Tuesday, February 6, 2018

5 Weeks Worth of Updates

I apologize. I know you all love Tehilla dearly and love hearing about her updates. Gone are the days when I updated the blog daily, and even weekly. There has been a lot going on in our lives, not unrelated to Tehilla's Heart Journey, but a side-story, I guess you can call it. I'm preparing that update for all of you.

In the meantime, Tehilla is doing well. Very well. Not to jinx anything but she hasn't been sick for two weeks or so. Thank G-d.

She is going through a fabulous stage right now, where she is stomping her feet and insisting on creating a new sleeping arrangement every night in a different room or she somehow ends up in our bed. But you know- with one foot on my face, another foot in Ron's ribs. That kind of sleeping arrangement. She also NEEDED her room decorated with twinkle lights.

Now is the time of year, when parents are worriedly checking out different preschools and kindergarten programs. Tehilla's teacher asked to speak to me two weeks ago about Tehilla's progress. The teachers and assistants have all kept a close eye (sometimes too close and overly worried) on her and have been watching her progress. It seems Tehilla is behind in her development. This isn't unexpected, especially with all that she has gone through. We had assumed it was somewhere between a half a year and a year behind. The main teacher feels that Tehilla is a year behind in her social skills and fine motor skills.

I think the teacher expected me to be upset or put up a fight at the idea that my child might have some difficulties. I guess I haven't explained enough what we have been through. She has trouble coloring and cutting- no biggie! She needs a little assistance in drawing friends in- piece of cake! Ya see, she's kind of survived severe heart failure and other not so pleasant things. It changes your outlook as a parent. These things, we can overcome them.

The decision was made to hold her back a year, so that she remains with 4 year olds. The teacher has already been using her prominent role, to help us circumvent the municipality bureaucracy. We will also be putting her back in speech therapy and getting her occupational therapy.

Next update of our side story coming later this week...

Wednesday, December 20, 2017

Barely Treading Water

So...I'm going to take this moment to take the biggest deep breath. *Ahhhh* That felt better.

It has actually been a month of everyone being sick, around the clock. As soon as one kid feels better, another is running a fever or finding a perfect opportunity to throw up on one of us. And then that day that everyone felt just right- that was when Chanukah vacation started.

When filling amoxicillin for four of us and augmentin for the fifth, the pharmacist sympathetically smiled and said, "Tough start to winter, huh?"

I know, I know- count your blessings. And I do. I'm just so tired. So so tired.

After that scare that Tehilla gave us, she kept improving and her oxygen saturation stayed exactly where it was supposed to. But then she got a cough that got worse and worse and worse. We tried a lot of different things to help relieve the cough, but nothing seemed to help. After hearing some stryder in her cough, I gave her one of Tzviel's puffers which immediately stopped the coughing until the morning. Two puffs and it was gone again.

Then her ear started hurting again. We went to see our doctor, who agreed that the puffer was the right move and checked her thoroughly. Turns out it was pain caused from pressure in her ear canal from a new cold starting. Joy to the *enter expletive* world.

Needless to say, Chanukah was celebrated with joy all eight nights and spent with family and friends. Tehilla is feeling well enough to sing every Chanukah song she knows from school over and over. And over and over.

With all the complaining aside, we are very blessed to have spent this wonderful holiday together. Every holiday that goes by, I'm reminded of what a true miracle it is that we are together and celebrating as a family. These moments can't be taken for granted and they are treasures that we all hold onto dearly.

Monday, December 11, 2017

Settling in

We are settling in for a night at home. Tehilla is clearly not feeling well and seems off. She started the Augmentin right away. And went to bed at her usual bedtime.

She woke up a few hours later feeling very unwell and then very hungry for pasta. She let me check her oxygen levels. She was back up to 83-85, so we are very happy.

She has insisted on sleeping in our bed. We will see how tonight goes but things are looking good and should allow us to stay home and out of the ER.

Sunday, December 10, 2017

Desat Judgements

About the moment that I stepped off the plane from England, everyone in our family got sick.
Tehilla seemed to have a virus that got worse and worse. It finally developed into an ear infection, while the rest of us were diagnosed with strep infections. Five antibiotics handed out twice a day...feels a lot like winter.

Tehilla went back to school a few days later when she was symptom free. But the past few days she has been napping and a little lethargic. Today, I was called to school because she threw up.

While all the various teachers clucked around her offering their old wives tales as medicine, I studied Tehilla's face. She was purplish and looked unwell. I changed her clothes and pulled my pulse ox out of my purse. 73 and then 78. Not good.

I called our doctor who wanted us to rush to the ER. I didn't agree. Tehilla desats when in pain and this has happened repeatedly with ear infections. I wanted her to be seen but our doctor was leaving the office and the doctor on call is someone we don't like or rely on for medical advice. I don't want to go to the ER with all the nasty illnesses going around now and risk exposure to Tehilla.

I talked it out with our doctor who agreed it's probably that her antibiotics aren't working or it's progressed to pneumonia. He wrote a prescription for Augmentin and a referral to the ER. We are to start her on Augmentin right away and if we see any other signs or think she is heading downhill, we are to go to the ER.

We are so blessed to have a doctor who fully trusts our judgement and is willing to work with us.

Prayers that I'm right and we don't have to run to the ER tonight.

Sunday, December 3, 2017


They all were miracles. All 4 of her open heart surgeries were miracles. Each in their own right. But there was something very different about that 3rd surgery, if you will all remember.

For those that were part of the blog family three years ago- you know that it wasn't just that the odds were against us. It wasn't just that open heart surgery has a challenging success rate. It was that she wasn't meant to survive.

Those were the days when our doctors eyes were brimmed with tears. Those were the days when we heard the crappiest words you can hear, medically speaking: "out of options" "no chance of survival"...

And those were the days that we turned to you. We had absolutely nothing left we could do and nowhere to turn. And you embraced us in the warmest hug a family could ever give. You cracked the heavens open with your prayers. You filled charity boxes. You baked challah en mass.

So, yes, I made up a word. Miracleversary. It's a great word. Tomorrow marks the day that a complete miracle happened here. "Nes Gadol Haya Poh". Today marks the day that you all showed up when you were asked to. You all stood by our side and loved the heck out of us and our daughter.

I love you, blog family.

Friday, November 24, 2017

Manchester and Leeds

Wednesday night, I spoke in Manchester and Thursday in Leeds.

There is always one or two interactions that always stay with me. This time it was Chaya in Manchester and Shira in Leeds.

After speaking, Chaya came up to me and let me know that as a med student, how much my words meant to her, that our story would always stay with her and she would never abuse her power as a doctor, like Dr. Big Nose.

Then there was Shira who is studying to be a medical clown and loved hearing about our interactions with medical clowns and how bringing a smile to a family stuck in the hospital can give the perfect relief to a hard situation and actually help recovery.

I'm brought in to speak to students to share our family's journey and inspire them. But it's situations like these that actually bring hope to me. Thank you, Genesis, for the wonderful experiences and all the good that you do!

And now, blog family, it's time to go home and spend Shabbat snuggling with my family!

Wednesday, November 22, 2017

Nottingham and Bristol

I arrived in London on Sunday night. I've been flown in by a program called Genesis. They provide programming for university students in England.

Monday, I was sent to Nottingham, where I gave my first speech. Yesterday, I went to Bristol.

I speak about our family's journey and what we have gone through. I also talk a lot about you, blog family, and all that you have done to support us and help us through out heart journey.

It's unusual to spend so much time reflecting on our life but it only reminds me of how truly blessed we are.

Today, I will be speaking to two different groups in Manchester.