screamed with delight and Kal looked at me and said, "I just love his emotions.  He gets so excited when we just say the word popcorn - it is so cute."  Finn really is the best medicine for Kalvin,  for all of us.

Finn is a man of adventure.  We love the sound he makes when he runs across the floor "deet  deet ...deet deet...deet  deet."  He does not walk anywhere, he runs everywhere which I absolutely love about him.  The pitter patter of his tiny feet is a comforting sound that always makes us smile and lets us know exactly where he is!  He is so full of energy and character.  He has an infectious giggle and a laugh that warms your heart.  The thing about Finn that makes him so "Finn" is he can be sweet and kind and then wild and feisty all in the same minute.  I guess I just didnt realize how busy we are at times looking out for Kalvin and his emotional state that we were overlooking Finn's feelings.  I am sure most siblings of children with a chronic disease "get the short end of the stick" more often than intended.  There are so many people affected by CHDs.   We love you Finnie and grandma!   Thank you for all you do!
                                                                                                                                             

Finn and grandma...at one day old!


There are six entries in total relating to Kalvin's cath lab.  You can read them here 1, 2, 3, 4, 5 in order.  Thanks for stopping by.  We love to hear your thoughts and comments!

The Stent Is In!

We woke up ready to brave the day and were surprised to see we would also be braving 4 inches of fresh snow...and it was still falling.  We knew it was going to snow, but thought it was starting later in the morning. The snow plows and slick roadways were a nice divergence for our minds on this particular day.  We were headed to Children's Hospital Boston for Kalvin's fourth catheterization procedure.  This would be his first (and hopefully only) stent.

Kalvin was fine and didn't really say much as the anesthesiologist and her assistant started discussing the details of the surgery.  They described the procedure to Kalvin as a series of  "pictures"  the doctor was going to be taking of his heart.  Genious!  Then they started getting a little too specific about exactly how this picture taking procedure was going to go down.  I tried talking over them to let them know it probably was not the best idea to let Kal know he was going to be wheeled out of the room we were all in to go to the cath lab...without us.  Once he heard this, panic set in.  One of  Kalvin's big fears (other than needles) is being without Lars or I in a strange place.  Even at home, Kalvin will panic at times if he doesn’t know exactly where we are so realizing he was going to be in the O.R. without us,  scared him...alot.  He began drilling us with one great questions after another.  We attempted to answer all his questions, but it was obviously making him more and more anxious.  The anesthesiologist realizing this, suddenly said she thought he should have his "drink" right away.  Kal drank it like a champ,  no problem.  I understand this is an impressive feat because the taste is horrendous and most kids end up spitting it right back out.  Yeah,  one hurdle down.  Then Kalvin continued on with the questions,  tears pouring down his face.  We all waited for the drink to take effect.  It felt like hours,  but it actuality it was only about 15 minutes.  It was a strange and uneasy feeling to watch Kal become more and more intoxicated from the "drink"  as time went by.  Not something you really want to witness...at least not until your baby is well over 21.  He started smiling and waving to one of the nurses - he really is such a flirt.  The good news - he should not remember any of this the anesthesiologist reminded me,  the pink portion of "the drink" is a "memory eraser.   Hmmm, again, not so sure how I feel about this.

And then, the absolute worst part of the day had come.  Time to say goodbye and tell him one more time just how much we love him.  Time to place his life in someone else's hands.  This part never gets easier.  It was the absolute worst part of his surgery at 5 days old...wheeling him to the elevator that led to the O.R. and telling him how much we loved him and how strong he would need to be.  It was hard to hold it all in then and not completely crumble to the floor.  It is just as hard now.   And it is even harder to turn and see your husband doing the same.  No one talks.  We just let him go.  Then we hang on for the ride.  You hope and pray he will be alright.  You block out all the thoughts that try to creep into your head.  You block out the thought that this is the procedure that permanently damaged his artery and now his leg when he was 3 months old.  You try not to think about what could be damaged this time. You try not to think about little Mia who lost her life just months ago in a cath lab in Florida.  You just put on your mental blocking helmet and you block, block, block.

The doctors and nurses in the cath-lab are wonderful.  They know how you are feeling and do everything possible to make you comfortable.  The nurse that stays with Kal throughout the procedure contacts us via our cell phone to let us know when he is fully sedated and stable.  Then Kalvin's cardiologist will meet with us to update us on what they find and what they plan to do.  And finally, the nurse will let us know when the surgery is complete and he is starting to wake up.  The procedure was expected to take 3 - 4 hours.  It took a bit longer.  It was stressful. I just tried to remember through it all - the motto of the day - block, block, block.

I always have so many big plans for this 4 hour chunk of time where I am left to sit and wait.  Lots of things I am going to catch up on. Funny how my mind doesn't cooperate.  I just sit and sit. Try to read, to write and to hold a conversation,  but none of that happens.

We took a walk to get a coffee and bumped into Kalvin's nurse from his original surgery,  Elizabeth.  She is part of Kalvin's family now.  She spent 15 days trapped in a room with us...Kalvin's first 15 days of life and the most stressful 15 days of our lives, thus far.  She knows us.  She is always a joy to see.  It is sad,  and a blessing in a way I guess,  that Kal doesn’t remember her.  We have seen her numerous times at Children's since 2005,  but most of these times Kalvin has been in the O.R. so he doesn't see her or remember her when he does.  A familiar face at the Hospital is always so comforting for Lars and I though.

We headed back to the waiting area to uhmmm, wait.  Dr. Brown,  Kalvin's cardiologist,  came to the door to meet with us.  There is always this sinking feeling when the doctor arrives in the doorway.  You know he is coming to update you,  but your mind jumps ahead and instantly thinks the worst.  They found the gradient in Kalvin's coarc to be about 15% which is not bad at all,  but they decided to go ahead and place the stent in to see if they can get more blood pumping to his leg.  The pictures of the femoral (leg) artery were not good.  The portion of the femoral artery that was damaged was bigger than expected and the collateral arteries (the spaghetti like blood vessels that grew around the damaged area to reconnect the femoral artery) were,  as the orthopedic had surmised a few weeks ago,  pretty tangled up.  The artery in his leg will need to be addressed right away and;  therefore,  the doctor wanted to add the stent to be sure the aorta is as wide as a normal person's and pumping as much blood as possible down to his legs.  A stent to open the coarc was the best choice at this time.  Kalvin weighs 75 pounds now so the stent should not have to be removed (which would require major surgery) or replaced at any time.  They may have to balloon the stent open again when he is in his teens, but he is big enough now that it will not have to be removed or replaced.

It is ironic to think that one of the procedures that helped save Kalvin's life as an infant - threading wires up through the artery near his groin to reach his heart (same as today’s procedure) - destroyed the blood vessel that feeds his left leg with blood.  A network of spaghetti - like blood vessel grew and took over but are not delivering enough blood,  causing the left leg not to grow as it should.  His left leg is now about an inch or more shorter,  and much weaker than his right.  If you recall from this post earlier:  A Silver Lining.

The news was bittersweet. We are overjoyed that there is a possibility his leg can be repaired and that his heart his looking healthy.  There are no signs of stress from any of the repairs made when he was an infant. His heart will never be  "fixed"  it can only be repaired.   The cath-lab is the best way to measure the blood pumping through his heart and check on how it is functioning.  All is looking good.  They will take a look at his pulmonary arteries again in a catheterization procedure in a few years.  The lung scan from the pre-op was about the same as it has been all along with even a slight improvement which is absolutely wonderful news.  His valves are looking okay.  We just have to deal with his leg now.  I will detail this in a later post because it is very involved.  I just pray it is not too much for the little man to handle.

We met Kalvin in the recovery room - same room we left him in many hours ago.  Anesthesia does not really agree with Kalvin.  He is such a gentle loving person and not so much when coming off the anesthesia. He faced 6 hours of lying on his back...with a stuffy nose.  He was not happy and immediately began asking when he could sit up.  Similar to a car trip where a child asks how many hours have passed and it has been only 5 minutes,  the repeated question of  "when will be there"  or  "when can I sit up"  begins to exhaust you.  It was challenging for all of us.  He complained that he was hot - but thankfully no fever.  We kept cold wet towels on his forehead and face.  We removed blankets and wet his feet to try and cool them off,  but he still complained that he was hot,  so very hot.  He would cry that he was thirsty,  but couldn't drink.  They tried to give him ice chips,  but he didn't want those - mostly because he had a tooth sealant applied to his teeth a few weeks ago and the dentist told him he can no longer eat ice...he took that to heart (no pun intended) - she would be so proud!   All we had left to do was wait out the six hours...good thing we had plenty of movies to watch! 

Kalvin had recently seen the movie E.T. We tried joking with Kalvin about his "E.T." finger...he was not finding it amusing in the least.

Continued in the following post: The Fifth Hour.
There are six entries in total relating to Kalvin's cath lab.  You can read the other posts here 1, 2, 3, 4, 5  in order.  Thanks for stopping by.  We love to hear your thoughts and comments!

The Hard Part

We headed into Children’s for a day of pre-op testing. We knew today was going to be the hard part for all of us. I knew there were going to be needles involved. Kal did not. I knew this would was going to be the hardest day for him. Kal did not...or so I thought he did not. Apparently, I was wrong.

We headed up to the Catheterization Pre-op area and immediately were greeted by a very familiar and friendly face-Megan. We were so excited to see Megan, who we have not seen in 6 years and who, by the way, looked exactly the same. It was comforting to see her there, like seeing old friend. Hard to explain how seeing Megan just provided a layer of comfort.

When going over the day’s activities, blood work was mentioned and Kalvin instantly went into a state of panic which everyone seemed to take note of. We all gathered around Kal, trying to convince him this was all going to be easy peasy. He really wasn’t buying any of it. As we went off to get x-rays with numbing cream bandages applied to his arms, he repeatedly tried to fight back the tears as he asked about the needles. We kept reassuring him that it was going to be so easy. None of which really worked. AT ALL.

Once the chest x-ray was complete, a wonderful nurse, Maureen, met us to take us to radiology for our lung scan and blood draw. Yet another wonderful thing about Children's, everyone quickly picked up on Kalvin's anxiety and the "A Team" was called in to draw this kid's blood. They also decided to combine the lung scan and the blood draw into one event, all on their own. I didn't even have to suggest it! A needle is required to shoot the radioactive dye into Kal's hand so they can calculate his lung capacity in each lung through a nuclear imaging machine or "tube." For a boy petrified of needles, combining the blood draw and the dye insertion really makes a difference. All the difference, really. Maureen chatted with Kalvin about his chair lift ride last night at Ski Bradford. She did an amazing job of distracting him and building up his confidence. She was simply great.

Once we arrived in radiology, the "A Team" was there to greet us- a team of three AMAZING nurses. The A Team, Maureen, Lars and I all worked diligently to ease his mind and soul. It was overwhelming to witness this team in action. You could just tell they love what they do and are really good at it. They genuinely appeared to be taken in by Kal. They kept saying how wonderful he was, what a great personality he has- even as he tried to fight back his tears and argue with them about the necessity of the blood draw. Finally, Nurse Diane said, "Kal we don't care if you cry. Let it out. Go ahead and cry. We don’t care. We are here to help you," and he seemed to relax a bit.

He doesn’t' miss a beat, this boy. He is so in tune with all that is being said and all that is going on around him. The nurses kept reassuring him, "There are no tricks in here. We will tell you everything that is happening, every step of the way."

And they held true to their promise and reassured him of each and every step. It made a difference. They, made a difference today.

Once it was all said and done, Kalvin laid on the tube and took his shot like a brave boy. Everyone was shocked, except Lars and I. We knew the anxiety leading up to the event was the worst part for Kal. The hardest part. Once the needle went in, a teary eyed Kal looked up at us all and said, "That is it? It is in? Wow, that was easy." And that was it. Hardest part over...for Kalvin.

We headed back up to the cath pre-op area where Lisa greeted us and administered the EKG and blood pressures. We joked with Kalvin about how this use to be the hardest part for him. We had to keep him still as an infant and a toddler while the EKG ran. We tried desperately to keep his arms and legs still while the blood pressure cuffs squeezed each limb and if we didn't-we would have to start the process all over again. It was draining on everyone involved. Now, ironically, this is the real easy peasy lemon squeezy portion of the day. Kal was hamming it up-calling Lisa, "Lis" who then reciprocated by calling Kalvin, "Kal." Lisa made it a really fun part of his day. A great way to wind down the afternoon before the big day.

Tomorrow will be rough for Lars and I and for the doctors working on him. I can't explain the emotion that comes over me when I am in that Hospital. My eyes well up at various times of the day and always when I least expect it. My breathing seems to stop. And time stands still as I watch things going on around me in slow motion. I don't even know what triggers all these reactions half the time. The memories? The thoughts? Baby Isabelle upstairs recovering from her second major open heart surgery at 5 months old? A stranger passing by? A mother, weeping out loud in the elevator, trying desperately to hold her cry until Kalvin is off the elevator? All of it? It is all hard. The hard part.

We left the hospital and headed for home. We stopped briefly to get something to eat and to get Kalvin some new sneakers, his foot was measuring two times bigger than his current shoes. He was so upset to learn that he does not fit into "light up" sneakers anymore. We forced him to buy a new pair even though they don't light up. He was not happy. We tried desperately to convince him they were very similar to Tom Brady's sneakers in hopes this would make him think twice about the new shoes. He wasn't buying it. He turned to me in the parking lot and said, "Mom, I am sorry, but these sneakers just aren't my style!"

Really, I thought. At seven, you have developed a style? I guess he has. He is his own little person. I am so attached to his style, to this little person.

Then he began sharing some of his apprehensions about the next day, "Mom, I am scared for tomorrow."

"Why?" I asked, "What are you afraid of?"

"I'm afraid I will wake up in the middle of the surgery," he said.

I reassured him that the doctors know just the exact amount of medicine to give him to keep him asleep as long as they need to finish their work and that they can always administer more of that medicine if need be. He seemed to believe me. He seemed to relax a bit.

Then he said, and ever so seriously, "Right mom. The hard part is for the doctors tomorrow, not me."

There are six entries in total relating to Kalvin's cath lab.  You can read them here 1, 2, 3, 4, 5 in order.  Thanks for stopping by.  We love to hear your thoughts and comments!

The Best Medicine.

Our trip to the Developmental Center at Children's was pretty uneventful, however a bit of stress seemed to somehow find its way into the day. We started off with an information session with the doctor. Reliving all Kalvin's anxieties and fears is a bit hard on the nerves or should I say on my nerves. Kalvin and his dad had the smarts to take the opportunity to "tour the floor" while I talked. I left feeling a bit relieved, like the doctor was going to administer the tests and come back and tell me everything was fine, normal and worry free. I also left with a few questionnaires to fill out. I settled myself in to the waiting area while Kal and his dad went off with the doctor to start the testing.

The questionnaires are a list of questions that I need to answer with “Never, Sometimes or Often.” I started reading the questions and quickly felt my stomach knot up, throat tighten and the sense that things were going to be "fine, normal and worry free" completely diminished.

Meanwhile, the boy beside me and the boy across from me waiting to see their doctors struck up the cutest conversation about video games. It was hard to concentrate on my questions and I absolutely LOVED the distraction. Another mother and son sat down to my left and the two mothers quickly struck up a conversation. Everyone is on the same playing field in this waiting area. All mothers wanting the absolute best for their child and relating to each other in a way a lot of “other” mothers just couldn't imagine, so I won’t even try to explain. There is a sense of understanding that rallies these mothers together and I quickly realize that this is a "club" I am now a part of.

As I try and complete the questions, I find myself skipping over question after question, thinking how to best answer them. I am having trouble breathing. Sweating. Is it the coffee I am drinking that is causing my heart to suddenly race? I realize I am sighing heavily. Sigh after sigh. And then, I feel the mothers’ eyes upon me. I realize they think the boy’s conversation is bothering me and thus, my repeated sighing. I look up at the mothers and explain myself, "I just hate these questionnaires."

Immediately the one mother replies, "I know. They ask the same question in different formats repeatedly. It is like they are trying to trick you!"

Ahhh, yes, they get it. I don’t have to say much and I know we are all in complete understanding of one another. The three of us nod and we know we get each other. It is unspoken. We are all here, perhaps, for different reasons, yet ultimately , we are all here for the same reason. "Yes! That is it exactly," I reply with a grin, "Who doesn't do all of these things SOMETIMES? It is just hard to answer accurately."

I decided to leave the remaining unanswered questions for my husband to review and I moved on to enjoying the boys’ conversation-it was priceless. Two boys who have trouble making friends, bonding in the waiting area was the best medicine for my soul and for my stomach and the overall sense of panic and doubt that had taken over.

The doctor walked Kalvin and his dad out to meet me. The doctor looked, uhmmm how do I describe this, troubled. She looked at me in a sympathetic sort of way. I felt like she had just unveiled something about Kalvin that she didn’t think we would not want to hear. Like what was troubling Kalvin was so very obvious and we were blind not to see it. I instantly became nauseous...again. So much for that peaceful feeling I felt listening to the boys bonding. It was completely undone. I had to really refrain from blurting out, "What did you find out? What are the results? Tell me. Tell me NOW." I just smiled and tried to gather myself… silently. We won't know the results unitl January 28th.

The mother and one of the boys from the waiting area were while waiting with us for the elevator. The boy turned to his mother and said, "Mom, did you ever think that was possible? That I could meet a friend here?"

"Well, yes honey, anything is possible," she stated.

"But mom, did you think someone like me could ever meet a friend here?" he asked again.

"I know it is hard for you to meet friends. I hope he uses the number and calls us. I was so happy you made a friend," his mom answered.

I smiled. It was just such a beautiful part of my day. It gave me hope. Such a wonderful thing to witness and I too prayed that the other boy and his mother would use that phone number to keep this rare bonding, this connection going.

We headed down towards the lobby when Kal discovered an outdoor basketball court nestled in the middle of Children's Hospital. Kal's dad had the great idea to ask at the desk for a basketball and the three of us headed outside for some real medicine of our own-shooting hoops. Nothing relaxes Kal and takes his mind away quite like sports. The three of us played for a while when I left to go and pick up some forms from the doctor. I returned to find them sitting at the picnic table. My husband looked concerned. "We sat down because Kalvin needed a break. He needed to rest. He was sweaty and having trouble breathing," he said in an almost panicked tone.

"Ok, " I replied. "Should we get going?"

Not sure if it is Kal's coarc that had him tired and sweaty or if he was getting a virus, but it is so out of character for him to ever ask to sit and take a break when he is playing a sport with his dad. It set off a panic feeling in me and in my husband. Good thing we are headed in to the cath lab in a few weeks I thought. Into the best hospital in the world.

A Silver Lining

New Years Eve is here and with it begins our month of adventures at +Children's Hospital-the best Hospital in the world...in the world. We are so grateful for the amazing care we receive at this Hospital. I never thought I would enter the lobby to a hospital and actually feel a sense of comfort. Although I spend the entire drive to our appointments with my stomach in my throat, entering the lobby of the Hospital always brings me a sense of comfort. It is similar to driving home and turning the corner onto your street and feeling that sense of complete relaxation, like you are right where you are meant to be. That "ahhh, I am home" feeling. When I enter the lobby of Children's Hospital and hear the familiar “dinging” of the balls chiming in the display and take in the scent of Au Bon Pain, I just breath a little easier . The funny thing is I think Kalvin experiences this same sense of comfort. The silver lining in having a congenital issue is it is all you know and therefore doctors are very familiar to you and not someone you fear. We have the absolute best doctors and nurses and staff members at Children's and for that we all feel truly blessed.

Kalvin is having his cath procedure on January 16th. It was not planned, at his annual cardiology visit they decided it was necessary. It is time to widen his coarc again, but this time most likely with a stent. The cath also provides the doctors with a great opportunity to get a clear look at his heart and how it is functioning. They will also take this opportunity to get a close look at his his pulmonary artery and decide if they should widen it as well while they are "in there".

Prior to the scheduling of the cath, Kalvin had his annual orthopedic visit scheduled for January 15th so we moved it to December 31st! We also have his 3 year IEP (Individual Education Plan) review at school in January which brings us to Children’s Developmental Center a few times in January as well. And for the finale…braces on his teeth! The braces are to prevent a jaw issue from worsening until they feel he can tolerate further treatment. We postponed the application of the braces as long as possible-having no idea January would be chalked full of doctor visits and procedures! Kalvin will be a new little man come February!

We kicked the visits off with the trip to the orthopedic. We were thinking this visit would be easy peasy and pain free, but Kal is really worked up about it. We were hoping to get him fitted for a shoe lift. His left leg was damaged in the cath lab when he was 3 months old while they were trying to widen his coarc. His left leg now measures about 3.8 cm shorter than his right. The muscle mass in the left leg is also considerably less than in his right-about 1 inch in diameter smaller in his thigh and same in his calf. He doesn't want anyone to see the lift in his sneaker and is concerned it may accidently fall out of his sneaker when he takes it off. Funny, I never really know what is going to trigger anxiety in him the most. So while I am sitting back thinking this is the easy visit of the month, Kal is completely wound up and panicked about this lift.

Kal started commenting that he could really notice the difference in the length of his legs-he felt a bit lop sided he said. It was then that I actually decided we should try a shoe lift. I was thinking it would be most helpful with skiing and skating. The doctor says they don’t find lifts to be too effective unless the discrepancy is over 2 inches, but we all figured it couldn't hurt. So we will give the shoe lift a try. We will be fitted for the lift on January 15th-yet another visit scheduled for January!

The X-Rays went smoothly thanks to the wonderful technician. The staff at Children's is amazing...have I said that? You can see in the pictures he is totally relaxed; although, he would not be happy if he knew I published these pictures as he was trying to delete them from my phone earlier today!

The visit with the doctor was a little alarming. We explained our reasons for wanting a shoe lift. My husband had taken this video of Kal ice skating and we showed the doctor so he could see how limited the use of his left leg is at times.

The doctor then completed a strength analysis of his legs and concluded that he was very concerned about his left leg. “While he looks completely normal, there is something terribly wrong with his left leg,” he stated.

Uhmmm, yes, we have been telling you this for 5 years now-I was thinking, but did not speak. Just sat there with the wind knocked out of me. What did he just say? We are just here for a lift. Wait. This is suppose to the easy visit, now we are looking at an issue? Uughhh. We have often sat in the waiting area of Children’s Orthopedic Department feeling almost selfish and silly. There are lots of children waiting to see the good doctor with many more visible issues than Kal has. I guess that is one reason we never really pushed for further treatment of his leg. We just pointed out the weakness to the doctor and left it all up to him. Perhaps we were just “blocking out” the severity of his leg weakness. We were very willing to take the news that there was nothing else they could do right now and move on. We are getting very good at “blocking” things out. Putting the blinders on. It is a great survival mechanism at times.

So the day has arrived when we need to do more for his leg. The good doctor ordered an additional weekly PT session to focus on the left leg and see if it is possible to build the muscle mass in it. Kal has been going to PT since he was three, but this is the first time we will be adding a session outside of the school system. We will come back in 6 months and check the leg strength and see if we have made any progress. The doctor also put an “order” in with the cath lab to have them check the blood flow in both legs during the upcoming cath lab.

The leg length discrepancy will be addressed only if the discrepancy becomes greater. The doctor has explained that they can determine the growth capacity of the shorter leg and stop the growth in the good leg when it reaches the capacity of the short leg. They will do this in surgery by inserting a pin in the longer leg. Amazing.

I am having trouble getting this whole visit out of my head. I am not sure why. I guess it is the guilt and feeling that we should have stressed the weakness of this leg when he was younger. Maybe if we placed more of an emphasis on the difference in the muscle mass instead of focusing on the length discrepancy, it would have been addressed. It is hard sometimes to know when you are being a good advocate for your child or a paranoid parent. I guess I will just block these thoughts out and move forward.

We now have Monday, January 7th to look forward to. Our next stop at Children’s Hospital this month! It is a good thing Kal and I feel so comfortable there…in the lobby with the sound of chiming balls and the aroma of fresh baked goods coming from Au Bon Pain!

The Blame Game

This is one of my favorite pictures of Kalvin taken by a wonderful friend-photographer, +Pam Trudel. He is about 6 months old. The second picture is one of Kalvin when he is one month old being held by his cousin Logan for the very first time.

Last night before going to bed I realized Kalvin had left our pet turtle, Cookie's, lights on and I went to turn them off. I glanced to my left and noticed that our hamster, Hammie, was not in his bed. I panicked at first because Hammie has been known to escape from his cage and wander about the house. However, what I discovered was far worse than an escaped Hammie; it was Hammie sleeping by his food, something he never does. Kal received Hammie from his cousin, Logan, and Logan had rescued Hammie from his father's chiropractor's office. Hammie’s age was estimated to be somewhere between 5 and 6 years old. In hamster years that is over 100- I think. We purposely spoke of how old Hammie was to prepare Kal for this very day. Kal brought a book home from the library all about hamsters and it actually estimated their life expectancy at around 3 or 4 years so we knew we were on borrowed time.

I noticed Hammie was still breathing and I called his name and adjusted his cage a bit. He moved, but not much. I got a little weepy and went into my bedroom and told my husband I thought Hammie was in the process of passing onto Hamster Heaven. To which he replied, “Nonsense!”

The next morning Kalvin came running into my bathroom holding Hammie and crying. "He is gone mom, Hammie is dead," he whimpered. He moved him around and tried to wake him up, but we both knew he was gone.

We went downstairs to get a box to place Hammie in and Kal kept talking to him and trying to wake him, but he just was not moving. Then Kal told me he thought maybe Hammie was tricking him. He placed him on the counter to see if indeed this was a trick of some sort and Hammie's little feet stuck straight up in the air. “Oohhh, he’s dead all right,” Kalvin cried out. “ There is no faking that!”

Once Hammie was tucked away in the box awaiting burial, Kal quickly changed tunes, "Hey, can we get a new hamster today?!"

What? This is not the Kalvin I know. Is he really going to let this go this easily? I pondered for a minute and then told him it was is awful early to replace Hammie. “After all,” I told him, “we haven’t even buried him yet.”

"Well a new hamster would make me feel sooo much better,” Kalvin pleaded. “ No one will ever replace Hammie, but a new hamster sure would help!”

Then as quickly as he seemed over Hammie, the next phase of mourning began. "Oohh, this is ALL my fault. I didn’t hold Hammie enough. I didn’t feed Hammie enough. I was a terrible owner. This is all my fault, " Kalvin cried. Over and over.

The strange thing is, I was just thinking the opposite. Almost like Kalvin sensed that Hammie's life was ending soon, he started holding Hammie more than usual. He had him in his hamster wheel, crawling around on the floor with him. I was thinking these last five days were wonderful for Hammie. A nice way for Hammie to end his long happy life here. I told Kalvin all this and reminded him of those final last days-how much fun they had together and what a wonderful caretaker he had been. He lamented over his so-called neglect for hours. It was sad to listen to especially since it just wasn’t true. Kalvin was extremely devoted to Hammie and took excellent care of him-always.

I was stunned. A 7 year old is being this hard on himself? Really?? It was hard for me to believe that he was actually blaming himself and over something that was totally out of his control. Over something that just was not true.

And then I thought about all us moms out there.  Our guilt. I thought about all the heart moms out there,  who despite knowing they did absolutely nothing wrong,  feel this pang of guilt that somehow we are responsible for our baby’s broken heart.  Was it something we ate, something in our water, in our air??  Was it something we did,  not even aware of now,  that caused this defect to happen to our baby's heart?  Science and doctors tell us no, we are not responsible.  But we don’t believe them...not at first, so we continue to look and search for answers and still we come up empty.  But the blame is there, blaming ourselves for something that was not our fault.  For something that was out of our control.  We beat ourselves up over something that is just not true.

I hope that in 2013 we all will try and practice random acts of kindness on ourselves.  Try and talk to yourself the way you talk to your children and your best friends.  Change that voice inside your head that is continually telling you things that are just not true.  Make that voice encourage and motivate you instead.

Below are pictures taken the night Hammie passed into Hamster Heaven…this is Kalvin with Sam-our new baby hamster. While I knew it was early to replace Hammie,  I also knew Kalvin knew Hammie was not replaceable.  Sam gave us all a reason to smile and soften the voices in our heads.

RIP Hammie 1902 – 2013.

So Hard To Say Goodbye...

Our Elf on the Shelf, Flyie, has been visiting our home for the month of December for the past three years. The first year Kalvin seemed to almost be afraid of the little fellow. Kalvin would stare at Flyie and voice his concern that the he would fly into his room. The following year Kalvin really warmed up to the little guy and he quickly became part of the family. That same year, as December 25th approached Kalvin began expressing his sorrow at the thought of Flyie leaving us for another year, but he didn’t protest too much once Flyie flew back to the North Pole on Christmas Eve. This year Kalvin began telling us about mid month how "SAAADDD" he was that Flyie would have to leave soon. Goodbyes have always been hard for Kalvin. When we have friends come stay with us, he almost always cries when they leave-even when they are adult friends. He just doesn’t like change and like most of us, “goodbyes” are hard to say. I have to admit though, the elf thing is throwing me a bit. Meaning Kalvin doesn’t pay that much attention to the little guy. He faithfully searches for him in the morning, but I haven't noticed him paying attention to him at any other time of the day. But the continuous tears and sadness this year have me wondering how Flyie’s departure is going to go over.

Then a friend of mine sent me this photo.

And it gave me an idea.

I thought maybe a book of pictures of Flyie in his various hiding spots would be fun for him to leave behind for Kalvin. We started snapping pictures of Flyie in his various hiding spots around the house…and then the creative juices began to really flow. I think I have been working in the finance industry too long because I was having way too much fun with a little creativity and this elf.

A friend sent me this picture of their elf. And we laughed and laughed with each other over our elves and how much fun we were having with this "project"...clearly the stress of the holidays was getting to us!

Kalvin continued to perseverate over Flyie leaving. He wrote Flyie a letter that was just too cute and sad all at the same time-it said "Flyie you are a good friend. Love, Kalvin, Dad, Mom and Finn"

Even after Flyie left cards and matching monogrammed pj's (thank you Grandma) for Kalvin and Finn on their beds Christmas Eve, the moaning and whining all over Flyie's departure continued. We were beginning to think Flyie may ruin Christmas!

Then my husband had this fabulous suggestion that Kalvin write a letter to Santa asking if Flyie could stay through the new year. This seemed to relax Kalvin. I got right to work on +Shutterfly creating the book and decided to title it:

The Fun I Had While You Were Sleeping

and have Flyie leave it behind when he flew to the North Pole on New Years Day! The book was a huge hit! Kalvin just loves it and doesn't even seem upset that Flyie is gone. The only problem...Kal is examining the pictures and asking LOTS of questions that I wasn't really prepared to answer, but at least 2013 started off with lots of smiles and giggles as we look over all the adventures Flyie had around our house!