May we all find something to SMILE about!

I had to share this picture of Payten. This is by far one of the best pictures I have captured of her, for it shows her true personality, beauty and smile. I love it! What makes it even better in my opinion is, when I took this, Payten had a temperature of 101.5 and bright green secretions, basically indicating that she is not well, but look at that smile you would never guess that she was not feeling well. This is why she is such an inspiration to me. Even though she faces crappy life happen stances she always smiles through it. Even on the worst of days, she will show that smile, it may not stay long and it might be followed by tears, but she still shows it! And that is truly inspiring! I have a lot to learn from this young lady. If I can become half the person she is, I will have done something right, for she is the epitome of beauty, grace, and love. All qualities I want to master. So I am thankful that I have one of the best examples in my life of these qualities and that I can call her my daughter! What a blessing she is to all.

Now this is a picture of Payten two weeks ago, when she was hospitalized for uncontrolled seizure activity. Even during this hospitalization with all she was faced with that above smile would shine through, it may have been short lived, but it shined through. My fear is that the day will come that this smile will not shine through and that is when I will know, that she is done fighting and she is ready to leave for home and that will be one of the saddest days of my life and so I am grateful I was able to capture her beautiful smile, for when that day comes, I will have something to cherish forever!

I want to end with a quote that I believe this top picture of Payten smiling, sums it up beautifully. It says,
      
       When life gives you a hundred reasons to cry, show life that you have a thousand reasons to
       smile!  ~ Unknown

This is exactly what Payten is doing in that picture! She is showing the world that even though I have a tough life and even though I am sick right now and I will struggle with different illnesses and challenges through my life, I will ALWAYS smile, for I always have something to smile about and when I don't, that is when my journey here on earth will be through! May we all learn from Payten and smile, even on the crappiest day may we smile our way through. Because happy people are the prettiest! God bless you all and  may you all find something to smile about!

Progress report on Payten and Pictures of our staycation!

Apologies to you all, for my last post had no update on Payten. Like I said before, not only will this blog be updates regarding Payten, it will be my feelings, heartache, laughter and family memories, but I do have an update so I want to apologize for forgetting to put it in my last post. For those of you who follow me on Facebook, you already know Payten was just recently in the hospital, but for those of you who did not know, Payten was hospitalized last Saturday. The reason being was uncontrolled seizures. Like in my last post, Payten had been having seizures daily, sometimes two or three times a day for two weeks prior to this hospitalization. Her doctor was well aware of the seizure activity and we kept going up on her Keppra (seizure medication), but obviously that was not working very well considering she kept having them. The reason we took her to the hospital, was not because of seizures, it was because she peed dark brown urine and it scared us. We thought it was her kidneys or liver, so we rushed her to the ER to be safe. When we got to the ER she quit peeing dark brown, typical right?! I know! But they still did blood work and a urine analysis to try and figure what might of caused her urine to be that color. Those tests came back normal, so we have no answers as to why she had that dark brown urine. While in the ER, Payten started having seizure, after seizure and so they wanted to keep for at least one night to monitor her and get her seizures under control. She was there til Monday. Not too bad, but still longer than they thought! She was on an IV drip of Keppra the first night and was still having seizures. The next day her seizure activity slowed some, but she still had a few, so they upped her Keppra even more and kept her another night to see how she did and to get an EEG done. She did great, her seizures were controlled and her EEG was normal, Yay! Considering we upped her Keppra to 9 mls., 1800 mg. ( In case you are wondering, that is a lot for a 14.6 kg 4 yr. old girl (well almost 4!)).

Since we have been home, Payten has been doing great! She is back to her baseline health and she is her happy little self again! We love it when she is happy and well, for we have so much fun with her. Today we saw her Pulmonologist, Dr. Panesar and Payten is sick. (Boo!) She will have to receive more breathing treatments throughout the daytime and she will be placed on Perdisolone and Bactrum to try and help clear the illness. Let's hope she gets over this without having to be put in the hospital. It seems like it is getting harder and harder to try and clear simple illnesses anymore for her. I feel like the only thing that works for Payten are IV antibiotics and we have to start those in the hospital, then we can come home sometimes on them if she is stable enough and finish them at home, but it is still a pain in the butt and we do not like to have to go to that extreme, but sometimes that is the only option we have for her. Please pray that, that will not be the case this time and that these meds will clear this illness.

Other than being sick, Payten is progressing well in her therapies. She is sitting independently. She is starting to be able to get up into the sitting position on her own, no she has not fully mastered it yet, but she will soon! She is enjoying playing with toys more and she is more aware of her surroundings and the people around her. She is doing well in her gait trainer, she is starting to take more steps, which is huge and she does not cry when we put her in it! Yay for that! Hopefully we can get her walking in it soon and then we can move on to a walker, who knows, one can hope! She enjoys music and Mommy singing to her. She loves people talking to her and reading her stories. We have found that she is starting to communicate with us by batting her ear. She bats two times for more, she bats one time for yes, and three times for no. It is amazing to see this. For so long I did think we would ever be able to communicate with her, but hopefully we will get to the point of her being able to use a communication device. It would be nice to understand what is going through that little head of hers! She is growing to be so tall. We are actually looking into getting her an actual wheel chair in the near future. I think it will be a good change, people will start to see Payten as the big girl she is, instead of as a baby.

As for her brain, we had a CT Scan done this last hospitalization and it showed that the area that had, had some bleeding on the brain, had cleared up, which is fabulous. But it did show worsening of the deterioration, so we will see, who knows? All I can say is she is progressing and so it doesn't matter what the Scan shows. I have put my trust in my Lord and I pray day and night that his will be done and that if and when it be her time or that it becomes to much for her to handle, he take her home. So when I ask all of you to pray for my sweet Payten, please do not pray to her to get better or to heal per say, rather pray that thy Father's will be done, for we do not want to prolong any suffering, we only want Payten here if it is what the Lord deems necessary for her. We have an eternal perspective and we know that this is not the end, rather it is just the beginning and so to us that is not a heartless pray, rather it is a selfless pray, for we only want what is best for our daughter. And we believe the Lord knows what is best for her, so therefore if we always pray for his will, rather than our own will, we will being doing what is best for Payten. I think this progress report on Payten really shows that all our prayers have been answered and she is progressing despite the odds and the pictures of the brain. I believe that is because of faith and trusting in the Lord. So thank you all for your devout prayers in Payten's behalf, they have not been in vain.

Now, onto something else! My goals I set yesterday in my last post, I failed miserably today at accomplishing the daily ones set. But it is kind of not my fault, the night nurse that comes on Monday did not show up until 10pm, when she is suppose to be here at 8:30pm. Reason being she did not know Payten was out of the hospital, so I didn't get into be until 11pm and therefore did not get up until 6:45am. Oh well, there is always tomorrow! We will see if I can do these goals, pray for me that I can, I am going to sincerely try my hardest to do them. Also below are pictures from the kids and mines day of fun/our staycation! Enjoy, we certainly did! Thanks again for caring enough about Payten to follow her progress and to keep her in your prayers. We do sincerely appreciate it.

This is the indoor picnic we had, while watching the three movies the kids selected! Mac Donald's was their lunch of choice. YUM! Not really, but they certainly think it is and I wasn't going to argue considering it was their day of fun!

Here is the hallway obstacle course the kids and I made! They had a blast going through it! The rules were, no using your hands, and no touching the "lasers" as we called them! But obviously as you can see, Makenna didn't follow the rules very well, for she used her hands to crawl through the maze! They had a blast and we had many laughs!

Sorry if I scared anyone!!! Hahaha! Here is the picture of me after the kids Painted my face like a clown! I know, I know, scary, but they had fun and that is all that matters! I had to leave it on until they gave me permission to take it off! It was way too long, but I obeyed! I think this will be a day my kids will always remember and that is why I added this to the goals I want to keep, random staycation days! This way when my kids are older they will have awesome memories of their childhood and maybe forget all the stress we have had to endure while caring for our beautiful Payter Tater!

This last picture was not taken on our staycation day, but it was taken the Friday after and I had to share it for I think it is so cute! Emmett has learned to climb and he climbs anything and everything! He keeps us on our toes, he gives Payten a run for her money! I seriously believe they compete with one another for Mom and Dad's attention! Oh well, good thing they are so cute or I don't know what I would do with them!!!!! Hope you enjoyed reading this and come back to follow Payten. I will definitely try to be better at updating this blog! Love you all!

Life!

I wanted to take the time to blog for I have been really struggling emotionally lately, I think it has to do with a one year old and lack of sleep, who knows?!?! Anyways, I wanted to give you all a little glimpse into the life of The Merrill Family, I feel that most of my friends and family do not see what our life is really like. Our weekly schedule consists of Monday, Speech Therapy, Tuesday, Occupational Therapy, Thursday, Physical Therapy & Preschool, Friday, Physical Therapy, Occupational Therapy, & Feeding Therapy, and these are not all! These are just the set appointments each week. This list does not include the different meetings with the different agencies that deal with Payten, doctors appointments that we have monthly, in home Nursing that comes weekly, and the other everyday activities of having three other children, such as, Parent Teacher Conference, Dance Class, Music Lessons, Doctors appointments, etc.. Our life is extremely demanding, I have someone in my home daily, if not two to three times a day. This is why I am so nutty about my house being clean, who wants a dirty house when people are coming over? Since my home is a zoo of people coming and going I constantly feel like the cleaning lady.

So my daily schedule consists of waking up, getting Zach and Makenna dressed, hair done, breakfast made, lunches packed, Emmett dressed and fed, Payten dressed, fed and medications administered, all before we have to be out the door by 8:15am! Now lets be real, does this happen, only in a prefect world it does! If I am doing good it happens, but most of the time I get Zach and Makenna dressed, hair done, breakfast made, lunches packed, grab Emmett out of his crib, get Payten up and dressed, pack all her supplies (suction machine, suction catheters, pulse oximeter, etc.) and run out the door, praying I didn't forget anything, then I come home feed Emmett and dress him, give Payten her medications, do CPT and breathing treatments and feed her, while running around like a chicken with my head cut off, cleaning like a mad woman before therapies start! I am lucky if I get a shower, but most days I am the smelly Mom no one likes!!!! I am suprised the therapist keep coming back! Really I am! Hahaha!

 During, before, or after therapy I have to deal with Emmett, whether it be chasing him, feeding him, picking up after him, or trying to get his naps in, it is crazy all the same. I also have to suction Payten, do spot checks on her O2 levels, put trach's back in that she has pulled out (which is on a daily basis in our house, sometimes 2 or 3 times a day!), etc. Also I have to feed her 3 more times during the day, so I try to do her feeds at 8:30am, 12:30pm, 4:30pm, 7:30pm. But they all have to be centered around the different appointments throughout the day, so I have learned that I have to be extremely flexible and schedules go out the window most of the time. She also receives afternoon medications, that is if I don't forget to administer them, which again lets be real, it happens! All of this occurs hopefully before I go get Zach and Makenna from school at 3pm! Then it is afternoon snacks, homework, chores and dinner planning. People wonder why I eat out alot, if you had this schedule you would probably too! Our budget though is not allowing much eating out anymore, so I am having to be more organized and get dinner made! Then we have to get ready for bed, because my husband needs to try to be in bed by 7:30/8, because he wakes up at 1:45am to get to work by 2:50am!

Inorder to do so, we have to clean up our afternoon and dinner mess, get baths done, homework finished, Payten's CPT and breathing treatments, night medications, teeth brushed, stories read, equipment set up (ventilator, pulse oximeter, suction machine, feeding pump.) All this before 8pm! And people wonder why my husband doesn't get sleep. Maybe now you can understand a little better as to why! And this list does not include the nightly ups and downs we have, whether it be suctioning Payten, putting her vent back on, hooking O2 up, or Emmett needing us and it does not include the
different POP-UPS that everyday life might bring such as, family or friends needing help, church/school activities, extra curricular activities, urgent care visits, poop blow outs, ect. So when you see me and you think, wow she looks burnt out, you are probably right, I am! And that is exactly where I am right now, burnt out!

I am not posting this to get on my little box of Tide and say look at me!, look at me!, don't you feel so sorry?! Rather I just want people to see what I and other mothers of children with special needs go through. We not only have the everyday tasks that all mothers have, we have extra things as well and it gets over whelming at times. A couple weeks ago, Payten was having seizures all the time and Emmett was not sleeping at night and so here I was, a mommy to four kids, whom had no sleep and was stressed and worried about one who kept having seizures! I reached a melting point and I was ready to say, I quit! I quit everything! I quit Cub scouts, I quit visiting teaching, I quit therapies, I quit helping with homework, I quit driving kids to and from school, I quit cooking and cleaning, I quit having meetings regarding Payten, I quit all the doctors appointments, etc, I just quit life! And I was quite serious. I was going to call everyone, then I took a few breathes, went for a drive, got myself some lunch and was better! The worries weren't over, the stress wasn't gone, my burdens were not lifted, but somehow I was able to reach deep down and grab the little ounce of courage, strength and determination I had left inside me and use it!

It was not easy to do, but I had to sit back and evaluate my life. I had to figure out why I felt so burned out. I decided I needed to spend more time doing fun things! I needed to slow down and enjoy life, not just endure it! I needed to play with my kiddos more, whether that be barbies, house, legos, video games, basketball, etc. I needed to do it more. I needed to go to bed earlier and get up earlier. I needed to start exercising and eating better. I needed to spend less time on the computer and more time doing things with my kids and husband. I needed to pray more and study the scriptures. Attend the temple on a regular basis. I needed to not go to all the parties, girls nights, etc. rather I just needed to be here, at home with my family enjoying them. Every once in a while doing these things for myself, like going to parties and girls nights will be fine. Just not every week or everytime I am invited!

I thought to myself, I how am I going to do this? How am I going to improve my life and use my time better? The first thing I thought was, I am going to not turn the TV on during the day! I am going to wake up at 5:30 everyday and go to bed early with my husband. I will exercise in the morning and then study my scriptures. I will do more crock pot meals. Be more creative with the things I do with my kids! Make one on one time with them, such as taking them on Mommy me dates. Have movie/game night once a week on Friday or Saturday! Give my kids more responsiblities/chores! And I will stop worrying how perfect my life looks, such as my house, etc and what other people think and worry solely about me and my family. The last thing will be hard, but I will definately try and be better at it.

Last Wednesday I did something out of the ordinary, I broke all the rules! We had a some really stressful days prior to Wednesday and we were all on edge because of it, so I decided to turn off the alarms and let the kids miss school. We had what I am going to call a staycation! We stayed home and took a break from life. I canceled all of my appointments for the day and I took the kids to the store and let them pick out movies, games and treats. We came home and had an indoor picnic while watching the three movies we rented, Where the red fern grows, Flicka 3, and The three stooges.
After a movie marathon, we made an obstacle course in the hallway and sugar cookies. Then the kids colored, painted my face like a clown and we ended our day of fun with a Nerf gun war. It was a blast, a day the kids and I will never forget! It was a break that the kids and I had needed for a long time and I was glad I took the opportunity to do this. So this will be another thing that I will add to making my life a little better, random staycation days!

I am grateful that even though I reached a point in my life where I wanted to run away and hide. A point of throwing my hands in the air and quitting everything, that I didn't, rather I was able to reached deep down inside and find the strength to keep going. I was able to sit back and reevaluate my life and find what would make it better. I am thankful to be able to set new goals and hope that they help me in becoming a better mother to my kids and wife to my husband. I hope that by doing all these things on my list, I can keep myself from reaching this breaking point again and make this thing called life a little more enjoyable and fun! May we all beable to enjoy life rather than just endure it!