Wednesday, September 20, 2017

Shana Tova!




Shana tova to you and all of your families! May this year bring joy and happiness to all of our lives and lots of time to enjoy it. We did a family photoshoot this summer, and these are the final photos. We are so blessed to be together and aren't taking a single moment of that for granted.

Sending our love to all of you!











Wednesday, September 13, 2017

Shadow Approved and Assigned!

It is absolutely amazing to me that when something needs to be taken care of, the right person can get the job done immediately. Yehudit in the municipality should be running the country- I'm just saying.

Well, the Ministry of Education gave the approval for Tehilla to receive a medical shadow full time. She will even have the shadow for the tzaharon (afternoon extended hours)! This morning I got the call that we received approval, and two hours later, our medical shadow called to introduce herself!

She came over this afternoon to start learning about Tehilla and what her job is. She seems very nice and very soft spoken. She has taken first-aid courses, but she will be sent by the municipality for a more in-depth course.

May her job be completely boring!

Sunday, September 10, 2017

School Update and Doggy Woes

The update I expected to post was about how wonderful things were going for Tehilla at school. So, I'll start with that.



School is amazing. Tehilla loves school. Loves loves loves! After the first day of school, Tehilla said, "Can I go to big girl school every day?"
The teachers are overly paranoid about Tehilla. They came to me on Day 3 and said, " We let her go out to the play-yard and we made her drink every 5 minutes but she kept sweating and looked flushed. Maybe she shouldn't be allowed to play outside?"

I said, "It's 32 degrees outside. That's normal to sweat. She needs to drink but not that much. It's good you're paying attention."

The teacher asked that we all sit down and I explain to them in more detail how to care for her. We are doing that tonight.

Now for the crazy that went on this weekend. Tehilla, in general, is getting a lot better with Sammy. She is being more gentle and handling her better.  Over Shabbat, we had our first sleepover guests and it overwhelmed Sammy.
Shabbat afternoon, Sammy was hurt accidentally by a kid. She growled and went to lay down. Tehilla went up to her face and started bugging the heck out of her and grabbed Sammy's face. Sammy jumped up and bit Tehilla around her eye.

We immediately applied pressure, but because Tehilla takes aspirin, the bleeding carried on for over an hour. I finally called the on call doctor who immediately referred us to the ER.
While gathering a bag to take to the hospital, the bleeding stopped. We weighed Tehilla's trauma of the hospital against the situation and decided not to take her to the ER and to follow up after Shabbat with the doctor for antibiotics.
An hour later, Tehilla was playing outside and she tripped and hit her same eye on the light fixture. The cut opened and it started bleeding again. That was that- we were going to the ER, even though it stopped bleeding after a half hour.

We got there and the staff was wonderful. They understood right away to give Tehilla space and not trigger any trauma. They were playful and let me handle everything, including cleaning her wound.

They assessed and felt the cut was clotting nicely and didn't need glue or stitches. We showed them Sammy's up-to-date immunization records. She is one shot shy of being fully vaccinated. They wanted an eye specialist to double check her eye to make sure that there was no damage.
We waited hours for the eye specialist who was kind and wonderful but needed the do a full examination of her eyes. While putting drops in to dilate her pupils, Tehilla freaked out and he had to pull on her eyelid. The cut wripped open and blood went all over. We got that bleeding under control. Her eye exam was completed and thank G-d, her eyes were perfectly fine. We got home at 1:00 am.




I'm grateful that in Israel there are strict protocols for dogs. It's unfortunate that we were on the wrong side of things. We were told to report to the Ministry of Health, 8:00 am to insure that Tehilla is fully vaccinated.
We showed up and were asked where our dog was. We said that we weren't aware we had to bring her. The woman explained that because she is not a vaccinated dog, the dog had to be quarantined for 10 days and we would be charged 2000 nis. I simply said, "No."

They called for the doctor and I explained that Sammy is vaccinated and is getting her last shot this week. I explained why Sammy was provoked and is a puppy and this completely is not her behavior. I explained that the dog is a therapy dog for my other child and provides emotional assistance. That taking Samny away would cause extreme distress for my kid. And that this wasn't a stray dog and there was no real threat.

The doctor calmly listened while I went all Momma Dog and said, "I understand what you are saying and it makes sense. These are our protocols. What you are saying is you don't want to open a file and that you are taking full responsibility. That you will watch your dog for 10 days and if anything comes up you will immediately seek medical attention."

I said, "Yes. That is what I'm saying."
She said, "Okay. Delay her shot by 10 days." She then told the woman in charge that we refuse to file.

Tehilla is home resting after barely getting any sleep. She is totally fine and did not pause for a second to snuggle and squeeze Sammy. We had a long talk about giving Sammy space and we will be holding off on sleepover guests for some time.
Whew!

Friday, September 1, 2017

First Day of School

Ron and I are too happy for the first day of school. We have the stupidist smiles on our faces.

Tehilla started Kindergarten today! In a regular school! We don't have her medical shadow in place yet, and we aren't worried at all. Because she is entitled to it, we will get her a shadow, but the woman will be bored and helping the teachers with regular school stuff.

We were the first ones to arrive at school which gave me time to explain to one of the teachers about her heart. I explained that they had to watch that she doesn't dehydrate and that she can tire easily. To look for purple lips or nails or if anything looks off. And that a fall can make her bruise more severely. That she is totally fine and normal and needs to be treated as such.

I also prepared laminated cards for emergencies. It has all the details that a paramedic would need, with all her information and to take her to Hadassah Ein Kerem Hospital. One card remains in her backpack and the school has two to keep on the fridge and near the phone. May they be the biggest waste of time.

Tehilla was a bit nervous but immediately warmed up and jumped right in to coloring and exploring her school. She has a few friends from her previous school, which made her very happy. She is crazy happy with her Frozen backpack, Frozen lunchbox and Frozen water bottle. We also found Frozen school shoes, so she is happier than happy.

September 1, thank G-d!




Monday, August 21, 2017

No Limits



Hi Blog Family,

It's been some time since I really sat down to rifle through my thoughts and get them out on virtual paper. To be honest, this summer has had me struggling to keep my head above water, just in scheduling and trips with the kids and the hellish last weeks of August. This is a post I've been meaning to write for almost 2 weeks...

About two weeks ago, we took the kids to see an ice skating and acrobatics show. We were astounded by the skills, the stunts, and the pyrotechnics. The kids were blown away and couldn't stop talking about it. 

Tehilla was especially taken in by the aerial acrobatics! It truly was amazing. Mid show, she turns to me and says, "I want to do that, Mama. I can learn to do that?"

My initial response was a snicker and a "Yeah, right", as I envisioned our little heart warrior princess flying through the air, suspended by fabric, soaring above ice...

But then I looked into her big greenish blue eyes and watched her micro-expressions of awe and delight, the reflections of the colored lights dancing on her face and her lips curved into a smile of pure joy. And I said, "Yes. Yes you can. You can do anything and be anybody. Nothing can hold you back."

This little interaction really explains where my headspace has been. I spent so long fighting for her life. So much time spent on worry and fear. Now that we have reached this period of calm and stability, my job has changed to fighting for her to live life. 

The days of worry and fear are not behind us. We know that the future will bring many more periods of unrest and medical challenges. We aren't fooling ourselves. But while we have peace and calm, we will make sure that Tehilla has every opportunity to live her life to the fullest and with no limits. I'm not saying we are enrolling her in aerial acrobatics at age nearly four (wow!). But I'm saying we won't be holding her back. That little princess will be allowed to follow wherever her perfect half a heart leads her. 












Monday, August 14, 2017

Too Much Puppy Love

We were perfectly prepared for Sammy, the puppy.

Collars and name tags- check.
Leashes and dog crate- check.
Dog toys and water bowls- check.
Check if your 3.5 your old is a raving jealous overly excited madwoman who picks puppies up by the face...oops. Missed that one.

So Sammy settled in nicely but Tehilla got a serious case of "new baby/jealous sibling syndrome" and we have been scrambling ever since to help her adjust and give her attention and teach her not to smash puppies skulls. It's been fun. (That was the sound of my eyes rolling).

We have Sammy nearly housetrained and sharing a peaceful existence with Hunter the cat. She has learned come, sit, down, let go, look at me, dance, paw, and is making a lot of progress with stay, and leave it. She is sweet and affectionate, smart and playful and has been an amazing new addition to our family.

But hardly an hour goes by without someone screaming , "Tehilla! Don't pick the puppy up by her ear!" Or "Stop squashing the puppy!" We are making progress and teaching her how to properly handle the puppy. We will get her adjusted with time...

Tehilla has been put on an antihistamine because we think she has allergies and has had a dripping nose for over 6 months without any relief. So far there is improvement.

Otherwise everyone is surviving the summer and providing the perfect amount of crazy for us to be counting down the days until school starts.

Tuesday, July 25, 2017

Mine is Pink

When I came to pick Tehilla up from school yesterday,  her teacher said to me, "Something is not right with her.  Her color looks off to me and she is low energy. I couldn't find her pulse ox to check her, but something isn't right."

I looked at Tehilla, who was pale and had swelling in her forehead (something that happens to her when her oxygen dips, her eye was pink and she looked unwell. She looked down at the floor and whispered,  "I took it (the pulse ox) out of my bag. It's at home."

Of course all the batteries of all 3 of our pulse oximeters were dead, but once we found replacements, we checked and her oxygen was at 80. Her baseline is 85-90. It's not critical but it's not good. Her heart rate was 101, which is perfect. She had no fever, so I made her an appointment with the on-call doctor. We lucked out and got our favorite, aside for our regular doctor.

We walked into the doctor's office and she was calmer than she usually is. She didn't want to talk to her.  I explained why we were there. The doctor took out her pulse ox and said, "Let's take a look how your oxygen is now. Can you give me your finger? Do you have one of these at home?"

Tehilla offered her finger, smiled and said, "My pulse ox is pink. Yours is black."

The doctor laughed and said, "You are so lucky that you have a pink one. I need to find a pink one."

She checked Tehilla thoroughly and found nothing except a double eye infection. Her oxygen was at 84. Drops were prescribed and we were told just to keep a look out. This has happened quite a few times- a dip in her oxygen as a response to an infection and/or pain.

She's doing better today, but a bit off still. We will keep her home today and see how she does.

Friday, July 21, 2017

Sammy Balofsky!

We are welcoming to the family our 7 week old golden retriever puppy, Sammy! Sammy will be Tzviel's dog but an important part of our family.

With all that our family has been through, it has taken a big toll on everyone in our family. Some TLC from a very sweet, affectionate dog will provide some stability and animal therapy for years and years. 

We have been working on this for over 6 months and have everything ready. Tzviel and I have been watching dog training videos. He has been practicing on Hunter, Mechal's cat, with no luck.

Speaking of which, yes- Hunter is staying, no- we aren't worried. We consulted our vet and Hunter is comfortable around dogs in our home.

We are very excited for this new transition. For the next bunch of weeks, we will be limiting the guests into our home, until some basic training has caught on.

Wish us luck and send Sammy some blog family love!

Sunday, July 16, 2017

Beach Bum Fridays

Summer is here and that means we take every opportunity for family time- especially on the beach.

Once again, given the opportunity to be in our happy place, the place to me that cultivates all our milestones of stability and calmness. We were so blessed to spend Friday on the beach. Tehilla frolicked, skipped, ran away, built sand castles, buried Ron in sand, laughed and enjoyed.

It was a perfect day. We were just another carefree family soaking up the sun and enjoying the beautiful turquoise water. I wandered into the water and was reminded of all the times I've been there at different stages of our journey. All the times I've whispered prayers into the sea breeze, washed my tears away with the water, or held my baby in heart failure. But this time, it was only joy. Only prayers of thanks.

The only thing notable was how well Tehilla did in the heat. While she still overheats quicker than most, overall she is definitely getting stronger and handled the heat better than ever.

We thank G-d for every opportunity to enjoy family time and count our blessings. Thank G-d.

Tuesday, July 4, 2017

Happy Heartiversary!!!

Dear Tehilla,

Yesterday on July 3rd marked your Heariversary, the anniversary of your most recent heart surgery. My Tehilla- my beautiful, strong, funny, remarkable, energetic Tehilla, I can't begin to explain to you what it means to be a year post-Fontan. You, my sweet darling, about who it was said would have poor quality of life, who had a 45% chance of making it over the age of 5, you who never shy away of throwing frightening complications into the mix- you have made it to a year post-Fontan.

There are whole days, my sweetheart, whole days that go by that I completely forget. There are days that go by that I don't worry. In fact, just the other day, your Abba and I were discussing if you even needed a medical shadow next year in public preschool, since you are so completely stable (please don't let the municipality or Bituach Leumi be reading this!). In the end, we will be requesting it, just as a safety net. But to think after all that you've been through, after all the miracles that have happened for you, that we would- that we could- feel this good about your health and stability...It's mind-blowing.

We spent the day today having ice cream with grandparents and splashing around in a little pool outside. We couldn't have asked for a more happy and peaceful day. We couldn't bless G-d more, for the amazing miracles and blessings that have come our way and the feeling of thanks for each and every day.

Tehilla, you are a song of Praise to G-d. Every skip in your step, every note of "Let it go" that you sing repeatedly, every pink item that you carefully curate in your wardrobe- everything about you makes up the great miraculous song of Praise to G-d.

Happy Heartiversary, sweet Tehilla.

Love,
Ima









Sunday, June 18, 2017

Threenager

Okay, okay, okay! I'm sorry I haven't updated in 15 days! Does it make it better if I say all is great? If I say that days went by that I forgot that we are a heart family with a kid with a critical CHD, are we good?

Because 2 weeks went by without illness,  without fear or without worry. Tehilla is doing so well that she has taken on a whole new persona...

She is a threenager. She is demanding, outspoken, extremely naughty and fabulous in every way. She causes constant trouble, picks fights and has us wrapped around her finger.

We have also noticed a new side of Tehilla that stunned us.  Ron and I were sitting outside one Shabbat morning, drinking coffee and chatting before shul. Tzviel was sitting between us while we sat on the half wall of our garden. 

Tehilla comes running up, grabs Tzviel's hands and in the sweetest voice says, "Come Tzviel! Come with me!  Come inside with me."

Listening to her angelic voice, he follows her inside. As he walks in, she turns around and runs back and sits in his spot with a devilish smile...

We were completely shocked!

And with that, I leave you to enjoy more calm and peace. Thank g-d!

Saturday, June 3, 2017

Cherry Picking Festival

A part of Shavuot was spent worrying about Tehilla's health as she once again developed a runny nose and a very bad cough.  The past few months have been cough after cough. While her oxygen levels have been great, she has been having a hard time handling the constant respiratory troubles.

So Friday was one of those times when we focused on living in the present and loving family time. We let our kids miss school and we headed out early to the Cherry Picking Festival in Gush Etzion.

We had a great time picnicking, getting cotton candy, exploring the booths set up, and picking cherries. Despite getting there early, we had a hard time finding cherries. We searched and searched and finally made our way to the complete end of the orchard where we were rewarded with plentiful trees.

We had a blast and enjoying eating the picked cherries on Shabbat. We again were given the chance to examine our blessings and appreciate time together as a family.

Tuesday, May 30, 2017

Happy Shavuot!

Thank g-d, Tehilla has been doing very well. Rambunctious and trying her luck at bending all of the rules.

Her latest obsession is Frozen and ballet. She keeps twirling and spinning and asking if she can go to ballet classes "to be a real ballerina."

Happy Shavuot to all of our blog family!

Sunday, May 14, 2017

Let's Talk PTSD

I've been very candid on our family's journey with Hypoplastic Left Heart Syndrome.  Anything that is heart related and sometimes things that are not, I post on this blog. But there's an entirely other side to being a heart parent that I haven't been open about. That is the psychological aspect.

I'm a big believer in mental health awareness and I believe strongly that the taboo surrounding these mental illnesses are harmful and outdated.

It is important for me to talk about this side of our story- not just for the sake of being open and honest, but more importantly for the current and future heart families that read this blog. This part is too overlooked and needs to be known. I've had many heart parents open up to me about this part of their struggle and I want them all to know that they are not alone and how perfectly normal it is.

I'll explain by starting in the middle of it all. Last week, I was putting Tehilla to sleep. She has been particularly difficult at night times lately because she's at that frustrating stage where she can't decide if she needs her naps or not. So instead she refuses to sleep and has learned the skill set of procrastinating bedtime. I had sang our Shema bedtime songs and told her a made-up "Princess Tehilla" story and was lying down with her in bed.

She then asked me to sing her a song. A "Tehilla" Song. I told her that when she was a baby I used to rock her to sleep and sing her a Tehilla song. It's to the tune of Lullaby and Goodnight but the words are just "Tehilla" over and over again. It goes, "Tehilla Tehilla Tehililililila Tehilla Tehilla Tehililililila..." You get it. 

She asked me to sing it to her. So there we were sitting in her pink and polka-dotted room, on her pink blankets and I start to sing her the song. It was at the "Tehililililila" that my voice cracked and tears sprang to my eyes. I tried to blink them back and sing on, but instantly my mind took me back to the times when Tehilla was just an infant. I would rock my very purplish baby to sleep and wonder if she would make it through the night. I would softly cry while singing her this song, my heart praying and begging G-d for another day with my baby girl. 

I sang this song to her after surgeries, trying to soothe her pain and discomfort and again, softly crying and begging G-d for her health. 

I hadn't sang that song in two years and in that one instant, last week, I felt the complete weight of the stress and anxiety that we endured daily during her first 14 months of life hit me and I just desolved into uncontrollable sobs. 

The heart parents reading this are nodding their heads in agreement and I have now triggered their own PTSD.

These episodes of post traumatic stress disorder don't happen frequently anymore.

I used to love to cook and at one point had even enrolled in culinary school to become a pastry chef but changed my mind and became a graphic designer. The harder and more complicated the recipe, the more I relished in accomplishing it. But quickly after we brought Tehilla home for the first time, did I bitterly begin to despise cooking. It would be the time daily, when my hands and eyes would be busy, but my mind would begin to wander.

And wander it did. I thought about how much longer we had with Tehilla, if we would get a chance to celebrate a birthday with her, how we would cope without her, and how we would help our other two kids cope without her. Cooking quickly became anxiety attacks that I would blame on cut onions. Doesn't everyone have anxiety attacks from cutting onions? Our menus immediately changed to whatever I could cook within 10 min and that helped me avoid quiet time to think.

It's definitely a very positive sign for me personally that I no longer have anxiety attacks when cooking and I have begun to start cooking gourmet food again.

It's important for me to explain that I have PTSD and have been living with it since Tehilla's pregnancy. I am most definitely in a much better place right now, but every now and then something triggers it. You'd be hard pressed to find a heart family that doesn't suffer from PTSD.

This journey has changed every person in my family. I've put my family in the spotlight enough so I will give my kids the courtesy of not explaining in depth how this journey has harmed them. You can imagine what the instability of us running constantly to the ER or doctor without a moment's notice, sometimes in middle of the night, would do to two small children. None of us are the same as we were before.

We have learned to live in the moment and be extraordinarily appreciative for every blessed day that we have with each other. We live life to the fullest and are more outspoken. We have found parts of our personalities that we didn't know existed.

Our lives have changed for the better since we had Tehilla. She has taught us how to fully live. It just hasn't come without a hefty price for all of us.

Wednesday, May 10, 2017

Extremely Well

Tehilla gave Dr. Golander the silent treatment but at least she wasn't screaming and crying.

Her heart is doing extremely well and we will continue on with the exact same medications and dosages.

The pressures in her heart are still a little too high to close the fenestration (hole left for the bloods to mix). So we will just watch and wait.

Her blood pressure was fantastic which for her is a HUGE win! Her heart rate is great and so is her saturation!

A great appointment! We come back in 6 months.

Cardiology Appointment Today

Because of our trip to the US, Tehilla's cardiology appointment checkup was postponed. She is stable enough for this not to be a problem.

Driving to the hospital is practically a reflex at this point. No attention is needed for directions. It's second nature. To be honest, it means my head is flooded with thoughts and worries.

These appointments are so important but also bring with them an anxiety. The what-ifs take hold and I find myself whispering Psalms while driving.

I'm not the only one combating anxiety this morning. Tehilla heard she was going to the hospital for an appointment and her eyes went wide and she screeched "NO!".

So we have now had several conversations about this being a "friendly appointment" and not a scary one. They will only put funny feeling gel on her chest and take pictures of the inside of her heart to keep her healthy.

She panicked before her vitals were taken but calmed down for a nice blood pressure reading. She hopped off the chair and said, "That was friendly!"

Now we are waiting for our appointment. I reduced MY anxiety by not taking care of the insurance paperwork which without fail always gets messed up and sets us back by hours. I paid privately and will just apply for the refund. If this works out nicely, then this might become my new system.

Sunday, April 30, 2017

Ear Infection and Cough

Before I get to the obvious content of this post- take a look at the dress Tehilla wore today. When I came to pick Tehilla up from school, her teacher asked me why I did not send her in white and blue as had been requested for the school Yom Ha'atzmaut (Israeli Independence Day) today. I said, "There is white and blue on her dress..." Her teacher said, "Come on...you know what I mean..."

I said, "Betty, I know what you mean but you don't understand what I mean. I mean that was all the blue and white you were going to get Tehilla to agree to. And that means it comes with a healthy helping of pink too. She wouldn't hear of anything else, and this was not the battle I was fighting this morning."

When I picked Tehilla up from school, her color looked off and she felt warm. When I checked her temperature it was just a few decimal points away from a fever and I was not willing to wait to get stuck without a doctor over Yom Ha'atzmaut.

So we saw the doctor on call tonight who immediately saw that Tehilla has a very bad ear infection and could hear her cough and associated it with a post nasal drip. Because she has been taking antibiotics about every two weeks,  he prescribed her a very strong medication to hopefully get rid of these bacteria that seem to be lingering.

Let's hope it helps and she can stay healthy. 

Saturday, April 29, 2017

Spring/Summer Begins

Spring, but more like summer, has started in full blast. With the heat comes our new experience of watching how Tehilla's well adjusted post- Fontan heart handles the heat. I can already see a noticeable improvement in handling the heat. While she still gets sweaty fast it is not to the degree it was. This shows on a very basic level the improvement of her heart function.

Tehilla was Ima shel Shabbat! And from 6:00am until we got her to school that was all she talked about.  She loved every second of it and insisted that we call her Ima all weekend long.

Her cough came back on Thursday. I started doing some DIY home improvements and caused a lot of dust in the air. I'm hoping that's what caused it and not that the cough we just got rid of 2 weeks ago has come back. If it is not gone in another day or two or fever starts, then we will go back to the doctor.

Other than that, everyone is doing well.

Enjoy the pictures!

Sunday, April 23, 2017

The Rest of Pesach

The rest of Pesach was very nice and filled with a lot of family time and some fun outings. Within 2-3 days of Tehilla taking the antibiotics, her cough completely went away and she was back to her normal self.

We spent a day at the park and playing locally and on the Friday, we took the kids to a strawberry farm in Hod Hasharon. It was an incredible experience for all of us. We paid an entrance fee and were given 3 cartons for filling up with strawberries, as well as the ability to eat as many strawberries as we wanted while walking around.

The kids ate more than their weight's worth in strawberries and had the greatest time tasting from the 3 different strains of strawberries. We also picked flowers in the flower gardens and Tehilla did everything she could to get one of every colors. Then she realized that she loved pink too much and should have only picked pink flowers.

It was a wonderful experience and we will definitely be going back in the future. Just watching our 3 kids, in the sun, searching for that perfect strawberry, while hopping around through the strawberry plantings- it gave us great joy and we felt completely blessed, once again, to have the ability to enjoy these moments.

Here are some of the photos. Enjoy!







Thursday, April 13, 2017

Medicated

Pesach seder night was incredible fun that was mixed with a still feverish Tehilla and persistent coughing. We were up throughout the night with her coughing and when her fever returned in the morning, we started Tehilla on antibiotics.

Within 24 hours, her fevers finally stopped and she overall looks less sick. Her coughing fits are still happening frequently.

She was well enough this morning to go to one of her favorite places- the zoo! She had a great time and enjoyed every minute of it. She fell asleep on the way home and napped a very long time.

It seems that Tehilla is on the mend with the antibiotics. Thank g-d.

Monday, April 10, 2017

Pesach Ahoy

Tehilla has not improved and gave us a very rough night.  She still has fever today, so tomorrow unless things change we are treating this like pneumonia.

She is well enough for us to stick to our Pesach plans and enjoy seder in Bet Shemesh.

During one of her inhalations,  I brought up her birthday party in October in an effort to distract her...it resulted in 12 hours of non-stop talk of pink princesses and pink castle cakes. Now, all she keeps talking about is going to her cousins.

So Pesach ahoy! Wishing our entire blog family a happy and enjoyable holiday! 

Sunday, April 9, 2017

Wait and See

Tehilla had a blood count done this morning which came back fairly normal. The doctor decided against a chest x-ray because Tehilla has had a crazy amount of x-rays in the course of all of her treatment.

But we were told to start antibiotics if her fever isn't gone in 2 days or if she becomes lethargic.

Right now she goes between not doing well and tons of energy. So fingers crossed...

Saturday, April 8, 2017

Pesach Prep

With our home all ready for Pesach and our plans all set, our family in town and everything ready to go, what could possibly go wrong? What would we have to worry about? It seems like life would possibly be boring...

No worries. Tehilla thought of a great way to keep us busy around the clock. Thursday evening she started with a slight cough that very quickly turned into a viral upper respiratory infection. She also hurt her eye when something flew into it and she rubbed it incessantly. So Friday morning we were at our doctor. She received drops for her eye and she was checked thoroughly because of her cough. But it was nothing more than a cough. 

All of Shabbat her cough got worse and she developed a fever. I started her on Mucolit and saline inhalation to loosen the mucus she was choking on. I monitored her oxygen saturation which was 82-91 (amazing for her!). She seemed to improve. 

Our doctor made a house call tonight to check on her. Her chest sounds clear and her oxygen levels are great. He is concerned because she has had coughs off and on for over a month. He is sending us for a blood test in the morning and then depending on the results, a chest x-ray as well to rule out pneumonia. 

So...we are keeping it busy around here. Here is a picture from Tehilla's school Pesach party. 

 

Thursday, March 30, 2017

Home

Oh it is so nice to be home. No- we were not given our stroller right at the gate- but the reason is because all strollers are given about a 2 min walk from the gate.  I was okay with that. The flight attendants started arguing on our behalf but I told them it was okay. 

For all future trips, I will find out about requesting special accommodations far in advance and not allow that to happen again.  By then, of course, Tehilla might be able to walk further distances.

Tehilla fell asleep the second she lay down in her bed.  Ah, home. We had the most wonderful trip but it's so good to be home...

Special Accommodations

I know that once we land, I'll be too exhausted to update,  so I'm writing this post now on the plane.

On our way to the US, our stroller was checked at the gate and was not returned to us in Paris for our connection. We didn't get it at the gate when we landed at Newark. Instead, we got it at baggage claim. We were told this would happen and I explained to the personnel that my daughter had a heart condition and couldn't walk more than 5-7 min and I needed my stroller.

My concerns were brushed off and I was told that the airport in Paris would have carts with seats. Yes- well that was after changing terminals and going through security.  I was forced to carry Tehilla for over an hour.

On the way back, our stroller was actually returned to us in Paris at the gate. So when boarding our connecting flight to Israel, they were going to check the stroller and again not return it until baggage claim.

I was insistent about Tehilla's heart condition and that I must receive it at the gate. At first they tried to brush me off, but I was adamant. So, they made a special accommodation and have been updating me on the flight in hopes that we will receive the stroller at the gate. I don't know how someone with an infant would manage but I can't carry Tehilla through the entire airport.

Let's hope that this worked. 

Take Off

Cudos to the genius who thought it was a great idea for 3 kids to kit be sitting with a parent and all of us to be scattered on the plane. A few nice people switched seats with us and we are all close enough and Tehilla is next to me. I should have let the woman who was adamant about sitting next to the window just take care of Tehilla on her own. A lot of passengers gave her shameful looks.

Off we go!

Wednesday, March 29, 2017

But Of Course

So here we were on vacation, jam packing our days with meeting up with as much family and friends as possible, while seeing the sights and going to the Museum of Natural History. Everything seemed fine. Yesterday after an outing and getting Baskin Robins, Tehilla fell asleep in the car on the way home. 

She woke up a few hours later and skipped quite happily over to me and said, "I have a headache and my head is hot." She had a fever of 38. And we are flying back soon.

Adrenaline rush, some quick help from my friend and a call to the travel insurance and we were on our way to a walk-in clinic. 

It was an unusual experience taking a child like Tehilla to a random doctor. But the doctor was very good and found the culprit illness. She took one look in Tehilla's ear and immediately saw that it was severely infected.  The doctor said, "I guess given her medical history, she has a very high pain threshold because she should be inconsolable with that kind of infection but she seems to be very good natured."

She started antibiotics and is taking Tylenol. I had with me on the trip Otidin ear drops (anesthetic ear drops) just in case, so she is getting those too. 

It didn't stop us from heading to the mall today and treating the kids to Cinnabon. Tehilla took her first bite and said, "Oh, yummy. I love this. We can have this for a treat on Shabbat?" 

Tomorrow, we fly out. This trip went by so quickly and we are all sad to be leaving.  The solo parenting part was challenging but every minute was worth it to be able to spend this time with our family.