Friday, November 24, 2017
There is always one or two interactions that always stay with me. This time it was Chaya in Manchester and Shira in Leeds.
After speaking, Chaya came up to me and let me know that as a med student, how much my words meant to her, that our story would always stay with her and she would never abuse her power as a doctor, like Dr. Big Nose.
Then there was Shira who is studying to be a medical clown and loved hearing about our interactions with medical clowns and how bringing a smile to a family stuck in the hospital can give the perfect relief to a hard situation and actually help recovery.
I'm brought in to speak to students to share our family's journey and inspire them. But it's situations like these that actually bring hope to me. Thank you, Genesis, for the wonderful experiences and all the good that you do!
And now, blog family, it's time to go home and spend Shabbat snuggling with my family!
Wednesday, November 22, 2017
I arrived in London on Sunday night. I've been flown in by a program called Genesis. They provide programming for university students in England.
Monday, I was sent to Nottingham, where I gave my first speech. Yesterday, I went to Bristol.
I speak about our family's journey and what we have gone through. I also talk a lot about you, blog family, and all that you have done to support us and help us through out heart journey.
It's unusual to spend so much time reflecting on our life but it only reminds me of how truly blessed we are.
Today, I will be speaking to two different groups in Manchester.
Sunday, November 19, 2017
So after being home for one week, I am now waiting to board my flight to London. I'll be all over the country during the next few days, speaking about our family's journey.
Tehilla's reaction when I said I was leaving again, "It was amazing when you were gone. It'll be great!" Thanks, kid. I'll miss you too.
See you all on the British side.
Wednesday, November 15, 2017
Saturday, November 11, 2017
I had meant to post so many things, but there was something always more important. And now these two important things that I want to share and announce are completely overshadowed for me by what happened last week. So, very quickly, for those that won't read through everything else:
1) This Wednesday, Tehilla has her cardiology appointment. There are nerves and anxieties flying around, even though she has never been so stable. But every new appointment brings a possibility for bad news. So, we are praying this appointment brings only more good news of stability and easy sailing. Of course, I will update the blog.
2) I am flying next week to England. I have been asked again by Genesis to speak about our family's journey for the new year of students. I will be speaking at 4 or 5 university campuses in 5 days. I will blog about my experience, like I did in February.
In March, I took my kids to the US to visit my Grandma. Three years ago, Grandma was rushed to the hospital and diagnosed with a severe heart aneurysm. She was not given long to live and refused surgery at her age. She was told the best possible outcome was that she had 6 months to live.
At the time of this news, Tehilla was not even a year old. She was unstable, a terrible candidate for her Glenn surgery and was running out of options. Hearing about my Grandma's diagnosis was the most crushing devastating news and worse of all, because of Tehilla's situation, I had no chance to see her or bring the kids to see her. It broke my heart and hurt worse than I could ever explain. But it was what it was. So I resolved myself to calling her frequently, like I already was doing, Skyping with her and sending her frequent pictures of the kids.
But Grandma surpassed their prognosis. Maybe this is where Tehilla gets it from...who knows. G-d I hope she gets it from her and gets so much else from her. Grandma lived 3 years longer than she should have. At every doctor's visit, she was told that she was living on borrowed time.
This past March, Tehilla was stable and Grandma was sick and seemed to be taking a turn for the worst. Quickly, we booked tickets and I took all 3 kids to see her. She got to spend time with them and they with her. They got to experience the outpouring of love that only Grandma is capable of and they have lasting memories from that.
A week ago, Grandma's heart aneurysm tore and she was put on hospice care. She went home to the care of her children and grandchildren who fulfilled any little request short of visiting Atlantic City (while on hospice and a torn aneurysm) and a pastrami sandwich at 8:00 am. I booked a flight with the hope of seeing her one last time. But unfortunately, Grandma passed away last Saturday afternoon.
I was asked to speak at her funeral on behalf of my siblings, cousins, mother and aunt. I cried throughout the eulogy and don't have real memories of if my words properly conveyed who Grandma was. Truthfully, no amount of words can adequately describe the extreme love that out-poured from this woman. Her home emanated it as did her food. She was unnaturally kind and giving and just absolutely lovely. Everything about her.
Being at the funeral and helping my mother during shiva brought a certain form of closure. I stopped waiting for Grandma to walk out of her bedroom and check on everyone. Instead, with my siblings and cousins, we explored the adventures and relationships of Grandma's life by unpacking her photos and talking with distant relatives and her friends she traveled and played cards with.
I arrived home on Friday and feel the mourning with me. The advantage and disadvantage of coming back home is that my life is forcing me to move on. My kids need attending to, my clients need my attention and the fridge needs me to restock it. I wish I had more time to dedicate to just sitting and talking with everyone about Grandma, but life demands I don't. And I know, that Grandma would absolutely want it that way.
Grandma lived her life to the fullest. She told us that she was lucky to have truly loved two men in her life. She went on cruises and trips. She hosted for all the holidays and cooked the absolute most delicious food. She played bridge and poker with her friends. She had her hair done every week or two, as well as her nails. She went out once a week for lunch with my aunt and rented books and movies with my mother and had analytical discussions about it. She would talk politics and literature with her grandchildren.
I know Grandma would want to see us keep living, keep moving. And since I absolutely have no choice, I will. I feel her with me. I felt her presence on Shabbat. I wore one of her silk scarves. I heard her little sing-song voice saying, "Ooh, how lovely. You look beautiful (although she pronounced it bootiful)." The tears will slowly stop coming and I'll feel stronger soon.
May this week bring all that mourn her some calmness and hopefully a boring uneventful appointment for Tehilla.
Sunday, October 29, 2017
Friday, October 27, 2017
Thursday, October 12, 2017
Sunday, October 1, 2017
Wednesday, September 20, 2017
Shana tova to you and all of your families! May this year bring joy and happiness to all of our lives and lots of time to enjoy it. We did a family photoshoot this summer, and these are the final photos. We are so blessed to be together and aren't taking a single moment of that for granted.
Sending our love to all of you!
Wednesday, September 13, 2017
Well, the Ministry of Education gave the approval for Tehilla to receive a medical shadow full time. She will even have the shadow for the tzaharon (afternoon extended hours)! This morning I got the call that we received approval, and two hours later, our medical shadow called to introduce herself!
She came over this afternoon to start learning about Tehilla and what her job is. She seems very nice and very soft spoken. She has taken first-aid courses, but she will be sent by the municipality for a more in-depth course.
May her job be completely boring!
Sunday, September 10, 2017
Friday, September 1, 2017
Tehilla started Kindergarten today! In a regular school! We don't have her medical shadow in place yet, and we aren't worried at all. Because she is entitled to it, we will get her a shadow, but the woman will be bored and helping the teachers with regular school stuff.
We were the first ones to arrive at school which gave me time to explain to one of the teachers about her heart. I explained that they had to watch that she doesn't dehydrate and that she can tire easily. To look for purple lips or nails or if anything looks off. And that a fall can make her bruise more severely. That she is totally fine and normal and needs to be treated as such.
I also prepared laminated cards for emergencies. It has all the details that a paramedic would need, with all her information and to take her to Hadassah Ein Kerem Hospital. One card remains in her backpack and the school has two to keep on the fridge and near the phone. May they be the biggest waste of time.
Tehilla was a bit nervous but immediately warmed up and jumped right in to coloring and exploring her school. She has a few friends from her previous school, which made her very happy. She is crazy happy with her Frozen backpack, Frozen lunchbox and Frozen water bottle. We also found Frozen school shoes, so she is happier than happy.
September 1, thank G-d!
Monday, August 21, 2017
It's been some time since I really sat down to rifle through my thoughts and get them out on virtual paper. To be honest, this summer has had me struggling to keep my head above water, just in scheduling and trips with the kids and the hellish last weeks of August. This is a post I've been meaning to write for almost 2 weeks...
Monday, August 14, 2017
We were perfectly prepared for Sammy, the puppy.
Collars and name tags- check.
Leashes and dog crate- check.
Dog toys and water bowls- check.
Check if your 3.5 your old is a raving jealous overly excited madwoman who picks puppies up by the face...oops. Missed that one.
So Sammy settled in nicely but Tehilla got a serious case of "new baby/jealous sibling syndrome" and we have been scrambling ever since to help her adjust and give her attention and teach her not to smash puppies skulls. It's been fun. (That was the sound of my eyes rolling).
We have Sammy nearly housetrained and sharing a peaceful existence with Hunter the cat. She has learned come, sit, down, let go, look at me, dance, paw, and is making a lot of progress with stay, and leave it. She is sweet and affectionate, smart and playful and has been an amazing new addition to our family.
But hardly an hour goes by without someone screaming , "Tehilla! Don't pick the puppy up by her ear!" Or "Stop squashing the puppy!" We are making progress and teaching her how to properly handle the puppy. We will get her adjusted with time...
Tehilla has been put on an antihistamine because we think she has allergies and has had a dripping nose for over 6 months without any relief. So far there is improvement.
Otherwise everyone is surviving the summer and providing the perfect amount of crazy for us to be counting down the days until school starts.
Tuesday, July 25, 2017
When I came to pick Tehilla up from school yesterday, her teacher said to me, "Something is not right with her. Her color looks off to me and she is low energy. I couldn't find her pulse ox to check her, but something isn't right."
I looked at Tehilla, who was pale and had swelling in her forehead (something that happens to her when her oxygen dips, her eye was pink and she looked unwell. She looked down at the floor and whispered, "I took it (the pulse ox) out of my bag. It's at home."
Of course all the batteries of all 3 of our pulse oximeters were dead, but once we found replacements, we checked and her oxygen was at 80. Her baseline is 85-90. It's not critical but it's not good. Her heart rate was 101, which is perfect. She had no fever, so I made her an appointment with the on-call doctor. We lucked out and got our favorite, aside for our regular doctor.
We walked into the doctor's office and she was calmer than she usually is. She didn't want to talk to her. I explained why we were there. The doctor took out her pulse ox and said, "Let's take a look how your oxygen is now. Can you give me your finger? Do you have one of these at home?"
Tehilla offered her finger, smiled and said, "My pulse ox is pink. Yours is black."
The doctor laughed and said, "You are so lucky that you have a pink one. I need to find a pink one."
She checked Tehilla thoroughly and found nothing except a double eye infection. Her oxygen was at 84. Drops were prescribed and we were told just to keep a look out. This has happened quite a few times- a dip in her oxygen as a response to an infection and/or pain.
She's doing better today, but a bit off still. We will keep her home today and see how she does.
Friday, July 21, 2017
We are welcoming to the family our 7 week old golden retriever puppy, Sammy! Sammy will be Tzviel's dog but an important part of our family.
With all that our family has been through, it has taken a big toll on everyone in our family. Some TLC from a very sweet, affectionate dog will provide some stability and animal therapy for years and years.
We have been working on this for over 6 months and have everything ready. Tzviel and I have been watching dog training videos. He has been practicing on Hunter, Mechal's cat, with no luck.
Speaking of which, yes- Hunter is staying, no- we aren't worried. We consulted our vet and Hunter is comfortable around dogs in our home.
We are very excited for this new transition. For the next bunch of weeks, we will be limiting the guests into our home, until some basic training has caught on.
Wish us luck and send Sammy some blog family love!
Sunday, July 16, 2017
Summer is here and that means we take every opportunity for family time- especially on the beach.
Once again, given the opportunity to be in our happy place, the place to me that cultivates all our milestones of stability and calmness. We were so blessed to spend Friday on the beach. Tehilla frolicked, skipped, ran away, built sand castles, buried Ron in sand, laughed and enjoyed.
It was a perfect day. We were just another carefree family soaking up the sun and enjoying the beautiful turquoise water. I wandered into the water and was reminded of all the times I've been there at different stages of our journey. All the times I've whispered prayers into the sea breeze, washed my tears away with the water, or held my baby in heart failure. But this time, it was only joy. Only prayers of thanks.
The only thing notable was how well Tehilla did in the heat. While she still overheats quicker than most, overall she is definitely getting stronger and handled the heat better than ever.
We thank G-d for every opportunity to enjoy family time and count our blessings. Thank G-d.
Tuesday, July 4, 2017
Yesterday on July 3rd marked your Heariversary, the anniversary of your most recent heart surgery. My Tehilla- my beautiful, strong, funny, remarkable, energetic Tehilla, I can't begin to explain to you what it means to be a year post-Fontan. You, my sweet darling, about who it was said would have poor quality of life, who had a 45% chance of making it over the age of 5, you who never shy away of throwing frightening complications into the mix- you have made it to a year post-Fontan.
There are whole days, my sweetheart, whole days that go by that I completely forget. There are days that go by that I don't worry. In fact, just the other day, your Abba and I were discussing if you even needed a medical shadow next year in public preschool, since you are so completely stable (please don't let the municipality or Bituach Leumi be reading this!). In the end, we will be requesting it, just as a safety net. But to think after all that you've been through, after all the miracles that have happened for you, that we would- that we could- feel this good about your health and stability...It's mind-blowing.
We spent the day today having ice cream with grandparents and splashing around in a little pool outside. We couldn't have asked for a more happy and peaceful day. We couldn't bless G-d more, for the amazing miracles and blessings that have come our way and the feeling of thanks for each and every day.
Tehilla, you are a song of Praise to G-d. Every skip in your step, every note of "Let it go" that you sing repeatedly, every pink item that you carefully curate in your wardrobe- everything about you makes up the great miraculous song of Praise to G-d.
Happy Heartiversary, sweet Tehilla.
Sunday, June 18, 2017
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
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
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
I'm a big believer in mental health awareness and I believe strongly that the taboo surrounding these mental illnesses are harmful and outdated.
Wednesday, May 10, 2017
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.
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
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, 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!