Thursday, January 29, 2015

Physical Therapy Evaluation

Today, Tehilla had an evaluation for physical therapy at Hitpatchut Hayeled (Child Development). We met with a very nice and thorough physical therapist. While I ran through Tehilla's long medical history, Tehilla explored their therapy room.

One thing that you need to know about Israel's special education and special needs facilities and treatments, are that they are extraordinary and beyond affordable thanks to socialized medicine. We walked into their offices and were greeted by vibrant and exciting wall features. These features had mirrors and strands of large beads, and things to pull, poke and feel around. Tehilla instantly wanted to jump out of the stroller and play around. The therapy rooms are full of playmats, ball pits, ramps, stairs, monkey bars and closets full of toys.

I spoke with the physical therapist for awhile about why we felt Tehilla should be evaluated and what concerns we had. The therapist took a great deal of time to understand Tehilla's diagnosis. The first thing that she asked me, after the medical history, before beginning the evaluation was "Is she afraid of strangers? How will she react to me?" I found that really remarkable for her to acknowledge and inquire about. I explained to her that Tehilla has a lot of fears and about her blood pressure. She asked me to participate in the session.

She brought out various toys that tested her gross and fine motor skills, and watched Tehilla communicate and move around. One of the toys that she played with Tehilla was a shape sorting toy. She took a ball out and gave it to Tehilla to put back in the bin. Tehilla did it several times. Then she took the ball and put it in the bin and put the shape sorting cover on, to watch if Tehilla could take the cover off. Tehilla did, and then the therapist took it from Tehilla and put it back inside the bin with the cover. Again, Tehilla opened the bin and took it out. When the therapist took the ball from Tehilla again and put it in the bin, Tehilla stopped and looked up at the woman and gave her a super annoyed look that definitely was meant to say, "What's your problem, lady?" It was pretty funny.

Later she wanted to see Tehilla walk along the wall and the floor length mirror. She moved Tehilla's magnets away to get her to come towards them. Tehilla was offended and looked at me and started crying.

Tehilla did very well. The physical therapist said that she is very pleased with Tehilla's development. She said that she is on track for development, but on the lower end of the spectrum. This is completely expected given the 3 surgeries, 3 heart catheters and various other hospital stays that she has been through. She said that she is not concerned about Tehilla, at all.

That being said, she would like to monitor Tehilla's development and have sessions with her, but on a very reduced schedule. She wants to see her again in 3 weeks. She just wants to watch Tehilla's development and give her a little bit of a push in the right direction. She gave us two specific activities that she would like us to practice at home.

All in all, it was a great appointment!

I'm not sure if I've spent enough blog space (is there ever enough?) expressing my thanks to G-d, for all the blessings that He has brought into our lives and all of the good that he has done for Tehilla. We have so much to be thankful for, and this is just another one of those things. At the end of the day, our little Tehilla with her half a heart, is alive, and well. Not just well, but progressing, developing and doing exactly what a baby her age should be doing. We are lucky to see the hand of G-d through our daughter and have the ability to praise Him. Thank you, G-d, for our three healthy thriving children.

Tuesday, January 27, 2015

Princess Personality

Tehilla is finally sleeping through the night again. It seems that her ear infection had finally cleared up. Being a heart kid, she has been taking daily medication since birth. She is so used to it, that at the sight of a syringe, she opens her mouth and waits. We forget how unusual it is to see a kid that is so medication savvy. She is willing to suck her medicine out of the syringe.

This morning, as I was taking out her morning medications, I said out loud to her, "Okay, Tehilla. We have Enalapril, Carvedilol...and Moxypen." When she heard Moxypen, she said, "Mmmmm." She's not wrong, it's strawberry banana flavored, but it was still funny to hear, and amazing that she understood. And sure enough, after I gave her the syringe of Moxypen, she smacked her lips and said, "Mmmm. Umm umm umm."

We have suddenly and magically weaned Tehilla off of her pacifier. It really was her own initiative, as she hid every single one of her pacifiers and we can't find any of them. So, we gave it a try and without even a tear, she is now taking naps and going to sleep without a pacifier. When Mechal and Tzviel were babies, we took their pacifiers away when they were much younger. With Tehilla, we did not want to do that until after she had her Glenn surgery.

Tehilla is definitely a fan of pretty things, and often likes to put headbands and hats on her head. This past Shabbat morning, I was trying to get our home ready for lunch guests, and Tehilla was being very fussy. When I went to get dressed, she wouldn't let me put her down and was just in a bad mood. With time running out, I plunked her down on my bed, and she cried hysterically. Feeling stressed, I reached for a pearl bracelet and handed it to her. She instantly stopped crying, and turned it around and around looking at it and said, "Ooooooh. Wow!" I took it and put it on her hand and she laughed and clapped her hand. It kept her busy for a few minutes and she started whining again- so I took out another pearl bracelet and put it on her other hand. One more bracelet later, and Tehilla was all happy and content and kept looking at her pretty jewelry and pointing and saying, "Ooooh!"

We received a Hanukkah package from my aunt and uncle that had been lost in the mail. Tehilla has not stopped playing with her "doggy" and carries it around our home and shows it to everyone. She loves when we press the buttons and it sings. She claps her hands and starts babble singing. It's super cute, and I will try to get a video of her singing. Thank you Aunt Lesley and Uncle Lou!







Friday, January 23, 2015

On the Mend

Tehilla is definitely on the mend. She slept pretty decently last night, only waking up once.

She is babbling and trying to say many words and often imitating us. She still has not made any attempts to let go and walk.

She has started taking a special interest in her dolls and loves to snuggle, hug and kiss them.

Shabbat Shalom from our family to yours.



Thursday, January 22, 2015

RSV Shot and Ear Infection

The past few nights, Tehilla has been miserable. We thought it was because she is finally getting that fourth bottom tooth in (She has her molars in, her top teeth, but still not that tooth or her incisors).

Yesterday, I took her for her RSV shot. They only offer it at this one clinic all the way in the neighborhood of  Pisgat Ze'ev. For us, that's the complete other side of the city. The entire way there, Tehilla cried. She was whiny while we waited our turn with the nurse, and kept pulling on her left ear. After she got her RSV shots (It's divided into two shots, which she gets in each leg, because of her size), she was inconsolable. The nurse would not allow us to leave until she saw that Tehilla had calmed down. After a half an hour of Tehilla still crying, I told the nurse that I thought Tehilla was getting an ear infection and that we would be going to see a doctor anyways. She allowed us to leave and we got Tehilla the only available appointment late at night.

And sure enough, she has a pretty bad ear infection in her left ear.

I'm sure many parents can relate to nights like this. I guess the silver lining is none of this was heart related. This is how last night went: Around 12:00 am, Tzviel comes running in, screaming that there is a bee in his room. When we did not respond immediately, he climbed up onto our bed and started jumping by the foot of our bed, "Bee! Bee! There's a bee in my room! Aaaaaah!"

I quickly grabbed him and shushed him. "There's no bee. We've been through this. There are no bees in winter time. We have screens on our windows and our windows are closed because it's winter. Please, please, please, please, PLEASE go to sleep."

"Oh, Ima, I love you. Let's snuggle."

So, he lay down next to me. Every few seconds he stroked my face. Then every few minutes, he would say something like, "Do you think the bee is gone?" "I really hate bees." "Why did Hashem (G-d) make bees?"

After 10 minutes, I carried him out of our room and gave him the option of sleeping on the couch or in his room with the lights on. He chose the couch.

About 12:30 am, he started screaming that he was getting leg cramps...Ron got up with him again at 1:00 am.

There was quiet until 4:30 am, when Tehilla woke up. We gave her a drink of water and gave her more Tylenol. Tzviel heard her screaming and said, "Telulu? You're awake! Oh, hello!" We had to make him be quiet, but Tehilla wouldn't stop screaming. She would quiet down if we held her, but it would only last a few minutes.

Then Mechal screamed, "Oh my G-d! Why is this family so noisy?!? You're all waking me up." We had to shush her and make her go back to sleep.

Well, Tehilla never went back to sleep, and Tzviel probably didn't either. This morning, Ron and I were both completely disoriented. Tzviel said to me, "Ima, you look mad." I told him, "I'm tired. You did not let me sleep last night. Neither did Tehilla. I'm very tired and frustrated." To which he said, "Oh, I'm so sorry, Ima. I love you so much. Should we snuggle?" I gave him a kiss and kicked him out the door to school.

And now, I'm going to nap...

Monday, January 19, 2015

Ordered

Thank you to everyone that offered to help and tried to help make connections for us to get the blood pressure monitor. 

It has been ordered and we will have it by next week!

Thank you, Yaakov and Cena!

The Good, The Not-As-Good, and The Medication

I'm going to split this blog post up with the information and discussions, according to the appointments we had. We had an appointment and echo with Dr. Golander, our cardiologist first and then an appointment with Dr. Erez, our surgeon second.

Dr. Golander Appointment

The moment that we walked into the pediatric cardiology department, our smiley, rambunctious, mischievous and very happy Tehilla changed. Whoever says, "Ehhh, she's just a baby. She'll get over it. She won't remember a thing." has no idea what they are talking about. She immediately dropped her smile, opened her eyes very very wide and was extremely serious. Nothing made her smile, no matter our numerous attempts. She was terrified.

We had weighed her at home, which was a good thing, because there always is a huge discrepancy between all of the scales in the hospital. At home, she weighed 8.6 kg (18.92 lbs). The scale they weighed her on said, 9 kg, and after weighing her again on a different scale later on, she weighed 8.6 kg. This is why we purchased a new scale- to keep a consistent method of monitoring her weight.

Her saturation was 85! Exactly where we want it to be for post-Glenn.

Her blood pressure was through the roof, extremely high. They tested and retested it over and over, on different limbs, with different cuffs. Her blood pressure is extraordinarily high.

Then we did her echo. I was sure that Tehilla would not cooperate at all, but with the help of Elmo's World, she lay completely still and allowed them to do her echo from start to finish, even the parts on her neck which are pretty uncomfortable.

The first thing that Dr. Golander said is that her pulmonary arteries are doing great! The patch that they put on during her surgery is doing well and everything looks fantastic!

Next, Dr. Golander studied the images of her heart functionality. Still not good. There has been no change since her previous echo, 5 weeks ago. She is still in heart failure.

However, because we already know about her blood pressure, we know that this is the cause. Meaning, in the glimmer of positivity, we understand the cause of her reduced heart function. Her blood pressure is extremely high. Knowing the cause of the reduced heart function, determines, that if we can get her blood pressure under control, it is reasonable to believe that her heart function will get better. To get her blood pressure under control, we need more medication.

The Enalapril has not been helping.  So, Dr. Golander is adding Carvedilol- a medication given for heart failure.

Often, when I speak to newly diagnosed heart parents, I express to them how important their input is to their child's care and how important advocating is. It usually does not take too long for these heart parents to find their voice and understand what I am talking about.

Dr. Golander had first mentioned that there were many different medications that he could try. He initially wanted to start her on a different medication. He told us that it would have a side effect of slightly sedating her. This is when I spoke up and said, that if there were different options, we should try those. We are trying to get Tehilla active and are soon taking her for an evaluation for physical therapy. I don't think that a medication that would sedate her, would help her progress. Our cardiologist completely agreed and chose Carvedilol. We start her on a lower dose and every two weeks, the dose increases slightly.

We also discussed that Tehilla was clearly very stressed in the hospital and seeing our cardiologist and that it was very important that we monitor her blood pressure at home. We have been unsuccessful at finding a pediatric blood pressure monitor here in Israel, that is available to be purchased privately.

I'm going to utilize this blog to help us, since we need this immediately. I need to order this blood pressure monitor from the US. If anyone reading this blog is coming to Israel or knows someone that is coming in the next week or so, please email us at: tehillasheart@gmail.com. We will have it sent to you and pick it up from wherever you are staying in Israel. Thanks in advance!

Overall, Dr. Golander was happy with what he saw. I told him about what happened with her blood tests and the Potassium test and that it needed to be done through the neck. After all that, he said, "I really don't need those test results. Forget it." I am really happy that we do not need to give her the blood test from her neck.

He wants to see her again in a month and we will do another echo.


Dr. Erez Appointment
We saw our nurse, Yifat. The moment that Tehilla saw her, her fears subsided and she smiled the biggest smile. She loves Yifat and clearly it goes both ways. Tehilla and Yifat pranced around giggling and snuggling. She really is an exceptional nurse!

Yifat retook her blood pressure and it still was extremely high. We then saw Dr. Erez, our surgeon. He was very happy to see Tehilla playing and smiling and screeching to play with his stethoscope. He examined the images from her echo and looked at her recorded vitals.

We told him what Dr. Golander had said and about the new medication. He said that from the images, he would consider her heart failure to be mild (YAY!!!) and he expects that with the medication change, her blood pressure will go down and her heart functionality will go up.

He then said, that truthfully, he is amazed and in a weird way happy to see that she is capable of such high blood pressure. What he meant by that is, the fact that her heart could pump such an extremely high blood pressure, meant that is was doing really well. It means that once we get her blood pressure down, her heart will be working great! I have to say, that Ron and I breathed a big sigh of relief from hearing such a positive spin.

He asked us if she was up to date on her vaccinations. We told him that she is behind and needs the MMRV, but hasn't gotten it because she was sick and hospitalized a few times and then had surgery. He said that we only had to wait 6 weeks post surgery. There is currently a chickenpox outbreak going on, which has us a bit worried. He said to get her the shot tomorrow, which is what we will do.

He then asked us if we had any questions, since we should not be seeing him again for about two years (WOW!). We talked to him about signs of heart failure and how we should assess them, now that she is not in interstage. He talked to us about understanding what to expect when she will get sick and to make sure to understand the reason behind different signs of heart failure.

He then brought up with us the importance to give her as normal of a life as possible. He suggested putting her in nursery at age 2. I'm not going to lie, my blood pressure probably sky rocketed at that point. We spoke in length with him about it and exposing her to different viruses which is sure to happen from putting her in school. He felt that it will be a good time, when she is 2 years old. He stressed not to keep her back in any way.

My instincts are to keep Tehilla within an arms length until she is 64 (please G-d), but Ron and I both know, that Dr. Erez is right. We have gotten her to the point where she will be doing very well, health wise and our next biggest obstacle is for us to let go (somewhat) and let her set her own limits. Again, this is exceptionally hard for us to fathom, but that's what we have been working towards- a great life for her. And it starts with nursery school...

So, my next step is to start doing FBI worthy checks into nurseries for next year. Yes, I do need to remind myself to breath while thinking about this. No, I have no idea how I will be able to let go. We will also be looking into Tehilla's rights into a medical shadow.

Deep breaths. Small steps...Breath in, breath out...






Thursday, January 15, 2015

Healing Nicely

After Tehilla's surgery, I had a very candid discussion with our family doctor and our cardiologist. I asked them both (separately), why Tehilla did not look her age.  Here is a picture of Tehilla before her surgery:




Before Tehilla's surgery, Tehilla looked like an 8 month old baby. Not the 14 month old baby that she was. Putting her lack of hair aside (it runs in the family), she did not look her age. She was also, as you know, very underweight and very short.

Both doctors agreed with me and they both separately explained that when a child like Tehilla is in heart failure for as long as she was, the body needs to respond. Her body had shut different development processes down in order to sustain her heart.

Our cardiologist felt sure that now that she had the Glenn surgery, the circulation in her heart would be doing better, and her entire body would start recovering. He predicted that about a month or two after the surgery, Tehilla would have a sudden "boom" in her development and weight gain. Her body would start healing itself and play catch up to everything that had been put on hold.

With extreme thanks to G-d, we are seeing that "boom". 





Tehilla is gaining weight steadily and nicely. Her body is not only chubbier and heavier, but is more developed to a baby that is 15 months old. Her face has started maturing more, as well. I have not taken her to be measured, but I can see that she has had a growth spurt.

She now says that monkeys say, "Ooooh" and says "wannthis" (Want this). The past few days she has had many long babbling monologues and it really sounds like she is trying to say words that we just don't understand.

Her body is healing. Thank G-d.

Put My Foot Down

I had a bit of a frustrating morning advocating for Tehilla and it didn't really end positively.

If you remember, Tehilla was having high blood pressure, so as a precautionary measure, her cardiologist requested that we check her kidneys to make sure there wasn't anything going on. We were supposed to take her for a lot of blood tests to check her kidney function and to take her for two different kinds of ultrasounds.

The ultrasounds can only be done at a hospital because of the kind of test that was requested. The earliest appointment is next month, so we are waiting for that.

The blood tests we took care of right away. We took her to our local clinic and had her blood drawn. Most of her results came back completely fine and within the normal ranges. However there was a problem with two results due to the Potassium test that was done. I know an awful lot about hearts, but in this area, I'm not as fluent. What I know is that the test was not successfully done, because of something to do with Tehilla's tiny and very difficult veins.

Our doctor sent us to redo the test. The lab technician that we went to, was the same as the first blood test and he happens to be excellent. I have watched Tehilla have well over 200 IVs and blood tests done, and I will call myself an expert in knowing when someone is good at drawing Tehilla's blood. She has incredible challenging veins and often "expert" doctors are requested to come to draw her blood and are still unsuccessful. It results in her being poked somewhere between 5-8 times. It's horrible and traumatic for her.

Anways, back to my story...we went back to this lab technician that I consider to be excellent- and the reason I think he is excellent, is that he is usually successful on the first or second try.

I explained to him what happened and why we had to redo the test. He told me that he would redo it, but he also explained that if again, the test was unsuccessful, then we had no choice but to do the blood test through her jugular vein- her neck. He told me that a doctor would have to do it.

Her blood test was unsuccessful and the lab technician called me personally, as soon as he got the results (which he clearly had been monitoring) to tell me that we had to do the test through Tehilla's neck and to call our doctor.

I spoke with our doctor who agreed that the test must be done through her jugular vein and that I had to go to the main branch of our health insurance in Jerusalem to have it done.

I called the clinic to find out when a doctor would be present, and already on the phone, the person I spoke to, was adamant that Tehilla could have the blood test done through her arm and I don't know what I'm talking about. I stopped the conversation and said, "I'm not interested in arguing with you. My daughter has a severe heart problem. This is what my doctor requested. Just tell me when a doctor will be there." She gave me the information and we went this morning to have it done.

It was a disaster from beginning to end. As soon as I walked up to the person in charge and explained why I was there, she started arguing with me. I quickly responded, "My daughter was born with half a heart. She is here for an important blood test. Her doctor requested this. Do not argue with me." I was sent right in.

Then the next person argued with me. Then the doctor was called to come. Then I argued with him. He was more compassionate and calm, than everyone else- understanding that I was not there to cause a scene, but only because my daughter needed an urgent blood test done. But still, he refused to do it through her neck. He felt it would be dangerous and that the clinic was not set up like an ER in case anything happened. I feel pretty secure in saying, I think that it was a big overreaction on his part.

They called another doctor who does do blood draws through the neck and he couldn't come. The lab manager came in and started shouting at me, that I was being unreasonable, even though I explained that she had this test done twice and it wasn't successful. Another lab technician started shouting at me and demanding that I allow them do the test through her arm. I was completely out of patience at that point and said, "I'm not going to explain myself again. This is what my doctor requested."

So, she called my doctor.

Here is the reason that I absolutely adore our doctor. The minute that I was passed the phone, after she yelled at my doctor, he said, "Are you okay? I'm so sorry that you are going through all this." He then spoke it over with me and we agreed that doing the blood test through her arm and expecting a different result was crazy and wrong to put Tehilla through that. Especially when we both knew that she would be poked many times.

I suggested that since next week we have our long awaited cardiology and surgical follow-up appointments that I speak to our cardiologist and if he still feels the test is necessary then we find a way for them to do the test there. Our doctor agreed.

When I passed the phone back, I was shouted at more. I explained that we weren't doing the test with them and we would do it in the hospital. The woman told me that I was foolish and that she was an expert. I just walked away without responding to her.

An added note, throughout these screaming matches, Tehilla kept offering everyone her wafers and smiling at them like crazy. They kept pausing from screaming to gush over how cute she was. Then they would go back to screaming.


If you've read all the way to the end, I made myself a cup of coffee when I got home and taking some time to rest. In other news, Tehilla is cuter than ever and doing great. I'll post a cute picture of her later.

Monday, January 12, 2015

Miss Personality



Tehilla is really starting to gain weight. She feels chunky and chubby. Your fat thoughts have been working! She is now 8.6 kg (18.92 lbs).  She still has not let go of the furniture to take steps on her own. She is too scared.

However, a different, adorably naughty side of her personality is coming out. Earlier today, I was folding some laundry on the couch. She walked up to my nicely folded laundry piles, pointed at them and said, "This?" I said, "This is laundry. Clean clothes that Ima is folding." She then grabbed some of the clothes and quickly shuffled away, giggling as she "ran" and hid in the kitchen. I turned to her and said, "Hey! That wasn't nice! You ruined my laundry pile!" She laughed and laughed. 

When I went back to folding the laundry again, she creeped up next to me. I said, "Tehilla...I see you. Don't even think about it." So she grabbed a whole pile of laundry and dumped it on the floor. Then she quickly scooted away and hid in the kitchen again.

After that, I was doing some work, when I saw that she had found Mechal's water bottle and had managed to open it and was drinking from it. I told her that she could. The next moment, I heard splashing noises and turned to see her vigorously shaking the bottle upside down. I said, "Hey! What are you doing!" She started laughing and shaking the bottle even harder- trying to get the water out even faster.

I'm sure pretty soon, I won't find this funny, but for now, it keeps us laughing.

Friday, January 9, 2015

Snowy Shabbat


Just about the time that we were taking a "Shabbat Shalom to You" picture...


It finally started to really snow, here in Jerusalem. Three days after the forecast, that snowstorm finally reached us. We were so excited! 


We decided to get bundled up in coats and hats, and go outside to enjoy the snow. It turns out, Tehilla did not like having the snow falling in her face.


Everyone else had a wonderful time, playing, dancing and catching the snow on their tongues.


As it turns out, Tehilla much preferred to watch everyone out the windows. 


Shabbat Shalom to all of you!



Thursday, January 8, 2015

With Love To You

This blog has been the most unexpected blessing. It has brought about such good into the world, that I am astounded. Our family is truly blessed, and in more ways than one. Ron and I have so many things to be thankful to G-d for: A home, each other, 3 beautiful children and so much more...Not many people can honestly say that they believe a miracle happened on their behalf. We can. And actually, so can all of you. Tehilla is your Tehilla too, and you asked G-d that her surgery go miraculously well, against all odds- and it did.  We are also thankful, for all of you. Our blog family.

I doubt I need to describe in detail the emotions that a mother and father feel, after handing over their one year old daughter to a surgeon, believing with every cell of their body that G-d is in control, praying with every breath and utterance from their mouth, but ultimately aware with every nano-second, that they may not see their daughter again. We sat for 8 hours. 8 very excruciating long hours- not knowing what G-d would make happen in that operating room.

During those hours, we experience more love and support than anyone can possibly hope for. Our phones would not stop buzzing and beeping- with outpouring messages, notifications, emails...etc. When people talk of kindness- true kindness, they speak of doing an act of good, with the recipient's complete needs in mind. That is what you all did. You filled every minute of those 8 hours with messages of love, support, kindness, consideration, strength, prayers and friendship. You literally held us up.

Your pictures of you wearing red brought smiles to our faces. Smiles. Do you understand that we were smiling, while our daughter's fate was unknown? Because of you.

I didn't forget to post them, but I needed some time to gather all the pictures together and make a collage. I admit, I definitely may have missed a few pictures (I am so so sorry), but from the outpouring of messages and emails, I actually couldn't keep up. I tried to find all of them. So, if you didn't make it into this collage, it's not because your picture was ignored. It helped in the most amazing act of kindness. We truly love all of you.









Standing By Herself

It's a blurry picture, but it's the only hard evidence that I have of her standing by herself. She will do it for up to a minute and then realize she has no intention of taking some steps, so she'll sit down.





It seems Tehilla may be teething again. The only time she was happy today, was when I put Elmo on for her to watch and when I gave her a lollipop. That's right- a lollipop. Because teething does not bring out the best parenting. 


Tuesday, January 6, 2015

Close to Walking

Tehilla is really getting ready to let go and walk. She walks along the couch and every now and then, forgets to hold on for a few steps.

Here she is and she wants to push her new "baby" stroller, but she's too scared to let go of the wall. So she turned herself around and leaned her back against the wall and then pushed her baby stroller back and forth.

I tried walking with her and getting her to let go. She stood by herself for a second and then started shrieking.



Sunday, January 4, 2015

Sweet Dreams for Kids

Today, we received a very wonderful package in the mail. A few weeks back, I had been contacted by a wonderful woman named Wendy. Wendy wrote to me after finding our blog and wanted to connect with me. She herself, has a young daughter who is a cancer survivor. Her family started an organization called "Sweet Dreams for Kids".

This is what Sweet Dreams for Kids is about:

"We have started this organization as a family. Our dream is for all kids in the hospital to have cute, cozy,and comfortable new pajamas. Our youngest child, who is our little walking miracle, was born with cancer. We saw her in hospital pajamas too many times. This is the reason we have started Sweet Dreams for Kids. We want to give back to others and this is the lesson we are trying to teach: when you give to others you will become happier."

They collect new pajamas and give them out to thousands of hospitalized children and their families. After Wendy read our story, she wanted to send Tehilla and Mechal and Tzviel, pajamas. We just received them in the mail today and my kids were not only thrilled to receive them, but incredibly moved by Wendy's daughter's story and the organization that their family has built. 

Please go to the organization's website: http://www.sweetdreamsforkids.org/ or their Facebook page over here to learn more about this amazing initiative and how you can get involved!








Saturday, January 3, 2015

Happy Parties

Friday morning, we began our day at a very loved little boy's brit milah of some very special friends in Ramat Beit Shemesh. It was wonderful to be able to take part in their special occasion. We got to see a lot of family, many friends and even some fans who immediately came up to me and said, "I'm sorry, but I think I've been following your baby on a blog? Is that possible?" Hi Blog Family!

We were all so happy to be out and about and only when one kid coughed near us, was I reminded of the past 15 months. So, we just nonchalantly moved across the room. These smiles are genuine and I love this picture of us.



Then, we raced back home and put the final touches together for Tzviel's pirate themed 5th birthday party. This was the cake, that I made on Thursday for the party.


It was a fantastic party and even more so, it was so amazing to once again fill our home with our friends and family. We enjoyed ourselves so much. I thought that I would be so anxious having so many kids around Tehilla and having such a big group of people in our home. I couldn't have been more wrong. It was the most healing feeling in the world. It felt like a giant huge weight was lifted off my shoulders and I felt myself relaxing so much. It was so therapeutic to be surrounded by our loved ones, celebrating our kid's birthday the way we always have. Welcome back to our lives, Normalcy!

Tehilla stole Tzviel's pirate hat and actually put it on herself. She seems to really like hats and headbands. 



She also learned a new trick. Yes, yes, I know that it is along the same line as her other tricks, but it's pretty darn cute!

*The videos I post, do not seem to work on phones. Just computers.

  video


Here's our birthday boy. He was too shy at his party to let me catch a picture of him, but tonight he let me take a picture of him. Here's Tzviel in his natural state. And yes, his pajamas are not only backwards, but inside out. It wouldn't be fun any other way, would it?