Thursday, July 31, 2014
Tehilla is now definitely saying "Mama". Mechal and I are fairly sure that she's calling me. She also started saying, "Oooooh." As I mentioned in a recent blog post, when Tehilla is standing up and holding on, she likes to look down at her feet and laugh and then stand back up again. Mechal caught it on camera, today.
Tuesday, July 29, 2014
Tehilla had her third HBV and her third DTaP + IPV + HIB. We also were assigned a new nurse, that I am very happy about. She is much more knowledgeable and actually understood quite a bit in Tehilla's medical file.
Tehilla weighs 7.400 kg and is 65 cm tall. Her head circumference is 41.7. Tehilla is once again in the 3rd percentile for her weight and height. That's pretty much where Tehilla likes to hangout on the chart. It seems funny, given how "pleasantly plump" Tehilla is, but even with all her "butterball fat", she is still smaller than 97% of babies her age.
Sunday, July 27, 2014
Like every family in Israel, there is a significant amount of stress and anxiety with the war going on. At this point, our hearts and prayers are with the citizens and soldiers of Israel and all of the wounded.
Something interesting to note, for those that wrongfully accuse Israel of being an apartheid state: Tehilla's surgeon, Dr. Erez does about 170 surgeries per year. Of those surgeries, about 100 of them are for children with a CHD from surrounding Arab countries.
Monday, July 21, 2014
Tehilla has started saying "Emma". At first, I thought she was trying to say "Ima" and was extremely excited. But I quickly have learned that "Emma" means more food. Last night, I made a new dinner, which our whole family including Tehilla was ecstatic about. As soon as her high chair was empty from food, she screamed, "Emma! Emma!" I apologized and immediately put more food on her tray. She started laughing and screaming "Yay", then stuffed it in her mouth, and started making "mmm mmmm mmm" noises, kind of like Cookie Monster does.
She is also very impatiently trying to learn how to crawl forwards. She can go backwards and sideways. Mechal and Tzviel try helping her, by putting cookies just out of reach or giving crawling demonstrations repeatedly. She stays in the crawling position and tries rocking or nodding her head back and forth. After a few minutes, she usually screeches in frustration, and then tries again.
She loves us standing her up and holding her. She bends down, looks at her feet and then laughs. Stands straight up, bends to look at her feet, then laughs and sits down. When she is standing, she also can not figure out how to propel herself forward. So she rocks herself back and forth.
Tuesday, July 15, 2014
Tehilla has a double ear infection. She was prescribed a different medicine this time.
In response to the future comments:
Yes, the doctor and I are aware this is happening too frequently.
No, it is not at the point of taking any more steps.
Yes, we haven't slept in days.
We are hopeful that throughout the summer she won't get any more colds and her ear canal will develop more, so that this cycle will stop.
For now, we will be more proactive when we see her getting a cold with saline drops, humidifiers, and even onions...
Friday, July 11, 2014
We've spoken to the kids, each at their own level, about the situation. They all had different reactions. Tzviel's reaction was that he grabbed Ron's phone, turned it on and said, "Hi Galaxy. Search pictures of rockets. Coooooool!" Mechal's reaction was more subdued and she just wanted to understand that we are safe and G-d is protecting us.
Tehilla, on the other hand, was not too pleased with Hamas...
Shabbat Shalom to you and yours and may Israel have a restful Shabbat!
Sunday, July 6, 2014
We had the date for Tehilla's heart catheter changed to August 10th, to avoid Tisha B'Av. (http://en.wikipedia.org/wiki/Tisha_B%27Av). Let's hope this date brings us only good news.
Other than that, Tehilla is doing well. She is crawling in all directions except frontwards.
Wednesday, July 2, 2014
The area that is in the circle, is the area that the surgeon can see, when he opens Tehilla's chest. That is the part that is narrow. If in fact, the images that we saw today on the echo are accurate, then we can go ahead with Tehilla's Glenn surgery, because the surgeon can put a patch on the narrow part of the pulmonary arteries to enlarge them.
Because imaging through an echo is limited, the only way to know for sure, is to do a heart catheter. So, in a month, we will do a heart catheter and be able to get more accurage images, as well as proper sizing and numbers to know for sure, if she can have the Glenn. If so, they will try to schedule her for the Glenn, as soon as possible.
We are scheduled for the heart catheter on Sunday, August 3rd and will be there for minimally 3 days.
I ask of all of you, to please pray that the heart catheter shows us that Tehilla is Glennable.
Tuesday, July 1, 2014
I was asked to write something about our two older kids, Mechal and Tzviel. So, here you go:
Mechal will be eight in September. Mechal is a very bright and expressive kid, with an extremely creative side. For her, this journey started when she overheard a conversation between Ron and I, when I was only 8 weeks pregnant. Ron had asked me to hand him some fish from the freezer and I, instantly gagged, and said, "Ron, I'm pregnant! I can't. Oh, I'm going to be sick." I turned around to make a dash towards the toilet and ran smack into Mechal, with a look of astonishment splashed across her face.
"You are, Ima?!?" And then she gave me a huge hug.
She, now, proudly says, "I always pay attention to when grownups are talking. That's how you find out everything." She's got one foot into preteenhood.
Mechal: I know that Tehilla is special and that means you will always give her more attention than me and Tzviel.
Me: You and Tzviel are both extremely special in different ways. So, is Tehilla, and not just because she has a special heart. I need you to understand something very important. Please look at me, when I say this. I love you with my whole heart. I love Tzviel with my whole heart. And I love Tehilla with my whole heart. Every time that I have had a baby, it is like I have grown another heart to love that kid with. Do you understand me? Tehilla has a special heart, but I will give all of you, all of my attention. What I need you to understand is, sometimes there will be emergencies. Sometimes, something may be wrong. If that happens, I will make sure that you and Tzviel are taken care of, but I will give all of my attention to Tehilla.
Mechal: That sounds fair, Ima.
Seven going on 21, that one is. She adores Tehilla and loves to play with her and hold her. This experience has matured her and made her more sensitive. She loves to hear about all of the other heart families that I am in touch with.
Tzviel. People that know Tzviel, will know that I am NOT just being a proud mother, when I describe Tzviel. Tzviel is by far the funniest and sharpest kid, that I know. He says things that crack us up and is very witty for a child that is only four and a half. He...You won't believe me, unless I copy an example of Tzviel-isms.
This was from when Tzviel was 3.5:
Tzviel put a card through the window and asked me to get it out.
Me: I don't think I can get it right now, I'm in middle of something.
Tzviel: I bet a hammer could get it.
Me: What? No. No. No. I'll get it.
Tzviel: Don't worry, I'll get the hammer.
Me: Look, I'm going to get it out. Just give me a minute. Okay, I've got it.
Tzviel: Next time we try a hammer, k?
Me: Next time we never use the hammer, okay?
Tzviel: I bet a hammer can get lots of stuff...
He calls pajamas that he wears on Friday night "Shabbamas." It consists of pajamas with a tie clipped on.
This journey has been hard on him. He had to get used to me being gone for nearly a month, by Tehilla's birth, and my frequent abscences. Sometimes, he would go to sleep, and wake up to find out that I had gone to the ER with Tehilla and was still there. He had to get used to a lot of instability. Thank G-d, things have been fairly smooth sailing since Tehilla's last surgery. This has really helped Tzviel.
He woves (loves) Tehilla so much. Sometimes a bit too much, so we always have a watchful eye on him. He doesn't fully comprehend the entire scope of the situation, he just knows it as the "new normal."
Good night, and may tomorrow only bring happy news for everyone!