Re: UPDATE - Please keep us in your prayers!

[Guest guest]

Thank you so much for everyone's support and prayers today. Here is where we stand....

's head only grew 1 cm. He dropped from the 25th% down to the 10th%. She said that she is not concerned yet as long as he doesn't drop off the chart. We are doing another CT in May and will meet with her again as soon as the CT is done. She said even if he drops off the chart she will look closely at it, but still may not do anything about it. My biggest concern is that if his head is not growing at the rate it should, that it would cause irreversible damage. She said that his head could stay off the chart for a long time before damage occurred, as long as his head is still growing. I feel confident in her...I always pictured that a neurosurgeon would rush him into surgery since that is where they make their money. But she is not even leaning towards it! She is the only dr in the whole area that is doing the spina bifida surgeries on babies still in the womb. So, she is not hurting for business and is one of the best surgeons in the area. I am thrilled that she continues to see us instead of pushing us off on another dr - so she can get a more serious case in there. Anyway...

As far as his band is concerned....She walked in and said his head looked great! His hair is covering the flatness well - and she said that she can definitely tell that he is rounding out. She said that now the band is for cosmetic reasons - but that he can wear it up to 18 months if we want or we could stop now if we wanted, but she recommends that we keep going for a while longer, that we should see some more positive results!

So, overall it went well, but we are still not out of the woods. I will feel better when the next CT is done. Thank you all for the wonderful support! I always read all the posts, but don't get to respond or post very often due to an active child (I just couldn't wait until he was mobile ) and a husband who is jealous of the computer getting my attention instead of him! This is such a supportive group and I know that I couldn't have made it the past few months with out you!

Kimand , Raleigh, NC

-----Original Message-----From: Kendra [mailto:p-nutsmum@...]Sent: Thursday, March 15, 2001 3:34 PMPlagiocephaly Subject: Re: Please keep us in your prayers!

Kim:

How did your appt. go today?

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: QUAN, MICHELLE

'Plagiocephaly '

Sent: Thursday, March 15, 2001 9:51 AM

Subject: RE: Please keep us in your prayers!

Good luck Kim and ! We'll be thinking about you. & (9-20-00)-----Original Message-----From: justbryandkim@... [mailto:justbryandkim@...]Sent: Wednesday, March 14, 2001 11:49 AMPlagiocephaly Subject: Please keep us in your prayers!I strongly believe in the power of prayer, and would appreciate it if you would please keep in your prayers. Tomorrow we visit the neurosurgeon once again (every 2 months) to discuss possible surgery.'s metopic suture is closed as well as his soft spots. The neurosurgeon says that it is still possible for his head to grow (so we have been treating it as plagio), but if he drops off his head growth curve - then he needs surgery to open everything back up to allow growth so his brain will not get squished (not the correct technical term, of course). We visit the neuro every two months to get an accurate picture of his head growth - one month he may drop down, but the next he may catch back up. He has developed some new funky ridges over the past few weeks that have us very concerned. Also, we have not seen much progress with our helmet therapy probably due to these early closures. Please keep him in your prayers. I will update you tomorrow evening when we get home.Thanks, Kim and , Raleigh, NC

[Guest guest]

Kim:

Glad to hear everything went well! )

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: & Kim

Plagiocephaly

Sent: Thursday, March 15, 2001 7:12 PM

Subject: RE: UPDATE - Please keep us in your prayers!

Thank you so much for everyone's support and prayers today. Here is where we stand....

's head only grew 1 cm. He dropped from the 25th% down to the 10th%. She said that she is not concerned yet as long as he doesn't drop off the chart. We are doing another CT in May and will meet with her again as soon as the CT is done. She said even if he drops off the chart she will look closely at it, but still may not do anything about it. My biggest concern is that if his head is not growing at the rate it should, that it would cause irreversible damage. She said that his head could stay off the chart for a long time before damage occurred, as long as his head is still growing. I feel confident in her...I always pictured that a neurosurgeon would rush him into surgery since that is where they make their money. But she is not even leaning towards it! She is the only dr in the whole area that is doing the spina bifida surgeries on babies still in the womb. So, she is not hurting for business and is one of the best surgeons in the area. I am thrilled that she continues to see us instead of pushing us off on another dr - so she can get a more serious case in there. Anyway...

As far as his band is concerned....She walked in and said his head looked great! His hair is covering the flatness well - and she said that she can definitely tell that he is rounding out. She said that now the band is for cosmetic reasons - but that he can wear it up to 18 months if we want or we could stop now if we wanted, but she recommends that we keep going for a while longer, that we should see some more positive results!

So, overall it went well, but we are still not out of the woods. I will feel better when the next CT is done. Thank you all for the wonderful support! I always read all the posts, but don't get to respond or post very often due to an active child (I just couldn't wait until he was mobile ) and a husband who is jealous of the computer getting my attention instead of him! This is such a supportive group and I know that I couldn't have made it the past few months with out you!

Kimand , Raleigh, NC

-----Original Message-----From: Kendra [mailto:p-nutsmum@...]Sent: Thursday, March 15, 2001 3:34 PMPlagiocephaly Subject: Re: Please keep us in your prayers!

Kim:

How did your appt. go today?

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: QUAN, MICHELLE

'Plagiocephaly '

Sent: Thursday, March 15, 2001 9:51 AM

Subject: RE: Please keep us in your prayers!

Good luck Kim and ! We'll be thinking about you. & (9-20-00)-----Original Message-----From: justbryandkim@... [mailto:justbryandkim@...]Sent: Wednesday, March 14, 2001 11:49 AMPlagiocephaly Subject: Please keep us in your prayers!I strongly believe in the power of prayer, and would appreciate it if you would please keep in your prayers. Tomorrow we visit the neurosurgeon once again (every 2 months) to discuss possible surgery.'s metopic suture is closed as well as his soft spots. The neurosurgeon says that it is still possible for his head to grow (so we have been treating it as plagio), but if he drops off his head growth curve - then he needs surgery to open everything back up to allow growth so his brain will not get squished (not the correct technical term, of course). We visit the neuro every two months to get an accurate picture of his head growth - one month he may drop down, but the next he may catch back up. He has developed some new funky ridges over the past few weeks that have us very concerned. Also, we have not seen much progress with our helmet therapy probably due to these early closures. Please keep him in your prayers. I will update you tomorrow evening when we get home.Thanks, Kim and , Raleigh, NC

[Guest guest]

Kim,

Thank you for the update and we will breathe a sigh of relief for now. It sounds

like the appointment went well and it is soooo great that you trust and like

your neuro - that makes all the difference!!

Marci (Mom to )

Oklahoma