Thursday, March 30, 2017


Oh it is so nice to be home. No- we were not given our stroller right at the gate- but the reason is because all strollers are given about a 2 min walk from the gate.  I was okay with that. The flight attendants started arguing on our behalf but I told them it was okay. 

For all future trips, I will find out about requesting special accommodations far in advance and not allow that to happen again.  By then, of course, Tehilla might be able to walk further distances.

Tehilla fell asleep the second she lay down in her bed.  Ah, home. We had the most wonderful trip but it's so good to be home...

Special Accommodations

I know that once we land, I'll be too exhausted to update,  so I'm writing this post now on the plane.

On our way to the US, our stroller was checked at the gate and was not returned to us in Paris for our connection. We didn't get it at the gate when we landed at Newark. Instead, we got it at baggage claim. We were told this would happen and I explained to the personnel that my daughter had a heart condition and couldn't walk more than 5-7 min and I needed my stroller.

My concerns were brushed off and I was told that the airport in Paris would have carts with seats. Yes- well that was after changing terminals and going through security.  I was forced to carry Tehilla for over an hour.

On the way back, our stroller was actually returned to us in Paris at the gate. So when boarding our connecting flight to Israel, they were going to check the stroller and again not return it until baggage claim.

I was insistent about Tehilla's heart condition and that I must receive it at the gate. At first they tried to brush me off, but I was adamant. So, they made a special accommodation and have been updating me on the flight in hopes that we will receive the stroller at the gate. I don't know how someone with an infant would manage but I can't carry Tehilla through the entire airport.

Let's hope that this worked. 

Take Off

Cudos to the genius who thought it was a great idea for 3 kids to kit be sitting with a parent and all of us to be scattered on the plane. A few nice people switched seats with us and we are all close enough and Tehilla is next to me. I should have let the woman who was adamant about sitting next to the window just take care of Tehilla on her own. A lot of passengers gave her shameful looks.

Off we go!

Wednesday, March 29, 2017

But Of Course

So here we were on vacation, jam packing our days with meeting up with as much family and friends as possible, while seeing the sights and going to the Museum of Natural History. Everything seemed fine. Yesterday after an outing and getting Baskin Robins, Tehilla fell asleep in the car on the way home. 

She woke up a few hours later and skipped quite happily over to me and said, "I have a headache and my head is hot." She had a fever of 38. And we are flying back soon.

Adrenaline rush, some quick help from my friend and a call to the travel insurance and we were on our way to a walk-in clinic. 

It was an unusual experience taking a child like Tehilla to a random doctor. But the doctor was very good and found the culprit illness. She took one look in Tehilla's ear and immediately saw that it was severely infected.  The doctor said, "I guess given her medical history, she has a very high pain threshold because she should be inconsolable with that kind of infection but she seems to be very good natured."

She started antibiotics and is taking Tylenol. I had with me on the trip Otidin ear drops (anesthetic ear drops) just in case, so she is getting those too. 

It didn't stop us from heading to the mall today and treating the kids to Cinnabon. Tehilla took her first bite and said, "Oh, yummy. I love this. We can have this for a treat on Shabbat?" 

Tomorrow, we fly out. This trip went by so quickly and we are all sad to be leaving.  The solo parenting part was challenging but every minute was worth it to be able to spend this time with our family. 

Friday, March 24, 2017

Family Time

We have been so lucky to spend the past 2 days having some quality family time. Here is Tehilla with Great-Grandma. I can't believe what a big blessing it is to see the two of them together. Thank G-d.

Thursday, March 23, 2017

Our NY Adventures

Today we woke up in my favorite place in the world, my grandma's home. I spent so much of my childhood in this house and it brings back tons of happy wonderful memories for me. My kids are loving seeing all the family photos and spending all this time with their great-grandmother.

The main reason for our visit was to see my grandmother and as a surprise, she sent us all to New York City to see the Lion King on Broadway! It was absolutely incredible and each kid was completely blown away.

Tehilla sat next to me and kept whispering about the lions, then when I would respond she would shush me. She had her mouth open in amazement at a certain point and I was hit by so many  emotions watching her.

Here she is 9 months after heart surgery- more stable than she has ever been. So stable in fact, that we were able to go on this trip. It is not something that I was sure we would ever be able to do. And there she was, at a Broadway musical having- literally- the time of her life.

We are so blessed. So extremely blessed. Today's adventure felt like a victory and I had to share it with you, blog family.

Wednesday, March 22, 2017

Safely Arrived

We have arrived, all safe and sound. My sanity level has dropped a few notches, but nothing a lot of sleep and shopping can't handle.

The flight had its tough points, like when Tehilla was awoken by the food cart smashing her foot and then she cried for 30 min straight.

But we made it, bags and all.  We have already received a large dose of love. The kids fell asleep within 5 minutes.  And I'm going to do the same. 

More tomorrow!

Flight to Newark

The good people at Delta took one look at us and preboarded us first. And about 2 minutes after finding our seats, Tehilla fell fast asleep. Thank g-d.

Settling in for a better second flight.  Newark, here we come!

Tuesday, March 21, 2017

Counting Down the Hours

I have to say that I've never seen a more incredible airport as the Paris airport. It is a beautifully designed airport both in structure and space. But on top of that, they have so many play and media areas that we have hopped from one to another to pass the past 6 hours.

I'm hopeful that the kids will crash on our next flight. For now, Tehilla is playing and watching and Mechal and Tzviel are playing video games.

Just 3 more hours...

Stop Over in Paris

Well, we made it. It was interesting (read challenging). All the kids slept some of the time and it went without incident.

We are now on our 9 hour stop over in Paris. G-d bless the person (I'm thinking it was a parent) who thought of putting a game center in middle of the terminal surrounded by comfy chairs. "Sure, guys, you can play awhile. I'll just sit."

We are now hanging out. We nearly got our applesauce confiscated as it is something new to French authorities. Tehilla shouted at the officer, "Hey! Give that back! That's my applesauce." Thankfully he laughed and returned it.

Away We Go!

Away we go!

Sunday, March 19, 2017


This past week we celebrated Purim! My kids think all year long about their costumes and start preparing them months in advance. Tehilla was no exception. Tehilla went to the playroom, pulled a Disney Princess book off the shelf, opened it to the title page and pointed to Sleeping Beauty. "Ima, I want to be the pink princess. I dress up pink princess."

We had a wonderful holiday. We had a party with friends, saw some family, got to visit sick kids in the hospital and loved every minute of Purim. Tehilla is still too young to sit through megilla reading and handle the loud noises, but that didn't stop her from running around constantly with a noise maker. She also personally prepared and gave mishloach manot (present of food) to her best friend, Itai. 

Tehilla has already gotten back out a Disney Princess book and opened it to the title page to show me which princess she wants to be next year.

This Monday night, I am flying to the US with all 3 kids. We are going to visit family for 9 days. Part of the reason I haven't blogged as much is that I've been making all the preparations.

Friday morning, our traveller's health insurance finally came through. You can imagine the challenge to be approved with Tehilla's heart condition. But thank gd, everything went through and we are almost all set. This will be Tehilla's first time being more than an hour away from her hospital but now she will be in an entirely different continent. We will be very close to CHOP should there be any problems.

Tehilla has also started working with her new speech therapist. Thankfully, she has taken to her and I got to hear Tehilla speaking Hebrew! She never speaks to me in Hebrew, so it was a first for me. The speech therapist is working with Tehilla on her apraxia in Hebrew and just like last time, Tehilla is quickly showing improvement.

More blog posts once we leave for our trip!

Sunday, March 12, 2017

Giving Back

Purim in our household is a year long event. We plan for next Purim the minute that it ends and brainstorm together ideas to create the costumes we come up with. We order months in advance the supplies and think of creative solutions.  

Last week Tzviel and I were talking about Purim. This was a part of the conversation:

Tzviel: I love Purim. It's a holiday that is so much fun. But it is also a little sad.

Me: Sad? Which part of it is sad?

Tzviel: Well we get dressed up, have a party, give out candy and get candy...It's so much fun.

Me: Yeah? So why is it sad?

Tzviel: There are kids stuck in the hospital who can't do any of that. They can't get dressed up or have parties. It's so sad for them.

Me: You're right. You are so right. We were one of those families for many holidays stuck in the hospital. It is sad.

Tzviel: Can we do something for them? Can we make them happy.

Me: Absolutely. I love that you thought of this and yes, we will definitely do that.

I couldn't be more proud of Tzviel. And how could we not give back? You can't imagine the feeling of being stuck in a hospital over holidays, while the world carries on and celebrates. When people visit in the hospital it breaks up the monotony of hospital life. It brings smiles to very worn and sad faces. 

So we planned for today to give back. The kids were so excited and picked balloons, candy, and noisemakers to give out. We all got dressed in costumes and went from floor to floor bringing happiness to patients, families, and staff. It was a special experience and our kids gained so much out of it. They asked that we make this a new family custom and we will definitely be doing that. 

We are blessed to be in the position this year to be the givers and not the receivers. We are blessed to have kids with kind souls. More Purim posts will come tomorrow. 

Saturday, March 4, 2017

A Week Full

Thank G-d, we've been busy with a lot and there hasn't been time to blog.

It's Purim season here and that means the kids come home from school with costumes every few days. Tehilla is loving it. She was dressed up as King Achashverosh and found it hilarious to walk around saying, "I'm a king. Poof! You a queen." She couldn't pronounce Achashverosh, so she says " King Ashashosh".

Tehilla caught a terrible viral cough that came on strong the second it started. We started her quickly on mucolit (to break up the mucus) and saline inhalation to help her breathing. I can't explain how miraculous it feels to see a kid who in the past would have been hospitalized and on oxygen, just improve and recover. Watching her body handle this was amazing. And look how pink she is! It's nothing short of a miracle!

Tehilla had an evaluation at Hitpatchut Hayeled (Child Development Center) called an "ivchun shiluv". It's a special assessment where a number of specialists evaluate her at the same time. This center is such a wonderful place full of positive professionals who really know how to work with children and are a joy to work with. 

Tehilla was evaluated by a pediatrician, a speech therapist and a physical therapist.  They were so enthralled by the seemingly healthy child with the longest medical file they have ever seen. They adored Tehilla and were so accommodating so Tehilla wouldn't be fearful. They helped her adjust in all the right ways and really asked fir my input and ideas. 

They believe that gan safa (speech development preschool) would be the wrong fit for Tehilla because the kids going there have very different speech issues and it would be a mismatch for Tehilla's ability. But they believe that there may be alternative programs that the city can offer her and they want me to request a "vaadah" (a meeting) with the education council of the municipality. They also want her to do speech therapy and see how much it helps.  

I have mentioned that Ron and I felt like there was something not quite right when it came to her ability to do physical things. We couldn't quite explain what it was we were seeing. I mentioned it to them and they picked up on it. 

They found that Tehilla has hypotonia- low muscle tone. She will start physical therapy to help her. This is no great surprise as it is commonly connected to apraxia of speech and to kids that have been hospitalized a lot. I'm relieved that they found it. 

Tehilla is all better and doing well otherwise. Thank g-d.