Friday, September 11, 2009

The joys of a cleft baby...

As I have been reading a ton of CLP and all that goes with it, I find myself reading blogs of other children affected. One of the things that I have read a great deal about so far is the reaction from others towards a CLP baby. I assumed that we would have our chance at these reactions either negative or positive along the way. It only took a few weeks to really start having people ask what's going on with Paige but so it begins...

1. At the fair when Paige was a week old, one of the carny ladies asked if she was a premie. I said "oh heck no, she's huge!" The lady proceeded to say "Oh well I saw the tape on her face and assumed she was a premie" I continued to explain that she has CLP. The lady goes "Oh I only wondered because when my son had his children, they didn't have such a thing." OMG she was serious. The way she stated it, it was as though we chose to have this stupid tape on her face for the heck of it.

2. The best comment thus far that I have heard is..."Oh when she has her surgery, she will be just beautiful." Hhahahaha I have to almost laugh at this because while I know people are trying to reassure us that the surgery will go okay, I almost want to say "she's beautiful right NOW!" Oh wait, I have actually said that to a few people. LOL

3. Went to Walmart today. This very nice, kind older woman came up and asked if she was "allowed to look at the baby." I politely said sure. I didn't feel I needed to explain her lip or tape as I am sure people will just ask. She said "oh dear, she has a Cleft lip doesn't she?" I said, yes. She proceeded to tell me about this 30 year old friend of hers that had to go to Pittsburgh a lot as a kid but now she's just a beautiful woman that you can not even tell. It was kind of her but it's amazing how people just always know someone else who has it and then there's that comment again, "beautiful after surgery!" Oh and then the woman said "it's just amazing how they feed these kids!" That kinda bothered me. She eats no different than any other baby would appear to eat. You wouldn't even know that she's actually not sucking it unless you are the one feeding her. Silly woman...she actually said "these kids" My poor daughter has now been put into a seperate category from "other kids!"

4. This other woman literally followed me around Walmart giving me the funnest looks as I carried Paige trying to feed her. I almost asked if she wanted an educated lesson.

So far I haven't gotten any really rude remarks. Most people who actually know us say how she is beautiful and everything. I usually tell them right away "she has that in her mouth because she has CLP." Caring people say "That's okay, she's beautiful!" One of the blogs I have read said that a young child asked him mom what was wrong with baby with a CLP. The mother replied "that mother did drugs and that's why the baby looks like that." (yes seriously, can you believe?!!) I'm waiting for something like that some day. Thus far, curiousity has been more of what I have encountered.

More for Poor Paige!

I swear this little girl got hit with the unlucky stick! Paige had her audiology appt today. At birth, she failed her hearing exam. This is very common with CLP patients as they generally have middle ear issues. 99.9% (according to Matt) say that they do NOT Have hearing loss. Well, Paige is not hearing many sounds in her left ear. Her right ear is fine. Her left ear, not so much. They said she is hearing a really high pitch and a really low pitch but not much else in between. It's all in her one ear. The outcome for this

1. We have to meet with an ENT in Pittsburgh (EAR,NOSE,THROAT doctor) to continue treatment.
2. She will more than likely get tubes in her ears when she has her lip surgery.
3. She may have hearing loss in that ear until the palate is fixed but HOPEFULLY not after that. We are praying it's nothing more than just from the palate.

The plan right now is to meet with the ENT at our next team appt. When we meet with that doctor, they will test her again and will be able to tell me what kind of loss we are talking about. The machine in Meadville was not able to do that so we will get tested again down there.

I was really hoping it was going to pass but knew in my heart it probably wasn't going to. So pray it's just from the palate and nothing more.

Wednesday, September 9, 2009

Paige's 3rd Cleft Team Appt

We took Paige to see her Ortho and Ped at Children's today. The Ortho (Dr. V) was very impressed with how her lip is so close together. She remarked on that the minute we went in. YEAH!! She said the NAM is doing great and we should really start to see a big difference in the next couple of weeks. So that's great news. The even better news has to do with weight gain. Many children with CLP do not gain much weight. It's much harder for them to eat because they have NO suction and basically gum the milk outta the bottle. Plus, many have reflux and they spit up a bunch. Paige has a touch of reflux but it's only when she drinks formula (which Mommy is trying her best NOT to give her very often). Plus the fact that the bigger they are, the better outcome for surgery. They have to be 10 pounds to have the surgery. I am pleased to announce that my little pork chop weighs 9 pounds and 11 ounces!! Go PAIGE! She really doesn't eat any different from any other baby at about every 3-4 hours but she does eat at least 3-4 ounces each feeding! She does really great! We were all impressed. Daddy and I were hoping for a 9 pound and 5 ounce baby so this is even better!

Here's a few pictures for your enjoyment. Don't forget to comment!