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!

Sunday, May 14, 2017

Let's Talk PTSD

I've been very candid on our family's journey with Hypoplastic Left Heart Syndrome.  Anything that is heart related and sometimes things that are not, I post on this blog. But there's an entirely other side to being a heart parent that I haven't been open about. That is the psychological aspect.

I'm a big believer in mental health awareness and I believe strongly that the taboo surrounding these mental illnesses are harmful and outdated.

It is important for me to talk about this side of our story- not just for the sake of being open and honest, but more importantly for the current and future heart families that read this blog. This part is too overlooked and needs to be known. I've had many heart parents open up to me about this part of their struggle and I want them all to know that they are not alone and how perfectly normal it is.

I'll explain by starting in the middle of it all. Last week, I was putting Tehilla to sleep. She has been particularly difficult at night times lately because she's at that frustrating stage where she can't decide if she needs her naps or not. So instead she refuses to sleep and has learned the skill set of procrastinating bedtime. I had sang our Shema bedtime songs and told her a made-up "Princess Tehilla" story and was lying down with her in bed.

She then asked me to sing her a song. A "Tehilla" Song. I told her that when she was a baby I used to rock her to sleep and sing her a Tehilla song. It's to the tune of Lullaby and Goodnight but the words are just "Tehilla" over and over again. It goes, "Tehilla Tehilla Tehililililila Tehilla Tehilla Tehililililila..." You get it. 

She asked me to sing it to her. So there we were sitting in her pink and polka-dotted room, on her pink blankets and I start to sing her the song. It was at the "Tehililililila" that my voice cracked and tears sprang to my eyes. I tried to blink them back and sing on, but instantly my mind took me back to the times when Tehilla was just an infant. I would rock my very purplish baby to sleep and wonder if she would make it through the night. I would softly cry while singing her this song, my heart praying and begging G-d for another day with my baby girl. 

I sang this song to her after surgeries, trying to soothe her pain and discomfort and again, softly crying and begging G-d for her health. 

I hadn't sang that song in two years and in that one instant, last week, I felt the complete weight of the stress and anxiety that we endured daily during her first 14 months of life hit me and I just desolved into uncontrollable sobs. 

The heart parents reading this are nodding their heads in agreement and I have now triggered their own PTSD.

These episodes of post traumatic stress disorder don't happen frequently anymore.

I used to love to cook and at one point had even enrolled in culinary school to become a pastry chef but changed my mind and became a graphic designer. The harder and more complicated the recipe, the more I relished in accomplishing it. But quickly after we brought Tehilla home for the first time, did I bitterly begin to despise cooking. It would be the time daily, when my hands and eyes would be busy, but my mind would begin to wander.

And wander it did. I thought about how much longer we had with Tehilla, if we would get a chance to celebrate a birthday with her, how we would cope without her, and how we would help our other two kids cope without her. Cooking quickly became anxiety attacks that I would blame on cut onions. Doesn't everyone have anxiety attacks from cutting onions? Our menus immediately changed to whatever I could cook within 10 min and that helped me avoid quiet time to think.

It's definitely a very positive sign for me personally that I no longer have anxiety attacks when cooking and I have begun to start cooking gourmet food again.

It's important for me to explain that I have PTSD and have been living with it since Tehilla's pregnancy. I am most definitely in a much better place right now, but every now and then something triggers it. You'd be hard pressed to find a heart family that doesn't suffer from PTSD.

This journey has changed every person in my family. I've put my family in the spotlight enough so I will give my kids the courtesy of not explaining in depth how this journey has harmed them. You can imagine what the instability of us running constantly to the ER or doctor without a moment's notice, sometimes in middle of the night, would do to two small children. None of us are the same as we were before.

We have learned to live in the moment and be extraordinarily appreciative for every blessed day that we have with each other. We live life to the fullest and are more outspoken. We have found parts of our personalities that we didn't know existed.

Our lives have changed for the better since we had Tehilla. She has taught us how to fully live. It just hasn't come without a hefty price for all of us.

Wednesday, May 10, 2017

Extremely Well

Tehilla gave Dr. Golander the silent treatment but at least she wasn't screaming and crying.

Her heart is doing extremely well and we will continue on with the exact same medications and dosages.

The pressures in her heart are still a little too high to close the fenestration (hole left for the bloods to mix). So we will just watch and wait.

Her blood pressure was fantastic which for her is a HUGE win! Her heart rate is great and so is her saturation!

A great appointment! We come back in 6 months.

Cardiology Appointment Today

Because of our trip to the US, Tehilla's cardiology appointment checkup was postponed. She is stable enough for this not to be a problem.

Driving to the hospital is practically a reflex at this point. No attention is needed for directions. It's second nature. To be honest, it means my head is flooded with thoughts and worries.

These appointments are so important but also bring with them an anxiety. The what-ifs take hold and I find myself whispering Psalms while driving.

I'm not the only one combating anxiety this morning. Tehilla heard she was going to the hospital for an appointment and her eyes went wide and she screeched "NO!".

So we have now had several conversations about this being a "friendly appointment" and not a scary one. They will only put funny feeling gel on her chest and take pictures of the inside of her heart to keep her healthy.

She panicked before her vitals were taken but calmed down for a nice blood pressure reading. She hopped off the chair and said, "That was friendly!"

Now we are waiting for our appointment. I reduced MY anxiety by not taking care of the insurance paperwork which without fail always gets messed up and sets us back by hours. I paid privately and will just apply for the refund. If this works out nicely, then this might become my new system.

Sunday, April 30, 2017

Ear Infection and Cough

Before I get to the obvious content of this post- take a look at the dress Tehilla wore today. When I came to pick Tehilla up from school, her teacher asked me why I did not send her in white and blue as had been requested for the school Yom Ha'atzmaut (Israeli Independence Day) today. I said, "There is white and blue on her dress..." Her teacher said, "Come on...you know what I mean..."

I said, "Betty, I know what you mean but you don't understand what I mean. I mean that was all the blue and white you were going to get Tehilla to agree to. And that means it comes with a healthy helping of pink too. She wouldn't hear of anything else, and this was not the battle I was fighting this morning."

When I picked Tehilla up from school, her color looked off and she felt warm. When I checked her temperature it was just a few decimal points away from a fever and I was not willing to wait to get stuck without a doctor over Yom Ha'atzmaut.

So we saw the doctor on call tonight who immediately saw that Tehilla has a very bad ear infection and could hear her cough and associated it with a post nasal drip. Because she has been taking antibiotics about every two weeks,  he prescribed her a very strong medication to hopefully get rid of these bacteria that seem to be lingering.

Let's hope it helps and she can stay healthy. 

Saturday, April 29, 2017

Spring/Summer Begins

Spring, but more like summer, has started in full blast. With the heat comes our new experience of watching how Tehilla's well adjusted post- Fontan heart handles the heat. I can already see a noticeable improvement in handling the heat. While she still gets sweaty fast it is not to the degree it was. This shows on a very basic level the improvement of her heart function.

Tehilla was Ima shel Shabbat! And from 6:00am until we got her to school that was all she talked about.  She loved every second of it and insisted that we call her Ima all weekend long.

Her cough came back on Thursday. I started doing some DIY home improvements and caused a lot of dust in the air. I'm hoping that's what caused it and not that the cough we just got rid of 2 weeks ago has come back. If it is not gone in another day or two or fever starts, then we will go back to the doctor.

Other than that, everyone is doing well.

Enjoy the pictures!

Sunday, April 23, 2017

The Rest of Pesach

The rest of Pesach was very nice and filled with a lot of family time and some fun outings. Within 2-3 days of Tehilla taking the antibiotics, her cough completely went away and she was back to her normal self.

We spent a day at the park and playing locally and on the Friday, we took the kids to a strawberry farm in Hod Hasharon. It was an incredible experience for all of us. We paid an entrance fee and were given 3 cartons for filling up with strawberries, as well as the ability to eat as many strawberries as we wanted while walking around.

The kids ate more than their weight's worth in strawberries and had the greatest time tasting from the 3 different strains of strawberries. We also picked flowers in the flower gardens and Tehilla did everything she could to get one of every colors. Then she realized that she loved pink too much and should have only picked pink flowers.

It was a wonderful experience and we will definitely be going back in the future. Just watching our 3 kids, in the sun, searching for that perfect strawberry, while hopping around through the strawberry plantings- it gave us great joy and we felt completely blessed, once again, to have the ability to enjoy these moments.

Here are some of the photos. Enjoy!







Thursday, April 13, 2017

Medicated

Pesach seder night was incredible fun that was mixed with a still feverish Tehilla and persistent coughing. We were up throughout the night with her coughing and when her fever returned in the morning, we started Tehilla on antibiotics.

Within 24 hours, her fevers finally stopped and she overall looks less sick. Her coughing fits are still happening frequently.

She was well enough this morning to go to one of her favorite places- the zoo! She had a great time and enjoyed every minute of it. She fell asleep on the way home and napped a very long time.

It seems that Tehilla is on the mend with the antibiotics. Thank g-d.

Monday, April 10, 2017

Pesach Ahoy

Tehilla has not improved and gave us a very rough night.  She still has fever today, so tomorrow unless things change we are treating this like pneumonia.

She is well enough for us to stick to our Pesach plans and enjoy seder in Bet Shemesh.

During one of her inhalations,  I brought up her birthday party in October in an effort to distract her...it resulted in 12 hours of non-stop talk of pink princesses and pink castle cakes. Now, all she keeps talking about is going to her cousins.

So Pesach ahoy! Wishing our entire blog family a happy and enjoyable holiday! 

Sunday, April 9, 2017

Wait and See

Tehilla had a blood count done this morning which came back fairly normal. The doctor decided against a chest x-ray because Tehilla has had a crazy amount of x-rays in the course of all of her treatment.

But we were told to start antibiotics if her fever isn't gone in 2 days or if she becomes lethargic.

Right now she goes between not doing well and tons of energy. So fingers crossed...

Saturday, April 8, 2017

Pesach Prep

With our home all ready for Pesach and our plans all set, our family in town and everything ready to go, what could possibly go wrong? What would we have to worry about? It seems like life would possibly be boring...

No worries. Tehilla thought of a great way to keep us busy around the clock. Thursday evening she started with a slight cough that very quickly turned into a viral upper respiratory infection. She also hurt her eye when something flew into it and she rubbed it incessantly. So Friday morning we were at our doctor. She received drops for her eye and she was checked thoroughly because of her cough. But it was nothing more than a cough. 

All of Shabbat her cough got worse and she developed a fever. I started her on Mucolit and saline inhalation to loosen the mucus she was choking on. I monitored her oxygen saturation which was 82-91 (amazing for her!). She seemed to improve. 

Our doctor made a house call tonight to check on her. Her chest sounds clear and her oxygen levels are great. He is concerned because she has had coughs off and on for over a month. He is sending us for a blood test in the morning and then depending on the results, a chest x-ray as well to rule out pneumonia. 

So...we are keeping it busy around here. Here is a picture from Tehilla's school Pesach party. 

 

Thursday, March 30, 2017

Home

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

Purim

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.

Monday, February 20, 2017

Tehilla Post


"Yeah, you've been posting- but how is TEHILLA? You haven't posted about her in awhile!"

Oops.

Let's see...how is this little ball of energy with a side helping of mischief and sweetness? She's perfectly age appropriate. Her blonde hair is coming in a bit more and is doing this hereditary thing that I had hoped she wouldn't get- broccoli hair. It's hair that has the thickness and frizziness to stand on end. All the girls in our family have learned to deal with it and she is too. But she is too busy giggling every time we tell her that she has broccoli hair.

She had a growth spurt and is still a little pixie but a slightly taller pixie. Overall, she is just maturing and blossoming into a little girl and less baby-like.

About the moment that I posted that Tehilla's speech evaluation was counter-productive and got us high-tailed out of the special education language schools- right around that time, something in Tehilla's speech went full speed ahead. I can't explain it. Maybe it's some more of that blog family magic juice (prayers), but her speech suddenly jumped in ability and the problem areas that I was seeing from her apraxia of speech are now barely audible. She will be restarting speech therapy in a week with someone new and in Hebrew.

I have been scheming to record Tehilla during bedtime. So far it has been unsuccessful, but she has started singing Shema and the rest of the songs along with me. Listening to her little high pitch voice singing and saying prayers has brought tears to my eyes. Believe me, I am trying to get a recording, but she has caught me every time.

The best way that I can describe how Tehilla is heart wise is to tell you what happened today when I picked her up from school:

Tehilla saw me and jumped into my arms and I started asking her how her day was. While I was talking to her, her teacher mentioned to me that her finger tips were very purple. I explained that Tehilla was just cold and that she must have just been playing outside. Her teacher nodded and we were talking about Tehilla's well-being and where we were sending her to school next year. Another mother who has no knowledge of Tehilla's health issues, overheard a piece of the conversation and inserted, "You really don't need to worry at this age about issues and how they adjust and if there are issues..."

I smiled at the woman and said, "Some issues are worrisome. Tehilla has half a heart." I then relished in watching her smile fade and her mouth drop open as she for the first time noticed Tehilla's fading scar. "What?!? I had no idea. I'm so sorry. But I saw her dancing at the Chanukah party and she looks so...so...so..."

I cut her off: "Normal? Amazing?"

Her teacher said: "Perfect. Just perfect."