Shayna and I went to the doctor this morning just to make sure she didn't have an ear infection as she'd been pulling and holding her ears a lot. No ear infection (just self soothing from teething) but she did finally DOUBLE her birth weight. She's now a whopping 8.2kg (18lb1oz)! She is also telling me no for things other than eating by turning her head as far over her left shoulder as possible and looking down. She'd been doing this for months to indicated she didn't want whatever you were trying to feed her but only did it when offered food. I asked her today if she needed to go to the potty and the brilliant little monkey turned her head to indicate no. She did this more than once today but also didn't do it once. She just made one of her talking noises so I put her on the potty and she peed a lot.
On a more serious note, we will probably be heading to Pittsburgh next week because her liver numbers did jump. The doctors were still in the OR at 5pm so they have not had a chance to review the labs to let us know how urgent the situation is. If we don't hear from them tonight we'll hopefully won't head up until Tuesday for a Wednesday morning, outpatient liver biopsy. If someone calls us tonight then we have to drive up Sunday and admit her to do an inpatient liver biopsy Monday. Nahum leaves for a conference in England on next Saturday followed by a short visit to his family in Israel so it'll just be Shayna and I in Pittsburgh. Depending on the biopsy outcome (if there's treatment needed and how long that will take), my CO mom Melinda will fly out to stay with us for a week or so.
We'll let you know when we know. Until then, keep your fingers crossed for us.
Friday, April 9, 2010
Saturday, April 3, 2010
From Gefilte Fish to the Easter Bunny
Lots of holidays to celebrate. Shayna made her first Easter Egg hunt this morning; though, since parents couldn't accompany their toddlers into the coral (see pic below) we had to rely on a friend's child to get Shayna couple eggs (Thanks Sharon).
Labs went well again this week with very little fussing by Shayna. Sitting on my lap for them seems to really help. The results were not that awesome though. 2 of the 3 liver numbers they watch had climbed a little then plateaued for a week then climbed again last week and her EBV doubled again. We'll repeat everything again next Thursday and if it's the same or worse we'll probably have to head to Pittsburgh for a liver biopsy to test for either EVB Hepititis (where the EBV has begun attaching the liver) or rejection. Neither one is a good scenario as we could be spending a week or more up there for treatment, plus they're just bad things to begin with. This is also par for the course so none of this is unexpected or abnormal. I'm incredibly thankful for the health care passed this week so Nahum and I will be able to insure Shayna until she's 26 and she won't be denied coverage after that for her pre-existing condition as the infection/rejection struggle we're in right now will continue for the rest of her life.
Our adventure for next week includes a trip to DC. We'll be heading there tomorrow through Wednesday for some museum fun and the gorgeous cherry blossoms.
Patricia, Shayna, Hila and Sharon in front of the Toddler Egg Hunt coral.
We went to meet with Sital and Serena. Serena actually got some eggs as she can walk well and is exactly 1 month older than Shayna.
We did the obligatory torture you toddler with the weird constumed person picture.
Most kids took too it.
Ours did not.
Labs went well again this week with very little fussing by Shayna. Sitting on my lap for them seems to really help. The results were not that awesome though. 2 of the 3 liver numbers they watch had climbed a little then plateaued for a week then climbed again last week and her EBV doubled again. We'll repeat everything again next Thursday and if it's the same or worse we'll probably have to head to Pittsburgh for a liver biopsy to test for either EVB Hepititis (where the EBV has begun attaching the liver) or rejection. Neither one is a good scenario as we could be spending a week or more up there for treatment, plus they're just bad things to begin with. This is also par for the course so none of this is unexpected or abnormal. I'm incredibly thankful for the health care passed this week so Nahum and I will be able to insure Shayna until she's 26 and she won't be denied coverage after that for her pre-existing condition as the infection/rejection struggle we're in right now will continue for the rest of her life.
Our adventure for next week includes a trip to DC. We'll be heading there tomorrow through Wednesday for some museum fun and the gorgeous cherry blossoms.
Monday, March 29, 2010
A Gefilte fish story
I volunteered to bring the Gefilte fish to Pesach/Passover dinner tonight for our group knowing that my mother-in-law Lea makes an awesome Gefilte fish. Over skype a week ago Saturday, I asked if she could some how get me that recipe. Lucky for me, she was excited to share because it took some doing. First she wrote it out in French because she cooks in French so she won't forget the language. Then she nagged her husband Dov to type it out in Hebrew on the computer as she verbally translated it into Hebrew for him. (They live in Israel, he being born there and she moving there probably in the early 1950s from France though she was born in Germany.) After a few days of this, she gives up and calls her oldest son David in northern Israel and translated it to him over the phone as he typed. David then sends it as a pdf to Nahum who printed it off for me this last Saturday. Saturday night he translates it to English for me as I write out the ingredients and cooking steps. This generates a few questions and 2 more phone conversations with Lea to get everything straight on Sunday.
Armed with an ingredient list and only Sunday to figure everything out, I start calling the local grocery stores because I need whole carp scaled, de-boned, and ground and the heads, tails, and bones preserved for fish stock.
Basic conversation with all 3 places I could call:
Me, "Do you have carp?"
Them, "No, we never have carp."
Me, "Do you have whole fish?"
Them, "No, not today. If we did it would be trout."
Me, "Can you grind fish for me?"
Them, "No, no one in this area has the ability to do that due to cross contamination issues."
Me, "Do you have Pike?" (It's the other option listed in my Joy of Cooking book.)
Them, "No, we're out of that today."
Luckily, we had invited some friends over for brunch, the Sanborns. We tell this story to them and Robin miraculously solves one problem with, "Oh, I have a meat grinder on my Kitchenaid mixer. I can grind the fish for you." I still don't know what fish to buy, but at least I was temporarily saved from the horrible fate of buying a jar of Gefilte fish from the 5' Kosher section of our Kroger. After call the original 3 stores and 2 more, I'm able to locate 1 store with fish stock. Once at Kroger for the bulk of my shopping, I consult with the butcher as to which fish in the display case is most similar in taste and/or texture to carp or pike. We decided on tilapia. After picking up some fish stock, I head over to Robin's for a quick fish grinding party.
After another hour in my kitchen and two hours for the fish on the stove, I now have homemade Gefilte fish patties that taste pretty good but got a lot more help than originally anticipated to get here.. Nahum was the official taste tester as he's been eating Lea's fish all his life. While he says the texture is definitely different, he gave them his full approval (with a little salt of course).
Click here for a picture of the pot cooling on the back deck last night.
Armed with an ingredient list and only Sunday to figure everything out, I start calling the local grocery stores because I need whole carp scaled, de-boned, and ground and the heads, tails, and bones preserved for fish stock.
Basic conversation with all 3 places I could call:
Me, "Do you have carp?"
Them, "No, we never have carp."
Me, "Do you have whole fish?"
Them, "No, not today. If we did it would be trout."
Me, "Can you grind fish for me?"
Them, "No, no one in this area has the ability to do that due to cross contamination issues."
Me, "Do you have Pike?" (It's the other option listed in my Joy of Cooking book.)
Them, "No, we're out of that today."
Luckily, we had invited some friends over for brunch, the Sanborns. We tell this story to them and Robin miraculously solves one problem with, "Oh, I have a meat grinder on my Kitchenaid mixer. I can grind the fish for you." I still don't know what fish to buy, but at least I was temporarily saved from the horrible fate of buying a jar of Gefilte fish from the 5' Kosher section of our Kroger. After call the original 3 stores and 2 more, I'm able to locate 1 store with fish stock. Once at Kroger for the bulk of my shopping, I consult with the butcher as to which fish in the display case is most similar in taste and/or texture to carp or pike. We decided on tilapia. After picking up some fish stock, I head over to Robin's for a quick fish grinding party.
After another hour in my kitchen and two hours for the fish on the stove, I now have homemade Gefilte fish patties that taste pretty good but got a lot more help than originally anticipated to get here.. Nahum was the official taste tester as he's been eating Lea's fish all his life. While he says the texture is definitely different, he gave them his full approval (with a little salt of course).
Click here for a picture of the pot cooling on the back deck last night.
Saturday, March 27, 2010
No Hemolyzing
Shayna is not destroying her red blood cells (phew!); her iron level is just low. In a month or two we should see the red blood cells numbers reach the normal range based on the combination of iron vitamins but continued weekly blood draws.
We like to weigh her ever Saturday to make sure she's gaining well. While last week was only a 30g increase this week we jumped 170g. We all proceeded to do the happy dance around the scale with that number. She's now at 7.87kg, or 17lb 5.5oz. According to the Denver Children's Hospital this is only 80g (3oz) from being in the 2nd percentile (this a huge improvement over the 1kg it used to be). Below is my Excel chart (download from the CDC website).
The other exciting development this shows is she is only 50g away from her previous all time high and this time it's all healthy Shayna weight. (The two dips are from hospital visits that included albumin transfusions with a diuretic to get her to pee off some of the fluid that had collected in her belly (ascites). The 2nd one was accentuate by the transplant 2 weeks later).
Today we take Shayna to her 2nd Easter egg hunt. I got her her first basket, which she really enjoys playing with, so we can collect some plastic eggs with candy for Aba.
I posted Monica's birthday pictures from Shayna's birthday. Enjoy.
We like to weigh her ever Saturday to make sure she's gaining well. While last week was only a 30g increase this week we jumped 170g. We all proceeded to do the happy dance around the scale with that number. She's now at 7.87kg, or 17lb 5.5oz. According to the Denver Children's Hospital this is only 80g (3oz) from being in the 2nd percentile (this a huge improvement over the 1kg it used to be). Below is my Excel chart (download from the CDC website).
The other exciting development this shows is she is only 50g away from her previous all time high and this time it's all healthy Shayna weight. (The two dips are from hospital visits that included albumin transfusions with a diuretic to get her to pee off some of the fluid that had collected in her belly (ascites). The 2nd one was accentuate by the transplant 2 weeks later).
Today we take Shayna to her 2nd Easter egg hunt. I got her her first basket, which she really enjoys playing with, so we can collect some plastic eggs with candy for Aba.
I posted Monica's birthday pictures from Shayna's birthday. Enjoy.
Wednesday, March 24, 2010
Good Times
Nahum and I have been relishing having a health daughter for the past couple weeks and enjoying normal family time and outings with friends. It feels so magical to be a "normal" family again.
Happenings since we've been back:
-Nahum went to the Netherlands 3/13-3/20 for a wonderful conference. Shayna and I did great while he was gone with lots of play dates and even a bbq.
-I got a Burley D'Lite ST bike trailer that I'm in love with and Shayna is adjusting to. The first ride to the store was a bit tough as she got tired and hungry before it was over and I didn't have the seat and straps adjusted quite right yet for her comfort. This morning's tour of the neighborhood went much better. Leslie came over with her 2 girls and their new trailer then the 5 of us did a loop around the neighborhood and ended at the playground. I think this helped Shayna as she loves the swings. She mildly protested when I first put her in at the house but after the park she actually seemed content in the trailer. A few more little trips like that and hopefully we can use it to run errands.
-Labs continue to get better. She sat on my lab for yesterday's and only fussed mildly when the needle went in and out but was great during the draw. She even tried to grab to the tubes, to help I'm sure. I don't know today's results but we did have to add some extra tests to see if she is hemolizing her blood (destroying her red blood cells) due to a possible autoimmune disorder because of the immunosuppression.
-Shayna's scooting more and more on her own. She continues to gain weight well. She enjoys trying different foods but would happily eat cream cheese sandwiches and strawberries all day if I let her. She takes her (cut up) generic Flinstones chewables with iron like a champ and feeds herself the medicine in her syringes.
-I went to master's swimming for the first time since Shayna got sick last night and Nahum took care of Shayna (dinner, play, and bedtime). All three of us had a wonderful time. Nahum loved walking Shayna all over the house and I enjoyed being rewarded by the Pittsburgh gym session with some good starting times in the pool and enjoy dinner and a beer with my friend Leslie afterward.
Each day continues to be a joy and a blessing with our health little girl.
Happenings since we've been back:
-Nahum went to the Netherlands 3/13-3/20 for a wonderful conference. Shayna and I did great while he was gone with lots of play dates and even a bbq.
-I got a Burley D'Lite ST bike trailer that I'm in love with and Shayna is adjusting to. The first ride to the store was a bit tough as she got tired and hungry before it was over and I didn't have the seat and straps adjusted quite right yet for her comfort. This morning's tour of the neighborhood went much better. Leslie came over with her 2 girls and their new trailer then the 5 of us did a loop around the neighborhood and ended at the playground. I think this helped Shayna as she loves the swings. She mildly protested when I first put her in at the house but after the park she actually seemed content in the trailer. A few more little trips like that and hopefully we can use it to run errands.
-Labs continue to get better. She sat on my lab for yesterday's and only fussed mildly when the needle went in and out but was great during the draw. She even tried to grab to the tubes, to help I'm sure. I don't know today's results but we did have to add some extra tests to see if she is hemolizing her blood (destroying her red blood cells) due to a possible autoimmune disorder because of the immunosuppression.
-Shayna's scooting more and more on her own. She continues to gain weight well. She enjoys trying different foods but would happily eat cream cheese sandwiches and strawberries all day if I let her. She takes her (cut up) generic Flinstones chewables with iron like a champ and feeds herself the medicine in her syringes.
-I went to master's swimming for the first time since Shayna got sick last night and Nahum took care of Shayna (dinner, play, and bedtime). All three of us had a wonderful time. Nahum loved walking Shayna all over the house and I enjoyed being rewarded by the Pittsburgh gym session with some good starting times in the pool and enjoy dinner and a beer with my friend Leslie afterward.
Each day continues to be a joy and a blessing with our health little girl.
Thursday, March 11, 2010
Lab Fiascos and Trying to Exist without Katie
So I botched both lab attempts this week by not bringing the orders, instructions for the portion sent to Pittsburgh, and all the UPS stuff to send it. Shayna had to get poked Tuesday and Wednesday and things still weren't straightened out since the prograf level test was canceled for some reason even though they kept the blood to run that test. Luckily, there's next week.
The house is 1/2 unpacked. I miss all the nooks and cubbyholes of our Eldridge house. I need to get some more pretty storage shelves and cubbies here to protect the table and counter spaces from ballagon. This house is about 2.5 times the size of our Eldridge apt but there's 1/2 the space to put things. I miss Katie the cleaning hurricane. I have to do all the unpacking, Shayna care and regular house stuff myself plus I don't get any gym breaks. Oh well, I guess it's just back to normal life and pushing the jogger.
Shayna's doing great for the most part. She's perfected the pincher move so can now get all the little things on the carpet into her mouth (a week ago she could only pick them up but would miss her mouth). We still have to coax her to scoot as she'd prefer it if we'd hand her what she wants. She squeeled and hooted at some ducks and a bunny today. We also visited Aba who showed her off to all his friends in the VT physics dept.
The house is 1/2 unpacked. I miss all the nooks and cubbyholes of our Eldridge house. I need to get some more pretty storage shelves and cubbies here to protect the table and counter spaces from ballagon. This house is about 2.5 times the size of our Eldridge apt but there's 1/2 the space to put things. I miss Katie the cleaning hurricane. I have to do all the unpacking, Shayna care and regular house stuff myself plus I don't get any gym breaks. Oh well, I guess it's just back to normal life and pushing the jogger.
Shayna's doing great for the most part. She's perfected the pincher move so can now get all the little things on the carpet into her mouth (a week ago she could only pick them up but would miss her mouth). We still have to coax her to scoot as she'd prefer it if we'd hand her what she wants. She squeeled and hooted at some ducks and a bunny today. We also visited Aba who showed her off to all his friends in the VT physics dept.
Sunday, March 7, 2010
The "Aravs in Virginia" Again
We pulled into our garage about 1 1/2 hrs ago (from starting this post) and couldn't be more delighted to be home. This homecoming was more meaningful and more wonderful than when we first brought Shayna home from the hospital at 3-days-old. It was magical a year ago because of this beautiful, new, healthy life we had been blessed with but within 4 months of that first breath we learned something was trying to snuff that beautiful life out. We took a dying child and a healthy man to Pittsburgh and have returned home with a thriving child full of life and a parent and child connected beyond comprehension. Thanks to the wonders of modern medicine and the thousands of scientists that came before and are today, a healthy man was able to give part of his liver to a dying child and save his daughter's life. We were given back our child and the possibility of a long, healthy, and full life for her.
Thank you so much for all your kind words, warm thoughts, and extraordinarily generous help through out this difficult journey. I would like to recognize today's hero Yael who drove to Pittsburgh yesterday, helped us finish packing, loaded her car with most of our belongs, drove them back to Blacksburg today, and unloaded everything on her own so it was waiting for us in our garage when we pulled up. A special thanks to her husband Frederick and daughter Hannah who went shopping for us today so we'd have some real food in the refrigerator (and he also shoveled our humongous driveway 3 weeks ago).
What a blessing to be home and have a chance at a normal life again!
Thank you so much for all your kind words, warm thoughts, and extraordinarily generous help through out this difficult journey. I would like to recognize today's hero Yael who drove to Pittsburgh yesterday, helped us finish packing, loaded her car with most of our belongs, drove them back to Blacksburg today, and unloaded everything on her own so it was waiting for us in our garage when we pulled up. A special thanks to her husband Frederick and daughter Hannah who went shopping for us today so we'd have some real food in the refrigerator (and he also shoveled our humongous driveway 3 weeks ago).
What a blessing to be home and have a chance at a normal life again!
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