Thursday, January 19, 2017

100 Percent

I've got some good news to share! We got our letter back from Bituach Leumi (Social Security) and Tehilla was evaluated at 100% disability again! Thank G-d! It sounds crazy to be happy about such a thing but it allows Tehilla to receive many benefits both short and long term. Whew! Glad that is over.

Also, our porch is completed! Construction is over and we can enjoy calm again! Well, until we take our neighbor to rabbinical court.

Here is a picture of our little monkey, enjoying riding around outside with Mechal. 

Sunday, January 15, 2017

Busying Business

Whew...so many things to update on.

For starters, Tehilla had her speech evaluation. I really wish when people designed these concepts they first and foremost remembered that it involves a small child and that most small children are shy or afraid of strangers- but even more so, our small child.

Tehilla was uncooperative. She didn't say a single word until the last 10 minutes of an evaluation that took an hour and a half. So...She did however point to the pictures and display good cognitive skills for her age level. But that wasn't what we were there to assess. No one has ever questioned her cognitive skills. Tehilla spoke a little bit at the end, so at least she saw her speak- but she in no way saw any of the indications that Tehilla still has challenges with her speech. Which is extremely unhelpful. I'm assuming the speech therapist will write that Tehilla was uncooperative and therefore she couldn't evaluate her properly.

Many people offered advice and help, so I'm going to see what else can be done to help Tehilla get admitted to Gan Safa (Language Development Preschool).

Other than that, we are going through a very challenging and difficult situation with the construction on our porch. We have learned a very hard lesson about how ugly people can be and not to underestimate people's ability to take advantage of you- especially a neighbor. The construction aspect of our porch should be finishing this week. Unfortunately, we will be taking this neighbor to our local rabbinical court.

This whole situation has been very stressful. One of my dear friends lovingly criticized me and said, "I don't understand. You have the strongest Momma Bear side to you. I mean, everything with Tehilla...and THIS is pushing you over the edge?" I explained to her that my greatest struggle is confrontation. I can sit and read medical journals, and watch my daughter's heart beat while her chest is open. But I can't wrap my head around people intentionally harming another. I hate fighting and tension. But life can't always be sitting on a beach and snuggling your kids... So with G-d's help, we will resolve this situation and hopefully have the courage to handle this.

Other than that- I leave for London in 2 weeks! This week, I am researching myself. Seriously. I'm going back over the blog since the beginning and compiling our story, so I can write my speech that I will be giving on 5 university campuses in England. I can't believe that I'm giving a speaking tour, but if it can help raise awareness, I'm all in.

If any of our blog family members want to help- I'd like to hear from you about what parts of our heart journey stand out to you. It's very hard to be objective about your own life. So feel free to comment or email me: tehillasheart@gmail.com.

Here's to a stress free week for all of us!

Sunday, January 8, 2017

Please Pray for our Friend

I wish I could tell you that the heart world pauses for more convenient times. I wish I could tell you that in our heart world, I don't read about another heart warrior gaining his wings and losing his fight every single day. I wish that heart kids weren't in need of desperate prayers each and every day because of a surgery or because of contracting a dangerous virus. I wish.

I wouldn't be able to be where I am, without the midnight messages to my heart friends or the whatsapp voice messages we leave each other. I would be lost without my heart mamas who give us a sense of normal and a community to lean on.

I have dedicated this blog to Tehilla and to her journey and the twists and turns that her life brings along with it. It is very infrequently that I post about other heart warriors. The heart warriors who I pray for every night or when I light Shabbat candles. The ones whose successes and challenges feel so deeply rooted to us.

But there is a little boy that needs a complete miracle. He did not recover well from his Glenn surgery and has been on Ecmo for 4 weeks. Ecmo is a a double edged sword. It can be a last resort move that the doctors use to help the heart and lungs have some time to heal. But it also brings risks and bad news.

Yitzchok is 10 months old and in desperate need of a miracle. His family is asking that people do mitzvot on his behalf. Yitzchok ben Aydla Malka. Please have him in your prayers and do acts of kindness on his behalf.

Here is the link to the Facebook page that has been set up for him:

https://www.facebook.com/Do-It-For-Yitzchok-219906685118192/

Thursday, January 5, 2017

New Schooling Attempts


This picture is from yesterday, when Tehilla crashed after having a really tough time keeping us all awake from 3:00am and on. Still blessed and grateful...

We are turning down an interesting new path for schooling. It will require a collective finger crossing of our blog family and prayers always help. After some really good advice from a few people, we are applying for Tehilla to go to Gan Safa- Language Development Preschool (that's the best translation I can think of). It is a preschool that has a much smaller teacher to child ratio, has regular speech therapists, occupational therapists and other professionals on site daily. They personalize an educational program per kid and help them to advance in all areas needed and later integrate. It falls under the umbrella of special education.

With Tehilla's previous diagnosis of Apraxia of Speech, her development delays along the way, and her heart condition, she should be able to qualify. She will be going for a few evaluations to assess her eligibility. There are many little areas where Tehilla would really benefit from this kind of program. But it is difficult to get in. So, blog family, this is one of the more minor things that I've asked for prayers, but nevertheless it is for her benefit and to help her thrive.

Here's to hoping!

Wednesday, January 4, 2017

Day In Day Out


Chanukah was absolutely wonderful. It was filled with family and friends, too many sufganiyot (donuts), some serious sevivon (draidel/top) gambling, and a lot of wonderful memories. Here is Tehilla enjoying some of her presents from us and family. Every holiday just reminds me how blessed we are to be together as a family. Thank G-d.

Tehilla has been off and on sick for the past week or so with viruses. We are keeping a close eye on her, but she is pushing through and her body is fighting strong. It seems ridiculous, but it's a major win to see that her body can take these illnesses. Tehilla is doing wonderfully.

We are narrowing down our selection for a school for next year. It is very stressful, but we may have found a very good municipality run school that we are happy with. We are also applying for a medical shadow for Tehilla. It's amazing on this heart journey, that there are always new things to learn. This is a whole new area which we have yet to learn about.




I posted this on Facebook, but it deserves to be put on here, as well:

Often in life, difficult situations come up that leave us frustrated and complicate our daily lives. We don't often get a chance to get a glimpse at the master plan and understand why things happen. I'm not claiming in any way to have G-dly insight, but from my limited perspective I'd like to share how our 2017 is starting.

The past 3 weeks we have had sewage bursting into our home because of a crushed building sewage pipe. We have had teams of plumbers, sewage trucks and professionals out assessing the situation. Our family has been sick with serious stomach issues because of it. And it has led to a lot of tension with neighbors. 

Construction began on Thursday. The pipe was under our patio. As the team cut into the flooring and started removing the concrete a horrible discovery was made: our patio was on the verge of collapse. The previous owners had the patio installed incorrectly and all it would take was one heavy snowfall for it all to come crashing down.

We were not prepared by any means to have to completely demolish our patio and pay for an entire new foundation and patio to be put in. The stress of this sudden construction job is overwhelming.
But I thank G-d whole heartedly that we have had to endure all of this to make this discovery. When I think of the alternative of what could have happened had our kids been playing outside in the forecasted snowfalls of the winter...I'm amazed at the kindness that He has given us. Thank You, G-d, for protecting us.

And so, this is what 2017 is starting out looking like. Grateful. Completely grateful.


Sunday, December 25, 2016

Chanukah Night 1

Chanukah is one of my favorite holidays!

Here we go- Chanukah Night 1!



Thursday, December 22, 2016

Miracles Everywhere



 This journey that we are on fills our life with days of extreme contrasts. There are days that are so normal, so perfectly ordinary, that one could forget. We don't- but we could. Then there are days that we are reminded of how fragile our daughter's life is, and they are anything but ordinary. We often have to go from one adrenaline rushed moment to the next, with often just a few seconds in between.

A great example of this would be last night. Tehilla was all tucked into bed and should have been sleeping. Instead she was reading books and wrapping all of her little dollies in blankets. I was downstairs working, when I heard her little high pitch voice shout down, "Ima, come! Come here, Ima! I don't feel well. My chest hurts." Is bolted the right word? Maybe "ran like a lunatic, taking three stairs at a time" is more precise...

In any event, I achieved a world record of heart palpitations and speed racing and rushed into her room and calmly said, "Your chest hurts? Where? Show me."

To which she pointed to her lower stomach. "Your tummy? That's your tummy. Does your tummy hurt or your chest?"

She giggled and said, "Oh yeah! My tummy. Silly, Lulu. Not my chest! My tummy!"

Breath in. Breath out. Breath in. Breath out. Let heart rate return to normal. Stop mentally preparing a hospital bag. Deep breaths.

"So, your tummy hurts. Is it because you ate your sufganiya (donut) too fast? Or because you took some of Tzviel's candy from his birthday baggy?"

This juxtaposition is our normal and is probably what made me so teary eyed at Tehilla's school Chanukah party. There she was- in her floofy yellow dress that she insists on wearing constantly, with her little black shoes with kitties on them, singing songs with her friends about miracles. Our healthy little miracle singing about miracles.

Thank G-d for our little sweet miracle.






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