Fresh from surgery

Paige did awesome! She is absolutly amazing!! Her tubes were the first to be evaluated. THey did NOT replace her tubes. The right one was infected but the left is clear! YEAH! So drops for 10 more days and then she should be in the clear for a new hearing test.
Then came the lip, nose, and gum surgery! YES you read that right, Paige had her gums fused! We are super excited. There is absolutly not guarantee that she will have the gums stay fused and a tooth come through but it's a start and better than not trying! Her surgery lasted a total of 6 1/2 hours! It made for a very long day.

She really does look awesome. SHe is having a hard time eating after surgery but we are still working on it. SHe is really gassy and having a really hard time with lack of sleep.

So on to the thing you have been waiting for...PICTURES!! SHe is very swollen and her lip looks purple/blue because of the liquid bandage that is colored. She is NOT bruised.

Here you go...don't forget to comment..................

Tomorrow is the BIG day!

I thought I would leave you all a few pictures of my Beautiful PAIGE before her surgery tomorrow. She will look a LOT different after surgery. She is precious and perfect just the way she is!

ENT appt for Miss Paige

We just got back from Pittsburgh. Paige has hearing loss in her left ear, and that's why she got tubes back in October. Since then, the right ear has been draining nonstop and the left ear has done nothing. Therefore, she has NOT had her hearing retested. Well, we went today and success! I was even able to see the tube in her left ear, the one thing that we have not been able to do because it was so full of junk. Dr. Alper let me see, very cool! Plus, her right ear is infected (okay not so good news there). But, they are going to re-evaluate it on Friday when she is under for the surgery. They may replace her tubes that day if they think it will help. He thinks there might be something clogging the tube or something growing inside of it. Yuck! But, we should get more answers on Friday after surgery.

I also saw Dr. V in the hallway. I told her that Paige's cleft looked awesome and she called Dr. Grundwalt over to see it. They said that they think there is a very good chance of fusing it together. Dr. Grundwalt said "well we will get a better look when she's under on Friday." So you know what that means...they don't want to get our hopes up. Go figure. But, it was a good outlook anyways.

Well I will update more on Friday!

Christmas!!

I love Christmas! It's my favorite holiday. I LOVE buying for the kids and tend to go a little overboard! This of course was Paige's first XMAS, so it was extra special. Hope you enjoy! Don't forget the comments!

Thanks Great Grandma!

The kids Great Grandma sent them a package of candy and a cute little snowman for Paige for XMAS. I promised I would post the pictures!

Plus, the bib is from Alisha's boyfriend, Mark. I promised that I would take a picture of her in it! See, I told you she used it! :)

The one with the food on her face is Paige's first time with a spoon! She did awesome and without her NAM!

Paige's LAST NAM ADJUSTMENT!

Next week is the big day! Next Friday to be exact. It's bittersweet. While I don't want to have my sweet Paige go through surgery, I also thought this day would never come. They honestly say that parents have a hard time recognizing their babies after the surgery. I find that hard to believe but I guess we will see next week!

Today is one of those days that I know Prayer works! A few weeks ago, Dr. V stated that she did not think Paige would be able to have her gums fused at surgery. They just seemed too far apart. Dr. Grundwalt agreed and we were upset. But, we decided not to make a determination on postponing the surgery or going ahead with the intention of a bone graph in the future, until this week. So today, we went to our very last NAM adjustment. I told Dr. V that her cleft moved in the last 2 weeks. She said, "it sure did!" I asked her what she thought and she said, "with it that close, she could fuse it together. It's touching at the top BUT it's up to Dr. Grundwalt to decide if she thinks it will be okay!" I was so excited. That was NOT the response I thought we would get today. Not at all. So not only are we going ahead with the surgery BUT she might still have her gums fused. Now, this is completely up to Dr. Grundwalt to decide and we won't know for sure until the day of surgery but she still has a 1 week and 1/2 until surgery date. Her gums can still move a considerable amount in that time! So THANK YOU, THANK YOU, THANK YOU to EVERYONE who has been praying for Paige. Prayer works, God is good! Keep praying it moves more!

So I figured everyone would want to know as soon as we found out. :) I will be updating the blog with XMAS pics this week too. So don't forget to check that.

PLUS::::: On the day of surgery, I will be borrowing my sisters laptop. The hospital has wireless internet and I will be updating on Paige's surgery while we are there, WITH PICTURES! So be sure to check next friday in the evening for updates! I can hardly believe it's almost time!

Pre-op appt

We met with the cleft team for Paige's pre-operation appt. First we met with Regina, the nurse practiner. She is and always is very impressed with Paige's eating ability. She weighed in at 17 pounds even today. (3 more pounds and we are off to buy new carseats! LOL) Regina gave us more meds for Paige's ear as they are pretty sure that she is going to need to have her tube replaced during surgery. It has not opened up at all since she has had them put in, just too full of junk. Regina discussed Paige's over all growth and things look wonderful. She is healthy!

We then met with a nurse from the ENT clinic. She discussed a study that the clinic is doing on estacian tubes. They will do a full evaluation of Paige's ears for research. It's pretty cool because they will be able to see everything that is going on with her ears. They also pay us for doing it but we thought it would be beneficial for Paige since she is having hearing loss right now. I am going to start American Sign Language (ASL) with Paige so she can have that as suplemental language. It is often times fitting that I have a child with hearing loss. I took classes in college to learn sign language, my dad is deaf, I have friends who have profound hearing loss, and I can be often times (when I'm not out of practice) fluent in ASL. So it "should" come natural to me. To Hal, not so much. LOL

We then met with Dr. V. She did Paige's NAM adjustment and looked at her gumline. While Paige has made remarkable progress. Dr. V does not think that Paige's gumline will be ready for surgery!!! I'm extremely annoyed by this for many reasons. It's almost like they just give up on the NAM! Why do we do it for MONTHS if they are not going to see it through. Plus, I have recently talked with a mom of a baby girl who had an 18mm cleft and it was closed. Paige's was NO where near that. Dr. V and others have been quoted as saying "well most of the babies need a bone graph anyways!" Well, I don't care what other babies have to do, I don't want Paige to have one! (Take that back...Erica I don't want Lily to have one either! LOL) So we discussed postponing her surgery. While I hate to have that done, if it saves Paige from having a bone graph, I would move mountains! We are going to have that conversation again on December 30th at her last NAM adjustment. If her gums have moved since then, we are going to push for a postponement of surgery. IF they have not moved by then, then I doubt they will and we will go ahead with surgery. I'm torn either way! I want her to have her surgery but I also want to save her the PAIN of having a bone graph. People think "oh it's only a bone graph!" But think about it, would you want your 8 year old daughter have bone taken from her hip to put in her gums? I don't! PRAY, PRAY, PRAY!

We then met with Dr. Grundwalt, her plastic surgeon. She once again walked us through surgery and how they perform it. It's through a magnifying glasses and takes about 4-5 hours. It's very time consuming but NOT a major surgery with a lot of blood (as with most plastic surgery things). She will still be under the entire time. After surgery, she will be moved to the recovery ward and then to a recovery room on the 6th floor. She can have visitors later that night (I asked specifically for you Erica!) LOL The only thing we ask of anyone, is if you are planning to visit, please just call ahead of time. We are not sure how she will handle the surgery. She will have tylenol around the clock for a few days and morfin if she needs it. Dr. Grundwalt says that she is going to wait on Dr. V's decision of the gumline but does not see it capable at this point as her gums are still not touching.

We met with Matt briefly today and he gave us some new bottles to try. The pigeon bottles are pretty cool. The best part, SHE CAN USE A REGULAR CUTE BOTTLE! She has to use her tongue to make the formula come out with the special nipple. Pretty cool. I tried it and she was too hungry to care. So we will try again later.

After surgery, NO spoons, fingers, pacifers (can't use one anyways), or anything besides a bottle in the mouth for 2 weeks. She will have the NO NO bands (restraints on her arms) for 2 weeks also! That will suck but it is called "tough love!"

So all in all, we still do not know if surgery is going to happen. My feelings are that it probably will. I get the impression that they are done with the NAM with Paige because everything on the outside looks so amazing! I just think about her future and would like to spare her the agony of having a bone graph. At least she has a good friend who will go through it along with her. I say we schedule them on the same day! :)