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Tuesday, December 21, 2010

Pics!

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





Monday, November 22, 2010

Taking time

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!

Tuesday, November 2, 2010

Update with loads of updates!

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!

Wednesday, August 11, 2010

So many updates!!

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!

Thursday, July 8, 2010

One week left

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.

Thursday, July 1, 2010

Pre-op appointment

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.

Thursday, June 17, 2010

Joys of Life

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!

Friday, June 11, 2010

Go baby Go!

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!??!!

Friday, June 4, 2010

Exciting stuff!

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!

Monday, May 31, 2010

What's going on with us?

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. :)

Thursday, May 20, 2010

Cute Randoms









Maddie turned 4!

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

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! :)










Sunday, May 2, 2010

Change in Plans

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!

Wednesday, April 21, 2010

March of Dimes

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!


Monday, April 5, 2010

Great news!

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!

Sunday, March 28, 2010

Was thinking...

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


:)

Update Sunday!

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...
video

Monday, March 22, 2010

Memory Monday


Sunday, March 14, 2010

Paige's First Signs

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

Wednesday, March 10, 2010

Just plain bad news

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

Sunday, March 7, 2010

Recent News

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. :)








Wednesday, February 10, 2010

Owen is now 6 years old!

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

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





Monday, February 8, 2010

Just food for thought...

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?!

Tuesday, February 2, 2010

PLEASE HELP!

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

Monday, January 25, 2010

Just an update

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!

Friday, January 22, 2010

First Taste of Bananas!!

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

January 17th









January 20th