Finally our Sweet Payter Tater is coming back to us!

Everybody deserves a day to just kickback, relax and not follow a routine, rather go with the flow of what the day brings! A week ago, Zach and Makenna, had one of these types of days and as you can tell by the above picture of Emmett, today was Emmett and Payten's day to relax, kickback and just enjoy the day away. Honestly, I don't know what encouraged me to come to this decision today, but I am thankful I did. When I woke up, I had a strong feeling that I needed to take a step back and cancel therapies today and spend time with Emmett and Payten, and just focused on them and nothing else and that is what I did, for the most part at least. It helped that Payten had a slight fever. It made me feel like we were not totally blowing off therapies, but in all actuality that is what we did. I think at times Joseph and I get caught up in doing the everyday needs of Payten, that we sometimes forget to just relax and enjoy the moment with her. So, just like it was important for Zach and Makenna to have a fun day, it was just as important for Emmett and Payten to have one those days too. This picture says it all. Just looking at her sweet face tells me I made the right choice,

this picture melts my heart, for this is pure joy in her eyes! Joy I have not seen in a few months. I know that Payten needs therapies and I know today would have been a great day for her at therapy, but I have not had a day like this in long while with her and so to me it was more important to have this time together, than it was to do therapies. This is the Payten I have been missing and yearning so desperately to see. I am so thankful that she is coming back to us. Each day seems to be getting better. I am really hopeful that by the end of October break we will be in a good enough place to say yes to Payten attending school. School is something that I have prayed for her to be able to do. I know that school is going to be a good thing for her, for it will open up opportunities I can not give her at home, such as socializing with kids her age, etc. It makes my heart happy to think we are getting back to a good place with Payten and are seeing her happy little self again.

She is still sleeping quite a bit, which is still hard to see and deal with. Therefore, Joseph and I are going to try an experiment on Payten this week. We are going to change the times that we give her medications. For those of you who do not know, Joseph gets up for work at 2am everyday, so we thought that he could give her morning dose of medication at 2am and then I could give her nightly dose at 3pm, in hopes that she will sleep during more opportune times and be awake during more opportune times! I guess we will see what this experiment brings, if it turns out to be a good thing, then we will continue doing it, if it doesn't help or we see more seizure activity, etc. we will stop and go back to how we have been doing it her entire life. Honestly, it is a win, win, for we will just be assuring ourselves that we are doing everything that we can possibly think to do. But honestly, if things keep going the way they are going, I will be happy, for Payten is doing amazing, considering where she was a week ago. I am excited to see what the Doctor in Utah can do for us, because I truly believe she is going to open up doors of possibility for Payten that we did not know existed, so I can't wait to see what she has to say regards to our sweet Payten.  No, we do not have an appointment yet, but we will have one soon and I seriously can't wait, for I have a really good feeling about this Doctor.

These past few days have been difficult, for Joseph has either been working or serving someone in need. Saturday and Today, were the hardest, because Joseph did not get home until almost 7 at night and he had worked both days, meaning his day started at 2am and I did not see him until 7. I am not going to lie, I kind of sucked, but I know he was where he was suppose to be. For that is what this life is all about, serving and helping others, so I am grateful that my husband is willing and able to help when there is a need and I am thankful that I can be patient and allow him to do so. Because by my willingness to give up time with and help from him, I am ultimately serving those people and well and that makes my heart happy, for I love to help others! Even if there are moments I want to call screaming, COME HOME! I NEED YOU! I try really hard to refrain from doing so and instead I try and repeat in my head, When ye are in the service of your fellow man, ye are in the service of your God! And that seems to help put things back into perspective. But with that said, I am quite grateful that the service we are rendering right now, is coming to an end and Joseph will be home at a more reasonable hour in the days to come. Because I am ready to have my husband back!!!!!!

Though the days have been long and grueling, due to the lack of help from Joseph, Zachary and Makenna have surprised me. They have been so great these past few days! I can not tell you how helpful they have been these. It seriously amazes me, when I think about how awesome they have been. Zachary, helped by cleaning and playing with all the kids. If Payten needed something, he was right there, helping her with whatever she needed. He kept Makenna and Emmett entertained and helped me whenever I asked without complaints. Makenna was Emmett's little Mommy over the weekend and tonight. She helped change diapers and cleaned up Emmett's messes when the time called for her to do so. Seriously, it was like a light bulb went off in their little heads, that said, "Hey, Mom is doing a lot and Dad is not here to help, therefore we need to step up and take Dad's spot and help."~ As grateful I am for this light bulb, I am wondering what the heck took so long for this light bulb to go off in my children's heads?! For I could have used this type of help months ago! But I will take it as it comes and be grateful that they rendered the help they did.

Here is a picture of Zach with Emmett tonight. This was taken while I was getting dinner ready. Zachary made sure Emmett was entertained so I could focus on getting dinner on the table, because even though life has been more stressful without the husband around, dinner is something that I feel is super important for a family to share together and so I strive to make it happen, even on nights like these! Now, let's be real for a moment, dinner together as a family, does not always workout, but I try to do what I can to make it possible, so I am truly grateful that Zachary and Makenna, render the help they did, in keeping Emmett and Payten entertained, while I got dinner on the table,

These are the moments that remind me how truly blessed I am. Though I wonder during times like these,  where my "real" children are, for this is not the normal around here, I am still grateful for these moments that remind me of how much I love my life. Yes, it may all be a dream, that I will wake up from and be slapped in the face with reality, but I am pretty sure this is not a dream and that in all actuality, I am doing something right and these are indeed my children and they are learning from mine and Joseph's example and maturing into beautiful people who would make any Mother's heart happy. I sincerely believe that life is starting to look up for us and that blessings are abounding around us and I can not begin to tell you how that makes my heart feel. I am feeling an overwhelming feeling of love and gratitude for all the blessings and love my family and I are receiving and have received. I truly love my life and everything it brings, the good and the bad, even though the bad moments at times leave me wondering how I am possibly going to get through them, I know that eventually I will make it through and be that much more blessed and grateful. What an amazing life I have, truthfully, I could not think of a better life! Let just say, before I go, Thank you for praying for and loving our sweet Payten. She is where she is today, because of those prayers and love. We love you all and we hope you all have a good night. Much love

Music is the language that speaks to my heart

I have come to love Sundays and all that it represents for me. I wanted to share a special moment I had this afternoon while at Church. Music holds a very sacred and special place in my heart, for there seems to be nothing else on this earth that can speak to me the way music can. At times I wonder where I can turn for peace and I find that on many occasions, Music is where I find my greatest peace and solace. I love the message and beauty, that a simple song can bring. Music is an art that can bring every emotion felt by man, through it chords and lyrics. I am truly thankful for music and the role it plays in my life.

Today, while at church, during our last meeting, we had a sermon on Music and most of it was done through song, yet there was a short message of spoken word at the beginning in which they spoke about the impact music has on our lives, but the part I want to share on here is a song that was sung. A song that has always spoke beauty to my heart, but today it brought an even greater message of life and beauty, that is what I want to share with you this day. First let me share the song with you, then I will share the message I received from it today,

The song is,

My Heavenly Father Loves Me

Lyrics

1. 1. Whenever I hear the song of a bird
   Or look at the blue, blue sky,
   Whenever I feel the rain on my face
   Or the wind as it rushes by,
   Whenever I touch a velvet rose
   Or walk by our lilac tree,
   I'm glad that I live in this beautiful world
   Heav'nly Father created for me.
2. 2. He gave me my eyes that I might see
   The color of butterfly wings.
   He gave me my ears that I might hear
   The magical sound of things.
   He gave me my life, my mind, my heart:
   I thank him rev'rently
   For all his creations, of which I'm a part.
   Yes, I know Heav'nly Father loves me.
3. Words and music: Clara W. McMaster, 1904-1997. (c) 1961 IRI. Arr. (c) 1989 IRI



 

 

I can not tell you how many times I have heard this song, but never has it spoke the volumes it spoke to me this day. As I was sitting there listening to this beautiful song, the words spoke so profoundly to my heart in regards to my sweet Payten. Joseph and I have struggled for a long time with the fact that Payten can not do certain things, such as talk, crawl, walk, etc. but this song bore witness to me, that those things do not matter. What matters is that God gave her life and the fact that she can enjoy this beautiful world and everything it has to offer. She has been given eyes to see the color of butterfly wings, as well as the blue, blue sky and so much more. She has ears that can hear the sounds of magical things, such as music, songs of birds, the pitter, patter of rain on a roof or ground and the voices of those who love her dearly. She has been given hands that allow her to feel the things around her such as nature and natures velvet roses, grass and rain, etc., but not only that, she can also with those hands, feel her mom and dad's faces, hands, hair, etc. and these are the things that are important. Those other things, walking, talking, crawling, etc., are just luxury items that most of us get to experience, but I am here to tell you that the true joy come in what we see, feel, hear and smell. I have a new found gratitude and understanding of why Payten smiles so often, though she has so many hardships and that is because she truly knows that her Heavenly Father loves her and has blessed her with a life, a mind (it may be a little broken, but a mind non the less), a beautiful heart, eyes that work and can see, hands to feel, ears to hear, and so much more of which allow her to enjoy this beautiful world that her Heavenly Father created.

 

How thankful I am for this beautiful song and the new profound message it has brought to me. Life is so beautiful and music just adds to that beauty. I pray we may learn to enjoy everything this life has to offer. I was not planning on sharing these thoughts and impressions with you, but my heart kept telling that I needed to. So, I hope you found something in these words that touched your soul and uplifted you, as did I today. Tomorrow I will be back with an update on Payten and other things, but for now I just want to leave you with this sweet message that I know Heavenly Father loves you. God bless you all. Good night.

Though I am tired, I am extremely blessed.

WOW! I do not know why, but lately I have been dragging. The other night during my blog post, I was falling asleep, hopefully, you can not tell, by the post! And I was so tired yesterday, I could hardly keep my eyes open through the day. I don't know if it is lack of sleep, or the fact that I was up during the night because Payten's machines were going off,

These pictures are of Payten's Pulse Oximeter and if you do not understand what the numbers mean, the top one in red is her oxygen levels and the bottom one in green is her heart rate. Now these numbers last night were not pretty, 84 and 72, these are not the numbers you want to see for Oxygen and the heart rate was not horrible, but still a little high for sleeping. So I was up through out the night, both last night and the night before last. Therefore she required oxygen throughout both nights and needed adjusting, in order to keep her saturation's up in the 90's. So this could possibly be the reason for my lack of energy, extremely tired state I seemed to be in all day long, but I don't think it is the sole reason.

It also could be from having to constantly chase this little mischievous little bugger around.

Isn't he cute?! Cute, but naughty all rolled into one!

I believe that it is both these things and other things such as Joseph working long hours and me staying up late, no respite help as of yet, etc. All these things are contributing to my lack of energy, extremely tired state. The reason I go into this, is that fact that last night, I was planning on staying up to blog, but my body had other plans, I feel asleep at 8:00pm and slept through the night. Boy do I feel energized and refreshed! I needed that sleep!

Anyways, life is getting better for Payten. Though her oxygen levels have not been the best while sleeping and therefore she has need some oxygen supplement during the night, which leads us to believe she might be getting sick, she still has been doing better during the day. I am starting to see that time is helping in regards to her medication and tolerating it.

This is a picture of Payten taking a nap yesterday, such a beautiful little girl!

 Even though she is still sleeping more than normal, she has been more awake these past few days than she has in awhile and yesterday she was even more awake and playing, which is really nice and exciting to see. I need to have more faith in my Doctors, for her Neurologist was right, I guess all she needed was time, I sincerely hope that she will continue to keep getting better and better. The school called yesterday, to check on her and I gave them report and the plan is that they will call and see how she is doing after October break and hopefully she will be back on track and to her baseline, so that she can start school. I sincerely hope that this will be the case and that Payten will get over this hump she has been trying to climb and keep climbing it, so that she can start doing well at therapy again and that she can start going to school in order to have her educational needs met. Please pray that this will be the case.

More good news, we have approval through the insurance companies to take Payten to the doctor in Salt Lake City. Now all I need to do is call Dr. Cook (Payten's Neurologist) and see if there is anything special I need to do when calling to set up this appointment, but it looks like we will be heading to Salt Lake City soon, in hopes that we will receive greater insight to Payten and how we can better help her and her needs. I feel deep down in my soul, that this is the answer for us to know how to help Payten better, so I am super excited that things are falling into place. What a blessing this is turning out to be. I will keep you all posted as to when we will be headed to Salt Lake, to see this Doctor and how it goes.

With all of these things falling into place and Payten seeming to do better each and everyday, besides the fact that she might be getting sick, I feel on top of the world! Though I have been extremely tired lately, I feel extremely blessed. I feel like soon this will be a thing of the past and Payten will start climbing up that hill again and start showing off what she can really do in her therapies and at school. I am excited to see what she has to show us. I know that she has a few tricks up her sleeves and I can't wait to see them! My heart is over flowing with gratitude right now and though she is still teetering between up and down hill and is still not over the hurdle yet, I have faith and hope that she will make it over it and go up hill, rather than down hill and that things will continue improve. Please keep praying for our sweet angel and thank you for all of your love and support. Life is good! Blessings are abundant. Sometimes it just takes time to see the blessings. We all need to remember to have patience, for it is all done in the time of the Lord. Much love to you all and may you all feel the love that God has for you.

I love calm and relaxing days!

Today was a less emotional day for Payten, which meant a less emotional day for me, too. She did still sleep more than normal, however she was awake more today, than she was asleep, so that is always a plus. Maybe the Doctor is right, all she needs is time and with time she will get back to her baseline. Here's to hoping that this is the beginning of Payten getting use to her medication, so she will not sleep so much. If days like these can keep coming for her, then I will be one happy Momma!

Makenna had her OT evaluation and it went really well. She does need to have OT.  For how long, we do not know, it will depend on her pace and how quickly she moves along. She too, is showing signs of Sensory Processing Disorder, just like Zachary, though they both suffer from this, they are different in the fact that their symptoms and how they react to their environment are very different. Though it is hard to face, I am happy we are addressing the matter and getting Makenna the help she needs, in hopes that she will flourish in school, once OT is finished and Makenna's sensory needs are under control. Maybe just maybe this will be the key to get her to come out of her shell and not be so shy. The OT is hopeful that it will help with her shyness, as well as many other things, such as coordination, handwriting, math, focusing better, etc. Again it is going to take some time and it will be a long road, but once we are finished the outcome will be worth the time, effort and price paid. I am so grateful there is help out there so that my kiddos can receive it, so they will have a greater chance to reach their full potential.

This evening was Parent/Teacher night in Zachary's class and boy was it fun going and seeing what he has been up to. Seriously, this kid blows my mind with his brilliance, uniqueness and randomness. Both of Zachary's teacher's pulled me aside to tell me how much they love Zachary and what a unique and fun kid he is and how sweet and kind he is to everyone. These are the things Parents want to here about their children. They also said, Zachary is one of their favorites because of his creativity and fun loving attitude. Melted this Mommas heart to hear them say these things. I am glad they see past some of his goofy, random and sometimes weird thoughts and actions, and can see the brilliant kid he truly is. Here are some pictures of some things he has been up to in class,

This first picture, shown above, is Zachary's self portrait. Instead of drawing a head and body that reflected how he looks, Zachary decided to do something very unique, he decided to do his self portrait of his imagination and show how he sees himself and the different things that make him who he is. It was pretty cool to have him explain everything and the reasoning behind the different images and why he feels these different things make up who he is as a person. What a creative way to describe one's self, I was truly impressed by how he was able to think outside the box.

This second picture is the timeline of his life, from birth to now and he again was extremely creative with what he chose to put on there about the different years of his life. Some of the things he remembered amazed me, for they were things I didn't even remember, it made me realize what an awesome memory he has. Tonight made me appreciate my son for his creativity and uniqueness. I love how quirky he is!

The last thing I want to share is a story that Zachary wrote in class. The assignment was creative writing with a group and his group came up with the idea of a new Comic book series called, The Logan League Comics and they each wrote a story for the comic book series, this was Zachary's,

There once was a man named Zachary. As a boy he learned he had superpowers. They were the power to control time, the ability to fly and to be able to breathe in any environment and speak any language. At the age of nineteen, he was done with air force training and joined the air force. A couple months later the military discovered he had super powers and locked him up. They were about to ship him into a volcano, when all of a sudden, out of no where, came another super hero, named Weather Boy, who saved Zachary from his death. Weather boy asked, "Who are you?" Zachary said, "My name is ZHM." After this introduction, Weather Boy and ZHM became best friends. Zachary who is now known as, ZHM, was allowed five seconds in the future, by the solar comet, who is the controller of all the universe and the master of all super powers. The solar comet, told ZHM, he could take one souvenir from the future realm. So ZHM took the greatest robe in the universe, because it was the only thing that could move through frozen time. Then he made a logo for himself, that he kept in his wallet, because he was afraid if he attached it to his robe, the robe would be destroyed.  After he got his souvenir and logo made, ZHM decided to join the Logan League of Superheros, with his best friend Weather Boy. His new comrades started teasing ZHM about his name, so ZHM put his head down in shame and frustration and walked away, instead of arguing with them, which is what he did quite often, because he did not like conflict. The next week, they found two little girls, who possessed superpowers, named Blue Fire and Candy Girl, who they were able to talk into joining the Logan League. ZHM, however, decided to call Candy Girl, Rainbow instead, which was fine with Candy Girl, because she loved rainbows. Then to every ones surprise, Vex came, ZHM's mortal enemy, to try and trick the girls into joining his League of Vexens, but to his misfortune, Vex 2 (a clone of Vex) jumped in, from behind Vex and stabbed Vex in the back, bringing him to his death, all while ZHM and the rest of the Logan League were watching. Don Don Don! To be continued....

I'm telling you this child has a career in writing or comedy or drama. He is beyond creative, it amazes me, the things he comes up with. I love him and his amazingly weird/unique mind. I hope he never changes, for he is prefect just the way he is! I am grateful that today was a more slow and relaxing day, with little drama. These are the days that I need, for my life can be crazy most of the time, therefore when days like these roll around, I bask in all it's glory! I pray you all had a lovely day and that you all have a blessed night.

May we find the joy in every moment

How cute is this?! Payten's Physical Therapist gave her these Mini Ears, out of a bunch of stuffed animals and other things, that her Mother in Law gave her to give to all her clients. Miss Anna thought this was the perfect thing for Payten and I agree, I think she looks adorable. Miss Anna wanted a picture so she could send it to her Mother in Law and say thank you. I love, the love Payten's therapist have for her, I know she can feel it and it makes Payten so happy and it helps her to thrive so much more, than if she didn't have that love. This was such a sweet gesture from a stranger, that will be cherished forever. This might just be what Payten dresses up as for Halloween. I guess you will have to wait and see!

This morning was a difficult morning for Payten. She was very emotional and not handling life well. It was very difficult for me, because when I would try to hold her, she would get more upset, so I had to let her do her thing, AGAIN. I should be use to this, for it is not the first time that I have had to walk away. We that said, I still believe it is something I will never get use to, because as a Mother, you want to comfort your child when they cry, but in Payten's case, it does not work that way and it breaks my heart. So moments like these,

though they may be hard, because of the knowledge we have that it is a drug induced sleep, due to medications, etc., these moments are still extremely precious, for these are the moments I can hold her, rock her, hug her, kiss her, just plain love on her, all while singing or reading to her. I don't get these moments when she is awake, at least not very often, so it hit me today that though this is not ideal for her to sleep all the time, I need to find the joy in these simple moments and realize that this might be a gift for me, her Mom, in the sense that I can do these things with her, that I desperately yearn to do, but can't, because she does not have the ability to slow her mind and body down to allow it.

So this morning after she fell asleep, before I laid her down, I held her in my arms and I rocked her and caressed her hair and cheeks and I told her everything I loved about her, in the hopes that she was listening and heard me and then I ended our sacred moment with a few of her favorite songs. It was a moment that was frozen in time, that I will always have in my mind to cherish forever. She is an angel that has been bestowed upon me and though her life is filled with hardship, she is everything that is good and I can not believe that I was the lucky one to receive such a precious being. So instead of resenting the fact that the quality of her life is diminished due to her sleeping most of her days away, I need to take advantage of these precious moments in time and love on her and sing to her and read to her etc. for I won't receive as prefect an opportunity as this and these will be the moments that I will remember always. I am truly blessed and this little darling happens to be one of my greatest blessings. I can not believe she chose me! It is mind blowing to think, she is going to be five in just a few weeks. Time goes so quickly, therefore I am going to make a conscious effort to take advantage of these moments in time and enjoy this beautiful face, that I love dearly, the face of my sweet Payter Tater!

May we all take advantage of the simple moments we are given in life and make the most of them, for we do not know how long we have, therefore we need to make every moment count, whether it is good or bad, we need to make the best of it and find the joy that is with in it. I am so thankful each day for the simple lessons I learn. They help to strengthen me and uplift to me to be better. May we all strive to be better in our lives, for there is always room to improve. I love you all and I am blessed to have you in my life. Now go hug someone you love and make some precious memories together. Much love to you all and good night.

Laughter and Cleaning are the best medicine when dealing with stress!

Today was a way better day in regards to my emotions. Honestly, I do not know why I have been all over the place with my thoughts and feelings. Most of the time, I believe that I am a pretty level headed person. Usually I can handle or at least I try to handle the challenges life throws at me with, dignity, poise, and strength. But lately it seems I just fall apart at the seams, over every little thing, which is not my normal at all. Now, please don't get me wrong, I believe that crying is a good thing, but I also believe it is not good to do all the time, which is what I have been doing lately. I just feel like I am seeing the more negative side to things rather than the positive and that just is not my typical way of thinking. So, what gives? Why have I been like this lately? The only thing I can think of, that could be the reasoning behind all these emotional upsets, is the fact that Payten is not improving. If it's not one thing, it's another and it is taking a toll on my emotions. We keep trying different things and nothing seems to help. I truly am starting to wonder if this is the beginning of the end and I think subconsciously, I am taking it harder than I expected and therefore, it comes out through my emotions and thoughts. I truly hope that is not the case, but I think someone needs to tell my subconscious that, for it is not getting the memo and therefore is making me act all wacky and crazy like! Luckily I was able to find a little reprieve from all of  these emotional upsets I have been having and had a pretty mellow day, today. Payten still slept the day away and Emmett ran amok, but for whatever reason it did not effect my emotions today, which is a plus.

The only thing that sort of got under my skin, happened to be an event first thing this morning. Today was picture day and for whatever reason, the universe is against me, when it comes to picture day. It does not matter what I do or how prepared I am in regards to laying out clothes, figuring out hairstyles, etc., Picture day HATES me and it drives me insane! Without fail, something goes wrong, always. Either we can't find an outfit  or one of the kids spills something on their outfit, whatever could go wrong, goes wrong on picture day! Typically the bad luck is with Makenna's hair. Not one picture day has come for Makenna, that the pre-planned hairstyle has been a success.  The first two years of Makenna's school pictures, I tired curling her hair the night before with the sponge rollers, Epic failure. Any other day and it works, but picture day, no way, no how! Last year I gave up curling it and braided her hair the night before instead, so it would be wavy when I took it out in the morning and again, Epic fail! So this year I was bound and determined to have a successful picture day in regards to Makenna's hair. I woke up at 5am, got Makenna up at 5:30 and started on her hair, thinking, Oh yah!, I got this, we have plenty of time, if something goes wrong, I have time to fix it! Oh, how wrong I was! The headband braid that I tired (which I happen to do on Makenna's hair all the time.), would not work on her hair this morning. I tried four times and after the fourth time, I realized I had used up all my time and went into panic mode. It was 7:45 and no one and no lunches or breakfast were ready and to top it off, they wanted Zachary at school early! Really? Of all the days they need him there early?! It has to be picture day! The one day during the year that truly has it out for me?! I ran around like a mad woman, trying to find bobby pins and other hair accessories, to try and fix this mess I had created, til finally, I gave up and took  Makenna to the bathroom, straightened her hair and threw a headband in it. By this time I was beyond tired and was just happy with the fact that it was not bed head!!!! After yelling at the kids to grab something for breakfast and pack their lunches,  I threw some clothes on, grabbed Payten and Emmett and ran out the door! They were both only wearing diapers, seriously, you would have thought we had just woken up, when in all reality we had been up for three hours. I got the kids to school with five minutes to spare. Zachary may have been late, but it was a major success in my book considering it was picture day! LOL! With that being said, I have come to realize that prefect, picture day hair is an unobtainable goal in this house, that I need to give up on, for Makenna's hair hates me on this day. Lesson learned! (and it only took four years! Yessss!)

Now, that could have totally upset my entire day, but I did allow it to. Rather when I got home, I played for a short while with Payten and Emmet, until Payten passed out and slept the rest of the day. To which I decided to make constructive use of my time since Payten was sleeping and lose myself in cleaning. I have come to find that cleaning is the best therapy. So when I am beyond stressed or have been beyond stressed, I clean. So today, I grabbed a tooth brush, cleaner, Emmett, some toys and books, and headed to the shower, where I scrubbed it, til there was nothing left to scrub. Seriously, this by far, is the best release for anger and frustration, that I have found. I love it and so does my family, cause they get a super clean house. So instead of allowing my day to go a rye,  I chose to go to the other extreme and became a Psycho house cleaner, taking my anger and frustration out on the grout! Poor grout, I don't know what you did to deserve such anger placed on you, but thank you for letting me abuse you, for I feel so much better! I love cleaning, it makes my heart happy and it helps me to release some much needed stress.

Not only does cleaning help me get out of my emotional funk at times, but my son, Zachary helps as well. He is my Napoleon Dynamite loving, Monty Python quoting, random kid, who makes me laugh daily. He is the most random, yet funny person I know. He is constantly making everyone around him laugh. Today was no exception. After scouts, we went over to Zachary's Aunt and Uncle's house, to pick up Military Attire, because tomorrow is Wacky Wednesday and the theme is Military. After we picked the outfit up and got home, Zachary went to his room, to finish his homework, so I thought! A few moments later, he comes out wearing this,
 

and says, "Check me out, MOM! I am an Italian, military, fireman! But you can call me the, Italian Stallion!" Then he proceeds to talk in his version of an Italian accent, while doing the above poses. Seriously, I could not stop laughing. Where he comes up with this stuff, I have no clue, but he is hilarious! And no, he will not be going to school as the "Italian Stallion" like he wanted to, rather he will be going dressed like this,

 

It may not be a funny look, but it sure is a handsome look! This kid has the entire package, Good looks, great personality, funny, smart and the kindest heart you could ever imagine. I seriously can not get enough of this kid and his antics!

 

Though today ended up being, Picture Day- 4, Mom - 0!, it still turned out to be a great day. No, Payten is not better, but hey I have to keep pressing forward, with a smile on my face and the hope that miracles can still happen! Thank you for all your love and support! I know that plays a huge roll in how I feel and I greatly appreciate all of you. May you all sleep well this night. Much love from our family to yours, God bless.

 

 

The unknown is one of the hardest parts about parenting Payten

This video is just on here to indicate how Emmett and I felt about it already being Monday, for we were not wanting the weekend to be over yet! Emmett just happened to more vocal about his disapproval than I was and for several hours, I might add. It seriously was one of those Mommy moments, where I wanted to pull my hair out because I could not take the crying much longer! That Mommy moment came shortly after the third hour hit and he was still crying. Seriously?! Who cries for three hours? Apparently, Emmett does! Thankfully nap time came shortly after the three hour mark, when this Momma was about to lose her cool. Oh how grateful I am for nap time, especially on days like these!

Such an angel when sleeping and usually an angel when he is awake, but for whatever the reason, he was not having it this Monday morning! Oh well, we all have our days like this, it just happened to be his day. Thankfully his nap time lasted a good three hours. The only crappy part was that I still did not get a break, due to Payten still needing a lot of things done, such as administering medications, CPT and breathing treatments, all before the first therapy appointment at 10:30. Luckily with Emmett falling asleep earlier than expected, I was able to get it all done, with time to spare!  Payten and I were even able to have some alone time, which is a rarity in our house and I must say, it was quite nice to have that time together. The frustrating part was that right as the therapist knocked on the door and between getting up to answer the door and returning with the therapist, Payten fell asleep. Seriously, I had just been playing with her and now she was dead asleep, snoring the day away? The therapist was surprised that Payten had been awake just a few short minutes prior to her arrival. We tried everything we could think of to wake her, with no luck. It was beyond frustrating, for Payten needs these therapies and yet she can't benefit from any of them because she is always sleeping. I know it is because Payten is still getting use to the new medication, but come on! Can't something give already?! Hopefully with time, it will get better, but as for now, I guess she will continue to sleep her days away. The feeding therapist and I, did discuss switching her time to 8:30 in the morning to see if that would help with Payten's availability. It's worth a shot, right? I am crossing my fingers that we will see improvement with the time change. I am also hopeful that the other therapist will be willing to make changes to Payten's schedule if needs be, in order for Payten to fully benefit from what they have to offer.

 Physical Therapy was just as frustrating if not more frustrating. During feeding therapy, Payten's PT called to touch base and make sure we were still on for our session, considering everything that has been going on with Payten. Which I informed Miss Anna that Payten was sleeping right at that moment and that I was unsure she would be wake for the session. The PT felt that an hour and a half would be plenty of time for Payten to rest and be up and ready for PT. Therefore we to proceed with the appointment and we also decided that instead of me lugging Payten and Emmett to the clinic, Miss Anna would come to us, that way Payten could rest longer and hopefully be that much more willing and able to preform during PT. Boy were we wrong! Payten did wake up, like Miss Anna said she would, right at 12:30, however right when Miss Anna showed up, Payten went back to sleep. I really am starting to wonder if Payten's body has some kind of radar that alerts her as to when her therapist come, which allows her body just enough time to shut down in order to get out of therapy, all because Payten does not feel up to all the hard work that will be involved during the therapy session. I know it sounds crazy, but I really wonder. I am frustrated with myself, because I feel I should have roused her more while she was awake, prior to Miss Anna getting there, but I didn't not want to brother her too much because I knew PT was coming and what hard work PT entails, therefore I wanted to give her time to relax and wake up on her own, to ensure that Payten would have enough energy for her session. Well, I found how well that worked out and next time I will know better and try rouse her more. Again, this sleeping during therapies is beyond frustrating. And what makes it most upsetting, is the fact that there is nothing I can do about it. It is completely out of my control, as well as Payten's.

While Payten was asleep, her PT and I had a nice long chat about Payten and all of our feelings regarding everything that is going on with her right now. We both expressed how hard it is to see, for this is not the Payten we know and love and we do not know what we can do to help her come back to us. It is so hard, for we know that the seizures need to be controlled, but if the medication is causing her to not function, what good is that doing? It is a hard place to be in as her mother, because I see what the seizures do to her and what state they leave her in and how they effect every aspect of her life, but then I also see the side effects of the medication and how they prevent her from living life and I am left choosing between the two, and trying to figure out what is the best option for her. Believe me, that is a heavy burden to carry, for if I choose no medication, it could leave her in a state of discomfort, pain and unconsciousness, with unknown side effects on her mind and body that could be extremely damaging  and ultimately lead to death. But if I keep her on the medications, it could still leave her in a state of unconsciousness and it might still not fully control the seizures, which could still have similar side effects, that could also lead to death. So here I am left wondering what I should do? I want quality of life not quantity for my daughter, which neither seem to be giving her right now. The only thing I have to rely on is prayer and the impressions and gut feelings I receive after praying. It ultimately boils down to me having enough faith that I am choosing the best path for my daughter and I believe that the right path at this moment is the medication, therefore that is what we will remain doing for her. I just hope that over time she will come around and get use to the dosage she is on, so that she can start living life again, rather than sleeping it away.

Another hard part about today, which I believe was the hardest part of my day, was when I was talking with the PT about how Payten had been in such a good place before all of these seizures, which reminded me of the hope I once had, the hope that I would be able to give Payten a walker for her birthday (which is in a couple weeks) and with that walker, Payten would start taking steps and eventually get the point where our family would see her take a few steps with no help from Joseph and I by Christmas time. What a miraculous gift that would have been, but one we will not see this year. Can we say devastating? Right at that moment, as those thoughts and feelings entered my head, I felt as though my heart was being ripped from my chest and stomped on, for we had come so far and now it was all being ripped away from us. For Payten is no longer in a state where that is even attainable right now and we do not know if she will ever reach that state again. This by far is the hardest part of life with Payten, for we hope and pray that goals will be met and that we will see miracles performed and we come so close to seeing some of these miracles obtained, miracles we have so desperately yearned and waited for, as well as put time and effort in to achieve and it all comes crashing down, because of one minor set back. Words can not describe the pain and frustration that Joseph and I feel. I know that there is still a chance she can get back to this state, because she got there once. But how long will it take for her to get back there? Another five years? Then what? We go through it all over again,  just to be let down all over again, because she has another minor set back? Which leaves us having to start all over again. This is where it becomes too much for our minds to comprehend/handle. This where it becomes extremely hard to remain positive. For you feel like you are fighting a losing battle.  But like I have said in the past, as hard as it is, I have to keep going and keep going I will, with the faith that things will improve and that ultimately hope will conquer all the odds that logic puts forth.

After the PT left, I broke down sobbing, for it was too much to think about. Reality has set in and I am unsure whether we will even get over this hurdle Payten is being faced with. The Doctor, however is still extremely hopeful that within the next two weeks, Payten will be better than ever and she will start regaining her strength again. Which gives me a glimmer of hope that helps during these moments of despair. I hope and pray that he is right and we see great improvements in the weeks to come, for I can not bear to watch Payten live her life like this much longer. My body can not keep going like this either. The stress is becoming too much to bear. I am beyond tired and I ache from head to toe and I know it is all because of the worry and stress that I am under and I desperately need a reprieve from it, for the human body can only handle so much. I do know, however, that all this torture my body is going through and everything Payten is facing, will all come to an end sooner than we realize.  I am just not sure what the ending will be and if the ending will leave me in a more devastated place than I already am in. I know that by saying this, I am living in the future and I know that I should not do that, but honestly, it is hard not to, for it is my daughter's future we are talking about and I love her so much, I can not help but think of that future might entail. I just pray that I have the strength to face whatever is ahead of us and that it will turn out to be what is best for everyone involved. For now, I just have to be thankful for everything I have and the blessings that the Lord bestows upon me and my family each and everyday, for I know we have an abundance of blessings that are beyond compare and for that I am truly grateful. Before I leave I want to ask that you keep Payten in your prayers, for she is in desperate need of them, as are Joseph and I. Thank you for all your support, much love to you all and may you all have a blessed night.

Keeping it real

I am going to be real for a moment on here again, like I shared in a previous post, I suffer from depression. Today was one of those dreadful, yet, uncontrollable days. I woke up feeling all sorts of emotions other than happy ones. As much as I know I am blessed and have a beautiful life, days like these hold those truths hostage inside me and release a rampage of negative thoughts/feelings on my soul. Feelings of self doubt, inadequacy, sadness, etc. and as much as I try to regain control and overcome these moments of despair and grief, I seem to fall short. It is a battle that on days like these you feel there is no way of winning. But even with the hopeless feeling of fighting a losing battle, I never give up! I keep trying to remember the good that is within me and I try to lose myself in the service of others, and point out every good quality I possess, etc. and as long as I strive to keep seeing the good that I have within, I find my way through these dreaded barriers that my mind has set in front of me and I am able to break through them. I still feel weak and tired afterwards, for it is a hard battle to fight and break through, but I feel so much better, happier and stronger, because I buried the depression that tired to over power me and instead, unleashed the good/positive thoughts within me.

It took me all day to get through the despair to this triumphant spot/place I am now in and now that I am finally here, I am feeling a lot better. I truly hate days like these, where nothing triggers the despair/depression, rather I just happen wake up in the dreadful funk. It truly is one of the worst feelings a person can experience. But I am so grateful to know who I am, what my purpose is and where I am going, because this is the knowledge that helps me to not give into to these terrible days of sadness, but rather fight my way through them, to the light that brings the positive energy back. I am truly grateful I was able to break through these barriers of HELL today, so that tomorrow will be better/brighter day. Unfortunately sometimes I am not so lucky, some bouts of depression take days and weeks to break through the dreadful walls that it puts forth. Those are the times I don't know how I make it out or through, for those are the darkest and hardest of times in my life, fighting the battle of depression. If you are like me and you have days such as these, please know you are not alone. You are not the only one who battles these demons. Know that you are of greater worth than you realize and that you are love beyond comprehension and that there is always a way out, just keep fighting to find the good again, because there is always good to be found, never forget that. Always remember you are of great worth.

The update I have on Payten is not the best, she had a few seizures today, so that did not help with my negative emotions that I happened to be faced with today. She struggled greatly with recovering from the seizures today, which left me feeling confused and a little lost. I do not know what to think anymore. One day she is fine and the next day she is struggling again and I don't know what to think or do for her. I will be calling the doctor tomorrow  morning to see what he suggest we do for her. I truly believe in my heart that this medication is the answer, but I am not sure the dose is right for her yet. I hope and pray that the doctor has an answer as to what will best help our sweet Payter Tater, for I do not know how much longer she can handle these seizures on her little body, nor how much longer Joseph and I can emotionally handle it.

I also pray that days like today, for me, are far and few in between. I have not had one of these types of days for a little while now and I believe that stress and worry play a huge role in these types of days rearing their ugly heads and therefore it was bound to happen at some point, today just happened to be the lucky day for me. Life is a difficult journey that we all face and struggle with, yet it is such a beautiful journey worth living. If we only could understand one another's burdens, heartaches, struggles, etc., we would all be more understanding of each other, as well as a little kinder and loving towards one another. No one has a prefect, happy life, we all have struggles and heartaches, so instead of envying what we don't have and what we believe everyone else has and stop trying to tear each other down in order to make ourselves feel better, let's rather try an uplift, strengthen and encourage one another, for we all are on the same team, fighting similar battles, striving for the same goal/outcome which is happiness in this life, so why not work together, rather than against each other. I love you all, this is my inspirational thought for the night, God bless and Good night to all of you.

Our Saturday of DIY projects

Oh goodness me! I have forgotten not only how time consuming DIY projects can be, but also what hard work they can be as well! Boy, are Joseph and I tired! Like I said last night, we had some pretty ambitious goals set for our day and we managed to get part way accomplished with one of our goals. Not what we ultimately wanted the outcome to be, but still it was a success, especially in our life, considering everything we have to do for not only Payten, but three other children. It was a crazy, mad house over here, but Joseph and I persevered through the day and we finished getting most of  Makenna's bedroom furniture painted, but not only that, our four children managed to make it out live, too! So I will say that is a success in our book of life! Here are some before and after pictures of some of Makenna's new bedroom pieces,

All we have left to do now, is paint the hardware/dresser knobs, finish covering each piece with clear wax coating and then we are going to go over it with a dark wax coating, to give it a little antique finish. Also I need to either, paint the marble top to the night stand or find a different marble top that matches better, I am not sure which I will do yet. The marble that is there right now, is the original marble for the piece, so we might just replace it with something else, but I am undecided about it right now, because I think painting it purple would look really nice too. Decisions, Decisions! I am proud of  Makenna, she picked the colors out and I think she did a beautiful job. I am really loving how it is turning out. My friend Lola, told me that once I started painting furniture, I would not want to stop and she was right! The next adventure will be Zachary's dresser. I am loving Annie Sloan chalk paint. Seriously, it goes a long ways and it looks amazing and is so easy to use. I am so happy we decided to try it. I have found a new hobby!!!! Expensive, but fun!

Other than painting these different pieces, Joseph and I achieved nothing. No garage cleaning, no yard or house work, just painting! Which would be fine, if we did not have four children who ran amok in our house! Now my poor house looks like a tornado went through it, oh well that is the price we pay to get projects done, right?! Besides, house work is an easy fix, so I will live! At least the kids had fun while running amok!

Payten had a really good day today. She required no O2 last night or today and she had clear breathing sounds, along with no seizures. She took about an hour nap and was awake for the rest of the day, playing and having fun. It was a complete 180 from the day before, so this child has me completely and utterly confused as to what is going on with her. I guess this means, I will continue to do what I am doing and keep monitoring her reactions, as well as behaviors to ultimately determine if this medication is doing the trick. I hope that we will finally be over all this drama soon and have some smooth sailing for a little while. One can hope, right?! All in all I am pleased with how our Saturday turned out. As always, we ended our day with family time, which Payten's favorite part of family time, is sitting on Dad's lap,

Makenna and Emmett had some fun too,

Makenna loves dressing in her ballet attire and Emmett, well he loves wearing Makenna's shoes! Silly boy! Makenna may not be the best ballerina around, but she sure is the cutest and she definitely tries hard and practices lots,

Well, that was our day, I sure hope you all had a blessed Saturday too and that you all have a lovely night! Good night and God bless.

An unusual school day!

Payten had a rough night last night, she struggled with her breathing throughout the entire night. Her oxygen saturation's were in the low 80's/high 70's and normal range for a person sleeping is mid 90's. So we hooked her up to oxygen and kept a close eye on her through the rest of the night. Now the question we are asking ourselves is, was the low oxygen seizure related or is she getting sick? Last night it seemed she was getting sick, for she sounded congested and her breathing labored, so we chalked it up to her getting sick, but this morning, she woke up with clear sounding breaths, that were no longer labored, so that leaves us wondering if it was indeed seizures she was having last night.

This morning was an unusual morning.  Payten's Occupational Therapist scheduled a makeup session at 8am.  Usually that is the time I am scrambling to get my kids out the door for school, but I figured I could arrange for someone to take them to school for me so that Payten could receive this much needed therapy. So that is exactly what I did. I arranged for my father to pick the kids up, but sometimes his work schedule changes and things get in the way, therefore, when he called to apologize that he would be unable to help me by picking up the kids for school, it did not bother me or stress me out too much, because first of all, I knew it was a possibility that he would be unavailable and second, I figured it would not kill my children if they were an hour or two late to school.

Payten did really well during OT this morning, which really shocked her therapist, for it has been almost two months that Payten has been unable to preform during OT sessions. The only thing the therapist noticed was that Payten is fatiguing fairly quickly, which before all these complications, Payten's stamina was extremely high. Overall though, we were both extremely pleased with Payten's therapy session today. I told the OT, that it did not surprise me, for she seems to be at her best first thing in the morning. Which makes me wonder if in order to have Payten receive the benefits that each of her therapies have to offer, we need to change the times to first thing in the morning. I guess I will have to really think about the pro and cons and seriously consider all of the benefits and decide if that is what would be the best option for Payten at this time. It will be hard, but I will manage if that is what Payten needs. Shortly after OT, Payten fell back asleep, it was around 10am and Payten slept til 3:15 pm, so that makes me think/lean more towards seizures, than illness, but she did require O2 during her nap, so it could be a combination of both illness and seizures, I guess only time and observation will tell. I just pray that this will not become her new normal and that her sleeping patterns will regulate and her stamina will increase back to where it was.


As I said before, I had planned on taking the kids to school shortly after therapy was through, but plans quickly changed when I found Emmett covered from head to toe in mud. I made the children go outside during Payten's therapy session so there would be less distractions for her. While they were outside playing, Zach and Makenna, decided to allow Emmett to cover himself in mud! Seriously?! At the time of the event, I was a little peeved, but now that I think about it, it is pretty funny. The first thought I had when I discovered the mess was, to yell and scream, but instead of yelling and screaming, I threw my hands in the air and said, PLOT TWIST! Who wants to stay home from school today?! Which to my surprise, they all shouted for joy and hopped on board with my new found idea for the day. The only rule I set, was no TV. So for the rest of their morning, they stayed outside, making mudpies and running around pretending, playing tag, etc. Then they came in, cleaned up from the mud baths they took outside and we had an indoor picnic, read books, did spelling tests and math facts, as well as free art. You could say that today was a home school type of day! Which every now and then I think is needed, especially in our family, for we tend to have a lot of stress in our lives, and days like these seem really help bring down those stress levels and put things back into perspective.

Though I have been worried and stressed and getting sick from all the worry and stress, I am sincerely thankful for today's unexpected plot twists, for they really helped to release some needed stress and allowed me to relax. I am so very happy with myself that I was able to remain patient and calm, with a positive outlook/attitude regarding all the unexpected events of this morning. By doing this, it allowed me to just go with the flow and take the different unplanned twists of the morning as they came with a smile, when in all reality, I could have gotten extremely frustrated which would have ruined the entire day. It just goes to show what having a good attitude can do. These are the days my kids will remember for the rest of their lives and therefore I am happy I could allow them these precious memories.

Tomorrow is going to be a super busy day. Joseph and I have some very ambitious goals set and I hope we accomplish each and everyone. One of the main goals we have set is, painting Makenna's new bedroom set. I bought chalk paint last weekend and tomorrow is when we embark the journey of  learning how to paint furniture using Angie Sloan Chalk Paint. I pray it is as easy as I have heard and that it turns out as cute as I picture it in my head. Another goal is cleaning and organizing our garage, which is a complete and total disaster, so off to bed I better get, for I have and extremely busy day tomorrow. I pray that all of you have had a lovely day and I hope you get the rest you need and accomplish everything you set forth to do tomorrow. Much love to you all. God bless and good night. Oh and my apologies for having no pictures. I wish I would have snapped a few, but I really was kind of off today, for I had a really bad headache and did not feel well, so again my apologies. I will hopefully do better about capturing the moment through picture.

Talking and Communicating is a gift we all take for granted.

I believe the stress of Payten's seizures, etc are finally catching up to Joseph and I, which I am surprised it has taken this long for it to catch up. We are both getting sick and I know it is because we are run down from lack of sleep and stress. Stress is horrible on the body, it reeks havoc on it. It is no fun, but hey it always could be worse. I just pray we can get over our illnesses quickly, for we don't have a life that allows down time! But honestly who does have a life that allows down time?!

Today Payten had a few set backs. She had several seizures, which she had a hard time recovering from and when she did finally recover, it was pure torture on hers and my emotions, for she was in hysterics for several hours. This is one of the hardest parts of parenting Payten. These are the times Joseph and I feel the most helpless, honestly it is hard not to feel totally worthless during these moments, for we can not do anything for her. Parents are suppose to care for their children and help them through and with their struggles, but with Payten it is not that simple. Most children can express or rather communicate what they are feeling, or struggling with, but Payten can't. She can express herself through different emotions, such as crying and laughing and body language as well as, facial expressions. But what happens when you try everything you can think of or everything your mommy gut tells you to do, when your child appears to be in distress and grief and nothing seems to help? What then? If your child can't tell you and you can't read minds, what then? I can tell you, you sit there watching in disbelief and heartache, praying that either, you as the child's parent can receive some profound inspiration as to what to do for your child or that relief comes quickly for that child. How do I know this? This is what I do, for there is no other choice. There is this choice and crying, and I find myself doing both and doing them very well.

Today, Payten was hurting or upset or uncomfortable or in distress of some kind, but which of these, I do not know and why, again, I have no clue. The hardest part though, is not the unknown of what and why, but rather, the fact that nothing you do, seems to help her. I tried holding her and all she did was cry harder and hurt me. What I mean by hurt me is, she either was ripping my hair out or scratching my face, and other painful things, but when I would set her down, she would get that much more frustrated and sad. It reached the point where I finally I had to walk away. I had to leave the room, for I could not take it any longer. I could not watch my daughter suffer one more second. I left the room crying and praying that somehow something would give and she would begin to feel peace and stop crying.

These are the times I so desperately wish I could talk with her and ask her what she is feeling and  needing, but I can 't. This by far is one of my sincerest prayers, that one day we will find a way to communicate with our daughter. That is the one thing that I can't seem to come to terms with and let go. For I desperately want to here her say words! For the past five years, well fives year in a few weeks, I have desperately yearned to here Payten utter these four simple words of, I love you Mom, words that we as parents take for granted. I dream of being able to sit down with my precious daughter and here her sweet voice, but I know that most likely that will never happen in this life. I know that it will be a dream that will have to wait until we are reunited as Mother and daughter in heaven and that it will be a conversation I will cherish.  For now will just continue dreaming of that day, until it comes, for I know it will come and that it will  be more beautiful than I could ever imagine.

 Knowing this, gives me hope and strength to keep going. I know that most likely Payten will not utter words in this life, but I do hope that maybe she will eventually learn some form of communication, such as pointing to things, or hitting a button on a communication device or computer, or sign language, none of which we have had success with as of  yet. And in every study done on GTP that is shown, shows that this is the one thing that never seems to come, or happen.
Speech and communication. And that truly breaks my heart. Oh how we take for granted being able to talk to one another.

How would you feel if you were in there somewhere, but you had no way of expressing yourself or communicating? Wouldn't it be scary? Don't you think it would become lonely, aggravating,  and extremely frustrating? I know it would be that way for me and I know Payten has to feel this way at times. It has to be a torturous thing to go through, because I can see in her eyes that she wants to communicate more, but she can 't. And for her to be as happy as she is most days and not complain, speaks volumes for who she is and what type of character she has and how strong and amazing a person she is. It makes me love and respect her that much more, yet it breaks my heart for I want talk with her and I can't. I guess I have to remember good things come to those who wait.

This is teaching me patience for I know I will get this opportunity one day, it just won't be in the here and now, rather it will be after Payten has a new body in the eternities and then her and I can sit and talk for as long as we want. This knowledge of the plan of salvation, is what gets me through these days, the hope in knowing that this is not the end and that Payten will be healed and made prefect and I will be there by her side enjoying these glorious moments with her, all while running, laughing, playing and communicating with her. This knowledge gives me the hope that I will hear the beautiful words, that I have to waited a lifetime to hear, the words, I Love You Mom and I know you love me, and I want to thank you for all you did to take care of me. That will be my greatest reward. That will make all the heartache, tears and suffering worth it!

I do all of this for Payten because I know there is a purpose behind everything and I know there is more to this life and that is what makes the sacrifice and heartache bearable. When I am down or I have moments of depression, I am quickly reminded that I have nothing to be sad about, for I am blessed beyond comprehension and I owe all of this knowledge and gratitude to my daughter for she has taught me how to be truly thankful for everything and that graditude is the true path to happiness and Payten has taught me just that, how to be grateful.

Though Payten had a few set backs today, I am still remaining hopeful, that is medication is going to be the answer and Payten will get through all of this and be stronger for it. I can't guarantee that this will be the case, but I will not let fear and doubt cloud my hope. I will strive to see the light through all of this, for I believe that there will be an end to all this torment and heartache she is facing. For I have come to know that there is light in everything and that all things come to an end and get better. I pray that tomorrow is a lighter and brighter day filled with more happy moments than sad. May God bless you all and may you all have a goodnight!

More good news!

It is amazing how smoothly your day can go, when you wake up early and get ahead start. Seriously, my day was great and I owe most of the greatness to the fact that I was able to get up and going early.  I have forgotten what a difference it makes. The saying is true, early to bed, early to rise, makes a man healthy, wealthy and wise! I am going to try and make this my new motto and see if I start noticing a difference in my days, as well as myself.

Today, was not that eventful, it was just our typical busy Wednesday. Payten had both Occupational and Speech therapy. Unfortunately, Payten slept through occupational therapy, AGAIN! This will be three weeks in a row that she has slept through it and she will be going on two months, that she has not been able to do O.T. But that should change, at least I hope that changes. I think if we give Payten another week or so, we will see her back to being able to do all her therapies. At least that is my goal for her as of right now. She did the best she has done in over two months, during Speech today! Yay! Both Payten's speech therapist and Zachary's OT said today, that she is looking a 100% better, from where she was, so we will take it and celebrate it. She is still sleeping more than usual, but I believe her body is still weak and is still working harder than normal, therefore she tires quicker. Again I hope that will change within the next couple weeks also. I am just relieved that we are seeing good changes and that makes me hopeful that things are going to keep getting better. Yay, for blessings!

Good news of the day is, Zachary graduated from Occupational Therapy. He finished the whole program. Not only did he finish it, but he finished it strong. His therapist said he mastered it and told him how impressed she was with his growth and determination. I can't begin to tell you how pleased I was to here those words. I too am proud, for he has come along way and it was very hard work that he accomplished. We went and got a treat afterwards to celebrate his awesomeness! All I can say is I love him and way to go Zachary, you make you Dad and Mom proud! This differences that we have seen since he started occupational therapy are phenomenal,  his spelling has improved, his focus is a hundred times better, he does not have letter reversals any more and his writing fluency has increased dramatically and the legibility is great, you can actually read what he writes now. Seriously, I can not begin to tell you,  what a difference Occupational Therapy can make. Next week Makenna goes into see Miss Meredith, to determine if she too would benefit from what Occupational therapy has to offer. Wish us luck! I hope we can see great improvements with Makenna through occupational therapy as well. Overall I am one happy Momma! I knew Zach had the potential, he just needed help finding it.

Before I go, I want to share a sweet moment in our day today, it was a moment, Emmett, Payten and I shared. I was in the kitchen and Emmett comes running into me, with a worried look, asking, "Where is Payten? Hook got her! Hook got her!" I picked him up and reassured him that Captain Hook did not get Payten, rather I put her in her crib because she had fallen asleep. The look of relief on his face was priceless and very sweet. Once I put him down, he ran over to Payten's crib, climbed up the rail, checked on her, smiled and said, Love you, Payten. Then he climbed down and kissed her hand and went back to watching Jack and the Neverland Pirates, because now he knew he could stop worry, for his sister was safe. I wish I would have captured this sweet moment, but I was not quick enough, but I do have a picture of another time, where Emmett had a similar moment with Payten,

 Isn 't this just the sweetest thing?! These are the moments that make a Mother's heart all warm and fuzzy, for she knows  that she is doing something right. The reason I share this with you is not to say look at my kids, aren't they awesome?! Rather I share them, to show you, that this is how loving, compassionate and protective all of my children are towards Payten. They love her so much, and are so watchful and mindful of her. So moments, such as today, when Emmett did not know where she was, they worry about her and try to make sure she is safe and cared for. It is amazing to see the love, compassion and protection they show for her. It teaches me how I need to be and therefore, I could not help but share. I hope you all had a good day and I hope you all have a good night, thanks for reading. Quickly I want to say, that we truly blessed to have the prayers of all of you. Things are finally starting to look up for our sweet Payter Tater and I know it is because of all the prayers in our behalf from all of you, so thank you. God bless and Good night.

Blessings just keep rolling in!!!!

The goodness just keeps coming and things keep looking up, which truly brings joy to my heart. However, with that being said, this morning started off a little rocky. I received a phone call from Payten's preschool teacher in regards to Payten's IEP meeting, which was today at 8:30 am. The meeting was necessary, in order to keep Payten's IEP current, so I was not upset at all that they were having the meeting without my presence. The teacher and I have talked on more than one occasion in regards to this and I knew there would be no changes made to the IEP as of right now, expect the fact that her placement would be switched from home bond to school instruction. This mornings conversation was to make sure I would be available if there were any questions from any of the member's on Payten's team and to let me know there would be some paperwork I would need to sign, and that is where the conversation turned unpleasant.

 I am not one who likes their integrity or honesty questioned. I try to hold true to these values and I strive to live a life of integrity and honesty, so when that is put into question, it does not sit well with me. Nor do I think it would sit well with anyone. As we were discussing paperwork that I would need to sign, one of the forms the teacher mentioned was, Willing, Ready and Able, meaning that the school is willing, ready and able to accommodate Payten and her needs, but for now, we (Payten's parents) are refusing services for reasons unknown. Which bothered me, for  we are not refusing services for reasons unknown, we have been upfront and honest this entire time that the reason we are refusing services is due to our daughters health, which is severely compromised right now due to uncontrolled seizures. When I said this to the teacher, her response was, "The district nurse has a difference of opinion in which she says that she has approval from one of Payten's Doctors stating Payten can attend school." (which is true, the nurse does have that from Payten's Pulmonary Doctor, however, that is not Payten's issue right now. Payten's issue is Neurologic. So, the statement from the Pulmonary Doctor is correct in that Payten can attend school from a Pulmonary stand point, but from a Neurological standpoint she can not, for her seizures are too severe and too often for her to be safe at school.) Which according to Payten's teacher, she told the Nurse these same thoughts, about Payten's issues and the fact that they are different now and therefore it would fall under a different Doctor's jurisdiction and approval.

Here is the Nurse's response, according to the teacher, "Parents can get a Doctor to say whatever they want, just to get their way. Therefore I am going to go with the statement from the Doctor I personally spoke with and not the statement from the Doctor which whom the parents spoke with. Which states, that Payten can attend school, so the parents refusal to send their daughter to school is not medically justified." Are you kidding me? Seriously? My daughter for the past 2 1/2 - 3 months now has been suffering greatly from seizures and she has the nerve to come in and say we are making that up or making a bigger deal out of it than it really is. How dare she make that judgment. I never went to our Neurologist and ask him to say anything, he brought it up and he told me how he felt and I respected his feelings and adhered to his judgment. I am just trying to do what is best for my child, not what is best for me. So, basically what it boils down to is that they want me to sign a paper stating that I am refusing school for my daughter, just to refuse school, no medical complications to back the refusal, all because a Nurse doesn't believe me? That is ridiculous and makes my blood boil. So I guess when I sign this paper, I will be adding onto the paperwork, a statement saying exactly why we are refusing services at this time and that our Doctor fully backs us on this decision, for it was his recommendation for her to not go to school at this time. Okay, I need to breathe! It's going to be okay! (you just saw Momma bear come out of hibernation for a minute!) Like I said I do not like to have my honesty or integrity questioned, but I guess I just have to chalk it up to ignorance and know that what I am doing is best for my daughter and that indeed I am telling the truth. It just really peeves me that someone would treat us this way.

Even though my day started off a little rocky, with my blood boiling, it got a lot better. We saw Payten's G.I. Doctor, Dr. Horvitz and Payten is doing awesome from a G.I. standpoint. She is growing and thriving and that is all they want to see. Payten as of today, weighs 40 lbs and is 3 ft. 6 inches tall, which put a smile on the Doctors face, for she is happy to see Payten growing so well and looking so very healthy nutrition wise. Payten did however, have a seizure in front of Dr. Horvitz, which made the Doctor a little sad to see, but all in all Dr. Horvitz, was extremely happy with Payten's overall nutrition health. She did send us over to the main hospital to get a KUB X-ray done to make sure Payten's G.I. track was clear and looking good. Which is always a surprise when one of Payten's Doctors, throws in an added twist to our day that is unplanned, but hey it makes life fun, right?!

 It really was not that bad. We only had to wait maybe five minutes and then we got the X-ray which took maybe ten minutes, so we were in and out super quick, therefore it did not even phase us really. On the way back to our car, we stop by Dr. Cooks office and left him a note, letting him know of the seizure activity Payten has still been having and when he called later to discuss the note, we decided to keep Payten on the Onfi at the current dose for another week and see if things have not improved. Which to be honest, even though she has had some seizures, I am still seeing improvements throughout the day. I am starting to see a difference in Payten's overall behavior and she is not hurting herself like she was. Also, I see Payten coming back to us. I feel that I am finally getting my Payten back, that we had lost there for a few months, which makes my heart happy. I can not begin to tell you how that feels, seeing my daughter come back to me, it brings tears to my eyes just thinking about it. It makes me that much more hopeful that we are on the path to full recovery from these horrific seizures and soon she will be back in that good place she was in, back in May, working on walking, talking, eating, etc. Seriously, Payten's life is a roller coaster ride and I feel like we have been dragged through hell these past couple months and now we are finally seeing the light, hallelujah! What a tender mercy this has been in our lives. I am feeling beyond grateful right now!

After Payten's appointment, we went home grabbed a few items, changed diapers, and then were off again, to another Doctors appointment, this time for Emmett. He had his 2 yr. well check today, which went really well. As of today, Emmett weighs 28 lbs. and he is 1 ft. 5 inches tall, he falls into the 50th percentile for weight and 95th percentile for height. He is my tall, thin, blue eyed boy and I love him to pieces. After his appointment, we went home and vegged out for the rest of the night. It was really nice. We also got Zachary ready for nerd day at school tomorrow. I know what you are thinking, he dresses up for school a lot! Yes, yes he does! His class has Wacky Wednesday, every week and each week is a different theme, tomorrow just happens to be nerd day. Here is what we came up with,

 

And this picture below,



I thought I would add just for the cuteness factor! It is Emmett's version of a pirate! Enjoy and have a good night! We love you all and appreciate all your love and support in our daughter behalf.