Too Cute – Must Share (A Note From Mama)

Payton is icky sicky at the moment. She came down with my stomach flu, as well as her sister’s cold. Whew!

I have to say, though, this child is an incredible little trooper. Even with her ever growing awareness, and the conscious realization that she is really, really sick, she still has more smiles than tears. She is truly a little angel.

Tonight, however, we had a super cute, funny moment, that I absolutely have to share. I got her all changed, rubbed down to help with her muscle aches, and got a fresh, cool washrag for her little aching head. I kissed her, and let her know that I had to leave the room for a minute, as Mommy had to go “potty”. (Sorry for the overshare here. LOL). I figured she would get teary-eyed, as she hates when I leave her for any reason when she’s this sick. Instead, she gave me a little smile. I told her, “I don’t have anybody to change my diaper for me, so I have to go potty myself”, and she busted out into the cutest little belly giggle I’ve heard from her yet!

She is really comprehending the silly stuff in life now! I am loving every single minute of this new phase in Payton’s journey! :)

Ok, back to snuggling and loving on my sicky little cuddlefish. Night all! xoxoxox

Tons of New Changes (A Note From Mama)

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Payton has been doing so many new things over the past couple of weeks, that I’m not even really sure where to start. I’m liable to get a little emotional with this post, as the new developments I’ll be reporting are nothing short of a big deal, so bear with me.

Payton is getting more and more consistent with choices. If I give her options, such as a choice between 2 movies or toys, or an outfit, she will study the objects in question, and then make whatever choice she wants at that moment. She usually ends up so pleased with herself, that she’ll giggle at me, and clap her hands. She is also helping herself get changed and dressed, putting her arms in the appropriate sleeves, and same with her legs and her pants. She drools still, and is becoming uncomfortable when her shirts become too damp for her – I am usually very anal about making sure she’s dry, but there have been times lately where she’ll let me know when she’s ready to be changed – she’ll pat her shirt, and whimper. Same with her diaper – as she is not potty trained yet, and is still in diapers, I have been teaching her to let me know when she feels she needs to be changed; I have taught her to pat her diaper over and over when she needs a fresh one.

Guess what? Over the past couple of weeks, she has been doing that consistently, as well. :)

Payton is also learning to feed herself. For awhile, she liked experimenting with the use of both her hands when it came to feeding herself; now I am noticing a  right-hand dominance, which is a very good thing. She is learning which side of her body is most dominant, something she didn’t recognize before, and is now using it on a regular basis.

She is beginning to gain more motor coordination with her hands, something she’s struggled with nearly since birth. When she gets excited, she reacts very explosively and spastically, with the end result that someone usually ended up hurt – most times, it was me. She loves to touch people’s faces and hair, but without the coordination needed, she tended to be too aggressive in her affections. My husband and I have been working with her for a long time on the concept of being gentle, and over the past few weeks, that is paying off hugely. She is very careful and gentle when touching our faces now, and loves to take our hair (especially mine, as it’s very long), and run it through her fingers. She is no longer pulling or yanking – the movements are much slower and deliberate, and she smiles as she does it. It’s really registering with her that she’s learning, and she is feeling pride in her development, which is just incredible.

Her affections, too, are really something else as of late. Payton has always been a sweetheart, but recently, it’s multiplied tenfold. She has been very huggy and snuggly, and is giving out smooches by the buckets. I have been ill all week with a stomach flu, and Payton, being the perceptive little darling that she is, has been hugging and kissing me constantly – she is consciously recognizing I don’t feel well, and with the beauty and innocence of any child, is trying to make Mommy feel better. It’s been a lovely, heartwarming experience.

My absolute favorite thing she’s doing lately, though? She is recognizing when something silly happens – whether it’s a funny part in a movie, or when someone in the family does something goofy and random, or when she hears funny things in a book that make no sense. She’s also beginning to do goofy little things herself, just to make people laugh. Just this morning, she took one of her toys, and kept pressing a certain button over and over, cutting it off partway, and the sound was so silly and jerky, it made her giggle. So I started doing a goofy little dance, in rhythm with the sound, and she busted out in the cutest giggle I’ve ever heard. Then, she kept pushing the button over and over, and looking at me, waiting to see if I would keep dancing. I did, and she thought it was the funniest thing ever!

My angel is growing and changing, and doing things we were told she may never do. Payton truly is, and continues to be, my little miracle, and I am so grateful to have her in my life.

I’m Communicating

I have been “talking” more lately. I have been making new sounds, and my favorite word is love. I say it a lot.

I have been showing and telling Mommy what I want, too. If I’m hungry, I tell Mommy “yum yum”, and when Mommy feeds me, I hand sign more when I want more food, or I point to what I want. Mommy is also teaching me how to feed myself. That’s one of my new favorite things.

Mommy gives me choices by showing me a couple of things at a time, and lets me make my choices myself. It’s really great!

Today I showed Mommy I wanted more water. I saw Mommy drinking from her water bottle, and my cup was empty. I was thirsty, too, so I picked my cup up and tried to hand it to Mommy. She understood, and filled my cup up right away. She was so happy.

I am happy, too. I like being able to tell Mommy and Daddy what I want, and know they understand me.

 

Payton’s Awareness (A Note From Mama)

Payton has been going through a whole host of changes lately, and sometimes it’s overwhelming. There are moments when even her Daddy and I are astounded by just how much she understands and processes things, even though we’ve known all along that Payton is incredibly intelligent.

I realized recently that Payton is developing a sense of time. Not exactly time as we see it, but time nonetheless.

Here’s an example: if I have to leave the room for any reason, and I tell Payton I’ll be back in just a minute – here’s the catch. If I’m not back in “just a minute”, as soon as I do come back, she’ll let me have it. Occasionally she gets aggressive with me, but most of the time she’ll either yell at me, or have a small meltdown. I’ve learned now that if I have to be away for longer than a minute or two, I say something like “Mommy will be back shortly” or “Mommy will be back in a few minutes”, and then I keep my word. So far, it’s helped keep the tantrums to a minimum.

This is an absolutely huge development in her awareness.

Another one is after she goes to bed. She likes me to check on her numerous times before she falls asleep – same thing, if I tell her I’ll be back shortly to check on her, and I don’t (which is rare, but with a house full of other kids, too, it does occasionally happen), she refuses to go to sleep until I make good on my word. And sometimes, she’ll cry, which tugs on my heartstrings like nothing else can.

She also recognizes when we tell her something is going to happen, and then for whatever reason, doesn’t. If I tell her we’re going to go bye-bye, and it falls through and we don’t, she’ll cry. And I don’t just mean cry. I mean, the hugest alligator tears you’ve ever seen, and the absolute saddest faces on the planet. If I tell her we’re going to paint or color, or some other activity that she loves, and it ends up not working out, or if we can’t get to it immediately, same result – tears and sadness. I have learned to let her know what’s happening right before it’s to take place, that way it’s an immediate correlation between “we’re going to do this” and “we are doing this”. She is much happier that way, and so is Mommy – the worst thing for me is disappointing her. She is so sweet, and innocent, that any sadness in her heart brings me to tears myself.

Payton has helped me to grow and learn more than I ever thought was possible. Every day, she challenges and teaches me how to be the best mother and woman that I can be, and the unconditional love that she shows me day in and day out, even on my worst days, baffles me and warms my heart. I look forward to every day on this journey with her, and watching her accomplish each and every milestone. I am truly blessed to have such a wonderful little angel in my life.

My Thanksgiving

My Thanksgiving this year was great! I got to spend the whole day with my family. I ate tacos and homemade carrot cake and pumpkin pie with a little whipped cream. It was very yummy.

My wheelchair came right before Thanksgiving. After dinner, Mommy and Daddy took me out for a walk in it. It was really great! I sit up high, and I can see everything in it! I really like laying my head back, so I can look at the sky and the trees.

 

 

After the walk and food, I was very tired, and had a little meltdown. Sometimes I do that when I feel overwhelmed, even if I’m really happy. My Mommy cuddled in my bed with me until I felt better, then we watched an animated movie before I went nighty night. It was a really great day! :)

I’m Changing Again

I have been doing lots of new things this week.

This morning, I told my Mommy that I loved her. Her smile was so big, and she cried a little.

A couple of days ago, I sat in the chair in the living room just like a big girl. I crossed one leg over the other, and put my hands together in my lap. I wanted to sit just like Mommy. Mommy and Grandma were so proud of me.

I’m working on my hand signs, too. I can sign “more”, and “hi”. And I’ve been trying to say “yoga”. Mommy loves that. And I love when Mommy does yoga with me. It’s part of my therapy.

And earlier this week, I started figuring out one of my toys. It’s a big gum ball machine. You put the gumballs in the opening at the top, then pull the lever, and the ball comes out, and music plays. I have almost figured out how to put the gumballs in all by myself. It’s hard sometimes for my hands to hold things. I know how to pull the lever now, though, and make the gumballs come out. I love this toy lots.

Mommy says my new walker will be here tomorrow. I get to learn how to walk! Hooray!! :)

It’s Bye-Bye Day!

My Mommy says we’re going bye-bye today. That’s one of my favorite things. Mommy got me a new big-girl carseat a couple of days ago, too, so now I can go bye-bye all the time. I don’t like being home every day. I want to see the world!

Sometimes, though, going bye-bye a lot is hard. All the colors and sights, the loud noises, and all the energies around me….it’s too much for me to handle sometimes, and then I have meltdowns. It makes Mommy sad when I have those, because she feels like she’s upset me, or scared me. Sometimes that does happen when we go out, especially if there’s a lot going on around me, and the noises get too loud. But I know Mommy just wants what’s best for me, and wants me to see the world. I am grateful for that.

I have to go and take a nap. Maybe if I do, I won’t have a hard time today when we go bye-bye. I don’t want to have a meltdown, and make my Mommy sad.

Yay! I get to go see the world today! I am very excited!

A Note From Payton’s Mama

Hello, I am Heather, Payton’s Mommy, and I am the one writing, and publishing, this blog. What I’m trying to do with this blog is not only share our families’ story and Payton’s with the world, but I want to try and convey how Payton sees things. You see, I am very blessed to have a special, almost “mind-reading” type connection with Payton; I am truly grateful for that, as she is non-verbal, and being able to anticipate what she needs when she needs it helps a great deal in ensuring that she is happy.

Don’t get me wrong – like any other child, we have bad days, too. Sometimes she gets frustrated because she can’t communicate very well, and she will have meltdowns. Those days are hard, as it makes my heart hurt seeing her upset, or in pain of any sort. She is very intelligent, and understands everything that goes on around her, and what is said to her. Just recently (on Halloween, of all nights), I watched her observing all the children running around the neighborhood, laughing and yelling, and she turned and looked at me with this look….of confusion, and hurt, and frustration – I realized in that moment, that she was silently asking me “Mama, why can’t I do that, too”?

I felt my heart shatter into a million pieces in that moment, and it was all I could do to hold the tears back. You see, Payton is very sensitive to energy, and the slightest tension or negativity, and she becomes very upset, sometimes even angry. So instead of letting her feel the pain in my heart, I simply held her, and stroked her hair, and kissed her all over her face until she relaxed again. And our Halloween ended beautifully.

I’m going to stop here for a moment, and give you a little background history on Payton.

My pregnancy progressed like my first pregnancy did, and yet….it was different. I remember feeling anxious all the time, and thinking that something wasn’t right, and I constantly asked my husband “do you think something’s wrong with the baby”? He would assure me that everything was fine, and still my worry persisted. I was chronically fatigued throughout the whole duration of my pregnancy, with no reprieve. And Payton’s movements….they would be so sudden and repetitive; so jerky, and spastic, that I would literally become sick to my stomach. There were no gentle rolls, or little kicks here and there, or moving to a different place in utero. She would almost always chill in the same place, and her movements were always explosive and sudden, and would last for longer than I could keep track of. She was born in July of 2008, 10 days early, and her birth story alone was a nightmare. When she was finally ready, she came into this world so fast, that the doctor was barely able to catch her in time. As it was, he only just caught her by the ankle, and actually swung her under the table. Yes, I’m serious. When she was born, she was absolutely silent; no crying, nothing, save for a tiny squeak. She was immediately rushed into the nursery and away from me, as she was covered in meconium (the first stool, which is generally not passed in utero), and they were concerned that she had ingested some into her lungs, which could cause health and developmental problems. Less than 12 hours later, she was so severely jaundiced, that she was immediately placed under the phototherapy lamps. The doctors ran tests, and were completely mystified – they could find no identifiable cause as to the origin and severity of the jaundice. Her pediatrician at the time, pulled my husband aside in the hospital, and warned him that there could be developmental issues down the road with Payton, due to the jaundice.

 

 

The first few months of her life were difficult, to say the least. Payton was insanely colicy – she would scream and scream for hours, sometimes days, on end, leaving me with little sleep, and an even shorter temper. It was frustrating not being able to soothe her when she was fussy, and even harder with the lack of sleep. I wondered sometimes, felt it in my heart, actually, that something was different with her – it wasn’t just regular colic. It went on for months and months, and seemed to progressively get worse….

Then one day, it was like someone flipped a switch, and she just got….quiet. Really, really quiet. She wouldn’t cry, she wouldn’t coo….nothing. It was one of the strangest, scariest moments in my life. We realized then, too, that she was not developing her motor skills very well – hardly at all, actually. At her nine month check-up, we expressed our concerns about her development with her pediatrician, and he mentioned the possibility of physical therapy. When we asked him about the jaundice at birth, and the possibility of complications from that, he flat out told us that her case wasn’t severe enough to cause developmental problems, even though he had specifically mentioned that distinct possibility in the hospital at her birth.

Yes, I am serious again. We still are not sure what happened here – if the doctor didn’t report the circumstances in her charts right, or what. Whatever happened, there is no public record of it, even though my husband and I can attest to the severity of the circumstances, and what we were told by doctors and hospital staff at that time. However, it’s one of those cases of our word against that of the medical personnel…..and we all know how that goes.

 

 

By time Payton was a year, we placed her in the Birth-3 physical therapy program through the state of Washington. She had physical and speech therapy once a week, every week, and we began working with her more at home, as well. We had just begun genetic testing, and had received a loose diagnosis of Cerebral Palsy. She was also diagnosed with mild microcephaly – small, slowly developing head; in other words, the growth and development of her brain was slower than normal. She also fit into the Autism spectrum, and had Sensory Integration Disorder. At this point, we had already been through a couple of doctors, and didn’t like either of them, so we were on the hunt for another. The doctor we found in the middle of all this was excellent for a very brief period of time, but it wasn’t long before we started noticing changes in him. He would brush off any questions or concerns I voiced about Payton, telling me she would outgrow her “quirks” and “disabilities” and would rush me out of his office as quickly as possible. He refused any formal diagnosis, even though the state medical was screaming for one, or they would drop Payton. As a single income family, with several other dependant children, we could barely make ends meet on a good day, and we desperately needed the medical. Because of the doctor’s failure to cooperate, and work together with our family to get Payton a formal diagnosis, the state medical dropped us, and we were not able to get any help from the Department of Developmental Disabilities, either.

It was a very saddening and frustrating time for our family. Once again, we went doctor “shopping”.

We finally struck gold. A female pediatrician, who loved and studied special needs children, and preferred caring for these beautiful souls more than “normally’ developing children, asked to take Payton on. She had heard of us through another family with a special needs child. She genuinely cared, and listened to us, the parents, and was a huge advocate for Payton in trying to obtain medical care. We still encountered problems with state medical, and even though she was frustrated at that, she still continued to care for, and do research for Payton, and the family. She didn’t push more genetic testing – by this time, we’d been through the hoops several times, and were tired of putting our daughter through the agony – and also confirmed the original diagnosis of Cerebral Palsy. She went above and beyond what any doctor had done to date, and the care and compassion she showed towards my daughter during our visits to her clinic warmed our hearts. She was absolutely touched by Payton, and still continues to be her doctor to this day.

 

 

Payton ended the Birth-3 program a little over a year ago, and our family made the decision to take on her physical and speech therapy here at home. I am fortunate that I get to be a stay-at-home Mommy, and I love caring for Payton. Our only frustration is we still cannot get the medical help and coverage for her that she needs, and being a single income family, it definitely stresses us out sometimes. Payton has needed valuable equipment so that she can learn to walk, and speak, and the costs for special needs’ equipment is enormous, to say the least. We have recently begun organizing fundraisers via the Internet, and our community, and the reaction has been nothing short of incredible. In the first few days alone, we were able to raise enough money to purchase her own Rifton Gait Trainer, a special therapeutic walker that will enable her to gain more strength and motor control in her legs, so that someday soon she might be able to walk. A beautiful family over on the coast, who also has a special needs child, heard of Payton through the Internet, and donated a wheelchair for her. Both of these will be here this month, and our family is overjoyed – finally, after years of struggling and heartbreak, we are finally getting somewhere in our cause for our little girl. Someday, Payton will need other things, like leg braces and a communication device (we are trying to raise enough money for this one as we speak), and our hope is that between family, friends, and the community, all of this will be possible. We want our baby to succeed, and have the quality of life that she deserves.

We are grateful for the compassion and help of those that have taken Payton’s cause to heart, and continue to do so. We are truly blessed to have these incredible people in our lives, and this world.

Back to the blog itself – I want to not only share Payton and her journey with everyone, I hope to advocate for other families that have children with Cerebral Palsy in the process; I also want to help educate others who are in the dark about what CP is, and how it affects thousands of children and families throughout the world. I hope to offer a beacon of hope to those that have struggled, like us, with the costs of medical care and vital equipment these children need for their success, and possibly meet other families with beautiful kiddos just like Payton.

My ultimate dream with this blog, however, is that someday Payton herself can take it over, and truly speak for herself, sharing her experiences, her joys and her sorrows, and the lessons she’s had to learn and overcome, with the world. I truly believe that she will do so, and I greatly look forward to the day when that will happen. In the meantime, I will do the best that I can to tell her story for her, and hope that somehow, somewhere, her story will touch, and teach, others.

Thank you for all those that support, and cheer, Payton on. Without any of you, none of what we’ve achieved for her thus far would be possible. I am forever grateful to all of you. xoxoxox

Hello Everybody!

 

 

My name is Payton, and I am four years old now. My Mommy says I’m extra special. I have Cerebral Palsy, and I can’t talk or walk. But I know that someday I will. My family loves me very much, and takes such good care of me. With their love and help, I know I will be able to do everything.

Some people don’t think I will walk, or talk, but I know I will. My family has faith in me, too. Sometimes it’s hard, when I can’t communicate like everyone else, but most of the time, my Mommy and Daddy know just what I want, so that helps.

My Mommy is writing this blog for me, telling my story until one day when I can start telling it myself. I think this is going to be very exciting!

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