Look Who's 2! Payten We Love You! Happy Birthday!

WOW! Payten is 2! I can not believe it has been 2 yrs already! Time really does fly! It has been an AMAZING 2 yrs. One of many challenges, blessings, sorrow, learning, etc. Payten has truly changed our lives, both for the good and the bad and that's okay! She has taught us so many things, things that we would have not imagined we could learn or understand. She has taught us how to truly love,  live and live it to the best of our ability, laugh, and enjoy the little things life has to offer! She has taught us what it means to be strong, how to defy odds, smile through adversity and not sweat the small stuff, etc. Payten has shown us what Heaven is like. She is a piece of Heaven in our home that we cherish each and everyday! We are so blessed and grateful to have Payten!  She is EXTRAORDINARY!  Everyday that we are with her, we become better! Thank you Payten for your spirit! Thank you for choosing to be a part of our Family! Thank you for everything you do!

You have made me a better Mother and I think you are PERFECT! You are my Van go Painting and I would not have you any other way! I pray that we may have many more years to come. I do not know what I would do without you, you have changed my life and I can't see it any other way than with you in it! I LOVE you Payten!

Above I posted birthday picture's and video's of Payten eating her Cake! Well, playing in it! I wouldn't say she ate it, she has not eaten anything by mouth since a month of age! But that didn't stop her from digging in! We wanted to do something fun to celebrate her Birthday, but  Payten has not been feeling well the past few days. She is having issues of some kind. We do not know if she has another sinus infection or if it is more Neuro related, or what, all we know is that she is not herself and is struggling breathing and so on. So we decided to hold off on doing anything active until Halloween weekend, that is if she is doing better. (we are crossing our fingers that she is better by then!)

 However, we did go to dinner for her and Joseph's Birthday! (his b-day was yesterday, for those of you who did not know!) We went to Red Robin! It was delicious and fun. After dinner, we went to my parents home and let Payten open her presents from her Aunt Laura, Uncle Mike, Grandma and Grandpa. Then we sang to her and let her dig into her yummy cake! It was fun! I think she really enjoyed herself and had an AWESOME Birthday! Even if we did not do much to celebrate! Sometimes simpler is better. Anyways I just wanted to post the pictures so that you could all see how much fun she had on her b-day with her Cake! Enjoy! I will keep you all posted on what we find out about Payten's health in the next few days! Good night!

The Gift of A HUG!

This morning I am feeling very THANKFUL for the little Miracles and gifts in my life. Just a little bit ago, I went to pick Payten up to give her CPT and breathing treatments (a daily ritual in our home!) And she gave me the GREATEST Gift a Mom yearns for! The gift of a HUG! Yes, she gave me her FIRST official HUG! She wrapped her arms around my neck and squeezed as tight as she could and then rubbed her whole face into my cheek, like she was giving me kisses, Yes KISSES! And then she looked up at me and just SMILED one of the BIGGEST Smiles I have ever seen her give! Words can not express what that feels like. All I could do after I got her situated was sit down and cry and thank my Heavenly Father for the blessings and gifts he sends me daily! This may seem like a very  small thing, because it is something that is taken for granted each and everyday. A Hug is something most Mothers receive on a daily basis,  but when you wait so long to receive one you savor it when it does come! I love my little treasure and I KNOW God listens and knows what you need. I needed that HUG today! I needed to know that she loved me! I needed that MIRACLE! Thank you Payten for giving me that little Miracle! Thank you for being that TREASURE you are!  I LOVE you! You are so BEAUTIFUL, oh yes you are! You are so beautiful, you are my shining star! You are so beautiful, You are! Payten YOUR MY STAR!!!! Yes, you  may think it was a  coincidence, but it was not one to me, rather it was a treasured MIRACLE!

Motherhood: One of the Hardest things you will ever do and yet the MOST rewarding!

Stress and worry seem to be an unavoidable thing in my life these days. I feel like I try to hide from it, take a break from it, run from it, etc. but it has a way of still finding me no matter what I do. I know ALL mothers experience this. I know motherhood is one of the hardest things a woman will ever do. We do so much as mothers. The saying is true that motherhood is the hardest work a woman will ever perform and the most rewarding. But a mother of a special needs child has not only all the work of a typical mother and the stresses that come with that, but also all the work, care, concern and stress that comes with a child with complications/special needs.

Yes, children get sick, children go to the hospital, they break bones, etc. But it is short lived. They eventually get better and things seem to go back to normal. That is not the case for a child with special needs, they do not get better. You go to the hospital and spend days, weeks, sometimes even months and still go home doing EVERYTHING that was done there and more. You rarely get those long stretches of stress/worry free moments, you get them, they do come, but most of the time they are short lived.

We are constantly concerned about what the future holds. Yes, we try not to dwell on it and yes, we try to live day by day and moment by moment, enjoying all the little things their lives have to offer because you realize those are the most precious things of all. But even doing/trying this, it still weighs on your shoulders. All the worry, stress, decisions, questions, and heartache. You start to feel like you are getting a grip/handle on life and that you have a  good routine down;  you truly feel life is somewhat NORMAL and then BAM something new hits you and you are faced with more hard decisions, worry, heartache and stress.

You start to wonder when will it end? When will the day come that you get a break from all of this? When will the weight be lifted from your shoulders. What does the future hold for this child? Will I ever feel in control? Will answers come? And it hits you, that day might not EVER come and you soon realize that you have to learn the ultimate struggle/goal, you have to learn to let your hopes for that child out weigh your fears.

John Wayne once said, Courage is being Scared to death and saddling up anyways. This week I have been struggling with ALL these emotions. We have had a lot thrown at us these past few months and more things these past few weeks, that have options to be weighed, and tough decisions/choices to think about and make. It has taken me two years to feel comfortable with my new life, to feel  like I have everything down and  that I have a little control over what is happening and that finally things are settling down for my family. Then we get more things thrown at us, more decisions that need to be made, more worry, heartache and stress. And it is not because we have new knowledge or found something new, but rather the decisions, obligations and worry that follow.

What is the right choice? Will we have regrets in the choices we make? What is best for our child? Are we being selfish? How will this affect our child? ETC., You don't ever want to regret anything you do and so you want to make the best choice you can so that you do not look back and wish you would have done it different. You never want to limit your child, but rather you always want to see the potential that child has. Every child has gifts they just unwrap them at different times.

So that is why, I have decided we will go forth with testing on Payten's ears/hearing. (Read pervious post about this and why we are wanting it, if you need/want more info. email me, IM me, etc and I will let you know further regarding this.) I am hoping that the decision I have made will be the right one and I am not going to care whether or not treatment will help or rather allow that fear to cloud my judgement. I believe knowledge is power and I want to know as much as I can about my child so I can be prepared as best I can for what may come in the future. I will try treatments and anything else that I can for her and if they don't work, then they don't work, but at least I tried and will not have regrets later.

There are two ways I can meet my difficulties, I can try to change them or I can change how I meet/handle them. Christopher Reeves said, Anyone can give up, it is the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart is true strength. I am trying to hold it together. I am trying to fulfill my gift of Motherhood to the best of my ability and take it SERIOUSLY. I know it is not easy and I know that the Lord never said it would be easy, but rather that it would be worth it. I know God does not give me anything I can not handle, but sometimes I wish he would not have so much faith/trust in me.

To all you Mothers out there, keep up the GREAT work you are doing, know that you are amazing and strong. Your children love you, they honor and respect you and most of all they need you. But, to all you Mothers out there with special ones, know that you are the strongest of the strongest and you are not alone. The work you do will not go unnoticed or unrewarded. You are the MIRACLE in that little life, they are not strong enough to endure it alone, but they are with you by their side.

Never give up hope, always search for the light and happiness, because it is there, even if it seems relentless and hopeless, the light is there. Albert Einstein said, There are only two ways to live your life, one is as though nothing is a miracle, the other is as though EVERYTHING is a Miracle. Let's live the miracle. Even though we know that stress will happen and worry will always be there, lets look for the miracles, let's enjoy the little moments we have been given with these special ones, because when it is all said and done those moments are going to be what we will have to hold on to and cherish.

I love being a Mom and I have the best of both worlds and would not change it for the life of me. Perseverance is not one long race, but rather many short races and I am still learning how to take them one step at a time. Thank you to all my dear friends who help me when I am down and troubled. This week I needed you and you were there. I could not have made the decisions I made with out the support of my family and friends to those of you, you know who you are, I love you and appreciate you! I will keep you posted on what happens with the testing and what we find out and whether or not treatment will be available for Payten. Good night and God Bless!

What's going on with Payten??? Here are some answers!!!!!!

So last week, I informed all of you that Payten was still having health issues and that the Doctor was not sure what it was. So.....the winner is.......drum roll please.......She has an infection in her TRACH!!!!!! The X-rays Dr. Panesar sent us for came back clear and therefore did not need to have a Bronchoscopy done on Payten to flush sinuses and lungs out. Yay! That is good news, but it is sad news that she is sick with a bacterial infection. At least it is bacterial and NOT viral. We can treat it and hope that it clears quickly, so she is on MORE antibiotics and steroids to help her get better and stay out of the hospital.

We saw Dr. Mancuso on Thursday and we discussed EVERYTHING Payten has been experiencing since he saw her in June. That Poor Man, what he has to deal with from me!!!! At least he is extremely patient and just listens and takes notes, I love all my doctors and their patience!!!!! They put up with so much from me and are so kind about it! Thank you all!!!!

Anyways he didn't really have any answers as to why anything is going on with Payten. But what's new, who really has answers? No one and that is okay, frustrating, but okay. The only thing he noticed was her breathing. It was not normal! She would take long pauses and then a deep breathe, then long pauses, deep breathe, etc. So he scoped her in his office to see if there was anything blocking or irritating her airway. Nothing! It was clear and beautiful. He said he did not see any sign of irritation or infection in her nose, throat or ears so he had no reason to put her on antibiotics, but he wanted me to call Dr. Panesar and find out the results of the trach aspirate culture because her breathing was worry some. And that is what I did. I say thank you to Dr. Mancuso for giving me that extra push to call and bug Dr. Panesar because we treated Payten's symptoms that much sooner, than if I would have kept waiting for Dr. P. to call.

I always go back and forth on whether or not to call and bug my doctors. I hate feeling like the annoying Mom all the time.  But I am glad I called because Payten got worse later that day (Thursday) and yesterday (Friday) she was struggling with her Oxygen Saturation's, etc. Today she seems to be doing a little better so I think the medications are helping. If I would not have called and bugged Dr. Panesar we might be in the hospital today, so, Thank You to both Dr. Mancuso and Dr. Panesar! You are both GREAT Doctors and you always help in every way you can! We love you guys!!!!!

Also at my appointment with Dr. Mancuso, we discussed a test that was done in the hospital the last time Payten was there which was August 16th through the 18th. It was a BAER Test (Brainstem Auditory Evoked Response Test) I thought we were getting a ABR Test (Auditory Brainsteam Response Test) I don't really know the difference to well between the test, all I know is that the BAER test is a more extensive look at the brain and the ABR is more extensive look that the Auditory function. I requested the test to be done because there have been questions and concerns about Payten's hearing, by myself and by therapist's. And with Payten's Diagnosis' she has a great chance of becoming deaf and blind so I want to look at both areas and make sure everything is okay. I still need to get in to see the Eye Doctor, but I am working on it. I figure one step at a time. At least we are addressing one of the area's for now!

I am happy that we got the BAER Test done because it showed us some good things. It showed that the nerves in her ears are functioning properly, but there is a significant slowly between the ears and the brain. What does that mean, no one can really tell me. Neurology said that her hearing is fine, but when I talked to Dr. Mancuso he said No, this can indeed be a sign that the hearing is affected, but he can't tell with this type of test. He went on to say that even though the nerves in the ears are functioning properly we do not hear with those, we hear with our brain and so therefore if there is a problem with the brain function then the hearing could indeed be affected. So right now all I know is that the BAER Test is abnormal in the sense that the brain is not functioning quickly/properly with the messages from the ears. Dr. Cook our Neurologist said that this could be due to her Neuro-Transmitter Disease or it could be due to her Brainstem not developing and in six months we will repeat the test and that will show us if it is her disease or her brainstem.

But I am not okay with this. To me this is not a good enough answer. I am not the mom that is going to wait! I want an answer as to how this affects my child. How is her hearing affected? What does the slowing mean? Can we fixed this? What does this mean Therapeutic wise? Will she be able to communicate? Is it more processing than hearing or vice versa? These are all things I want answered. And I thought that with this test Dr. Mancuso might be able to give me some of these answers, but he can't. He did say that from what he could understand from the test, Payten could suffer from a disorder, he gave me several names of some disorders it could be, but with him leaving a message through his messaging service, I could not understand/hear clearly what those names were or ask him to spell/repeat it for me. So I am unable to let you know what those disorders are, until I talk with him again and get those names. He also said to fully determine if she suffers from one of these disorders we would need to do further Audiology testing, but he did not tell me how to get those set up. So I need to call him on Monday and BUG him as to how we can further pursue this matter, because I do not want to ignore this. If there indeed is a problem I want to know and fix it, that is if we can! I hope that we are just being overly cautious and that there is nothing wrong, but all I can say is when I got the results of the BAER Test my gut told me that there was something more wrong and I needed to push the issue more and that is what I am doing. Please pray for Payten in hopes that we figure all of this out and can help her with whatever we find! Much love to you all and God bless!

Collin Raye - She's With Me

A little while back I wrote a post entitled, SHE'S WITH ME. In that post I wrote about Collin Raye and about his grandchild and the song he wrote for her. I talked about how grateful I was for the song and how it related to Payten and how it expressed every feeling I have ever felt regarding her life. Today I came across this music video by Collin Raye and it shows his precious grand-daughter! What a beautiful little girl. Thank you Collin Raye for your beautiful song, it has truly touched my families heart. I posted this video for you all to enjoy! Thanks!

Payten Working hard at Physical Therapy!

Yesterday was an incredible day for Payten! She did fa nominal! Just when you are down and discouraged, she does something AMAZING and helps you regain all hope! I love my Payten for that! Surprisingly she was in a good mood for Physical Therapy. She has not been sleeping well at night and is still having issues with her trach. She is having tons and tons of secretions and plugs in her trach. So it was a good thing to see her happy and motivated to work as hard as she did yesterday. In the video's it shows her on her tummy doing some weight baring exercises through her arms, which this is the best job she has ever done thus far, so I was excited that I captured it on video. Sorry there is no sound. I don't know why the sound does not work because it works on my phone! Who knows! At least I got the video's posted, sound or no sound, I tried all day yesterday to post them and couldn't, so I am just ecstatic that I got them up on my blog! I  hope everyone enjoys watching them. I could not decide which one to choose so I posted all of them.

There is also a couple video's of her working on her sitting and weight baring through her arms while sitting. Another thing that she did yesterday that was the best she has ever done before. Maybe Payten needs to go without sleep more often! (just kidding) It makes me wonder sometimes why we have really bad days and then really good days? Why can't we just have a few really bad days, get better and then have really good days that out weigh the bad? Oh if I could be in control, what a grand thing that would be!

Also, today we saw Dr. Panesar and I told him everything that was going on with her health. He is not sure if it is still her sinuses or if it is her lungs or if she has some sort of respiratory infection. So he sent us to get some X-Rays of her sinuses and lungs and he wants a trach aspirate culture in hopes that something will give him an answer as to why she is doing what she is doing. He believes that he will probably need to bring her in and do a Brochoscopy next week, to clean out her sinus cavity and lungs. Lets hope that whatever is decided will help Payten and give her some relief soon.

At least through it all she is still SMILING! It truly amazes me how strong she is. I hope you enjoy the video's and please keep Payten in your prayers. Thanks so much! I am off to figure out what to do for Payten's birthday; it is coming up in a couple of weeks! Yay and Wow all in one! She is turning TWO!!!! If any of you have ideas on what we can do for her Birthday, that would be fun for a child with physical impairments, let me know, email me or leave a comment, it would be so appreciated. I am having a hard time finding ideas and I want to make this day special for her! I hope everyone has a fabulous weekend! Oh and I changed her blog around for FALL, in hopes that

fall-ish weather would visit us here in Arizona soon! Happy Haunting everyone!!!!! 

Mindy Gledhill- All About Your Heart ( Nie version)

I am happy to annouce that Payten is doing much, much better! Everyday she seems to do more! But I am sad to say that this past weekend was a very emotional weekend. I don't know why, it just was! I seriously thought I was over the mourning/sadness part, regarding Payten and her disablities. This weekend, I realized that it will always be there. It is NEVER going to go away, but I do not have to dwell on the sadness. I can let the emotions out, as they come, for the moment there in, but I can not let it over power me and this weekend I allowed them to over power me.

I have learned that I have to choose to, either be sad or to look at the beauty. I want to choose the beauty! Sometimes though, I don't know how to do that. I guess I am still learning, maybe someday I will get it all figured out, but for now I will keep trying. I just want so badly for Payten to beable to express her personality to everyone she see's and she can't and that makes me sad to think about. I can see it in her, it shines through her eyes, she is everything beautiful, she has an amazing spirit and I do not think people always see it, but rather they see her disablity. I wish I could change that and I can't!

I believe the Lord works through other people because My Sister In Law sent me an email over the weekend that really opened my eyes. It was a mothers description/definition about what it is like to raise a child with special needs. She compared it to preparing for a fabulous trip to Italy, learning all you can about your destination, ect. Then when you reach your destination, it is not Italy you have been taken to, but rather Holland. Right then you have to change your plans, you have to learn a new language and get different instruction books, etc. At first you may be sad, but eventually you start to see the beauty that Holland has to offer. You soon realize that you have two choices, you can choose to live your life mourning the fact that you didn't get to go to Italy or choose to live your life enjoying what Holland has to offer. What a beautiful way of describing it, it truly is like that and I was blessed to have been able to read it.

This truly was inspiration on my Sister's part, it helped me realize that this weekend I made the wrong choice. I was not enjoying what Payten had to offer, but rather was mourning what she could not offer. Thank you Brianna for bringing me back to what is important and that is Payten and her beauty! Today, another friend helped me realize the beauty of my child, she posted a video of her daughter to the song entitled All About Your Heart. I have posted it above for all of you to enjoy. It is a deeply moving song that brought tears to my eyes thinking about how it pertained to Payten. This too brought me back to the important things, this too reminded me of what it is all about, this too helped me to see that no matter what, Payten is beautiful and if others don't see it, then they don't see it and that it is their loss not mine or hers.

I love the line in the song that says, "You are a Butterfly held captive, small and safe in your cocoon. Go on, take your time, time is said to heal all wounds".... This is Payten! Payten is truly a butterfly, who can not necessarily show all of her beauty, due to the fact that she is held captive by her disablities, but through and in her own time, she will break out from that small cacoon and be that amazing butterfly she is inside! I also love the line where it says, "In my imagination, you are a VanGo Painting".... because Payten is a VanGo painting, Perfect and Flawless in everyway!

I am so thankful for my Father in Heaven for showing me the beautiful blessings my life has! I am going to try, not always do, because I know I will fail at times; but I am going to try to look for the beauty Payten's life has to offer! I am the Lucky one to know her heart and if you are so fortunate enough to get to know her heart too, then you will understand what I mean and know how blessed you are! I am glad that she is doing better day by day and I hope we can keep going on this path of wellness!!!!! Also below I have posted a video of Payten during OT playing with blocks! Warning: It is full of CUTENESS! Enjoy!