First Day of School

Ron and I are too happy for the first day of school. We have the stupidist smiles on our faces.

Tehilla started Kindergarten today! In a regular school! We don't have her medical shadow in place yet, and we aren't worried at all. Because she is entitled to it, we will get her a shadow, but the woman will be bored and helping the teachers with regular school stuff.

We were the first ones to arrive at school which gave me time to explain to one of the teachers about her heart. I explained that they had to watch that she doesn't dehydrate and that she can tire easily. To look for purple lips or nails or if anything looks off. And that a fall can make her bruise more severely. That she is totally fine and normal and needs to be treated as such.

I also prepared laminated cards for emergencies. It has all the details that a paramedic would need, with all her information and to take her to Hadassah Ein Kerem Hospital. One card remains in her backpack and the school has two to keep on the fridge and near the phone. May they be the biggest waste of time.

Tehilla was a bit nervous but immediately warmed up and jumped right in to coloring and exploring her school. She has a few friends from her previous school, which made her very happy. She is crazy happy with her Frozen backpack, Frozen lunchbox and Frozen water bottle. We also found Frozen school shoes, so she is happier than happy.

September 1, thank G-d!

No Limits

Hi Blog Family,

It's been some time since I really sat down to rifle through my thoughts and get them out on virtual paper. To be honest, this summer has had me struggling to keep my head above water, just in scheduling and trips with the kids and the hellish last weeks of August. This is a post I've been meaning to write for almost 2 weeks...

About two weeks ago, we took the kids to see an ice skating and acrobatics show. We were astounded by the skills, the stunts, and the pyrotechnics. The kids were blown away and couldn't stop talking about it. 

Tehilla was especially taken in by the aerial acrobatics! It truly was amazing. Mid show, she turns to me and says, "I want to do that, Mama. I can learn to do that?"

My initial response was a snicker and a "Yeah, right", as I envisioned our little heart warrior princess flying through the air, suspended by fabric, soaring above ice...

But then I looked into her big greenish blue eyes and watched her micro-expressions of awe and delight, the reflections of the colored lights dancing on her face and her lips curved into a smile of pure joy. And I said, "Yes. Yes you can. You can do anything and be anybody. Nothing can hold you back."

This little interaction really explains where my headspace has been. I spent so long fighting for her life. So much time spent on worry and fear. Now that we have reached this period of calm and stability, my job has changed to fighting for her to live life. 

The days of worry and fear are not behind us. We know that the future will bring many more periods of unrest and medical challenges. We aren't fooling ourselves. But while we have peace and calm, we will make sure that Tehilla has every opportunity to live her life to the fullest and with no limits. I'm not saying we are enrolling her in aerial acrobatics at age nearly four (wow!). But I'm saying we won't be holding her back. That little princess will be allowed to follow wherever her perfect half a heart leads her. 

Too Much Puppy Love

We were perfectly prepared for Sammy, the puppy.

Collars and name tags- check.
Leashes and dog crate- check.
Dog toys and water bowls- check.
Check if your 3.5 your old is a raving jealous overly excited madwoman who picks puppies up by the face...oops. Missed that one.

So Sammy settled in nicely but Tehilla got a serious case of "new baby/jealous sibling syndrome" and we have been scrambling ever since to help her adjust and give her attention and teach her not to smash puppies skulls. It's been fun. (That was the sound of my eyes rolling).

We have Sammy nearly housetrained and sharing a peaceful existence with Hunter the cat. She has learned come, sit, down, let go, look at me, dance, paw, and is making a lot of progress with stay, and leave it. She is sweet and affectionate, smart and playful and has been an amazing new addition to our family.

But hardly an hour goes by without someone screaming , "Tehilla! Don't pick the puppy up by her ear!" Or "Stop squashing the puppy!" We are making progress and teaching her how to properly handle the puppy. We will get her adjusted with time...

Tehilla has been put on an antihistamine because we think she has allergies and has had a dripping nose for over 6 months without any relief. So far there is improvement.

Otherwise everyone is surviving the summer and providing the perfect amount of crazy for us to be counting down the days until school starts.

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.

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!

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.

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