Friday, May 29, 2015

Half-Hearted Cuteness

Tehilla caused a bit of a scene in a shoe store the other day. But a cute scene. It's not her fault, really. It's just that there were too many sparkly stilleto shoes to take off the shelf and try to get her teeny tiny foot into. I thought the store clerks would be upset, but they thought it was so funny, they brought her some more shoes to try on. Diva heart warrior princess!

I also took some videos of her being all around cute. It's such a nice breath of fresh air to write normal toddlerhood posts. She hammed it up for the camera and even showed some of her signing. Here are the videos:

Tuesday, May 26, 2015

Pink Nails

Tehilla has repeatedly asked for nail polish. Today she found the nail polish and selected neon pink. After a 15 minute temper tantrum, I actually had no idea why I was fighting it. So Tehilla got her first nail polish on her toes. She keeps looking down at her toes and saying, "Whoa!" "Wow!"

Now she is trying to find Mechal to show her.

Tuesday, May 19, 2015

Favorite Photo

I walked into Tzviel's room and immediately snapped this picture. This may be my favorite photo to date. Enjoy!

Monday, May 18, 2015

Procedure Not Happening

So...After a long 3 hours of waiting to see the doctor, Tehilla is not having the procedure.

I'm going to preface my explanation by saying: I would never want Tehilla or any of my kids to have unnecessary surgery.

The doctor checked Tehilla and explained that the upper lip is not used as much for speech. He checked Tehilla's dexterity and saw that it was good. He watched her talk and play and saw that her movement was limited. He felt strongly that it was unlikely that it would cause any problems with the clarity of her speech in the future.

He did say that such a lip tie could cause problems with her adult teeth growing in and leaving a significant gap. However, since her baby teeth grew in with almost no gap, he thinks it's unlikely.

I argued with him because I felt that we are working so hard on Tehilla speaking and to leave even a slight chance that in the end she would not talk clearly, seems ridiculous. It would be very hard to reverse unclear speech in the future once she is already talking.

He argued back that he wouldn't do this "surgery" on his daughter or son. I kinda chuckled and said, "This is a teeny tiny itty bitty procedure."

The doctor was not swayed and stands strongly in his opinion that Tehilla will have clear speech and not have a huge gap in her front teeth. He is the head of the department, so I have no choice but to put my faith in his expertise and hope that he is right. I still wish he had just cut the lip tie.

Lip-Tie Procedure Day

We are on our way to Hadassah Ein Kerem. Tehilla is having her lip-tie cut this morning. Our appointment is for 9:30 am. I'll update soon.

Friday, May 15, 2015

Shabbat Shalom

I thought I would post another happy post from our little heart home. We are all doing well. Mechal has completely recovered from her car accident two weeks ago. Much to her disappointment, she can once again do her homework.

Tehilla is doing well. She has learned to combine signs together, such as "more drink" or "give me more". She even combined three signs together. These are very positive advancements that are really helping us all to be less frustrated and to be able to communicate.  I will try to take a video next week of Tehilla signing.

Tzviel is still his same funny and awesome self.

Enjoy the picture of Tehilla face planting herself into a muffin. (Check out those rosy cheeks and normal colored nails!)

Shabbat Shalom, blog family. Thank G-d for happy and normal posts!

Tuesday, May 12, 2015

All Good

This morning, we took some time to relax outside and watch birds fly by and buses zoom by. Here are some long overdue pictures of Tehilla.

Sunday, May 10, 2015

Childhood Apraxia of Speech (CAS)

I learned when Mechal was only an infant to trust my motherly instinct. Mechal was 6 weeks old and something just wasn't right. The way she was spitting up was a little more projectile-ish and she was crying constantly. I took her to see our family doctor at the time. He looked her over and couldn't find any cause for my concern. He said to me, "I have learned through my experience that mothers often know best. If you tell me that you are concerned, I will order blood tests." I told him that I was concerned and he sent little Mechal for blood tests. We didn't get the blood tests back, before Mechal developed an extremely high fever. We took her immediately to the emergency room, where it was discovered that she had a urinary tract infection with E-coli. She had several tests including a spinal tap and was hospitalized for a week. Thank G-d, that story is well in the past, as she is now eight and a half.

In some ways, I am thankful for that experience, even though it was very difficult for me emotionally as a young mother. It gave me the confidence to listen to my inner voice.

Tehilla's speech was nagging at me. She is my third child. While Mechal was already speaking in full paragraphs at this age, Tzviel wasn't. He took his time learning to talk, but he made steady progress on his own timeline. So, when I was observing Tehilla, I knew something wasn't right. She wasn't moving forward. In many ways, she was moving backwards.

Now, of course, her medical history is pages long and like our family doctor said, "With her, expect things in  her development to take a little longer. She may need a little push of intervention to get there." But something was nagging me and after talking it over with a dear heart mom, I decided to take her to be evaluated by a speech therapist. I am so happy that I did that.

Today, Tehilla had her third appointment with our speech therapist, Ilana. Ilana has been evaluating Tehilla's overall development in speech from a development stand point, but also from a physical standpoint. The specific points that had been bothering me with Tehilla's speech were: she had dropped most of the words she had learned to say and never picked them up again, all of her words sound exactly the same and are only differentiated to us by her pointing, neurologically she seems advanced in her comprehension and ability to follow instructions, yet was not picking up new words. She is also eager to learn new signs and uses them, but is still not communicating through speech.

Ilana has observed her and has discovered that Tehilla has Childhood Apraxia of Speech (CAS). As I am just learning all about this, along with you, I will copy and paste the description from my online research:

"Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words."

Ilana had a long conversation with me explaining this in depth. She assured me that with intense treatment we will get Tehilla talking, but it would take a long time and we would need to be patient. We have submitted a request from our kuppat cholim (insurance provider) to allow Tehilla to get speech therapy three times a week.

At home, we are to move all of her toys and books up high where she can not reach them, so she will be forced to find a way to communicate with us what she wants. We also are to only put a little food on her plate, so she will have to ask for more. We also can't just give her what we know she wants, even though she will screech, but to force her to use her signs and sounds.

Ilana will work with her on specific sounds, and reinforce them by touching the area of her mouth that she needs to use. With G-d's help and a lot of work with our fantastic speech therapist, we'll get her talking.

Tuesday, May 5, 2015

Never Dull

I had fully intended on writing a post on Sunday, about how amazing Tehilla's speech therapy appointment went. I wanted to tell you all about how Tehilla is signing for three things and has started saying "more" and "ish" for fish and "oes" for toes. I would have tried to capture it on camera and posted it and told you about how much Tehilla adores Ilana, her speech therapist.

Instead, we spent the evening in Terem, an emergency medical center. Mechal was lightly hit by a car. She had been crossing the street, following closely behind Ron. The car swerved to avoid her, but hit her.

I realized that our family is no stranger to miracles. Tehilla is 19 months old and has survived three heart surgeries and has been beating the odds despite having half a heart. I get that. Most days, her miraculous life carries on in the most normal, yet naughty and rambunctious ways, and we have to remind ourselves of her story and praise G-d.

Mechal was examined and had x-rays done. Her doctor suspects that she has a hairline fracture in her elbow. I cannot even begin to explain how grateful we are to G-d that that is the extent of her injuries. She was able to return to school today.

We are truly blessed and not taking that for granted. On Thursday morning, Mechal will be reciting the blessing "HaGomel" in front of shul. It is a blessing that is said when someone has been saved from a life-threatening situation. They make a public proclamation of gratitude to G-d. 

Here is my public proclamation: Thank You, G-d, for my three children. For their lives, health and well-being. For their beautiful smiles and their sweet personalities. For the sunshine that they bring into our lives, but also for sleepless nights. Thank You for the challenges, that help us to appreciate and test our strength. Thank You for the gentle and not so gentle reminders to rake in our focus on the important things in life. Thank You.