Tuesday, April 28, 2015

We're Home

We're home and as you can see we both had a hard night. Tehilla has already gone to nap and I am going to do the same.

Terrible Night

We had an awful night with a screaming infant roommate. Tehilla woke up for the day at 4:00 am,  so I actually did not sleep more than a half an hour.  A huge cup of coffee is soothing my headache. 

The doctor already checked her and declared her healthy. Of course, he asked to see her walk and she fell and bumped her head. The doctor joked, "Uh- another 24 hours!"

In a very hushed but deadly voice I said, "You saw nothing!" He laughed and said not to worry.  We're going home.

What has been nice is bumping into many nurses and doctors that have treated her when she was sick. They love seeing her healthy, developing and rambunctious.

Monday, April 27, 2015

No Sleep

We are refusing to sleep. Not in our crib nor in our stroller. 

Toddlers

Toddlers don't do too well with confinement.  She's running around everywhere and freaking out when I pull her away from the quarantined rooms.

I finally got her to play in the playroom.

3rd Floor

We are in our room on the 3rd room. They have made sure to pair us with someone non-contagious. Tehilla finally fell asleep for her morning nap (It's nearly 4:00pm).

I can't believe that her fall led us to being admitted, but how can I complain about them taking extra precautions for Tehilla's benefit?  A day lost but at least she is okay. 

I'll wake her soon so she sleeps tonight.

Admitted

Tehilla has been thoroughly checked and they believe that she is completely fine.  She has been hamming it up for all the doctors, nurses, students, residents and volunteers.  However,  the protocol is that because aspirin can exasperate bleeding,  she needs to be under observation for 24 hours.

We are being admitted. 

Misbehaving and Waiting

We are a non-priority case because Tehilla is completely fine and shows no sign of any concussion or bleeding. We have been placed in a back curtain, which is more than fine by me. Keep us away from all the sickies. 

However, Tehilla freaked out as soon as we walked into the ER. I guess some memories just don't go away. In the picture she is crying because she was told "No!", when she smacked the nurse.

We are waiting for a doctor to come see us.

Heading to ER

Tehilla flung herself backwards off of my bed and fell head first. She cried for a few minutes and then calmed down. I called our nurse and our doctor who both said that because she is on aspirin she is more susceptible to a brain bled and she has to go immediately to the ER to get checked out.

So...here we go.

Sunday, April 26, 2015

Speech Therapy Appointment

This morning, Tehilla had her first speech therapy appointment with Ilana. Ilana evaluated her and will continue the evaluation next week. So far, there have not been any serious red flags. She wants Tehilla to go for a thorough hearing test to rule out any hearing problems.

Tehilla loved the appointment and was happy to participate. Ilana is working on incorporating signing into enunciating sounds with an association of an action or request. Tehilla loved it and was very cooperative. I'm so happy that we took the initiative to start speech therapy with her. Tehilla immediately began to work with Ilana. We left with such a positive feeling.

Thursday, April 23, 2015

Yom Ha'atzmaut Fun

Yom Ha'atzmaut is Israel's Independence Day. Usually it is spent outdoors barbecuing and touring the beautiful country. This year, the weather forecast of rain, hail, strong winds and very cold temperatures had people indoors and disappointed. 

We had a last minute idea, that if everyone was going to be indoors and bored, we should invite friends over. So we invited some friends over and had an amazing Yom Ha'atzmaut breakfast with blueberry pancakes, chocolate pancakes, french toast, waffles, omelets, and chocolate pudding. Not only was it delicious, but a genius idea and one we will be making into a tradition. This way we all could spend the morning together and then go to family or other barbecues later.

Which is exactly what we did. We went to a barbecue with family later in the afternoon. 

We also enjoyed making blue and white cookies. We all had a fantastic day and the kids have exhausted themselves out.

I hope you all had a wonderful holiday,  as well.

Monday, April 20, 2015

Long Overdue Thank Yous

There are a few thank yous that I have been meaning to write about, but unfortunately are several months overdue.

The first one goes to my brother, Chaim on completing mesechet megillah and making a siyum in Tehilla's merit before her surgery. Thank you!



The second one goes to Cayle Hasson and family. Cayle wrote to me after Tehilla's last surgery, with concerns that with all of the chaos of Tehilla's surgery, that maybe we had not had time to get Hanukkah gifts for our kids and wanted to send us gifts. I had, in fact, purchased everything for Hanukkah a month in advance. Despite that, Cayle insisted on sending my kids a care package. My children were beyond overjoyed by the books and crafts that the Hasson family sent. It meant so much to us. Thank you!





And lastly, a big thank you goes to Rabbi Baruch Gopin and MTA Yeshiva University High School. They are still learning and praying in the merit that Tehilla has continued health. My family members have been stopped by their students and have been told about the ongoing project. Apparently, Tehilla's pictures hang throughout YU campus. Thank you to each one of you. I'm glad that Tehilla has been an inspiration to you, but honestly, I think our family has gained tremendously from all that you have done.

Naughty Toddler

Well, it's only 1:20 pm, and these are the naughty things that Tehilla has done:

- Opened a cupboard, ripped open a pack of rice cakes, and then smashed each rice cake. Then she rolled over each of them, to optimize the crumb size and how fast it could spread. Laughing the whole time, and giggling hysterically when I reprimanded her. 
- Took a bowl of pretzels and "ran" (waddled quickly) throughout the house throwing pretzels in each room, while laughing.
- Has figured out where Mechal and Tzviel keep the art supplies, and proceeded to empty the drawers of all crayons, markers, oil pastels, pencil crayons.
- Then colored on her doll.
- Then stuck a bunch of markers under the oven- all while laughing.
- Found where we keep the toilet paper and took a roll. Then like a puppy, she unraveled a good amount and started shredding it and spreading it all over my room.
- Drank a puddle of dirty water on our balcony.


Here's the naughty little toddler...



Friday, April 17, 2015

Dancing

Enjoy this video of Tehilla dancing! I have half a mind to send this video to Dr. Big Nose and ask him to redefine his meaning of quality of life.

video

Wednesday, April 15, 2015

Reduced Heart Function

We just got back home from our appointment with our cardiologist, Dr. Golander. Tehilla woke up for the "day" at 2:00 am, and did not get a chance to nap before her appointment, so she was in a foul mood. For a young toddler to cooperate during an echo and appointment, not to mention having vitals taken, is already pushing it. So, Tehilla was not having any of it today. She scowled at the echo technician, and all of the cardiologists. When Dr. Golander said hi and held out his hand for a high-five, she gave him the look of death and then burst into tears. Sigh...It was not an easy appointment.

But Elmo's World saved the day, and after I put it on for her and moved it around, so they could do the echo on her neck and chest, she was content. Although, she did attack the echo wand a few times.

Dr. Golander smiled from ear to ear, when I told him about all of the naughty and rambunctious "terrible two" behavior Tehilla has been up to. He said to her, "Fantastic! You have my full permission to keep acting like this!" But then after seeing my facial expression, he said, "Um...until you turn three. Then it's time to stop."

The echo showed that she has had some reduced heart function since our last visit, two months ago. The pressures in her heart have not changed, and her blood pressure is fine- although I need to start monitoring it more routinely. However, her function is down. Tehilla will be restarting Digoxin. Digoxin is not our favorite medication, because of it's toxicity, but it could be a lot worse. So we'll thank G-d and be content that that is the only thing changing. It does mean, that Tehilla needs a blood test in two weeks to check the toxicity level in her body and make sure that she is okay.

Dr. Golander was curious about Tehilla's development with walking. He loved seeing her walk around. He was trying to understand if her limitations are based on her heart function or on her development delays due to her medical history. I told him that since she has only really been walking for 5 weeks and she seems to be getting faster and out of breath less often, I think it's too soon to evaluate that. He was happy with that answer.

He doesn't need to see us for 3 months!

Tuesday, April 14, 2015

Where's Your

Lately, we all- as in our entire family, including Tehilla, have been pretty frustrated with Tehilla's speech. She is definitely very delayed and is not making the kind of progress that we were hoping that she would be making at this point.

We have decided to be a little more proactive in helping her. Tehilla will be starting speech therapy with our wonderful speech therapist, Ilana Herskovitz, who not only has helped our other kids, but is part of our blog family. Hi Ilana!

As well, our whole family is learning Baby Sign Language, in an effort to take the pressure off of speaking and get rid of the frustration we are all experiencing, especially Tehilla. Last night, Mechal and I learned 10 signs and I have already started using them with Tehilla.

To my complete amazement, Tehilla immediately picked up two of the signs. She has started doing the sign for "milk" which for her is her fat smoothie, and she is signing "more".  Thank you to my fellow heart mama and dear friend, Elisheva, for the idea and advice!

Here is a cute video of Tehilla. Enjoy!

video

Monday, April 13, 2015

Lip-tie Procedure

I just scheduled Tehilla's procedure to have her lip-tie cut. It will be on May 18th at our home-away-from-home, our hospital, Hadassah Ein Kerem.

It is a very simple procedure. It's funny how my stomach just formed a knot for something so little.

We have a cardiology appointment on Wednesday. Fingers crossed that there is nothing but good news.

Sunday, April 12, 2015

Gobbling

I don't think I've ever seen her gobble food that fast. Yup, she missed her pasta!

Saturday, April 11, 2015

Back to Bread

We had a very nice time at the zoo on Wednesday morning. It was an extremely hot day so we had to worry that Tehilla was drinking enough.

Tehilla was beyond excited to see all the animals up close. She would giggle at each new exhibit.  She waved at the kangaroos, said hi to the elephants, and tried touching the fish. We will definitely go back there soon with her.

The rest of the holiday was very nice filled with lots of food. Tehilla was really not a fan of matzah. She is a total bread and pasta girl. I will be ready with a camera tomorrow night when I make tuna casserole for dinner.

Tuesday, April 7, 2015

Pesach

I have not had a chance to update the blog since pre-Pesach madness- which was actually very organized and completely calm.

Thank G-d, our Pesach seder was really wonderful with close friends and family.  It was our first year hosting the seder and it was unbelievable.  We sang and joked and gave the kids gummies for their participation.  Tehilla was asleep before we even began.  There was enough food for an additional 10 people and everything was delicious.

Our first day of Chol Hamoed we went to Cinema City and saw Paddington, then we had a picnic in Gan Sacher. 

Yesterday, we went to Nitsanim Beach near Ashkelon. The weather was a bit colder, but that didn't stop us from swimming, digging holes in the sand to China (where do people dig holes to on the beaches of China???), playing Frisbee and having a great time. 

Tehilla was terrified of the water, but we wouldn't even try to put her in. The water was too cold and she would not have been able to handle it. She enjoyed digging her toes into the sand, eating matzah and dancing to karaoke music someone else was playing loudly.

We went to the Ben & Jerry's Ice Cream Factory and got sundaes.

Mechal immediately developed a severe swimmer's ear infection that proceeded to get worse as we made our way home. We ended up having to take her to Emergency Care at 3:00 am. They put anesthetics in her ear and she finally stopped screeching.  This morning, she saw our doctor and is on prescription ear drops.

None of us got any sleep last night,  so today we did not go out anywhere except the local park.

Tomorrow we are planning on going to the Jerusalem Biblical Zoo. It will be Tehilla's first time and I can't wait to see her reactions to all the animals.  I hope to get many pictures.

Chag Sameach!

Wednesday, April 1, 2015

More Vaccinations

Tehilla had more catch up vaccinations today. We went to the Well Baby clinic. She weighs 9.780 km and went up in height to 74 cm. She is actually on the percentile graph! She's in the 2nd percentile!

Tehilla received her DTaP and Hepatitis A vaccines today. She still has more Vaccinations to catch up on. We have another appointment right after Pesach.