Showing posts with label grist for the mill. Show all posts
Showing posts with label grist for the mill. Show all posts
Wednesday, May 9, 2012
Truly lovely
I received an e-mail late last night sharing this video.
My friend who sent it to me described it best - breathtaking.
If you have a few minutes, please please watch it.
It is about marriage. And, as a believer, I am so thankful for "the great cloud of witnesses" that we know surround us as written in the book of Hebrews. Ian and Larissa are truly witnesses of Christ's amazing love. This young couple certainly challenge me to press on in marriage and to choose to love every day.
I hope it encourages and blesses you, too!
Please click HERE to read about and watch a short video about This Momentary Marriage - the Story of Ian and Larissa.
Tuesday, March 13, 2012
Cranio Facial Team Appointment
Another one of Lily's favorite things to play with: a box!
It has been a little more than 3 months since Lily's palate surgery, and a little over 5 months since the last time we had a team appointment at UCSF.
Just to give you a little idea of how crazy life can be at our house. . .
Dave and I had planned a while ago that both of us would be there are her appointment. We asked 5 months ago for a Monday appointment since Dave's Mondays are a bit more flexible schedule-wise. So, Monday, March 12th at 8:30 am has been on our calendar for literally months. We had made arrangements to drop off the two older boys at a family friend's house at 7am so that they could drive the boys to Chinese school which starts at 8:30am. We had made arrangements with another family to pick up the boys at noon. These team appointments can be long, so we were not sure when we could come back to pick up the boys. Aaron, of course, would be in tow, armed with his trusty iPad to pass away the time at the clinic.
But our whole plan went into file 13 though.
At about midnight on Sunday night, Dave and I noticed a glub glub sound coming from our bathroom. Then sewage started backing up out of our master bedroom toilet. When Dave investigated outside, he saw that sewage would make a puddle in our side yard every time there was a flush. Dave, bless his heart, was the one who cleaned up the back up on our bathroom floor. Thankfully it did not reach the carpet. I told Dave that I HAD to go to sleep as we decided Dave would stay home the next morning to call the plumber. I knew that I had to wake up at 6:30am at the latest (which would feel like 5:30 because of the time change just the day before) in order to get on the road by 7am in order to get to UCSF with ample time to park (not an easy feat) and walk to the clinic. I half slept while hearing Dave exclaim and mutter every now and then, "This is so gross," as he was on his hands and knees wiping up and disinfecting the mess in the adjoining bathroom. Yes, I have a wonderful husband!
Anyway, Dave ended up taking the boys to school and keeping Aarbear. Lily and I went on our merry way the next morning and made it to the clinic on time.
We saw the speech pathologist, the geneticist, the dentist, and the plastic surgeon. I won't bore you with too many details. . . but basically, here is the news:
1) No fistula! Woohoo - you know we were worried about this. The two little holes near her gumline are supposed to be there and will be repaired with the bone graft when she is 8 or 9 years old.
2) The geneticist feels that since Lily is developing well over all and making good progress (and the fact that her microarray came back negative) that the cleft is an isolated issue. He says he will see her at one of her regular team appointments in 18 months! Yahoo!
3) The speech pathologist is concerned that Lily's palate may be too short. It was hard to get speech samples because my Lily girl was very apprehensive of strange people asking her to perform on cue. Doctor's offices are places of suspicion (understandably so!). However, I told a bit to the pathologist about how Lily has not had many new sounds, even since her palate repair. She took a look (while Lily screamed bloody murder) and said that the palate looks "a little short." The concern is that if it is too short, she may have something called velopharyngeal insufficiency - which basically means she will not be able to block air from escaping into her nasal cavity which will make her unable to produce many sounds. The only consonant sounds that Lily can make right now are: m, n, w, l (kind of), y and b (although it sounds more like m).
4) But then, when the plastic surgeons and the dentist looked at her, they said that her palate looked ok - for sure not a cut and dry case where we could say it is too short. Also, they said that 3 months post op is way too soon to tell. And that since she had her surgery later (21 months as opposed to most U.S. born cleft babies have their palates repaired by their first birthday), the speech would be slower in coming. The muscles would also be slower in functioning properly. When I asked Dr. P, "So. . . it is too soon to worry." He answered very reassuringly, "Don't worry."
Ha! I am trying not to :-).
I have to admit I was a bit teary when I heard that my daughter may have VPI and need another surgery to correct it. I think that I just need to trust the Lord with this. I have been praying, "Lord, please help Lily to learn how to talk." But I think now I should change my prayer to, "Lord, please give me peace to trust You to take care of Lily."
When I shared some of this with a friend, she told me, "Lily is happy and loved."
Yes, that is true. She is both of those things.
We are going to try a short course (6-8 weeks) of speech therapy with a speech therapist who is familiar with clefts. We should know more at the end of that time. VPI is difficult to diagnose, and there is nothing that the surgeon would do at this point even if we knew for sure for sure that she has it. It would be likely close to a year before operating on her again. So - the Lord is asking me to wait on Him. Have I told you how I really stink at waiting? I do. There is nothing to be done but wait.
And trust Him.
And love on Lily, and nurture her and communicate with her in our own special way. The girl is VERY communicative, even without a lot of spoken words.
If you remember, please pray for Lily (and me - I think that all of this is showing me, it's ME not her that is having a hard time with this). I know that the Lord has special grace for little girls and moms of many children.
It has been a little more than 3 months since Lily's palate surgery, and a little over 5 months since the last time we had a team appointment at UCSF.
Just to give you a little idea of how crazy life can be at our house. . .
Dave and I had planned a while ago that both of us would be there are her appointment. We asked 5 months ago for a Monday appointment since Dave's Mondays are a bit more flexible schedule-wise. So, Monday, March 12th at 8:30 am has been on our calendar for literally months. We had made arrangements to drop off the two older boys at a family friend's house at 7am so that they could drive the boys to Chinese school which starts at 8:30am. We had made arrangements with another family to pick up the boys at noon. These team appointments can be long, so we were not sure when we could come back to pick up the boys. Aaron, of course, would be in tow, armed with his trusty iPad to pass away the time at the clinic.
But our whole plan went into file 13 though.
At about midnight on Sunday night, Dave and I noticed a glub glub sound coming from our bathroom. Then sewage started backing up out of our master bedroom toilet. When Dave investigated outside, he saw that sewage would make a puddle in our side yard every time there was a flush. Dave, bless his heart, was the one who cleaned up the back up on our bathroom floor. Thankfully it did not reach the carpet. I told Dave that I HAD to go to sleep as we decided Dave would stay home the next morning to call the plumber. I knew that I had to wake up at 6:30am at the latest (which would feel like 5:30 because of the time change just the day before) in order to get on the road by 7am in order to get to UCSF with ample time to park (not an easy feat) and walk to the clinic. I half slept while hearing Dave exclaim and mutter every now and then, "This is so gross," as he was on his hands and knees wiping up and disinfecting the mess in the adjoining bathroom. Yes, I have a wonderful husband!
Anyway, Dave ended up taking the boys to school and keeping Aarbear. Lily and I went on our merry way the next morning and made it to the clinic on time.
We saw the speech pathologist, the geneticist, the dentist, and the plastic surgeon. I won't bore you with too many details. . . but basically, here is the news:
1) No fistula! Woohoo - you know we were worried about this. The two little holes near her gumline are supposed to be there and will be repaired with the bone graft when she is 8 or 9 years old.
2) The geneticist feels that since Lily is developing well over all and making good progress (and the fact that her microarray came back negative) that the cleft is an isolated issue. He says he will see her at one of her regular team appointments in 18 months! Yahoo!
3) The speech pathologist is concerned that Lily's palate may be too short. It was hard to get speech samples because my Lily girl was very apprehensive of strange people asking her to perform on cue. Doctor's offices are places of suspicion (understandably so!). However, I told a bit to the pathologist about how Lily has not had many new sounds, even since her palate repair. She took a look (while Lily screamed bloody murder) and said that the palate looks "a little short." The concern is that if it is too short, she may have something called velopharyngeal insufficiency - which basically means she will not be able to block air from escaping into her nasal cavity which will make her unable to produce many sounds. The only consonant sounds that Lily can make right now are: m, n, w, l (kind of), y and b (although it sounds more like m).
4) But then, when the plastic surgeons and the dentist looked at her, they said that her palate looked ok - for sure not a cut and dry case where we could say it is too short. Also, they said that 3 months post op is way too soon to tell. And that since she had her surgery later (21 months as opposed to most U.S. born cleft babies have their palates repaired by their first birthday), the speech would be slower in coming. The muscles would also be slower in functioning properly. When I asked Dr. P, "So. . . it is too soon to worry." He answered very reassuringly, "Don't worry."
Ha! I am trying not to :-).
I have to admit I was a bit teary when I heard that my daughter may have VPI and need another surgery to correct it. I think that I just need to trust the Lord with this. I have been praying, "Lord, please help Lily to learn how to talk." But I think now I should change my prayer to, "Lord, please give me peace to trust You to take care of Lily."
When I shared some of this with a friend, she told me, "Lily is happy and loved."
Yes, that is true. She is both of those things.
We are going to try a short course (6-8 weeks) of speech therapy with a speech therapist who is familiar with clefts. We should know more at the end of that time. VPI is difficult to diagnose, and there is nothing that the surgeon would do at this point even if we knew for sure for sure that she has it. It would be likely close to a year before operating on her again. So - the Lord is asking me to wait on Him. Have I told you how I really stink at waiting? I do. There is nothing to be done but wait.
And trust Him.
And love on Lily, and nurture her and communicate with her in our own special way. The girl is VERY communicative, even without a lot of spoken words.
If you remember, please pray for Lily (and me - I think that all of this is showing me, it's ME not her that is having a hard time with this). I know that the Lord has special grace for little girls and moms of many children.
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