Cleft info.

[Deleted]

I know some of you have asked me questions about the things that he goes through.

The surgery that he had back in April to repair his palate is supposed to fix his suction and speech issues, but it's just not that simple. The muscle that goes across the back of a normal mouth is a single muscle but for him it's 2 muscles. So one of the things that has to be fixed is making those 2 muscles into 1. It can take anywhere from 2-12 months, most 5-6 month, post palate repair to gain normal function of that muscle.

We are 3 months post op and while he can make some sounds and movements that need suction he hasn't figured out how to use a bottle that way yet. When you get used to eating out of a bottle that someone else has been squeezing into your mouth, like a squirt gun for 12 months, it's hard to have to relearn how to drink out of something different.

We start speech therapy in 3 or 4 months. There are sounds that he can't make yet, like the "D" sound, because of the muscle issue. He will be a patient at SCH until he is 18 for one thing or another. They will start orthodontics at about the age of 6 to get the teeth prepared for the surgery he will need at around 7-9 years of age. He will most likely have to wear an expander, a couple sets of braces and may even need a palatal expansion surgery if the expander doesn't work.

There is the possibility that he will need 5-6 more surgeries, not including the bone graft one between 7-9. Nothing is certain now and until we know more about how everything is healing we won't have any answers onto if and when those other surgeries will be necessary.

If you have any questions for me feel free to ask. I'm not shy with answers.

ETA: I will try not to spam the board with too much of this ever.

[tacocat]

Thank you for the info. I think you should spam the board as much as you need. It must be hard watching your child go thru this!

[Deleted]

It's been extremely hard on both of us. It has put some strain on our marriage. It has also caused lots of tension between us and some family members.

In the last year and a half, since we found out about the cleft at our anatomy scan, I have beaten myself up for taking a medication that is now part of a class action lawsuits for birth defects, we don't think that is the cause since H has 2 cousins that were also born with clefts so for us it is most likely genetic.

I beat myself up for not being able to produce any breast milk after 2 weeks because I stopped eating after a nurse told me I was feeding my child wrong and therefore causing him to be jaundiced and starving. I had such high hopes of breast feeding and not being able to do it about killed me. My H and I both agreed though it was best I stopped and also took care of myself.

I've battled with PPD since around 3 months after his birth. I've lost a couple friends due I other circumstances that just fed the PPD fire.

I dread the day that I have to tell him that he has to have yet another surgery since he won't remember the first 2.

We are finally getting past some of the issues that this has caused between us and are finally moving on to a period of actually enjoying his childhood and not constantly dreading doctors appointments or what procedure will be up next.

[tacocat]

I can't even imagine how hard it is for you but he will be stronger because of it. As long as he knows that you love and support him he will be ok. Make sure you have the support you need though. I am sorry you have lost friends over this I am here if you ever want to vent!

[jennlin]

I know it'll vary, based on insurance and all that- but how much does something like this cost out-of-pocket?

Try not to beat yourself up on it, it wasn't anything you had done..you'll get through this and you'll all be super strong when he is older.

[georgeharrison]

Thanks for the education on this SC. I really didn't have any idea what all you guys have been going through with this. I hope you will rely on the girls on this board for support.

[jennlin]

And as for the spam--post about it whenever you feel the need, you really don't need to hold back. Like I've mentioned before, "just don't be stupid" are really the rules--like don't post a link to donate to the cause every single day, but if something comes up, definitely post it. I don't want people to feel like they can't post what's on their mind.

[picksthemusic]

Wow. Thank you for sharing that information - it's definitely sobering. But again, thanks for sharing - I can't imagine the emotional struggle you and your DH have gone through for your sweet boy. It was bad enough with M being in the NICU for a week and having MRIs of her brain and developmental testing to make sure she's normal and healthy.... I can't even imagine the lifetime of struggle.

*hugs*

[joenali]

Thanks for sharing. That's got to be rough for you guys. Will Edmund have any other developmental delays aside from speech?

[mkate710]

Thank you for sharing all of this! I'm so sorry you and your H have had to deal with all of stress and emotional impact of it. You are an incredible mom and Edmund will grow up knowing you worked hard, made sacrifices and did everything you could to ensure he had the best possible care. He is SUCH a cute little guy, I always enjoy your photos and posts about him. Hang in there, and vent here any time you need!

[Deleted]

Jennlin, I honestly have no idea how much it costs out of pocket since we were fortunate enough to qualify for financial aid through their uncompensated care fund. From our EOBs each surgery and hospital stay, we've done 2, have costed somewhere between $60k and $70k before insurance. Since we are double covered that helps and then the UCF takes care of the rest. I haven't seen a bill from them.

[Deleted]

It's not really a spam issue I have just been told on an occasion on another board that I talk about it too much. It always makes me wonder if I still am.

[mkate710]

Jul 25, 2012 10:25:49 GMT -5 @sounderschick said:

It's not really a spam issue I have just been told on an occasion on another board that I talk about it too much. It always makes me wonder if I still am.

Seattle nexties > other boards. We love you and Edmund. Talk all you need.

[mkate710]

Jul 25, 2012 10:43:38 GMT -5 @lauralynne said:

Jul 25, 2012 10:25:49 GMT -5 @sounderschick said:

It's not really a spam issue I have just been told on an occasion on another board that I talk about it too much. It always makes me wonder if I still am.

This is a major part of your life. As (cyber) friends, it's our honor to share it with you. We all talk about our lives - to make this off limits or ask you to limit it is just cruel in my opinion.

Ditto, ditto, ditto. Well said Lauralynne!

[jennlin]

Jul 25, 2012 10:43:38 GMT -5 @lauralynne said:

Jul 25, 2012 10:25:49 GMT -5 @sounderschick said:

It's not really a spam issue I have just been told on an occasion on another board that I talk about it too much. It always makes me wonder if I still am.

This is a major part of your life. As (cyber) friends, it's our honor to share it with you. We all talk about our lives - to make this off limits or ask you to limit it is just cruel in my opinion.

This! I hate when other boards complain/restrict what you post about (unless for obvious reasons). If you don't like it, skip over it!

[macpanda]

Thank you for posting this info and I am grateful for the education on the topic. I had no idea that it involved that many surgeries over that long of a timespan. I feel for what you and DH are going through. This must be so tough. Ditto PPs, please don't hold back on sharing here. You need all the support you can get.

[picksthemusic]

Jul 25, 2012 10:45:01 GMT -5 mkate710 said:

Jul 25, 2012 10:43:38 GMT -5 @lauralynne said:

This is a major part of your life. As (cyber) friends, it's our honor to share it with you. We all talk about our lives - to make this off limits or ask you to limit it is just cruel in my opinion.

Ditto, ditto, ditto. Well said Lauralynne!

AGREED.

[Deleted]

Jul 25, 2012 11:12:33 GMT -5 picksthemusic said:

Jul 25, 2012 10:45:01 GMT -5 mkate710 said:

Ditto, ditto, ditto. Well said Lauralynne!

AGREED.

+12 from me!!

This is something that must be so INCREDIBLY hard and stressful. I'm always appreciative of the information you share and occasional updates about the whole process like this really help to understand the processes involved.

[llh0211]

Thanks for sharing! As others have said, this must be very difficult to go through. I'm glad that you're finally at a place where you can enjoy his childhood, without worrying about any upcoming surgeries. At least for a few years!

[Deleted]

Thank you for the support! It really means a lot.