Saturday, June 27, 2015

Sinusitis

We ran to the doctor early Friday afternoon.  Tehilla had a fever with a cough and was pulling on her ear. We were supposed to see the doctor on call but when our regular doctor finished all of his appointments and saw us sitting in the waiting room, he told the secretary that he would see us. Even though his family was waiting in the waiting room to go home. Dr. S is a one of a kind doctor and we just adore him and the quality of care he gives us.

What's more important is that when he said to Tehilla, "Okay, Gorgeous. Let's go. It's your turn." She slid off the chair and ran directly into his office. I handed her the health card which she handed to him with a giant smile. 

He checked her thoroughly and determined that she has a sinus infection. He prescribed her medicine and she is already much better. 

Here's to a good week for all, blog family!

Thursday, June 25, 2015

Keep It Up

Toddlers cry because they finished the chocolate and have no more. Tehilla is adorably ridiculous.

Today, I was asked, not for the first time, if Tehilla still needs prayers said for her. Tehilla is still in heart failure.  It's easy to forget with how great she is doing.  The truth is that her medication keeps her stable and running around like a little monkey. We are very blessed. G-d has blessed our doctors with the knowledge to keep our little girl happy and rambunctious. So, yes, she still needs prayers to keep her healthy and well.  Her next cardiology appointment is next month.

Tuesday, June 23, 2015

Hadassah Magazine Article

A number of months ago, I was contacted by a woman named Wendy Elliman. She is a writer for Hadassah Magazine. She was writing an article on Hadassah Ein Kerem's PICU and was specifically focusing on pediatric cardiac patients. Our surgeon suggested that she give me a call.

I spoke with Wendy a few times and we discussed Tehilla and our experiences. My grandmother called me to tell me that she was surprised and happy to see an article about Tehilla in her Hadassah Magazine. The article just came out this month.

I have to say, that I was very happy to participate. For me, every opportunity to raise awareness about congenital heart defect is an opportunity to gain support, help educate, and attract attention for medical funding and research.

Here is a link to read the article online:

http://www.hadassahmagazine.org/2015/06/18/big-love-for-small-patients/

Enjoy!

Friday, June 19, 2015

First Shoes

We bought Tehilla her first pair of shoes! She keeps looking down at her feet and clapping and getting excited!

On Track

It's late at night here, but I couldn't go to sleep without sharing my happiness with our blog family. Today, Tehilla had her follow-up appointment with her physical therapist at the Child Development Center (Hitpatchut Hayeled). That appointment could not have gone any better.

Our appointment started with Tehilla running into the therapy room and immediately playing with all the toys that she could get her hands on. She was in a very good, playful mood and she was extremely cooperative. I updated our physical therapist on Tehilla's well-being, and on how I felt Tehilla was doing in terms of physical development. She observed Tehilla and was absolutely amazed by how far Tehilla has come. She ran and scooted all over the place, running up and down inclines and declines, stepping over items, crouched and steadied herself beautifully.

While I was talking with her, the previous speech therapist that we had chatted with last time, came to see us. I updated her on Tehilla's diagnosis of Childhood Apraxia of Speech. I explained to her that our concerns grew after we saw a serious regression in Tehilla's speech, joined with watching her grapple to move her mouth to immitate, and that when asked to say something she could not immitate or repeat, but without thinking or planning, she could make the sounds. I explained in length what we had observed at home and this speech therapist conclusively agreed with Tehilla's diagnosis. She wanted to hear about how Ilana was working with her and was beyond elated to hear that Tehilla is making progress every session. She reiterated how serious CAS can be and was astounded to hear the progress that Tehilla has been making.

She told me that usually, she would push for us to do speech therapy through the Child Development Center, but hearing how successfully things are going and that Tehilla has developed such a wonderful working relationship with Ilana, she absolutely wants her to continue with Ilana. She stressed that if we needed anything, we are welcome to call her.

Our physical therapist then told me that she had examined and observed Tehilla enough. She said that Tehilla has pushed forward so much, that she is now on track for her age and her development. She feels that she is doing so well, that there is no need for her to continue routine follow-ups. She did say, that Tehilla's file will remain open, and that if I have any concerns whatsoever, to call them and they'll see her immediately.

Then the two therapists discussed Tehilla's next step in evaluation. I began to discuss with them some thoughts Ron and I have been having in terms of Tehilla and schooling. Because of Tehilla's speech disorder, we have been thinking and planning ahead. We realize that it will not be possible for Tehilla to go to a regular gan (nursery) at age 3, with the speech difficulties that she has. While we hope, pray and expect that there will be a huge improvement by next year, it is very likely that she will still struggle to communicate. I explained to the therapists that our hopes are that she can go to a speech oriented special education gan. These gans are extremely sought after because they take very few children and are given the most amazing therapists and teachers to help them daily.

The therapists were amazed that we have been thinking about this and absolutely agreed. They felt strongly that she should be entitled to this kind of specialty gan and said that they were going to align their thinking and actions to help us and make sure that she gets the placement. Because of this, they are scheduling Tehilla for an all-inclusive evaluation, where she will be evaluated by a doctor, physical therapist, occupational therapist and speech therapist at the same time. They will do this evaluation in 6 months, which is perfect scheduling for us then to apply for these special gans with their help and receive approval with their help.

Then the physical therapist gave us permission to buy Tehilla her first pair of shoes. I turned to Tehilla and told her we were going to get new shoes and she started giggling and clapping and saying, "Wow!"

It was a fantastic appointment and we are, once again, very blessed to be surrounded by wonderful professionals who are so willing and happy to help.

Tuesday, June 16, 2015

Nothing More Than Normal

Tehilla has started waking up at crazy hours again- probably because of some teething. Last week, I brought her to the doctor, just to check that her ears were clear. We weighed Tehilla and discovered that she had lost some weight. While it could just be due to normal toddler activeness and maybe, no-hopefully, a growth spurt...because it's Tehilla it needs to be watched. So we are scheduled to go back and have her weighed in a month to make sure.

Other than that, Tehilla is making progress, every week, in speech therapy. We work hard all week, to reinforce what Ilana has taught her, and she is being forced to say "up, in, on, M-sound, S-sound, B-sound, N-sound". She has also started to say "no" on her own. These are all positive steps, and while they are small steps, we are moving in the right direction. She also learned to say "Lana" for Ilana.

She also loves singing and motioning along to "Row, Row, Row Your Boat", "The Itsy Bitsy Spider" and "Round and Round". In this video, she is motioning along to Mechal singing "Round and Round." If you know the song, then you'll see that she gets excited and goes ahead of the song.

Enjoy the miraculous cuteness!





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Monday, June 8, 2015

Being A Normal Toddler

Tehilla is thank G-d, doing well.  She is making nice progress in speech therapy. She does something very cute. Ilana prompts her mouth and face, to show her how to make sounds. So Tehilla immitates her and prompts herself while making the sounds. I'll try to get a video of her doing it next week. We are still waiting for approval to move to three sessions a week.

Next week, we have our follow up appointment at physical therapy. Tehilla is now walking very steadily and running as fast as her little feet can take her- which thankfully is not that fast! She demands to walk wherever we go, and often tries to scoot off. She does not get out of breath anymore and can handle a slight uphill walk. We are waiting to get the green light from her physical therapist that she has corrected her walking, in order to buy her first pair of shoes.

Other than that, she is an active and very silly toddler. She loves playing with her doll stroller and a dollhouse. She plays in the toy kitchen and brings us cups to take pretend sips out of. She also loves to wrestle Tzviel, and pull Mechal's hair. She loves to knock over anything that Mechal and Tzviel have worked hard to build, and steal Mechal's headbands right out of her hair and stick it on her own head. Thankfully, she always gives them a very naughty mischievous smile, like the one in the picture below, and they find her so cute, they usually just chase her and tickle her.







Monday, June 1, 2015

Speech Therapy

Yesterday, Tehilla had speech therapy. I was sick, so Ron took Tehilla. Ilana has been working on vowel sounds with Tehilla. Ilana took a video and sent it to me. You can see her prompting her mouth and face to help her coordinate how to make the sound. Enjoy!

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