Tuesday, July 25, 2017

Mine is Pink

When I came to pick Tehilla up from school yesterday,  her teacher said to me, "Something is not right with her.  Her color looks off to me and she is low energy. I couldn't find her pulse ox to check her, but something isn't right."

I looked at Tehilla, who was pale and had swelling in her forehead (something that happens to her when her oxygen dips, her eye was pink and she looked unwell. She looked down at the floor and whispered,  "I took it (the pulse ox) out of my bag. It's at home."

Of course all the batteries of all 3 of our pulse oximeters were dead, but once we found replacements, we checked and her oxygen was at 80. Her baseline is 85-90. It's not critical but it's not good. Her heart rate was 101, which is perfect. She had no fever, so I made her an appointment with the on-call doctor. We lucked out and got our favorite, aside for our regular doctor.

We walked into the doctor's office and she was calmer than she usually is. She didn't want to talk to her.  I explained why we were there. The doctor took out her pulse ox and said, "Let's take a look how your oxygen is now. Can you give me your finger? Do you have one of these at home?"

Tehilla offered her finger, smiled and said, "My pulse ox is pink. Yours is black."

The doctor laughed and said, "You are so lucky that you have a pink one. I need to find a pink one."

She checked Tehilla thoroughly and found nothing except a double eye infection. Her oxygen was at 84. Drops were prescribed and we were told just to keep a look out. This has happened quite a few times- a dip in her oxygen as a response to an infection and/or pain.

She's doing better today, but a bit off still. We will keep her home today and see how she does.

Friday, July 21, 2017

Sammy Balofsky!

We are welcoming to the family our 7 week old golden retriever puppy, Sammy! Sammy will be Tzviel's dog but an important part of our family.

With all that our family has been through, it has taken a big toll on everyone in our family. Some TLC from a very sweet, affectionate dog will provide some stability and animal therapy for years and years. 

We have been working on this for over 6 months and have everything ready. Tzviel and I have been watching dog training videos. He has been practicing on Hunter, Mechal's cat, with no luck.

Speaking of which, yes- Hunter is staying, no- we aren't worried. We consulted our vet and Hunter is comfortable around dogs in our home.

We are very excited for this new transition. For the next bunch of weeks, we will be limiting the guests into our home, until some basic training has caught on.

Wish us luck and send Sammy some blog family love!

Sunday, July 16, 2017

Beach Bum Fridays

Summer is here and that means we take every opportunity for family time- especially on the beach.

Once again, given the opportunity to be in our happy place, the place to me that cultivates all our milestones of stability and calmness. We were so blessed to spend Friday on the beach. Tehilla frolicked, skipped, ran away, built sand castles, buried Ron in sand, laughed and enjoyed.

It was a perfect day. We were just another carefree family soaking up the sun and enjoying the beautiful turquoise water. I wandered into the water and was reminded of all the times I've been there at different stages of our journey. All the times I've whispered prayers into the sea breeze, washed my tears away with the water, or held my baby in heart failure. But this time, it was only joy. Only prayers of thanks.

The only thing notable was how well Tehilla did in the heat. While she still overheats quicker than most, overall she is definitely getting stronger and handled the heat better than ever.

We thank G-d for every opportunity to enjoy family time and count our blessings. Thank G-d.

Tuesday, July 4, 2017

Happy Heartiversary!!!

Dear Tehilla,

Yesterday on July 3rd marked your Heariversary, the anniversary of your most recent heart surgery. My Tehilla- my beautiful, strong, funny, remarkable, energetic Tehilla, I can't begin to explain to you what it means to be a year post-Fontan. You, my sweet darling, about who it was said would have poor quality of life, who had a 45% chance of making it over the age of 5, you who never shy away of throwing frightening complications into the mix- you have made it to a year post-Fontan.

There are whole days, my sweetheart, whole days that go by that I completely forget. There are days that go by that I don't worry. In fact, just the other day, your Abba and I were discussing if you even needed a medical shadow next year in public preschool, since you are so completely stable (please don't let the municipality or Bituach Leumi be reading this!). In the end, we will be requesting it, just as a safety net. But to think after all that you've been through, after all the miracles that have happened for you, that we would- that we could- feel this good about your health and stability...It's mind-blowing.

We spent the day today having ice cream with grandparents and splashing around in a little pool outside. We couldn't have asked for a more happy and peaceful day. We couldn't bless G-d more, for the amazing miracles and blessings that have come our way and the feeling of thanks for each and every day.

Tehilla, you are a song of Praise to G-d. Every skip in your step, every note of "Let it go" that you sing repeatedly, every pink item that you carefully curate in your wardrobe- everything about you makes up the great miraculous song of Praise to G-d.

Happy Heartiversary, sweet Tehilla.

Love,
Ima









Sunday, June 18, 2017

Threenager

Okay, okay, okay! I'm sorry I haven't updated in 15 days! Does it make it better if I say all is great? If I say that days went by that I forgot that we are a heart family with a kid with a critical CHD, are we good?

Because 2 weeks went by without illness,  without fear or without worry. Tehilla is doing so well that she has taken on a whole new persona...

She is a threenager. She is demanding, outspoken, extremely naughty and fabulous in every way. She causes constant trouble, picks fights and has us wrapped around her finger.

We have also noticed a new side of Tehilla that stunned us.  Ron and I were sitting outside one Shabbat morning, drinking coffee and chatting before shul. Tzviel was sitting between us while we sat on the half wall of our garden. 

Tehilla comes running up, grabs Tzviel's hands and in the sweetest voice says, "Come Tzviel! Come with me!  Come inside with me."

Listening to her angelic voice, he follows her inside. As he walks in, she turns around and runs back and sits in his spot with a devilish smile...

We were completely shocked!

And with that, I leave you to enjoy more calm and peace. Thank g-d!

Saturday, June 3, 2017

Cherry Picking Festival

A part of Shavuot was spent worrying about Tehilla's health as she once again developed a runny nose and a very bad cough.  The past few months have been cough after cough. While her oxygen levels have been great, she has been having a hard time handling the constant respiratory troubles.

So Friday was one of those times when we focused on living in the present and loving family time. We let our kids miss school and we headed out early to the Cherry Picking Festival in Gush Etzion.

We had a great time picnicking, getting cotton candy, exploring the booths set up, and picking cherries. Despite getting there early, we had a hard time finding cherries. We searched and searched and finally made our way to the complete end of the orchard where we were rewarded with plentiful trees.

We had a blast and enjoying eating the picked cherries on Shabbat. We again were given the chance to examine our blessings and appreciate time together as a family.

Tuesday, May 30, 2017

Happy Shavuot!

Thank g-d, Tehilla has been doing very well. Rambunctious and trying her luck at bending all of the rules.

Her latest obsession is Frozen and ballet. She keeps twirling and spinning and asking if she can go to ballet classes "to be a real ballerina."

Happy Shavuot to all of our blog family!