Monday, August 18, 2014

Staycations are not for us. {LARGE family, MUST travel}



Every year, we have the same problem.  We put off all of our house projects, hoping that we will be full of zest and energy during the summer. In May and June we are SO ready. We can see the light at the end of the tunnel.  The days are about to be leisurely, and we will have time to sit and chat over coffee by 9ish. This is to be followed by a little work around the house, and then we are off to a fantastically fun afternoon trip.  You see, we are both special education teachers. We are just as bad as the students as we count down the days, the hours, and the minutes until we can yell it:  SCHOOL’S OUT FOR SUMMER!

We make a fun bucket list that usually looks something like this:  Watch Hill, Ocean Beach, strawberry picking at Deeply Rooted, blueberry picking at Evergreen, outdoor movies in Canton, the Bronx Zoo, the splash pad in Plainville, a Rock Cats game, the Science Center, and of course Lake Compounce.  Repeat.  Add any free kid activity that I can find. Repeat.

This staycation sounds great, right?  I mean, who needs a vacation when we are just doing a little work around the house and fun local activities all the time? 

Add in the following and stir well: summer camp,  swimming lessons,  baseball clinics,  Vacation Bible School,  ear surgery,  trips up to Shriners in Boston, Shriners in Springfield, the Yale Adoption Clinic, St. Mary’s Hospital, Birth-3 a few times a week, music therapy sessions,  well visits with pediatrician, and the Smile Spot. When mixed well, sprinkle with construction:  Our little fence that was supposed to take 1 day (per my husband), dragged on for 3 long weeks.  The deck by the pool that was painstakingly replaced piece by piece meant that we couldn’t swim until around the 4th of July. 

Did I mention that I have 6 kids?  I was going to bed exhausted.  While my husband worked on projects around the house, I felt like a single mom.  This was not the fun summer that I had planned on, and time was ticking away. 

I needed a vacation from my staycation. 

We weren’t really planning on going away.  Could we really swing travel with 6 kids; with THREE two-year-olds?  Were we totally crazy to even consider such a thing? 

VACATION~NEEDED~ASAP.

36 hours before we left, I booked a week in OBX. Since it was a last minute timeshare rental, it was dirt cheap and worth every penny. We pulled the kids out of camp, canceled B-3, music therapy and medical appointments, and set up pet care. My husband finished the brakes on the car minutes before leaving. I instructed each child to pack 5 outfits, toothbrushes, and any electronics/loveys needed.  We threw the 3 pack-and-plays and a double stroller up on top of the car, a couple of suitcases, and we were off. 

The place was amazing.  It offered: three bedrooms and three bathrooms, room to run, indoor pool, outdoor pool, kiddie splash pad, trails, game room, activities, the beach.  A washer/dryer in the unit?  Oh my goodness perfect. This was just what we needed to regroup without distractions. 





After our week was completed, we packed up and drove down to the Florida beaches for week 2.  Yes—we got another dirt cheap timeshare rental.  This is the only way for our large family to travel since there is no way we can sneak into a hotel room unnoticed.  We are *slightly* noisy. There are tons of free and cheap activities in Florida, and we took advantage of everything local.  Mini golf? Check.  Feed the gators?  Check.  Walk up a lighthouse?  An exhausting check.  We saved money by cooking for the kids in the kitchens, and getting the occasional yummy takeout for adults. 


















After a quick stop in Savannah, GA (Candy Kitchen anyone?!?), we drove home all day and night.  We are back to medical appointments, weekly Boston trips for the clubfoot casting, speech, and I have to hustle to get ready for my next half marathon.  We have exactly 7 days until school starts and I have a list of day trips planned.  We are actually heading out to the light show at Lake Compounce in a minute.  I have yet to unpack my own backpack, but we are making memories—and that’s what counts. 


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Thursday, August 7, 2014

Mr. Handsome

While at the Shriners burn unit in Boston, I met the most lively little girl, nicknamed Mei Mei.  She has this tiny little body and a big beautiful voice that reminds me of a sister of mine when she was about her age. Mei Mei came home from China last year, and is an absolutely gorgeous and charming little lady.  While in China, a group of teens that were volunteering in her orphanage fell in love with her and started fundraising in order to help raise the money for her to receive the necessary therapies that she needed while in China as well as funds to provide care for her post-adoption. Red Thread Charities is an organization that helps facilitate care for children like Mei Mei, and they were awesome enough to help the teens fundraise...and to help Mei Mei find her forever family.  How amazing is this organization?!  It was through that organization that Mei Mei's mama and baba found her.

Now, Red Thread Charities is working hard to help out this little one. I will call him Mr. Handsome. 
Mr. Handsome is 7 and has lived in the Children's Welfare Institute since infancy. He has been diagnosed with KTS Syndrome, but it doesn't stop him one bit. He likes to exercise,  run, jump, use the hula hoop, skip, and dance. He likes to play puzzles with his best friend.  He is artistic: he enjoys drawing and origami.  Mr. Handsome is social, polite, and charms everyone that he meets. He has 2 best friends that he enjoys playing with and would do anything for.  

Mr. Handsome was not allowed to attend school prior to this year.  The orphanage director did not allow him outside or in the orphanage school because of his foot differences related to KTS Syndrome. The director was afraid of hurting Mr. Handsome's feet, but he states that he is not in any pain. Red Thread Charities representatives encouraged the director to reconsider,  and Mr. Handsome is now being educated in school!  He loves to help his teacher without being prompted.  He helps the younger children and helps to clean the classroom.  He enjoys writing and counting.  
His agency (CHSFS) is offering a $5000 grant to a qualified family. Additional grant funds may be available as well.
Is there room in your family for this smart young man? From what I have read I have no doubt that he would make a wonderful son and brother.  If you would like more information please contact me.
Check out his vimeo here.

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Tuesday, July 22, 2014

Who doesn't love a little ear? {Microtia Repair}


Right before surgery
I'll be honest--I kind of like his little ear. But...Christian has come to me a number of times asking if I can get him a new ear and a new hand.  He feels like is being teased by his peers. As a Mama Bear I wanted to head over to school and deal with this.  But the fact is that he will have to encounter with this for the rest of his life, and he will have to find strategies and support so that he is as sure of himself as possible.

We got him fitted for a hand and will pick up that baby next month. Easy peasy.

Getting casted for his.hand
But the ear?  Well, that is a bit more tricky.

There are very few surgeons in the United States that are considered experts in this field--under 10.  There are none that are local.  One local doctor said that he practiced the procedure in South America years ago, but he would not recommend that he perform the procedure.  I most certainly appreciate his honesty as one must be an artist at some level to create a new ear.  His friend in New York can do the rib graft procedure, but he does not take insurance and we will have to pay out of pocket.  Our insurance company MAY consider reimbursing us a portion of what they THINK the procedure should cost.  There are way too many variables with that scenario and I have no interest in dealing with our insurance company when it comes to reimbursement for such a large amount of money.  We consulted with another professional regarding a prosthetic ear, but after the second visit it was clear that he didn't know much more than I do about it.

I am no expert, but based on my research we have 4 options.

Microtia Repair Options Include:

Rib Graft:  A child should be at least 6 to consider this procedure. This will require at least 3 surgical procedures, the first being an incision between rib 6 and 9 to obtain some rib cartilage.  The rib cartilage will be shaped and suctioned to the skull.  The next 2 surgeries include lobule transposition and elevation.  If Christian was a candidate (he is not) a canalplasty would be followed for the atresia repair.

Medpor:  A Medpor can be done for a child as young as 3. With this procedure, a canalplasty can be completed prior to or after the Medpor procedure.  It is basically an implant that is placed on top of the scalp covered by living tissue. It does not require as many procedures and can be made to look almost exactly like the other ear.

Prosthetic:  A prosthetic ear typically involves two procedures in order to implant magnets that will hold the ear in place.  This is typically done for children ages 5 and up, and can be completed from start to finish in under a year.  The type of prosthetic ear that we consulted with a doctor about for Christian involved purchasing a new prosthetic every 2 years for the rest of his life.

Nothing.  A little ear is beautiful, and nothing actually has to be done.

None of these options improve hearing since we are just looking at a microtia repair.  We have yet to venture into the world of hearing aids as we are still trying to figure out if we should or should not. 

For insurance purposes, it is typically considered reconstruction rather than cosmetic, but there are only a small handful of professionals throughout the U.S. that are considered experts. Some offices don't either bother with insurance companies, and it is up to the family to pay out of pocket completely and hopefully be reimbursed a percentage of what the insurance company think the surgery should cost.  Our insurance company wasn't helpful.  The representatives that we spoke to said to look for specialists on their website, but the website does not give an area of specialty that is so specific. All we had was a list of ENTs to consider but none that listed that they actually had experience with such a procedure. 

With so many variables it can be difficult to figure out the right path. It actually took us years of discussion, medical consults, phone conferences, and connecting with our insurance company to figure out what path would work best for us.  For Christian.  

A fabulous resource for families that encounter microtia/atresia is The Ear Community.

In fact, we found a professional right on their website that recently worked on Christian's ear.  We chose the Rib Graft procedure and let me tell you--not even 2 weeks after surgery--his ear looks amazing.  The procedure itself was about 4 hours.  He was in pain for about 2 days, particularly in the rib area.  He stayed 1 night in the hospital and came home with a drain for 1 week and a headband with an ear protector to wear for about 3 weeks.   In about 6 months he will undergo the next procedure, where the ear is elevated and projected out.
1 day after surgery

Pet therapy.  No interest. 
A couple of nights after the procedure Christian wanted to see it.  I was concerned, since it didn't look healed and it is a process that is not yet complete--but he insisted.  He grabbed that mirror and beamed.  He beamed at his reflection in complete satisfaction.  It doesn't get any better than that.
2 days post-op

2 days post-op

6 days post-op


*Please note that again,  I am no expert and these are just my experiences as a parent relating to microtia repair.*



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Friday, June 27, 2014

Because strawberries are worth the effort

Some years strawberry season passes us by before we have the chance to go picking. 
This year we made it.
Twenty minutes and twenty dollars later,  we left with a box full of melt-in-your-mouth berries.
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