Our micro-preemie son's journey

Fantastic Four! (12-31-12)

Dear Cayden,

New Year’s Eve is always an emotional day. It’s the day I met you, unexpectedly, for the very first time.

Last night, before bed, we talked about your birthday. I explained how you weren’t moving much and mommy went to the hospital and you had to be born because you were very sick. I said that you were SO tiny and you informed me that you were small like Baby Luke. I told you that you were MUCH smaller than Baby Luke. I explained how the doctors, nurses, respiratory therapists, and hospital staff were so amazing because they helped you come home with us 124 days later. You said that the doctors helped you get better at the hospital. How right you are, baby.

What you don’t know is how much you fought to get better too. How many people prayed for you, sent positive thoughts, and just were in awe at this little bitty baby struggling and fighting to overcome more than most people experience in a life time. Daddy and I believe that your fighting spirit and your strong will helped you to survive what was terrible odds.

We still see that fighting spirit, just in a more toddler/preschool manner. After you turned three last year, you started PPCD, or preschool program for children with disabilities. It was a little rocky at first and mommy had a hard time accepting that you were old enough to go to school! Soon, you LOVED school and getting on the school bus. You were thriving and working on your goals. There were bumps in the road, but as usual, you would find ways to overcome them or work with them.

Before summer rolled around you weren’t talking much at all. You had maybe a handful of words and many were not what you were trying to say. I was your “bobby”, not mommy. Then just before school was out for the summer, you started saying a few more words. During the summer, you were working hard to repeat what we were saying. Then, just one day over the summer, you started really talking. It just came out of nowhere, just like Mrs. Donna said it probably would. To say we were ecstatic is an understatement! Your little voice was music to our ears.

Over the summer, you got your SMO’s to help straighten your ankles when you walked so that you would, hopefully, eventually be able to run and jump and have some better balance. The difference in your little alignment was noticeable immediately.

You also were told that you were going to be a BIG BROTHER to a little sister!

Soon, summer was over and you headed back to school. You had a much more difficult time going back after summer than you did when you started school. We noticed that your sensory processing disorders were getting worse, not better with more communication and cognitive ability. Large crowds, unfamiliar places, any unfamiliar sounds, loud sounds, changes in your routine, etc really set off a sensory meltdown. We found that using headphones to cancel some of the sound helps and you take them to school daily. You also have a whole host of chewy tubes for the oral sensory stimulation that you need. You’ve also struggled with some serious anxiety that we are watching and working on with help from your teachers and pediatrician.

Despite the struggles with sensory overload, you have absolutely thrived this school year. You have met almost ALL of your original IEP goals and have gone above and beyond what we expected. We weren’t surprised, as that’s how you always do things. You go above and beyond and in your own time, surprising us in ways we didn’t know possible.

One of the biggest things that you have made progress with is your speech! Language wise, you are above your developmental age. Considering that you weren’t verbal very long ago, that is just amazing! You have become much clearer in your speech, though we still see signs of the apraxia. You talk in sentences and work towards conversations with people. You are VERY polite and use your manners, which we love.

You even are working at getting both feet off the ground when you JUMP! Yes, jump! How awesome is that?!

Even more amazing, is that we discovered that you an incredible sight word vocabulary. We guesstimate that you somewhere over 300 sight words. We thought it was a fluke at first that you knew the words you were “reading”, but no, not at all. You love to read or be read to and you especially love to learn. Your teachers all remark at how hard you work in school and that you will work so hard to get things done, especially if you get to go “read” to other people.

You have quite the little imagination. We are seeing you make strides in pretend play and wanting to involve yourself in play with other kids and adults, not just play beside them. You love to play in your McDonald’s and with your cars, and your people. You have them make conversation and chase each other and race. Every toy you play with takes on some persona. It’s absolutely fun to watch you.

You were able to participate in the Collen Walker Relays and the Baytown Special Rodeo, all designed for kids that have special needs. With assistance, you were in your element, getting to do things you normally are unable to do/would not have access to. You’re favorite part was being cheered on. You love being the center of attention.

You can be a bit bossy. Daddy says you get that from mommy. I say it’s just your strong will and stubborn streak. We were told at your annual ARD that you made another student in your class come back to the table to work. That you actually walked over to them, took them by the hand, and brought them back to the table and told them it was time to work!!

You want to be very independent and let us know very quickly that “my do it!”. Okay, buddy. We are working with you to learn more self-help skills, like brushing your own teeth, washing in the bathtub, learning to use the potty, getting dressed and undressed, etc. Those things are still things that you struggle with, but we just know you are going to get there.

You’re favorite thing to tell us now starts with, “me/my not do…” and then fill in the blank. It’s so funny to see you standing there with your little arms crossed and this serious look on your face telling us that you aren’t going to do something. Who knew that in less than a year’s time, that we would get to hear you tell us that you weren’t going to do something? Don’t get us wrong, you don’t win out, but we certainly listen to your concerns, while appreciating this little stage of development.

At the same time, you are absolutely an amazingly sweet little boy. We’ve noticed how in tune you are to other people’s emotions. You get very upset if someone is upset, angry, crying, etc. You want people to be happy. We want you to know that it’s okay that someone is angry or experiencing whatever emotion they may be feeling. You aren’t responsible for their happiness, which you seem to think you are. You are super social and love talking to anyone and everyone. You are such your mama’s boy in that department! You love to hug people, even strangers!

In true Cayden fashion, you express your love for the people you care about frequently. You talk of how much you love your family members, teachers, friends at school, etc. It’s so sweet to hear you express these big grown up emotions in a little guy fashion. You even talk about loving your sister and how you are going to help her with everything!

Unfortunately, we had to say goodbye to your best kitty friend, Mr. Kitty, this year. It was hard to explain that to you, but you took it in stride for such a small guy. You talk about him from time to time and tell me that you see him and that you love him and he loved you.

Just the other day, you came to me very sad telling me that “my best friend not here”. I asked you who that was and you told me “Daddy”. My heart melted. You love your daddy so very much and it shows. When he gets home from work you always scream out, “Daddy!” and run to him for hugs. You love to play with him and you tell me frequently that “daddy show me how”.

We’ve discovered that you LOVE taking pictures and having your picture taken on our phones. I always find lots of self portraits or pictures of your toys or other people from the store on my phone. It’s cute and always a surprise. Sometimes, I even find videos.

You are still very much a cuddle bug. You love to be rocked before bed and to snuggle up with mommy or daddy. Frequently, we find you in bed with us at night. I love that you still like this because it won’t be long before you tell me you are too big for that.

This is the year we have struggled with illness for you. You’ve had a great run with very little illness since you came home from NICU, but this year was different. You had several upper respiratory infections/bronchitis that needed breathing treatments and some nasty ear infections. Thankfully, we were able to you better and you didn’t have to struggle too much. You were so sweet about it too, always telling the doctors “thank you for making me better” when we would leave and giving them hugs.

Early in the year is when you were given “the diagnosis”. We were told you had Cerebral Palsy, affecting your legs. It was hard to hear the words, but no diagnosis or label changes who you are and that we knew.

Otherwise, medically, you are doing quite well. You still struggle with reflux and weight gain. You started an appetite stimulant to help you want to eat in an effort to get you to gain weight. You are hanging out in the 24/25 pound range. You are wearing 3T clothes only for the length. You measure more size wise in the 12/18 month waist. Developmentally, you have made amazing strides cognitively and with speech, yet still struggle with your motor skills, sensory processing, and anxiety. Dr. R think that because you are still making gains with motor skills, that you’ll eventually get those skills locked down. How awesome is that?!

As we begin the new year tomorrow, you’ll experience many changes. As you told me, you’ll be “four den five”. Yes, baby, but please don’t rush it! Soon, you will be a big brother and we’ll go from our family of three to a family of four. You will be going back to school and working on new goals and going into a co-teach setting. Daddy and I think that as amazing as this last year was for you, that four will be absolutely fantastic! We can’t wait to see you continue to become the little guy that you are supposed to be.

Just yesterday, I told your daddy that despite all the struggles you have faced, overcome, and still are working with/through, that I wouldn’t change anything about you. I’m so thankful to be your mommy. I love you SO much little one! You bring so much joy to my world and show me how much the little things count.

Happy Fourth Birthday, Cayden!

I love you all the way to the moon and back,

1 comment

1 Mimi and Grandpappy { 12.31.12 at 3:11 pm }

A heartfelt, loved filled tribute to your beautiful son, Cayden, on his very special 4th birthday ! Our love to all of you..

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