My oh my how time goes by!!!!

Wow it has been a LONG time since I have been on here! Lots have happened since the last post, we celebrated Halloween, Thanksgiving and soon it will be Christmas! We also found the time to move despite the Craziness life can bring with holidays, kids, work, etc.! It was a bitter sweet moment in the Merrill families life. We left a home that was ours for 5 years, that had many memories both good and bad, but in the end we realized how truly  happy and blessed we were to able to move and start a new. Sometimes a clean slate is the best slate!!!!! That is what we have and we are excited to see what new adventures come with it!

 Payten had a lovely Halloween! She went as a butterfly and boy was she cute! We went to a couple of parties and on Halloween she helped her Daddy pass out candy. It was so fun! I think she really enjoyed herself, even though she did not get to enjoy the CANDY that comes with Halloween! Thanksgiving was good as well, not much to report there, she watched us eat! How sad is that, she couldn't enjoy any of the yummy foods Thanksgiving has to offer! Oh well I still think she enjoyed being with family and getting all that attention! Boy does Payten LOVE attention!!!! She is kind of spoiled in that way, but hey at least we can spoil her someway right???!!!! Love and Attention, it doesn't get much better than that! So thus far the holiday's have been GREAT! Here's to hoping for a fabulous Christmas, that is Hospital FREE! I don't think that is too greedy of me, do you???!!!!

 I am happy to announce that Payten is doing well! She is not sick, she is not on antibiotics, she has not been in the hospital since August and her last Doctors appointment was early November! Can we say AMAZING! I am so happy! I did not think this day would ever come! I hoped for it, but I did not think it would come! We are so blessed that she is stabilizing and getting stronger. Words can not express how it feels to not be in the hospital all the time or on medication or at doctors offices. It is a horrible thing when you have to endure those things all the time. So that is what I was most Thankful for this Thanksgiving, the gift of health for my little Payten and I think our families Christmas Wish will come true, Payten staying healthy, strong and away from the hospital! Greedy? I think not!!!!

 I think not only is Payten getting stronger, but we are becoming more accustom to her and her complications. We are not worrying as much as we did in the beginning and that is huge for these types of situations.  We have become more confident within ourselves and have gained  the knowledge and confidence we need to do it on our own, so that we are not having to rely on the doctors or hospital as often! I have prayed and prayed that is would come and it has! I love seeing my prayers answered and the blessings that come with those answered prayers. It truly is amazing to see not only the changes in Payten but also the changes in myself and my husband!

 We are finally starting to get settled into our new home and are enjoying not being so busy with appointments. We are closer into town, which is so nice, I don't feel like I am driving all the time! I did not realize how much time I was wasting driving! I truly am savoring all the extra time I have living closer to places that I go everyday! What blessing that has been for me! We love our new home! We love that it is a one story home, we are not having to carry the ventilator and other medical equipment, along with Payten up and down the stairs two to three times a day and the kids have an awesome backyard that they love playing in! We could not have asked for a better home! Let's hope we can stay here for a few years, til we can buy a home of our own again!

 I want to Wish everyone a Merry Christmas and Happy New Year, I do not know when I will be on here again and so I want to say that before it is too late! Thank you all for your love and support and I hope you all had a lovely Thanksgiving and that you enjoy the rest of this beautiful holiday season. Always remember the reason for the season! God bless!

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!

Long Time, No Blog! Finally an update on Payten!!!

Wow! I can not believe it has been over a month since I have blogged on here! I guess when you have a CRAZY/SUPER BUSY Life, time flies without even realizing it. Sorry that I have not updated for awhile, I have wanted to, but with Payten being in and out of the hospital, kids starting a new school year and my computer being out of commission, etc. I just have not been able to. But thankfully things are seeming to calm down and my computer is back up and running, Yay! Anyways, back to the topic at hand, Payten! What to say about Payten....Allot has happened since the last time I blogged!

Last time I blogged Payten had just gotten out of the hospital after having her Phenylalanine test done. Which by the way came back normal, which means that the diagnosis GTP Cyclohydrolase Deficiency is confirmed, there is nothing else to add to it! The plan after the test was done, was to bring Payten back to the hospital for medication trials, which indeed did happen. Payten was brought back on August 16, 2010 and was discharged on August 18, 2010. We were on the understanding that we would be there for 5 days, but because Payten responded super well to the medication, we were able to go home sooner than later! That is always a good thing!

Payten was placed on Levodopa, Carbidopa and 5 HTP to help with her Neuro-Transmitter Disease (GTP Cyclohydrolase Deficiency). The reason she had to be hospitalized was to watch her vital signs and make sure it did not send her into Cardiac Arrest, etc. Luckily she did not have any problems with the medication! But that did not mean that there was no Drama! While there, Payten had issues with her vent, issues that were not new, but issues the hospital did not like and so they wanted to up size her trach and everyone was on the same page except for one of her Doctors and so we ended up leaving the trach alone and trying something else, which has seemed to help! I am happy that we found a solution, we could have done without all the drama, but all in all we came to a solution and that is all that matters.

Also while in the hospital, we had them do an ABR test (Auditory Brain Stem Response Test.) Just to give us an idea about Payten's hearing and if it is registering, etc. It came back that the Nerves and everything in the Ears are functioning and working correctly, but that there is a dramatic slowing when it gets to the brain. The Neurologist said that it is due to her Brain stem not developing/growing and he is hoping that the new medication she is on will help with this and in 6 months we will do the test again to see if there is any improvement. If there is then we know the medication has help, if there is not, then we will open that can of worms, but until then we will hope for the best. I am going to speak with her ENT Doctor and hopefully one of his Audiologist to find out what this means on the standpoint of therapies, etc. and how it affects the hearing, does she hear the sound, but it is not being processed, what???? Lot's of questions that need to be answered, so when I get those answers, I will let you all know!

When we got home from the hospital, we found out that Payten had a Sinus Infection that showed up on a CAT Scan that had been done in the hospital. So our Doctor put Payten on a 20 day run of Augmentum in hopes that it would clear. She seemed to be doing well, until a couple of weeks ago. She started having Mucus Plugs Galore. I was having to change her trach 2 to 3 times a day, not typical or normal, so that was red flag number one! Then her secretions became out of control, we were suctioning her every five minutes and still having plugs! Again something that is not typical or normal, red flag number 2. Then she became very lethargic, pale, her seizures increased and she was extremely irritable, she was tired, but was not sleeping well, and just plain miserable, red flag number 3. We went back and forth that whole weekend trying to decide if we should take her into the hospital or not. We decided to wait and see the PCP Doctor on Tuesday due to it being Labor Day Weekend. When we saw our PCP it was determined that she still had a Sinus Infection and needed to go on another 15 days of medication, Omniceft.

About an hour after we got home from seeing the Doctor, Payten went into a non-controllable shaking episode. Her whole body was moving uncontrollably and she was very agitated and combative. This went on for 3 hours, I was going to call 911 and to be quite frank, I should have called 911, but I tend to try to solve things on my own. So instead I put a call into the Neurologist who called me back a few hours later and said to go down on the Dosage of Medication. Which we did and it seemed to help a little, but not enough. Two days later he called me again to see how Payten was doing, which she was not well. She was crying non-stop, still having tremor like motions, and her secretions were still out of control. He informed me that he believes this was all due to Payten being over dosed on her new medication. He said that he had a feeling to go down and check her medication dosage in the Pharmacy. He found that the Pharmacy had made a HUGE mistake in the Concentration of the Medication and therefore was overdosing Payten by quite a bit and so she was having big side affects of the overdose. He said that the crying was probably from Hallucinations and that indeed the uncontrolled movements were Tremors. He said the secretions could have been due to the overdosage as well, but he was not positive, so to keep giving her the Omniceft. In other words, all of this could have been avoided if someone would have paid attention to what they were doing and did their job right. But instead a little girl had to suffer due to someone else's mistake. It truly makes me sick inside to think about it and what could have happened if we did not catch it in time. Thankfully my doctor listened to his intuition and checked her dosage at the Pharmacy.

Since stopping the Medication things have gotten allot better. Her demeanor has changed dramatically. She is happy again, she is sleeping again, and she is not combative any more! The tremor movements are still there, not as bad as they were, but she is still having them. Everyday seems to get less and less, so I hope in a few days it will be no more. Her secretions are still out of control, which makes me think that is more Sinus related, then Medication related, but who knows and the plugs are no more! Yay, I am not having to change the trach everyday! So I do not know what was up with that, but happy that they are gone! All in All Payten is getting back to her normal self. She is not fully there, but over time she will get there. I still think she has a Sinus Infection that is not clearing and have questions as to why that is. But we see her Pulmonologist next week and then her ENT the following and we should get some answers from them, let's hope we can figure this out, so that she does not have to suffer with this Sinus Infection any longer! We also found that Payten is growing Pseudomonas in her Poop from a stool culture the PCP had us get and she is on medication for that as well. I hope everything clears and we can get back to normal soon! Again I apologize that it has been so long, but hopefully now that life is calming down and I am seeming to get a grip on things, I will have more time to just sit and blog! Wish me luck with that! Have a good day, I know Payten is and that is always a good day for me! Goodbye, God Bless and take care! :)

Attitude is EVERYTHING!

Payten and her BEAUTIFUL friend Alyssa!

Through this year and half, I have found that attitude and perception are everything! If you have a bad attitude or a negative perception, then it will end up being just that, negative and bad! Today could have been one of those NO GOOD, VERY BAD DAYS! But instead I turned my attitude and perception around and it ended up being a BEAUTIFUL day, that kinda started on a bad note! I have learned through this experience with Payten, that I can not control everything life hands me. I have to laugh at things and myself! I have learned not to let the little things get to me and not hold onto things, but rather let them go! Life is to short to constantly be frustrated and angry!

Today I woke up late! I received a phone call an hour before we needed to be to the hospital, saying that we needed to be to the hospital in an hour! None of the kids were ready, none of Payten's things were together and I was fumbling trying to get everything in order! We got to the hospital 15 minutes late, I forgot my wallet, my cell phone, Payten's insurance cards, and some of Payten's medication! At first I was super frustrated, because usually I am on top of things, usually I am not this unorganized, but for whatever reason I was having an off day! I realized all I could really do is laugh at myself and thank heaven that my head was still strapped on!

Then after getting settled in our room and talking with the Doctor, I find out that Payten will not be staying the four days that we had anticipated, but rather she would stay for the test and then go home and come back in three weeks! Again I thought I could get angry and frustrated, but instead I let it go. I didn't let it bother me, I figured at least we were getting one of the tests done and for whatever reason she needed to wait and that it would end up being a blessing in disguise, we just needed to look for the blessing!

Shortly after this, I was blessed to have a beautiful experience and received a beautiful compliment! I was able to meet a sweet family, who is facing some hardships that I am no stranger too. Their child is developmentally delayed, with low muscle tone, not only that, she is having feeding and respiratory issues, to the point of needing a Tracheotomy and G-Tube placement. I was honored to be asked to talk with them and teach them what I know and help them coupe with their feelings. I shared with them my heartache that I felt when I was faced with these same decisions and what a difference it made in my child's life. I taught them things that I had learned over time and explained things that they were having a hard time understanding, I even cried with them. It was such a wonderful experience! I realized I love helping people and talking with them and teaching them, it brought me so much joy! Then the compliment came. After I was done speaking with the family, my Doctor came in and thanked me and told me that he knew I was the person to ask because I have dealt with the trials I have been handed with poise, and that I have gained a lot of knowledge through my experience and have tons of hands on experience. He went on to say that he feels I am doing a wonderful job with Payten.

All I can say is, This made my day! Who doesn't like a compliment, especially from their Doctor! I always think, My Doctors hate me! They think I am so annoying! Oh no here comes Payten Merrill and her Parents, lets hide!!!! Why I think these things, I don't know, I just do! But when I hear things like this, it makes me realize that my Doctors do like me and they do respect me and they think I am a good mom, who is doing a good job and that helps me to keep chugging along! So even though my day started out on a bad note, it ended on a very happy and good note! And it is all thanks to the change in my perception and attitude! This experience I had at the hospital made me realize that I really do want to pursue a degree in Nursing or something like it. I want to help people, it brings me joy!

While in the hospital, we found out that Payten does not suffer from Rhetts Syndrome! What a blessing and relief that is! It is a weight lifted off my shoulders! Now we just need to hope that the medication for the GTP Cyclohydrolase Deficiency will help and make a difference in Payten's life! As of right now, Payten is doing good, she is healthy and she has started rolling more and more! She is also responding to people with smiles! These things may be small and simple, but they are so huge for Payten and we are so proud of her. We know it is because of all the prayers and love that you all have been sending our way. It truly has made all of this possible. To all of you, we say, thank you, we love you all and appreciate you so much! Remember Attitude is everything! You can change your day, by changing your perception and attitude! I think if we could all master this talent, the world would be a better place!

Past few days...One word...CRAZINESS!

Oh boy what a few days it has been! Payten is sick, but what is new! We really do not know what is wrong with her, we just know that she is sick! And not at a good time either! She is suppose to go in for testing next week and Dr. Cook is not going to let her go in if she is still sick! Ugh! We can not keep putting this off, she needs the medication or she is just going to keep digressing! I just wish they would do it, sick or not, she needs it done and there is not a huge window of opportunity for when Payten is well. Dr. Panesar says she is fine to do it, so that is going to be my argument when I see Dr. Cook on Friday! I am crossing my fingers that I win and she goes in next week, because I want this over and done with!

On top of all this, Makenna, Payten's sister, had surgery Monday! She had her Tonsil's and Adenoids removed. What a not so happy camper she is! Wow, it is hard dealing with two kiddos who are sick! While we were in the hospital, Payten had an episode where she could not breathe or get a deep enough breath. Joseph almost called 911, but she finally stabilized. Thank Heaven for that! I took her in to see Dr. Panesar the following day and he seems to think her airway is worsening. Oh heaven, I hope that is not the case, because why would it be worsening? The tracheomalcia is getting better or was, so it has to be stemming from the brain. What my thought is, is that the brain issues are getting worse, which is causing the breathing issues to worsen. The answer, venting her more! We might have to vent her all the time, I sure hope not, but it is a manageable thing that many people have to do, and so if we have to, we have to.

With all of this weighing on my mind, I have not been handling ordinary life very well. To be quite frank, I have been a wreck! I am trying to keep it together, but it is so hard when you have so much going on and so much you are worrying about. Maybe on Friday we will receive more answers from Dr. Cook. As for now we are just tugging along, trying to keep Payten well and Makenna Hydrated! At least we are home, all together, safe and sound! Gotta count all the blessings I can! Zachary is healthy and strong and chugging along! Yay for that! Even though it may not seem like it, I do LOVE my life! I have a good life, full of blessings!

Oh, by the way, I am thinking about going back to school! How crazy is that? It has been weighing on my mind a lot. I am debating between getting my nursing degree or getting a degree in Respiratory Therapy or maybe a degree in both! I even thought about a Physician's Assistant! Hey if I am going to do it, I might as well do it right and dream big! I will let you all know what I decide! As for now I am going to enjoy the peace and quiet of the moment and relax from the stresses of the day! You all have a good night!

Update on Payten's life!

My apologies to everyone for not updating my blog for a few days! I have had a busy week with no time to blog! I also needed time to clear my head and collect my emotions, etc., etc!

The last time I blogged, I explained my frustrations about people not respecting other people's time and feelings. Payten's surgery did not go as planned. It actually seemed to be a nightmare at the time. As you know from my previous post the surgery had been canceled on Wednesday and rescheduled for Friday. It was extremely frustrating. But after being able to step away and really clear my mind and think about the whole situation, it turned out to be a blessing in disguise.

I was able to pray about things and receive clarification. I was able to gain greater understanding about everything that happened. I now understand the Surgeon's point of view and the meaning of his words. When he wanted to know if Payten was going to be admitted, he was not referring to his procedure, but rather was inquiring about Neurology's plan and if they wanted to admit her. He soon found out they had no plans on doing testing at the time, but upon asking he had no clue, it was a huge misunderstanding.

And then when he commented about the Trach and how he thought it would need to be sutured in, was not a moment of stupidity, but rather a moment of being couscous. I now fully understand where he was coming from when he said this, he was just trying to prevent infection. He did not want the trach tie to rub or irritate the incision site. He was trying to protect Payten. Typically when he does a port placement, he goes in through the neck and down to the chest. Therefore he was worried that the trach tie would be in the way. At the time he did explain that he would try to make the incision somewhere else, but that in most cases the only place he has been able to access the site is along the neck and so therefore would most likely need to suture in the trach. I did not hear his alternative or absorb the information he was telling us at first, because I was freaking out about the trach being "sewn" in!!!!! But luckily the Lord stepped in and gave me more time to clarify things!

When I was really able to stop and think about it, it really did make sense to me and I knew that whatever happened would be manageable. No did not calm my nerves and no it would not be ideal or fun, but it would okay. Luckily in the end it all worked out! The surgery went BEAUTIFULLY! Payten was a rock star!!!! Dr. Pham was able to do the surgery without having to suture in the trach! Thank Heaven, that was a sure blessing! I truly appreciate Dr. Pham, I feel that he listened to our concerns and respected us enough to do everything he could, to not have to sew in the trach. I wish that Post Op would have been as good of an experience as surgery was, but unfortunately it was not.

I did not feel that we were treated very well. They rushed us out before we were ready. Payten was still under Anastasia when we went home! We went home after listening to them ask us over and over again, are you ready to go home, we are not trying to rush you, we just think it would be best if you went home because it will be awhile before she wakes up, after all it is nap time! I felt like they were tried of dealing with us! I felt very unwanted! That is not a feeling you should feel after your child has just gone through surgery! I was very upset! I felt very mistreated. They did not listen to any of our concerns. And to add to it all, Payten had a plug in her trach and needed to have it changed and they ignored our concerns. We expressed our concerns about the trach, 5 times and the nurses kept on ignoring us. They kept saying it was nothing and we were over reacting! We ended up changing it at home and sure enough there was a plug! Nurse's need to learn to listen to the Parent! Mom's know best!!!! But all in all everything ended up okay, Payten came out of surgery fine and that is all that matters. She does not even act like she had surgery. She is so amazing! She is so strong! She is my Shining Star! I love her so much! She teaches me something new everyday and that is a gift! I love what this experience taught me! I am grateful for the lesson I learned!

Monday was our Golf-A-Thon for Payten and what a success it was! We raised $4500 for Payten's Charity! Words can not express the gratitude we have for everyone who helped make this event possible. The proceeds will help so much! It will truly make a difference! Thank you to everyone who played a part, thank you for making this event such a success, we love you so much for your generosity in helping Payten and others like her! It was so much fun, I really believe the golfers had a blast! What a wonderful way to spend our day! We are going to do it again in October and I am happy to announce that all the Golfer's said they would be there! That was wonderful to hear! Let's hope we will have more participants this next time and that we raise even more money, because every bit counts and every bit will go to help a child!

Now I do have to give my apologies to Fox 10 News. Yes, I am still upset that Fox 10 did not have the courtesy to call and cancel their interview last week. The news did show up to our event, they were unannounced, but they came! It was kinda bitter sweet! I was not prepared at all, but it was a good experience! I think it aired on Channel 5 and 15, I do not know about 10, but I do know that the camera guy worked for all three stations and they came because of Fox 10, so thank you Fox 10 for showing up and doing a story on Payten, we do appreciate it! (See I can admit when I am wrong!!!!) It still does not dismiss the lack of respect they had for us last week, but I will take back my words about Fox 10 not caring! I am sorry I said that! I was quick to judge and I apologize!

We are still accepting Pledges for the Golf-A-Thon until Thursday, so you still have an opportunity to donate if you would like. Also there is a donate button on Payten's Website, helpingpayten.com, and all the proceeds to go Payten's Charity, Payten's Prayer, it is a tax deductible organization, so it truly is a win win situation! Payten will thank you someday for you kindness, generosity and love.

That is the update for now on our life with Payten! Again I am sorry I left everyone hanging for a few days! Now the plan for Payten, is to wait until the 26th of July at which point, Payten will be admitted for her Neurological testing. She will be in for a week and we need prayers that this medication will help Payten. We need prayers that it will help better her and the quality of her life. I hope that she will reach at least some of her milestones. It breaks my heart to see other children crawling, sitting, babbling, walking, talking, etc. I want those things for Payten and this medication might be the answer we are so desperately looking for, let's hope it is! Thank you all again, we love you so much.

Surgery Rescheduled!

Sorry everybody, for not getting on sooner to give you an update on Payten and how her surgery went. I needed time to cool down! The events of this week have brought me to my boiling point! Therefore I was having an extremely emotional day, full of tension and frustration. First off I have been extremely bothered by the fact that Fox 10 News blew us off on Monday. For those of you who did not know, over the weekend Fox 10 contacted us and said that they wanted to interview us about Payten and her Charity and the fundraiser we are having on July 12! They did not show up! I feel that it was extremely uncaring to set up an appointment and then not show up. The explanation I was given was...Oh sorry about Monday, we don't know when or even if we can do a story. We will hold onto your name and number and if we decide we can or have time we will call you. Give me a break that is not an apology. They claim they are so caring and compassionate towards families and the community and that they want to help others etc. But all they really care about are Ratings and what is going to get them the most viewers. And this is a prime example of that. If they truly cared they would have shown up. So that was the First thing this week that bothered me. Secondly, today Payten had surgery scheduled at 11 am and as you all know, I was extremely nervous, as any parent would be. We arrived at the hospital at 8:30 am and we waited 3 hours in Pre-Op for the doctor to come. Finally after 3 hrs. of waiting, we met the surgeon. That is when the nerves really kicked in! After introducing himself, he says, Now will Payten be being admitted after surgery? (Huh?) I don't know Doc? You tell me? Then he proceeds to say, Oh, wow, I did not know she had a Trach! (Seriously? Did you look at her chart?) That changes things! Ummm, I was planning on going through her neck right where the Trach Collar is and using that vein to place the port, so I am going to have to remove the collar and suture in the trach. (What?) Oh don't worry she can go home like that. Actually (hahaha) it will work better than the trach collar! (Seriously, I don't think so!) Then he goes on to explain everything about the procedure, answers our questions and leaves. While in the meantime, I am sitting there freaking out, asking myself if this surgeon knows what he is doing and if we need to call Dr. Mancuso and have him come down here for the surgery. I was ready to cry because I was so nervous. Then the doctor comes back in after a short while and informs us that he does not have the right Port, so therefore is going to have to reschedule the surgery for Friday. Are you kidding me? You did not know this prior to us coming down here and wasting 4 hrs of our day. Joseph took work off for this, are you going to reimburse us for our time! NO! I feel so used and abused! I feel like no one respects me or my time! I do not think either of these parties understands how hard it is for me to prepare for these types of events and what time and effort I put into something like this. Then to have them blown off like they were, so frustrating, so uncalled for and wrong! I wish people could live my life for a day and see how things like this effect me and my family. But on the other hand I am relieved a little bit about the surgery being postponed because we were able to call Dr. Mancuso's office and inform him of the surgery and what the surgeon said about the trach. Hopefully he will be able to be there to help with the surgery that day and if not, at least he will be able to discuss it with the doctor and come later to take the stitches out for us. We would rather Payten not go home with her trach stitched into place! I also understand mistakes happen and things sometimes can not be controlled, so therefore I am not as upset at the hospital, as I am Fox 10 News! Fox 10 was rude and inconsiderate! Ugh! Life is so hard and frustrating at times. I feel like I am having a lesson in patience, understanding and forgiveness! Lets hope I pass!!!! I think I am doing a pretty good job, I am not too bitter, I am a little frustrated, but not angry! And besides, now that I have had the chance to get it off my chest, I will be over it soon. I did not lose it on anyone in the hospital, so that is a point for me!!!!!! Now, for an update, Payten did not have surgery today (LOL! as I just discussed above!), she will have surgery on Friday. Please Pray that the Doctor will be inspired and know what to do for our Payten that will best help her! Thanks for all your prayers thus far, they are truly needed and much appreciated!

It's Official! Payten is getting a Permanent Port!!!

It is official! Payten will be having a Permanent Port Placed Tomorrow! She will go in for Surgery at 11 am, check in at 9 am! The Surgery will last for at least an hour and a half, if not longer! They have the OR Scheduled for 2 hours, let's hope it doesn't take that long or that it doesn't go over the 2 hour mark! After Surgery she will be admitted to the PICU and be there for at least a day. With all her complications and medical history, they want to monitor her and make sure she handles the stress of surgery well before they send her home. I still do not know much about the Port and the side effects/risks or what it in tales exactly, but tomorrow after I speak with the Surgeon I will know more and I will definitely let you all know what I find out! I am still nervous about the surgery, but that is normal! Any surgery is nerve racking, especially when it is your child!!!! The nerves will be there until the surgery is over and I see that she comes out okay! Anyways, sorry I have not been on here for a little while, things have been busy! We were suppose to have had an interview with Fox 10 News yesterday in regards to Payten's Golf-A-Thon and Charity! (which is in less than a week! You can still participate!!! No pressure!! LOL!) And can you believe it, they stood us up! No!, they did not call to let us know they were not coming. How frustrating is that? Very!!!!! We got everything ready, we put our day on hold and Joseph got off work early, it would have been nice to know that they were not coming. Oh well, their loss right?!!!! Payten has been good, she seems to be stable right now, so lets hope the surgery doesn't set her back too much. But let's face it, it probably will! It seems like we are constantly in the same vicious cycle of Payten taking one step forward and then two steps back! I can't wait until we can stop the cycle, but I don't see it happening anytime soon! Let's hope I am just being negative and that the cycle will come to an end soon. Pray for Payten that she comes out of Surgery fine and that her recovery is easy and quick! Love you all! I will post her status tomorrow after surgery, so stay tuned! As for now, have a good night!!!!

Permanent Port or Not?! That is the Question!!!!!

Finally the Neurologist called me back! Still no definitive answers as to when he will bring Payten into the hospital for testing, but his Nurse said they are discussing it and it will be soon, as long as she is well. Before he decides anything though, he wants to talk with Payten's Surgeon Dr. Mirza and find out about having him put a Permanent Port in Payten. Oh boy! I don't know. I hate the word Permanent! I understand why they want to do it. I just don't know if I want a Permanent Procedure done. I do truly hate watching each time she goes into the hospital, the pain she goes through, along with the struggle the nurses and doctors have while trying to get an IV placed. This will make it so much easier for her and them, but it is permanent! I need to research the risks involved and what can happen if she pulls it out, etc. Another hole in her body can't be good, can it?! I don't know! I wish I wasn't faced with such hard decisions, but that is what being a parent is all about, decisions, good and bad, some are just faced with harder ones than others! Once Dr. Cook speaks with the Surgeon, he wants to bring her in, have them place the Port and then he will start testing, so it might be a longer stay than I thought! Oh goody we get to learn a new skill! Just another step closer to becoming a Nurse!!!!!! I hope it all goes well and happens soon! The less I have to sit and think about the less fearful I will become which will be better for everyone! Pray for us that we can receive clear distinct answers to whether this is what is best for Payten or not! I feel it is, but I still need to really pray about it! So Please if you can help us by praying for us, we would truly appreciate it! Thank you!

TROUBLE!

Oh my goodness we have trouble! Payten's middle name from this point on will be trouble!!!!! Why is it that she will have such a great day and then have a horrible day! I just don't get it? I want a week of greatness, not just a day! Is that too much to ask for?! Yesterday she was so good! She was alert and full of energy, playing with everyone around her. Then early this morning at 3 am she woke up angry and irritated. She pulled her trach out 4 times! She has learned how to undo the Velcro strap and then rips the trach out. She is too smart for her own good! On top of that, she has learned how to unbuckle her chair straps! Yah that's right, unbuckle them!!!! She almost fell out onto her head this morning! What am I going to do with her! If she is not strapped in, she will hurt herself, but how do leave her strapped in if she knows how to undo it! What to do, oh what to do! And the trach, I just throw my hands in the air and say, "I give up!!!!!" She needs it in, but she does not want to leave it in! Let's hope this new trach Dr. Mancuso is ordering will do the trick and Payten will keep it in! I am amazed that I have not had a nervous break down yet! This child is going to be the death of me!!!!! But oh how I love her, that's for sure! She is just trouble at times! But trouble can be fun!!!! LOL! Lets hope this "trouble behavior" does not mean she is getting sick, because I do not know if I can handle it if she gets sick. That would be over the top for me! So Please pray for her that she gets better and less agitated! (NOT SICK!!!)

We are "Hospital" free for a few days at least!

AWWWW! Finally I feel like my life is back in order and I am finally back in the swing of things! It is AMAZING how one week of being in the hospital can throw EVERYTHING out of whack! It took me four days to get back to normal! And what a CRAZY four days they were! I am so happy to be home! Payten is doing well, she is engaged, playful, happy and SLEEPING! Yay! I am so happy that she is back to her normal patterns, it is a relief to see her doing so well. This tells me that her Neurological issues were the cause of her problems and that she was having increased seizures and because they upped her dose of Keppra she is doing better! Thank you Dr. Cook for listening! It is a relief to have Doctors hear my concerns and listen to them and address them! Let's hope she will stay well for a while, so we can keep moving forward with therapy's and milestones! I hope that we can get her sitting soon and weight bearing through her arms! That is my goal in the next few months, lets hope we can achieve it! I want to tell you all thank you so much for your prayers! It has helped us so much in being able to get through these past few weeks! I am trying to have a better attitude toward life and what it hands me! You know how the saying goes, Attitude is Everything! Let's hope it helps! We have a busy few weeks a head of us! So we are going to be in need of prayers to help us get through the month of July! Payten might be going in the Hospital next week for Neuro testing and then after that, we have our Golf-A-Thon Fundraiser, "Play For Payten" on Monday July 12, 2010. (If you want to pledge a donation or Play in the tournament go to integritygolfsolutions.com and scroll down the side bar until you see Play for Payten, click on the green button, choose a golfer to make a pledge to and make your donation. Or sign up under new user and enter the event location Chandler, Az, Play for Payten and start collecting pledges, it is that simple! You can also visit HelpingPayten.com for more information. Thanks for your help in this matter! Every bit counts!) After the Golf-A-thon, my other daughter, Makenna goes in on Monday July 19 for her Tonsil's and Adnoid's surgery! (I am not looking forward to this surgery! She is a little princess and so therefore is going to expect the royal treatment! I pray for the nurse who gets to care for her. May the Lord have mercy on her soul!!!!!!) So as you can see, we are going to have a Cardon's Month! What fun it will be! After the month of July craziness, I will be ready for school to begin! But for now I am enjoying the time we have hospital free! I am trying to get as much one on one time as I can with each kiddo before summer ends! I hope that I can achieve this goal and enjoy the summer while it lasts! Thank you again for your love and support. It means so much to us, especially Payten!

The Hospital is getting to ME!

Today was an extremely emotionally draining day! I have no idea why, it just was! The hospital is getting to me. We need to go home and stay home. It is so depressing being there. I saw so many critical cases this visit, it was hard to witness. Watching these families go through their difficulty was intense. It made me sad, my heart broke for them and it made me realize that one day, that will be me and it is hard to think about it.

Today it hit me like a ton of bricks, Payten is not going to get better. Yes, she may improve some, but she will NEVER be better. The hospital is always going to be an aspect in our lives. There is always going to be struggle with her. I saw some children today that had trachs and they were sitting, walking, babbling/talking, etc. and it made me sad. I just sat there watching them in envy and crying. Why? Why Payten? Why can't Payten just have a trach, why does she have other issues that she has to face? What am I doing wrong? Am I not working with her enough? How can I make it better? I want so badly to make it better! I want my child to sit, crawl, walk, talk and she can't and the reality is, she may never do some of these things!

I wish there was a straight forward answer as to why Payten is the way she is and there is not! I feel like I frustrate my Doctors because I am constantly bombarding them with questions. I feel like a burden when we are in the hospital. I feel like Payten is not critical enough to be in there and so therefore, we are wasting their time, but what do I do? What do you do, when your child gets sick and it is beyond your control, and the doctor admits you to the hospital, what do you do? How do you change that? How do you know when you are over reacting and when you are not? I wish it were simpler.

At times I think it would be better for everyone if Payten's mission would be finished because then she wouldn't be struggling or suffering and things would not be so stressful, but then I look at her and how beautiful she is and how happy she is and how happy she makes me and I HATE myself for ever thinking that way.

How do I juggle all of this? How do I have time to meet Payten's needs and meet the needs of the rest of my family? I know they are suffering too and I want to take it from them, I just don't know how to do it all. I am one person with so much on their shoulders and I feel like I am failing everyone and everything. People say I am so strong, but I feel so weak. I am trying to do my best and not allow emotions to overcome me, but they do. I love my family and I want to be the best I can for them, I just don't know how to do it all. Why does it have to be so hard? I look around me and everyone seems to have it together and they make it seem so effortless and easy. How do they do it?

I know I am too hard on myself, but how do you stop these thoughts and emotions from entering in and taking over? How do you not feel this way? Maybe it is a lack of sleep and stress, I just pray that one day this will all come to an end and everything will be okay and Payten will still be here happy and thriving. But not all prayers are answered in the way we want them answered. I just have to learn patience, love and understanding and have faith that the Lord will help me through all of this and that he will not allow me to have a nervous breakdown. Sorry for venting, but thank you for listening, it really helps to get these feelings out! Thank you and Good night!

Payten is rested and doing well!

I am happy to say, it's a new day, a new start, with a pair of freshly rested eyes! Payten seems to be doing a lot better today. That twinkle in her eye is slowing coming back and that makes me SMILE! She is still not her happy normal self, but with time she should get there! I have to apologize for my "ranting" post yesterday. (Now you see the emotional roller coaster that I am on when in the hospital, sorry!) It is insane sometimes what we are faced with. I think how do we parents do it! All I can say is we do!!!!!

Payten is still lethargic, but at least she is more alert and awake. They think that she is suffering from slight dehydration even though her Blood Gas told otherwise and the CAT Scan showed no Neurological declination/pressure, but it did show a Severe Sinus Infection, which indeed can cause Payten's Neurological issues to become worse and more pronounced. Which was causing her to have a worsening in seizure activity, etc. But now that she has started medication and IV fluids, she is doing better. The only thing she is having trouble with now is Diarrhea and Retching while eating, so GI will be called tomorrow to come in and check on her. They also sent some stool off for cultures to see if she has a GI infection of some kind on top of everything else.

It is CRAZY to me how something so simple as a sinus infection, slight dehydration, and a stomach bug could cause such issues to the point of thinking we could lose her, but it can and that is why it is so scary when these children get sick, because we never know when it will be the "ONE" that will take their life.

Thank you all for your prayers, love and support. I know this was a factor in Payten getting well. Now it will just take time and rest for her to get back to her baseline. Therefore we may be here for a short time longer. But at least things are looking up!!!! It is a relief from yesterday, because today I feel like my voice has been heard and that would make any mommy happy!

Payten's Hospital Update! So frustrating!

I am so frustrated I could SCREAM! I feel that no one is hearing me or seeing what I am seeing! The EEG came back normal! Blood Gases are normal! Blood work normal! Cultures normal! So what does this tell us? Blood Gases tell us that she is not dehydrated, she is not being over ventilated, and she is not fighting infection! Normal cultures = not respiratory, she does not have anything going on in the lungs. Blood work shows no infections as well. And last but not least, EEG being normal means no Seizures!

I think their full of CRAP! Yes, the EEG might have been normal, but I still believe that all of this is partially being caused by seizures, you look at her and you can tell she is seizing by her episodes of blank stares and the twitching spells, arrrgh! I could scream! We are awaiting CAT SCAN results, to determine if she is having some kind of pressure on the brain or some trauma of some kind in the brain. But for now they are kind of blowing it off as nothing or rather that is how I am feeling!

It is not nothing PEOPLE! My child is not functioning! She is sleeping all the time or trying to! (If you call thrashing around in your sleep like you are in pain, sleeping!) And when she is awake, she looks like she has been heavily medicated! She can't tolerate her feeds without Retching and she is choking on her saliva! Now tell me that is normal! Because I don't think so! The Neurologist that is on call tells me, "Well we just need to give it time, she is just tired and we have to be patient. Mom at least she is still waking up! Yes I understand she may be sleeping all the time, but she is moving in her sleep and is kind of responding to you when you tap her (yah in a drug coma state!). So I am not worried, she looks great from a Neuro stand point!"

Oh believe me it took everything for me not to lose it on her and I think she could tell too! Now they are trying to tell me that it is just a symptom of her diagnosis and they might not be able to do anything about it and because it is such a rare disease they can't tell us anything more. You know how I take this, we don't know what's wrong and we don't have time to figure it out and so we are going to do what is easy and blame it on her diagnosis' to shut the parents up and leave it at that!

All I have to say is my child is not alright and I have every right to worry and want answers! I am so lost right now! My gut is telling me there is something seriously wrong, but I feel like I am the only one seeing it! Maybe I just need sleep, something to eat and a little patience! Maybe just maybe after this, I will have a different perspective, but as for now I am one irate momma!!!!!!

I know God Answers Prayers!

As I sit here overcome by emotion. I can not help but feel over whelming joy, for this I know, God answers Prayers. Early this afternoon, Payten was admitted to the ICU at Cardon's Children's Medical Center and Honestly, I have no idea what it was for, all I know is something was and is seriously wrong with my child. They think it is Neurological as do I. We think that it is a Neurological Declination. And to be quite honest with you, I am scared. I am horrified. The last time I was this scared was way back when Payten was first put in the PICU for Respiratory Failure/Congestive Heart Failure. I thought we were going to lose her tonight. Maybe not tonight, but in the near future and we still could.

Let me explain why I am over come with Joy. Since Wednesday, as I explained in my previous post, Payten has not been herself. She has been irritable, lethargic, unresponsive at times, sleeping for most of her time and when awake she has seemed to be drugged to the point of a complete blank state. She has not been her normal happy self. We have missed her smile, we have missed that sweet, beautiful twinkle in her eye, we have missed Payten's little Spirit. And each day it has seemed to get harder and harder to keep her awake/wake her up, it has kind of felt like a shell of a body with no Payten at times and then other times she is agitated and in pain .

So today while in the hospital, I was overcome with this fear and realization that I could lose my child, she was at her worst, she was in and out of consciousness and it appeared that her little self was not there and might not ever be there again and that is a horrifying feeling. Knowing that you may never see your baby smile, laugh, cry, or look at you and really know who you are again is terrifying. It brought back every emotion I ever felt back when Payten was 2 months of age. I finally left the hospital around 7ish to go home and shower and as I got to my car, I was overcome with pain. I could not hold it in any longer, the crying had overtaken me. As I walked in the door of my home, the only thing I could do was drop to my knees and plead with my Father in Heaven.

A Plead that I would be able to handle whatever came my way. A Plead that Payten would have the pain taken away. A Plead that God's will would be done, but that I could emotionally and physically get through whatever that will might be. I talked with him and told him my fears and how I did not want to lose my child, but that if it meant pain and suffering then I understood and wanted her to face it no more. I ended with one request. A request that she would Smile for me one last time, that she would look me in the eye and know who I was and that I loved her. That I could say goodbye before she went home, that she would wake for a short time, so I could tell her I loved her.

This morning at 2:30 am, she did just that! She woke up! She looked more alert than I have ever seen her look in the past three days! And she SMILED! Oh what a glorious Smile it was! I started to cry and the nurse with pain in her eyes told me that she could only imagine the relief I felt to see her arouse and stay awake. Let's hope that this means she will get better and that we will have her for a little while longer. That the Neurological issues she is facing will be found and be treatable for the time being. I hope that she will find an end to her pain or suffering, if in fact she in experiencing that. Let's hope that she did not stay here out of selfish desires, but rather that she still has a little more life to live and more things to accomplish, because to be quite honest, I am not ready to give up that beautiful smile. Will I ever be? Probably not. But if I am given the gift of more time, I will cherish it. But if I am not and she does go home soon, due to this Neurological Declination, then she leaves me knowing that I have a Father in Heaven who loves me, who knows me and who hears me and answers my prayers!

After seeing her this morning awake and smiling, I have peace that she will overcome this illness whatever it maybe and be here for a while longer. Again I hope that it was not out of selfish desire that she stays, but rather that she still has a little more life to live and that it is lived with little pain and suffering, because I do not want her to experience that. But I know that if she does leave us soon, I will be forever grateful for the lesson I learned this day and the love I felt from my Heavenly Father. Let's hope we get answers as to why Payten is here and that Payten will get better and come home soon. And if it happens not, then we know that it was her turn to go home and I pray that when that time comes I will be ready and okay to handle it. Please pray for our Payten and for us. We love you all! We will keep you posted as to what is going on and we hope that you all have a Good Day!

This Balancing Act called Life!

I am so excited and touched! I found out that more people read my blog than I thought and that makes me Smile! I was told by a few people that they really enjoy reading my words and to that I say thank you! It makes me feel so good to know that people are reading this! Because not only is this a great outlet for me and a great way to keep a journal, but also I want to help touch others by sharing my life experiences, so I am grateful that I am able to do this!

Today has been one of those challenging non-productive days. Payten has fussed and cried all day. I do not know why, she just has! She has either been fussy or in a daze and I am a little worried. But in all reality, there is not allot I can do. All I can do is keep a close eye on her. I have sat and held her for most of my day. It has been hard for me to do this! Do not get me wrong, I love spending time with my daughter and holding her and playing with her, but it is hard for me to do JUST this! I like a clean home and I feel that when I just sit and hold and play all day nothing gets done! I want to feel like I accomplished something and this just makes me feel lazy, ( just like when I get on face book!!!!) LOL! Why I feel this way, I don't know or understand! I shouldn't! I am a Mom and this is what Moms should do, enjoy their children!

Again, don't get me wrong, I enjoy my kids! I enjoy playing with them! I just sometimes feel like there is other things I should be doing. I need to realize that it is okay to just sit and hold your baby! Payten needed me today, more than my floors, laundry, dishes, etc. That perfect balance is so hard to find. You know, that balance between playing with your kids and everything else a Mom has to do! But every ones perfect balance is different. Different things and different ways work differently for different people! Somethings work better than others; I just need to figure out what works for me and what doesn't!

You would think by now, I would be a pro at this balancing thing, but I am not! I struggle daily with it! Some days are better than others! It is an accomplishment if I have a clean home, dinner cooked, home therapy with Payten done and playtime with the kiddos accomplished. I truly wish there was more time during the day! But I believe everyone has had that wish once in their lifetime. Summer does not make it any easier! It actually seems to be even harder! I can not seem to get my act together! How do parents do it? Summer classes, swim lessons, dance, sports, play dates with friends, etc. and still have time for everything else on Mom's to do list! I find it more challenging everyday! I feel that my two older children get put on the back burner and I don't know how to change that? I try so hard to do my best, but I feel like I am failing. Maybe I am trying to hard. Maybe I need to simplify things. I wish I had all the answers and more control over my life! (If you haven't noticed I am a control freak!) But that is one of life's challenges/lessons, no one has control over everything or answers to everything! You have to learn to be satisfied with what you are given or it is just going to drive you insane!

So I have decided to write down some goals! After taking some time to think about this balancing act I am trying to achieve, I thought Payten has goals, Zach and Makenna have goals, so why not Mom! Goals are a good place to start! They will help me to see what will work and what won't! So here it goes!

I am going to Smile more - I need to be less hard on myself! I need to realize that I am not super woman and I can not do it all and that is okay! And through Smiling about life's challenges will help me do this!!!

I need to relax more, my kids are more happy when I am not stressed out!

I am not going to let the little things bother me! It is okay if my house is not perfect everyday, I have 3 children and they need me more! If my house is clean 3 times a week and dinner cooked I am doing good! ;)

Early to bed, Early to Rise! Makes a Man healthy, wealthy and wise! Rest is the key to a productive day, so that is what I am going to try and do! Maybe if I can get up before the rest of them I can get things done before they start to make more messes!

I will choose 2 things from each therapy session (Feeding, Occupational, and Physical) to work on each day with Payten! I love going to Payten's different Therapy sessions! It amazes me how much there is to learn! I feel like there is so much out there that can help Payten to become more successful. I know it is through these therapy's that success will happen! I have been blessed to have some of the best therapist work with Payten and me! So I need to be better and do my part at home in accomplishing her goals! Payten is so ready and willing, I need to make the time and I do! I just need to simplify it a little bit so that I am not beating myself up each day for not accomplishing every goal on her list!!!!! A few are better than none!!!!

I will use my time more wisely! I will play with Payten while awake and then when she is napping use that time to do other things such as playing with Zach and Makenna, etc.!!!!

I need to worry less and enjoy more! I need to have fun! Life is too short to be stressed out all the time! Life is to be Enjoyed, Not just Endured! And I need to live like that!!!!

I will take a time out for me and not feel guilty! Everyone needs a time out once in a while without feeling guilty! It doesn't have to be often, but I do need to take that ME time!


These are my goals for now! I know that I will not be able to accomplish all of them at once! It will take baby steps to achieve them, but at least I will try! It will not happen over night and that is okay, as long as it happens one day! Lets hope that I will eventually get this balancing act called life down and that I quit stressing out about it so much! I love my kids and I want to be the best Mom I can be. I know my kids are affected by my stress level and I want to them to grow up having a fun childhood, where they feel happy and loved; rather than them feeling that their mom had no time. Here's to new goals and new days!!!!! I need to keep telling myself I don't have to be super-mom to be a good mom, I just need to be ME and do my best!!!! Good Day and Good night! Payten is up from her nap and so I have got to run!!!!!