This Momma found her ROAR today and boy is she proud!

Phew! I am so glad to have this busy day over and done with, not because it was a bad day, but rather because it was a crazy day. The day started off kind of slow, for I was beyond tired from staying up way to late, therefore it took several hours for me to really get in to the swing of things, but once I did, the energy kept flowing, which was quite nice, if I do say so myself. Now, I wish I could say the same in regards to Payten, but unfortunately I can't. Payten had a similar day as to the one she had yesterday. Meaning, that she slept most of the day due to sustaining several seizures early on, this morning. It is truly disheartening to watch her go through this and suffer like she is. I feel as though her days of being awake and engaged, are becoming fewer and fewer, with little opportunity for play and interaction, which makes the time that we do get to spend with her, playing and engaging, that much more cherished, for we don't know how long those moments will last.

Honestly, it is hard to go through, because as a parent, you want what is best for your child and sleeping the day away is not quality, rather it is just quantity and no parent just wants quantity of life for their child, but rather they want both quality and quantity and I feel as though we are being stripped of the quality and that there is absolutely nothing we can do about it and it is literally killing me inside. However, with that said, we do have a few more days to see improvement in Payten, in regards to the increasion of seizure medication, and hopefully we will see improvement because of that increasion, for if we don't, then that will be the determining factor that tells us, that it is indeed her neurological disorder and that she is indeed declining neurologically from it and not just solely declining due to seizures, which will mean that she will have to endure more tests, which will help determine how fast and severe the progression actually is, which will then help us to know a little better as to how rapidly things will continue to decline. Therefore, I want to sincerely ask, that if you do believe in the power/miracle of prayer, please, if you will, keep Payten in your prayers, for she is in dire need of them.  And we ask that if you do pray for her, that you sincerely ask for the will of the father to be done, whether that be to help her get better or to have her return home to Heaven, either way, all we want, as Payten's family, is what is best for Payten and we sincerely believe that the will of God is what is best for her, whatever that will may be. So please, I am begging you, pray for my daughter, because she sincerely needs those prayers.

Now, before I move on with sharing about the rest of my day, I want to share something that I shared on instagram today, which was a picture of all the medications Payten receives daily,

The reason I felt inclined to share this with all of you, is that I feel as though, I am constantly talking about the different medications Payten receives, but sometimes just talking about it, does not help you in understanding just how much she is really taking, until you actually see a picture of all the medications. Therefore that is why I took this picture, in hopes that it helps you to understand just how much medication this little five year old girl needs take in order to help her to  sustain life and it is crazy just how much it really takes, isn't it?! Also, not only did I want to share this picture with you, but I also wanted to break all the medications down for you and explain all the different ones that Payten is on, so that you may understand what all is depicted in the picture and why she takes what she does.

The list of medications that Payten takes twice a day are,

Onfi (seizures), Vimpat (seizures), Q-Dryl (antibiotic that she will be finished with in a week), Cirprofloxacin (another antibiotic, that she will finish within the week) and Pulmicort (nebulizer medication for breathing).

The list of medications that Payten takes three times a day are,

Leucovorin Calcium (cerebral folate deficiency), Guanfacine (facial dyskinesia), Senimet (GTP clyclohydrolase deficiency), Vitamin B6 (GTP clyclohydrolase deficiency) and Clindamycin (antibiotic, that she will finish in a week from now), Plus, she takes Albuterol, which is another nebulizer medication that helps open her airway and that is PRN, which means it is given to Payten on an as needed basis, every 4 to 6 hours.

 And there you have it, Payten's list of daily medications, that she receives at least twice a day, if not three times a day. It is a crazy, long list, isn't it? And to say it is a tedious task, would be an understatement, for it gets very tiring, giving her the same medications daily, but you do what you have to do and these medications are necessary in helping Payten to sustain life, therefore we give them to her in hopes that we are doing what is best for her, in hopes that it is giving her quality and not just quantity of life. Now that you have a better understanding of all the medications, Payten takes regularly,  just imagine having to spout off that list of medications, along with the dosages, etc. at each and every Doctors appointment Payten has and welcome to my world! LOL! Good thing I have a good memory, for I don't know what I would do if I didn't. I guess, I would be constantly printing off a med sheet every time I took her to the Doctor, to hand to them, knowing that if I didn't, there would be no hope in them getting a list of medications from me. Also, let me just say, that I am beyond grateful that we do not have to fight with her to take these medications by mouth, due to the fact that Payten can not take anything by mouth, therefore that is why we have the G-tube, which allows us to push all these disgusting medications through. Seriously, what a blessing that has been, for can you imagine having to try and give all these medications to a child by mouth? Seriously, it would be pure torture for the both of you and they would never get them, rather you, the parent, would be wearing the medications instead. So like I always say, there is a silver lining to everything and in this circumstance, the G-tube is our silver lining.

Okay, moving on! As most of you know, a couple weeks ago, we met with Makenna's teachers to discuss how Makenna was doing in school and her teachers shared with us that they felt it would be in Makenna's best interest to stay back a grade, due to social immaturity, which Joseph and I completely disagreed with. Which caused that meeting to end with no solution as to how we were going to help Makenna and her situation, therefore we had to schedule another meeting, in which there would be more facility present, in order to try and help persuade us into the direction they wanted us to take, which was to keep  her back a grade. However, they do not know how stubborn Joseph and I can be, especially when it comes to our kids and their best interest. But with that being said, something that you may not know about me, is that I detest anything that could result in conflict/contention, therefore I am one that does not like to stir the pot/rock the boat, which usually ends in me giving in and going with the flow, in order to avoid conflict.

However, today was a different story. Today, I found my ROAR and was able to unleash my Momma bear side! Something came over me, which helped me to find my inner strength and helped me to  realize that not only have I grown in patience and love, since Payten came along, but I have also grown in assertiveness and strength, which I feel came from parenting Payten  and having to advocate for her. Which worked out in my favor today, for all of these traits came in handy. Now let me explain,  I went into the meeting sick to my stomach, panicking that it was going to end in contention and I left the meeting, feeling opposite! For I left the meeting feeling as though I had the EYE OF THE TIGER in me, now laugh in you must, but I am being serious, that is how I felt! And to make it better, I had Katy Perry's ROAR song going through my head, for that is how good I felt after the meeting! For I allowed my ROAR to be made apparent, rather than just backing down and giving into their ways, in fear that there might be contention. Can we say, awesome?! Because I was awesome today! Believe me, I am beyond proud of myself, for I jumped a huge hurdle today, by standing up for what I felt was in the best of my daughter. I believe that by being assertive and going into the meeting prepared and ready, knowing exactly what I want, helped me to be able to get what I wanted accomplished.

I was able to have the school agree that retaining Makenna was not the best idea, but rather, we needed to look for the real problem and address those problems, which I feel has something to do with her pragmatic language skills. So because I was composed, yet assertive, we were able to leave the meeting with an actual game plan, that will best help Makenna to be successful and it is all due to the fact that I was able to pull from within me, my inner strength, that Momma bear side, that is within all us Mommas and use this to help myself to stand up for my daughter and advocate for her, which I believe is owed to Payten and everything I have learned from parenting her, as well as prayer and the miracle that prayer can be. The reason I add prayer to the mix, is because right before the meeting, I said a prayer asking my Heavenly Father to help guide me as to what to say and I asked him to help me to fluently and eloquently say those things, all while being assertive, yet composed, which is exactly what happened. So again, I am thankful for the gift of prayer in my life and how it blesses me daily!

So like I said, I am glad that this busy day is over, not because it was a bad day, for in all actuality it was a good day in many ways, but rather I am glad it is over because it was a crazy day. Now, before I go, I want to leave you all with some food for thought,

"Crap Factory

Are you a crap factory? And by that, I’m asking, do you manufacture your own unhappiness? All it takes to be in the crap producing business is to be pessimistic, negative and saturate your world with feelings of resentment and ill will. Oh yeah, don’t forget to tell everyone how bad things are and that you will never be satisfied. Being a crap producing factory is ...one of the easiest things in the world to accomplish.

A person becomes a crap factory by thinking crappy thoughts on a regular basis. If you habitually feel that everything is going to turn out bad, or that other people are getting what they do not deserve and you are not getting what you deserve, you’re not only stepping in crap, you’re producing it. "I will be happy when I get some sleep, when I make a more money, when I lose weight, or when my significant other helps out more". When you think and say things like this, you are creating pressure, stress, isolation, anger, frustration and what you're really saying is, "I will be UNHAPPY until these things happen..."

Crap factory describes what so many people do – they manufacture their own unhappiness. You are a factory of some sort. Every day you are either manufacturing something good or you are manufacturing crap. There are so many things in life that are out of your control that lead to unhappiness, it is silly to make the pile higher by producing your own brand of crap. A large proportion of the crap in the average person’s life is self-manufactured. If you don’t consciously decide what you produce at your factory each day, your environment and your past experience will determine it for you. Bad crap happens all the time to good people, just make sure you’re not adding to the pile by producing your own crap."

A friend of mine posted this on facebook, which she shared from a friend of hers, which I am unsure who that friend is, as am I unsure as to who the author is to this awesome food for thought, therefore, I can not give credit where credit is deserved, just know that I did not write this, I just thought it was worth sharing. The reason I share this food for thought with all of you, is for the mere fact, that I feel it goes quite well with what I always say in regards to perspective and how life is all about perspective. For I truly believe that in life, we have a choice as to whether we see good or bad and that whatever we choose to see, is what our life becomes. Which means that if we choose to only see bad, then our life will be crappy, but if we choose to only see good, then our life will be happy, but like this thought says, it is all up to us and what we choose to see. However, I know it is hard to see the good all the time, but if we really take these words to heart and we really try work on seeing the good that life has to offer, then we will be living a much happier life, which will then in return help to make the world a better place, etc. Therefore I leave this food for thought with you to ponder and think about and I say to all of you, thank you for your kindness, love and support, you all rock and I appreciate all of you. May you all have a good night and a great day!

Me, crazy?! Nah, well, maybe?!?!

I could not help but post this, because I know people think I am crazy at times and to be quite frank, I am crazy at times, hence the Unicorn! Seriously, anyone who knows well, knows that this could be a real conversation that comes out of my mouth, especially if I have just taken a pain pill,  for I am a little crazy and I do like unicorns, so it is quite possible, especially with all the stress I have been under these past few days. I literally feel as though I have gone a little crazy and so therefore if I had a choice, I would ride away on a Unicorn, but before I did, you better believe, I would slap someone first! There you have it folks, a true, yet random fact about Kim Merrill, get a good laugh from it, if you may, for that is why I posted it!

Anyways, in all seriousness, I have had a crazy weekend, filled with stress. With Payten's complication's and Makenna's baptism, that was Saturday, as well as her Birthday and now Thanksgiving right around the corner, I have been a little stressed, which has sent me a little over the edge and has left me feeling somewhat crazy! I know it has been a few days since I posted, which is solely due to stress and life in the way. Now,  the last post I shared on here,  I stated that I had a Doctors appointment for Payten and that I was hoping that I would leave that appointment feeling more hopeful, but unfortunately, that hopeful feeling did not happen and that is where I want to begin this post, with Payten's appointment with her Neurologist.

Friday morning, I took Payten in to see her Neurologist, due to complications she was having, that her other Doctors felt strongly were stemming from the Neurological side of things and I was hoping that after I saw Dr. Cook, I would leave feeling a sense of hope, in knowing what was happening and how to help, but that did not happen. After discussing with him everything that has been going on with my sweet girl and him seeing a few things while we were there, it was concluded, that he can not be 100% sure as to what is going on, but he hopes and prays that it is seizures. Therefore he decided that we should double the amount of seizure medication she is on and hope that it fixes everything, however, if it does not fix it, then we know it is not seizures, but rather, it is her Neurological disorder, that is progressing and if it is that, then there is nothing we can do about it, other than allow it to run it's course and wait and see what happens, which most likely will end in a not so fortunate way. To say I left his office sad and defeated would be an understatement, but at least we have an idea of what is happening and hopefully the seizure medication will help her and if it doesn't, then we know we tried everything and it is what it is and we have to accept it for just that, her disease and it's progression. As hard at that will be, I have to have faith that no matter what, it will all work out, for everything happens for a reason. When I got home later that day, I saw this quote on facebook and I believe it sums up how I was/am feeling in regards to this matter, and it states,

Today, especially, has left me confused and wondering, what actually is the cause of all of these complications Payten is facing, for I just do not know anymore. Payten slept all day long, today, which could be a sign of both things, therefore I am left questioning if death is really upon us or if things will get better as the increased medication takes affect and believe me, it is the hardest feeling/thing that I have ever had to face. But I know that I need to remain strong, especially for Patyten, for if I remain strong, it will help to assure her, that she knows and understands that I want what is best for her and that no matter what happens, I will be okay, as long as she is okay, for I do not want her enduring this pain, especially if she is only enduring it,  to prevent me from pain, but rather, I want her to be free of this turmoil, therefore if it must be that she goes home, then it must be, and I will be okay with it,  as long as she is free and happy, for that is all that matters. Yes, I will be heartbroken to have to say goodbye, but I will get over that heartbreak and I will move on knowing that she is in a better place, enjoying her days free of this awful pain and grief. But for now, we will do what we can, be increasing her seizure medication and we will give it a week to see if it is does indeed change anything, and if it doesn't then we will go from there and let time take it course and wait for the clock to run out, and while doing so, we will cherish what time we do have and enjoy every second we have with her, whether it be awake or asleep, we will enjoy it and make every second count.

As you can imagine, after her appointment, I was completely and totally drained of all emotion, both physically and mentally, therefore I was beyond excited that we had lined up a sitter, so that Joseph and I could go out. Even though we just ran around doing errands, trying to get all the odds and ends done that were needed for Makenna's baptism, I was still beyond excited to just get out of the house and enjoy time away with my handsome husband. After we ran around like chickens with our heads cut off, making sure we had everything in place for the baptism, we made a very unwise decision in deciding to go and see the Hunger Games movie, Catching Fire, at 10:30pm, which left us getting out of the Theatre at 1:15am, which left me up until 5am, because I had a lot of food prep and other things that needed to be done before the baptism. Which left this Momma tired, frazzled, stressed, confused and grumpy, which is not how you want to feel at your child's baptism, but that is what happened, for I made a poor choice and therefore I to deal with the consequences. To be quite frank, I was sad that I was so out of it, because first of all, I do not remember a whole lot from Makenna's special day, because I was so tired and I was worried about what all was going on around me and second, I did not get the pictures I wanted, due to the fact that I was so out of it and forgot to take them! Oh well, such is life and missing a picture or two is not the end of the world.

Thankfully, even though I only had two hours of sleep, Makenna's baptism went without a hitch and turned out just like I had planned, which ended up being quite beautiful. I was so happy it went so well, and I want to say thank to everyone who came and shared in this special moment with Makenna, I know it meant so much to her, to have each of you there for her baptism. The best quote after the baptism, that Makenna said, came after I asked her what her favorite part about being baptized was and she looked at me and said, My favorite was all the money and presents I received! LOL, at least she is honest, but seriously, I really do think that she had a lovely time and that she felt the spirit of the Lord and was truly excited for herself for that fact that she chose to follow in her Savior's example and be baptized. After the baptism, we had a fun filled day of shopping and present opening. Here are some pictures of her day, at least pictures I remembered to take,

 

This is a picture of Makenna's birthday cake, sorry it would have been a lot prettier if I would have captured it before we had cut into it, but hey, it still shows you what it looked like and it is still super cute, like Makenna!

 

 

This is a picture of Makenna, at her baptism, with two of her best friends, Harlee and Jordyn. Which I must say, Harlee, gave Makenna the sweetest note, I will not give all the details of the note, but it was a note, wishing Makenna a happy birthday and in the note, it stated that Makenna is Harlee's absolute best friend and how kind and sweet she thinks Makenna is and how she feels as though Makenna is part of her family. Seriously, it does not get any cuter than that! I pray these girls remain the best of friends for life, for they are the sweetest of girls and they love one another so much! Thank you Schad family for being at Makenna's baptism, it truly meant the world to her, to have you there.

 

The pictures below are of Makenna, later that evening opening presents,

 

 

This is a fashion sketch pad that Makenna can use design her own clothes, etc. She was super excited to get it!

 

 

Then she received one of her most favorite things, an American Girl doll and book set, Makenna is in love with anything American Girl right now.

 

 

Dad and I caved and got her some hair chalk, for she has been begging and begging for some, since Harlee got some on her birthday!

 

 

Here is something else she has been begging for, a Craft loom, so that she can make these rubber band bracelets that are all the rage right now amongst little girls and boys her age.

 

 

And no birthday would be complete without a Barbie doll and her favorite movie doll, Mirada! Makenna's favorite movie right now is Brave, therefore she was stoked when she open this gift and found Mirada!

 

And last but not least, Makenna received her own set of scriptures! No eighth birthday would be complete without a set of scriptures, at least no Mormon, eighth birthday that is!

 

All in all, her birthday turned out super cute and I am thankful it turned so nice and so that it is over, because now I can stop stressing about that and move on to the next stressful thing on my list! Even though the past few days have been a mess, filled with stress, I know that I am blessed and that I have a great life. I need to remember that it is all about prespective and that as long as I am doing my best and putting forth my best effort, that is all that matters. It truly does not matter how it turns out, as long as you do your best. Now because I feel that the quote below does a great job expressing how I feel, regarding this matter, I am going to share it with all of you, for I feel is fitting for all us Momma's out there to remember what it says, and the quote says,

 

Though this is hard to keep in mind sometimes, I need to make a conscious effort to remember just how awesome I am and that no matter what, I am doing a great job, for my children know they are loved and I know I am doing the best job I know how. Before I leave I want to thank the ladies who invited me to go out tonight, on a much needed Girls Night. You do not know how much I truly needed the break, so thank you for thinking of me, it was great fun. I also want to say thank you, to all of you, for all your love, support and prayers, I feel all of it and I appreciate all of it, so thank you and I hope and pray that you all have a blessed night. As for me, I better get into bed, for tomorrow, oops I mean today,  is going to be a busy day, especially considering it is when we have our second meeting with Makenna's teachers, so a good nights sleep is a must, in order to be at my best. Please pray that I can advocate to the best of my abilities, for sometimes I shut down, and in this circumstance I can not do that, so if you will, please pray for me and send good vibes my way, so that I can do right by my daughter and advocate for what she needs. Again I hope and pray you all have a blessed night and a great day tomorrow. Much love and God bless.



Another day filled with seizures.

Today was another day that was lacking that zip that I was talking about in yesterdays post, and boy did I need some of that zip today. I had a hard time sleeping last night, due to the events I talked about in my last post, therefore I had a hard time getting up and going this morning. All through the night I kept waking up to check on Payten, to make sure she was okay and every time I would do so, I would start crying, for the worry would take over me, leaving me to feel pain and sorrow. I just could not seem to get my mind to be at peace with everything, which left me restless and tired this morning from the lack of sleep I got last night. So you can imagine how my day went. Very blah and boring is right! After waking up and realizing I had no energy and probably was not going to get any, anytime soon, I decided, that it would probably be in my best interest, as well as Payten's best interest to cancel her Orthotic appoint in Phoenix today, due to Payten not feeling well and I am happy I did, for Payten did not have a good day whatsoever. By canceling this appointment, it opened up my day to be free of any real comments, which it allowed to feel like I could have a laid back type of day, that was geared towards hanging out with Emmett and Payten, playing games and watching cartoons. What Mom doesn't want a day like that?! Seriously?!

However, Payten had other plans. Shortly after I woke her up at 9am, she had a couple of seizures, which left her in an unconscious state and had her back to having the weird breathing patterns she was having yesterday. It was quite frustrating to see her go through all of this and it made me quite angry, for I do not understand why this is happening? I do not understand why we can not get these blasted seizures under control? And quite frankly it is really upsetting me and I think the real reason behind why it is upsetting me so much, is because,  I do know why we can not control the seizures and I do know why this is happening, but I don't want to accept truth nor believe it, for that would mean I would have to accept the fact that my daughter is getting closer and closer each and everyday to death and no Mother or Father wants to accept that truth, ever. So instead of enjoying my morning playing with Payten and Emmett, I rather spent my morning attending to my daughter, trying to get her as comfortable as possible, while trying to get her labored breathing calmed and normalized. And I did all of this, while crying over the fact that my daughter is not getting better and probably will never get better, which is slowly, but surely breaking my heart. After I was through releasing all my tears and frustrations about Payten and the things I can not control, I basically held my finger up to my responsibilities for the day and decided to hang out with Emmett instead, lounging about, watching cartoons, while looking at facebook and playing games. It may not have been the best day, filled with productivity, but hey, it was a day that was well spent trying to take my mind off of the stresses in my life and hey, I must have done something right, for my right eye finally stopped twitching. Which believe me, this is a miracle in itself, for my eye has been twitching since Payten went into the hospital last month and so, I am thankful something good could come from today and that the relaxation I received helped to relieve some of the stress I was having, which stopped my annoying eye twitch!

Thankfully the Neurologist called me back today, which helped to relieve even more stress. After talking with him, he agreed that Payten's issues were worrisome and that he needed to see us as soon as possible. Therefore he made a few phone calls and found a family who was willing to reschedule their appointment, so that we could get in first thing tomorrow morning. He said that he was thankful he found somebody willing to do that, for now he would be able to sleep, knowing that Payten will be seen tomorrow, for he is very worried about her. Hearing him say this, made me realize how much he cares for and loves my daughter. Seriously, I believe Payten's Doctors have a special love for her, due to the fact that they have been with her since birth and they have put so much time and love into seeing that she has the best quality of life. We love our Doctors, they have truly become like family to us and we appreciate all the things they do for us, especially the extra little things they do on Payten's behalf, like calling and seeing if another family can reschedule, so we can take their place. The Doctor went on to apologize for not calling last night, he said he was going to, but by the time he finished at the hospital it was 12am and he did not want to wake us, nor call us, for he was finished with his day,  therefore he added Payten to the top of his to do list for the following day. What a sweet and loving Doctor he is. I just hope and pray that he has some answers on how to help Payten to be comfortable and not suffer from all of these complications she is having to face right now. I have full trust in him, that he will do everything he can to ensure that Payten receives the help she needs. What a blessing it is to be able to trust in her Doctors, for when you are dealing with a sick child, a good, kind, understanding, loving, compassionate, smart, Doctor is vital and extremely important and we are lucky to be able to say that all our Doctors have the these qualities. It truly gives a peace of mind knowing our daughter is the best of hands possible and that makes my heart at peace too.

I pray that tomorrow is a better day and that our appointment goes well and that I can leave the appointment with a new found hope and a game plan on how to best help Payten. I pray that I can have peace of mind tonight, knowing that we see the Doctor in the morning, to the extent that I can get a well rested, good nights sleep, which will help to ensure that I will be able to wake up on time, filled with the energy that is needed to get everything done, so that we can get to her appointment on time. Even though my day was filled with tears and frustration, I know that I am loved and extremely blessed, therefore I can not, nor should not complain too much about life, rather I need to be grateful for everything, one being, that even though Payten's health may be declining, at least she is still here, blessing us with her sweet spirit. What a beautiful blessing that is and that is not the only blessing I have, so I need to keep my mind focused on the good, in order to try and drown out the bad. I love you all and I appreciate all of your prayers in our behalf, I know they are being heard and answered, so again, thank you for that. I pray that you all receive the well rested sleep your bodies need and that you have a blessed day tomorrow. Good night my dear friends and God bless each of you.

Oh boy am I left tired and a little scared, from the events of the day.

This quote made me giggle, therefore, I felt the need to share it. Honestly, it does sort of fit the past couple days I have had, because when I think of zippity, I think of fun, lightheartedness, laughter, randomness, etc. and though my days have had all these things in them, well sort of,  it is still not the same, for these things have been presented while under a little more stress than normal, therefore it just doesn't fit that zippitiness that a day should have! So yes, my days have been lacking the zippity of my do dah day! In all seriousness though, things have been a little stressful, but okay.

Yesterday was my go, go, go day. From the time I woke up to the time I went to bed, it was go, go, go! Zachary had his annual IEP meeting yesterday and it went pretty well. Do I wish that his principal was a little kinder and more understanding towards his needs? Yes, but all in all we were able to come to agreements and we were able to figure out goals and plans that will help Zachary to succeed and that is all that matters. However, with that said, the process of an IEP meeting, can be extremely exhausting. Anyone who has endured a meeting such as this, knows exactly what I mean, for it is hard and very tiring when you are advocating for your child. But you have to do, what you have to do, because if you don't, no one else will, because you are the only person who has your child's best interest at heart, therefore you have to fight that exhausting fight, sometimes.

The IEP meeting was not the only thing that kept me going yesterday! I kind of wish it had been the only thing, but alas that is not my luck, nor my life! Yesterday was filled with a therapy, a doctors appt., and cub scouts. Which all of those things can be tiring just by themselves, but when there smashed together, it becomes exhausting and then add a 2 yr. old into the mix and you have yourself an insane day! No wonder I dropped when it was all said and done! Seriously, if it were not for my down time, that I spent vegging out, watching HGTV, I do not know what would have happened, I probably would have ended up in a straight jacket and Emmett would have been the driving force behind it! LOL!

 Seriously, I do not know what got into Emmett yesterday, he was a pure terror. He had his hands into everything and I mean that quite literally. When I was prepping dinner, he got into the eggs and cracked four eggs on my floor! Then while I had my back turned, cleaning it up, he took a big bite out of the raw chicken I was prepping. Thankfully he did not swallow it, but I still am keeping an eye on him, because it was raw chicken and I don't need him hospitalized, due to samonilla poisoning. Lets just hope he does not get sick! Then, after I took care of that fiasco, he decided to try and pour himself a cup of apple juice, which you can imagine what an epic failure that was. Yes, there was apple juice from one end of my kitchen to the other! And while I was cleaning that up, this budding artist of mine, decided he would practice his artwork on my tile floor in the hallway. To say I was running around like a Madd  Woman with her head cut off, would be and understatement, but hey, I guess you could say that Emmett added a little zip to my do dah/busy type of day, right?! Haha! Honestly, it was quite funny and even though during that moment I wanted to pull my hair out in frustration, I am happy I was able to remain calm, yet firm, but loving, all while trying to teach him that these things were not acceptable things to do. At least now I am laughing about it and can say he is a total cutie pie, whom I love, for if I couldn't, that would make life miserable and no one loves misery, so lets all remember to laugh a little more, especially us Mom's who can relate to situations like these!

One of the things I mentioned that was part of our go, go day yesterday, was a doctors appointment. Payten had an appointment with her Pulmonologist and I was sincerely hoping to receive some answers as to why she is doing some of the things she is doing, such as requiring oxygen whenever she is sleeping, and unfortunately, I had no such luck! Basically, I was told that by reinserting the trach, it should have fixed everything and because it has not, it is most likely not respiratory, but rather neurological. Which is not the answer we want to hear, but it is the honest answer and we have to take it with stride. He did however, put her on a couple of antibiotics, just to be safe, for she was showing symptoms of respiratory infection, so he wanted to be safe and take care of that, in case that was playing a roll in all these complications, but even those she had those symptoms, he still felt strongly that it was not a respiratory matter and his main advice to me was, to go and see the neurologist, for he feels strongly that Dr. Cook, will be the man with the answers. I came with hope and I left feeling sad and defeated, for the doctors words, solidified to me that the feelings I have been having in regards to Payten are right and she is indeed on a down hill slope, Neurologically speaking.

And today solidified it even more. Let me explain, today was not as go, go, go, as yesterday, however, it was a lot more stressful, due to some complications Payten experienced. At first Payten seemed to be having a really good day, she seemed to do a lot better during her O.T. session, which pleased us greatly. However, after O.T. she took a turn for the worst. Payten was so exhausted from O.T., that she fell asleep shortly after her session and while she was asleep, her breathing patterns became completely and totally off, meaning, she would take a couple breathes and then she would stop breathing, then take a couple breathes and stop breathing. This went on for quite awhile. Payten's speech therapist was present for most of the complications. During all of this, we had her hooked up to the pulse oximeter, monitoring her heart rate and oxygen levels, which were totally all over the place, meaning, her heart rate would be really low one moment and go really high the next and her pulse was in conjunction with the machine. But what was odd, was her oxygen did not seem to correlate with her not breathing, but we know she was not breathing, which makes absolutely no sense, because her oxygen should have been dipping with the non breathing patterns and they weren't.

And while all of this was going on, the therapist and I were trying to wake up Payten, but she would not arouse at all. She would respond with some movement, but she would not arouse. It was making us quite nervous, to say the least. Then all of a sudden, out of no where, while the therapist was cradling Payten in her arms, Payten's eyes shot open, she sat up and she started shaking and her tongue started convulsing/shaking uncontrollably, with her heart rate going from 80 to 150 in a matter of seconds and during all of this, she was moving about, like she was awake, but she wasn't, for her eyes were completely glossed over and then after a minute or so, she went limp and finally came to, but then she started choking and I mean choking. You know that sound you make, when you are choking, but still are getting a little air? Well,  that is the sound Payten was making. Which lead me to believe that maybe she had a plug in her trach, but when I checked, she didn't have one. Then, all of sudden, she stopped making that sound and her O2 started to drop and her heart rate went really low and she went very pale, meaning she was not getting air. So I jumped up to grabbed oxygen and her amboo bag and while I was going to get those things, she stopped and started breathing again. Seriously, right at that moment, I wanted to just drop to my knees and sob, but I am shocked at how composed I remained, even though on the inside I was a mess.

Once Payten finally came to and stopped choking and started to breathe, she was totally fine. She acted as though nothing had happened. And the therapist and I were both left, wondering what just happened?! I mean, she should not have not had an episode of choking at all, due to that fact that she has an open airway, therefore she should have been able to get air, therefore the only thing I can think of, is that her brain stem was misfiring, which caused Payten to not get the signal to breathe and so on. And the whole shaking episode leaves me wondering if it was in all actuality a grand mal seizure, which would be new for Payten.  Which in all actuality, Payten having these episodes, scares me to death, for what if this choking episode were to happen at night and Joseph and I did not wake up in time, what then? Would it end in a fatal mishap? These are the situations that leave us, the parents,  wondering, if we did the right thing by not calling 911 or taking her into the hospital. During these times, we are left with the question, should we have called 911 or taken her to the hospital? We are left questioning this, because we know the list of things that the doctors tell us to call 911 for or bring her to the hospital for if any of the things actually happen, and many times, Payten does all the things on the list, which makes it hard, because if we just went by that list, then we would be calling 911/rushing her into the hospital, all the time! Therefore we have to use our knowledge and understanding and put all of the equipment we have to use, such as a pulse oximeter, oxygen, and amboo bag, etc and realize that we are comfortable with these things and we have the training in CPR , therefore, we have to go off of our gut instinct and do all we can do, which causes us to wait longer than most would, in regards to calling 911 or taking her into the ER, but still, sometimes it leaves us questioning if we indeed did do the right thing, even though it all turns out okay in the end, it still leaves us questioning our judgment. Hopefully all of that makes sense.

Even though the events of today, turned out okay, I was still, like I said above,  left wondering if I did all I should have done. I was also left with the events replaying over and over in my head, which left me going over what I could have done differently, etc. and that is exhausting. Now, you will be pleased to know that I did leave a message with the neurologist, however, he has not called me back yet, which is not a big deal because Payten seems to be fine right now, but if she were not fine, you better believe, I would be calling and bugging him until I got a phone call back, but I know that it can wait, however, I also know that it needs to be addressed, therefore if I have not heard from him by late tomorrow morning, I will be calling back and leaving another message. Unfortunately, because I have not heard from him yet, I am now, on pins and needles, for the only explanation I can come up with regarding all of these events, like I said before, is that it is her brain stem not functioning properly and if it is indeed her brain stem misfiring, then that is scary, for that controls everything your body does, therefore if it is misfiring, whose to say it won't misfire a signal to the heart, which would result in her heart not beating or if it misfires a signal to breathe, it would result in her not breathing, etc. which leaves me feeling like the nightmare I have had since she was born could possibly happen and that nightmare is, that I wake up, to find my baby girl, dead. I know that is morbid and sad, but it is true and it scares me, quite literally.

Therefore right at this moment I am left feeling extremely lost and alone, not knowing what to do. I feel as though no one has any answers and it is frustrating. I hope and I pray that the Neurologist will have some answers and if not, then I will be calling the Pulmonologist to see if he has any suggestions, for I do not want nor need another episode like the one Payten had today happening again. Her speech therapist left in tears, begging me to call the doctor, for she was concerned that Payten would keep having problems, which thankfully Payten did not, but still, it was scary and left us all feeling worried. So now you know why I said, that my days have been lacking in the zippity of my do dah days! Even though there was a lot of excitement these past few days, I do not believe it was the zippity defining excitement that I am referring to! So hopefully tomorrow that zip will come! But please in all seriousness, if you pray, pray for Payten, for she needs prayers right now. I am unsure as to what the future holds for my sweet girl, but I do know that her health is not good and that no one seems to be able to tell us why that is, which leaves Joseph and I feeling very scared, lost and alone, so please understand if we seem little off, we most likely are, which would be due to the fact that our minds are being overloaded with concern for our daughter, so if you could, please pray for us as well. I love and appreciate you all and I hope you all have a blessed night and that you all have a little bit of zippitty in your do dah day, tomorrow.

Thursday night I reached my breaking, but I seem to be getting back to normal today and thank heavens for that!

I think this is the longest I have gone between post, since I started my goal of posting daily and all I can say is that life got the better of me, quite literally. This past month has been pure hell on my body, mind and spirit and I believe that I have done a pretty good job holding myself together threw it all, with maybe a few minor breakdowns, but nothing too major, until this past weekend. Honestly, I do not know what triggered it, all I can say is that Thursday night I had a major breakdown, emotionally. I cried, until I could cry no more and all because of the harsh reality of my life and everything it entails. It sent me into a state that took me four days to completely come out of. I did what I had to do as a Mom, but once those necessities were complete, I totally and completely checked out. All weekend I was a ticking time bomb of emotion, with no clue of what or who would set it off. Thankfully no one or nothing really ever set it off, but believe me it was there and it definitely could have exploded, which I am beyond grateful it did not, for I can not fully comprehend or want to comprehend, the damage that it could have or would have caused.

Yesterday, was my day to go to church, since Joseph and I are having to take turns due to Payten's declining health. However, due to the emotional state I was in, I could not go. I actually started to get ready and then, had a complete emotional breakdown, for I could not imagine being around people and putting on a poker face, portraying that all was okay, when in all actuality, on the inside I was completely and totally crumbling/falling apart. Therefore Joseph went in my place. Honestly, as much as I wanted to go and be rejuvenated in my mind, body and soul, I truthfully, could not handle the social aspect of it all. During these times of heartache, pain and sorrow, I have come to find, that social situations are beyond bearable for me. Through the years, I have found that I have become an extremely introverted person. The only explanation I can find for it is, that it is a survival mechanism, that has helped to keep me as sane as possible. I honestly, I do not believe that I could handle much more pain than I already am faced with, therefore it is easier for me to shut people out, then to let them in, in fear that they might hurt me, more than I already am. This is a raw truth, that is hard for me to share, but easy for me to do behind a computer. I guess I felt it necessary to share, for the fact, that maybe you could understand the depth of the pain, Joseph and I face and that maybe you could understand why we are the way we are and why we act the way we act at times, if that makes any sense at all, which I truly hope it does. All I can say is that my heart has been broken more times than I thought it could be, due to all of these harsh life truths that I am faced with regarding my children, etc. and so to keep my heart safe, I keep people at a safe distance. It may sound sad, but it is true.

Last night, I got on here to blog and I kept falling asleep while doing so, which made me think that maybe that was a sign that I needed to stop blogging and go to sleep, which is what I did. I believe that with Payten's health declining and the meeting with Makenna's school and all the research I been doing in order to be prepared for the next meeting that is to come, as well as having sick kids and a house to run, on top of holidays and birthdays coming up, etc., it all, totally threw my body for a loop and all my brain could do was shut down. As much as I hate checking out at times in life, I have come to find that sometimes that is the only way to get through life. Thankfully, these check out moments typically do not last very long and I am able to pick up the pieces and rebuild a somewhat stronger foundation, that hopefully can withstand the next storm that soon will head my way. It does not mean that, the next storm will not cause me to fall, but it does mean that maybe, it will ensure that the fall is not as hard. I just have to realize that I can not do everything and I can not control everything and sometimes I just need to let go and allow things to happen or fall into place. This a lesson that I feel, I have been learning, but am still trying to master. It is so hard to not be able to control what happens to your children, especially as a mother. As a mother you want to fix everything and I am learning, as I watch one of my children slowly die, that I can not fix everything and believe me, it is beyond hard to grasp and except, but I am learning and I am trying to let things go as best I can.

I know I said this in a previous post, but I am not going say it again, I can not believe how much I have forgotten in the few months Payten was decanulated. Seriously?! It is insane to me how much we forgot! Not only did Joseph and I forget about how often we had to suction and how little sleep we would be getting, we also forgot how much we have to take with us, when we go out and about with our sweet Payter Tater in tow. It blows my mind when I think about it and when I  think about how long it went on as being my normal for so many years. So  let me explain what going out with a trach entails, we have to make sure we have oxygen and her pulse oximeter, as well as her suction machine and suction catheters and an optorator (which is the little piece, that helps to get the trach back in if it happens to come out.), and trachs and trach ties and saline, in case her secretions become thick, and much, much more. I literally feel as though I am taking the whole house with me when I leave and it makes me want to not go anywhere. I literally, at times want to pull my hair out, for it is mind boggling to me, how much it takes to take this little girl out on the town! And lets face it, it is not an option in my life to just stay home and go no where. So I find that I have to more often than not, put on my big girl panties and suck it up and deal with it. Yes, it stinks and yes, I hate doing it at times, but I know that it will get easier, because lets face it,  it was my normal for 4 1/2 yrs. Therefore I know that with and through patience and time, it will become my normal again, I just don't want to have to go through the time and the patience! Tomorrow is going to be my challenge, for I have a meeting at 9 in the morning, Zachary's IEP meeting to be exact and then I have Physical therapy for Payten, which means I will have to have everyone and everything ready by 8 am, in order to get the kids to school on time and make it to the meeting and therapy on time as well. Please wish me luck, cause I am definitely going to be in need of it.

Even though, I was emotionally, mentally and physically unstable these past few days, I am grateful that I was still able to get Makenna's pre-baptism pictures done for her upcoming baptism that is this Saturday. By getting these pictures finished, it took a huge weight off my shoulders, for it is one less thing I have to stress about and it helps that they turned out so very cute! Makenna can be a hard one to photograph, for she just does not like to cooperate or smile! Crazy girl, whom I love! Here are some of my favorites that my Sister Laura took, which I am very grateful she took time out of her busy schedule to do. So, Thank you Laura! You are the best and we love you! Now here are some of the pics that I love,

 

Seriously, this little girl is the cutest thing and I love her so much and I am excited for her baptism on Saturday, but as excited as I am, I am also going to be relieved when it is finally over, for it will be another thing that will be removed my heavy plate!

Though my weekend was not the best, today, happened to be a great day. I feel like I am finally picking up the pieces, like I said earlier and rebuilding a stronger, yet normal self again. I felt like I was able to handle life today. I was able to get the house clean and kids ready, before the therapist got to my house, all without stressing and not only that, but I was able to get dinner on the table by five, etc. It seems as though life is getting back to normal and that I am getting back into the swing of things. Now, with this being said, I need to say, that I could not have done it without the help from others. First of all I need to say thank you to my Dad for helping me, by taking the kids to school this morning and by being here to watch Emmett and Payten, while I picked them up from school. Second, I need to thank my sweet neighbor, who saw my post on facebook, that Zachary forgot his lunch and took it upon herself to take it to him for me and last, but certainly not least, I need to say thank you to my sweet friend and Zachary's scout leader, Amber, for picking up a new scout shirt for Zachary, because she knew I could not do it. All these things, may seem very small and very simple, but to me, they meant the world, for they helped to lightened my load today, which helped me to get back on my feet from an emotional breakdown I had just had a few days ago. I believe these people were prompted/sent to me, to be tender mercies in my life from my Heavenly Father. I believe since he can not be here to do it himself, he sent others in his place to do it for him. Therefore I know these people were sent to me by my Heavenly Father, to help me in the small and simple ways that they helped me in today and for that I say thank you to them for being so in tune and heeding to the promptings/feelings they felt that made them act/feel inclined to help a friend out.

Though I may have a life that is filled with grief, sorrow and pain, I also I have a life that is filled with happiness, laughter and fun. I have an extremely blessed life and though I may have moments where I feel down or self pity, etc. I know that I have it good and that those good things out weigh the bad and for that I am ultimately grateful. No, Payten is not well, especially right now, but I know that whatever happens, will be for the best. She has a doctors appointment tomorrow afternoon and I am hopeful that we will receive some answers, as to know how help her to be as comfortable as possible. I know that my Heavenly Father's hand is in my life and that he is watching over me and my family, especially Payten and I am grateful for that. I am thankful that things are settling down, emotion wise for me. I hope that these meetings and parties and holidays all come and go without a hitch and that I am able to withstand it all, without any major falls/breakdowns along the way. May you too, have a good Thanksgiving and Christmas that come and go with a hitch. For now I hope and pray you all have a blessed night, filled with the rest your body needs and a good day tomorrow. Much love from our family to yours.

The trach games have finally begun!

Finally the trach games have begun! Joseph and I have been waiting since Payten had her trach reinserted, for this time to come, that time being her pulling it out. Well, today was the day! She kept pulling it out all day long and this is only the beginning to that long journey of fighting with her to keep this darn trach in. I just hope that through it all I can keep smiling, for if I don't, it is going to be a long and miserable journey.

 On another note,  Payten has Joseph and I both besides ourselves with worry. She has not herself at all lately and we can't explain exactly what it is, all we can say is, that there is something really off about her and it is completely and utterly scaring us. She is still struggling with her breathing, especially at night and she is back to sleeping a lot during the day, which should not be the case after having the trach put back in. Rather it should be the exact opposite, Payten should be sleeping comfortably and her energy level should be threw the roof and it's not. Unfortunately, this is not the only thing that has us concerned. Another concern of ours, started yesterday and that concern is, that her entire body turns tomato red, at different times throughout the day. It especially happens while sleeping, but it is not limited to sleeping and we have no idea why her body is doing this. When these episodes occur, her heart rate spikes and her O2 drops, which leaves us wondering if it is seizure related, but then it could also be her bodies way of saying she is struggling breathing. Or it could just be a neurological side effect that can no one can explain, which is what makes it so frustrating on our end, for it could be many different things, none of which are straight forward, and we do not know who we can turn to for answers other than her Neurologist. But whatever the reason is behind these episodes, that reason will not change or dismiss the fact that it is scary as hell and has left Joseph and I extremely worried. We just are wanting answers; therefore we are hoping that the Neurologist can give us one or at least a little insight as what he is thinking in regards to it.

Not only has her body been periodically turning tomato red, it has also been doing funny things temperature wise, meaning, she will feel extremely hot to the touch, as though she is burning up with fever, but then when you take her temperature, it is below normal. Now, how odd is that? And again, we are left baffled, with no real understanding as to why. All I can tell you is, I do not have a good feeling. I have a sickening, deep down feeling that Payten is on the road of no return and that soon we are going to lose this battle we have been fighting for her these past five years. I know that I have said this before, but this time the feeling is different, I can't explain it and it has myself and Joseph extremely on edge and stressed, as well as worried. Also, I am not the only one that feels this way. One of Payten's therapist today, shared with me that she has similar feelings about Payten. She said that she has been having these feelings ever since we told her Payten went into the hospital and that seeing her today solidified those feelings, for Payten is not Payten and she has regressed back to where she was two years ago and the therapist is worried that she is not going to come back from it, rather she is just going to keep regressing/declining. Now I understand that some of you may think that these feelings that the therapist shared with her, were uncalled for, but to be quite honest, I am grateful she was so open and honest with me about what she was feeling and thinking, for it helped me to realize that I am not alone in my worries and my feelings, rather I am justified in them. Therefore I need to be and should be worried for my daughter.

As much as I knew this day would come, as much as I understood that my daughter had a brain disorder that would one day take her life,  it does not make it any easier to go through or face. But for now, even though we have these strong feelings that are daughter is losing her fight, we are not going to give up, rather we are going to focus on what needs to be done to help our daughter and one of the things Joseph and I are questioning is, whether or not Payten needs the ventilator back. Joseph and I are both leaning towards feeling that she needs it back, even though we hate it and don't want it back, we both feel that part of her breathing complications might be due to her not getting the proper ventilation at night, while sleeping. So in order to figure all of this out, we are going to need to call her Pulmonolgist and set up an appointment to come in and discuss with him what we are feeling and see if he agrees. I guess for now we will just have to remain patient, attentive to our daughter needs and wait and see what happens, all while trying to keep our daughter as safe and stable as we possibly can.

Unfortunately, Payten is not the only one struggling right now. Emmett is struggling too,

I believe he might have the stomach flu or another stomach bug. The poor thing can not keep anything down. Yep, illness has struck the Merrill home, so stay away or you might just happen to get sick. I am not looking forward to having this trickle down through the entire family, but unfortunately that is what will happen and unfortunately this Mommas job is going to be the Nurse and puke cleaner upper! YUCK! (worst part of mommy-hood, cleaning puke!) Tomorrow is going to be a long day, filled with gross messes, snuggles and movies! I guess it will give me an excuse to be lazy and have a dirty house, right?! Anyways, wish me luck, for I am gonna need it. Seriously though this above picture breaks my heart, for you can see the sickness and pain in his eyes. I hate it when my kids are sick, as do most Moms. Oh well, tis the season.

On a better note, I have been able to find time to research information on the Special Education laws and I have been able to find a lot of information out that is going to help me next week when we go back in to address Makenna and whether or not she will be held back, which is going to be not! I also have found that I am blessed to have all of Payten's therapist, to whom I can talk with and who know a lot about the education laws and who have been able to help me to know what I need to know and say and have given me the research tools I need, so that Joseph and I go into this meeting completely prepared and ready. Just by them giving me these tools, I feel as though a huge weight has been lifted off my shoulders and that I now have the tools I need in order to be able to be the best advocate I can be for my daughter. Because I honestly do not believe the answer to helping her is holding her back. Rather I believe that there is something more wrong than what the school is telling us and that what would be better suited for Makenna, is to keep her moving forward, while giving her the different educational helps/supports she needs in order to help her fully succeed. I still have a lot more research to do, but hopeful that I will be able to do it, so that I am as prepared as I possibly can be, in order to put up the best fight possible.

With all of these different worries, struggles and stresses that have been thrown at Joseph and I, we still seem to be able to stand and get through our days with smiles on our faces, even though we are beyond tired. I just pray all of these storms pass soon and that we can have some peace during the holidays. For I believe we are deserving of that, don't you think?! Well, now that I shared my day with you and expressed all my thoughts and feelings, I am going to go to bed, for this Momma is beyond exhausted and needs sleep. So good night my friends and sweet dreams!  

Payten is back to having seizures and this Mom is drained because of it.

Today, I was all over the place with my emotions. Mainly I was feeling stressed and worried. Which is mostly due to Payten and her seizures. Fortunately, Payten seemed to be better today. She was filled with more energy and did not appear as pale or lethargic upon waking up this morning. However, she did have a seizure this morning. Her seizures are progressing into different types of seizures, meaning they are going from petite to more Grand Mal. Right now, the main type of seizure she has been having, displays with her right side stiffening, head and eyes locked to the right and her right shoulder, arm and leg, twitch. Thankfully her seizures still are short in length, meaning they only last a few seconds, maybe a minute at the most. But even though they are short in length, it still does not prevent the side effects, which are tiredness and sleeping afterwards, as well as muscle weakness. It angers me so much right now, for I believed we had finally gotten things under control and now I feel we are back to square one with these darn seizures.

It is beyond frustrating, as well as emotionally draining. I am at a loss as to how to help her. It is so hard, for the Neurologist told us, that all of these set backs, meaning her respiratory status, sleep apnea, reinsertion of the trach and increased seizures, are all signs of her diagnosis progressing and her brain atrophy worsening. I know that we were told all of this at the beginning, when we received Payten's diagnosis, and it is one thing to understand and know that it will happen, but it is another thing to watch it happen. I know when we were in the hospital, after the Neurologist shared with us their feelings about all of Payten's complications being Neurological and due to her diagnosis; we asked if they were planning on doing another MRI, in order to make absolute sure that this was really the cause of all of these issues. Basically the Neurologists response was, there is no need for an MRI to be done to know that this is Payten's diagnosis progressing, all the MRI would do for us, is show us how drastic the progression and atrophy is. Which a part of me really wants to know how drastic it is, but the Mother side of me does not want to know, for all that will do, is only solidify how much closer we are to death and as much as I want to know how much time we have left, I don't want to know, if that makes any sense. I can't fully explain it, all I can say is that it is hard and these seizures make it that much harder. They are seriously taking their toll on me and I hope we can control them soon, for I am done and I know Payten is too, bless her heart!

Payten passed out directly after her seizure and she did not wake up, until we arrived at Physical Therapy, so you can imagine how that session went. Correct, not good! Throughout the entire session, Payten would,

 

Sit up nice and straight, then she would,

 

FALL!

 

This pattern went on, back and forth the whole entire time. Payten could not hold the position like she normally can, all because of her lack of muscle control/weakness, which is all due to her seizures. Not only was she having trouble sitting, but it was the choice of sitting that Payten was making, that became one of the major problems we were having at PT today. Payten kept choosing to sacrum sit, meaning she was using no core muscles at all to sit. Here are a few photos I captured of Payten sacrum sitting,

 

Before I go further, I just want to clarify, these different pictures of Payten sacrum sitting are not PT approved, even though you see her therapist in the pictures, smiling. The moments in which the therapist was captured, were moments when she was allowing Payten a break and showing Payten some love and compassion, before forcing Payten to go back into a sitting position that Payten had so desperately fought to get out of. I just wanted to clarify that so none of you thought it was something that was condoned by her therapist. These pictures show, just how bad Payten was struggling sitting. Even Payten's PT kept saying that this was not Payten and how bad she felt that the seizures were having such a devastating, declining impact on Payten. So I am not the only one that sees it, which worries and stresses me out even more, for I sometimes wish I was crazy and that this was all a dream, that I would wake up from it and find my sweet Payter Tater happily at work and fighting strong.

As hard as it was for me to see Payten have a seizure this morning and then struggle because of that seizure, there were still highlights to my day, one being Emmett and the things he did while we were at PT.  How thankful I am that I was allotted these moments with Emmett, for they truly helped to ease the pressure and stress that was weighing heavily on my mind during PT. Here are some pictures that I was able to capture,

 

Emmett found the bubbles and he finally got the hang of it

and was able to blow some bubbles on his own!

The pictures below are more of

Emmett working hard at blowing bubbles!!!

 

 

Look at him blow!

 

 

Finally, he was able to blow more than one!

He was so proud of himself, he would not stop

blowing them!

 

And this last picture below,

 

 

is of Emmett pretending he was lion and giving me his best lion impression!

Seriously, this kid is the cutest and I love him to pieces!

He makes my heart happy!

 

Another highlight to my day was when my other kiddos brought home their school pictures! Finally I have updated pictures to hang on my wall and they are cute one's to boot! Which makes it that much more sweet! Here are their school pictures,

 

 Zachary age 10

 

Makenna age 7

 

Aren't these two pictures the sweetest and these two kids the cutest?! Well, even if you don't think it, I do and that is all that matters! Unfortunately, the highlights did not last and we had a few bumps later in our day. One of these bumps being Makenna and the parent teacher conference we had today. Seriously, I am so sick and tired of people/therapist/teachers, telling me what is wrong with my children! For once I would like to have a therapist or teacher call me in for a meeting to give me good news, but no, that never happens, at least it doesn't for me and I am beyond sick of it! 

 

Let me explain, Makenna's teachers feel that it would be extremely beneficial for Makenna to be held back a grade, due to social and emotional maturity. They feel that she is behind her peers in these areas and feel that by holding her back, it will help improve these areas she struggles with. When Joseph and I asked if any of there reasoning for holding her back was due to academics, they said, No. There exact response was, she is at grade level and above grade level when it comes to academics, however she is just not socially ready to move forward. Now, I am going to use a quote my son Zachary said tonight, "What does socially being ready, have to do with academically being ready?" And all I have to say is, Amen, Zachary, Amen!

 

Joseph and mines feelings are this, Makenna is only seven, she has time to mature and grow, therefore we feel that it is too soon to determine whether she is emotionally/socially behind and we also believe that this might just be who our daughter is, shy and reserved and by holding her back, it will only shove her further into her shell and not out of her shell. We tried to explain the stressful home life we have and that we feel it could be contributing to her issues at school and they agreed that the stresses of home could be contributing, which we then followed with the question of, How will holding her back change that? Their answer was, it wouldn't. Now, please do not get me wrong here, I am all for holding a child back if it is absolutely necessary, because of academics, etc. but I know my daughter and I do not believe holding her back a grade will solve the problem they think it will. Therefore Joseph and I stood our ground and basically we left the meeting with the topic at hand unresolved, with another meeting scheduled for next week, in hopes that they can further try to bully us into their way of thinking in regards to holding our daughter back. I am starting to feel like it might be time to find a new school or start homeschooling, for I am tired of these teachers and schools applying this one education fits all act, for I believe every child is different, therefore every child needs different things and different methods of teaching. Why is that so hard to understand?!

 

All of this new stress, on top of Payten's complications, sent me into a complete shut down mode, for my mind and body could not take it any longer. Then when I felt as though I could not take much more of this insanity, I opened the box from Apria health care, which is the supplier for Payten's medical supplies and find that they shipped the wrong stuff. Really?! Really?! Here is a picture,

 

I know what you are thinking, it is a trach, so then what is the problem? Well, let me tell you what the problem is, this is not a pediatric trach, rather this an adult trach, which means it is much bigger in diameter and length. Now, here is a picture of a pediatric trach,

Can you see the difference?! I hope so, for the difference is Huge. Now you can sort of understand why I said our discharge from the hospital was the discharge from HELL, for this is the type of incompetence I was dealing with! And that is not the most frustrating part about it, the most frustrating part is the fact that both places have been dealing with our daughter for five years now and they make a mistake such as this. Rally?! They don't know our daughter is not an adult! And not only that, this mistake with trach now leaves us without a spare trach, which is very risky and dangerous. So for them to make such a mistake, is very unprofessional and extremely frustrating on our end, for it causes us bigger headaches, that we have to fix. So now you know what I will be doing tomorrow, making phone calls to try and get the right supplies shipped out to us.

Then our night ended with Payten having more seizures, which left Joseph and I utterly drained, both emotionally and physically, which is not how we wanted to end our day. I seriously wonder when all this madness will end, because all I want is to have something go my way! I just want to feel like I have control over something and I don't, no one does and that frustrates me! As much as I love my life, I did not love today and I am very thankful it is over. I hope that tomorrow brings a better day and that we can find relief for Payten, a solution for Makenna and the right trach supplies for Payten! Thank heavens there is always a new day ahead of us, for I certainly need a new start tomorrow! Thank you dear friends for all your love, prayers and support. May God continue to bless your lives and may you all have a good night!