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!!!!!

Payten's New Type of Seizure!

Today has been a somewhat hard day. Payten worried me all day because before I left to go and run errands while the Nurse stayed with Payten, P. starting Wretching really bad, to the point of choking. And it broke my heart to see her do this, I know that when she does this, it causes her discomfort and pain and I so badly want to take it away and make it better for her, but I can't. It truly is one of the hardest things I have to deal with. I worried about her the whole time I was gone. It broke my heart to be away from her, I always feel so horrible when I leave her. I know she is in good hands, but I still can not help feeling bad that I am leaving my daughter to go and do other things, it truly breaks my heart. I love her so much. I want to be with her every minute of everyday that I possibly can! I know her days are numbered and so therefore they are extremely precious to me. Once I got home from running errands, she seemed to be doing somewhat better, she wasn't wretching anymore which was a plus and a weight lifted off my shoulders, but she still seemed not well to me, she was extremely tired/out of it and looked kind of pale, so when the nurse left, I hooked up Payten's feed and sat with her, singing and rocking her, trying to get her to sleep. After a little while, she finally started to drift off to sleep. Then all of a sudden, right after I laid her down, she started twitching on the right side and the right side of her face totally went droopy and paralyzed. It scared me, I thought that she had experienced a stroke of some kind. I called the Neurologist shortly after it happened and he informed that everything was okay, that she had just experienced a type of seizure that paralyzes the face for a short time and that she would be back to normal in the next 24 to 48 hours. But he was concerned because it seems her seizures are getting worse and he does not understand why. I hope that this does not keep happening and that her seizures do not keep progressively getting worse, because I do not want her to have to experience this pain that she is being faced with. I just pray that the medication will work and stop the seizures. She on top of everything else is still sick with a respiratory infection of some kind, I think this along with everything else, might be causing her discomfort and pain, so I pray that she gets better soon and will be able to sleep! My heart truly grieves for my child I can not express the pain and heartache I feel; I want so badly to be able to take this all away and have her not be sick all the time and I can't! This is the hardest test I will ever have to face in this life. Please we need your prayers now more than ever! Thank you, God bless and Goodnight!

I am Honored Daily to Say, She's With Me! I love you Payten!

I wanted to share a song that I recently came across that Collin Raye wrote for his Granddaughter Haley, who suffered from an Undiagnosed Neurological Disorder. Her whole life was a struggle, but a blessing that her family cherished everyday, she finally lost her life to this illness this past April. This song sums up Every word and Every emotion that I have ever felt about my Payten. Collin Raye was truly inspired when he wrote this song for his granddaughter, he truly expressed every emotion that every parent has ever felt, who has been faced with a blessing like this. Thank you Collin Raye for these words! I call this Payten's Song:

She's with me

I proudly tell the Maitre de as we arrive

He seems surprised

In a clumsy moment as he looks for room, for her blessed chair

A table stares, and their eyes show only pity

As they try to sympathize

Oh, how difficult that must be, look away

Day after day, they'll never see, the joy you bring

Only happy at the times I know that she's with me.

I wear it like a badge of honor at the mall

I hear her call, the only way that she is able with a cry

Time to go bye bye, she can't say why

Maybe tired, maybe hurting, God I wish that I could tell

Do I ever make her happy for awhile

To see her smile, makes my week,

Though she can't speak,

She let's me know she feels my love when she's with me.

I know just what heaven looks like when I see that perfect face

For no other mortal heart could be so fair

I myself so weak and weary, so imperfect as a man

How could I be the one you chose to care for our girl

Never done a single deed to earn the right to share her light

Though it's such a painful road we walk each day

Lord you have your ways, this I pray

On the day I stand before you, she'll stand right by my side

When you look upon me, head hung down in shame

I'll feel the blame, she'll look at me,

And then she'll speak, in that precious voice

Don't worry about him my Lord, cuz you see,

He's with me!

How truly inspirational these words Collin Raye sings! It is my day everyday! I get the pity looks and then they look away. Every where I go, I get the stares, but no one will ever know the joy I feel! I love going to Church, but that is the one thing I dread, the looks and stares of pity I am given by those who know me, and then they quickly look away because they don't know what to say, It truly breaks my heart each week I am able to attend because allot of us use to be close and now things go unsaid because they don't know how to react toward me. And it truly hurts inside because I do not pity what I have been given, but rather I Cherish my Daughter's life! It is a BEAUTIFUL and PRECIOUS Gift that has been bestowed upon me! And I know they mean no harm, but rather it is their way of showing love, but it still hurts because I don't want Payten to be seen differently, I want people to see what I see, A Heavenly Being! Payten has taught me more than anyone ever could about Love, Endurance, Patience, Understanding, Happiness, People and God and to that I truly do stand HONORED to be able to say SHE'S WITH ME! The line where it says "I hear her call, the only way that she is able, with a cry", is my Payten. Payten can not express herself but only through a cry or a smile and so I wonder daily what she is thinking, what she is feeling, what truly is going on in that little head of hers. Is she in pain? Is she tired? Do I make her happy? These are questions I ask myself daily and I can not wait until the day, that she will be able say, Mom I love you and thank you for loving me! And that will probably never happen in this life, but it will happen, I just have to be a little more patient then most parents and wait until the life here after to hear those precious words. But when it does come, that will be my reward and it will be far greater than any reward I could ever receive in Heaven, because then I will know that I fulfilled my mission and helped make Payten's life better by being her Mother. I do know what Heaven looks like, because I have a little piece of heaven in my home, Payten! And I know that she can see God's face and is in his presence daily, And I ask what did I do to deserve her. Why me? How did I get be so lucky to have this Perfect Angel to Light my Path daily? I may never know the answer to that question until the day I can converse with her and Ask, Payten why did you pick me, and then I pray that she will she look at the Lord and say, Don't worry, Lord, She's with me! I love my Payten, and I pray daily that she will be okay and not experience pain, but no matter what, I am blessed and Honored to say, SHE'S WITH ME!

Payten Update!

We saw Dr. Panesar today for a follow up. There we discussed Payten's new diagnosis's GTP Cyclohydrolase Deficiency and how that affects Payten. We also discussed Payten's sleep deprivation and irregularity and what that could be from. We talked about her secretions and how we are having to suction her a lot lately and how they are really think and stringy. We discussed her ventilator and about getting her a new vent that would ventilate her better. From our discussion, it was determined that Payten has a respiratory infection of some kind and that is why she has the increased secretions and is in need of suctioning so much. Dr. Panesar put her on a couple of meds. and increased her albuterol treatments to 2/3 times a day along with her CPT Vest treatments. He said he has no idea what would be causing the sleeping issues, he thinks it is Neuro related and has ordered a sleep study to be done again to see if there is more extensive seizure activity or something else related to the brain, that is causing her to not be able to sleep. Let's hope it will help in giving us answers, so that we may all sleep again soon!!! Also, when we go into the hospital in a few weeks, Dr. Panesar will order her new Ventilator and do some trials on it there, so that we can get the settings right and not have to worry about it when we get home! Yay! Maybe this one will be more portable! All in all it was a good visit, we still have some unanswered questions, but hopefully with the things that are going to be happening in the near future we will get those answers! Payten is doing okay even though she is sick, she is still her happy little self! Thank you all for your love and support. Good night!

The Lord works in Small and Simple Ways!

I find it interesting how the Lord works in small and simple ways. And I love how he is able to take those small and simple things and use them to humble us and bring us back to the realization of our blessings. As you read in my previous post, I did not have a good night yesterday. I was angry and sad and just plain emotionally drained. I started to feel sorry for myself and Payten. And then I came upon a story about a 7 yr. old little boy, who came to Arizona from Idaho for a Very Extensive Facial Surgery. He has had 13 surgeries from the time he was 5 months ( I thought Payten had a lot, she has only had 5!) He suffers from a rare genetic disorder that only effects 1 in 20,000,000. What occurs is the bones fuse together and quit growing which causes extreme facial abnormalities and so today he underwent surgery on his face where they opened his face and broke all the bones and reconstructed them together, so that his face would grow normally. This is a very invasive surgery that could be fatal if they make a mistake. And his parents still were so willing and so strong, instead of complaining and feeling sorry for themselves, they stood by their son and comforted him and told him that it would be okay! Even though they knew the risks, they remained strong and became their sons Unsung Hero. And they did it because they knew what it could do for their son, because if it all goes as planned, it will change his life forever! After reading this I thought, who am I to complain about my life. Yes, my daughter has her problems, but she has never had to face a surgery so extreme. It made me realize how blessed I am and that things could be so much worse. Through this simple story, it has taught me a great lesson, it taught me to appreciate my life and my blessings, it taught me that I am not alone in this struggle, there are people out there that are experiencing what I am experiencing and others who are experiencing much worse. So to all of you out there, I say thank you, Thank you for your example, Thank you for your strength, Thank you for your faith, and Thank you for your endurance, because through you and your examples I learn so much and am truly humbled! Thank you Heavenly Father for your small and simple lessons! My prayers go out to the Petersen Family and their son Cayden, I hope that their life is forever changed and that the surgery goes well! What HEROES those parents are! This just makes my belief in the saying, The Lord does not give you any trial you can not handle, even stronger and to that I say thank you!

A Challenging/Sleepless Night.

I just want to sit and Cry! I am so exhaustively tired, I did not sleep last night, I am emotionally stressed and my heart is breaking for my daughter! Payten did not fall asleep til 10:30 last night, she slept until Midnight and has been up ever since. She is so tired, but her little body will just not stop moving and she has no control over it. Joseph and I took turns trying to help her, but nothing seems to help! She will start to relax and then her little body starts going again! What do you do? How you do help her? We have a weighted blanket, but she is unable to keep it on, due to her uncontrolled movements. She is in constant motion and crying because she is so exhausted, but she simply can't stop moving! And I am emotionally drained, I can't see straight! Joseph and I got into another Argument because we are both so tired and stressed! I can't stop crying, I just want sleep and I want my daughter to be able to sleep. This has been going on for a month now, that she is up all night, restless, and does not make up for it during the day! Heavenly Father, Please help us, Please let us sleep! Joseph, I and Payten can not keep going like this, we need help! I pray that Dr. Panesar today will have an answer as to something we can try or use to help Payten relax and be able to sleep. Because I can not take seeing her like this! Eventually later today she will pass out for a couple of hours, but then it will be too late for me to sleep because I have two other children to take care of! Why is life so challenging at times! I just wish that it could be simple at times, but we all have challenges that we have to face and this just happens to be mine and as the saying goes, We are not given anything in this life that we can not handle, so I guess I just need to have faith that it will all work out and Joseph, I and Payten will get the sleep we need at some point and that her body will be able to calm. It just breaks my heart. I want to help her so badly and I can't, I feel so lost and helpless. And as I sit here and cry, all I can think about, is that I need to talk to someone and that someone happens to be my computer! Thank you computer for listening!

Joseph's and Mine's Breakdown/Breakthrough!

Tonight has been a hard night! Why is it that when you are faced with NEW Information, your brain goes into overload and it makes you so exhausted? I wish it didn't give me a headache every time I receive new information about Payten. It is so hard and frustrating! I feel like I am going to medical school to become a Neurologist, but in the end I am not going to reap the benefits of being paid! I mean don't get me wrong I am reaping the benefits of knowledge, but I wish it were easier to understand and absorb. Wikipedia has become a close friend of mine! There I can research and receive definitions to all the Medical Terms that are gibberish to me! With just a click of a button I get a definition, it is nice, I just hope that it is correct information I am getting! Because I can not take it if I have to reprocess any miss information that I may receive. I hate the fact that after receiving a New Diagnosis or information of any kind, it totally and completely consumes you, it is ALL you think about, it takes over your life! No matter how hard you try it stop it from happening, it happens. How do you not allow that to happen? How do you stop it from taking over? I wish I could figure out the answers to these questions because I think people seriously get tried of being around me because this is all I talk about! I also hate the stress that follows and the fights that are had because of it. Tonight is a prime example of this, Joseph and I got into a huge fight, because we are scared and stressed. I hate fighting with him, I wish it didn't happen, but it seems unavoidable during these times! Tonight, Joseph finally had his Breakdown and he kind of took it out on me. And then I took it out on him, I hate when this happens, but it really does seem like it is unavoidable. I feel like if we don't express are anger, then we will go CRAZY! At least afterwards we come to terms and apologize to one another and can rationally talk about our feelings and cry and laugh together and lean on each other for support. It is just the process prior to this that really stinks, the break down and the fight! But at least once that happens it is over and done with and we can move on! And I am happy to say that tonight we got everything out! We cried, we yelled, we laughed and then we understood each other, it is really nice to be on the same page and know how scared we both are and what we are both feeling and going through. We know that we are not alone, but that we have each other and that is huge. If I didn't have Joseph I would be lost in all of this! All I can say is I am scared. Joseph is scared. Payten's future is completely unknown and we are completely terrified and that is okay, we just needed to express ourselves and get it out, and it just happened to be through screaming and crying at one another that we did this! But now we are good and happy and know that we love one another! I just hope that soon we will receive more answers, so that both Joseph's and mine's headache will away and that our brain's will re cooperate from all this overload! It does help for the both of us to take a time out at night and be alone to just mediate and pray. It is relaxing to the soul and it helps us to sleep! So I am off to Mediate and then go to bed! Good night! Oh and just so you know, Payten had a really good day! She was happy and playful and she went to sleep well! Let's hope her slumber is restful and that tomorrow brings another good and happy day! We see Dr. Panesar (Our Pulmonologist) tomorrow, let's hope it is good news and that we leave there with questions answered!

New A Day!

So after blogging last night, Joseph and I had a long talk and then like I always do, I stayed up to just sit in peace and quiet, to ponder and prayer. Joseph and I are both at peace with all of this. We know our Neurologist and we trust his decision, he is an extremely cautious man, who if it were a high risk for Payten getting a Fatal Muscle Disease from the medication, he would not even discuss it and besides it is still available to the public. It is not a prescription anymore, because they pulled off prescription shelves, but it is a supplement that we can buy at any health food store, so we just have to believe and take a leap of faith that it will all be okay. I went to bed with a Peaceful heart. After really thinking about, I thought why am I so upset? I came to the conclusion a long time ago, that whatever Payten had, would someday probably take her life, but that I would never give up on her, I would always try and fight for her to have the best quality of life a child like her could have. I guess now that it is more of a Fact and not just a conclusion, that it indeed is another thing that is right in front of me, was hard to see and take in. I guess I need a little emotional break down in order to see the positive side. Right! So after a good nights sleep of no nightmares! Yay! I have decided it is a new day, full of hope, and I am going to enjoy it! I will make the best of what I have and try not to complain! I think it is okay for us mom's and dad's out there, who are the parents of these special angel's, to complain every once in a while. I think it is healthy, it helps you not to have a Nervous Breakdown! So complain as much as you want, for me I will keep it to a minimum! Or at least try too! Our Nurse comes today and I am going to take my other two and go Play! Thanks to a good friend who knows I need to play and not think about Payten! I am very blessed to have good friends who are there for me when I need them.
Once I am done playing I will come home and I will play and cuddle with my Payten and enjoy her! She is the funniest baby and I love playing with her! So here's to a new day! Yay!

A Not So Good Day!

I have started to measure the success of my days, by whether or not I cry during or at the end of my day! Most days end unsuccessful! And today was one of them! I woke up at 5:30 am, so that I could get ready, get all three Kids ready and load the car up with all of Payten's equipment before 8:30 so that we could make it to Physical Therapy on time! It was a challenge, but we made it.

P.T. went really well. Payten was engaged. She played and worked hard. She did new things and showed a lot of progress! I was happy to say the least! Then we had a Neurology appointment! There we recieved the test results of Payten's last Spinal Tap, which showed new findings that revealed an additional diagnosis. The New Diagnosis is GTP Cyclohydrolase Deficiency in the autosomal dominant form. This is the cause of her Cerebal Folate Deficiency and could be the cause of everything else.

It was a bitter sweet moment. Here I recieved what I had been waiting for, for sometime, but was it what I wanted to hear, NO! Was I ready for it? NO! The Neurologist explained to me again that we are dealing with a very rare deficiency and that he is not very knowledgable in it and so we would both be learning at the same time! We talked about the affects GTPCD Causes.
And it varies from case to case. It is another wait and see diagnosis. It can cause Severe Mental Retardation, just like the CFD can, uncontrolled muscle movement which can progressively worsen over time, frequent episodes of hyperthermia without infection, convulsions, Hypotonia and Hypertonia, Seizures, and much more!

Does medication help? Sometimes! Again it varies from case to case. There are only three medication that can be used to treat this and they have to be used together inorder for it to work and not have drastic side affects. But one of the medications has a possible side affect that is life threatening. It does not happen in all cases, but it does happen. Some people after taking the medication have been diagnosed with a Musclar Disease that has no cure and eventually kills them. But there is nothing else we can use. These three Medications are the only meds. that treat GTPCD. So Joseph and I have a tough decision ahead of us.

We also talked about Retts Syndrome and how he thinks Payten is suffering from that as well, which also causes Severe Mental Retardation, Respitory Complications, Sleep Apnea and eventually loss of usage in the hand.

Now, like I said before Joseph and I have a tough decision of whether or not we will go through with the plan and start Payten on the medication. The plan for now is to Admit Payten to the PICU, perform a Phenylalanine test, which will determine how much medication she will need and start medication trials. And while there do a DNA test for Retts Syndrome.

This was alot of information to take in, especially in the hour that I was there. I left felling scared, alone and hopeless! I sat in my car and cried. How could I possibly decide? What was the right choice? Is there a right choice? On one hand my daughter suffers from two deficiency's that affect the brain and could eventually kill her if not treated. And then on the other hand, she could possibly get a Fatal Muscular Disease from the medication that would take her life anyways! No parent should ever have to make a choice like this, and I do!

Once I got home, I did some research and there I read about a little girl, who was reported to be BH4-Dependent Hyperphenylalaninemia due to GTPCD. She developed feeding problems, poor sucking, and poor muscle tone in the first week of life, and later showed delayed development. By the age of 2 years, she was unable to walk and developed seizures and choreoathetosis (uncontrollable movement). She died at the age of 10.

When I read this I started sobbing, this describes Payten to a Tee! So after much thought and talking with Joseph, we are leaning towards going ahead and trying the medication. Either way we can't lose. And I could not live with myself if I did not try. There is a chance that my child could slightly improve and Darn it I am going to take that chance and hope that it turns out well! How do you remain hopeful when you keep getting news like this! I guess through alot of prayer and faith.

So I guess in the next few days Joseph and I have a lot of praying to do inorder to make a life changing decision for Payten. But we are Greatly leaning toward treating Payten with the Medication.

Also at the appointment we found that Payten's Seizures are worsening and so she was put on a stronger dose of Keppra, let hope that helps. Lets Hope that everything helps and Payten will have some chance at life! And so ends my day! Good night!

About me and my blog!!!!!

Hello Everyone! My name is Kimberly Merrill and I am new to the Blogging World and everything in it! But I am so excited to jump in and get started! First off I wanted to introduce myself, let you know who I am and why I started my blog, Payten's Corner. I am a young wife and mother of three beautiful children. While growing up I can remember that all I wanted in life was to be a wife and mother. I loved children! I can remember my heart always going out toward those children with special needs. I was drawn to them, I felt like I understood them and I always wanted to help them. When I was in Junior High and High School, I worked very closely with children with disablities, autism, etc. It was a passion of mine! I remember always thinking what Marvelous Parents these kids were blessed to have. How strong their parents must have been to beable to endure what they had to endure. I thought what amazing Heroes they were in their child's life and how I could never be that parent, I could never endure what that parent had to endure. I remember always questioning how they did it. In no way did I know that I would be proven wrong someday! When I met my future husband Joseph, I saw the realization of the dream of becoming a wife and mother coming true. I guess you could say I was living the American Dream! I had a wonderful husband, who had a good job, a nice home that was large enough for a family to grow comfortably in and two very healthy children. The only thing I had to really deal with was Colic and a few ear infections now and then, but nothing major. You could say I was kind of spoiled! When I became pregnant with our third child we were so ecstatic! We had waited so long and were so excited that it was finally coming to be! I had a normal pregnancy that progressed to what I thought would be an easy delivery; my first two births had been great and so I had no concerns whatsoever. Little did I know that the night I went into labor with Payten, would change my life forever! Our little Payten Isabella came into the world with slight problems that we hoped would be easily solved. That was not to be the case. Since her birth 20 months ago, Our American Dream has started to crumble. It seemed our little girl was not going to get better, but that it would be quite the opposite. We have faced emotional, physical, and financial hardships that I never saw coming. I honestly can say, that had you asked me 2 years ago if I could be the Mother of a child like Payten, I would have told you No! I would have probably said like I did before as a young teenager, That there was no way I could be the HERO those Parents are! Oh how wrong I was! I am here to tell you that the saying is true, The Lord does not give you trials that you can not handle. It has been hard and not only on me, but everyone in my family. My husband has had to bare not only the worry of providing for a family of 5, but also the stress that comes along with having a child like Payten and how he is going to provide everything she needs. And our other two children, Zachary (7) and Makenna (4) have gone through so much as well. Being Shuffled from Home to Home, so that I could be at the hospital with Payten and fear of not knowing what is happening, has been very difficult to see. At times I have felt my heart breaking for them. I really do not know how I have been able to do it, all I can say is that I could not have done it without the help of my friends and family and to you, I say Thank You! Yes, it has been hard, I have cried, I have yelled, I have asked myself many times, why my family, why Payten? But with all of this I have never questioned why me? I know that this was my mission and to that I have given thanks for this angel that I have been blessed to care for. Payten is so very special; everyone who meets her can feel it. I am blessed to be her mother and call her my daughter. I guess the reason that I am writing this blog is for both myself and others. That it may be a therapy and a realease of stress for me, and that in some small way I can help even one parent of a special needs child who may feel inadequate, know that they are not alone, that they are more than adequate, they are unsung Heroes! Our job is not easy, in fact, it is EXTREMELY hard! But nothing worthwhile ever was easy. As the saying goes, "IT IS THE TOUGHEST JOB YOU WILL EVER LOVE!" Nothing is more Worthwhile! I look forward to writing each day or as often as my life allows me too! Please understand that I hope you will feel and understand what I am trying to portray. I hope you laugh with me, cry with me, get frustrated with me and feel joy with me! Before Payten, I was the type of Mom that was always on the go. I was involved in EVERYTHING! You could say that I was your typical Social Butterfly! But since Payten that has changed! I have become more serious, I looked at life in a whole new light. I do not take anything for granted. I am more aware of life's challenges and have kind of inverted into my own little world. I do not have as many friends as I use to, the friends I do have I do not see very often, I pretty much keep to myself. My Doctors, Therapist, and Nurses have become my friends and so I hope this blog will help me to come out of my shell and regain that social aspect of my life that use to play such a big part! I hope that I can make friends and help others truly understand that they are not alone in this Journey called PARENTHOOD! So here's to you, The unsung Heroes in the lives of these SPECIAL ANGEL'S, the Mom's and Dad's out there! Let's lean on each other for support and together we'll get through this journey! There is HOPE; we just have to believe in it!