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!