Tongue and Lip Tie FAQ - Page 3 - Mothering Forums

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#61 of 151 Old 04-17-2008, 01:08 PM
 
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It sounds like posterior tongue tie does not HAVE to be a surgery with anesthesia, yes?
Dd1's was definitely posterior and definitely a simple clip after anesthetic cream. Feel free to pm me, if nothing else for a shoulder to cry on. If I were you I'd start contacting the people who know about tongue tie--Dr. Coryllos, Brian Palmer, Cathy Genna, Barbara Latterner, etc. and ask them who they know who'd good at TT clipping for posterior. They tend to be passionate about it, very kind and very helpful. Dr. C, for instance, charges something like $75 for the procedure and spend over an hour with you, and this is someone who used to be chief of surgery at her hospital, so she's definitely not doing it to make big bucks. You REALLY want someone experienced and IMO, preferably a trained surgeon (i.e., not a pediatrician or an ENT). I know two people who had it done by an ENT and had to have it re-clipped because the ENT didn't do enough.

Also if there's a good reference from this thread (I haven't gone back to look) then try calling that one and consider traveling the 3.5 hours (gosh, sounds awful with a tiny one but maybe worth it).
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#62 of 151 Old 04-17-2008, 09:55 PM
 
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I live about 3.5 hours from Dr. Punger, who has been recommended by an MDC member and has a special interest in releasing tongue ties. I am so excited that we may have an answer!! It is especially poignant because I had the same problems with DD #1. She does not seem extremely tongue-tied to me now at age 4, but is obviously lip-tied like her brother, and I wonder if she has tongue-tie and it has stretched. I BF her for 6 months at breast through terrible pain and then EPed for 9 months.

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#63 of 151 Old 04-19-2008, 09:42 PM
 
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Good info. DH had a tongue-tie and it cause speech problems throughout his childhood. His pediatrician clipped it when he was 8 years old or so, he remembers it as being very painful. When DS was born with tongue-tie (I think it was very tied-down, his tongue wouldn't extend enough to make a good latch possible) and then we had so many nursing problems he thought it would be a good idea to get it clipped as soon as possible. We did it when DS was a couple weeks old and I think it did help with nursing. I didn't have as many resources as I do now, but Dr. Sears was very strongly for clipping it. It was actually very simple, they clip it with what looks like little fingernail scissors, there was maybe a drop of blood (I couldn't watch, but DH held DS for the pediatrician) and I nursed him right afterwards and really DS didn't seem too upset about it, less than with his heel-sticks for bili testing. If it has helped with nursing I am so glad we did it though because we've been nursing for nearly 2 years now and it has been so important to us.

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#64 of 151 Old 04-20-2008, 12:33 AM
 
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Just thought I'd mention that I talked to my mom today and told her about DS, she immediately said, "Oh, I was born tongue-tied too! They saw it right away and clipped it." My father's brother also was born TT and had it clipped. Both my parents were actually astounded that this is not checked for routinely any more and that most peds won't do the clip. Darn you, bottles and formula...

By the way, I now also realize that I am mildly tongue-tied too! I had no idea, but DH was laughing at me and how pathetically short my tongue is when I stick it out! But I was BF with no problems. I guess it must vary.

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#65 of 151 Old 04-20-2008, 12:49 AM
 
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Just thought I'd mention that I talked to my mom today and told her about DS, she immediately said, "Oh, I was born tongue-tied too! They saw it right away and clipped it." My father's brother also was born TT and had it clipped. Both my parents were actually astounded that this is not checked for routinely any more and that most peds won't do the clip. Darn you, bottles and formula...

By the way, I now also realize that I am mildly tongue-tied too! I had no idea, but DH was laughing at me and how pathetically short my tongue is when I stick it out! But I was BF with no problems. I guess it must vary.
It really does! DH and I clipped mine the other night (after seeing DS's done) and while I don't have a normal extension I have already seen/felt a difference in my day to day life. I have yet to get an ounce of heartburn from the things that used to trigger it like mad! It really didnt hurt all that much. No more so than biting your tongue.

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#66 of 151 Old 04-20-2008, 01:07 AM
 
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It really does! DH and I clipped mine the other night (after seeing DS's done) and while I don't have a normal extension I have already seen/felt a difference in my day to day life. I have yet to get an ounce of heartburn from the things that used to trigger it like mad! It really didnt hurt all that much. No more so than biting your tongue.
hey sarah can you tell me more baout this connection between tongue tie and heartburn?

one of my boys with tt (2 of them have what looks like type 1 and I successfully bf them both well past that first birthday!) suffered from severe GERD. he's 4 and still barfing. I've never heard that there could be a connection between the two things before.

eta: neither of my boys have speech problems. they are nearly 7 and 4yrs.

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#67 of 151 Old 04-20-2008, 06:06 AM
 
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hey sarah can you tell me more baout this connection between tongue tie and heartburn?

one of my boys with tt (2 of them have what looks like type 1 and I successfully bf them both well past that first birthday!) suffered from severe GERD. he's 4 and still barfing. I've never heard that there could be a connection between the two things before.

eta: neither of my boys have speech problems. they are nearly 7 and 4yrs.
If you look at the Brian Palmer study he talks about one of his patients having severe gastrointestinal issues that had her on a plethora of medications and a few months after having her tongue fixed she was completely off all the medications!

http://www.brianpalmerdds.com/pdf/frenum_pdf.pdf

If you put in the number 66 it will take you straight to that slide. It really does make sense!

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#68 of 151 Old 04-20-2008, 01:44 PM
 
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I uploaded some pics of DS's tongue. I would love it if anyone with experience with posterior ties would look at them and see what they think. I am pretty sure he really has this, but before I go in with guns blazing I want to be 100% sure.

Heart-shaped tip:

http://i4.photobucket.com/albums/y10...c/325025-1.jpg
http://i4.photobucket.com/albums/y10...c/325026-1.jpg
http://i4.photobucket.com/albums/y10...c/325013-2.jpg

This seems to be as much as he can extend it:
http://i4.photobucket.com/albums/y10...c/325019-2.jpg
http://i4.photobucket.com/albums/y10...nec/325018.jpg

Not going to roof of mouth when he cries:
http://i4.photobucket.com/albums/y10...nec/325027.jpg

ETA a few more:

See, it's not the classic one where it's at the tip of the tongue. This confuses me a bit--it's still tied, right?

http://i4.photobucket.com/albums/y10...c/325034-1.jpg
http://i4.photobucket.com/albums/y10...nec/325040.jpg

Also, does anyone have contact info for Elizabeth Coryllos and Catherine Watson Genna?

grateful mother to DD, 1/04, and DS, 2/08

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#69 of 151 Old 04-20-2008, 01:55 PM
 
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Dr. Elizabeth Coryllos 516 671-6816 (Long Island)
Cathy Genna 718-846-2323 (Queens)

dd #1 11/15/07 and dd #2 unplanned and so glad the midwife was on her way!
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#70 of 151 Old 04-20-2008, 03:20 PM
 
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Thank you!! What about their email addresses--anyone have that?

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#71 of 151 Old 04-21-2008, 11:25 AM - Thread Starter
 
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Here's Catherine Watson Genna's email,
cwgenna@lactspeak.com

and from another site:
EMAIL: cwgenna@covad.net
PHONE: 718 846-2323

and some contact info on Dr. Coryllos, don't know how current:

Elizabeth Coryllos MD,MS,FAAP,IBCLC
8 Jaegger Drive
Glen Head NY 11545
United States
Phone: 516-759-4411
Fax: 516-759-4441
Email: pflardi@optonline.net
http://www.breastfeeding.com/directo...s/newyork.html


Here's more pics of different tongue tie types from an ILCA conference presentation by Genna & Coryllos:

http://www.ilca.org/conference/07/01..._genna_ppt.pdf

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#72 of 151 Old 04-21-2008, 11:58 AM - Thread Starter
 
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If someone has a professional interest in this field check out some conferences in 2008 in California:

http://www.californiabreastfeeding.o...ferences2.html

For instance, "Tongue-Tie: From Confusion to Clarity James Murphy, MD, FAAP and Catherine Watson Genna, BS, IBCLC"
http://www.californiabreastfeeding.o...April_2008.pdf

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#73 of 151 Old 04-22-2008, 01:35 PM
 
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Update: we saw a GREAT pediatric OT/infant feeding specialist today who confirmed that DS definitely has a type 3/4 (posterior) tongue tie. His suck is all messed up and he's compensating for his poor tongue action by mangling my poor nipples. She showed us some exercises we can do, but was in agreement that a physical fix is the way to go, saying it's bad enough that he will probably even have trouble eating solids. I now have the name and number of pediatric ENT in town who is interested in seeing him and potentially performing the release.

YAY!! And thank you MDC. I have to point out that two midwives, his ped and the LC (intially) ALL missed this, even though I specifically asked the ped to check his tongue. It's sort of shocking.

grateful mother to DD, 1/04, and DS, 2/08

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#74 of 151 Old 04-24-2008, 10:39 AM
 
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I'm posting the name of the great pediatric occupational therapist who diagnosed DS's posterior tongue tie, recommended the tongue release, and referred us:

Elayne McNamara
Shands-UF Hospital
Gainesville, FL

She works in the NICU, however, and I'm not sure how often she sees full-term babies. My LC got us in to her.

I hope to able to post the name of a ped ENT who does the clips next...but we have yet to see him.

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#75 of 151 Old 04-25-2008, 06:15 PM
 
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Update: we saw a GREAT pediatric OT/infant feeding specialist today who confirmed that DS definitely has a type 3/4 (posterior) tongue tie. His suck is all messed up and he's compensating for his poor tongue action by mangling my poor nipples. She showed us some exercises we can do, but was in agreement that a physical fix is the way to go, saying it's bad enough that he will probably even have trouble eating solids. I now have the name and number of pediatric ENT in town who is interested in seeing him and potentially performing the release.

YAY!! And thank you MDC. I have to point out that two midwives, his ped and the LC (intially) ALL missed this, even though I specifically asked the ped to check his tongue. It's sort of shocking.

Hi. We were in the same situation, except we are in England which is even worse for diagnosing posterior tongue ties. My son had a very severe posterior tongue tie, it has been snipped TWICE by the most experienced surgeon in England, however it is still tied ( he does not even elevate it when he cries and he cannot even suck on a bottle ) So we are flying to NY on Monday to see Dr. Coryllos!!!

Incase anyone's wondering about whether to snip or not, here's some info I've researched through lots of chats with CWG and others....

Babies are formed with the tongue bonded to the floor of the mouth and it should gradually recede about 8 weeks gestation I believe. Anything left over is a remnant and that can cause the problems, so the frenula that's being snipped is something that shouldn't be there anyway. Its true that some babies manage fine, but many babies have to compensate by using excessive jaw movement or lip movement. Also it can cause speech problems, palate and dental problems. My baby is getting milk in his airways ( makes a growly wet sound after feeding ) because the back of the tongue can't elevate to seal off the soft palate , this can lead to aspiration, ear infections and all sorts of problems (good job he's still getting my milk )

Don't know if that helps anyone, its just I know how frustrating it can be when people try to paint you as a cruel mother jut because you are trying to get the best for your baby.

Hope your sons feeding improved after the snip. If in any doubt get it checked out asap ( I left mine for weeks thinking he would improve, because noone thought it possible that he could still be tied, now not sure if he'll ever get back to breast feeding )
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#76 of 151 Old 04-28-2008, 07:22 PM
 
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Wow, berensmum, good luck to you. I hope you get a chance to update.

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#77 of 151 Old 04-29-2008, 04:51 PM
 
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I've been meaning to mention something: the OT gave us a Gerber Natural Flex pacifier to use with DS for sucking exercises. I actually bought one of these for him when he was born and noticed that he could not suck it AT ALL. He still really can't, though we are trying to teach him to (he uses a Mam paci which he can "gum"). Anyway, this could be a little test for people who are wondering about TT, I think: if your baby cannot keep hold of these pacis (just rolls them back and forth and spits them out) his/her suck is probably not good. They require a good tongue cupping action to stay in.

You can see them here:
http://www.gerber.com/prodcat?catid=579

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#78 of 151 Old 05-05-2008, 11:59 AM
 
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Uuuggh.

Saw the ENT this morning and he will do the clip, but wants to do it under general anesthesia. He also wants to put in dissolvable stitches. He says this will lessen the risk of scarring that could reattach the tongue. The OT mentioned this as well...but I really hate the idea of putting my TINY 3mo (he's still well under 11 pounds) under GA, even for 5 minutes. I scheduled the surgery anyway, but I do not feel good about it and may cancel. I called my general ped and she is going to talk to the MD she knows in town who does in-office clips and get some second opinions.

I just...oh man. What if something happened because I had him have surgery with GA for this minor-ish thing? It's not like he needs heart surgery here. I could pump, I could FF, I could supplement...

The other thing is that I wasn't terribly impressed with the ENT's knowledge of TT. He described DS's as "mild," which is pretty much the opposite of what the OT said....

So confused.

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#79 of 151 Old 05-05-2008, 12:11 PM
 
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Uuuggh.

Saw the ENT this morning and he will do the clip, but wants to do it under general anesthesia. He also wants to put in dissolvable stitches. He says this will lessen the risk of scarring that could reattach the tongue. The OT mentioned this as well...but I really hate the idea of putting my TINY 3mo (he's still well under 11 pounds) under GA, even for 5 minutes. I scheduled the surgery anyway, but I do not feel good about it and may cancel. I called my general ped and she is going to talk to the MD she knows in town who does in-office clips and get some second opinions.

I just...oh man. What if something happened because I had him have surgery with GA for this minor-ish thing? It's not like he needs heart surgery here. I could pump, I could FF, I could supplement...

The other thing is that I wasn't terribly impressed with the ENT's knowledge of TT. He described DS's as "mild," which is pretty much the opposite of what the OT said....

So confused.
IMO, if you can swing the finances better to travel far to one of the experts than to get an ENT to do it with stitches and general. The tongue is on constant motion and does not easily re-attach. I think you need someone else. Sorry--I well remember how stressful this was for us!
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#80 of 151 Old 05-05-2008, 12:18 PM
 
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The other thing is that I wasn't terribly impressed with the ENT's knowledge of TT. He described DS's as "mild," which is pretty much the opposite of what the OT said....
IMO, you REALLY want someone who knows what they're doing performing this. I have two friends who used ENTs who did the clip not enough and they had to have it re-clipped. How Dr. Coryllos does it is a straight clip then you get the baby back to breastfeed almost immediately since the nursing suction stops the bleeding. I don't mean to overstep here but if I were you I don't think I'd use the ENT you mentioned. Does he say how many he has performed on tiny babies? How soon you'd get the baby back? (Often they don't call you in right as the baby wakes up, depends what the nurse on duty feels like doing)
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#81 of 151 Old 05-05-2008, 02:17 PM
 
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and some contact info on Dr. Coryllos, don't know how current:

Elizabeth Coryllos MD,MS,FAAP,IBCLC
8 Jaegger Drive
Glen Head NY 11545
United States
Phone: 516-759-4411
Fax: 516-759-4441
Email: pflardi@optonline.net
http://www.breastfeeding.com/directo...s/newyork.html
When I saw her less than 9 months ago, she was in Minneola at 516-671-6816.

Leigh, mama to Rostislav homeborn Aug 9 2007, and Oksana homeborn Feb 24 2011.
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#82 of 151 Old 05-05-2008, 03:34 PM
 
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Oh, gosh, guys. I am confused.

I ended up calling Dr. Punger (recommended in this thread) and making an appointment with her tomorrow to get it clipped in her office with no GA. So I now have to cancel one of these appointments. The nurse said Dr. P does 2-4 of these procedures a week, which sounds great. But the nurse also didn't really seem familiar with the idea of "posterior" tongue-tie, which is what we've been told DS has.

But...my mama instincts say not to go with the guy we saw today. The only thing bothering me is the issue of the potential scarring and/or an incomplete release, both of which he claimed were risks of an in-office clip.

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#83 of 151 Old 05-05-2008, 07:21 PM
 
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http://twofloridadocs.com/tongue_tied.php

Here is a link to Dr. Punger's article on tongue tie, it describes how she does the procedure. It sounds like if something is too complicated she may refer it out to an ENT.

Dr. Punger did my DD's frenotomy and she was really great. I would recommend her to anyone having troubles with breastfeeding.
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#84 of 151 Old 05-05-2008, 07:47 PM
 
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Oh, gosh, guys. I am confused.

I ended up calling Dr. Punger (recommended in this thread) and making an appointment with her tomorrow to get it clipped in her office with no GA. So I now have to cancel one of these appointments. The nurse said Dr. P does 2-4 of these procedures a week, which sounds great. But the nurse also didn't really seem familiar with the idea of "posterior" tongue-tie, which is what we've been told DS has.

But...my mama instincts say not to go with the guy we saw today. The only thing bothering me is the issue of the potential scarring and/or an incomplete release, both of which he claimed were risks of an in-office clip.
She's completely awesome! No worries she'll take good care of your DC. Also after she clips and baby has nursed without problems you can ask for them to put a little of the numbing stuff on it. She did it for mine DS2, but only after he nursed Too bad you arent going on Wednesday cause we'll be there getting DS1's clipped

-:¦:-♥Sarah Lynne♥-:¦:-Wife to Michael and Mommy to Austin(5), Steven(3), Tristyn(1), and Laurelyn (6/3/2011)

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#85 of 151 Old 05-06-2008, 11:48 AM
 
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Dr Coryllos told us that most people are only comfortable clipping type 1 or 2. She said often in cases of 3 or 4, people will go somewhere else first, and then find it wasn't clipped enough, and come to her.

Leigh, mama to Rostislav homeborn Aug 9 2007, and Oksana homeborn Feb 24 2011.
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#86 of 151 Old 05-06-2008, 10:16 PM
 
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Really quick:

DS was clipped today. Procedure went absolutely fine--so easy--he didn't even really cry. I can feel *some* difference but it is not dramatic yet. However, I think he needs to really retrain his suck. I was able to get him to suck my pinky some AND he could "latch" to the Gerber natural latch paci, which is a big change, so I feel hopeful.

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#87 of 151 Old 05-06-2008, 10:26 PM
 
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Don't give up hope, I remember that DD had to get used to it too, and that it took a while for her to learn (tongue tie was clipped at one month, everything was better by 9 weeks) to stick that tongue out over her gums. Keep working with it, use your finger of the paci to massage that tongue out before he latches on.
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#88 of 151 Old 05-08-2008, 11:51 AM
 
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Wow! I suspect possible tongue tie with my LO, and this is a great resource thread- thanks!

I do have a question- two of my baby's uncles had tongue tie (one was undiagnosed until it caused speech delays!) and I wondered how many others have seen this family link? I know it can be genetic...does this mean all my kids are likely to have tongue tie?

Christian wife, busy happy mama to 4yo DS, 3yo DD, 15mo DS, and #4, expected next spring!

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#89 of 151 Old 05-09-2008, 01:06 AM
 
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Originally Posted by Gnatty View Post
Wow! I suspect possible tongue tie with my LO, and this is a great resource thread- thanks!

I do have a question- two of my baby's uncles had tongue tie (one was undiagnosed until it caused speech delays!) and I wondered how many others have seen this family link? I know it can be genetic...does this mean all my kids are likely to have tongue tie?
I'm tongue tied. Both of my DSs were (DS1 got clipped yesterday.) Its a very dominate trait in our family (only from my side that we know of.) I do believe it is genetic in nature.

-:¦:-♥Sarah Lynne♥-:¦:-Wife to Michael and Mommy to Austin(5), Steven(3), Tristyn(1), and Laurelyn (6/3/2011)

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#90 of 151 Old 05-09-2008, 05:17 PM
 
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Update--he's getting better! He is doing much more of a pulling, milking suck rather than a chompy one. We're not all the way there for sure, but I am feeling a difference for sure. I think maybe he's got better mouth action but his tngue is still not extending fully/always?

grateful mother to DD, 1/04, and DS, 2/08

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