Embarking on a New Journey

It is sad really...

2011-03-24T18:39:00.002-04:00

Paige is having surgery next Friday. Within the last month, she got a really bad middle ear infection and it blew out her tube in the right side. So she is seeing a new ENT to have it replaced. It's truthfully sad that I'm not at all worried about this. When the woman at the front desk asked me if I understood the procedure, I told her that this was #4 surgery for Paige. She gasped and just looked at me. This is NOTHING compared to lip and palate surgery. Those were 6+ hours of surgery, hospital stays, ect. Tubes is nothing. 10 minute procedure and go home in the same day. The best part is, we are having it right here in neighboring town instead of driving to Pittsburgh. I would rather the expertise of ENT in Pittsburgh but I really hate that we drive there to see a regular ENT most of the time who has no more cleft experience than ENT in our town. I would rather drive 19 miles than 215 miles! But of course, everything is always what's best for Paige and I believe this is. :)

All in all though..she's doing fabulous! I couldn't complain. Normal, beautiful, happy little girl! Day in and day out!

Same old...

2011-01-20T15:59:00.002-05:00

Not a whole lot is going on with us!

We are having a joyful winter. The kids are enjoying not having to go outside for hours a time and spending more family time indoors. Still go sled riding and play out when we can, just not as often.

Madison is really enjoying Ballet class. Her first ever recital is May 14th and 15th at 1pm. If interested, contact me and I'll give you more details. We are probably having her birthday party following the recital. She is also LOVING preschool. She's one smart cookie and is extremely social. She adores her teachers and can't get enough of them. She hasn't missed a day yet and I think she would kill me if she did. She LOVES it!

Owen is having tons of fun in 1st grade. They just had a sock hop at school today. So cute seeing all these kids in poodle skirts and t shirts. :) So fun. He will be 7 in about 10 days. I can hardly believe it! He is growing up way too fast.

Paige is doing fabulous! She is talking lots and has a really sweet and fun personality. She signs about 5 words and babbles lots of things! She has about 30 words in her vocabulary. She is still attending speech once a month to monitor her progress. Thus, far she's doing great. She's a little pistol.

Oh and our new addition to the family....Chloe. :) Chloe is a dog! She is a cute 3 month old Boston Terrier that we surprised the kids with for Christmas! They love her and she's sooo good with my rough housing kiddos. If she would stop pooping on the floor, she would be perfect!

All in all...living life and enjoying it

Pics!

2010-12-21T22:13:00.003-05:00

I actually have my camera ready to load some pics! So here goes a few updated beautiful pics of my kiddos!

Taking time

2010-11-22T22:36:00.002-05:00

People have always asked Hal and I, "how do you do it?" "How do you juggle school, kids, work and life?" The answer is "we just do it!" Since Hal and I have been married (7 years in December), we have between the two of us...completed undergrad school, completed graduate program, completed associates program, worked full time jobs, been a soccer parent, coached t- ball (2 years), gave birth to 3 beautiful, amazing children, and so much more. PTO, work, new found pageants, ballet, doctors appointments, etc. I look at our lives so incredibly ordinary. I think about all the accomplishments we have made and I know that we will make more in life. We have only just begun. I don't think that we are any better than any other family. We set out a goal in life and we did it. We never sacrificed our role as a parent, as many people had told us we would have to do to succeed in what we did/do. That is our number one focus. Yet, sometimes while I'm thinking about humble I really should be...I take one second and think to myself... "can't we be proud?" Seriously, are we not allowed to yell to the world that we put our children first, that we finished college, that we have good paying jobs, that we are succeeding in life? Do we have to be humble all the time?

I know this is simply rambling. I understand that it must sound like crazy talk. Sometimes I just wonder if we are allowed to simply be happy. It seems that there are so much negativity in our lives with unhappy people who want to always bring us down. Bring us down because we are not exactly what they thought/think a family should be like. Bring us down because they think they can do better.

I was recently told that it takes a community of people to raise children. Why can't we be proud that it doesn't take a community with us? Can't we be proud that when we reach Heaven's gate that we can look God straight in the eyes and tell Him that we did the best we could and protected our children from the wrong of this world?. For so many reasons I dislike this statement. A community is not held responsible for the shortcomings of parents. The parents are held responsible for the lack of upbringing of a child. No one will say, "that community failed that child." They will say "they had rotten parents." Plain and simple. What about cultures and teaching differences in family to our children? Can a parent truly teach that on their own? I believe so. Do you know that the families that I work with the most that have difficulties are those families that there are too many roasters in the hen house. Children get confused easily in life. Distorted views of life are easily instilled in children. My children are exposed to probably more than Hal and I combined as a child. We were both brought up in a family that did not communicate with other families as often as most. However, we are two of the most social people I know. I want my children to know that the people we surround ourselves with are those who respect our values, our morals and will give my children something positive to learn.

I have three of the most social, sweet, understanding, caring and affectionate children in this world. They care deeply for each other and have the best relationship (at this point in their life) that I could ever possibly hope for. They understand that there is hardship in this world and that there are children who are suffering. My children donate toys to children who do not have any, we make an effort to comfort families who we can, and we are there for our family and friends when they need us the most. My children have the joys of a teacher for a mother who will never give up on their learning of the academics and of life. My children love music, dance, playing outdoors, waterparks, parks, watching birds fly in the sky and a good day of fishing. My children have friendships from birth and easily make new friends and will even help an unknown child if they fall on the playground. My children adapt well to change, understand that mommy and daddy are not perfect and love their lives. My children understand love and know how to give it. They have independence, yet compassion too. What more can I ask for? What more should I instill?

These past few days I have done a lot of thinking. I have thought that I think too harshly on my own parenting skills and rely to much on the thoughts of other. I'm a good mother. I do not need anyone to tell me that. When my children give me a hug every single night before and every single morning before school, I know I'm a good mother. I will not allow negativity to take that away from me. I'm done with those people in my life that make me feel otherwise.

I do pray however that some day, those people who think that everything has to be negative will find joy. That they will find a reason to stop being so negative and find hope for the future. Until then...goodbye negativity....Hello to a good life!

Update with loads of updates!

2010-11-02T21:11:00.003-04:00

Okay, I know, I know...been a long time. Well, life has me pretty busy. Okay..lie. I just haven't felt like posting. But today I was reminded why I should, so here I am.

Paige Alivia is doing amazing! Palate is healed! Remarkable! Speech is great! She has loads of new and fabulous words.
Mama
Dada
Go
Ut oh
more
kitty (where she got that, I don't know) LOL
Baby
Go
NO!
Baba
Bear
Ball
Bye
and I'm sure more that I'm missing.

She is amazing every single day. She will go back for a follow up with her surgeon November 29th to check her speech. I have no worries. Plus, she is hearing everything now. No ear issues and passed her hearing exam! She is a bucket full of energy and keeps me on my toes every day. Mostly though, she's as sweet as pie!

Madison Grace...

Maddie recently won our Waterfowl Little Princess pageant! My beautiful baby girl got a crown, sash and all! Such a pretty girl and so outgoing it's not funny. She has attitude and sweetness. A little of both that suits her just fine. She's such a sweet daughter. She is also REALLY loving her third month of Ballet. She loves her teacher and is learning so much. She started Pre-K this year and I have to say that she is as bright as can be!

Owen Carter...

Last but surely not least...Owen is doing awesome in school! He is learning to read and has a great memory of sight words. He does AWESOME in math and always has an A on his assignments! He has made new friends and past ones. I don't think there has been a free weekend without birthday parties for him and Maddie since school started. They are definitely my social butterflies. I wouldn't know where they got that from?!?? LOL

Hal and I...

Hal is working as an RN in the Meadville Surgery department...so if you need surgery...ask for a different RN. JK!! I tease him about that all the time. He loves his job. Loads to learn and do every day.

I'm still a Behavioral Specialist..love my job of helping families to overcome behavioral difficulties! It's rewarding in so many ways!

So that's us in a nut shell. I have loads of pics on facebook! So you can check out some pics there until I get some loaded here.

Happy commenting everyone!

So many updates!!

2010-08-11T16:23:00.002-04:00

First off, Paige's surgery went well! She had her palate repaired on July 16th. After not eating for 2 1/2 days and being on liquid diet and then soft diet for 3 weeks, she is now starting to eat real food again. She really didn't have any issues eating most of the time. She had no interest in a bottle for 2 1/2 days after surgery. She remained on IV and morphine for the entire duration until the last day we were there. It was not as bad as I thought it would be but it wasn't pleasant either. She had a breathing tube in for the first 24 hours. Her IV infratrated on the last day so it had to be removed. :( She was back to smiling the day after surgery but wasn't really herself for a few days. She did REALLY well with the no-no bands. She played, crawled and EVEN STARTED WALKING while having them on. Best part of all, a week after surgery, SHE PASSED ALL OF HER HEARING EXAMS! No more ear issues hopefully! YEAH!!! We have started to transition her to whole milk now but it hasn't been as easy as it was with the other two. I think it's a comfort food for her.

All in all, she's doing fabulous! Thanks for all the prayers and thoughts! We appreciate them all. We found out the number of people praying for us and it was absolutly amazing! Hundreds of people to say the least. Churches that we didn't know about had her on their prayer list and much more. I really do appreciate it all!

Further updates:

In case you missed it...PAIGE IS WALKING! She kept with the family tradition of walking at 11 months old! YEAH PAIGE!

Paige turns 1 next week!! (August 21st to all you damn forgetful people!) WHOOHO Can't believe it's been a year already

Owen is going to 1st grade in a few weeks!

Madison starts Pre-K in a few weeks!

Madison is starting Ballet the first week of September! She is super duper excited!

OMG I know there is so much more that I'm missing! I'll add new pictures soon! I have a ton on facebook to anyone interested in adding me there!

One week left

2010-07-08T20:51:00.002-04:00

Tomorrow is 1 week prior to the dreaded surgery! I hate surgery! I hate the idea of making my happy baby so miserable! I hate that she is going to be outta it for a couple of days and then so limited for 2 weeks. She is eatin table food every day. How do I tell her she can't eat that? I don't even know if I'll put her in her highchair. Seriously, what's the point?!?! She will just be mad that I can't give her anything more than a sippy cup with liquids in it. This just sucks to say the least.

On a positive note, the kids are playing soccer again. This is Madison's first year. She likes it thus far! Owen loves soccer. Tonight was their first game. We unfortantly missed the real first game so it seemed they were a little outta sorts today. I'm really hoping Tuesday will be a better and cooler day.

Pre-op appointment

2010-07-01T19:58:00.003-04:00

We took Paige to visit her plastic surgeon today for her pre-op appt for palate surgery. I love posting these updates because when people (no names) complain that their lives are so bad, I would love to remind them that they are idiots and that it could be worse. My poor 10 month old baby didn't ask for any of this, she didn't do anything to deserve it. And yet she will have to endure more than most adults do!

Her surgery is scheduled for July 16th. It will last about 4-5 hours. She will be on a clear liquid diet for 2 days afterward. She will then be on a liquid diet for about 2 weeks, depending on how well she heals. Then she can resume to soft foods. She will have a breathing tube throughout surgery and for 24 hours incase her tongue swells. She will have an IV with the option of morphine if she needs it. She needed it for lip surgery so I anticipate palate surgery also. She will have her tongue stitched down so it can't swell into her air way. She will also have a tube inserted into her nose to keep her air way open further. She can use tylenol when we go home but I'm going to ask for tylenol with codeine, although her surgeon doesn't usually use it. But, Paige had a lot of pain the last time. She will be in the hospital as long as it takes for her to start to drink fluids regularly.

So basically we are taking a good natured baby and taking her food away, inserting crap, medicating her, and then telling her that she can't touch her mouth for 2 weeks with no-no bands. Her nurse practioner told us, "I'm not going to lie to you, it's really rough." Oh so glad to hear that! :(

Basically we are not looking forward to this at all. It's going to be absolutly miserable for Miss Paige. She is going to hate us afterward, I think. I just hope it's the last surgery. There is always a chance that she develops a fiscula (hole in her palate), infection or that the muscles will not connect together properly and require additional palate surgery. They stated that they generally assess her speech 3 months after surgery to see if additional surgery is necessary. I guess those speech classes better pay off! I'll be working with her even more than I already do!

SO prayer is definitly needed. Needed during surgery and to ensure that we make it through without grey hair. Ensure that Paige heals and recovers quickly! Lots and LOTS of Prayer!

I have made arrangements for the other two kiddos during surgery. They are going to have fun with Grandma and Aunt Alisha. Their basially two favorite people anyways. So it all works out there. I'm still thinking I may perhaps send Maddie and Owen to daycare after surgery so we can take care of Paige without them feeling left out. I took off 2 weeks after surgery (well working from home basically). But, we are not sure what Hal will be working. That's the tough part. If I'm home alone then I will definitly be sending them to daycare for a reprieve. I don't want them to feel neglected or worse, mommy is mean because I'm stressed. I'm SOOO glad this is all taking place over summer and I can treat the kids to fun times when Hal is home or vice versa. I don't want to think what this would all be like if it was during the school year again. We did that once, don't want to try it again. Lip surgery was nothing compaired to palate surgery. People don't think of it that way because you think the lip is the most noticeable and therefore the most important. Nothing could be farther from the truth. Palate is required for so much and there is still a chance of aspiration with an open palate, lack of speech, etc. This is an important one.

Joys of Life

2010-06-17T21:49:00.002-04:00

What are your joys in life?

Being a mother is one of the best things in life. Having a child look at you for guidance, support and love. Having days where you just sit and talk, paint toe nails, play soccer in the yard, cook smores and catch lightening bugs. Those are joys in life. With school out, it's so much fun doing different things with the kids. We have waterpark days in our yard, get fire works, have friends over, go on picnics, ride bikes, go to the park, and so much more. Those are what makes me smile. I love being able to provide my children with a home that is rich with activities, fun and love. While I admit, we have our days of fustration over the summer with the constant, "I want to watch a movie!" But, we spend a great deal of time outdoors and doing things we wouldn't normally have the time to do.

This summer may perhaps be the very first summer the kids will have to go to daycare. I have always had the summer off but now that I'm working, they may start going when Hal gets his position at the hospital. This is a tough time for me. I do not believe in summer daycare. I want to be home with the kids! I want to paint rocks, draw on the sidewalk, make bubbles, practice reading, and sleep out in the yard. That's what makes summer fun!

We have big intentions for this summer. We are taking the kids to the Pittsburgh Zoo for the first time. They have been to the Cleveland and Erie Zoo but even mommy has never been to the Pittsburgh zoo. We want the kids to think of Pittsburgh as not a scary place where Paige always goes. We also want to go on some sort of vacation at some point. With Paige's surgery in the middle of the summer, that might be hard. We are going to have a water day for the kids and friends. They love this. We get like 1000 plus water balloons and place them in containers throughout the yard. The kids then go nuts. We set up water stuff in the yard and squirt guns. I think this year we might even do fireworks at the end. Too fun! Not sure when this is happening yet though.

The one thing I do not have time for this summer...NEGATIVITY! I refuse to endulge myself in petty crap during the summer. I will not let other people bring us down. We are going to have fun and surround ourselves with people we care about and people who have supported us through life. No negativity allowed! :)

So while I'm rambling (as always). Take a minute today and think about what you are looking forward to this summer and what brings joy to your life!

Happy Summer!

Go baby Go!

2010-06-11T09:19:00.000-04:00

Paige is on the move. This girl is quick. She crawls like a speed demon and she laughs when Mommy tells her NO and she just keeps going. Actually it's more of a evil laugh. LOL And now she is pulling herself up consistently and walking along the couch. She even held mommy's hand and chased Maddie around the living room. She thought it was fun and giggled. She is sooo fun!

On another note, 1 month and 5 days till surgery! Now the million dollar question, who is watching Maddie and Owen for us while we are gone!??!!

Exciting stuff!

2010-06-04T21:02:00.002-04:00

I'm pleased to announce that my 9 month old babe is officially OFF THE BOTTLE!! WHOhOOO! Even with a couple of weeks to spare before the one month deadline before surgery! I'm pleased with that. I really didn't think that she was ready. Just one day she ate a sippy for me and then again for Hal and we haven't stopped since then. Bottles got bagged up and put away and she's officially on a sippy cup! I'm super excited! She was drinking juice for a long time in her sippy, a full bottle worth in fact. But she wouldn't drink her formula. Then all of a sudden..poof she wasn't so stubborn! :) I'm happy cuz this means there is no chance that they have for needing to reschedule her palate surgery. They said she had to be off the bottle for a month prior to surgery. Well, we beat this. :) YEAH!

What's going on with us?

2010-05-31T20:17:00.003-04:00

Just figured I would give an update of how things are going around here. It's been a long couple of weeks with all the festivities of the weekend and the fact that I'm working a bunch. Which is a good thing!

So here goes...

Owen

Almost done with Kindergarten and has only 2 weeks left of school. Bitter sweet moment as I know we are getting old and Owen is growing up too quick.
He has his very first loose tooth. About time as he is 6 1/2 and now just starting the tooth loss process. :)
He's addicted to his Nintendo DS. It's basically all he wants to talk about.
He's playing T ball and enjoys it. Not sure if he's doing it next year or not. I don't think it's his favorite thing to do.
He starts soccer soon. That is his favorite thing to do!

Madison

We are still waiting to see if Maddie gets into Pre-k. She is on the list but we are not sure what's going on yet. I may or may not call sometime soon to find out.
Maddie caught a HUGE 12 inch Crappie all by herself the other day. Daddy swears he didn't help her at all.
We are still deciding if we are going to send Maddie to dance class in the fall. She is looking forward to it but we are not sure of scheduling yet. :( poohey!

Paige

Paige started speech a couple of weeks ago. I think it's pretty worthless at this point as she can't really do much until after surgery but I'm all for at least giving it a try.
Paige has 5 teeth. One of which is sitting on the site where when she was born there was a cleft there. With the help of that wonderful NAM, she now has a tooth there! Pretty great stuff!
Paige crawls! She was army crawling for a long time but now she's crawling like a pro. She's also starting to pull herself up on things!
Paige is a sweetie!

Hal

Hal graduated college and we are still waiting to hear from the hospital on a position. Right now there just isn't one. So he will be working as a floater at this point until a position becomes available. Pretty much sucks but it's something at least.

Mandy

Still working as a Behavioral Specialist. Love my job but would like a straight 8-3 teaching position in the near future. Sent out applications but haven't heard anything this soon into the summer.

So that's a wrap up of how we all are. Life goes on even when I don't blog. :)

Cute Randoms

2010-05-20T19:25:00.003-04:00

Maddie turned 4!

2010-05-20T19:17:00.002-04:00

Can you believe it? I can hardly believe my princess girl is 4! It just seems surreal!

We had her party at the local bowling alley. Loads of fun with pizza, chips, presents and more.

A few pics...

Hal Graduated College

2010-05-20T19:09:00.002-04:00

It's finally time! Time to FINALLY move on with our lives. Hal graduated Clarion University on the 8th of May. He is now going to be a RN. Which is awesome. I'm working mad hours as a Behavioral Specialist, so we can finally move on past the college days. I love it. At least for a little while before Hal decides he wants to go back to school. Sometimes I actually miss being in college and learning new things but now I'm self motivated to learn about my clients.

Any how, Hal had a pinning ceremony and a graduation. My camera was being stupid so most of the pics sucked, but the kids looked adorable! Here's a few of the pics!

Oh and the kids are the ones who got to actually pin Hal at the ceremony in front of about 200 or more people. Very cool!

Maddie was being kinda silly but they were both very good throughout both ceremonies! Thank goodness! They both took turns playing games on my iphone. That was the best babysitter ever! :)

Change in Plans

2010-05-02T19:50:00.001-04:00

Hal got a phone call from Dr. Grundwalt's office this week. They called to postpone Paige's palate surgery. They are now saying they think she is too young. They told us all along that 9 months was okay because she was doing so well. Now they are saying they want her off the bottle for a whole month and that they will wait till she's 11 months. So her new surgery date is July 16th. I'm pretty annoyed but kinda releaved. It has been hard to take her bottle away from her, she's sooo young. But, this gives us a little more time to get her switched completely to a sippy. Which she is doing really well at. I had just planned to have her off and ready to go by surgery. Now they are being a little more picky about it. Not quite sure why. We were suppose to go to a cleft team meeting on Monday. Erica and I think that she got bumped because another kid needed to get scheduled and they figured she was young anyways. Other than that, not sure what has changed in 2 weeks when Hal was there and they were saying we were still on for the surgery. They also told Hal that she could have her touch up surgery when she is 3 and not 5 but now I'm not holding my breath for that. ARG!

Anyways, Paige is doing really well. She is starting to really motor around. She is babbling really well and is just a ball full of energy. She is one of the sweetest (with Maddie and Owen included in there) babies I know. Paige literally can light up a room and she's sooo good all the time. (knock on wood). She's literally an angel baby!

Well, anyways, just a quick note to inform all that surgery has indeed been postponed. I guess it too gives me more time to figure out who is going to be watching Owen and Maddie during that time too. I guess we will see.

Thanks for reading!

March of Dimes

2010-04-21T13:36:00.002-04:00

Recently, I was contacted by a representative in Germany asking if I would be interested in using Paige as a spokesperson for the March of Dimes there. One of my very good friends live there and she must have told her our story. Of course, if it gets more help for cleft lip and palate research, I would do almost anything. The March of Dimes does research for cleft lip and palate. So I said yes. I wanted to share with you the poster that they used with Paige's face on it. I was proud to be her mama!

Great news!

2010-04-05T19:54:00.002-04:00

We have a.....

HEARING CHILD!!

I took Paige to Pittsburgh for more testing. They retested both of her ears and the left ear passed! This is huge considering that's the one that failed at birth! But her right ear is just too full of fluid to tell. They said it shows that the tube is blocked with something, such as a ton of drainage. Duh!??!! :) So they will retest her hearing after her palate surgery at the end of May when the drainage has stopped. Hopefully at that point, no more hearing issues! The ENT said that she will probably not need more tubes replaced until next summer. Which is good! But he will check them out at palate repair time.

So that's the news in a nutshell but I'm really happy to finally have a passed hearing exam! Made my week!

Was thinking...

2010-03-28T15:55:00.002-04:00

of putting a password on my blog! And then only giving it to the people to comment.

:)

Update Sunday!

2010-03-28T15:39:00.004-04:00

Just thought I would post a mini update. Paige meets with Early Intervention tomorrow. It's just the initial paperwork to see if she qualifies for services. They already said that she would qualify but that I would just get a choice if I want to start now or later. I'm torn by all of this. I'll say why... so I know I'm not perfect but I am a qualified special education teacher. I do know quite a bit about cleft lip and palate. I know a lot about speech too. Plus, it doesn't hurt that my sister is a speech pathologist. I know a lot of sign language so that's something I'm already teaching her. So at this point, do I really want to worry about an hour a week of therapy that really isn't going to do much good at this point. She's saying vowel sounds. She can't say constant sounds because there is no palate. She moves her tongue like a crazy woman. She is nasally when she gabs but wouldn't you be if you could put your tongue to your nose inside. :) She is developmentally where she needs to be. She rolls, sits like a pro, and so much more. She's a happy baby. She is responding to sounds! (Getting sooo much better btw). So do I really need someone to come to my house and tell me what I already know. Not sure yet? She will get evaluated for 2 hours in a couple of weeks. So at this point I will know more of what they think she is capable of doing. If there is a huge delay, I will go ahead with it. But, I guarantee you, there isn't. She's just like any other baby. Jonathan (Jen's baby boy) and Lily (Erica's clefty beauty) are all within weeks of Paige and they are developmentally the same. Lily is a tad older than Paige and so is Jon but they all are doing the same. Plus, this is my 3rd child and I know quite about about child development (I guess I would have to with my current job). So I just don't know.

I know at this point I'm rambling.

Would it hurt to start Early Intervention, no! Probably wouldn't hurt but I also want someone who is already been working with cleft babies. I don't want any old Joe that knows a tad about clefts. I already have had a bad experience with an idiot peditrician that I wanted to rip apart. I don't need an idiot therapist too. Oh another note, Paige really is doing awesome. She has been responding to sounds really well. I have gotten a lot of wax outta her ears since we stopped the drops so I'm hoping she is doing better now. She will get retested April 5th in Pittsburgh! Here's to hoping!!

Plus, I think if you made it through this long boring post, then you deserve a prize...so here's Miss Paige in her favorite toy!

Enjoy...

Memory Monday

2010-03-22T19:40:00.001-04:00

Paige's First Signs

2010-03-14T15:56:00.002-04:00

I actually started to sign to Paige a couple of weeks ago. But now that I have to really teach it to her, it's important for the people around her to do it also. Therefore, I will start to list the signs she is learning.

If you are around Paige, please learn these signs so you can communicate with her. That includes; Grandparents, aunts, Uncles, cousins, daycare providers, ect.

Thanks!

Paige's signs:

MORE
ALL DONE
MILK
EAT

Just plain bad news

2010-03-10T20:55:00.002-05:00

I'm trying NOT to get upset about this. But, just a little history. When I was younger, before I met Hal...I wanted to adopt a deaf child, and I had friends who were profoundly deaf. I did American Sign Language classes in college, wanted to master in deaf education and teach deaf children, even spent days practicing my sign language with friends by playing "deaf" while being in a mall for a class project, I talked fluently in ASL for a while with a co-worker who is profoundly deaf. Not to mention, my dad is profoundly deaf. When my dad was very young, he had the mumps. Back then, if you had the mumps bad enough, you could lose your hearing. My dad lost all but about 20% in one ear. He wears only one hearing aid because it wouldn't matter to wear one in the other ear. So I have a history stepping in and out of the deaf community. But, never in a million years did I ever think I would bore a child with a hearing impairment! Never in a million years did I ever think that I would be able to handle that. But, here I am...faced with this great possibility!

Paige had an ENT appointment today. One of many appts at Pittsburgh Children's Hospital Ear, Nose and Throat clinic within the main campus hospital. We have met all of the ENT doctors at this point. Dr. Alper who is the main throat dr for Paige's larigo malachia. Then Dr. Kitso for her ears. Then Dr. Chi for the ear specialist. Then we met another Dr today (his name is lost in my memories) who is more familiar with cleft babies. Why we haven't seen him until today is beyond me. Perhaps, all these other doctors just figured we would be sent on to another doctor and SOMEONE would figure out why Paige's ear has been draining since October with only a few days without it. We have tried just about everything to stop this draining. Antibiotics, 3 different drops, exploratory surgery during her lip surgery, a wick, you name it, I think we have tried it. Nevertheless, the problem still exists. Then we meet Dr. Forgethisname today and his solution is "this just happens with cleft babies" Okay, why couldn't someone have told us that sooner??!!! He said at this point the draining is not bacterial or fungal, it's just drainage from her middle ear. Well great, established that, now what? He suctioned her ear AGAIN and she screamed as always. Next, I told him how she has never had her hearing retested since birth.

History about hearing retest. Paige failed the left ear at birth and pasted in the right ear. Tubes were put in in October to help the middle ear disease that is caused by clefting. So they tested her hearing today. After 3 different tests, basically all we know is that she did not pass on either side this time!!! They said that the right ear is too full of fluid. And the left ear, they have no idea why it didn't pass. Indicating more a problem that we originally thought. I asked how much she is hearing and they said it wasn't consistent enough to know. Now they want to put her under in a surgery and then retest using a type of brain scan that will tell if the ear are working at all. HORRIBLE! Another thing to put my baby through. They said it should have been done when she had her tubes put in but for some reason, it never happened. So here we go putting her under for a test. BLAH! It makes me sick to think about it. They did a hearing test in a sound proof room. I was there with her and she did respond to sounds in the environment but simple sounds at voice level she did not respond to. That to me is HUGE. She can hear if you yell at her but she can't hear if you talk to her. She will respond when you talk to her but she doesn't babble. She laughs. But she is no where near saying her first words.

So the main solution to all this is...palate surgery! When her palate is closed there will be no more drainage. There will be a possibility that they will just go ahead and retest her hearing then and hopefully she will be able to pass. But, there's no guarantee and the doctor did not indicate either outcome. I pray it's conductive rather than permanent but at this point we do not know. We are starting ASL with her to help her to communicate if there ends up being hearing loss for longer than we expect. I will teach Owen and Madison also to use ASL with her just incase. It never hurts to teach it even to hearing children.

So that's my long explanation for how today was. It sucked! Hal and I are just plain going with the flow with little Miss Paige. We will continue to do what is best for her but it's really hard. No one truly understands how hard it is to see more diagnosis thrown at your child, unless you have gone through it. It's difficult to know that my baby girl may never be able to hear everything. I pray it's not true but at this point, it wouldn't surprise me.

I'll update again soon

Recent News

2010-03-07T15:19:00.003-05:00

I know it's been a while. I'm working a crazy amount of hours every week trying to get things done! So I really haven't had much time to post and when I do, I'm exhausted and say I'll do it later. So here's a recent update all of the kids...

Madison is same old Madison. She is almost 4 in May, can hardly believe it. We are getting her signed up for Preschool in the fall. Hoping she gets in! She is a ball full of energy and little Miss Princess as of late. She wants everything frilly and pink! Very cool but a little annoying.

Owen is learning so many things in Kindergarten. He is learning to read and has learned quite a few site words already. He's like a little sponge! He's doing well in school, all in all. He will start T-Ball here in a few weeks (ANYONE wanna buy a ticket to win 750 dollars?) Just had to plug that in there. :)

Paige...dear Paige. Paige is doing wonderful. She is starting to crawl and eats lots of baby food. She gabs all the time and is just a really sweet baby. She is now putting herself to sleep, which is a blessing. Her lip looks fabulous and it's healed really well. She really is doing great. Except....her ears. We have had to take her to Pittsburgh many times in the last month for a constant ear infection that she has had since October. They keep trying new drops, antibiotics, clean and sucking it out. It's nuts. The poor girl is so used to all of it but it's really no fun at all. This last time, they put a piece of stuff in there that holds the drops in longer. We tried it once before but it fell out the very next day. It has been in there for a few days and she will have it removed on Wednesday. Problem is..if it doesn't get better, we are talking another surgery to have the tube removed. We are not sure yet if they will be replaced but more than likely will. Most cleft babies have tubes for a few years.

Paige's cleft palate surgery is scheduled for May 26th. I'm not really sure if it will happen or not, because she will only be 9 months old and she needs to be off the bottle. So we will see. I have talked to other cleft moms and their child didn't need to be off the bottle, so we will discuss with Dr. Grundwalt in April.

So that's a quick update! I'll update more when we find out more about her ears.

so here's a couple of pics to keep you all happy. :)

Owen is now 6 years old!

2010-02-10T13:46:00.003-05:00

He had a fun party at Pizza Hut. He had about 13 friends. They played games, ran around like crazy people and ate good food. Here's a few pictures.

Updated 1 month pictures after surgery

2010-02-10T13:39:00.002-05:00

Big month for us! Here are some recent pics of Beautiful Paige!

Just food for thought...

2010-02-08T14:38:00.001-05:00

Just was thinking of something Owen said to me the other day. I am not sure how I feel about this and I think it almost breaks my heart that my children have had to endure this last year watching their poor baby sister go through so much. But, our friend recently had a beautiful baby boy. As I was excited to receive the text message of his picture, I showed Owen. Owen LOVES babies. He's probably the best child I have ever seen with a baby. He plays with Paige, talks to Paige, and points out every single time he makes her smile! But, he said to me. "Oh mom, I can't even tell!" as we sat looking at this picture. "Can't tell what Owen?" "Mom, I can't even tell that he had his lip fixed." That broke my heart. Yes, your baby sister was born with something that other children do not have. How do you explain that to such a sweet boy?!

PLEASE HELP!

2010-02-02T18:51:00.003-05:00

When you have a child with a cleft, your whole world changes for a brief time. You forget that the rest of the world has issues and heartbreak. You forget that there are people worse off in the world. It's overwhelming to say the least to think that there is something "wrong" with your child. As time passes by, it's easier day by day. I now look at Paige and I don't even think about her cleft. I don't think about the heaping hole in the roof of her mouth. I don't think about the possibilities or the upcoming surgeries. I think of how beautiful and sweet little Miss Paige truly is. She really truthfully lights up my life.

But, there are children in this world that do not have this in their lives. Thousands of babies are born each year with a cleft lip, cleft palate, unilateral cleft lip, bilateral cleft palate, soft cleft palate, hard cleft palate, full cleft palate and worse. These children do not have the capabilities that our children have! They do not have a wonderful cleft team like we did! And for this reason, it's our responsibility to help them. Please think about these children as you are getting your income tax this year. Think about what affect you can have on a single child.

Children with clefts are often made fun of. This holds true even in our small community, unfortantly! Children with clefts are often called monsters and shunned by communities in poor countries. With as simple of a 45 minute procedure overseas, these children can begin to have a wholesome life.

Please take just a minute and cry along with me on this video created by SMILE TRAIN. This is an organization that provides free of charge surgeries to children in poor countries. Think of it this way, the cost of a NAM in the USA is 10,000.00. If we did not live in such a wonderful state of PA, we would have had to pay a good portion of this. But because Paige was born in PA, she fell under the loophole clause provided by the medical system. Her surgery, NAM, ENT, Plastic surgeon, etc are all FREE of charge. This is a luxury that other children DO NOT HAVE. So give back...give back in the name of Paige who THANKFULLY does not need this support of money. (I would have paid the 10,000 if I had too but these families CAN NOT afford this)

Watch this video and decide for yourself...do these children deserve $1.00 of your money to help them with the 250.00 cost of a surgery.

Now wipe those tears away, get out your credit card, visa, debit and give as little as a dollar to help these children in honor of Paige. Visit Paige's Smile Train website to donate!

http://www.smiletrain.org/site/TR/Events/General?pxfid=5110&fr_id=1040&pg=fund

Just an update

2010-01-25T16:05:00.002-05:00

I'm without pictures this time. Just don't feel like digging through them to post them, I'll do it later.

Anyways, Paige got off her No No bands on Thursday. They said she looks great and her GUMS are healing. We are pleased about that. There is still no guarantee that they will fused together properly and that a tooth will develop in that area. It's a wait and see kind of thing. But, we are hopeful as always.

We also begged to be seen by the ENT while we were there. Her ear has been running since October without stopping. Thank heavens we did ask because here to find out, they were treating her for a bacterial infection when it's been a fungal infection. She has new drops and the drainage has since stopped! That goodness for Mother's instinct. I wasn't going to keep putting those stupid drops in her ears if it wasn't doing anything, I figured something els was up. Why they didn't call to tell us her culture came back fungal from surgery is beyond me. ARG!

Anyways, she's back to her good ol' self today. The last few days have been fustrating because she keeps stopping eating and refuses. I can say today has been a good day! Her scar looks fantastic. Her nose has dropped some since surgery but that was to be expected. She will probably still have a touch up surgery at about age 5 for anything with the nose or scar. We will be scheduling her palate surgery any day now. It should be around June.

So all in all, she is doing great! She has been a pleasant baby through all this (with a few tough nights as expected) Thanks to all who have been praying for us! It's greatly appreciated!

First Taste of Bananas!!

2010-01-22T22:41:00.001-05:00

We were so excited to be able to start real baby food now. Paige is ready but I'm pretty sure she hates her high chair. She's pretty scared of it. :) She LOVED about the first 5 bites of bananas. She opened her mouth and swallowed like a pro. Then all of a sudden, this happened....

New Pictures

2010-01-22T22:33:00.003-05:00

January 17th

January 20th

8 days post operation!

2010-01-16T17:10:00.003-05:00

Daily update....

1 week post op

2010-01-15T16:32:00.002-05:00

Absolutly adorable and amazing! Of course, wearing camo bib for daddy. (take a guess who took this picture) LOL

Day 6

2010-01-15T16:04:00.001-05:00

This is before her appt with Dr. Grundwalt. They were all very impressed with her outcome. Her nose looks fabulous! They also removed the bluish/purple bandage that was over her lip in this picture. The following pictures for Day 7 so what it looks like now!

More day 5

2010-01-15T15:59:00.002-05:00

Just because she's so cute!

Day 5

2010-01-12T12:43:00.003-05:00

Day 4 of a new smile!

2010-01-12T12:38:00.002-05:00

Day 3 after surgery!

2010-01-10T12:08:00.001-05:00

She is looking better and better! She slept over 8 hours last night and is eating better too. She smiles and coos and tries to talk. She isn't completely back to herself but I think it's mostly because she can't move her arms and such. She is getting there though. We are very proud of how big of a girl she is!

Final update from the hospital

2010-01-09T14:38:00.002-05:00

We are more than likely going home here in an hour or so. Hopefully, anyways! They still need to remove her IV, discharge papers, give us more no-no bands and head us on our way! She is doing really good. She has her pain managed with simple tylenol and it seems to be doing the trick! That goodness! She JUST ate 4 1/2 ounces, which is the most she has eaten since sugery. Her cheeks are still pretty swollen, along with her lip. Her nose looks a little tight because they over do it so when it settles, it will look normal. All in all, she's perfect AGAIN!.

Paige sees Dr. Grundwalt on Thursday to get the liquid bandage stuff removed. That will probably NOT be much fun at all. She will then still have no-no bands for another week after that. We will then tape her lip, massage and apply pressure for 6 weeks to make the best scar possible. So not quite done with the tape just yet. Oh well, it's nothing like having the NAM (which I secretly stole before someone could ask if I still had it) Hoping no one says anything so I can keep it. Weird? LOL

We also talked to Dr. Grundwalt about palate surgery. We wll be setting the date for that in a couple of weeks. SHe has to be completely off the bottle before surgery. We are thinking end of May, beginning of June. (So Alisha...don't plan to go to Mark's all summer. :) )

Now is just waiting game again. Wait and see if the gum fusion works, wait to see how the scar forms, wait to see how the nose looks after it heals, wait and see when surgery for palate is done. BUT, thankfully we are done with surgery #2! She is and looks amazing!

2am update!

2010-01-09T02:02:00.004-05:00

Yes I'm up. Are you surprised? Paige is currently in her bed playing with some toys and being a good little girl...

Paige did wonderful! 6 1/2 hours of surgery and she has a whole new smile. she has just started to eat this last bottle, 3 1/2 ounces. she is on morphine. tylenol, antibiotics, and an ear med. Vitals all taken every 2 hours because she has arm restraints. She is really swollen but the line is so small and amazing!!! her lip has liquid bandage along with dissolvable stiches. It looks blueish/purple right now from the liquid bandage. She smiled once or twice but is really unable to move her top lip because it s so stiff from the bandage. She slept 2 1/2 straight hours and is starting to fall back to sleep. Hal and are takng turns sleeping but i might be able to sneak away when she falls back to sleep! :)

Thank you for all the prayers and thoughts! We love you all.....

This my attempt at my new smile. Problem, it's still a little too swollen, numb and too tight with the bandage. Cute, nonetheless!

Fresh from surgery

2010-01-08T18:22:00.002-05:00

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!

2010-01-07T07:52:00.004-05:00

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

2010-01-06T16:23:00.002-05:00

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!!

2010-01-02T11:46:00.003-05:00

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!

2010-01-02T11:38:00.003-05:00

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!

2009-12-30T21:52:00.000-05:00

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

2009-12-17T16:52:00.000-05:00

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! :)

Lots of Pic of Paigey!

2009-12-08T20:51:00.000-05:00

I know I post lots of pics of Paige but trust me, I used to post lots of pics of the other two when they were little too! So it's just Paige's turn. LOL Enjoy!

Thanksgiving

2009-12-08T20:09:00.000-05:00

We had a wonderful Thanksgiving. We visited with Hal's family and my family all came to visit also. Owen had a feast at his school and they made food to share. They did some dancing and singing. Very cute. Here are a few of the pics from this joyous time.

Quick Update

2009-12-02T16:13:00.000-05:00

We got some unsettling news today. If you know me, you know I can't handle when things are unsure. I like to plan, plan, plan for everything in my life. We took Paige for her NAM and ENT appts today. At her NAM appt, I mentioned to Dr. V that she has been fussy with the bottle lately. She looked in her mouth and said what I have been saying for a few days, she's teething! Problem is, Dr. V thinks she might have a tooth that is coming in on the top! NOT GOOD! If it ruptures before surgery, they may not fuse her gum line together at all, requiring a bone graph later on! The one thing that I dread most for Paige. The one thing that we thought we wouldn't have to deal with. Unfortantly it looks like we might if it happens to be a tooth. PRAY IT'S NOT!

Then we took Paige to her ENT appt for the follow up for her tubes and scope. They said that her left ear tube is completely clogged and gave us a really strong ear drop for that side. Then, they said that her other side is still draining and to continue drops on that side with a different type of drops. They did NOT retest her hearing and they won't until January 6th now. SO I was hoping we would have an answer today and now it looks like we will have to wait a whole month longer!

I'm kinda upset by all this. Everything was looking so good and now it's just still a waiting game to see if her gums are okay to fuse and to see if her hearing has improved! January is a big month for Paige!

Jump Jump Jumparoo!!

2009-11-22T11:16:00.000-05:00

Paige got her XMAS gift early this year. I figured she is already almost 15 pounds and I want her to have a lot of use out of it. So we got her a Baby Einstein jumper. She LOVES it! It's so cute to see her focus on the toys and try to manipulate them! Here are a few pics!

Cleft Update

2009-11-22T11:13:00.000-05:00

Paige's cleft is so close to being closed. We are making the steri straps tight and making sure she has all of her visits (not that she has ever missed one!) :) It's looking so great!

Sisterly Love

2009-11-22T11:08:00.000-05:00

Maddie just loves her baby sister! They are so cute together!

Paigey update

2009-11-17T06:31:00.000-05:00

Paige is doing really well! She had her NAM adjustment this last Friday and she is over 14 pounds now. Little chunky butt. :) Dr. V told Hal that we need to start making the steri straps tighter as she is almost done with the NAM! She said that the tighter we make it, the closer her cleft will become! Of course, I can't over do it and squish her cheeks like a fish. LOL Dr. V also said that her nose looks awesome and she should have a really wonderful outcome after surgery! I can't wait. Not too much longer and NO NAM! I'm a little scared about her eating without the NAM but I plan to talk to Matt about that at our pre-op appt. I tried yesterday and boy is it different than feeding with her NAM in. I'm just not used to it anymore. But all in all, Paige is doing really good. Her reflux is a little more under control from the surgery when she started to spit up a LOT. But, now it's not as bad.

Talk to you all soon again. Don't forget to comment!

Proud Mama Moment

2009-11-15T16:48:00.000-05:00

There are somethings just make you proud to be a mother! Today is one of those days. Owen and I had the rare opportunity to spend some quality time with just the two of us. So I decided it was time to teach him how to tie his shoe! I have a shoe tying pillow and I showed him 1 time how tie his shoe the "grown up way" without using bunny ears. (I hate bunny ears, I think it's harder to teach as there are too many things for their little fingers to hold). Anyways, I showed him the one time and then walked him through it one time. Then, I set him lose! He did it the very first time by himself!! I was so proud! He's growing up! He practiced a few more times on the pillow and then did it on his shoe! He did awesome! I'm one proud mama!

Life in Limbo

2009-11-10T14:21:00.000-05:00

I can't stand when things are left unfinished! I am the type of person that when something is started, I can't sleep until it's done. Point in case, this new possible job! I interviewed almost 1 1/2 weeks ago. I finally hear from them today to tell me that they are still trying to contact my references. The problem is, I'm suppose to give Head Start a 30 day notice. So if they hurry up and tell me, the sooner I can get started! Then, my current BSC job calls today to tell me that I'm picking up 2 more kids. YEah for the pay check as it does pay well but boy is it getting hard to schedule around Head Start. I'm there all day long and while BSC and MT is flexible, it's not that flexible with families schedules. So I hate this waiting to see if I got the other job so I can quit Head Start and only work as a BSC or MT. It's getting too difficult with our already busy schedule.

Also, in other news, I have officially stopped breastfeeding. The last day I pumped was almost a week ago (last Tuesday). I finally just figured that it was more important to have a sain mother than to pump 1-2 bottles a day. That's basically all I had time for. I feel awful about it but you have to make a sacrifice some where. She is doing awesome on formula so I'm happy about that. She has been spitting up more than normal since her scope and I plan to talk to her doctor about that but all in all, she's doing great.

Madison is well too. She has been full of fire lately. I came home from work today and I think she talked my ear off. LOL I'm so glad that she is happy being home and not missing being at daycare all that much. They go on Mondays and she looks forward to that but right now, that's all we have to do. Makes for a lot less of a bill. :-) Can't afford that right now.

Owen is doing well. He has started to read. Can you believe it? He's starting to read. It's amazing, He's amazing. He really has done well in Kindergarten. You know me though, the teacher in me wants him to do super great. I have to back off and remind myself that he is doing good.

Hal is almost done with school. I can't wait! It would make my life a lot easier if he had a regular job and didn't have to go to school but I will live. I like having him home with the girls during the day. They have really bonded.

Okay, that's a brief update on us. Please don't forget to comment! I want to hear from everyone!

Paige's appointments until Surgery!!!!

2009-11-07T10:01:00.000-05:00

These are the last of Paige's NAM appointments until Surgery! We only have 7 more NAM adjustments! Can't wait for this to be over and done with the NAM!

November 13: NAM adjustment and Eye Appointment

November 18th: NAM adjustment

November 25th: NAM adjustment

December 2nd: NAM adjustment, ENT follow up with hearing test

December 9th: NAM adjustment

December 17: NAM adjustment and Pre-Op appointment for lip/nose/gum surgery

December 30: LAST NAM adjustment

January 8th: SURGERY!!!!!

ENT Surgery Update

2009-11-06T21:53:00.000-05:00

This has been yet another long week. I'll give you the short version

Wednesday, the entire family headed to Pittsburgh for a NAM appointment and to stay the night in a hotel for Paige's ENT surgery on Thursday. The NAM appt went as planned and I even was able to ask Dr. Vechionne if she thought Paige would be ready for surgery in January and she said "more than likely." That's about the most she can say "legally." I was pleased with that.

We then headed to the hotel and went and got dinner. Then Paige got to meet her new friend Liliana. Lily is one month older than Paige and also goes to the same cleft team. They even have the same plastic surgeon. We hung out with Lily's mom, Erica and had some really good conversations about the NAM and other fun stuff. It was really nice to get to know Erica and Lily. It was very sweet to see the girls together and really nice to know someone who understands completely what we are going through. Lily's parents knew about her cleft during pregnancy so we come from a different beginning but have defiantly the same outcomes so far. Lily is scheduled for sugery one week after Paige. Lily gets her nose shunt next week also. We look forward to getting to know them better and seeing the girls grow up to be great pen pals. :) Here are a few pictures of the girls together!

Yesterday, we had to be at the hospital at 6:30am on Thursday. We arrived a few minutes early and everything moved quickly. Paige was not allowed to eat after 2 am so she started to get fussy but was really great all morning. We talk to Dr. Alper and the anestialogist. We also met a nurse who had a cleft lip and palate. He told us his story and how his surgeries went. Paige went into surgery at 8:00am. She was there until 9:45 when we were called back to see her. She didn't even look like herself. She didn't open her eyes and her face was really white. She was screaming! She stopped for a minute when I picked her up but continued to scream then after. I got her to eat 1 ounce of sugar water and then waited for Dr. Alper to give us the results. She was still very upset and they gave her a really strong medication to relieve the pain. She calmed then after but I was unable to put her down. I held her from 9:45 until 4:30 with only putting her down a few minutes to go to the bathroom and to change her diaper. She wanted to be held and by all means, I was holding her!

Dr. Alper came to talk to us and told us that everything went as planned. (Although they told us it would only be a 45 min surgery but ended up being 1 hour and 45 mins). He said that her scope indicated a very mild case of reflux with a little swelling around her larynx. He said it wasn't bad at all. Her laryngo malacia is mild also and really is not a concern as long as the reflux is managed, which it is. We are good with her Zantac and thickening her bottles. He said that her ears were pretty bad. He said both sides were completely full of fluid and it was thick. They put a incision in her ear and inserted the tubes. He said that they sucked out as much as they could but her ears would still drain over the course of the week. She has drops to use for a week and can not get her ears wet at anytime. He did say that with the amount of fluid in her ear, it was a good indication of conductive hearing loss and NOT permament hearing loss. THANK GOD! She will have her hearing retest December 2nd.

At this point, Dr. Alper told us he wanted to keep her overnight for observation. I was NOT happy about this. We had the kids at the hotel with Aunt Jess and we had NO plans of staying another night. I didn't even have my wallet with me or clothes, brush, toothbrush, nothing! At this point, we had no choice but to let Hal pick up the kids and head for home. So at about noon, Hal picked up the kids and left. This was not fun as I hate it when he can't stay. However, Paige and I were fine and hung out in the recovery room until after 4pm. They then moved us to a room on the 6th floor. We did NOT have a private room and this pretty much sucked. Expecially when you share it with parents who really didn't seem to understand much of anything. They kept turning the temperature down to the point where Paige's hand was purple. I was getting annoyed. I will spare you the details but it definitly wasn't a good night and I got little sleep. Paige also was woke up many times because of the situation. So right now, she is sleeping soundly in her bed.

They released us this morning and Hal came to get us. Talk about putting mileage on our vehicles! Paige is doing well now and is in good spirit! She was "talking" to me earlier and is doing really good. I can tell a difference in her hearing already so I really pray that it does the job!

So there's a quick update of what happened over the course of 3 days. I am so happy to be home and allowing Paige a break before her January surgery. I will be requesting a private room for that!

Thanks to everyone who checked up on Paige and her progress! As always, we appreciate the people who take the time to keep up with Paige. Love you all!

Nervous Breakdown??

2009-10-27T13:17:00.000-04:00

This might be what people call a nervous breakdown! LOL I am finally there. Years of over working myself or over working my brain has finally gotten me to the point where I think I need a vacation. :-)

Things on my mind. WORK! I started a new job! I love my job. I currently still do teach at Head Start but there are many things that I do not enjoy about my job. I LOVE the kids and I love teaching. That's where my heart really is but they quite frankly do not pay me what I'm worth with a masters degree. Sad but true and everyone I work with would agree. So I started a job as a behavioral specialist consultant and mobile therapist. Right now I'm doing a lot of MT hours (not a lot but some) but these all take place after school for most kids. This is so time consuming and hard to accomplish as I work all day at Head Start. So on Friday, I have an interview for another BSC job. This would would be ideal and I could quit my job at Head Start. I have to give HS a 30 day notice which will be hard to do but it would benefit my family a great deal more for me to quit and work only 1 or 2 jobs instead of 3!! I just don't know how I would be able to fit it all in. It would be about a 70 hour a week for a month. That's impossible considering Hal is gone Monday, Tuesday, and Thursday for class and clinicals. I WILL NOT leave my kids in daycare that much. It's not fair to them. So I have a lot of decisions to make. It's difficult as I don't want to screw over Headstart.

Then another topic...BREASTFEEDING! I can not believe I want to say this but I'm so done breastfeeding. Did I mention how many hours I'm working? It's impossible for me to pump as many times at it requires to keep up production. It just isn't working. What's the point of stressing me out more just to give her 1 or maybe 2 bottles a day. Then there is this part of me that says "1-2 bottles is better than none!" I'm so torn on this. I'm a HUGE breastfeeding advocate. I get on my friends who chose not to breastfeed. I totally respect their choice but hope that they at least try it. It's so much better for them. But with Paige not being able to actually breastfeed, I'm draining in all these pumping sessions. 8-12 times a day is the recommended pumping amount. I am (on a good day) pumping only 4 times. I have a life to live and kids to raise. I do NOT have the time to sit around and pump. Wish I did, God knows I wish I did!

So I'm a bit on the stressed side right now. I'm trying to juggle more things than I have the hands for. It's rough! Then there is always Owen's homework, Madison in general, taking care of Paige, NAM appts for Hal and the kids, being home when Hal is at clinicals, scheduling clients. Boy am I tired. So bear with me if I get a little grumpy!

Upcoming Appts

2009-10-23T16:33:00.001-04:00

Paige's appt schedule for those who want to know. :)

October 28 2:00 NAM Adjustment at Children's Hospital

November 3 1:00- Pediatric Appt at Meadville

November 4th 11:00- NAM adjustment

November 5th: ENT SURGERY!!

November 13th: NAM ADJUSTMENT, Eye appt

Who's here??

2009-10-18T21:35:00.001-04:00

Cry a little with me!

2009-10-18T15:09:00.000-04:00

True and honest blog...

Today I was reading on a message board I frequent. A woman wrote that she had a baby born born August 2009 and was still born. She was directed to another forum with other wonderful woman who have dealt with the same. I decided to follow this direction and head over to listen to her story! Sad! I was reading about all these poor woman who during their pregnancy found out that their baby had passed away. Many of them actually had pictures of their sleeping babies. So tiny, so fragile and so innocent. I had to stop and just take a sigh of relief for my little Paige. There are many days when I think "why us!?" Why did we get picked to be her parents. Why did she get picked with this "gift?" I have these days less frequent now but they are still there at times. Then, when I read about these other stories, I stop and humble myself. We are blessed! Paige is a beautiful little girl who smiles every single day. These babies will never give their Mom their first smile! As I sat there reading these stories, I just hugged Paige a little more. She is perfect! She is here with us blessing us each and every day!

I seriously look past the clefts anymore. I remember reading back when she was first born from moms who had cleft babies. They would talk about how they missed their baby's smiles after surgery. That the baby looks so much different and it was a shock. I remember thinking "NO WAY I won't miss that cleft at all!" And you know what, I will. I will miss her big gummy smile. I will miss all those because that is her! That is my precious Paige right now. Will I miss putting in her NAM every day and taking it out at every feeding? NO WAY! But I will miss those cute smiles and chubby cheeks!

So a note of new found wisdom, take a moment today and think about the one thing in your life that saddens you. Really think about it because I guarantee you, there is someone who is dealing with more than you are!

8 weeks old!

2009-10-17T10:17:00.000-04:00

Check out my beautiful baby Paige at 8 weeks old! Isn't she just so sweet!

Friendship

2009-10-13T21:01:00.000-04:00

Jen- I sit here looking for a friendship poem to show how much I appreciate our endless hours of bitching, crying, and heart warming conversations. But, as you know I'm not a sappy person and all I could find was "glad we are friends" "when we first met" blah blah blah! So here's straight and to the point...

Thank you for the endless years of friendship where we can talk about anything. Tonight was refreshing!

Ode to Paige

2009-10-12T22:23:00.001-04:00

PERFECT BEAUTY
by Joanne Green

The Great Sphynx of Egypt has, over the years, Lost her nose.

Venus de Milo has no arms,

And the Liberty Bell sports a great, wide crack.

And yet each of these is considered to be a thing of beauty,

A standard of perfection.

And so it must be that we do not, as one might imagine,

Look to perfection in order to see beauty,

But rather, we look to beauty,

And thereby see perfection.

7 weeks progress pics!

2009-10-11T16:21:00.000-04:00

Just a warning, Paige is usually NOT very happy when I get these pics. It's about the only time she lets me see in her mouth is when she is mad and/or crying! LOL So just pre-warning you now, these are not her best pics. :)

This is Paige's NAM now with the nose stent. It helps to mold her nose. It will be added to each week to make her nose mold prior to surgery.

Paige with her NAM and nose stent now. It doesn't bother her. She has not cared that it's there at all. Actually it keep her nose open so it really does help her to breath better. Before, her nose was flat on that side.

You can see Paige's gum line that has moved a considerable amount. This week has been a really dramatic difference. Her gums are a bit red from the molding but it doesn't bother her at all. It's such a slow process that while we can tell a difference, I doubt she can.

Check out how open her nose is on the right side now. This was all flat prior to this week and the nose stent. Also, you can see how far her gums have moved on the left side. I believe her cleft is only about 6 mm now. When she has her surgery, they will straighten out her nose so that the cavities are the same on both side and symetrical.

Thanks for looking!

Recent Pictures of the crew!

2009-10-11T13:56:00.000-04:00

Home soundly from the hospital!

Comfy, cozy Paige!

Hanging out with Paige!

Sun was in our eyes at the Pumpkin fest parade. Just a little mommy and kiddo time!

Mommy and Maddie!

Paige is home

2009-10-10T18:12:00.000-04:00

Thankfully Paige is home from the hospital. After 4 days of being there, she is now sleeping soundly. Her little hand is quite swollen from the IV but she is eating okay and acts pretty well. She has been really tired and sleeping most of the day. I can't wait to get her a bath when she's up and nice and comfy. We are going to try to do our best of not getting sick again but it's really hard. I work with children, Hal works in a hospital, Owen is in Kindergarten, etc. One of us is bound to bring something home at some time. My kids get vitamins every single day, they wash their hands, change their clothes often, take showers, etc. Just seems to still happen.
But, thankfully Paige seems to be doing better.

This is one of those times

2009-10-09T19:49:00.001-04:00

where if you don't want to hear me bitch, you might not want to read! Seriously, this could get nasty if I don't watch what I say!

I'm fed up! Seriously fed up. These last few weeks have literally been the weeks from hell! I can't even enjoy my poor baby because she is so sick all the time. And when she's not sick, it's just a matter of time before something else happens. I know first hand that there are many children that are much worse off than she is. I have seen some really SICK children! But, to us, this is devasting! It's really difficult to juggle starting a new job, working my current job, Hal in school, Owen in Kindergarten, Madison in general, spending every week at the hospital, this whole week being at the hospital, working to get subs for when I'm off, not feeling guilty about the time spent with Owen and Madison, and everything else involved in just living. But, then I also have the fact that I am starting to get really fed up with a specific group of individuals in my life. I have some really great family and friends. I have family and friends who would drop what ever they are doing to help us when they can. They are the type of people who know that I have always put my children first and that this is all really difficult for us. They also know that Hal and I never ask anyone for help when it comes to raising our children or caring for them. But, I find it very difficult to handle when we ask for help and all I get are excuses for why it's not possible. It's not like we ask all the time for help. It's not like we are trying to "inconvience" anyone. We did not chose to have a sick baby who requires a lot of our attention. We did not ask for any of this and it's not fair to our children to have to worry about who is caring for them. We should not have to sacrifice their health and well being when this is all happening. I will not just pawn my children off on just anyone. We ask for help and it seems that we just get excuses from people who say they care! Then, there are people who will take off work for us, spend time in hotels rooms for us with the kids, drive 2 hours to watch the kids. But, we can only ask this so many times before we feel like we are using these people. Then, there is this other group of people that all I can do is *sigh* when I think about their uninvolvement in the well being of our children. DO NOT PRETEND like you care and not even call to check up on Paige when she is really sick! She is currently STILL in the hospital and has been for 3 days! Hal is with her tonight as I am drained and really just need to sleep. I'll go back in the morning. Yet, there are some people who will talk to the entire town about Paige but yet not even care to check and see if she is okay. Which she is not! She is better, yes! Her fever is down and she is starting to recoop but this has been tramatic for her. Unless you have checked on Paige or read the blog, responded or just plain showed your caring interets, DO NOT pretend like you give a crap about my baby girl! I'm done with fake people. I'm done sharing my beautiful children with anyone who does not on a regular basis care about these children. I will not waste my time caring anymore about these people. People who truly know me, know that I would bend over backwards for anyone! Expecially when it comes to children. Yet, when we ask for help, it only comes from people who we would least expect. Thank you to these people, you know who you are! We love you!

Change of plans

2009-10-08T15:37:00.000-04:00

Paige did not have her ENT surgery today. The night before last, Paige spiked a 102 fever. I assumed ears as she has difficulty with fluid (or so they say without ever actually looking). So I had hal take her in yesterday to be examined. They said NOT her ears and they didn't know what was the cause. SO they admitted her because she's so young. I'm sorry but unless you have children, it's hard to ever say you can understand how awful it is to see a child go through what Paige has just undergone. I'm only home for an hour and then I'm rushing back in there but I wanted to take a minute to update everyone who is aware of the situation.

A complete list of what Paige has undergone and their results...

Nasal swab- yielded NO flu or other serious illness of this orgin
SPINAL TAP- Yes my poor baby had to have a spinal tap! It was horrible to her hear screaming and not being able to go in and comfort her. Spinal tap yeilded a viral result. So not menegitis (thank GOD!) or other bacterial infection of that kind.
CBC said that her white blood cells were a little low. They repeated today and it was the same. Dr is not too worried about it though.
Blood test resulted in a staf infection. They think it was contaminated.

Currently she is still running a fever so is taking tylenol every 4 hours. She is also getting really high levels of antibiotic in an IV every 6 hours.

She is eating "okay" and is in generally good spirit when she is medicated. She is sleeping a LOT but wants to be held all the time. Mommy has gotten NO sleep in the last 2 nights and probably won't again tonight.

It's pretty horrible seeing my 6 week old so sick. They said she could have gotten it from anywhere. It doesn't help that Owen and Madison are starting to get sick too but not half as bad as a 6 week old would. The dr said it's standard procedure for a young baby as she is.

So anyways, it's been a crappy 2 days and is only getting better. They inticipate that we MIGHT get to go home tomorrow afternoon. I personally am in no hurry except to get this awful looking IV outta my baby girl. She hates it. They also have her hook to a Respitatory monitor, APnea monitor, and O2 monitor to check her stats. It pretty much SUCKS!

Her surgery has been rescheduled to November 4th. I also HAVE a LIP SURGERY DATE of January 8th! I was pretty excited to get that news yesterday! Things are falling into place with that! I'm pretty happy to be 2 months away from being DONE with her NAM!

Thank you to all of you who have called and checked on Paige. Expecially THANK YOU to everyone who has volunteered to help with Owen and Madison. Although it doesn't seem to work out. This is a whole other blog but I'm basically sick and tired of people who claim to want to help but are conventantly unavailable anytime we ask for help. So those of you who have helped or those of you who have offered but it just hasn't worked out...THANK YOU! We appreciate each and everyone who is there for us when we ask!

Stressed beyond belief!!

2009-10-06T16:13:00.000-04:00

I never thought this day would come. I am officially so stressed out I can't handle it! I'm not usually a stressed person. I ALWAYS find a way for anything I need to do. It just happens. But, this time around, I'm at a loss. Paige has surgery on Thursday. The problem is, I have no idea what time on Thursday. The problem with this is that I will not know what time until tomorrow night, leaving me without knowledge what I'm doing with Madison and Owen. I have Maddie scheduled at daycare and she can be there at 6am if I really need her to be. But, I called and talked to the outpatient surgery and they said it can be as early as 6am. So now what??!!? Who is going to stay with the kids while we are down there. Taking them really isn't an option at this point because siblings are NOT allowed to be in the room at all. So why take them if that restricts one of us from being there with Paige. I know, I know. Someone is probably saying, why doesn't Hal stay with the kids while I go or vice versa. Think about it this way...

My poor 6 week old baby girl is having a mask to put her to sleep, then they insert an IV, possibly a breathing tube and then stick a scope down her throat. And it's not like they can just stick it up her nose and down her throat, her nose is all open to her mouth. So that is even more difficult and uncomfortable for Paige. Then, they will be placing tubes in her ears. Not a huge big deal on the tubes but still under meds for all of this. Then, waiting that scary time hoping that she wakes back up! What parent wants to not be there for all of that? I can't and won't miss that for Paige and for myself. Hal feels the same.

This is really hard as I normally do not trust many people with my children. I know find myself in a position that I'm going to have to trust more people. The problem is, it's hard to come by these days. Many people are too busy, too selfish or just plain too annoying to ask. Then, there are those people that would do anything in the world for us but we are too fearful to ask for their help. You know that simple "hey if you ever need anything" phrase. Well, I never can tell if they are serious or just saying it because they feel bad for us.

I know I'm quite frank on all of this but it's really bugging me to no end. I have NO idea what we are doing for this Thursday, not alone the days we are in the hospital when she is there for lip and palate surgery. And any other possible surgeries she might have.

This is all just really hard!

MIxed emotions

2009-10-05T20:51:00.000-04:00

We took Paige to her team cleft meeting today. Here's how it went...

Met with Matt (speech pathologist), Dr. Grunwaldt (plastic surgeon) first.
Dr. Grunwaldt talked to us about her surgery and how things would progress. She said it's a 4.5-5 hour surgery. That she will do her best to make Paige's scar look it's best but that really is up to Paige's body on how she heals. She also said that her cleft is pretty "typical" and that it isn't all that bad. The first thing that Matt said when he came in is "oh I guess we won't have to wait the full 6 months with Paige." That made us have a sigh of relief. And the first thing they asked was when Dr. V said she could probably have her surgery. I told them that she told us 3-4 months. Matt said he would go check and came back and said Paige will have her surgery at 4 months. SO JANUARY! We were hoping before Xmas but the first of Jan sounds good too!! We are looking foward to Jan now!!

Then, the ENT came in to talk to us about her stridor. They all agreed that she sounds so much better! We are still going ahead with the scope Thursday unfortantly. They are not sure about the tubes but are pretty sure they are going to just go ahead with it. They said that if she still does not pass her hearing, she will have a more intense test done. Hopefully she passes!! Mommy is going to start sign language with Paige soon. Good thing her mommy knows quite a bit! And what I don't know, I can find out. I took classes in college, and have friends who are deaf and have taught me a great deal. I could probably spend an entire week just signing and not have a problem. :) We are lucky in my training in this area as I was going to get my masters in deaf education but decided it was too difficult to find a job.

We then met with Regina (nurse practioner). She was impressed with Paige's weight gain! She is now 12 solid pounds! This is a huge milestone for cleft babies who tend to gain weight slowly. Paige has NO difficulties eating! She is in the high 95th percentile for height and weight! We also talked about increasing Paige's zantac to help with recent increase in spitting up.

We met with the social worker who talked to us in more detail about how we were feeling about things and also about health insurance information.

Then, Dr. V took us into her office to do the NAM adjustment and to add the nose shunt! We were excited for this because it really is helping Paige to be able to breath out of her left nostril. She has not been bothered AT ALL by it and could care less. Owen was a little freaked out when he first saw it because he thought it was a "hook" in his sisters nose. I explained that it helps to mold her nose and he was okay but was really freaked out at first.

So all in all, Paige is doing well with the NAM and everything is progressing. I was a little upset this visit though. When Matt and the other doctors were in the room, Matt began to talk about all these conditions my daughter has and he never explained them. So I have no idea what he's talking about. They did make note that Paige has a small chin. This is usually associated with some conditions related to a cleft. She also rolls her tongue so I was worried about Pierre Robin Sequence (
http://www.cleftline.org/publications/pierre_robin) which Paige has many of the symptoms for. But they didn't seem to think it was an issue at this point. This condition is rare and therefore I doubt Paige has it but it definitly is a concern if it is diagnosed. I doubt it though. Many of the things I have read says you do NOT have a cleft lip with this disorder. Matt said that no one has seen a signal of PRS so I'm hoping this is not the case.

Paige had to take her first trip to the Lab too. They had to take 4 vials of blood before her surgery on Thursday to check for blood disorders. I'm close to be anemic and Hal's sister has the carrier for Blood Pole platelet disorder. While I'm told Hal can't be a carrier, it's better safe than sorry in my opinion.

So right now I'm sitting here thinking about all the questions I had and forgot to ask! Like

How are we on the bone graph? Is it likely Paige will still need one or is the NAM working well enough we won't.

Can Paige go swimming with the tubes in her ears?

What happens if Paige's nose is molded and it's NOT January? Can we have the shunt removed or will it always remain?

Just a few questions I wish I had asked. I have Thursday off to go to her surgery but after that Hal will be on NAM duty alone. I will be at work for the next few appointments. I'm praying they have Paige's surgery early on Thursday also because she can NOT eat prior. Not quite sure what I'm going to do about Owen and Madison. Plan on taking them to daycare but boy is that an early day. I feel bad for those two! They love hanging out at daycare, truthfully I get yelled at for not letting them go. But it makes for such a long day. I feel bad because I feel like we are neglecting their needs. I know we are not and this doesn't happen often but I love being able to have Hal take the kids to school and not have them there at 6am.

So as you can tell, I think I have rambled enough. :)

Paige's progress with the NAM

2009-10-04T21:19:00.000-04:00

I really think that the NAM is doing wonderful things for Paige. I'm going to try to add new pictures to show her progress. Please comment and let me know what you think...

At Birth, Lip... Click on the pictures to make them larger if you have a difficult time seeing the difference.

3 weeks old cleft palate and lip

6 weeks old! AMAZING cleft lip and palate!

6 weeks old...Lip.

Tomorrow is a big day!

2009-10-04T16:54:00.000-04:00

We have our team meeting with the cleft team in Pittsburgh tomorrow! We are pretty excited because rumor has it, you can pick your surgery date this day. Well, we don't exactly get to pick it, more like they tell us. I'm really excited though. I can't wait to find out! I'll be pretty bummed if they don't tell us but I'm pretty sure they will. Paige is doing really well. She is a happy, smiley little girl. We are impressed with her each and every day!

Thank you God

2009-10-03T09:07:00.000-04:00

Thank you God for knowing what I can handle! Thank you for not telling me prior to Paige's birth!

I have recently met a very sweet woman. She just found out this past week that she is having a BEAUTIFUL baby boy who has a cleft lip/palate. I have been in contact with her frequently and have seen the beautiful pictures of her ultrasound. He really is just adorable!

But as I talk with her, I realize one huge important factor in this whole equation! I'm incredibly thankful that I did NOT know about Paige's cleft prior to birth! It would have helped to know that she was a girl. LOL But, as for the cleft, I think I would have been a wreck the entire pregnancy. At least I got to enjoy being pregnant, possibly for the last time. God knew that I would stress out and be overwhelmed. Possibily he had a master plan, allow me to finish school unstressed and give us a great summer prior to Owen going to Kindergarten. Perhaps that's why God waited so long for her to be born. I never thought I would make it to almost my due date (she was born 3 days short of my due date). I never thought I would have made it that long. All of those contractions that I was having all summer long that were incredibly painful. Maybe God kept saying "she's not ready!" I am thankful that He gave me Paige. I just adore my baby girl! I am so thankful He gave me my beautiful Madison and Owen. And I'm incedibly thankful that He knew what I could and could not handle. Thank you God!

Big strong baby girl!

2009-09-27T13:15:00.001-04:00

Paige is so much better!

2009-09-26T10:22:00.000-04:00

The Zantac and thickening her formula/breastmilk is really helping. She is breathing so much better and has been a lot easier of a baby. She's not cranky and sleeping really well again. She has just been smiling away the last couple of days. She's not completely back to eating what she was before but that's okay seeing how it's thicker and makes her fuller.

We do not have a NAM adjustment until the 5th of October so nothing will be really updated until then with the doctors. We should get a surgery date that day though! Very exciting!

Here's a couple of pics for your enjoyment...

Going back to work

2009-09-24T08:06:00.000-04:00

This really sucks! I go today to get released to go back to work TOMORROW! I'm not to keen on this. I stayed home with Owen till he was 9 months old and Madison was almost 4 months. So to be going back to work when my baby is 5 WEEKS old is basically killing me. The ONLY reason I know I can do it is because she will be home with Hal all day. Most days I'm home by 1:00 so that helps too. He keeps telling me it will be good for me to go to work but I really don't know how good it can be to already be stressed out and then go to work and deal with 18 more kids! I'm only going back because #1 We need me to finanically. Hal is still off work and we are not going to make it much longer with me being off. Even then it's a struggle with all these newly accured expenses. #2. By going back earlier, I can use more time to take off for Paige's appts and surgeries. I'm not taking off for NAM adjustments as those are literally a 15 minute appt but I will DEFINITLY be there for any other appts.

So this is my last day home. :( I'm going to go hang out with Owen at school for a little while, head to Dr. F (OBGYN) and then hang out with the kids the rest of the night. And then relax enjoying Grey's Anatomy tonight, that's if I don't fall asleep first. LOL

As for Paige, she slept REALLY great last night. 6 hours, woke up for 45 minutes and then slept another 4.5 hours. So I think the cereal in her bottle is helping. She barely spit up at all when I fed her.

Hope everyone is well. I am looking forward to going back to the land of the adults but it's painful to be leaving my babies.

Pagie's upcoming appts

2009-09-23T17:57:00.000-04:00

October 5th- Teem meeting and NAM adjustment. Meet with the entire cleft team. Hopefully receiving the date of her first surgery! YEA!

October 8th- ENT surgery for endoscopy and ear tubes inserted.

October 15th- NAM adjustment

October 22nd- NAM adjustment

October 28th- NAM adjustment

November 3rd- Pediatric appt with 2 month shots

November 4th- NAM adjustment

Scary couple of days!

2009-09-23T17:31:00.000-04:00

I'm going to try to make a long story a little shorter than I would normally tell it. LOL

Paige was born with Laryngo malachia. Basically it is a "floppy airway." It is also known as stridor. It causes Paige to be very squeeky when she is breathing and causes her to sound like she is breathing very hard because it is a tightening of the airways. I basically call it "baby asthma" but it doesn't go away throughout the day as asthma would. It is always with her and she can be heard easily without a stethoscope. When she is sleeping, she is peaceful and you can not hear her breathing like this. Paige does sleep with her crib at a 30 degree angle so that helps her to not breath so loud and keeps the air way open.

Well, yesterday she was not acting right. She is usually really easy to take care of but for the past couple of days she was cranky and not wanting to eat. We just started her on Zantac last week for reflux and so we assumed that it was not her reflux and was simply that she might be getting a cold. So I watched her all day until she was sleeping in her bouncer and just couldn't sleep. She was really restless and kept waking up crying. She never does this. I figured she wanted to eat but she refused most of the day to eat more than 1 1/2-2 ounces of formula/breastmilk. This started to worry me. I asked Hal to come and take a look at her breathing as she was clearly breathing REALLY hard when she was trying to sleep. Which I mentioned, she never does. He looked at her, got out his stethoscope (it's good to have that handy) and told me to call the doctor, she needed to be seen soon. I knew what this meant so I called her ped and asked if I should bring her in or take her to the ER. With all her medical conditions, I would rather a doctor see her that is familiar with her or our family, so I opted to take her to her Ped in Meadville.

So I headed in with just Paige and had her seen. The doctor listen to her and told me that he believed she aspirated. OMG! I was trying not to flip out but just to give you an idea of this..it meant...hospitalization, spinal tap, IV antibiotics, chest x rays, etc. Not a good thing at all. Oh and plus, if you don't get it out in time, she could die. So I was doing my best to hold it together as we always know that she can easily aspirate with her condition. So they sent me to the XRAY dept for chest x rays. At this point, Hal had to bring Maddie to the hospital with me because he HAD to go to clinical rotations. He is not allowed to miss and he might already miss a day for her surgery. So here I am, a wreck already, with a cranky baby and crazy three year old. I held it together and just did what I had to do sitting and waiting for the results.

Results came about 2 hours later. It was such a long and tiresome wait with Maddie all over the place. It's hard for a 3 year old to sit still that long when there is nothing to do. The good news was...she DID NOT aspirate. However, the doctor believe it was an obstruction in her throat or larynx. As I have mentioned before, I instantly thought "cleft larynx." He then told me that he wanted to show me her x rays. This scared me. Her lungs were completely clear but because she is having such difficulty breathing, her lungs are actually starting to grow in a "pear shape." She is using the muscles on the sides of her rib cage to breath, causing them to grow out of shape. Is it reversable, apparantly YES but we have to wait and see. The doctor recommended that we take her to Children's to be evaluated by her ENT today. We already had a NAM adjustment scheduled so I called Matt early this morning and set up the ENT appt.

We got to Children's after dropping Maddie off at daycare and Owen at school. Regina (nurse practioner) listened to Paige and told us she is having a lot of problems breathing and that they were not going to be a NAM adjustment this week. We honestly were a little disappointed as she was suppose to get her nose shunt this week. :( But we agreed it might be a better idea not to do it until we had more answers.

ENT appt: Dr. Alper saw Paige and told us that she didn't sound much worse to him but that he thinks that her reflux is really bad. Her Zantac hasn't really started to work. What is happening is that the stomach content is rising in her throat, irrating it, and then causing her throat to swell more. On top of the Laryngo malachia, she is having some trouble. But he wasn't too worried about it as long as she didn't start to turn blue. He said we need to thicken her feedings and see if that helps her from having the reflux. We are then going to be doing the scope on October 8th with her tubes as planned.

So plan is to thicken feedings, continue Zantac, keep scope operation scheduled with tubes, and watch for increased problems. If it gets worse again, they will take us in to get the scope done earlier. Hoping that is not the case and we can just make it till the scheduled date.

Thanks for all who took the time to pray for Paige today. It was very frightening to watch my one month old having extremely hard time breathing. She is sleeping sound now and doing much better. Pray it continues.

Please Pray for Paige

2009-09-22T22:57:00.001-04:00

I really don't want to go into details right now as I'm pretty torn up but please pray for Paige. She had an unexpected visit to the hospital today and it yielded some unexpected results. Poor Paige is pretty sick right now. Please pray for her. We are off to Pittsburgh tomorrow to get more results!

New Pictures to Share

2009-09-21T21:46:00.001-04:00

Learning to play with her Floor mat! Good stuff!

Owen taking care of Paige

Just too sweet!

Sleeping Paige!

Paige's first smile. Well kinda, she just "finished" smiling and Mommy wasn't fast enough!

Sleeping in her seat!

Daddy, Paige and Madison!

See how cuddly she is! Sleeping on Mommy for 2 hours!

Madison and her Prince Owen

Do you ever wonder if God is just challenging you?

2009-09-21T21:23:00.000-04:00

I almost think that God seriously did give Paige to me on purpose. I love my daughter! I already feel a really strong bond with this little being! She is a sweet baby and so cuddly. Maddie was never cuddly. She wanted to be put down and was very independent from the start. Owen was OVER cuddly because he was so colicky that it was tiresome to hold him. Paige, she is just sweet. She curls her little legs up and lays her hands out on your and you just melt at her sweetness. But these days I almost wonder if I'm being challlenge Paige in my life. I have never thought of raising a baby as difficult. Seriously! I haven't. I find raising an infant far easier than raising a toddler or older. I don't always mind getting up in the night, I don't mind a screaming baby, or changing diapers, stopping to feed in the middle of the grocery story. I have never minded any of that. I always stimulate my babies with enough tummy time, music, interactions, mouth exercises, etc. I know how to take care of a baby, it's instinct for me. But, Paige...dear Paige. She is my challenge. Just when I thought it was easy to have a newborn, she brings me more challenges.

1. Paigey pooh has reflux! Owen had it too but it's a little different when you have a baby with a NAM. Any time she spits up, out comes the NAM to get washed. Plus the fact that her poor little nose is caved in so when she spits up, it almost always comes out her nose. Then she gets really mad because she can't breathe any better with breastmilk or formula in the inside of her nose. So here come the qtips or wash clothes. Also, she will get Zantax twice a day until she's much older.

2. Paige has thrush. None of my kids have had it but apparantly she got it. I can only assume it's because of all the germs from her NAM and the fact that her mouth gets played with by others more than any other kid. So she has meds 4 times a day and it just doesn't seem to want to go away. I'm even taking meds for it in the hopes that I don't have it to give to her through breastfeeding.

3. Cradle cap. Paige has cradle cap. None of my kids had this either but apparantly Paige does. It's not too bad at all and I just have been using a brush to get it out of her hair and applying lotion to the brush afterward and brushing that into her scalp. But, it's just another thing that I have yet to experience that Paige has brought to the table. Of course, none of this is Paige's fault and I don't mind it but it's just one more thing that I am learning!

I don't mind learning all these things. It's a challenge to me really. Everyone who truly knows me, knows that I'm pretty ambusious. When I set my mind to something, I always do it. Case in point, finishing my masters degree when working full time, Hal going to school full time, raising two children, etc. It was difficult and now it's complete! Yeah me! So having Paige actually is no surprise to me. It's just shows that I needed another challenge or purpose in life.

In recent weeks, I have been thinking about my purpose in life. I have gone to school for 6 years to be a teacher. I have a masters degree in Special Education, undergrad degree in Elementary Education and a certificate in Behavioral Specialist. And yet, some days, I find that I don't want to use any of it. I almost feel like I have another calling in life. I haven't determined yet what it is but I almost think God gave me Paige so I would figure it out. She is my angel baby! Truly my angel! I have also been thinking of a way that I can use my talents to put on a fund raiser for cleft affected babies. There are so many children that are affected with a cleft and can not afford to have the surgeries. Overseas, it costs 250 dollars for ONE CHILD to have a surgery. Doctors donate their time and money to perform these surgeries. The 250 dollars goes towards supplies and recovery. I would LOVE to organize a fund raiser to help these children! More will come soon with all of this as I am still sorting out my ideas! I would love to raise enough for 4 children to have the surgery (1000 dollars). If you have any ideas, feel free to leave me a comment!

On a happier note...Paigey pooh had her first smile. Hal told me she smiled the other day at him and I told him it was gas. :) Then she did it with me and I assumed the same thing. Until yesterday when I was playing with her chin and making sounds and she was just smiling away. I tried to capture a picture with no luck! :) But she is getting so big! She lights up our lives!

What the heck is wrong with people????!!!

2009-09-17T13:56:00.000-04:00

http://www2.nbc4i.com/cmh/news/crime/article/woman_allegedly_spanks_someone_elses_toddler_in_store/23240/

Have you seen this? A woman spanked another woman's child in a Salvation Army. They did not know each other and nor did she have permission to spank the child! Another man a few weeks ago was arrested for spanking a child in the face inside a Walmart. He did not know the child but apparantly told the mother "you either shut him up, or I will!"

What the hell is wrong with people? I have a BIG problem with this. Why do people think they have ANY right to touch another person's child. That right is only given to the parents! God holds parents accountable for the children, not society! Seriously, there are so many other ways to deal with any child, that you should NEVER EVER IN A MILLION YEARS even threaten to spank someone else's child! In all of my years working with kids, I have thought "if only that child just got one good spanking on their little butt!" Or "that parent really should spank him one!" But, never have I ever threatened it or done it. I have never had to. Usually kids respond really good to me and I just have to give them that look and they stop (for a while anyways). It bugs me when people say that they spank someone else's child. (Don't worry, I won't name names. LOL) My answer is "FIND ANOTHER WAY!" Leave the parenting up to the parents! Enough said.

Don't take for granted

2009-09-16T20:57:00.000-04:00

I see these mothers who have babies that are small like my Paige and I think of all the things that I will not get to enjoy.

Don't take for granted a pacifier! I have never used one with my kids. They never really liked it. Owen was too colicky and Maddie loved (loves!) her thumb. So this time around, I had planned to use one in the hopes of not having another thumb sucker. But unfortantly, Paige can not hold one in her mouth! We have to hold it for her.

Smiling..Paige's first smiles will be with her NAM in her mouth. :( I won't have that big gummy smile like the other two kids. It will be through all the hardware my poor baby has to wear!

Holding her own bottle...Paige has NO sucking reflexes. How will she hold her own bottle and actually get anything outta it?

Did I mention I have to wean Paige off the bottle before her palate surgery. So I can't even enjoy her being a baby for very long.

No Breastfeeding...Don't need to say much more for that...(read below)

Bottles. Did I mention that Paige's bottles are 25 dollars a piece. Thankfully, the cleft center will provide them for us but that means I have to ask. I hate asking.

Going swimming..Paige will have tubes soon. Can't do all that with tubes and not be worried about it.

Eating corn on the cob. This is one Hal thought of, she won't have the teeth (maybe) for eating corn on the cob. She might but we won't know.

Getting her teeth. While most moms are excited for their baby get their first teeth. I'm scared to death. What if they come in wrong? What if they don't come in at all?

All these simple things that moms just take for granted, Paige has to adapt or go without. I almost feel like I got screwed! And poor Paige is just along for the ride.

NAM appt went well!

2009-09-16T16:47:00.000-04:00

Well I can say it went Well but boy oh boy does Paige NOT like those appts. She has to wait to eat when we get there because they want to see her eat before we go. She doesn't like to wait so she usually screams and cries the entire time. Not so fun. For now on, she's eating before we go. LOL

Dr. V is very impressed with her. She is getting her nose shunt NEXT WEEK! Yes, it's this little addition to her NAM that sits in her nose. It's connected to it by wire. It will form her nose so she will have a more natural look when it comes surgery time. It's really amazing stuff and means less surgery for the future!! We always like to hear that! So at 4 weeks old, she will be getting that! She would have had it today and that was the plan except we had some other changes along the way.

Paige has reflux. We knew this but now it's starting to really affect her eating. She's cranky and doesn't want to eat too much. It's really starting to bother her throat and tummy. So she is now on zantax. Hopefully that doesn't taste too nasty as she hasn't gotten her first dose yet till bedtime. Not looking forward to that. They also said that it might be the reason behind her noisy squeeking! Which seems to NOT be getting any better and almost worse. So here's the plan...

Also, Paige is getting tubes in her ears. We knew this was going to happen a while back but since she failed her hearing twice, she will have it done sooner than her lip surgery.

Therefore, on October 5th, we meet with the entire team including the plastic surgeon to discuss all matters. HOPING and PRAYING we get a surgery date or tentative one at least!

Then on October 8th, Poor Paige gets a small scope down her throat to look at her voice box. They wonder if it's not cleft too. Never heard of this and plan to research it more but they are hoping it's just from the reflux that she is so squeeky and sounds like she's gasping for air.

So not so fun for poor Paige but she is tolerating everything so well! And did I mention she's 10 pounds already. LOL My kids definitly don't have a problem gaining weight! :-)

Scheduling is a BITCH!

2009-09-15T17:42:00.001-04:00

Seriously getting already tired of working Paige's appts around my work, Hal's clinical rotations, Owen getting home for the bus, etc. I had to reschedule an appt 3 times now because I just couldn't get it right and now I have to wait 3 weeks for a VERY important appt. I already hate this. Oh and did I mention that now we have to go to Pittsburgh 3 times in ONE week! Seriously nuts if you ask me! I don't know why we can't just do it all in one day, it's all in the same darn office. I hope to get to cancel the one if we don't need it but I'm thinking one way or another Paige will probably end up getting her tubes that day so we won't be able to cancel it. They are really trying to work with us but it doesn't matter to them that we drive 215 miles to go down there. *Sigh* I can't wait till surgery time when we don't have to go down anymore until Palate surgery time!

Rant about other people reading my BLOG

2009-09-13T22:02:00.001-04:00

You all need to comment. LOL :-) I'm obsessed now with blogging so It's really nice to read the comments from time to time! Make my site more known so it can be of help to other parents if need be. COMMENT! :-)

Rant about Breastfeeding!

2009-09-13T21:45:00.000-04:00

You know, I know first hand that having a baby can be stressful! This time around, I feel that it is a tad bit more. I love Paige, she is an easy baby. She is going through all the stages that my other two have gone through. I just feel like there is so much more that we have to worry about.

#1 CONCERN...Breastfeeding! I HATE that I can't actually breastfeed her. We tried, God knows her and I tried! I was aimed at beating the odds but it just wasn't going to happen. There is no way she can hold a pacifer in her mouth, not alone have enough suction to breastfeed correctly. The last time I offered it, she screamed bloody murder. That is when I just decided it was either keep trying and cry every time or just do what I can to keep her on breastmilk as long as possible. This means..PUMPING, PUMPING, PUMPING! I HATE pumping! I think this is why I NEVER had a storage for the other two and I don't yet with her. I plan to get ahead of things soon! Actually I'm trying my damnest to get ahead of her feedings. Right now she is having maybe 1-2 bottle of formula a day. Which I think is pretty good considering I'm pumping in the car, hand pumping, etc. It's so freaking time consuming! I always loved how bfing was so easy. You just plop a boob in their mouth and they eat. No warming bottles, no clean, nothing to carry with you when you go out! Plus, all those nutritional benefits, it's just perfect. Now, I have to pump, clean breastpump stuff, store it in the fridge, make sure it's not too old, make sure I have a good 4-5 ounces in each bottle, and then take another 20 minutes to feed it to her. So total feeding time ends up being like 40 minutes. Then count the fact that you are suppose to pump 8-12 times a day. Yeah right, did I mention I have 2 other kids that are sick of me being "busy." It's a LOT! But, you know what...I pride myself on being a strong, confident, and strong willed mother..so I'll keep doing it as long as I can! So now I'm going to be drinking my 65 ounces of water a day, eating NASTY oatmeal, taking my Fenugreek and pumping like a mad woman! Hope it pays off till she's 9 months like the other two were when they self weaned!

Paige's photos!

2009-09-13T15:49:00.001-04:00

Can't forget my big girl! She is now 3 weeks old! Here are her most recent pics!

Owen and Madison

2009-09-13T15:40:00.000-04:00

Photo shoot with Owen and Madison. Let me tell you, they are not the easiest kids to photograph! They never sit still and they have the worst cheesy smiles. It's really hard to capture a genuine smile from these two!!

The joys of a cleft baby...

2009-09-11T20:00:00.000-04:00

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!

2009-09-11T14:26:00.000-04:00

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.

Paige's 3rd Cleft Team Appt

2009-09-09T15:49:00.000-04:00

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!

My thoughts

2009-09-05T12:19:00.000-04:00

Warning: Read at your own risk. LOL

Behold, Children are a heritage from the Lord,
the fruit of the womb is a reward.
Like arrows in the hand of a warrior,
So are the children of one's youth.
Happy is the man who has his quiver full of them;
They shall not be ashamed,
But shall speak with their enemies in the gate.

Psalm 127:3-5

As I am adapting to life with three children, I am reminded that God only gives us what we can handle. These past two weeks have been precious. Even though we have been plagued with many hospital trips and phone calls, I have really become attached to my growing family. When I had Madison, I was advised by many people that "a boy and a girl is good enough." But, in my heart, I knew there were more chidren to come. Now that I have said to many people, "I'm DONE being pregnant. Never again let me do this," I am feeling as though I may again go back on my word. Children are a blessing.

When I was growing up, I never wanted to be a wife. Truth! I never wanted or longed for a perfect wedding or perfect dress. I never had those dreams of this big fancy wedding and all that goes with it. I longed to be a mother! I wanted children and had no intentions of waiting to have them until I was older. I had planned on adopting a child with a hearing disability. I had already started to research it. Then, I met Hal. We have the same feelings on parenting. We do not believe anyone else has the right to parent our children as we feel we do an adequate job on our own. God holds us responsible for our children! It just fit perfect. I love my husband and we have had our ups and downs as anyone else. But, I really wouldn't change our lives (okay, I lied I would change a few things but it usually doesn't have to do with our marriage as much as outside factors. LOL)

So now that I look at my crazy kids, I wonder what life has in store for us!?!! What will they become when they get older? Will we have more children? Will our children have to roll the dice with genetics in the future? None the less, I can not dwell on these thoughts. Life is too short to wonder "what if" all the time. I will do as I always do, enjoy my children and make the best out of a situation that only God can control.

What is a NAM?

2009-09-05T11:46:00.000-04:00

People have asked what exactly does Paige's NAM do...here's a short answer.

Basically the NAM (nasoalveolar molding) is a retainer like you would have when you have braces. Fortantly for Hal and I, neither of us have had to have one so we do not have first hand experience with this. But, the NAM works to bring Paige's gum line together to make it easier during surgery to reconnect. It also allows the palate to close up easier as the tissue is still very soft. It helps to expand the tissue to make it easier on the surgeon during the surgery. If it does it's job, Paige MAY NOT need a bone graph when she is 8 years old to close up the small hole in her gum line on the top. This is why she has it so young. When she has her lip surgery, BYE BYE to the NAM!!

Here is a great website if you would like to read more about the NAM! http://cleftsmiles.org/Home.html

Here's a picture of Paige's NAM!

Owen started Kindergarten!

2009-09-05T11:41:00.000-04:00

Finally got the pictures out of the car! Had the camera in there since Kindergarten day on Wednesday, Sept 2nd 2009! He's such a big guy now!

Paige without her NAM!

2009-09-05T11:38:00.000-04:00

This is Paige this morning without her NAM. Check out her poor little baby acne! Gotta love when Mamma's hormones come back out in the form of little icky pimples! All of my kids have had it at this stage! Should go away in a few days!

Crawford County Fair with Mommy and Daddy!

2009-09-05T11:23:00.000-04:00

We love taking the kids to the fair every year. Maddie loves the horses! We let the kids play a few games and ride the Merry-Go-Round. It was fun until it started to rain! :-) Here are a few pictures from the day...

Paige's first fair!

Cleft Palate and Lip Awareness Month

2009-09-03T10:15:00.000-04:00

As I'm learning more and more about this #1 Birth Defect in children, I will share with you. Just thought I would let you all know that this month is Awareness for Cleft Palate and Cleft Lip. Here are a few facts for you to learn to be more knowledgeable on this topic.

Cleft lip/ Palate is the #1 Birth Defect in Children. 1 in 600 children are born with it!

CLP (cleft lip/palate) is both hereditary and caused by environmental factors. You do NOT Have to have someone in your family who has it and just because you do, doesn't mean you are going to have a child with it. Case in fact...I have 2 beautiful children prior to Paige who are not cleft affected (nca). There is a 4-5% chance that ANYONE be born with it.

A "HARE LIP" is an offensive term for CLP. DO NOT USE THIS TERM as it really offends MANY People. If you are using it after reading this, shame on you!

There are many types of CLP. Paige has an unilateral cleft lip and palate. There is also a bilateral cleft lip and palate. This affects both sides of the nose. Paige's is only on the one side.

More boys are affected with cleft palate than girls.

Most children with CLP have their lip surgery from 3-6 months of age. Their palate surgery can take place anytime between 9 and 18 months.

Not all babies who have CLP have speech problems. 99.9% do not have any hearing loss.

CLP develops when the baby is around 6 weeks gestation. This is about the time when most moms find out they are actually pregnant. I knew I was pregnant with Paige at about 3 1/2 weeks gestation because I chart my cycles and can tell easily that I'm pregnant.

70% of babies with cleft lip also have cleft palate!

There's just a few of the facts that I have learned. There are so many more as I learn more and more about this birth defect! Please feel free to share this knowledge!