And we are out of quarantine!! For now...
Yesterday, Lily had her MRI at Mass General in Boston. It went so well! Now we wait to hear from the surgeon to tell us what needs to be done and when it can happen. Lily was a champ! She didn't complain at all, until she came out of anesthesia--then it got really ugly. She was so grouchy!
Our Journey to LilyBeth
Saturday, January 21, 2012
Tuesday, January 17, 2012
Almost Out of Quarantine!
Only 3 more days until Lily's MRI--which is really good, cuz this Mama needs Lily to go back to daycare! She and Josh go to daycare two days a week so I can focus on homeschool projects with the bigger kids. For the last 3 weeks the "Littles" have been home every day; I've even kept them home from church so they don't get exposed to any cold or flu germs. So far it has worked and Lily has not shown any signs of illness (Praise God!). Once she is done with her MRI I will relax a little.
On a super-exciting, God-praising note, Thomas spent a day at Children's Hospital in Boston for endocrine testing. We were told by our local specialists that he would need human growth hormone treatment (he is 9 years old and still wears a size 5T), and that he would never produce testosterone, and that we should consider raising him as a girl. We prayed long and hard for him, and God answered our prayers in a HUGE way. Not only does he produce his own growth hormones, his only testicle (sorry for the explicit language) is normal and is expected to produce testosterone normally. Even better news: He does identify as a male and will be raised as a boy! Wahoo! That's good, since we've been raising him as a boy all along.
Now that this phase with Thomas is over, we can focus on Lily's medical treatment. She, like Thomas, has a diagnosis of gender disorder. We have no doubt that she identifies as a female, but we won't know how much her diagnosis will impact her future until it's here.
Please keep us in your prayers this Friday--January 20th for her MRI.
Thanks
On a super-exciting, God-praising note, Thomas spent a day at Children's Hospital in Boston for endocrine testing. We were told by our local specialists that he would need human growth hormone treatment (he is 9 years old and still wears a size 5T), and that he would never produce testosterone, and that we should consider raising him as a girl. We prayed long and hard for him, and God answered our prayers in a HUGE way. Not only does he produce his own growth hormones, his only testicle (sorry for the explicit language) is normal and is expected to produce testosterone normally. Even better news: He does identify as a male and will be raised as a boy! Wahoo! That's good, since we've been raising him as a boy all along.
Now that this phase with Thomas is over, we can focus on Lily's medical treatment. She, like Thomas, has a diagnosis of gender disorder. We have no doubt that she identifies as a female, but we won't know how much her diagnosis will impact her future until it's here.
Please keep us in your prayers this Friday--January 20th for her MRI.
Thanks
Saturday, January 7, 2012
Seven Months Home
Look who's been home for seven months now! I can hardly believe this is the same little girl I met in Beijing in June.
Lily will be having her MRI on the 20th of January in Boston. I'm trying to quarantine her to keep her from catching a cold. The hospital will not do an MRI if she has even a sniffle!
If you read this post, could you please comment? I'm thinking of deleting the blog. No sense keeping it up if I'm the only one who reads it. Thanks.
Lily will be having her MRI on the 20th of January in Boston. I'm trying to quarantine her to keep her from catching a cold. The hospital will not do an MRI if she has even a sniffle! If you read this post, could you please comment? I'm thinking of deleting the blog. No sense keeping it up if I'm the only one who reads it. Thanks.
Wednesday, December 14, 2011
Medical Update
About a month ago, our pediatric endocrinologist sent both Lily and Thomas in for some blood tests. Thomas' tests were because he isn't growing fast enough. In truth, our 9-year old boy still wears size 5T clothing. That's toddler size! Lily was sent as a "rule out different birth defects" test. Her blood work came back testing positive for testosterone. That means her little body has some type of organ that is producing testosterone. The endocrinologist conferred with Lily's geneticist and urologist to determine what to do next. (She had already had an ultrasound, but it was inconclusive). The team decided to send her to Boston for more in-depth testing. She was sent to Massachusetts General Hospital's Pediatric Urology department.
Yesterday was Lily's appointment. I arranged for two different child care providers, and packed Lily up for the two hour drive to Boston. I had never been to Mass General before, but I quickly learned that it is made up of several buildings interconnected by different hallways and elevator systems. I needed my GPS to find the Radiology department. I found it and got Lily settled for her ultrasound. I absolutely HATE ultrasounds because I want to know what the technician is looking at, but they NEVER tell me! After an hour on the table, we were sent up to Urology. Our appointment was for 1:30pm, but we never even saw the doctor until 2:35pm. I was pretty annoyed by that point. When they did call Lily's name, it was the surgeon himself who came to get us. Seriously! No nurse, or nursing assistant, but the actual doctor came to get us. (I should add that this particular doctor is the Chief Pediatric Urological surgeon, and is known world-wide for his skills.)
During the exam, the doctor explained everything to me in detail. He is the first doctor to actually diagnose Lily. I'm not ready to divulge just yet, but suffice it to say that she is looking at one major surgery next year. The surgeon has high expectations that she will be fine after surgery. He completely won me over with his knowledge and his attention to Lily. He sat with her, played games with her, and then sat with me to answer all my questions.
Lily will have an MRI in January to give the doctor a more detailed view of her internal organs. After the MRI she will have laproscopic surgery to remove an ovary. Finally she will have major re-constructive surgery. I know there are so many people who have more serious needs, but I ask that you pray for our precious girl. She will have to remain in the hospital for several days.
Yesterday was Lily's appointment. I arranged for two different child care providers, and packed Lily up for the two hour drive to Boston. I had never been to Mass General before, but I quickly learned that it is made up of several buildings interconnected by different hallways and elevator systems. I needed my GPS to find the Radiology department. I found it and got Lily settled for her ultrasound. I absolutely HATE ultrasounds because I want to know what the technician is looking at, but they NEVER tell me! After an hour on the table, we were sent up to Urology. Our appointment was for 1:30pm, but we never even saw the doctor until 2:35pm. I was pretty annoyed by that point. When they did call Lily's name, it was the surgeon himself who came to get us. Seriously! No nurse, or nursing assistant, but the actual doctor came to get us. (I should add that this particular doctor is the Chief Pediatric Urological surgeon, and is known world-wide for his skills.)
During the exam, the doctor explained everything to me in detail. He is the first doctor to actually diagnose Lily. I'm not ready to divulge just yet, but suffice it to say that she is looking at one major surgery next year. The surgeon has high expectations that she will be fine after surgery. He completely won me over with his knowledge and his attention to Lily. He sat with her, played games with her, and then sat with me to answer all my questions.
Lily will have an MRI in January to give the doctor a more detailed view of her internal organs. After the MRI she will have laproscopic surgery to remove an ovary. Finally she will have major re-constructive surgery. I know there are so many people who have more serious needs, but I ask that you pray for our precious girl. She will have to remain in the hospital for several days.
Thursday, December 8, 2011
Six-Month Post Placement Report
Can you believe this is the same little girl who was made of toothpick legs and arms? Six months ago LilyBeth could barely walk, now I can't keep her still. She runs EVERYWHERE!
And that's the face that gets her into trouble!
Daddy did her hair. I'm such a lucky wife!
ON the medical front, Lily has undergone so much testing that she could get her own access badge to the lab. As a result of all this testing, we learned that she does have abnormal ovaries and her body is producing testosterone--as China said. We will be going to Boston to meet with the world's leading surgeon for this birth defect. We are so blessed to have health insurance. This could get expensive. Fortunately, once the surgery is complete we will have a complete understanding of her reproductive system.
Monday, October 31, 2011
Happy Halloween!
A Groovy Night
The Princess inside her castle (bounce house)
We are ready for some fun!
Groovy man!
Tuesday, October 18, 2011
Chinatown
Two weekends ago, we took the kids to Chinatown in Boston for Thomas' 9th birthday. They got dressed in their adorable Chinese outfits and we took the "T" into town. They had a blast! We are so blessed by Thomas. He is the sweetest child on the planet. Here's a picture of everyone as we were waiting for the "T".
P.S. It's really hard to get everyone to pay attention at the same time.
P.S. It's really hard to get everyone to pay attention at the same time.
Subscribe to:
Posts (Atom)