Tuesday, February 28, 2012
Surgery on Thursday
And we have a time, too. We need to arrive at Lucille Packard Children's Hospital by 7:20am. Lily's hernia surgery will be at 8:40am. Please pray for her! Thanks!
Wednesday, February 22, 2012
It has been this kind of week
We are all in various stages of recovering from (and relapsing to) the flu. I myself have been laid up the past 4 days with it. But thankfully the fog is finally lifting today! Aaron had it last week and seemed to be better, but then he fell asleep at dinner which is not a good sign (but very cute).
Matt has an earache and threw up last night :-(. Lily seems ok but has goop coming out of her ears :-(. I've been giving her ear drops.
Mercies new every morning. And tomorrow is another day!
Matt has an earache and threw up last night :-(. Lily seems ok but has goop coming out of her ears :-(. I've been giving her ear drops.
Mercies new every morning. And tomorrow is another day!
Thursday, February 9, 2012
Early Start
Lily had a blast during her evaluation today at Early Start. New toys, adults who are trying to engage you and play with you - she loved it! It is amazing how through play these therapists are able to assess children. Her favorite thing - bubbles!
No pictures because while she was playing, a specialist was asking me questions about Lily's skills and behaviors. Everyone there was super nice and evidently loves children. Lily was evaluated on two assessments called the Batelle and the REEL 3. She was not just being evaluated on her speech but other development as well.
She is delayed enough that she does qualify for services! I am glad that she can receive the help she needs. Besides in her expressive and receptive language, the other area she is delayed in is called attention and memory. Remember how I have written about how restless Lily is, and how she has so little attention span? How she will look at books for just a few seconds before wanting to do something else?
Our service coordinator is supposed to call me in the next couple of days to get things underway. I am excited for Lily, and hopeful for her progress.
The specialist also told me that her cleft palate and lip make Lily's speech delay more of a medical issue than a developmental issue (which makes total sense). She advised me to bring it up at the next Cranio facial team appointment with the speech pathologist there at UCSF to examine Lily from a medical standpoint.
An unrelated photo. Lily is very very into shoes right now. Anyone's shoes. She is opinionated about which shoes she wants to wear, is determined to put them on herself (which she can't really do) and if you come to our house and leave your shoes at the front door, she might come and try them on. That's what happened here. Our friend, Guga, came over and Lily was very drawn to his boots!
No pictures because while she was playing, a specialist was asking me questions about Lily's skills and behaviors. Everyone there was super nice and evidently loves children. Lily was evaluated on two assessments called the Batelle and the REEL 3. She was not just being evaluated on her speech but other development as well.
She is delayed enough that she does qualify for services! I am glad that she can receive the help she needs. Besides in her expressive and receptive language, the other area she is delayed in is called attention and memory. Remember how I have written about how restless Lily is, and how she has so little attention span? How she will look at books for just a few seconds before wanting to do something else?
Our service coordinator is supposed to call me in the next couple of days to get things underway. I am excited for Lily, and hopeful for her progress.
The specialist also told me that her cleft palate and lip make Lily's speech delay more of a medical issue than a developmental issue (which makes total sense). She advised me to bring it up at the next Cranio facial team appointment with the speech pathologist there at UCSF to examine Lily from a medical standpoint.
An unrelated photo. Lily is very very into shoes right now. Anyone's shoes. She is opinionated about which shoes she wants to wear, is determined to put them on herself (which she can't really do) and if you come to our house and leave your shoes at the front door, she might come and try them on. That's what happened here. Our friend, Guga, came over and Lily was very drawn to his boots!
Wednesday, February 8, 2012
Pediatric surgery consult
Today we met with the Ped surgeon to talk about repairing Lily's hernias. She has two of them (bilateral inguinal hernias if you want to be technical). She has had them for as long as we know, they were noted on her medical report we reviewed about her when we first found out about her.
Surgery has been set for March 1st. They will be repaired laparoscopically meaning using a camera and two small incisions where something like extended thin "arms" will go in and put in a stitch on each side. It is outpatient and the doctor said that other than not being able to bathe for two days post op, there are not any special instructions. Lily should be up and about right away, which is awesome!
Lots if of waiting room photos because it was supposed to be a short appointment, but yikes we got there at 1:15 and didn't leave until 3:30. Lots of waiting! Fortunately, I had the whole
crew with me and they helped entertain and look after one another.
We would appreciate your prayers for Lily!
Surgery has been set for March 1st. They will be repaired laparoscopically meaning using a camera and two small incisions where something like extended thin "arms" will go in and put in a stitch on each side. It is outpatient and the doctor said that other than not being able to bathe for two days post op, there are not any special instructions. Lily should be up and about right away, which is awesome!
Lots if of waiting room photos because it was supposed to be a short appointment, but yikes we got there at 1:15 and didn't leave until 3:30. Lots of waiting! Fortunately, I had the whole
crew with me and they helped entertain and look after one another.
We would appreciate your prayers for Lily!
Tuesday, February 7, 2012
A week of appointments...
Today we began the first of three appointments for Lily this week. Today she had her ENT follow up. The placing of ear tubes in December was rather overshadowed by her palate surgery, but yes both procedures had been done in one fell swoop.
The good news is that her left ear looks great. The bad news is that the tube in her right ear has fallen out already. It was confirmed that she has fluid in that ear again which means she has dampened hearing in that ear. :-(
The good news is that research has shown that normal hearing in one ear is enough for non school age children to acquire language and speech. Hopefully the other ear tube will stay in longer.
Tomorrow we are off to the pediatric surgeon. Lily has hernias that need to be surgically repaired. It is just a consultation tomorrow, and I will report back with more info.
Please pray for Lily. And me. I feel anxious thinking about all the medical stuff! Thursday we meet with early start in Santa Clara county to have her speech evaluated.
Photos of our trek in San Francisco and then of the happy patient :-). She was not thrilled though with someone looking in and probing her ears.
The good news is that her left ear looks great. The bad news is that the tube in her right ear has fallen out already. It was confirmed that she has fluid in that ear again which means she has dampened hearing in that ear. :-(
The good news is that research has shown that normal hearing in one ear is enough for non school age children to acquire language and speech. Hopefully the other ear tube will stay in longer.
Tomorrow we are off to the pediatric surgeon. Lily has hernias that need to be surgically repaired. It is just a consultation tomorrow, and I will report back with more info.
Please pray for Lily. And me. I feel anxious thinking about all the medical stuff! Thursday we meet with early start in Santa Clara county to have her speech evaluated.
Photos of our trek in San Francisco and then of the happy patient :-). She was not thrilled though with someone looking in and probing her ears.
Saturday, January 28, 2012
Something Hard
Yesterday something happened that was difficult - I am still thinking about it this morning, and it is eating at me.
We were at our homeschool co-op, and while Matthew and Nene were in their classes, I was out in the playground area with Aaron and Lily. They were playing, each doing their own thing, and the weather was beautiful for January! I saw on a step and watched them. Aaron was climbing up and down a play structure, and Lily was going to town with the wood chips that carpet the playground area. Not throwing them, but having fun digging her hands in and letting them trickle out of her hands. Periodically she would make an inquisitive sound and look at me, and I knew she meant, "Look Mama! What is this stuff?"
There were a few other children out there, part of the childcare that goes on while their siblings and parents go to class. Lily and Aaron don't go to the childcare, but I could write another post about that (nothing wrong with the childcare, just trying again to bond and attach with Lily - she is not ready to be left with anyone else at this point).
All of a sudden, this little boy starts walking towards Lily (who is still busy playing with wood chips). He comes right up to her, and pushes her chest with his hand.
I observe, and am unsure about what his intent was. I could not quite believe what I just saw.
Then, the boy makes a little circle and comes back towards Lily, and now comes and pushes her AGAIN - this time with his foot.
He starts to go behind Lily and I can see that more will come if I do not intervene.
I close the gap with a few quick strides and I tell him, "Don't push her." I try to bring him over to me by putting my arm around him, but he is trying to squirm and run away. I hold him firmly and say, "Do not push her. You would not like it if someone bigger than you came over and was pushing and hitting you."
No apology, no eye contact - he wanted to run away, and I let him.
My blood was boiling. I was so enraged and saddened. Silly, right? Probably a 3 or 4 year old. Kids don't have as much maturity or discernment or inhibition. Yes, I get that. No big deal, right? Just shrug it off - kids are kids. But I was MAD.
It makes me so mad to think about anyone being mean to Lily. To any of my kids for that matter, but especially her. And questions spiral within me. Since the boy didn't tell me (and I didn't ask), I wonder, "Why?" Why are you picking on her? Is it because she is smaller than you? Is it because she is the "new kid" as she is not usually out there with them on the playground? Is it as simple as that? Or is it because she looks different? Is it because her nose and mouth look different? Is it because she has a scar? Is it just because it would be interesting to get a reaction?
It made me mad that the world is not a good place. That even in a place I usually feel very safe, I can see how life can be for my children, and especially for my daughter. And you know what, later something similar happened again. Different culprit, though. In the middle of lunch, this time a little girl came over and kicked wood chips onto Lily. Through all of these incidences, Lily was not aware that people were being unkind to her. And I felt thankful for that, and yet fearful, too, of the day she realizes that she looks different from other people.
To be fair, I am sure that if the parents of these children had seen these things happening, they would have intervened. But you know how it is at the playground during lunch hour and how zooey it can get. I know that I cannot watch each of my children 100% all of the time and eat my lunch and talk to other moms at the same time.
When I look at Lily - I can see how beautifully she is doing. She is growing in every way. Learning to love, learning to trust. I have seen her small, malnourished, and tense body fill out and relax little by little. Her smile is infectious, and her eyes are inquisitive, bright, and look at all of us with wonder and adoration.
However, when I change her diaper, I see those scars on her bottom, and on her thighs. Again, it makes me think of how neglected she must have been to have full thickness scarring from diaper rash. How she must have been left in a dirty diaper for hours and hours. How much it must have hurt. How tiny she was when it happened. How nobody responded to her pain. And I want to just scoop her up and tell her, "No more pain, Lily. No more pain."
But then yesterday happened. And it makes me think about how I cannot promise her that. I will not always be there to protect and shield her from it.
What can I do? I know that she is the Lord's. I know that I will now always be there with her when things come up, but He will. As she grows up, she will undoubtedly encounter more questions, and teasing and cruelty because of her differences. The unkindness of human nature and this world just reinforces how we need the Lord.
And even for my other children, too. Because let's face it - we have ALL endured feeling different for any little thing. Not just what we look like, but our dress, but our interests, our beliefs. . .
Oh, and pray for me, too. Boy do I need the Lord to navigate through all of this stuff. And I am sure there is more to come. One gentleman I know with grown children once told me that through the trials and pain of parenting, "The Lord is making me into a *real* Christian."
There was a bit of comfort though.
Towards the end of lunch, I saw Lily on the blacktop, sitting joyfully with a big rubber punch ball, and with Nathan and Nathan's friend Ellie flanked on either side of her. I could hear Nathan explaining to Ellie all of the things that Lily likes to do and can do now. Ellie was smiling and nodding. They made a small, strong unit. I felt reassured and thankful.
I feel a bit better now that I have written this out. I have been interrupted twice since I began my post in the early morning when everyone was still sleeping. Now, Lily is sitting on my lap in her fleece footie pajamas. Her brothers are running around making a slide with all of the pillows and mats we have in the house. I just heard Aaron say, "And Lily can go on it, too! But it might be too dangerous!"
Matthew replied, "Just hold it up! We need more stabilizers!"
Thank the Lord for the mercies of these fun, sweet moments to encourage me through the harder parts :-).
We were at our homeschool co-op, and while Matthew and Nene were in their classes, I was out in the playground area with Aaron and Lily. They were playing, each doing their own thing, and the weather was beautiful for January! I saw on a step and watched them. Aaron was climbing up and down a play structure, and Lily was going to town with the wood chips that carpet the playground area. Not throwing them, but having fun digging her hands in and letting them trickle out of her hands. Periodically she would make an inquisitive sound and look at me, and I knew she meant, "Look Mama! What is this stuff?"
There were a few other children out there, part of the childcare that goes on while their siblings and parents go to class. Lily and Aaron don't go to the childcare, but I could write another post about that (nothing wrong with the childcare, just trying again to bond and attach with Lily - she is not ready to be left with anyone else at this point).
All of a sudden, this little boy starts walking towards Lily (who is still busy playing with wood chips). He comes right up to her, and pushes her chest with his hand.
I observe, and am unsure about what his intent was. I could not quite believe what I just saw.
Then, the boy makes a little circle and comes back towards Lily, and now comes and pushes her AGAIN - this time with his foot.
He starts to go behind Lily and I can see that more will come if I do not intervene.
I close the gap with a few quick strides and I tell him, "Don't push her." I try to bring him over to me by putting my arm around him, but he is trying to squirm and run away. I hold him firmly and say, "Do not push her. You would not like it if someone bigger than you came over and was pushing and hitting you."
No apology, no eye contact - he wanted to run away, and I let him.
My blood was boiling. I was so enraged and saddened. Silly, right? Probably a 3 or 4 year old. Kids don't have as much maturity or discernment or inhibition. Yes, I get that. No big deal, right? Just shrug it off - kids are kids. But I was MAD.
It makes me so mad to think about anyone being mean to Lily. To any of my kids for that matter, but especially her. And questions spiral within me. Since the boy didn't tell me (and I didn't ask), I wonder, "Why?" Why are you picking on her? Is it because she is smaller than you? Is it because she is the "new kid" as she is not usually out there with them on the playground? Is it as simple as that? Or is it because she looks different? Is it because her nose and mouth look different? Is it because she has a scar? Is it just because it would be interesting to get a reaction?
It made me mad that the world is not a good place. That even in a place I usually feel very safe, I can see how life can be for my children, and especially for my daughter. And you know what, later something similar happened again. Different culprit, though. In the middle of lunch, this time a little girl came over and kicked wood chips onto Lily. Through all of these incidences, Lily was not aware that people were being unkind to her. And I felt thankful for that, and yet fearful, too, of the day she realizes that she looks different from other people.
To be fair, I am sure that if the parents of these children had seen these things happening, they would have intervened. But you know how it is at the playground during lunch hour and how zooey it can get. I know that I cannot watch each of my children 100% all of the time and eat my lunch and talk to other moms at the same time.
When I look at Lily - I can see how beautifully she is doing. She is growing in every way. Learning to love, learning to trust. I have seen her small, malnourished, and tense body fill out and relax little by little. Her smile is infectious, and her eyes are inquisitive, bright, and look at all of us with wonder and adoration.
However, when I change her diaper, I see those scars on her bottom, and on her thighs. Again, it makes me think of how neglected she must have been to have full thickness scarring from diaper rash. How she must have been left in a dirty diaper for hours and hours. How much it must have hurt. How tiny she was when it happened. How nobody responded to her pain. And I want to just scoop her up and tell her, "No more pain, Lily. No more pain."
But then yesterday happened. And it makes me think about how I cannot promise her that. I will not always be there to protect and shield her from it.
What can I do? I know that she is the Lord's. I know that I will now always be there with her when things come up, but He will. As she grows up, she will undoubtedly encounter more questions, and teasing and cruelty because of her differences. The unkindness of human nature and this world just reinforces how we need the Lord.
And even for my other children, too. Because let's face it - we have ALL endured feeling different for any little thing. Not just what we look like, but our dress, but our interests, our beliefs. . .
Oh, and pray for me, too. Boy do I need the Lord to navigate through all of this stuff. And I am sure there is more to come. One gentleman I know with grown children once told me that through the trials and pain of parenting, "The Lord is making me into a *real* Christian."
There was a bit of comfort though.
Towards the end of lunch, I saw Lily on the blacktop, sitting joyfully with a big rubber punch ball, and with Nathan and Nathan's friend Ellie flanked on either side of her. I could hear Nathan explaining to Ellie all of the things that Lily likes to do and can do now. Ellie was smiling and nodding. They made a small, strong unit. I felt reassured and thankful.
I feel a bit better now that I have written this out. I have been interrupted twice since I began my post in the early morning when everyone was still sleeping. Now, Lily is sitting on my lap in her fleece footie pajamas. Her brothers are running around making a slide with all of the pillows and mats we have in the house. I just heard Aaron say, "And Lily can go on it, too! But it might be too dangerous!"
Matthew replied, "Just hold it up! We need more stabilizers!"
Thank the Lord for the mercies of these fun, sweet moments to encourage me through the harder parts :-).
Thursday, January 26, 2012
Happy Chinese New Year
We had a small affair over here for Chinese New Year. Lily wore her silks that we purchased for her when we were in China. I bought them in Tianjin before I even met her :-).
Smart girl already knows to smile now for the camera. See that nerf sword Aaron is holding? Lily was parading back and forth with it during dinner, but I could not get a photo. She looked like Mulan swinging that thing and wearing her Chinese silks. Oh yeah, and yes - that IS a nerf gun she is holding. And in the photo above, that is a Pokemon graphic novel she has in her hands. Sigh - she has been schooled by her three older brothers!
We had the Kus over for dinner. Dinner was lots of dumplings (from the frozen section at the local Chinese market - alas, no time for homemade ones). Then we had a worship time with our two families. Here you see the daddies and Matthew and Peter warming up.
Here is what Phil did during the singspiration time.
And for dessert - tang yuan. This is a dessert eaten on the winter solstice in China - a soup with sticky sweet rice balls.
It is the year of the dragon. Happy Chinese New Year!
I do not believe in personality traits and fortunes for the different signs of the Chinese zodiac. However, I was pleased to find out that Lily and I were born 36 years apart - making us both born in the year(s) of the tiger. Also, this gives me even more reason to think of her as "Tiger Lily."
Smart girl already knows to smile now for the camera. See that nerf sword Aaron is holding? Lily was parading back and forth with it during dinner, but I could not get a photo. She looked like Mulan swinging that thing and wearing her Chinese silks. Oh yeah, and yes - that IS a nerf gun she is holding. And in the photo above, that is a Pokemon graphic novel she has in her hands. Sigh - she has been schooled by her three older brothers!
We had the Kus over for dinner. Dinner was lots of dumplings (from the frozen section at the local Chinese market - alas, no time for homemade ones). Then we had a worship time with our two families. Here you see the daddies and Matthew and Peter warming up.
Here is what Phil did during the singspiration time.
And for dessert - tang yuan. This is a dessert eaten on the winter solstice in China - a soup with sticky sweet rice balls.
It is the year of the dragon. Happy Chinese New Year!
I do not believe in personality traits and fortunes for the different signs of the Chinese zodiac. However, I was pleased to find out that Lily and I were born 36 years apart - making us both born in the year(s) of the tiger. Also, this gives me even more reason to think of her as "Tiger Lily."
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