Thursday, March 30, 2017

Swimming Home

Haifa feels like home because of the people we have met and the mountainous trails with views that stretch for miles. I could find home in a progressive western town if that were all but what brings me the most joy is the sea.

I went for a beautiful, and a bit exciting, 40 minute swim in the sea at 6:20 this morning with my friend Max. The air temperature was a deceivingly pleasant 65F; however, we were both grateful for wetsuits (he a full and I a farmer johns) upon entering the water and both wished for hoods as it was painful acclimating our foreheads to the cold water. Before our heads could acclimate, we saw a couple large (1 foot in diameter) pale, blue-clear jellyfish. The waves were small but on a period of 2s with a strong wind that made them forceful and choppy such that finding a rhythmic breathing pattern was impossible. The sun rose shortly after we entered the water but we could not tell with the grey, overcast clouds that filled the sky. Thick rain could be seen a few kilometers out to sea and the dim light made spotting jellyfish tricky; however, two 55-60 year-old men began swimming just before us in regular swimsuits so we had no choice but to head toward one of the orange buoys bobbing 300m offshore. We then turned south to head into the current, which was pulling to the northwest, with fresh arms. Once the water got beyond 15' deep, the jellies seemed to remain in the 10-20' layer below the surface so our concentration turned to breathing in the chop, trying to keep the current from knocking us into each other, and Max's developing sighting ability, which added extra zig-zagging and bumping to the already pushy current. Just as we were nearing the shore at the end of the swim, I put my face back in the water only to discover a very large jellyfish what looks like 9 inches below my face. I swam as shallowly as possible. Max watched my jelly with concern, poking the top of a jelly to his other side. Once out of the water, we were both smiling with relief and contentment as we parted to enjoy the newly installed hot-water, beachside showers.

My swims last fall were not nearly as exciting but just as fulfilling. The feeling afterward is much like the runners high I remember from my running days before kids. As the days get warmer, I'm looking forward to spending many long afternoons at the beach with the rest of my family as playing in the sand or splashing in the water with the kids fills me with peace as well.

What will I find in Blacksburg to fill the void of all I have found here? Will the pull of this place be enough for me to take the plunge and try to move my family here for good some time in the future? If the opportunity arose, the two things that would need the deepest consideration are the discrimination my non-Jewish children would face and the new medical system Shayna would reside in.

When the sea is more inviting to surfers than swimmers, there are beautiful, flat paths along the shoreline. I am now the owner of 5 bikes but Maya is not yet proficient enough to do more than a few circles on hers, with training wheels, so she happily catches a ride with me.

Wednesday, February 15, 2017

Shayna's Liver is Healing

Shayna, and us, have been dealing with some rejection like "activity" in her liver since March of 2015. While her liver enzymes have been within normal range since the initial burst of steroid usage that spring, there was no change in her liver tissue the following spring and again no change six weeks after that following a second high steroid dosing. (Steroids suppress the immune system, among other things.) The third immune suppressant (Cellcept) that had been added in April, 2015, after the prednisone (steroid) did not fully correct the highly elevated liver enzymes was changed to the slower affecting, atypical Rapamune (sirolimus). Since Shayna's liver enzymes had remained stable and normal since April, 2015, only a liver biopsy would be able to show if the Rapamune was effective and at least three months was required before the biopsy to allow the Rapamune time to work. That was beginning of June with six weeks until we left for our year in Haifa, Israel.

"No problem," we thought, "Israel has great Western medicine and a socialized system so it shouldn't cost that much. Plus, they have a great Children's Hospital with a transplant team so will understand how to help us with Shayna's care." We were in for quite the sticker shock after Shayna's first routine lab work and 20 minute doctor's visit at Schneider Children's Hospital in Petah Tiqwa when we had to pay over $1,000 thanks to "medical tourist" rates. (I'm still trying to get some money refunded from our US insurance company. The paper work is proving tricky but I haven't given up.)

After battling with Immigration Services, an initial citizenship rejection, and Nahum spending the better part of a month compiling a book to show that we were in a relationship before Shayna's conception (an apostilled marriage, or any other, certificate doesn't count here anymore), the kids were all granted citizenship in December. This meant no more Medical Tourist rates PLUS the kids were approved for the national insurance program, pre-existing conditions (transplant kids are expensive) and all. We were finally able to schedule Shayna's biopsy for end of December.

Shayna has suffered the most illness wise since we arrived with at least 4 vomit-inducing GI bugs and a handful of other cold and flu-like viruses. Unfortunately, two of these hit within a 7-day period at the end of December postponing the biopsy until January 2, 2017, and landing Shayna in the local hospital for IV fluids after kidney distress, caught by routine labs. Her kidneys are still recovering as we continue to push water.

Last week, I got the official report from Children's Hospital of Pittsburgh (CHP) transplant department that the biopsy showed healing. This means Shayna is no longer in rejection. They want further testing in an MRCP as they believe the rejection stems from the bile duct system and not the liver tissue itself. (Magnetic resonance cholangiopancreatography or MRCP uses a powerful magnetic field, radio waves and a computer to evaluate the liver, gallbladder, bile ducts, pancreas and pancreatic duct for disease.) (I am not a medical expert so this is just my best understanding of the situation; doctors, please don't judge.) 

The move has also taken the greatest psychological toll on Shayna. The first three months of school were miserable, Nahum spending the better part of a month in the hospital and me solo-parenting for a good six weeks, didn't help. She still suffers from intense stomach pain nearly daily. We believe this is a hold over from the stress, which manifested physically as headaches and stomach pain, from the fall; however, we are having her medically evaluated. This means I get to collect her poop in tubes three times over this week. (The joys of motherhood.) Plus, the doctor suggested no dairy for a week.

Nahum has fully recovered physically. Mentally he is still trying to play catch-up and push through the stress the move and illness has had on him. He enjoys going to the office these days, having several colleagues with which to talk astrophysics and explore restaurants at lunch, and exercise walks several times a week.

I am coming out of the haze as my Ulpan (intensive Hebrew school) ended two weeks ago with the official government exam on January 31. I learned a lot, can read and understand simple Hebrew fairly well, and help Shayna with word problems in math but still want to hide in a corner and cry whenever I attempt to create my own statements in the language. I was also completely burned out by the end of the first week in January so felt like I was going through the motions of learning and not actually able to absorb much after that point. The Ulpan was kind of like a job simulation to me and, because of the way it ended, I feel like we failed as a family to support me working outside the home. I definitely learned from the experience and we have some work to do as a family because I want to re-start my career next fall. The initial easy thought is that 90% of my income will go to childcare/house help. I'm thinking after school nanny/kitchen-and-laundry assistant plus 8am-3pm Montessori for Maya. The harder part is creating new communication habits with my husband where I effectively ask for what I need before I catapult over the cliff edge. Both will be very difficult and require me to be much more self aware. The hardest part will be having patience to see if Nahum decides to create new, productive habits too.

With everyone's returning health, we have started hiking in the beautiful Carmel National Park that boarders Haifa to the south and other trails that loop around and through our area of the city. We've met some amazing people here that continue to want to hang out with us and encourage us in our outdoorsy aspirations. The following pictures are from our Nahal Alon and Nahal Oren hike on Saturday February 4. We're planning on hiking this weekend to see how much the hills have changed. It's spring here so the flowers are starting to bloom and soon the hills will be covered in red poppy like flowers. With everything we have experienced, I still love it here. The hikes have views everywhere, the sea is 15 minutes away, and there are so many construction sites to watch.

Throwing rocks in mud puddles to see how many adults can be splashed.

One of our many snack breaks, also known as bribing the kids to enjoy hiking.

Celebrating being near the end.

Monday, October 31, 2016

I Don't Like Talking on the Phone but My Husband is in the Hospital.

I like to talk to my husband on the phone but it is hard to answer everyone else's questions of how we are doing, how he is doing, or what's going on repeatedly so I return to the reason I started blogging in the first place: to inform those who care about our life when we are struggling. It started one Shabbat when Shayna projectile vomited in the middle of the back seat of the car. The other three all eventually succumbed in varying degrees to the virus over the week; however, Nahum took the hardest hit with appendicitis. As the surgeons took his appendix out two and a half weeks ago, it burst during the procedure. After two weeks of recovery, he was doing worse but couldn't get an appointment with appendectomy doctors so after seeing a specialist, because the specialist is the cousin of a good friend, he was told to check back into the hospital with a list of tests to run.  This was three nights ago when he checked back in via the ER and was diagnosed with a severe bacterial infection that had shut down his small intestine. He continues to be in a fasting state and will be in the hospital indefinitely. 

Nahum is quite frustrated with the care he has been receiving but, unfortunately, it goes with the saying that if you're sick the last place you want to be is a hospital. With the infection his body is fighting, I worry about the other microbes he might pick up there that could make things worse. The children, especially Shayna, are sad that he is not home to play, cuddle, and show them videos. I am overwhelmed with all that needs to be done on a routine basis between child care, home maintenance and learning a foreign language in that country. I don't get everything done everyday but I am getting better at picking out the important things and being ok with the rest going undone, like I still don't have my verb flashcards made that I've been longing for and the sink isn't scrubbed every night, so I have time to read to and cuddle and talk with the children.

We have met some amazing people that have already become good friends and I am so thankful to have their joy and presence in our life right now. Then there's Nahum's family. His older brother, who lives nearish, who has spend several days and a couple nights with Nahum at the hospital and a sister-in-law-ish who took my kids to the park so I could have some peace then cleaned my kitchen.

We went to a Halloween party Saturday night and we're invited over for dinner and a movie tonight. We will meet some other friends, Israelis we met in Blacksburg when we first became parents, Friday morning for a running race. They will do a 10K and and I will do the 1k with the kids. (They even get t-shirts.) I signed up for the 5k but I wouldn't finish before the kids' run starts for I'll just have fun with the kids.  I don't know when I will swim in the sea next, which is a hard loss for me, but I use the three flights of stairs along the outside of our apartment to get some exercise while the children played underneath.

My Leopard Queen, Queen Elsa, and Marshal from Paw Patrol. (Halloween is not an Israeli holiday.)

(I made the cape with an amazing sewing machine borrowed from our summer babysitter.)

At a birthday party for Elijah's classmate: The girls in his class like him because he's such a sweetie. He's playing push-back with Libby here. Abigail, the birthday girl, jumped into his arms and gave him a kiss when he walked in the door. Maya enjoyed the dance party and pizza but really wished some of her school friends had been there.

Elijah with a tiny 611 at the Haifa Train Museum.

Playing in the luxury passenger car at the Haifa Train Museum. 

The Haifa Train Museum was impressive with all the restored cars and engines that one could climb into and explore. Plus, all the placards were in English and Hebrew.

Saturday, August 13, 2016

To Haifa

We should have started organizing and packing the house 2-4 weeks before we did. As usual, we were both so overwhelmed by the work we each had to get us and a household to Israel with 95% of our house in the basement, including garage, we procrastinated and avoided longer than we had hoped. In the end, there's nothing like the rush of a dead line to get one moving and the help of good friends to actually make it work.
On our frantic drive to Newark where we made 64yo Uncle Charlie climb over the seats into the back to wedge himself amongst the luggage while I digitally navigated Nahum to northeast. Luckily, Charlie slept most of the way.

The last two days were a crazy blur of boxes, overweight luggage, and a storm system requiring a total flight itinerary change. Thanks to an amazing helper/nanny who came 15-20hrs/week durning June and July who has a mind for organizing, our awesome neighbors who did some serious heavy lifting the last weekend helping us clear the house, pack and watch the kids, and "Uncle" Charlie who is not only managing the house as a rental but drove us last minute to Newark, NY as we tried to beat the storm and catch our original 3rd flight of the day into Tel Aviv. We made it to the airport with 20 minutes to spare.
Uncle Charlie and the kids at Newark Airport. 
On the airplane: Elijah curled up on two seats while Nahum adjusts his pillow.
Shayna eventually stretched out on the floor and Maya stretched out on the two seats but this was such a sweet start to the night.

The flight was only about 70% full so we had two sets of 3 seats including a window. The kids were angels, the leg room seemed slightly more than in the past, and the head rest didn't force my head forward like it usually does so I was able to rest while the kids slept around 6 (Shayna) to 8 (Maya) hours. Getting our rental car took the usual hour but there were no surprise fees this time. And the car has Waze for gps! It took two hours to get to Haifa with Nahum's brother Dudi driving his car packed full of all our bags and us dutifully following Waze instructions in our Hyundai.

The 5:30am August 2nd view from our balcony. Haifa Bay is in the mist.

Sleep-preventing jet lag only last one day for Elijah as he consistently slept through the night starting at night two; though, he was quite grumpy most of the first week. Maya, Shayna and I had a couple wee hours of the mornings excursions. Shayna had a few days of utter exhaustion as sleep at anytime before 4am was hard the first three days and Maya kept waking me around 1:30 or 2am. She was very patient in prodding me out of bed as I was ready for much more shut eye. Benadryl on the fourth night finally did the trick for the girls. Nahum also took a while to settle in after collapsing the first night from travel exhaustion but is back to his normal routine of random night wakings that has nothing to do with jet lag.

It have been a bureaucratic nightmare getting life set up here. The apostille seals Nahum so dutifully got for our official documents (marriage certificate and kids' birth certificates) isn't good enough anymore for the State of Israel. It wants printed pictures with dates showing Nahum and I before I was pregnant with Shayna and the birth records showing I gave birth to all three with Shayna's details being the most important. (I can only guess that adopted kids have much tougher hoops to jump through to get citizenship.) Getting medical records while a sea away was like pulling teeth, especially as I tried to get them faxed to me. We ended up with Uncle Charlie picking them up to scan and email, which makes no sense why I can have some random person pick them up but can't have them directly faxed to me but they can fax to any doctors office. We have them now in all their inaccuracy (apparently Maya has two sisters) and Nahum will take them down to the ministry for approval Monday (Sunday is a holiday) before he hauls the family down again.

It's been trying in similar manners to get ahold of school officials for Shayna in elementary school and the Ulpan they had us register for but then never said if she'd gotten into it. She did and starts Monday. She's excited to be with other kids who don't speak Hebrew; it will be a mix of Russians and Americans as Haifa has a very high Russian immigrant population. Trying to coordinate Shayna's medical care has the added hassle of Nahum and I needing to listen and hear each other, which I'm still not sure about but at least he spoke with the transplant coordinator here in Hebrew so he could hear Schneider's Children's Hospital people's inability to help us find local places to take Shayna straight from them. Nahum has entered full pessimistic mode as one by one his hopes of smooth transitions and help from experts has been smashed to smithereens. Most people can speak conversational English but not technical English so there is very little I can do on the Israeli side other than gather paperwork. It also took 4 days to set up a bank account here and transfer money from the US. The money left our account there 2 days ago and has still not arrived in our bank account here.
Getting balloon animals from a volunteer at Schneider Children's Hospital. (Shayna's labs were great but resulted in two medication adjustments, a decrease in both prednisone and Rapamune. Yay!)

I have signed up for an Ulpan that starts Sept 5th and is 8:30am-1pm 5 days a week for 5 months. I hope things get sorted out before I start as it will be the same commitment as having an intense, outside-the-house job. We also need to find a place for Maya, which has taken a back seat to all the official and medical stuff. I was giving the info on a new Waldorf preschool that does have space for Maya but am now learning about all the strife between Waldorf and Montessori. I'll do some Waldorf philosophy reading and talk with the teacher/owner again Sunday (Israel's Monday but Friday is only half a Saturday as many people work in the mornings and most schools have session too). I think mentioning our Montessori past was a strike against me but I just want a place that respects each child and gives Maya a feeling of security and belonging. (The normal daycares and preschools are even more chaotic than American ones. It's going to be hard enough on me without the gentleness I had grown accustomed in America.)

The beach, a very easy 15 minute car ride down the mountain, has been a blessing with all the other shenanigans. The sand sculptures and water play can even make Nahum forget his cares while there. We have had such dreamy visits but I don't have any pictures to show. The big kids can swim in the gentle waves now and Elijah even likes to go out farther than Shayna. We found a calm, and very popular, cove at the Carmel Beach where a rock wall makes the waves quite gentle so that even Maya can stand on her own waist deep at trough height. The kids and I have also enjoyed exploring nearby parks and Maya has gone a couple walks with me in the Ergo carrier. Having and extra 30lbs on my back has made all the stair climbing quite a workout.

The huge playground about 800m from the house. The kids can easily walk one way but two is asking a bit much from them yet. They did the hard way (home is up hill from here) with the sitter. Elijah whined the whole way but Maya and Shayna did fine.
I take pictures while shopping all the time so I can come home to translate the words in the hopes that I will rely less on pictures very soon.

I still can't find the popsicles we like so indulged the kids' requests with some mango ones that were at least 30% fruit. (Israeli kids rival American ones with the amount of sugar in their diet.)

This is the tiny playground just around the corn from our house. Maya will swing for hours but the big kids love to play make believe games on the rope ladders and baskets so everyone is happy.

August 12th and Elijah lost his first tooth at 5y-6m-7d old. He has been unable to munch unsliced fruit for about 3 weeks now but it hasn't slowed him down much.

Friday, June 3, 2016

Liver Biopsy Reports

We got the official instructions as well as a copy of the reports from the last two biopsies yesterday. There is still some mild rejection activity; nearly no change from last month. Because Shayna's LFT (liver function test) numbers spiked last month after they started her on prednisone, they don't want to do that again so are changing the added immunosuppressant from Cellcept to Rapamune (sirolimus). It's in the same family as Prograf (tacrolimus), the main immunosuppressant Shayna will be on for life, but acts a little differently. There is a concern of diminished white blood cell production, and therefore immune system response, but Rapamune does not cause kidney damage like Prograf can. She will start the new medication this evening, special order by the pharmacy, and we will check all her lab numbers in a little over a week. (I prefer Mondays or Tuesdays as that gives us time to get the results and react as needed instead of having to wait over a weekend.)

The results do not seem to impact our trip to Israel. The transplant team would prefer a biopsy in 6-12 months but are fine when I said we won't be back in the states until late July 2017 (13-14 months). It also doesn't change the medical system we will need to set up around Shayna in Israel. The same risks are still present so we are still planning to meet with a pediatrician the week we arrive and establish a place to get regular labs. Schneider Children's Hospital, a little over an hour south of Haifa in Petah Tikva, would be the center for a biopsy or any inpatient treatment Shayna might need. All these plans and connections would need to be made whether or not rejection had been found this spring as that is just life for Shayna.

On a playful note, Shayna and I loved the National Aviary in Pittsburgh. We sat in on the hot rooftop Soaring show where we were dive bombed by Black Kites catching flying chicken feet thrown by their handlers and watched small vultures hop around their handlers begging for treats. The penguins were beautiful and their setup was perfect for watching them gracefully glide through the water. We even got to see the baby sloth cuddled in a blanket with a handler. However, Shayna's favorite thing was gazing at the Stellar's Sea Eagles.

Elijah, Maya and Nahum did great while we were gone. The kids loved the extra school time and getting to eat lunch with their friends. They all got to go to a friend's house for dinner Tuesday where the kids were doted on by the older daughters and Nahum got to enjoy adults in the evening.

Today is the last day of school for Elijah and Maya, and my last quiet morning. I am cherishing it and preparing for the chaos to come.

Shayna and the Crown Victoria's Pigeons.

I thought these vultures were pretty cute the way they hopped around, titling their heads questioningly for treats. 

Tuesday, May 31, 2016

Liver Biopsy Fun

Last month's biopsy surprised us. While Shayna's liver function lab numbers had been good, the biopsy showed rejection. Less than last year, but rejection that needed treatment so back on the 20mg of prednisone twice a day she went. She responded better so the weening process has been much faster than last year as she is down to only 5mg daily now and, if labs are good today, might be lowered to 2.5mg daily. With the surprise rejection came the request of a follow up biopsy 4-8 weeks later which puts Shayna in Pittsburgh today recovering from another biopsy. As you can see from the picture above, she's a trouper and even got a cool Littlest Pet Shop toy for her troubles. We're suffering through the mandatory 4hrs bedrest which Shayna stopped appreciating 5 minutes into it. She is not one to sit still for long. 

We'll get the results of the biopsy tomorrow but won't know the long term plan until at the earliest Thursday. The transplant doctors will compare the last three biopsies at their next powwow and come up with their best idea on keeping her rejection free for a while (i.e. medication regime).

I made some roasted chicken and vegetables for Nahum, Maya, and Elijah, arrangements for the kids' school to keep Maya and Elijah until 5pm today and tomorrow, then left town with Shayna yesterday morning. We made lots of fun stops to make sure the blood flowed smoothly in our legs including New River Gorge Overlook, an elementary school playground with running track, and a Burger King playground. Shayna watched one movie but spent most of the time up front talking with me or singing along with the music. I love the conversations one can have in the car. We also had some goofy fun after resting in our Ronald McDonald apartment with a 2.3mi walk/hike to a park and back that included lots of potty humor.

We hope to check out the Pittsburgh Aviary tomorrow before we leave town then make it back to Blacksburg by 8pm. We miss the others dearly and I would be quite happy to do without these medical journeys; however, I love the chance they give me to just enjoy Shayna and stay connected with my growing, curious and goofy daughter.

Wednesday, April 13, 2016

Shayna is 7!

Feb 20th: Birthday party fun.

and 1 month, 2 weeks and 3 days. We celebrated with frozen yogurt in the morning and International Night songs with Elijah's school in the evening. And a pool party the weekend before as a party for both kids. They wanted an event so agreed to a joint party at the local pool. It was a splashing success.

Feb 20: Elijah with his other fierce wrestling pal Izzy. (The first is Shayna of course.)

Feb 27th: Getting ready for singing at International Night.

Seven seems old to me but appropriate. I don't get the feeling that she, or either of the other two, are growing up "too fast". It all feels just as it should be. Shayna reads well and handles number intuitively but gets easily frustrated when she has to work on things. She's the best big sister Maya or Elijah could have asked for with Maya getting extra special care as the little sister Shayna longed for and is still smitten with. Elijah is a playmate that she can insight to misbehave or beat in running races. She's enjoying more neighborhood autonomy as I let her walk, or ride her bike, to friends' houses in the neighborhood or just explore our "block" with her brother. She enjoys first grade, shows an affinity to creative art work but claims to love PE and music the most. (Kipps has an amazing music teacher.)  She still loves the bus where she can socialize with older and younger kids. She and Elijah enjoy Crossfit Kids twice a week at Crossfit460. (I like that strong is a compliment to not only my boy but both my girls.)

Shayna has been working with a kids' counselor since January to work through the trauma that can come from being a transplant baby. It's had an interesting effect on her emotional outbursts. First of all, they're less frequent but even in the midst of them she can state "I feel _____ when you do _____," or "I feel _____ when ______ happens". I was unable to get through to her thinking brain before but she is now able open the gate to it on her own and let me in. I love when we're able to hug and talk through things now and hope to learn from her example more.

This post is brought to you by a followup liver biopsy and Savta Judy taking the other two for the day so I can just be here for Shayna. All is well; it's just routine followup because of the rejection last year. Shayna is watching A Little Princess as the anesthesia wears off. We have a clinic visit tomorrow then will go to the zoo. We'll go home Friday after the biopsy results are in and enjoy the dinosaur skeletons at the Natural History Museum before we leave town.

March 16th: Shayna had been begging me for spaghetti and meatballs so when I finally got it together she helped by rolling all meat balls.