Smiling Miracle

There really is no better remedy for a hard day, than looking at a miracle smiling back at you! Thank G-d!

Evaluation

Tehilla had her evaluation from Hitpatchut Hayeled (Child Development Center) on Monday. She was assessed by her physical therapist, a speech therapist and a pediatrician. Tehilla was in a very cooperative and happy mood.

The physical therapist was thrilled with Tehilla's progress. She found Tehilla completely on track for her age in terms of her motor abilities and skills.

We discussed the struggle that Tehilla has when walking after a few minutes and her heavy breathing.  The physical therapist explained that this is Tehilla's disability. While her progress is great, her body can only do what her heart allows her to do.  There is nothing that they can do to help her with this.

The speech therapist did not speak English. She had me give directions or commands to Tehilla and watched how Tehilla responded. She found Tehilla to be advanced cognitively and developmentally.

She was impressed by Tehilla's speech and really could not see significant signs of Apraxia.  She felt that Tehilla's speech therapy sessions were such an early intervention that they helped her tremendously to the point that she does not believe Tehilla will continue to significantly struggle with her speech development.

The pediatrician observed the therapists testing Tehilla and then gave Tehilla a quick physical. Tehilla giggled while her reflexes were checked and cooperated completely.

Their findings were that she does not need a specialized daycare for speech development nor any medical specialized program. They were very excited that Tehilla was granted a medical shadow. They believe the best structure for Tehilla is to be fully integrated in a regular nursery but believe strongly that a medical shadow is necessary to keep an eye on Tehilla if she struggles physically.

Honestly, we couldn't have hoped for a better outcome. I have slight reservations about the speech therapist's assessment, only because she was testing in a language she couldn't speak. Regardless, Tehilla will continue with speech therapy which will only continue to help her.

Granted and Evaluation Tomorrow

We finally received our papers from Bituach Leumi (National Social Services). We are extremely happy with the outcome. We were granted everything that we asked for- in particular two items that I mentioned on the blog.

We were granted handicap parking. Tehilla is now able to walk, run and climb, but her limitations have become very apparent. She becomes out of breath very easily and can't walk too long. Right now, she is a little 24 lb monkey, but G-d willing, she will keep growing and we can't hold her or force her to stay in a stroller. This was something that was very important to us.

Tehilla was also granted a medical shadow for daycare! Tehilla had been rejected (still stings a bit) from a few private gans (nurseries). Now with her own medical shadow, I can put her in a municipality run day care system, and know that she will have one-on-one care. It's a huge relief.

Now we will begin the processes of making these things come into affect.

Tomorrow, Tehilla is going for a thorough multifaceted evaluation at Hitpatchut Hayeled (Child Development Services). We booked this appointment a long time ago. While Tehilla's speech has progressed and she is now saying phrases and 4-5 word sentences, she very clearly still has Apraxia of Speech. She still struggles to organize her sounds and words, is inconsistent with her words and completely avoids certain sounds all together.

Her evaluation will be assessed by a speech therapist, a physical therapist, a pediatrician and possibly other therapists simultaneously. The purpose of the evaluation is to assess Tehilla's difficulties and see what services can best help her. In specific, because of her speech problem, she should be entitled to Gan Safah (Language Preschool Group). It is a specialized extraordinary program to help with speech development at preschool.

Because Tehilla speaks no Hebrew, this evaluation might be bumpy but we have our fingers crossed that they will still be able to accurately evaluate her. I will update the blog tomorrow.

How to Scare a Heart Mom

This story starts at 4:25 am, this morning. Early, no? Well, Tehilla didn't think so. She woke up and started crying. Between sobs she screamed, "Me up. Me up!!! Me no nap! Mama! Abba! Up!" Sigh.

So I picked her up and after she insisted on her "Banket (blanket)! Pink. Lellow. Soft banket!" I brought her to our room. She lied down and said, "Barney!". Fine. I put Barney on for her on my phone and passed it to her. A few minutes later, I felt the ever so gentle slam of my phone hitting my eye socket. "No Barney! Pig! Pig! Pig!" I said, "Do you want to watch Peppa Pig?" She giggled and said yes. Apparently she also had a preference as to which episode of Peppa Pig and about 5 minutes later she had to watch Elmo. Not just any Elmo- the ball episode! This continued until 6:00 am at which point, everyone in the family has to get up to start getting ready for school and work.

Tehilla spent the rest of her morning helping me straighten up and then playing. At around 10:30 am, Tehilla's stomach was hurting her. I picked her up and rubbed her back and tummy. She wanted to be put down and to sit on the couch in the playroom. So I put her down and she calmed down a bit. I then went back to working.

About 10 minutes later, while absorbed in my work, I realized that it was too quiet and that I hadn't heard any noise at all from the playroom. I jumped up and ran into the playroom.

My heart completely stopped and the air became thick, as I saw Tehilla lying face first LOOKING lifeless. I ran over to her and turned her over. Her color was fine, she was no more purple than usual. Then I noticed that she was breathing. Steadily and completely fine. Her pulse was good.

That was when it dawned on me that she was sleeping. Very deeply. She had been so overtired, that she had just keeled over, face first and fell asleep.

Whew! Just Tehilla, being a regular overtired two year old.

Hanukkah is Over

The last night of Hanukkah was last night. We enjoyed every minute of the holiday. The kids and I went on outings, did crafts, had lazy days in our pajamas, and ate a fair share of sufganiyot (donuts). Thank G-d, all is well in our heart home.

Enjoy some pictures!

Miracles

Tonight is the third night of Hanukkah. I absolutely love this time of year. Here in Israel, the streets are decorated with lights, around every corner is a store selling sufganiyot (donuts filled with all kinds of cream fillings), and at nightfall, there are chanukiahs (menorahs) burning in every window. The weather is cool and fresh. Everyone is wearing boots and sweaters and joined by their family and friends to celebrate.

This festive feeling is palpable. There is a magical feeling in the air. It's that magical feeling that really draws me in. Tonight, after eating dinner, I had some time to really reflect on this magical feeling and analyze it in a personal way.

I think this magical feeling is really a feeling of the possibility for miracles. Hanukkah is a holiday where we celebrate the miracle of that little jar of oil lasting eight nights, instead of one. Of a war that was fought and won by the small army. It's a time where no matter the insurmountable odds, there is a possibility that we will be victorious. 

Last year our holiday was extraordinarily enhanced. Tehilla had her third heart surgery a few weeks before Hanukkah. Tehilla had desperately needed surgery, but because of very small pulmonary arteries, she was not expected to make it. We were left with no choice but to hand her over to our phenomenal team of doctors. We shared our story with all of you and begged for the only thing that we could do for our daughter: prayer.

When we walk around our hospital, we often meet various members of the cardiac department, all who know Tehilla's story. They all sat together in their weekly board meetings with grim faces, trying to challenge their genius minds to find a better solution- a fail proof solution to help Tehilla. But in the end, they all came up empty handed. So, when we walk the halls of our hospital, they all recognize Tehilla. Their faces light up, and they make a point of coming to say hello. The most secular of doctors have turned to me and said, "She is a complete miracle. Just a beautiful little miracle."

You may be sick of hearing this (too bad), but as I've repeated many times: 1 in every 100 babies is born with a congenital heart defect. It's a terrible statistic. About 25% of those babies do not survive over the age of one. It is a nauseating statistic. Just plain awful.

There is a bond between heart parents. It is a bond where no matter the culture, religion or age, you are completely linked in heart and mind. It is the mutual experience of a parent who has become all too close to losing their child. It is the mutual understanding of medical jargon. It is the mutual passion of being forced to advocate like the scariest mama or papa bear.

But even more so: It is the severe thirst for each other's child to do well, as if they were their own. Every success story in the CHD world is a miracle and a bold statement of hope for our own kid. Every time a child with a CHD does well, we are empowered with hope and belief for our own kid.

I don't usually talk about all the other heart families that I have become close with. I have been blessed with some of the most incredible friends, that otherwise I never would have met. But these heart families mean the world to me. This past week in the Heart World, we lost many heart babies. Every day, there were more posts about heart warriors that lost their fight.

There is a little baby with HLHS that I was sure, we were losing. He is so adorable and has fought so hard. He endured three heart surgeries and he is only three months old. His parents had been told that there was nothing more that could be done, and they were going to have to say goodbye. But little Ben shocked the hell out of everyone. That little guy came back fighting hard. He reminds me of Tehilla. He reminded me to believe in miracles.

Tonight, on the third night of Hanukkah, I am thanking G-d for all the incredible blessings in my life: My husband, my kids- all three of my kids, my home and my happiness. I am especially thanking G-d for bringing all of these special heart families into my life.

Happy Hanukkah!

I have so many things that I've been meaning to write. Thank G-d, everyone is doing well.

It's my favorite holiday. It's the first night of Hanukkah. A festival of lights built upon a holiday of miracles. Every day we look into the beautiful face of our own little miracle.

This is the first year that we lit our chanukiah outside.  It was a beautiful experience. 

Happy Hanukkah everyone!

Heartiversary Tomorrow

Today, just one year ago, we were preparing ourselves physically, emotionally, and spiritually for Tehilla's third surgery. The odds were stacked against her and we were told repeatedly to prepare for the worst.

Our friends and family joined us in prayer, challah baking, and wearing red. Our daughter lived up to her name in every way and surprised our medical team by pulling through with flying colors.

We have had Tehilla a whole year longer than "we should have". This year has seen Tehilla learn to walk, talk, and blossom into the sweet, adorable, rambunctious and happy toddler that she is.

We are so blessed. So extremely and extraordinarily blessed.

ABCs

Tehilla has really started talking in sentences. It's very cute to hear that little voice say, "I want more pasta."

Tehilla right now has a cold and cough. We are keeping a close eye on it and praying that it runs it's course without any problems.

Here is a video of Tehilla talking and singing. She has a big bruise on her chin from bumping it hard on the stairs. But she is fine. Enjoy!

Boots

Toddlers take off their socks and shoes and throw them from the car without you realizing.

The local shoe store owner recommended boots with zippers that are hard to remove. He also believes that Tehilla did it on purpose based on how excited she is to have boots just like Mechal. I am inclined to agree with him.

Total Toddler

Thank G-d, everyone is doing well. Tehilla is keeping herself busy by undressing in public, screaming bloody murder if I suggest she wear a purple sweatshirt instead of a pink one, and pouring her water on me, if I give her the wrong color straw. She also insists on wearing this Hello Kitty hat that I crocheted her ALL day, nearly every day.

But she's healthy, so it really doesn't faze us.

Too Long

It has been too long since I updated the blog. I appreciated the messages from our blog family, checking in to make sure that we are okay. Thank G-d, we are all doing well.

It took everyone awhile to get over all the sicknesses, but thank G-d, we are all healthy and well. It has been very busy in our home for the past bit. For one, everyone was sick and we were just going back and forth from the doctors to the pharmacies. At one point, I had been at the pharmacy 6 times in 8 days. The pharmacist said to me, "Wow! You're back again! You must be having a hard week!" Then she smiled. I had a hard time smiling back and replied, "Yes. It has not been going very well." After she handed me the medications, she said, "L'hitraot!", which is a normal casual greeting and means "goodbye" but literally means "See you soon!". I responded, "No. Goodbye."

But thankfully, we are all back to our normal selves. Tehilla had started that new blood pressure medication at exactly the same time that she got sick and daylight savings time changed here. So, she was all sorts of crazy and was waking up at ridiculous hours. There was no way to know if any of it had to do with her new medication. But as of right now, she's just a regular two year old.

Speaking of which- temper tantrums. Oh my goodness. We are really in the throws of temper tantrums. The other day, Tehilla was eating corn and took a crayon and started coloring her corn. When I turned to her and said, "Oh no! We don't color our corn or food! Only paper! We only color on paper!" She started screaming and crying. She then threw her bowl of corn and hit me.

Two years old is a lot of fun. But thank G-d, that is what we are dealing with. Most days go by, and until it is medicine time and she gets 5 different medications, we mostly forget that she has a heart defect, at all. We are beyond blessed that Tehilla is doing so well.

We had hoped to put Tehilla into a private daycare. She is very ready and would greatly benefit from being with other kids. Unfortunately, when I called two highly recommended places, Tehilla was rejected. Because of Tehilla's heart condition, these places did not want to take on the responsibility. I have to say that it stung a bit. I tried explaining that in practicality, there really isn't much added responsibility. There are a few things to look out for, but overall, Tehilla looks and acts like a normal two year old. I couldn't stomach calling any other places after those responses.

Something that I haven't really mentioned, is that Tehilla is categorized by Bituach Leumi (National Insurance) as 100% handicapped. She is entitled to several special rights because of it. Upon turning two, her case file was up for review. We had to submit over 200 pages of Tehilla's medical history and they will re-evaluate her handicap status.

While submitting the paper work, we requested that she be entitled to a "sa'ayat refui", a medical shadow. Our cardiologist wrote them a long letter describing her heart's condition and we had him specifically write that she needs to be monitored and would benefit from a medical shadow. Our hopes are that she will be granted a medical shadow and we will then be able to send her to daycare with the shadow.

Other than that, we are in the midst of renovations on a bathroom. The previous owners made changes to the bathroom and installed the piping backwards. So, if you wanted to take a bath, it would flood the whole house. It has been pretty crazy here, but thankfully, it should be completed within the next few weeks.

Tehilla's speech has taken off. She is now putting words together and doing very well. Here is a video of her talking:

House of Sickies

Right now, Ron is the only one not on medication.  We are all sick. Little Tehilla has strept. We all went for a family outing to the doctor (we are fun like that). It was actually a last minute decision to ask the doctor to look at her too. She has been waking up at 4:00 am every day and has been crankier than usual. 

The doctor saw that her throat was red and normally wouldn't have looked further.  But because it's Tehilla, she ordered a rapid strept test and it came back positive.  So now she gets banana strawberry medicine.

We are all looking forward to a lot of rest this Shabbat. Shabbat Shalom, blog family!

Great and Not So Great Appointment

Today, Tehilla had an appointment with her cardiologist, Dr. Golander. She behaved very well for the echo, thanks to some YouTube videos.

Dr. Golander was very pleasantly surprised to see that her heart function has greatly improved! Unfortunately, her blood pressure is still very high. So, even though her heart function has improved, we can't reduce any medications, because her blood pressure is not under control.

Dr. Golander contacted a pediatric nephrologist for a recommendation for a blood pressure medication. He raised the dosage of her Enalapril and has added a new medication: Amlodipine. It has some side effects that we need to keep a look out for. Unfortunately, none of these medications come without some side effects.

I asked Dr. Golander what kind of time frame we are looking at for the Fontan surgery. Usually the Fontan is done around age 3. He said that we are looking at another year to year and a half. But she most certainly needs to have her blood pressure under control and not be on so many medications, to be a good candidate for the surgery.

For those that keep Tehilla in their prayers, please specifically pray that we get her blood pressure under control and are able to slowly wean off these medications.

We see Dr. Golander again in 3 months.

2nd Birthday Party

 This past Friday, we celebrated Tehilla's 2nd birthday! It's crazy to fully comprehend that she is 2 years old. Astounding, really! Ron and I kept joking that it's too bad that we couldn't make it a Harry Potter themed party, because she's "the girl that lived." (All you Harry Potter fans will get that.) Thank G-d, it was a lovely Elmo themed party and some of our family and friends were able to join us.

 We made her an Elmo cake. I must give credit where credit is due and mention that I've been teaching Mechal how to bake and cook and taught her how to decorate cakes. She helped ice about half of this cake! I'm very proud of her!

 And, here she is, the little birthday girl. She loved her party and when we showed her the cake, she kept trying to stick her fingers into it. She was very excited!

 One of our closest friends, bought Tehilla this "bimba juke"! She was ecstatic and has been riding on it non-stop. Tzviel spent a lot of time with her, helping her to get used to riding on it.

 Some of our other close friends and their kids bought her a bunch of presents, so she could dress up. She is obsessed!

Most importantly, she went crazy for the cake! We all had a great time at the party. For our family, this was a huge milestone. Our family and friends carried us through the hardest moments of our life and it was so special to be able to celebrate these amazing happy moments. I can't believe that is has been two years, since this little sweetheart was born and since we started the hardest, but most incredible journey of our lives.

Tehilla and Hunter

Thank G-d, there isn't that much to report. Tehilla is doing very well. I finally unpacked the box with my camera and was able to get some cute shots of Tehilla. And of our cat, Hunter. Tehilla has been learning to stop smacking Hunter and pet her nicely. Hunter is very patient with Tehilla. She never attacks Tehilla back, and always gives her a chance to play nice. I am attaching a video, as well.

Thank G-d for no news.

 

 

  

 

 

A Year

Dear Tehilla

To my dearest, sweet Tehilla,

Two years ago, I turned my alarm off, having not slept the entire night, and got out of bed. I looked around my room and wondered when I would be back home again. We woke Mechal and Tzviel, got them ready and out the door and off to school.

Two years ago, I took a shower and tried to stop my hands from shaking, as I scrubbed my enormously pregnant belly. You kicked me hard and I started crying. I nicked myself while shaving, and started bleeding heavily. I started panicking and breathing unevenly and your father had to help me out of the shower.

Two years ago, we took a taxi to the hospital, carrying two bags with us: one for me and one for you. I changed into a hospital gown and stared at the walls, while the hospital personnel swirled around me. They pushed my c-section ahead and I was grateful that the horrible waiting would end.

Two years ago, our family and friends raced to the hospital, so that we would have 10 men to make a minyan and name you right away. I walked into the operating room and had some wonderful surgical nurses who had looked over the paperwork before hand. They knew to stroke my back and give me knowing looks, but not to smile or act overly joyous.

Two years ago, a team of pediatricians walked in to the operating room with a bassinet. Everyone knew to talk in hushed tones. Your father came in and sat next to my head and they began the surgery shortly after.

Two years ago, you were born. You didn't cry at first, and I thought I would die. You let out a big shriek and I whispered your name, "Tehilla". They brought you quickly to us, so we could see you, and then put you in the bassinet and started cleaning you off and testing you. They rushed you out of the room and straight to the NICU.

Two year ago, your father left right after you, and rushed to the shul. Our family and friends had made it on time. A man that we had never met assisted your father in finding the proper prayer to say to name you. He then suddenly said the prayer himself and named you. We fondly joke that he may have been Eliyahu Ha'navi (Elijah the Prophet).

Today, you are a two year old little girl. You have big blue eyes and hardly any blonde hair. You are completely fearless. You laugh and run, and love to play dress-up. You smack the cat, and pick fights with your brother and sister who are double and triple your size. You demand drinking yogurts all day, and insist that everything is yours.

Today, you are strong, stable, and a complete joy. You have survived three heart surgeries, even when the odds were against you. You survived a heart attack during one of your three heart catheters. You have one more heart surgery in the next year or two.

Today, you bring smiles to our faces. You are a complete blessing and not a day goes by, when we don't thank G-d that you are here.

Happy birthday, baby girl!

Catchup Update: Sick, Hunter, Sukkot

Apology time: I am so sorry that I have not kept this blog up-to-date. So much has been happening, at such a rapid speed.  This year, the holidays work out that every other day is either a holiday, one day off, or Shabbat again. It's been impossible to find the time to write. But now, after the first day of Sukkot, I finally found some time.

So, first of all, we moved. I know I mentioned it, but I probably breezed over it. We were very excited about moving to this new house. I was extremely organized, but this move still had some big bumps in the road. The biggest setback was that our mover did not bring us our final 30 boxes until the afternoon before the move. As such, we were not ready to move when they got to us. So, they quickly took everything that was out and put it into unmarked boxes or giant bags and moved it. Mind you, the things that were left out at the end, are the things that are most essential to us. Those are the things that we still have not located. It has made the adjustment into our new place that much harder.

We bought a house that was previously owned by a family of 11. No, that was not a typo. 2 parents, 9 children. This house and every wall inside of it received a lot of "love" from its inhabitants. So, to sum it up, this place is a real "fixer upper". But, we are excited and working hard to start fixing it up. Of course, it has gone something like this: Move cupboards, spackle, sand, paint- stop- Rosh Hashanah. Sand, paint- stop- Shabbat. Sand, paint, fix a bunch of things, sand, paint - stop- Yom Kippur. Put everything back, spackle, sand -stop- dear friend's wedding, Shabbat. Spackle, fix a bunch of things, Sukkot.

It's been a bit difficult to settle in. But we truly are loving it and we are loving making this home ours. One of the biggest difficulties was the insects. Before we moved in, I had the house exterminated. Clearly, it didn't work and the exterminator will be returning shortly. But there were bugs everywhere. Now, I may be a fierce Heart Mama Bear sometimes...but I am a scared chicken when it comes to slugs, earwigs, spiders, gray rolly ugly looking things, and ants.

One day, Tzviel was playing outside and he called for me. I was in middle of painting and told him I couldn't come outside. He screamed, "You have to see this!!! It's a turtle! A real turtle!" Then I hear Tehilla say, "Hello! Hello! Hello!"

So I came outside and there it was. A turtle in our backyard. Here is the video of the turtle and Tehilla being super cute.

 

As it turned out, the previous owners owned 2 turtles and didn't take them with them. Or inform us that we now had turtles on our property! Well, we have only located one turtle and we found him a loving home with some of our friends. As soon as the second turtle is found, he will also be relocated.

A few days later, a very sweet, well groomed orange cat turned up in our yard. She was timid at first, but looked well kept and friendly. Not in a crazy rabies kind of way. In a normal cat kind of way. We called to her and she came. So, we put out a can of tuna. She gobbled it up extremely fast. Then we gave her some distance and watched her hunt lizards and bugs in our garden. I just kept chanting, "Hunt! Kill them! Hunt! Get rid of all of the bugs!"

And suddenly, all- no, I really mean ALL of the bugs stopped coming into our house. Not a single earwig or slug was to be found. We decided to let the orange kitty live outside in our garden. We named her Hunter. She is very affectionate and the kids adore her. Tehilla has learned to say "Hunter!" She also, unfortunately, started hitting the cat. The cat has never once done anything in retaliation, and Tehilla is always immediately punished to go inside.

Speaking of Tehilla- She will be turning two soon. On October 1st (there is your heads up, that some emotional posts will be coming). And she is taking the whole "terrible twos" thing very seriously. She has been pretty whiny and started saying "mine" and "I want" all the time. Not to mention destroying things and making messes wherever she goes. It's been...exhausting.

I had posted that she had a cold and cough. Well, it took a bad turn at one point. We took her to the doctor and she was put on antibiotics. She very quickly began to recover and is now doing very well.

This is the first year that we have an incredible sukkah space. Here is our sukkah that we have been eating in, some of us have been sleeping in and spending time in.

I hope all of you are enjoying your Sukkot as much as we have. May your holiday be filled with happiness!

 

Cold and Cough

Tehilla has caught a cold and this morning she woke up with a cough. Her cough very quickly started to go into her chest and her breathing became much heavier. She looked pale and her lips were purplish. So, she is being treated with inhalation and a humidifier and we are avoiding any further steps at this point. She looked and sounded better after the inhalation, so let's hope that she has a good night.

Rosh Hashana Pictures

Here are pictures of my silly goofballs! This is what happens when you try to get a family photo.

Shana Tova!

Well, we did it! We moved. We have spent the past few days wading through our cardboard box jungle and have managed to unpack about 80% of our things. I'm proud to say that we can see the floor- most of it. The kids are settling into their new rooms and everything is slowly starting to come together. Once we have painted and fully unpacked I will post some pictures.

Tonight is the first night of Rosh Hashana. We are happy to be sleeping in our new home and have thankfully been invited out for all our meals to family and friends. I was able to steal away a few minutes from unpacking and cleaning to write some thoughts down.

This time last year. I can't help but think back to where we were and what our mindset was going into Rosh Hashana. This time last year, we were still digesting the devastating news from Tehilla's heart catheter. We were told that she desperately needed surgery, but her chances of the surgery going well were minimal. That was the mindset that we went into Rosh Hashana with. I remember that last year, I managed to make it to shul (synagogue) for some time, and I remember crying into my machzor (holiday prayer book). I remember begging and pleading for my little daughter's life.

Her second birthday is in two weeks. My little girl has survived three heart surgeries and three heart catheters. She is a fearless, rambunctious, sweet and affectionate blonde haired, blue eyed little girl. Not a day goes by, that she does not bring a smile to our faces.

We are going into Rosh Hashana this year with joy and happiness in our hearts. With the words "thank you" on our lips. I can't wait to get to shul again, this year and cry tears of happiness into my machzor again.

To all of our family and friends, to all of our blog family, and to everyone out there, our family wishes you the most heartfelt shana tova (a good year). May this year bring each of you health and profound happiness. To everyone who faces struggles in their lives, I hope that your prayers are answered with a "yes".

Much love to all of you! I hope to post pictures later of the kids.

Everything is Fine- Moving Day

I did not intend to worry anyone with the lack of blogging. Everything is fine. We are all healthy and well and Tehilla couldn't be cuter or naughtier.

Tomorrow, we are moving to our new home, just a street over, in the same neighborhood. It is very exciting and very busy. Tehilla has enjoyed unpacking boxes that we did not manage to tape closed fast enough and running away with the tape and markers. But she's sweet and silly and doing fantastic. She is pushing herself to say more words like "door, bye, and orange." 

Once we are settled in, I will post some pictures of Tehilla in her new room.

Israel is experiencing a terrible desert sandstorm. Our skies are orange and sand has been floating around for two days. We have made sure to keep Tehilla indoors as much as we can and have our windows shut constantly.

Beach Fridays

This past Friday, we went to the beach for our last beach day of the summer. We seem to have found our favorite beach which is Palmachim Beach close to Rishon L'Tzion. It is beautiful with soft sand and turquoise water, but also kept very clean and seems to be very family oriented. We have also discovered it takes us only 54 min to get there from our home!

For the first time ever, Tehilla was not afraid of the water!!! As soon as I walked up to the water with her in my arms, she started to whine, but I sat down with her in the water. We brought containers to collect tons of seashells. So, I plunked a container down next to her and showed her what to do. She was so preoccupied with finding seashells, she forgot all about the water. Soon, when the water would come in and go up to her stomach, she squealed and said, "Weeeeeee!" She even started wandering into the water and didn't react when the water would splash her face.

Unfortunately, I didn't bring my camera up to the water, so I have no photos of that. But I do have plenty of pictures of her on the beach and some videos.

 

More Updates

Last week, we were out and about every day. Thank G-d, the heatwaves have finally seemed to stop, which allowed us the opportunity to take Tehilla out.

One of our day trips was to the Teddy Park splash pad. Tehilla had fun running around in her little bikini (and sunscreen), but was terrified once the water turned on. I had to hold her and inch close. She finally stuck a hand in but then freaked out. Tzviel and Mechal had a blast, so it was well worth it.

Here are pictures from that day. You can see the walls of the Old City in the background of the splash pad.

Enjoy!

Busy, Busy, Busy

My goodness!  I haven't posted in a very long time. This past week was packed with outings and fun.

Tehilla has been doing very well. Her speech has skyrocketed! She is now saying Hello, yellow, purple, window, blue, beach, animals...and more. It's amazing!

I will be posting lots of pictures and videos to make up for last week.

To get you started here are some pictures from the Jerusalem Biblical Zoo. Tehilla is now at a great age for the zoo and squealed when she saw all the animals up close.  She had a great time and loved every second of it.

Hearing Test

Today, Tehilla went for a hearing test. It was something necessary to check into with a speech disorder such as Apraxia. The appointment started off with me giving Tehilla's medical history. That always forces some raised eyebrows and jaw dropping. I explained that Tehilla was born with half a heart, and the woman stopped me and said, "What? No, that doesn't make sense. What do you mean?" So I explained that Tehilla was born with half a heart, and it's a condition called HLHS and she's had 3 heart surgeries to reconstruct her heart. Some heart awareness was made and the woman couldn't stop staring at Tehilla. I ran through the rest of her medical history.

Tehilla was not cooperative. She wouldn't stay on my lap in their hearing lab and they had to accommodate her demands to sit on a little kid chair. At one point, she wanted to play with the technician and kept showing her a ball and saying, "Ball!" over and over and got frustrated when she wouldn't respond. She ignored purposefully or not (?) many of the sounds. When the technician said "No!" to her when she stood up and walked away, Tehilla burst into tears. I had to advocate a bit and have them do things a bit differently to get Tehilla to cooperate.

In the end, they felt that overall her hearing was fine, but since she was uncooperative, they couldn't fully assess her. They felt that she should be "under observation" until an older age, where she can get a full assessment done. Their reasoning was because it's Tehilla. They want her to come back when she is two and a half.

Talking and Singing

On Friday, we went to Palmachim Beach with some of our dearest friends. We all had a wonderful time. I wish I had taken pictures, but I completely forgot to. In any event, Tehilla was terrified of the water again. In fact, she didn't even like it when I held her and walked to the water's edge and got my feet wet. We tried several times, but she was freaking out. However, she was completely content to throw sand on everyone and everything. We brought back the sandiest toddler.

I managed to record two videos of Tehilla talking and singing from yesterday and today. Tehilla is now trying very hard to imitate words and if we slow down and show her how to say things, she has been pretty successful in imitating a lot of words. She is also using the words she knows constantly and trying to put two words together, like "no more". It's great to see her making progress like this!

Enjoy the videos!

Fun Out of the Heat

This summer has been challenging in caring for Tehilla.  Israeli summers are intensely hot to begin with, but we've had a few heat waves here, that have brought temperatures way up.

For Tehilla, it is difficult for her to properly regulate her body temperature.  So if she is a little overheated, she begins to soak herself in sweat. It is extremely easy for kids like Tehilla to dehydrate and it can become dangerous very quickly.

So, this summer has been spent indoors and going from air conditioning to air conditioning. 

Today, we went to an indoor gymboree for a few hours. Tehilla had a blast running around, climbing on the climbing toys and trying to collect all the run away balls from the ball pit. Ultimately, she would fill her little arms and then all the balls would spill out. She said, "Uh-oh!" And then would go around trying to collect them again.

We finally put her into the ball pit. She was so excited! She kept belly flopping into the balls and lying back. She has really become fearless and had a blast today.

Additionally, she has started babble singing to herself. Often, she will be playing with her toys and we hear this cute little high pitch voice singing in babble. Whenever she notices us or we say anything she stops singing and screams, "No!" I will try to capture a video of her singing. 

Enough is Enough

We had enough of Clonidine and Tehilla's reaction to it. She had been on a third of the dose for nearly two weeks at only twice a day, as opposed to four times a day, and was irritable and cranky. Nearly anything we asked her or was offered to her was met with whining and shrieking. So, we stopped the medication. I messaged our cardiac nurse, Yifat, and told her that we were done with the medication. She called our cardiologist and he agreed with our decision. He is now considering which other medication to start Tehilla on.

In the mean time, Tehilla has been making huge progress with speech therapy. Ilana has worked with her on key words needed for basic needs, such as: yes, no, up, in, off, on, out, boom, more, uh oh...etc. Tehilla is now nearly exclusively using these words and has even started to try to say words on her own. She is doing very well.

Cranky Days

Last week, we restarted Tehilla on her Clonidine. Previously, when she was on it, she cried from sun up to sun down and was just an extreme mess. She is supposed to be getting her dose 4 times a day. So, when we restarted it last week, we started it on a third of the proper dose only twice a day.

While thank G-d, she is not crying around the clock, she has been cranky and difficult. She has nice long periods during the day where she is sweet and smiley and destroying laundry piles and kicking over something Tzviel worked hard on.

We are waiting to see that she adjusts to that very minimal dosage before raising it slightly either by amount or times per day.

Definitely the Medication

And just like that- Tehilla is back to her normal smiley self. The whining and crying stopped. Now we know it definitely was the medication. 

Tomorrow we will go back on the medication at a third of the proper dosage and see how she manages. We may have to be patient for several days, in the hopes that her body adjusts.

Taking a Break

I just spoke with our cardiologist. Before I say anything, I just absolutely love the level of care that we receive. If Tehilla's a heart warrior, her cardiologist is a rock star heart doctor.

Anyways, I explained to him how awful Tehilla's behavior has been, the non-stop crying and the level of miserableness. He consulted with a neurologist, who confirmed that while Tehila's reaction is not common, there are known side effects for Clonidine of irritability, head aches and exhaustion.

He agreed that we should stop the medication for two days. That way, we can make sure that she isn't coming down with something in a stupid spin of coincidence. We'll give her body a break. If we see that she goes back to being her usual self, then we know it was caused from the medication. If she comes down with some other symptoms, then we'll know she is just getting sick.

After two days, we will restart the medication on a third of the proper dose. If it is from the medication it should take her body a little bit of time to adjust, but then she should be okay. If we see that she is not adjusting and still losing her mind, then we will have to stop the medication and try something else.

Terrible Adjustment

Tehilla has not adjusted well to her new medication.  We were told it would "relax her". Well, in the picture you can see. Tehilla took her blankets, dolls and sippy cup and just lay on the floor. When she wasn't just lying there, she was crying relentlessly, all day.

So, Friday, I messaged our nurse and told her to call Dr. Golander because Tehilla wasn't handling the medication well. He said that we should half her dose of Clonidine for the next two weeks and then go back.

We did that, and spent all of Shabbat with Tehilla crying and whining non stop. She was a mess. This morning she woke up at 5 am and has not stopped crying since.

I asked our nurse to have our cardiologist call me. But as of right now, I'm taking her off Clonidine.  We'll see what Dr. Golander has to say.

Of course, for all we know, Tehilla could be coming down with something and it is just a coincidence. But we need her off this medication to find out.

No Talking for Tehilla- in Camp!

This email was exactly what I needed. It brought a tear to my eye. Thank you, Rabbi Moshe Zucker and all of NCSY Camp Sports!

"NCSY Camp Sports is a one month Summer program for boys on the campus of Ner Israel. We heard about the program that Yeshiva University high school was running and decided to continue it this summer. We hope that Tehilla is doing well and just wanted to let you know that 85 boys and 30 counselors are participating in the program for the month of July.

Rabbi Moshe Zucker"

Appointment of Highs and Lows

Tehilla sauntered into the cardiology department and showed her "polish" off to everyone. She gave hi-fives and waved hi to all of the nurses and doctors. She made friends with all of the other patients and hammed it up for everyone. Our nurse, Yifat, came to see us and couldn't get enough of Tehilla.

We went in for the echo. Tehilla lay down and looked pretty unsure whether she was going to cooperate. In the end, watching Fisher-Price videos won out, and she was calm for all of it except when they needed to do her neck. It's very uncomfortable and Tehilla freaked out a bit, but eventually calmed down and let them finish.

"I am feeling really happy!" is what Dr. Golander said while looking at the echo. Tehilla's heart function is really good. However, when he looked her vitals, he was not happy with her blood pressure. It's still too high.

Here's the way it works- Her blood pressure is very high. The increased pressure from her blood is what weakened her heart muscles in the first place. Which caused her to be in heart failure. We started giving her Digoxin to force her heart to squeeze harder, despite the pressure. We also have been giving her Enalapril and Carvedilol to lower her blood pressure, which is the root of the problem. So, clearly the Digoxin is working and giving her great heart function- but we haven't really fixed the underlying issue which is her blood pressure. We've basically put a band-aid on it.

So, we have raised the dose on Enalapril and Carvedilol to the maximum dosage and we are adding a new medication called Clonidine. It is a medication that is used for a few different things, one of them is high blood pressure. It will have a relaxing effect on Tehilla for the first while until her body adjusts to the medication. Let's hope that this finally lowers her blood pressure.

We will see Dr. Golander again in 3 months.

Pink in the Pool

On Friday, our plan was to go to the beach. However, we completely forgot that in Israel right now, it's jellyfish season. We found a pool nearby and headed there.

Because of Tehilla's heart, Tehilla has trouble regulating her body temperature. Kids like Tehilla usually do not last long in the pool. They usually start turning purple and blue after 5-10 minutes in and need to go out to warm up.

We were all ready with towels on the side, to jump out and start warming her up. It didn't happen...

She stayed in the pool for 40 minutes and didn't even turn slightly purple. We were amazed! Thank G-d!

We are now waiting for our appointment with our cardiologist.  An update will come shortly. 

Favorite Place

Can you guess where we are headed today? Pictures later!

More Fun

I thought you would enjoy a short video of the silliness that is Tehilla. If you notice in the video, you may see blue marks up and down her arms and legs- no need to be alarmed! That's Tehilla showing her creative side by coloring all over herself. She is so kind, that she would never want to limit her artistic abilities to only herself. She randomly runs through a room with a marker (we have moved all markers up high, but she always manages to find one in some hiding spot) and colors on all of our legs and arms. When you least expect it, she just pops up and draws on you.

Thank G-d for the naughtiness!

Dressed Up

Tehilla has recovered from her sinus infection. She wasn't cooperative at speech therapy this past week because she wasn't feeling well. She is now saying "Abba", "off", and "up" perfectly. 

Lately, she has been very playful and imaginative. She likes to dress up and that means everyone else in the family are missing their things because she swipes them. Today, I called her to come as we were about to walk out the door. This is how she came to the door!

Sinusitis

We ran to the doctor early Friday afternoon.  Tehilla had a fever with a cough and was pulling on her ear. We were supposed to see the doctor on call but when our regular doctor finished all of his appointments and saw us sitting in the waiting room, he told the secretary that he would see us. Even though his family was waiting in the waiting room to go home. Dr. S is a one of a kind doctor and we just adore him and the quality of care he gives us.

What's more important is that when he said to Tehilla, "Okay, Gorgeous. Let's go. It's your turn." She slid off the chair and ran directly into his office. I handed her the health card which she handed to him with a giant smile. 

He checked her thoroughly and determined that she has a sinus infection. He prescribed her medicine and she is already much better. 

Here's to a good week for all, blog family!

Keep It Up

Toddlers cry because they finished the chocolate and have no more. Tehilla is adorably ridiculous.

Today, I was asked, not for the first time, if Tehilla still needs prayers said for her. Tehilla is still in heart failure.  It's easy to forget with how great she is doing.  The truth is that her medication keeps her stable and running around like a little monkey. We are very blessed. G-d has blessed our doctors with the knowledge to keep our little girl happy and rambunctious. So, yes, she still needs prayers to keep her healthy and well.  Her next cardiology appointment is next month.

Hadassah Magazine Article

A number of months ago, I was contacted by a woman named Wendy Elliman. She is a writer for Hadassah Magazine. She was writing an article on Hadassah Ein Kerem's PICU and was specifically focusing on pediatric cardiac patients. Our surgeon suggested that she give me a call.

I spoke with Wendy a few times and we discussed Tehilla and our experiences. My grandmother called me to tell me that she was surprised and happy to see an article about Tehilla in her Hadassah Magazine. The article just came out this month.

I have to say, that I was very happy to participate. For me, every opportunity to raise awareness about congenital heart defect is an opportunity to gain support, help educate, and attract attention for medical funding and research.

Here is a link to read the article online:

http://www.hadassahmagazine.org/2015/06/18/big-love-for-small-patients/

Enjoy!

First Shoes

We bought Tehilla her first pair of shoes! She keeps looking down at her feet and clapping and getting excited!

On Track

It's late at night here, but I couldn't go to sleep without sharing my happiness with our blog family. Today, Tehilla had her follow-up appointment with her physical therapist at the Child Development Center (Hitpatchut Hayeled). That appointment could not have gone any better.

Our appointment started with Tehilla running into the therapy room and immediately playing with all the toys that she could get her hands on. She was in a very good, playful mood and she was extremely cooperative. I updated our physical therapist on Tehilla's well-being, and on how I felt Tehilla was doing in terms of physical development. She observed Tehilla and was absolutely amazed by how far Tehilla has come. She ran and scooted all over the place, running up and down inclines and declines, stepping over items, crouched and steadied herself beautifully.

While I was talking with her, the previous speech therapist that we had chatted with last time, came to see us. I updated her on Tehilla's diagnosis of Childhood Apraxia of Speech. I explained to her that our concerns grew after we saw a serious regression in Tehilla's speech, joined with watching her grapple to move her mouth to immitate, and that when asked to say something she could not immitate or repeat, but without thinking or planning, she could make the sounds. I explained in length what we had observed at home and this speech therapist conclusively agreed with Tehilla's diagnosis. She wanted to hear about how Ilana was working with her and was beyond elated to hear that Tehilla is making progress every session. She reiterated how serious CAS can be and was astounded to hear the progress that Tehilla has been making.

She told me that usually, she would push for us to do speech therapy through the Child Development Center, but hearing how successfully things are going and that Tehilla has developed such a wonderful working relationship with Ilana, she absolutely wants her to continue with Ilana. She stressed that if we needed anything, we are welcome to call her.

Our physical therapist then told me that she had examined and observed Tehilla enough. She said that Tehilla has pushed forward so much, that she is now on track for her age and her development. She feels that she is doing so well, that there is no need for her to continue routine follow-ups. She did say, that Tehilla's file will remain open, and that if I have any concerns whatsoever, to call them and they'll see her immediately.

Then the two therapists discussed Tehilla's next step in evaluation. I began to discuss with them some thoughts Ron and I have been having in terms of Tehilla and schooling. Because of Tehilla's speech disorder, we have been thinking and planning ahead. We realize that it will not be possible for Tehilla to go to a regular gan (nursery) at age 3, with the speech difficulties that she has. While we hope, pray and expect that there will be a huge improvement by next year, it is very likely that she will still struggle to communicate. I explained to the therapists that our hopes are that she can go to a speech oriented special education gan. These gans are extremely sought after because they take very few children and are given the most amazing therapists and teachers to help them daily.

The therapists were amazed that we have been thinking about this and absolutely agreed. They felt strongly that she should be entitled to this kind of specialty gan and said that they were going to align their thinking and actions to help us and make sure that she gets the placement. Because of this, they are scheduling Tehilla for an all-inclusive evaluation, where she will be evaluated by a doctor, physical therapist, occupational therapist and speech therapist at the same time. They will do this evaluation in 6 months, which is perfect scheduling for us then to apply for these special gans with their help and receive approval with their help.

Then the physical therapist gave us permission to buy Tehilla her first pair of shoes. I turned to Tehilla and told her we were going to get new shoes and she started giggling and clapping and saying, "Wow!"

It was a fantastic appointment and we are, once again, very blessed to be surrounded by wonderful professionals who are so willing and happy to help.

Nothing More Than Normal

Tehilla has started waking up at crazy hours again- probably because of some teething. Last week, I brought her to the doctor, just to check that her ears were clear. We weighed Tehilla and discovered that she had lost some weight. While it could just be due to normal toddler activeness and maybe, no-hopefully, a growth spurt...because it's Tehilla it needs to be watched. So we are scheduled to go back and have her weighed in a month to make sure.

Other than that, Tehilla is making progress, every week, in speech therapy. We work hard all week, to reinforce what Ilana has taught her, and she is being forced to say "up, in, on, M-sound, S-sound, B-sound, N-sound". She has also started to say "no" on her own. These are all positive steps, and while they are small steps, we are moving in the right direction. She also learned to say "Lana" for Ilana.

She also loves singing and motioning along to "Row, Row, Row Your Boat", "The Itsy Bitsy Spider" and "Round and Round". In this video, she is motioning along to Mechal singing "Round and Round." If you know the song, then you'll see that she gets excited and goes ahead of the song.

Enjoy the miraculous cuteness!

Being A Normal Toddler

Tehilla is thank G-d, doing well.  She is making nice progress in speech therapy. She does something very cute. Ilana prompts her mouth and face, to show her how to make sounds. So Tehilla immitates her and prompts herself while making the sounds. I'll try to get a video of her doing it next week. We are still waiting for approval to move to three sessions a week.

Next week, we have our follow up appointment at physical therapy. Tehilla is now walking very steadily and running as fast as her little feet can take her- which thankfully is not that fast! She demands to walk wherever we go, and often tries to scoot off. She does not get out of breath anymore and can handle a slight uphill walk. We are waiting to get the green light from her physical therapist that she has corrected her walking, in order to buy her first pair of shoes.

Other than that, she is an active and very silly toddler. She loves playing with her doll stroller and a dollhouse. She plays in the toy kitchen and brings us cups to take pretend sips out of. She also loves to wrestle Tzviel, and pull Mechal's hair. She loves to knock over anything that Mechal and Tzviel have worked hard to build, and steal Mechal's headbands right out of her hair and stick it on her own head. Thankfully, she always gives them a very naughty mischievous smile, like the one in the picture below, and they find her so cute, they usually just chase her and tickle her.

Speech Therapy

Yesterday, Tehilla had speech therapy. I was sick, so Ron took Tehilla. Ilana has been working on vowel sounds with Tehilla. Ilana took a video and sent it to me. You can see her prompting her mouth and face to help her coordinate how to make the sound. Enjoy!

Half-Hearted Cuteness

Tehilla caused a bit of a scene in a shoe store the other day. But a cute scene. It's not her fault, really. It's just that there were too many sparkly stilleto shoes to take off the shelf and try to get her teeny tiny foot into. I thought the store clerks would be upset, but they thought it was so funny, they brought her some more shoes to try on. Diva heart warrior princess!

I also took some videos of her being all around cute. It's such a nice breath of fresh air to write normal toddlerhood posts. She hammed it up for the camera and even showed some of her signing. Here are the videos: