It seemed to take forever to finally get Bella in to see her primary care doctor and start the process of having her evaluated developmentally. Most of the lengthy delay is due to scheduling issues and enrollment issues with Tricare, and part of it is probably due to having just endured a major surgery and hospitalization with Lilly.
During this time, we have been watching Bella make such amazing gains in so many areas--gross motor, fine motor, language--our concerns about her "delayed development/low intelligence" have been pretty minimal. Mostly, she seems to be delayed socially/emotionally and acts more like a 4 year old than a 5--almost 6--year old much of the time. But even in those areas she is showing progress. So the delay in getting her in to be seen wasn't cause for too much concern. I would just find myself wondering now and then "I wonder how old she really is?" or if folks ask us her age, I sometimes find myself not knowing exactly how to answer.
In any event, it feels good to finally be moving forward in having Bella evaluated. This week, she saw her PCM, began the "catch up" process in her immunizations (we are assuming that none of the vaccinations she is said to have received in China were effective--such was the case with Lilly and it made more sense just to go ahead and start over than to due blood titres to check what immunities might actually be there), had a blood draw, and had a bone age x-ray to determine whether the estimated age assigned to Bella--when she was found abandoned in December of 2009--is accurate.
The bone age testing showed that, while her Chinese birth certificate states that she is currently 5 years and 10 months old (turning 6 in June), her bone age shows that she is roughly 5 years 0 months old. So many factors can play into bone growth, however, making the margin of error for such testing roughly an 18-month range. So the results fall within that margin and there is no compelling reason to attempt to have her birth certificate changed or her age revised. It just means that she will be starting kindergarten a year "late" (but it seems right on time to us!)
Her PCM also gave us a referral to see a developmental pediatrician as well as a pediatric opthalmologist (we are suspicious she may have some vision issues and/or color blindness). Those visits will take place in the next 6-8 weeks or so, and it will be good to have a developmental pediatrician's perspective on her development as well.
In other news, today Bella went to Sunday School with Lilly for the first time and had a great time. She and Lilly have been singing "Praise Ye the Lord, Hallelujah!" all day long together. It's fun to hear Bella say "JEsus" and try to sing the songs!
And I realized after posting my last post about Bella's language learning, that I forgot a dozen or more other English words that she uses regularly...I can't keep up!
So, there you have it. Next hurdle, getting her social security card...
Sunday, April 29, 2012
Thursday, April 26, 2012
The Snowball of Learning is Rolling...
...and it's fun to watch it pick up speed everyday as Bella's brain makes connections and learns new things.
Everyday we hear new English words coming out of her mouth. Sometimes she simply repeats words for the fun of hearing the sounds come out of her own mouth, but usually she uses these words with a degree of comprehension. She notices phrases that are familiar when hearing them on TV or radio. She repeats new phrases that she hears others saying--in the neighborhood, shopping, at church, etc.
Backing up, she and I still speak Chinese all day long. I encourage her to speak English to others when we're out or with friends, and I sometimes will repeat phrases in English after I've said them in Chinese. But that's exhausting and for now, I want to focus on keeping her Chinese as much as we can. She and Lilly mostly speak Chinese to one another when they are playing--it has been equally fun to watch the Chinese synapses in Lilly's brain begin to fire again. Sometimes Lilly's word order is reflective of English grammar but she inserts the Chinese words she is hearing me use with Bella. Bella seems to understand Lilly's Chinese with no problem.
Chinglish is beginning to kick in for Bella. For example, the Chinese word for "this one" is "zhe ge" (pronounced with a "j" sound). Bella has turned the English "this one" into a Chinglish "zhish one."
Some of her growing list of new Enlish vocabulary words of late (the ones that I can remember right now...I really need to write things down as she says them so I can remember!):
One of Bella's favorite things to do is to simply write. She loves paper and pencils and pens and crayons and markers. She and Lilly spend hours simply on the floor with papers between them, with Bella attempting to copy letters. Bella cannot walk past a sign without searching the words for letters that she recognizes--mostly words that start family members' names such as "M--Mama," "L--Lilly," "A--Anna,", "B-Bella and Baba" Her writing has really progressed from just scribbles to more purposeful lines that are actually starting to resemble letters. She says she can't wait to go to school with Lilly so she can learn to write too.
Everyday we hear new English words coming out of her mouth. Sometimes she simply repeats words for the fun of hearing the sounds come out of her own mouth, but usually she uses these words with a degree of comprehension. She notices phrases that are familiar when hearing them on TV or radio. She repeats new phrases that she hears others saying--in the neighborhood, shopping, at church, etc.
Backing up, she and I still speak Chinese all day long. I encourage her to speak English to others when we're out or with friends, and I sometimes will repeat phrases in English after I've said them in Chinese. But that's exhausting and for now, I want to focus on keeping her Chinese as much as we can. She and Lilly mostly speak Chinese to one another when they are playing--it has been equally fun to watch the Chinese synapses in Lilly's brain begin to fire again. Sometimes Lilly's word order is reflective of English grammar but she inserts the Chinese words she is hearing me use with Bella. Bella seems to understand Lilly's Chinese with no problem.
Chinglish is beginning to kick in for Bella. For example, the Chinese word for "this one" is "zhe ge" (pronounced with a "j" sound). Bella has turned the English "this one" into a Chinglish "zhish one."
Some of her growing list of new Enlish vocabulary words of late (the ones that I can remember right now...I really need to write things down as she says them so I can remember!):
- All done!
- Please
- Good Girl!
- Sank You! (Thank you)
- Hold on!
- Let's go (said with an extra syllable so it sounds like "Let's-A go!"
- Night NIght
- Bye Bye
- See ya later.
- Hi!
- cold
- hot
- itchy (always said in a very whiney tone of voice for some reason)
- brush teeth
- neeeeeed help!
- here you go.
- Love you!
- funny!
One of Bella's favorite things to do is to simply write. She loves paper and pencils and pens and crayons and markers. She and Lilly spend hours simply on the floor with papers between them, with Bella attempting to copy letters. Bella cannot walk past a sign without searching the words for letters that she recognizes--mostly words that start family members' names such as "M--Mama," "L--Lilly," "A--Anna,", "B-Bella and Baba" Her writing has really progressed from just scribbles to more purposeful lines that are actually starting to resemble letters. She says she can't wait to go to school with Lilly so she can learn to write too.
Wednesday, April 18, 2012
The Plague
So so good to be home. So so good to sleep in our own bed and drink our own coffee. So good to be without ICU IVs, monitors beeping, X-ray machines rolling through, sweet nurses taking vitals, and residents making rounds in the wee morning hours after rough sleep on a hard bedside bench. Too bad we are as sick as dogs here. At least we get to be sick at home.
So, backing up a bit (and moving away from the little pity party--sorry), I know my last post said we might be discharged early this week. Dr. Campbell saw us last thing Friday afternoon, explained we'd do CT and X-ray on Monday and after he'd looked her over, she might go home Monday or Tuesday.
Lilly, however, had other plans. The PICU team that came through on Saturday morning took one look at her running around playing with Bella, totally free of IVs, O2, and any other type of tube or attachment, and said "this child does not belong in the hospital, let alone the PICU. It's orthopedics' call, but you may get to go home today."
We were not going to turn down the chance to break free, and were thrilled when, by 9pm or so, our amazing PICU team and the ortho residents had managed to get us in for CTs & X-rays, changed dressings, and written discharge orders. By 11pm we were at Grammy's house. Lilly played happily all day Sunday with her cousins, riding tricycles, swinging on the swings, and playing around the house. When we wanted her to "rest," we let her watch some TV with Bella. Bella fell asleep; Lilly did not. She's tough. And apparently not tired.
Monday morning early, we headed back to CHOP for a quick stop in Dr. Campbell's clinic to get clearance to head to Virginia (and schedule her next expansion--August 14th). By the time Anna was getting off the bus from school, we were walking in the door at home. Aaaah. Home.
But, yes, as I mentioned, we are sick. It started with me--a little tickle in my chest and small cough on Friday afternoon and into Saturday. We were discharged late Saturday night, and by the evening time I felt miserable. Feverish, chills, painful cough, body aches, headache. Good to be away from the hospital and with family members that wanted to take my little ones from me and play so I could go nap. Bless their hearts. I felt so miserable that every time I would lay down for a nap I couldn't help but cry a little bit as I fitfully dozed. Yuck. Fevers up and down Sunday and through Monday. Tom succumbed MOnday afternoon at work and headed home to bed as well.
My folks, who were going to leave once we arrived home MOnday but decided to stay to help when they saw how bad I felt, agreed to leave at my urging once they knew Tom had it too. Not worth the risk after my mom's lengthy pneumonia hospitalization in Florida last year following Lilly's surgery.
Today, Lilly (who has had a little cough for a few days) started with the fevers and the more violent coughing as well. She is still tough, but it's clear she's not feeling great.
We're just hoping Bella and Jared and Anna (and the wide swath of people--virtually dozens of family members--we have encountered between CHOP and home) do not acquire this bug either.
Why is it I always find myself saying "once ___ is over things will get more normal again...?" And yet, I'm saying it again. Once we are all well and Lilly is back to school, we can get back into the swing of things again. For at least 7 weeks until summer vacation starts--yikes!
Oh, and BTW, you need to stop by here and read my Mom's take on being in charge of my children last week...she is hysterical. She made me laugh so hard I couldn't stop coughing.
So, backing up a bit (and moving away from the little pity party--sorry), I know my last post said we might be discharged early this week. Dr. Campbell saw us last thing Friday afternoon, explained we'd do CT and X-ray on Monday and after he'd looked her over, she might go home Monday or Tuesday.
Lilly, however, had other plans. The PICU team that came through on Saturday morning took one look at her running around playing with Bella, totally free of IVs, O2, and any other type of tube or attachment, and said "this child does not belong in the hospital, let alone the PICU. It's orthopedics' call, but you may get to go home today."
We were not going to turn down the chance to break free, and were thrilled when, by 9pm or so, our amazing PICU team and the ortho residents had managed to get us in for CTs & X-rays, changed dressings, and written discharge orders. By 11pm we were at Grammy's house. Lilly played happily all day Sunday with her cousins, riding tricycles, swinging on the swings, and playing around the house. When we wanted her to "rest," we let her watch some TV with Bella. Bella fell asleep; Lilly did not. She's tough. And apparently not tired.
Monday morning early, we headed back to CHOP for a quick stop in Dr. Campbell's clinic to get clearance to head to Virginia (and schedule her next expansion--August 14th). By the time Anna was getting off the bus from school, we were walking in the door at home. Aaaah. Home.
But, yes, as I mentioned, we are sick. It started with me--a little tickle in my chest and small cough on Friday afternoon and into Saturday. We were discharged late Saturday night, and by the evening time I felt miserable. Feverish, chills, painful cough, body aches, headache. Good to be away from the hospital and with family members that wanted to take my little ones from me and play so I could go nap. Bless their hearts. I felt so miserable that every time I would lay down for a nap I couldn't help but cry a little bit as I fitfully dozed. Yuck. Fevers up and down Sunday and through Monday. Tom succumbed MOnday afternoon at work and headed home to bed as well.
My folks, who were going to leave once we arrived home MOnday but decided to stay to help when they saw how bad I felt, agreed to leave at my urging once they knew Tom had it too. Not worth the risk after my mom's lengthy pneumonia hospitalization in Florida last year following Lilly's surgery.
Today, Lilly (who has had a little cough for a few days) started with the fevers and the more violent coughing as well. She is still tough, but it's clear she's not feeling great.
We're just hoping Bella and Jared and Anna (and the wide swath of people--virtually dozens of family members--we have encountered between CHOP and home) do not acquire this bug either.
Why is it I always find myself saying "once ___ is over things will get more normal again...?" And yet, I'm saying it again. Once we are all well and Lilly is back to school, we can get back into the swing of things again. For at least 7 weeks until summer vacation starts--yikes!
Oh, and BTW, you need to stop by here and read my Mom's take on being in charge of my children last week...she is hysterical. She made me laugh so hard I couldn't stop coughing.
Friday, April 13, 2012
On Solid Ground
What an amazing day today.
First of all, thanks to the many of you who sent me messages or left FB comments of encouragement--you're awesome. And thanks to those of you who were prayer warriors for all of us today. It is so evident to me that God is hearing and answering our prayers.
It feels good to be off of the rollercoaster, standing on the solid ground of truth. And it feels good to have much to celebrate today:
It is exciting to watch Lilly standing on solid ground, supporting her own weight, and even walking from the room to the play room several times today. She spent much of the day out of bed, and--despite fears overnight that her breathing was not deep enough and her lungs were suffering--she nearly weaned herself entirely from any suupplemental O2 this afternoon, and is on a minimal amount of nasal canula O2 flow tonight just because she tends to desat at night.
She had one of her iVs and her last remaining drain removed today. Each tube removed from her body warrants a little happy dance as that is one step closer to discharge.
She is no longer on regularly scheduled pain meds, but on an as-needed basis, and has been able to stretch out those doses as well.
And last, but not least (forgive me if it's TMI but if you'd had a child go through major surgery you'll understand what a big deal it is) she had her first post op BM today. Hooray. Things are moving.
For her part, Bella had a good day as well and was SO happy to have her sister out of bed an in the play room with her. And you know Lilly is feeling better when the sibling rivalry kicks right back in as well. We spent much time today in the play room making crafts, bowling, and making bead necklaces. They also had a tea party in the room and played with their Bitty Babies (thank you Aunt Wen for passing along Kaylla's old Bitty Baby for Bella!).
And we enjoyed a visit from Grammy and Pop Pop. It's always good to have folks come see us here!
We have light at the end of the tunnel. Dr. Campbell is really happpy with Lilly's progress, and has a few milestones for her to meet but the "D" word (discharge) did come up today...possibly early next week. We need some followup X-rays and a CT scan,and Lilly needs to meet some PT milestones (we'll work on stairs tomorrow).
All in all, everyone's spirits were much better today. Here's hoping for continued progress over the weekend and a speedy return HOME!
First of all, thanks to the many of you who sent me messages or left FB comments of encouragement--you're awesome. And thanks to those of you who were prayer warriors for all of us today. It is so evident to me that God is hearing and answering our prayers.
It feels good to be off of the rollercoaster, standing on the solid ground of truth. And it feels good to have much to celebrate today:
It is exciting to watch Lilly standing on solid ground, supporting her own weight, and even walking from the room to the play room several times today. She spent much of the day out of bed, and--despite fears overnight that her breathing was not deep enough and her lungs were suffering--she nearly weaned herself entirely from any suupplemental O2 this afternoon, and is on a minimal amount of nasal canula O2 flow tonight just because she tends to desat at night.
She had one of her iVs and her last remaining drain removed today. Each tube removed from her body warrants a little happy dance as that is one step closer to discharge.
She is no longer on regularly scheduled pain meds, but on an as-needed basis, and has been able to stretch out those doses as well.
And last, but not least (forgive me if it's TMI but if you'd had a child go through major surgery you'll understand what a big deal it is) she had her first post op BM today. Hooray. Things are moving.
For her part, Bella had a good day as well and was SO happy to have her sister out of bed an in the play room with her. And you know Lilly is feeling better when the sibling rivalry kicks right back in as well. We spent much time today in the play room making crafts, bowling, and making bead necklaces. They also had a tea party in the room and played with their Bitty Babies (thank you Aunt Wen for passing along Kaylla's old Bitty Baby for Bella!).
And we enjoyed a visit from Grammy and Pop Pop. It's always good to have folks come see us here!
We have light at the end of the tunnel. Dr. Campbell is really happpy with Lilly's progress, and has a few milestones for her to meet but the "D" word (discharge) did come up today...possibly early next week. We need some followup X-rays and a CT scan,and Lilly needs to meet some PT milestones (we'll work on stairs tomorrow).
All in all, everyone's spirits were much better today. Here's hoping for continued progress over the weekend and a speedy return HOME!
Thursday, April 12, 2012
Would Someone Please Turn Off the Ride?
...I think I'd like to get off.
Today has been a hard day.
Let me start by saying--and reassuring you--that Lilly is doing great. She is amazing and is making fabulous progress in her recovery. Bella, too, is amazing and is doing a great job of rolling with things here, despite having minimal understanding of what we are doing and why, showing amazing amounts of trust and--even though we sometimes expect even more--great amounts of patience with this whole experience. These girls are amazing. My older two back home--according to Nana and Pap Pap (who are also wonderful)--are amazing too. And I have an amazing husband who is doing his best to make sure Lilly's medical needs are being met well, care for Bella at night, stay plugged into work as much as possible while we're away, and make sure I am doing ok through this experience.
It's this mama that is having a hard time.
A few weeks ago, I alluded to a yet-to-be-written blog post about feelings of guilt and feelings of failure.
Those are two huge emotions. They plague me frequently. Especially lately.
Today was one of those days. Because Bella is pretty quickly bouncing off of the walls in this hospital room, I have felt compelled to get her out of the room to the play room or to roam the hallways or the sidewalks outside when she and Tom are at the hospital during the day. As a result, I have been missing much of Lilly's care and the medical discussions surrounding it. Tom, being a medic, is the better one to take part in these discussions (even though I like to pretend I understand what they are talking about). So I feel like I am not an integral part of Lilly's care and surely Lilly must feel like her mama no longer cares about her the way I used to. Those feelings were affirmed today when, upon my return with Bella after wandering around the hospital for a bit, Lilly declared that "I like Daddy better than you. And I want him to sleep here with me tonight. I don't want you."
Ouch.
Yes, I'm the grown up, and I totally knew what was behind those words. I didn't outwardly react to her words, but simply said "well, I still love you and am glad I can be here with you even though it's harder for me when I want to help you AND Bella." But her words cut into my heart. (side note: I am sleeping at the hospital tonight...as Bella and I were packing up to head out for the evening--and I had reached a place of peace about that prospect--Lilly realized she didn't really mean what she had said and was afraid NOT to have mama here.)
At the same time, when I am in the room and Lilly is needing my attention (and that of her daddy and all the nurses and a crowd of others--as was the case today when her O2 sats rapidly fell through the floor and she was in sudden, excruciating pain) I feel like poor Bella is left to sort of sit quietly in the corner, eating whenever we remember to feed her and whatever we manage to scrape together for her between cafeteria runs and snack bags and the many leftovers from Lilly's tray that she barely touches. It makes me feel like Bella surely feels like a second class citizen in this family at the moment. Even though Bella cannot articulate her feelings in the same way that Lilly can, her nonverbal communication of her feelings is increasingly clear to us.
And in the background of all of those emotions are the ones I feel when I think of my other two kiddos at home whom we left behind for 2 weeks just the month before last, and who are, once again, left at home without mom and dad. Not to mention the feelings of guilt associated with expecting SO MUCH of our extended family during these frequent occasions.
Hospital living is hard. Parenting virtual twins--one of whom is still learning our language and developing age-appropriate skills and behaviors--is hard. Being away from older children is hard. Commmunicating well in a marriage relationship through all of these circumstances is hard.
And so it is time to switch gears...riding the rollercoaster of guilt and failure is no fun and is just not right. Instead, I am will choose to do as Paul instructed: "Rejoice in the Lord always...do not be anxious about anything, but in everytthing, by prayer and supplication, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
So let me express my thanksgiving:
Lilly is recovering so very well. Her pain has been managed really well (love the pain ball!), she is able to sit up with a little dizziness, and today she even stood up and took a few very small steps toward me. She had her chest tube removed today and is slowly being weaned off of her O2--all wonderful steps toward going home.
Bella is doing better than I could even have imagined with all of this. And she is totally charming all the nurses. And our ICU room us directly across the hall from the play room. How awesome is that?
The older kids are faring very well! And I love that our family members are getting to know our kids so much better by living with them for extended periods, especially because the US Air Force is quite likely going to move us far away from family once again in the next year or two.
Tom and Bella have a wonderful hotel room suite tonight a a very reasonable cost thanks to the Ronald McDonald House discount...still hoping for a room at the Ronald McDonald House at some point but the waiting list is long and not many folks are being discharged to open up space.
Yes indeed, my heart and my mind are both in need of guarding in Christ Jesus. Very much so. My very wise Mom once told me "The years are short. It's the days that are long." May I look to Him first thing each day and throughout each moment of these long days.
"But I will sing of your strength; I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my Strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love." Psalm 59:16-17
Today has been a hard day.
Let me start by saying--and reassuring you--that Lilly is doing great. She is amazing and is making fabulous progress in her recovery. Bella, too, is amazing and is doing a great job of rolling with things here, despite having minimal understanding of what we are doing and why, showing amazing amounts of trust and--even though we sometimes expect even more--great amounts of patience with this whole experience. These girls are amazing. My older two back home--according to Nana and Pap Pap (who are also wonderful)--are amazing too. And I have an amazing husband who is doing his best to make sure Lilly's medical needs are being met well, care for Bella at night, stay plugged into work as much as possible while we're away, and make sure I am doing ok through this experience.
It's this mama that is having a hard time.
A few weeks ago, I alluded to a yet-to-be-written blog post about feelings of guilt and feelings of failure.
Those are two huge emotions. They plague me frequently. Especially lately.
Today was one of those days. Because Bella is pretty quickly bouncing off of the walls in this hospital room, I have felt compelled to get her out of the room to the play room or to roam the hallways or the sidewalks outside when she and Tom are at the hospital during the day. As a result, I have been missing much of Lilly's care and the medical discussions surrounding it. Tom, being a medic, is the better one to take part in these discussions (even though I like to pretend I understand what they are talking about). So I feel like I am not an integral part of Lilly's care and surely Lilly must feel like her mama no longer cares about her the way I used to. Those feelings were affirmed today when, upon my return with Bella after wandering around the hospital for a bit, Lilly declared that "I like Daddy better than you. And I want him to sleep here with me tonight. I don't want you."
Ouch.
Yes, I'm the grown up, and I totally knew what was behind those words. I didn't outwardly react to her words, but simply said "well, I still love you and am glad I can be here with you even though it's harder for me when I want to help you AND Bella." But her words cut into my heart. (side note: I am sleeping at the hospital tonight...as Bella and I were packing up to head out for the evening--and I had reached a place of peace about that prospect--Lilly realized she didn't really mean what she had said and was afraid NOT to have mama here.)
At the same time, when I am in the room and Lilly is needing my attention (and that of her daddy and all the nurses and a crowd of others--as was the case today when her O2 sats rapidly fell through the floor and she was in sudden, excruciating pain) I feel like poor Bella is left to sort of sit quietly in the corner, eating whenever we remember to feed her and whatever we manage to scrape together for her between cafeteria runs and snack bags and the many leftovers from Lilly's tray that she barely touches. It makes me feel like Bella surely feels like a second class citizen in this family at the moment. Even though Bella cannot articulate her feelings in the same way that Lilly can, her nonverbal communication of her feelings is increasingly clear to us.
And in the background of all of those emotions are the ones I feel when I think of my other two kiddos at home whom we left behind for 2 weeks just the month before last, and who are, once again, left at home without mom and dad. Not to mention the feelings of guilt associated with expecting SO MUCH of our extended family during these frequent occasions.
Hospital living is hard. Parenting virtual twins--one of whom is still learning our language and developing age-appropriate skills and behaviors--is hard. Being away from older children is hard. Commmunicating well in a marriage relationship through all of these circumstances is hard.
And so it is time to switch gears...riding the rollercoaster of guilt and failure is no fun and is just not right. Instead, I am will choose to do as Paul instructed: "Rejoice in the Lord always...do not be anxious about anything, but in everytthing, by prayer and supplication, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
So let me express my thanksgiving:
Lilly is recovering so very well. Her pain has been managed really well (love the pain ball!), she is able to sit up with a little dizziness, and today she even stood up and took a few very small steps toward me. She had her chest tube removed today and is slowly being weaned off of her O2--all wonderful steps toward going home.
Bella is doing better than I could even have imagined with all of this. And she is totally charming all the nurses. And our ICU room us directly across the hall from the play room. How awesome is that?
The older kids are faring very well! And I love that our family members are getting to know our kids so much better by living with them for extended periods, especially because the US Air Force is quite likely going to move us far away from family once again in the next year or two.
Tom and Bella have a wonderful hotel room suite tonight a a very reasonable cost thanks to the Ronald McDonald House discount...still hoping for a room at the Ronald McDonald House at some point but the waiting list is long and not many folks are being discharged to open up space.
Yes indeed, my heart and my mind are both in need of guarding in Christ Jesus. Very much so. My very wise Mom once told me "The years are short. It's the days that are long." May I look to Him first thing each day and throughout each moment of these long days.
"But I will sing of your strength; I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my Strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love." Psalm 59:16-17
Tuesday, April 10, 2012
A Whole New Dynamic at CHOP
Where to begin?
We had a wonderful weekend with Tom's family in New Jersey celebrating Easter. Bella got to meet many of her cousins and experience her first taste of a Cantilina Sunday dinner, and seemed to truly enjoy herself. It was fun to watch her slowly take it all in as more and more people arrived to hunt for Easter eggs and enjoy brunch at Grammy's on Saturday as well. And it was, as always, just good to see everyone again!
Lilly had begun to show signs of anxiety over the weekend, knowing that the big day to re-insert her VEPTR rods was quickly approaching. For Lilly, the sweetness of knowing she was going to miss a lot of school nearly outweighed the dread of surgery and hospitalization, but by Saturday night, as we read "Curious George goes to the Hospital" before bed together with Bella (who has had incessant questions about the days to come at the hospital), Lilly began to whimper and express her fears.
Totally founded fears.
The surgery today, Dr. Campbell had warned us, would be just as difficult as her initial VEPTR implant since they had had to remove 2 of her 3 rods due to infection. They planned to reinsert the two and expand the remaining third. So I was feeling nearly equally as anxious as Lilly (maybe even more so...but how can one really compare levels of anxiety?)
It has been just a little over a year since her original VEPTRs had been implanted. That surgery was a doozy and recovery was painful and tough. Since that big surgery, she has had 3 other surgeries and 5 other hospitalizations, none of which have been any fun at all. So who can blame her for feeling a little anxious?
So after our lovely Easter weekend, on Monday morning it was time to get down to business. We packed the car and headed to Philly, where Nana and Pap Pap were waiting (after their Easter festivities with my brothers in Baltimore) to scoop up Jared and Anna and take them back to VA for school to start on Tuesday. Meanwhile, Lilly, Bella, Tom, and I hung around CHOP most of Monday for consults with Dr. Campbell, X-rays, lab work, and a consult with anesthesia prior to Lilly's surgery this morning.
Lilly was the first case of the day today with a 6:15 am show time; she was back in the OR by 7:30am. Around 8:50 we got word that they had just begun to open her up, and by about 11:50 or so we got word they were closing. Dr. Campbell was really happy with the results--good tissue coverage in back, successfully separated scar tissue that had attached her lungs to her rib cage (her lungs had actually been herniataing through her ribs slightly), successful reinsertion of the two VEPTRs and successful lengthening of the 3rd remaining one.
Dr. Campbell has started ujsing a new pain management technique called a "pain ball" which injects a local anesthetic to her VEPTR sites, and that seems to really be taking the edge off of her pain. She has had only one morphine rescue all day long, and a little zofran for nausea. She has really been comfortable all day long, praise the Lord--just thirsty. I know the coming days will likely be hard, but I also know my Lilly is a little trooper, ready for the challenge.
The biggest difference between our experience today and previous surgeries (besides being more knowledgable about what to expect rather than blissfully unaware of just how hard this journey can be) is that we now have sweet little Bella in tow.
Normally, Tom and I are able (thanks to fabulous family members who help with Jared and Anna) to both focus on Lilly and take turns taking a break from the hospital room. This arrangement--with me spending nights with Lilly and Tom being my morning "coffee boy" and bringing Starbucks when he arrives from the Ronald McDonald House in the morning--has become comfortable, even though we'd both rather be at home in our own beds drinking our own coffee.
But now, we are taking turns caring for LIlly and entertaining Bella. We have spent a lot of time in the play room and roaming the hallways and going for walks outside today. I am spending a lot of time answering endless questions about what is happening here with Llly ("who is that? Are they here to help Lilly? Is she still sleeping? Does her back hurt? What are they doing to her now? What is that machine? Will we go home tomorrow? Where is your bed, mama? Who is that person? And that person? And why are they wearing gloves? And what's that noise? What did he say? What did she say? What are you doing? What's daddy doing? Where are you going?" And on...and on...and on...)
I'm sure, for Bella, this is all extremely confusing. We were so thankful to have Tom's sister in law, Wen, here for the day to help take care of Bella while we were focused on Lilly. She was able to help reinforce what we've been telling Bella about the likely length of our stay here (Yesterday, after simply getting x-rays, our first stop for our pre op day, Bella said "OK, are we done now? Can we go home?"). She really has no concept--how could she? We briefly discussed letting her ride back to Grammy's house with Aunt Wen where daddy could come back to get her the following evening,but quickly decided against that plan when she showed a disinclination to even go grab lunch downstairs with Aunt Wen while we waited for word from Dr. Cambpell from the OR. The coming days will be filled with lots of playroom trips, and--hopefully--as Lilly feels better, some playtime together in the hospital room. For Tom, his evenings will no longer be his chance to relax and unwind after stressful days at the hospital, but will be spent trying to communicate with his own child who does not yet speak his language and who can be easily frustrated when Mama is not there to help interpret.
So as I type this update, I am enjoying the stillness of not having to answer constant questions and the white noise of the bubbling water from LIlly's chest tube. Tom and Bella have headed to the Ronald McDonald House in Camden NJ for the night (only one night was available, but they'll take it) and I am praying that Lilly, after resting comfortably pretty much all day long, will sleep well tonight. We shall see.
Stay tuned. And thanks, as always, for reading!
We had a wonderful weekend with Tom's family in New Jersey celebrating Easter. Bella got to meet many of her cousins and experience her first taste of a Cantilina Sunday dinner, and seemed to truly enjoy herself. It was fun to watch her slowly take it all in as more and more people arrived to hunt for Easter eggs and enjoy brunch at Grammy's on Saturday as well. And it was, as always, just good to see everyone again!
Lilly had begun to show signs of anxiety over the weekend, knowing that the big day to re-insert her VEPTR rods was quickly approaching. For Lilly, the sweetness of knowing she was going to miss a lot of school nearly outweighed the dread of surgery and hospitalization, but by Saturday night, as we read "Curious George goes to the Hospital" before bed together with Bella (who has had incessant questions about the days to come at the hospital), Lilly began to whimper and express her fears.
Totally founded fears.
The surgery today, Dr. Campbell had warned us, would be just as difficult as her initial VEPTR implant since they had had to remove 2 of her 3 rods due to infection. They planned to reinsert the two and expand the remaining third. So I was feeling nearly equally as anxious as Lilly (maybe even more so...but how can one really compare levels of anxiety?)
It has been just a little over a year since her original VEPTRs had been implanted. That surgery was a doozy and recovery was painful and tough. Since that big surgery, she has had 3 other surgeries and 5 other hospitalizations, none of which have been any fun at all. So who can blame her for feeling a little anxious?
So after our lovely Easter weekend, on Monday morning it was time to get down to business. We packed the car and headed to Philly, where Nana and Pap Pap were waiting (after their Easter festivities with my brothers in Baltimore) to scoop up Jared and Anna and take them back to VA for school to start on Tuesday. Meanwhile, Lilly, Bella, Tom, and I hung around CHOP most of Monday for consults with Dr. Campbell, X-rays, lab work, and a consult with anesthesia prior to Lilly's surgery this morning.
Lilly was the first case of the day today with a 6:15 am show time; she was back in the OR by 7:30am. Around 8:50 we got word that they had just begun to open her up, and by about 11:50 or so we got word they were closing. Dr. Campbell was really happy with the results--good tissue coverage in back, successfully separated scar tissue that had attached her lungs to her rib cage (her lungs had actually been herniataing through her ribs slightly), successful reinsertion of the two VEPTRs and successful lengthening of the 3rd remaining one.
Dr. Campbell has started ujsing a new pain management technique called a "pain ball" which injects a local anesthetic to her VEPTR sites, and that seems to really be taking the edge off of her pain. She has had only one morphine rescue all day long, and a little zofran for nausea. She has really been comfortable all day long, praise the Lord--just thirsty. I know the coming days will likely be hard, but I also know my Lilly is a little trooper, ready for the challenge.
The biggest difference between our experience today and previous surgeries (besides being more knowledgable about what to expect rather than blissfully unaware of just how hard this journey can be) is that we now have sweet little Bella in tow.
Normally, Tom and I are able (thanks to fabulous family members who help with Jared and Anna) to both focus on Lilly and take turns taking a break from the hospital room. This arrangement--with me spending nights with Lilly and Tom being my morning "coffee boy" and bringing Starbucks when he arrives from the Ronald McDonald House in the morning--has become comfortable, even though we'd both rather be at home in our own beds drinking our own coffee.
But now, we are taking turns caring for LIlly and entertaining Bella. We have spent a lot of time in the play room and roaming the hallways and going for walks outside today. I am spending a lot of time answering endless questions about what is happening here with Llly ("who is that? Are they here to help Lilly? Is she still sleeping? Does her back hurt? What are they doing to her now? What is that machine? Will we go home tomorrow? Where is your bed, mama? Who is that person? And that person? And why are they wearing gloves? And what's that noise? What did he say? What did she say? What are you doing? What's daddy doing? Where are you going?" And on...and on...and on...)
I'm sure, for Bella, this is all extremely confusing. We were so thankful to have Tom's sister in law, Wen, here for the day to help take care of Bella while we were focused on Lilly. She was able to help reinforce what we've been telling Bella about the likely length of our stay here (Yesterday, after simply getting x-rays, our first stop for our pre op day, Bella said "OK, are we done now? Can we go home?"). She really has no concept--how could she? We briefly discussed letting her ride back to Grammy's house with Aunt Wen where daddy could come back to get her the following evening,but quickly decided against that plan when she showed a disinclination to even go grab lunch downstairs with Aunt Wen while we waited for word from Dr. Cambpell from the OR. The coming days will be filled with lots of playroom trips, and--hopefully--as Lilly feels better, some playtime together in the hospital room. For Tom, his evenings will no longer be his chance to relax and unwind after stressful days at the hospital, but will be spent trying to communicate with his own child who does not yet speak his language and who can be easily frustrated when Mama is not there to help interpret.
So as I type this update, I am enjoying the stillness of not having to answer constant questions and the white noise of the bubbling water from LIlly's chest tube. Tom and Bella have headed to the Ronald McDonald House in Camden NJ for the night (only one night was available, but they'll take it) and I am praying that Lilly, after resting comfortably pretty much all day long, will sleep well tonight. We shall see.
Stay tuned. And thanks, as always, for reading!
Thursday, April 5, 2012
Gearing Up.
Wouldn't want to get too comfortable in our new family dynamics or routines, now, would we? No, never. I would have to change the title of this blog if we did.
Now that Bella has been home for nearly 6 weeks, it is time to head back up to CHOP and proceed with Lilly's VEPTR treatments. Yes, that means surgery.
Here's the plan:
We will head first to New Jersey for Easter weekend to spend a few fun-filled days with the Cantilina Clan, allowing Bella to meet the gaggle of cousins, aunts, uncles, and Grammy and Pop Pop (whom she has met only on skype so far). Hoping she'll still want to keep us after witnessing the true chaos of a Cantilina Sunday dinner--with the fun exponentially compounded by the annual Cantilina Easter Egg hunt courtesy of Auntie Em. Even the older kiddos are excited about attending this annual event, which they have only once previously in their entire lives been able to attend. It is epic.
On Monday, Lilly will see Dr. Campbell and have lab work done prior to her surgery (on Tuesday the 10th). Following this office visit, Tom will drive Jared and Anna south to meet up with Nana and Pap Pap somewhere between Baltimore and Philly on I-95 to hand them off and let Nana and Pap Pap take them back to VA to get ready for school to start back up on Tuesday. Tom will then drive back to Philly to meet up with Lilly, Bella (who is not anywhere near ready to be left with family members while we're gone with Lilly), and me.
We are praying that we are able to get a room at the Ronald McDonald House so that there are many resources for entertaining Bella during Lilly's hospitalization.
Then Tuesday is surgery day. Because Lilly's infection has been successfully eradicated (praise the Lord!), it's time to put those rods back in her back to help straighten her spine and open her chest cavity, allowing her lungs and her heart to have room to function properly, especially as she grows. So Dr. Campbell will work his magic and--Lord willing--Lilly will soon regain the height she lost when the rods were removed. Dr. C told us to expect this surgery to be every bit as difficult as her initial VEPTR implant surgery was last February (see here to re-read all about that big day or navigate to that general time frame last year if you like!), so we are expecting probably a 7-10 day hospitalization. Maybe longer, maybe shorter (please!).
We appreciate your prayers for our family as we face this upcoming surgery with even more trepidation than usual since we will have Bella in tow as well this time.
If anyone wants to send Lilly a card or e-card while we're at CHOP, here is the mailing address and a link that explains how send an e-card:
Child's full name and room number
The Children's Hospital of Philadelphia
34th Street and Civic Center Blvd.
Philadelphia, PA 19104-4399
http://www.chop.edu/ecards/ecards.cfm
Thanks for following along and for your prayers!
Now that Bella has been home for nearly 6 weeks, it is time to head back up to CHOP and proceed with Lilly's VEPTR treatments. Yes, that means surgery.
Here's the plan:
We will head first to New Jersey for Easter weekend to spend a few fun-filled days with the Cantilina Clan, allowing Bella to meet the gaggle of cousins, aunts, uncles, and Grammy and Pop Pop (whom she has met only on skype so far). Hoping she'll still want to keep us after witnessing the true chaos of a Cantilina Sunday dinner--with the fun exponentially compounded by the annual Cantilina Easter Egg hunt courtesy of Auntie Em. Even the older kiddos are excited about attending this annual event, which they have only once previously in their entire lives been able to attend. It is epic.
On Monday, Lilly will see Dr. Campbell and have lab work done prior to her surgery (on Tuesday the 10th). Following this office visit, Tom will drive Jared and Anna south to meet up with Nana and Pap Pap somewhere between Baltimore and Philly on I-95 to hand them off and let Nana and Pap Pap take them back to VA to get ready for school to start back up on Tuesday. Tom will then drive back to Philly to meet up with Lilly, Bella (who is not anywhere near ready to be left with family members while we're gone with Lilly), and me.
We are praying that we are able to get a room at the Ronald McDonald House so that there are many resources for entertaining Bella during Lilly's hospitalization.
Then Tuesday is surgery day. Because Lilly's infection has been successfully eradicated (praise the Lord!), it's time to put those rods back in her back to help straighten her spine and open her chest cavity, allowing her lungs and her heart to have room to function properly, especially as she grows. So Dr. Campbell will work his magic and--Lord willing--Lilly will soon regain the height she lost when the rods were removed. Dr. C told us to expect this surgery to be every bit as difficult as her initial VEPTR implant surgery was last February (see here to re-read all about that big day or navigate to that general time frame last year if you like!), so we are expecting probably a 7-10 day hospitalization. Maybe longer, maybe shorter (please!).
We appreciate your prayers for our family as we face this upcoming surgery with even more trepidation than usual since we will have Bella in tow as well this time.
Please pray for:
- Safe travels to and from NJ this weekend and Philly on Monday.
- Good health in the lead up to Tuesday.
- A successful, safe, and smooth surgery for Lilly.
- Wisdom and strength for Dr. Campbell and his team at CHOP.
- Wisdom and discernment for Tom and me as we care for Lilly and help her team manage her pain and help her get back on her feet post op.
- An extra measure of grace and patience for Tom and me as we not only manage Lilly’s physical and emotional needs during this time, but also as we care for Bella and help her with a fairly big diversion from the routines to which she has just begun to grow accustomed in our family. May Bella’s presence be a fun and helpful thing to Lilly, not an extra drain on each of us during a stressful time. And may Bella not be upset by Mama staying at the hospital with Lilly at night while she goes with Baba to the hotel.
- A smooth and quick recovery for Lilly.
- That a room might be available for us at the Ronald McDonald House in Philly.
- Good health and safety for Jared and Anna, Nana and Pap Pap (Laird and Harriet Parke, my folks) while they are here without us.
If anyone wants to send Lilly a card or e-card while we're at CHOP, here is the mailing address and a link that explains how send an e-card:
Child's full name and room number
The Children's Hospital of Philadelphia
34th Street and Civic Center Blvd.
Philadelphia, PA 19104-4399
http://www.chop.edu/ecards/ecards.cfm
Thanks for following along and for your prayers!
Just Some Spring Break Pics
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| My methodical Lilly! |
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| Bella loving a loaded paintbrush! |
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| Headed to the National Zoo on the metro... |
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| The panda cooperated and let us have a good look! |
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| Catching up on the news on the metro. Good Washingtonian kids. |
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| At the indoor water playground with some friends. |
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| Waiting for Joshua and Abby's play "12th Night" to start--Bella meets her cousins on my side for the first time! |
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| The cute little cousins! |
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| A few of the many cul de sac kids who decided to start up a cul de sac band practice one evening. They were awesome! |
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