There really is no better remedy for a hard day, than looking at a miracle smiling back at you! Thank G-d!
Wednesday, December 23, 2015
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.
Sunday, December 20, 2015
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.
Tuesday, December 15, 2015
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.
Monday, December 14, 2015
Enjoy some pictures!
Tuesday, December 8, 2015
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.
Sunday, December 6, 2015
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!
Thursday, December 3, 2015
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.