Electronic devices disconnect.

Mommy has been SO busy.  She has been staying away from all social networking sites and sadly this blog.  Nothing is wrong, just making sure that we are living in the moment.  Kids grow up so fast and we don't want to miss anything.  

Mommy is also on track to go back to school in September.  It seems that everything is just a little harder these days.  So after jumping through many hoops, she has been accepted into the medical studies program at a local community college.  Its a start to many new things to come.

Thursday April 3rd, Aunt Nancy, John and I attended the PFLAG Awards at the WTC in Boston.  What an honor for John, he was one of 60 students chosen to receive a scholarship to college for his work on the Matthew Shepard Project.  He cast, directed and ran the entire production.  He even donated all of the funds from the show to a local non profit group.  A member from the PFLAG board of directors, mentioned that he was one of the only students whom everyone voted for unanimously.  I am so proud of him, I swear that he is going to change the world.  

Friday April 4th, Tucker had his cardiology follow up at children's hospital in Boston.  Dr Porras couldn't have been happier at his X-rays and his lab work.  Everything looks great!  Dr Porras said that he wants to see us in 1 month.  During that month he will be on a family vacation in Guatemala.  So he told Tucker to behave himself!  Fingers crossed.  

Lollie came over for a visit after work.  

Mommy got to go out for a night out in Boston to celebrate Gary's cousin Julie's bachelorette party.  It was a great night full of many laughs.  While we had dinner at PF Chang's a little boy came over and asked if she was a princess.  It was so sweet.  He even stopped to say goodbye to us as well.  

Tucker also continues his weekly therapy appointments for speech, PT and OT.  He is making progress rather slowly, but he is continuing to move in the right direction.  

This was the first weekend that we felt safe enough to venture out of the house for fun activities. We attended an Easter egg hunt in NH for our heart group, two birthday parties, went out for breakfast and attended Spencer's baseball activities all weekend. 

I think that it was to much too soon.  

Tucker ended up with the stomach bug on Monday, which prompted several calls to Children's hospital regarding Tuckers multiple diuretics.  Mommy spoke to Katie our discharging NP and she checked with Dr Freeman, who was covering Dr Porras while he was on vacation.  Discontinue his morning Lasix and Alnodactone.   We finally got freeze pops and crackers into him and prayed that they wouldn't have to readmitted him for fluid retention.  After his afternoon nap he woke up a healthy child.  We are hoping that it was just a 12 hour bug.  

She can be taught!

Our wonderful VNA RN Bonnie came out today for a visit.  She was running a bit late so she stayed and had her lunch with her favorite patient.  Bonnie had a wonderful ham and cheddar grilled panini on sourdough, Tucker had a milk free cupcake.  Which is currently, the only thing that we can get him to eat.  

After school, Spencer, had a routine appointment with the pediatrician.  Spencer was so brave, while Tucker screamed "all done" the entire visit.  

Since the thermometer finally broke 55, we stopped at Central Park so that the boys could get some fresh air. They had a blast!  Tucker again screamed when we left, " outsidddeeee!!!"  And then again between our car and the front door.  Ugh!

One of the suggestions on how to practice spelling words is writing them in foam.  This is brilliant!  (FYI-my dad works for Gillette) 

Lastly, I wanted to thank everyone who reads this blog.  Your continued support of our family and your positive feedback regarding my writing has pushed me when times have been difficult.  Writing daily has become a struggle over the last week.  Several months ago I got laid off from my employer. Although it was scary to transition to a single paycheck house, we have lost something way more important, our wonderful medical insurance.  Tucker has a supplement, however the rest of us do not.  Our family out of pocket max is simply ridiculous.  So as I am grateful that we had such wonderful medical insurance, I wish that we were able to continue it.  With that said, I have come to a decision that I will never be in the situation that I am now.  Out of work with only a high school diploma on my résumé.  Therefore,  

I am going back to school.  These last few days I have been studying and taking the Accuplacer test.  It tests your basic knowledge of Math and English up to 12th grade.   Having not been in a classroom for over 20 years, I knew that I would test terribly in math.  And I did, TERRIBLE!!!  However, in English I surprisingly excelled.  Well, that might not be the complete truth.  The test is gradual, the more that you answer correctly, the further you get to go.  So Tuesday, I was prompted to complete the essay portion.  A 300-600 word essay on the most boring topic.  Wednesday, I went back for my grade, a 5.  Which means that I would have to retake a high school English class.  

My response: "What, that cant be right?" Proctor: "I hear that a lot. How many words was it?"

Me:"363"

Proctor: "I bet that it wasn't long enough"

Me:  "then you should change the requirements to make the essays longer."

Protor:"you can take it three times, do you want to take it again, you might get a better topic to write about?"

Me:"yes, please!" 

My question, "Can deception be good and bad at the same time?"

I wrote my heart out, sighting examples, research data and interview findings.  (All from made up characters, a teen named Spencer who drove his parents car over the lawn and hit a neighbors mailbox.  A couple, Tucker and Isabella Johansen, were also in the study.)   I signaled to the proctor, he printed my grade, as the assistant pulled the page off the printer I heard, "well, I'll be..unbelievable!"  "I have never even seen anyone get an 8!"  The male proctor, "an 8?!  Well, you deserve a special pat on the back, I have only seen a handful of these in my 13 years working here, congratulations!"  "Now take that home and hang it on your fridge!"  Still in shock,  and now feeling the rest of the class peering at me, "this is like getting 100, right?"  Male proctor, "yes it is, which is remarkable, because there is no spell check, so your spelling and punctuation were perfect.  I mean, who doesn't even miss a comma in a 600 word essay?"   "Well, you don't!"    

I could be seen for hours grinning ear to ear!  So happy (and proud) that I have decided to take the road less traveled which is scary and so much more challenging.  ;o)

Mommy's angry today!

Someone said this to me yesterday..." I'm so glad that Tucker's out of the woods now."  WHAT!?!  Now if you know me, it took all of the strength that I had to not punch her in the throat.  "Out of the woods?"  Let me tell you lady, you have no idea how hard this has been being thrown into the forrest of CHD's with no flashlight!  Did I say that, no, but did I ever want to.   I just smiled and grinned and actually bit on my tongue in my mouth.  What I wanted to say was this. I wish that there was something just one little thing that would make me feel better about saying the following but here isn't!  CHD children die!  They die all the time.  You can be , so called, out of the woods, and you can have completed all of your palliative step surgeries and then you can get a fever, a stomach bug or an infection and it becomes fatal.  Yes, his heart has been corrected, but it will never be "fixed"!  

Being a heart parent is one of the toughest things in the world, you get looked at like a lunatic for being a "germ a phobe" as one virus could take your child from this earth.  You check everyday and night while your child is sleeping to make sure that they are still breathing.  You scream at insurance companies to get them to pay for medications that are not normally covered because without them your child will be hospitalized.  So when you tell me that our son is out of the woods he most certainly is not!  Tucker will never play contact sports and he will never have a normal heart beat.  The next medical step in this process, should his fontan fail, is a heart transplant.  Those are simply the facts!  I have attached more CHD facts below.  

Incidence, Morbidity & Mortality

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birthdefect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

Lifelong Disease

• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
• There are an estimated 2,000,000 CHD survivors in the United States.
• For the first time, more than 50% of the CHD survivors are adults.
• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

• 91,000 life years are lost each year in this country due to congenital heart defects.
• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.

I am glad that I said my peace with that..Now to address Tuckers current state.  

Tucker is currently still on two diuretics and hasn't coughed since we were inpatient at children's.  This morning he woke up and coughed a few times, so his VNA RN Bonnie will be out to see him at 11am.  

Tucker developmentally has taken a huge step backwards.  On March 11th we dropped off a very articulate 2 1/2 year old who was putting together 5 word sentences.  What we now have is a child who has digressed back to two words at a time and many words have been replaced with grunts and high pitched screeches.  We have ramped up his early intervention services in hopes that he will not regress further.  His physical set backs have been the usual, lethargic and the inability to sit himself up from lying down.  That will come in time when his incision heals.  

Tucker was eating beautifully prior to surgery, he was eating meats, veggies and fruits like a champ.  Tucker now wants nothing to do with any protein, meat or eggs are almost completely out of his daily diet.  He snacks quite frequently on Teddy Graham's or crackers.  Since he is also allergic to whey, any dairy is out of the question. He has lost three pounds since surgery and we are struggling to put it back on him.  This will always continue to be a challenge.