Shayna's EBV-PCR level is down from 99,000 to 68,000 last Wednesday. The docs are happy because this means the oral antiviral is working so we don't have to run that test this week, just all the others.
Shayna can now walk on grass. I stuck her out in the middle of the yard so I could have some time to water my garden without her trying to play in the sprinkler or the mud. Instead of the 15 minutes I got last week because she had to crawl and therefore noticed more grass, dandelions and clovers that needed sampling, I got 30 seconds as she toddled straight to me. Luckily the back steps are just as fun as mud and water so I was able to find a good distraction for a little bit.
Monday, May 10, 2010
Sunday, May 9, 2010
Super Low Numbers
Two of Shayna’s liver enzyme numbers that we watch are the lowest they’re been since transplant. The other one wasn’t alarmingly high but is still dropping as well. (Elevated numbers indicate liver damage as well as hint at probable causes depending on which ones are elevated.) She also shows no signs of anemia yet, a common side effect of the antiviral drug Valcyte that she’s on. I don’t have the results for the EBV numbers yet but we’ll probably be on the antiviral for a while (possibly 6 months). Shayna’s getting sick of having all the medicine syringes in her face so I’m hoping we can start weaning the steroid Prednisone soon since I have to give 2 other meds with that. I long for easy days of only 4 meds w/ 1 twice daily. Now we’ve got 8 meds w/ 3 twice daily.
Shayna now walks where ever she pleases all over the house. She took her first steps 3 weeks ago on accident. 6 days later she walked for her physical therapist Lynn and I but could only go 5-6 steps before falling. When Melinda got here last Wednesday, Shayna could go in a straight line on a flat surface okay. By the time Melinda left the following Wednesday, Shayna was freely navigating the whole house but still needed a wall or object to get her on her feet when she fell. Friday she was able to squat to pick up small objects and stand again 1/2 the time. Yesterday she started being able to stand on her own in the middle of the floor. Nahum and I are just in awe of her development and skills. It’s wonderful to see her just appear in a door way or disappear into another room. She still has a lot of trouble on grass but she’ll just ask for a hand to help her so she can walk to what she wants. Her stair climbing technique was finally perfected yesterday at our friend Yael’s house as she has a 2nd floor. Shayna loves to walk back and forth between Nahum and I for hugs. She also loves books. She’ll sit by herself and flip through one book for 15 minutes and gets excited when we offer to read her a book. She’s still only got the one constant word of “ha” for hat but is starting to mimic my cow and sheep sounds though it comes out “boooo” and “ahhh”. She also has her own word for ball, kind of a combination of duck and ball that I can’t quite put my finger on.
Shayna now walks where ever she pleases all over the house. She took her first steps 3 weeks ago on accident. 6 days later she walked for her physical therapist Lynn and I but could only go 5-6 steps before falling. When Melinda got here last Wednesday, Shayna could go in a straight line on a flat surface okay. By the time Melinda left the following Wednesday, Shayna was freely navigating the whole house but still needed a wall or object to get her on her feet when she fell. Friday she was able to squat to pick up small objects and stand again 1/2 the time. Yesterday she started being able to stand on her own in the middle of the floor. Nahum and I are just in awe of her development and skills. It’s wonderful to see her just appear in a door way or disappear into another room. She still has a lot of trouble on grass but she’ll just ask for a hand to help her so she can walk to what she wants. Her stair climbing technique was finally perfected yesterday at our friend Yael’s house as she has a 2nd floor. Shayna loves to walk back and forth between Nahum and I for hugs. She also loves books. She’ll sit by herself and flip through one book for 15 minutes and gets excited when we offer to read her a book. She’s still only got the one constant word of “ha” for hat but is starting to mimic my cow and sheep sounds though it comes out “boooo” and “ahhh”. She also has her own word for ball, kind of a combination of duck and ball that I can’t quite put my finger on.
Here are a couple pictures from Melinda’s awesome visit. It was such a gift to have her here while Nahum was gone.
Reading a book.
Hiking at the Cascades.
You'll also find two new videos on youtube.
Nahum is now back from Israel and doesn’t seem to be suffering any jet. Shayna was ecstatic to see him and wouldn't let him leave her sight for the first hour. She started crying when he left her for a minute to go to the bathroom. Nahum gave me this morning off and took care of Shayna while I rested. A nice Mother’s Day treat.
Friday, April 30, 2010
EBV and Liver Numbers Down
For the 3 or 4 of you waiting with bated breath for my little updates, I thought you'd like to know that Shayna's EBV numbers went from 270,000 last Wednesday to 99,000 this Wednesday. We only started the Valcyte (antiviral) Monday evening so I don't know if that's the reason it's down or if it's another reason. I'm just very happy they're down and I hope they'll keep going that way. On the other amazing side of having another person's liver, her liver numbers are down which hopefully means the rejection is also getting under control. Since I've only seen the number and not actually talked with anyone, I'm hesitant to get too excited until I see what next Wednesday's lab results will be and have the verdict verbally confirmed by our nurse coordinator.
We are thoroughly enjoying Grandma Melinda's visit with lots of activities and a constant play buddy for the baby. Shayna is taking longer and longer unassisted walks to wonderful things like hats and balls. I even think she's starting to say ball. Nahum probably cried himself to sleep in Israel because he misses Shayna so much. He's visiting his family, and a couple colleagues, for a week and will be home Thursday. I am doing well. I got to swim with my friend Leslie today and do some plant/garden shopping with Melinda and Shayna.
We are thoroughly enjoying Grandma Melinda's visit with lots of activities and a constant play buddy for the baby. Shayna is taking longer and longer unassisted walks to wonderful things like hats and balls. I even think she's starting to say ball. Nahum probably cried himself to sleep in Israel because he misses Shayna so much. He's visiting his family, and a couple colleagues, for a week and will be home Thursday. I am doing well. I got to swim with my friend Leslie today and do some plant/garden shopping with Melinda and Shayna.
Tuesday, April 27, 2010
Strawberry-Valcyte Ice Cream
Shayna's EBV blood level jumped in the 5 days she was on the steroid Prenisone so our newest nasty tasting medicine is a last ditch effort to keep the EBV from attaching her liver since her body already is doing a little of that. Valcyte is an antiviral drug typically used to fight CMV (another common virus that can cause some trouble with transplant patients) in some transplant patients; though, it is an off-label use for liver transplant patients. Since we are currently dealing with a little Mild rejection so have to suppress her immune system, we also have to help her immune system deal with the EBV. While all this is a bit scary and overwhelming, it's nothing the Pittsburgh transplant team hasn't dealt with before. It also strickly manifests itself on the lab level only so Shayna is still growing and developing with no signs of any issues.
In fact, we had a major development milestone yesterday. Shayna strung several steps together a few times and even kicked her purple ball on one of her walks. She was showing off for her physical therapist I think as she usually like to do firsts with an audience if she can get one. She also discovered the joys of doors and draws Sunday (and I forgot to get cabinet locks on my shopping trip yesterday). The only thing left is climbing and then nothing in the house will be safe. It is truly a joy to be in this position with Shayna. Watching her thrive and grow brings Nahum and I such pleasure that the extra work is actually fun.
With all her new talents, I don't think she's quite ready for a spoon. I let her feed herself yogurt & kix Sunday. The spoon was quickly abandoned; though, she did have fun trying a few times.
She weighed in at 8.46kg (18lb10.5oz) last Saturday. That's a 140g gain in one week (5oz)! Since today is her monthiversary, I'll check her height on the back of the door after her nap when I can get some help. 14-months-old today!
Friday, April 23, 2010
Crabby, Steroid Baby
We made it home safe and sound last Saturday. Shayna is getting to be a much better road-tripper. She slept for a full hour in the car and didn't complain while falling asleep or waking up (a first for post-transplant trips). We spent most of the drive home either playing "what's on your head" where Shayna puts various things on her head and hoots at me to wonder where they went (she can't see them) then show great enthusiasm when she pulls it off to show it to me in the review mirror or dancing to Lady Gaga or Miley Cyrus. (We now listen to both daily as she likes to dance; though, I have order a couple new cds so we can have a little variety.) She also chilled out and ate snacks I passed her.
We had labs in Pittsburgh last Friday that showed a slight decrease in liver numbers but they didn't change this week after 5 days of prednisone (steroid to suppress her immune system) and a slight Prograf in increase (normal/lifetime drug for suppressing the immune system) so we doubled the prednisone dose to 10mg a day. She was already a bit crabby with the 5mg as she squawks in her high-pitched, ear-splitting screech much more readily these days. We'll run labs again next Friday and start her prednisone wean too. As long as the EBV doesn't skirocket, it'll probably be a 6-8 week weaning process.
Speaking of weaning, we're weaning from nursing. Shayna is taking it much better than I am and we've only gone from 6 to 4 sessions a day so far (before and after each bed time). She gets thawed breast milk in her sippy cup during the day so we might have room for food in the freezer again in a couple months. (She also takes cow's milk and water.)
This week's milestones are first steps and climbing stairs. She took her first unassisted steps on Tuesday April 20. The most she's done to date is 3 before grabbing something or falling and she doesn't like walking on her own either. She gets psyched out easily with both standing or walking alone so complains when we let go of her (unless she's playing "standing baby"). She finally figured out what to do with stairs so we use that for physical therapy. Stair climbing combines coordination, balance and strength.
I've posted some new videos on youtube this week for Shayna's adoring fans.
We had labs in Pittsburgh last Friday that showed a slight decrease in liver numbers but they didn't change this week after 5 days of prednisone (steroid to suppress her immune system) and a slight Prograf in increase (normal/lifetime drug for suppressing the immune system) so we doubled the prednisone dose to 10mg a day. She was already a bit crabby with the 5mg as she squawks in her high-pitched, ear-splitting screech much more readily these days. We'll run labs again next Friday and start her prednisone wean too. As long as the EBV doesn't skirocket, it'll probably be a 6-8 week weaning process.
Speaking of weaning, we're weaning from nursing. Shayna is taking it much better than I am and we've only gone from 6 to 4 sessions a day so far (before and after each bed time). She gets thawed breast milk in her sippy cup during the day so we might have room for food in the freezer again in a couple months. (She also takes cow's milk and water.)
This week's milestones are first steps and climbing stairs. She took her first unassisted steps on Tuesday April 20. The most she's done to date is 3 before grabbing something or falling and she doesn't like walking on her own either. She gets psyched out easily with both standing or walking alone so complains when we let go of her (unless she's playing "standing baby"). She finally figured out what to do with stairs so we use that for physical therapy. Stair climbing combines coordination, balance and strength.
These are the back deck stairs and the rock works as motivation because she's climbing to reach a goal.
I've posted some new videos on youtube this week for Shayna's adoring fans.
Friday, April 16, 2010
Plan Change: HOME TOMORROW!
Shayna's liver has a case of Mild Rejection with no trace of damage from the EBV. We will slightly up her dose of Prograf and put her on Prednisone (a steroid) to mildly suppress her immune system some more. Yes, this is playing with fire as a lowered immune system gives the EBV a chance to proliferate. We'll be back to weekly labs at NRV Carilion and just hope things get better and the EBV doesn't go crazy. I've got to pack and clean the Ronald McDonald room and I do not drive well when tired so we're heading home first thing in the morning. Yay!!!
Thursday, April 15, 2010
2 week minimum
All I know is something isn't right, which means we're not going home tomorrow but more than likely being admitted for 2-3 days of inpatient treatment followed by at least 1 week outpatient observation. Yuck. We'll find out tomorrow what that "something" is.
On a brighter note, Shayna and I walked to a really nice, little park about 1/2 mile from the Ronald McDonald we're staying at in the morning. Shayna spent a lot of time swinging and a little time exploring the other play equipment. We also had a lovely visit with Gerry and Judy where Shayna got to admire their koi pond.
On a happy baby note: One of my favorite things about Shayna these days is her desire for a name for everything and how she likes to show it off if she knows/likes something. She makes sure I see all the big lights in the RM dining room, the cars or trucks that catch her eye, the birds she spots, etc. (She also expects me to name all the people we see walking past us; I just stick with man, woman, girl, boy or baby for that.) She's just so happy when she has names for things or I stop to show her something she didn't see (like the "pretty flowers" which always gets a grin out of her).
On a brighter note, Shayna and I walked to a really nice, little park about 1/2 mile from the Ronald McDonald we're staying at in the morning. Shayna spent a lot of time swinging and a little time exploring the other play equipment. We also had a lovely visit with Gerry and Judy where Shayna got to admire their koi pond.
On a happy baby note: One of my favorite things about Shayna these days is her desire for a name for everything and how she likes to show it off if she knows/likes something. She makes sure I see all the big lights in the RM dining room, the cars or trucks that catch her eye, the birds she spots, etc. (She also expects me to name all the people we see walking past us; I just stick with man, woman, girl, boy or baby for that.) She's just so happy when she has names for things or I stop to show her something she didn't see (like the "pretty flowers" which always gets a grin out of her).
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