Sunday, February 24, 2008
Isaiah 42:16
"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."
Friday, February 22, 2008
There's good news and then there's bad news...
Celebrating that all good news is a gift from God, we'll share the good news first: Liam passed his swallow study on February 18 with solids with flying colors! So, how does a mother record that in the baby book? "First food: Applesauce with barium, 2/18/08--loved it! Couldn't get enough! In fact, you fussed ardently when the spoon was removed from your mouth each and every time!" I don't know--something is just WRONG with that, don't you think? He is still aspirating on liquids, so we'll continue to use the feeding tube for formula for now. Gwen, his speech therapist, wants to repeat the swallow study at 9 months with liquids from a cup. He just gulps down the formula from a bottle--it's almost like he has no idea that he can slow down and still get enough eventually. He ends up overwhelming his swallow muscles in his throat and can't swallow successfully. So, news bulletin for the week: Liam loves his applesauce. ;)
OK, so the bad news does seem exceptionally bad, but we'll have to qualify that by noting that Lisa was so shocked by the news that she lost all capacity for intelligent thought for the duration of the appointment. It could be that this isn't nearly as awful as it sounds (denial, anyone?). That said, it seems quite likely that Liam will need a surgery in a few months to separate 2 plates in his skull that fused too soon. We were having him evaluated for a helmet (he has a pronounced flat spot on the back of his head that is leading the other side of the back of his head to protrude outward quite significantly), and everyone seemed to be indicating that it was a foregone conclusion that he'd need a helmet. Fine, we were were prepared for that (no big deal--so he'll look like he is the child of overzealous football fan parents).
However, when Lisa got to the appointment all prepared to hear "Well, Liam needs a helmet," she heard instead, "Well, your son has two problems, and a helmet is only likely to fix one of them. Surgery will be required to fix the other one." The 2 plates in question are located in the front and on top of his head (we think). This would be a good time to point out that everything that the doctor said after a certain point in this conversation started sounding like the adults in Charlie Brown cartoons (waahwaahwaah); therefore, Lisa just asked the surgeon to stop talking as she wasn't absorbing anything being said anyway. We should also note that Bill was home caring for Sarah, who was quite ill that day.
In any event, Liam will get a helmet, which should almost totally reshape the back of his head and gives him a 2-3% chance of avoiding the skull surgery to separate the plates. The helmet has a very small chance (note: 100% if God decides to provide His healing touch!) of allowing the forehead to open up and get the space it needs for his brain to continue to develop. Without that space, Liam will suffer eye development problems and brain development problems, making the surgery necessary. There was some comment made about titanium plates and dissolvable screws, but we'll have to get the details about that at a later date. For now, we will concentrate on getting the helmet made for Liam and we'll talk to Dr. Kelly at Vandy in greater detail later about the surgery details.
We suspect it goes without saying that we would greatly appreciate everyone's ongoing prayers for Liam and for our entire family as we face this next obstacle. Prayers for complete healing, financial resources, and (most of all) strength to accept God's will for all of our lives would be most appreciated.
In Christ,
Bill and Lisa
P.S. Liam has started to chuckle!! He especially enjoys his mother's pre-shower Saturday morning "crazy hair," as big sister Sarah refers to it!! ;)
OK, so the bad news does seem exceptionally bad, but we'll have to qualify that by noting that Lisa was so shocked by the news that she lost all capacity for intelligent thought for the duration of the appointment. It could be that this isn't nearly as awful as it sounds (denial, anyone?). That said, it seems quite likely that Liam will need a surgery in a few months to separate 2 plates in his skull that fused too soon. We were having him evaluated for a helmet (he has a pronounced flat spot on the back of his head that is leading the other side of the back of his head to protrude outward quite significantly), and everyone seemed to be indicating that it was a foregone conclusion that he'd need a helmet. Fine, we were were prepared for that (no big deal--so he'll look like he is the child of overzealous football fan parents).
However, when Lisa got to the appointment all prepared to hear "Well, Liam needs a helmet," she heard instead, "Well, your son has two problems, and a helmet is only likely to fix one of them. Surgery will be required to fix the other one." The 2 plates in question are located in the front and on top of his head (we think). This would be a good time to point out that everything that the doctor said after a certain point in this conversation started sounding like the adults in Charlie Brown cartoons (waahwaahwaah); therefore, Lisa just asked the surgeon to stop talking as she wasn't absorbing anything being said anyway. We should also note that Bill was home caring for Sarah, who was quite ill that day.
In any event, Liam will get a helmet, which should almost totally reshape the back of his head and gives him a 2-3% chance of avoiding the skull surgery to separate the plates. The helmet has a very small chance (note: 100% if God decides to provide His healing touch!) of allowing the forehead to open up and get the space it needs for his brain to continue to develop. Without that space, Liam will suffer eye development problems and brain development problems, making the surgery necessary. There was some comment made about titanium plates and dissolvable screws, but we'll have to get the details about that at a later date. For now, we will concentrate on getting the helmet made for Liam and we'll talk to Dr. Kelly at Vandy in greater detail later about the surgery details.
We suspect it goes without saying that we would greatly appreciate everyone's ongoing prayers for Liam and for our entire family as we face this next obstacle. Prayers for complete healing, financial resources, and (most of all) strength to accept God's will for all of our lives would be most appreciated.
In Christ,
Bill and Lisa
P.S. Liam has started to chuckle!! He especially enjoys his mother's pre-shower Saturday morning "crazy hair," as big sister Sarah refers to it!! ;)
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