Cayden Talking

-Tami

Nate and I got there a tad bit earlier than needed and even before Cayden’s bus arrived. He was shocked to see us standing there and kept watching us to make sure that we weren’t leaving!

We were lucky to see some of his daily routine: get to school, put back pack up, potty (diaper change) where he washed his hands independently, breakfast (he cleaned his plate!), and then off to field day.

Cayden rode the train.

“Jumped” in the moon walk

Slid down the small slide

Swung on the swings

Drove with Daddy

Drove with Miss R

Tossed and Placed bean bags

Ate a Sno-Cone, well, some of it (look how far he has come with his oral motor skills!)

Put his hand print on the banner for his Relay Races tomorrow

Played on the ipad with his friends

Got his report card and went home with Daddy.  Cayden maintained his progress in four of his IEP goals, three/four of them mastered. He stayed the same with two that he struggles with, and made slight progress in manipulating the playground equipment independently. It appears that he may have mastered another IEP goal relating to his communication too! We are SO proud of him!!

To say he had fun is an understatement. It was pure bliss. School has been an amazing adventure for Cayden, and we are SO thankful!

-Tami

Recently, I’ve read multiple comments, blogs, etc. on how as the parent of a preemie, or a special needs child, your normal is different. It’s no surprise that the words “a million dreams” resonated with me tonight.

When you have a premature baby or a child with special needs, your whole world changes. From the time you find out you are expecting a baby, you start dreaming about your child…maybe before you ever were expecting you had dreams about who your child would be. You think of things like,  “What will they be like? I wonder if they’ll have their daddy’s eyes or my nose?”. That quickly progresses once you learn the sex of your child, you start dreaming about dressing them up, or putting them in sports, or teaching them about your favorite past time.You can’t wait to show them off and have them meet everyone you know so they can see just how danged cute of a kid you have.

Then, as in our case and multiple others, your baby comes too early, or your child has special needs…maybe even both.  Your world starts spinning and you find yourself in a new reality. Wires, monitors, breathing apparatus, nurse, doctors, medical mumbo jumbo, emergencies, surgeries, life and death decisions that have to be made in a matter of minutes, experimental treatments, and anything that will help your child. Of course, that is only the beginning.

You start celebrating bringing your child home, only to know that you will also be bringing many of the above mentioned items home with you with far less medical support, in addition to compounded medicines that have to be given around the clock and a strict feeding schedule packed full of calories. Don’t forget all the different therapies designed to help your child “catch up”.

You focus on all of that and start working on new goals, new dreams. Dreams of getting your child to smile in social situations, eat from a spoon, breathe on their own, eat, grow, not get sick, eat, grow…

Your life revolves around your child and their plentiful doctor appointments, while you juggle all of the above and then some. Sure, you get to dress your baby up, if you have something that is easy to manipulate around all the equipment or if you have the energy to get them all gussied up. Yet, you are restricted to the house, especially during RSV season. On the occasions you take your child out for a quick trip to the store, you are the crazy one with more sanitizing items than the pharmacy, and panicking and turning around to get away if a child two isles over at the store coughs once.

I think that it’s not so much that your beginning dreams have been tossed out, but that they have taken on a new path. A new normal, if you will.You begin to celebrate the calories taken in, the independent breathing, the longer you go between visits to the doctor…so many little things. Your dreams continuously change to things that you have been told your child will never do, or may have extreme difficulty doing. You long for those days and celebrate like no other when they reach those “milestones”, those dreams you have for your child.

It’s different. And, quite frankly, it can be alienating and lonely to travel down that path. Yet, it is the only path you know. People say things like “I don’t know how you do it”, or “I could NEVER do that”, and many other statements that make it seem like you are some saint or martyr, when in reality, you are doing the only things you know how to do for your child.There is no thought to how you make it happen, you just do.

As they grow and they are supposed to hit milestones, things may change a bit more for you. You may hear the words “special needs’ along with other diagnoses that are scary and expected all at the same time. And then, your normal becomes another type of new. You now learn the ins and outs of special education and IEP goals and accommodations and modifications for your child.

And hey, who are you kidding if part of your normal isn’t a bit of jealousy? It’s hard to watch your child struggle with things that come easy to so many others; things that many take for granted. Sometimes, you are even jealous of other babies/children that are preemies or special needs because they can do things your child can’t. Then you feel like a complete jerk. After all, what mom is jealous of another child that is struggling?

As if that isn’t enough to add to your normal, you always carry guilt. It’s harder at times when you watch your child struggle, struggle harder, and use all their energy and determination, still unable to reach that goal, that small milestone. You wonder why your body couldn’t do what it was designed to do and wonder what the hell is wrong with you. If only…

Yes, the “if onlys”, “whys”, and “what ifs” live in your normal. Right beside the, “they said he/she can’t do this and look at them nows”.

At the end of the day, your normal isn’t what “normal” is. You learn to accept a new normal and move forward. You do the best you can for your child. This new normal doesn’t change your love for your child, or the fact that you have a family.

It is what it is., but it isn’t something to be ashamed of. Ever.

Like Whoopi Goldberg said, “Normal is in the eye of the beholder.” Embrace your normal. You aren’t alone.

-Tami

I’ve read articles about PTSD in regards to parents of preemies before and know of several preemie mamas that have had struggles with it. For those that don’t know, this is PTSD and how it is diagnosed, according to the Mayo Clinic website:

Post-traumatic stress disorder symptoms typically start within three months of a traumatic event. In a small number of cases, though, PTSD symptoms may not appear until years after the event.

Post-traumatic stress disorder symptoms are generally grouped into three types: intrusive memories, avoidance and numbing, and increased anxiety or emotional arousal (hyperarousal).

Symptoms of intrusive memories may include:

• Flashbacks, or reliving the traumatic event for minutes or even days at a time
• Upsetting dreams about the traumatic event

Symptoms of avoidance and emotional numbing may include:

• Trying to avoid thinking or talking about the traumatic event
• Feeling emotionally numb
• Avoiding activities you once enjoyed
• Hopelessness about the future
• Memory problems
• Trouble concentrating
• Difficulty maintaining close relationships

Symptoms of anxiety and increased emotional arousal may include:

• Irritability or anger
• Overwhelming guilt or shame
• Self-destructive behavior, such as drinking too much
• Trouble sleeping
• Being easily startled or frightened
• Hearing or seeing things that aren’t there

Post-traumatic stress disorder symptoms can come and go. You may have more post-traumatic stress disorder symptoms when things are stressful in general, or when you run into reminders of what you went through. You may hear a car backfire and relive combat experiences, for instance. Or you may see a report on the news about a rape and feel overcome by memories of your own assault.

I can honestly say that after reading this, I can say that yes, PTSD is something that I have struggled with due to Cayden’s premature birth and the trauma of the extensive NICU stay. I can’t speak for my husband, but I would bet he does too.

My type would be avoidance, emotional numbing, and anxiety. Since Cayden was born, we barely had time to discuss his issues, much less process our feelings. We kind of put them aside and didn’t really talk about them. We were every adjective you can think of to describe scared to death. We had great times in the NICU, like giving Cayden his first bath in the actual bathtub or seeing his first real smile. Yet, most of our NICU experience was laden with trauma each step of the way. Just when things would look up, things would crash around you and you’d feel like you were starting all over again.

Coupled with your own issues, you find yourself attached to other families and babies in the NICU. They become your support group. Your life line. You pray for their babies and offer support to them and you become vested in their well being too. Sometimes, you have really great outcomes and all the babies go home. Unfortunately, that didn’t happen for one of the sweet families we got to know – they didn’t bring one of their babies home.

The NICU staff becomes like family to you. You talk to them daily, sometimes, hourly, or more. They spend more time with your baby than you can and you rely on them to tell you every detail you missed. That was extremely important for us because we both had to go back to work in order to be able to be home when he came home and we weren’t there throughout the day.

For a long time, I had no idea what I was experiencing was normal for a parent after a traumatic birth and having a very ill child. I can remember having some really rough times. Nate even told me that he just didn’t understand because I just seemed angry ALL the time. I didn’t see that. I would get SO upset thinking that he was just being mean and there is no way I was that angry.  Then, I realized, he was right, but I  couldn’t even tell you why I had such anger. I slowly started to notice that things that would normally make me cry (any sappy commercial) didn’t anymore. I figured it was just me having been overexposed to sadness that it wasn’t as sad as other things and kind of wrote it off.

Then there was the night that I think was probably the beginning of the real emotional numbness.  Cayden was moved to his “big boy bed”, an open crib, we had left during shift change to eat dinner and buy him a mobile for his bed. When we got back, I had stopped to talk to another parent and Nate went down to his bed. He came right back to me to tell me to hurry up because they had they had just finished bagging him before we got back. When Nate told me, I don’t remember being shocked or upset, almost like, well, another NICU issue. Don’t get me wrong, of course, I was concerned, but it didn’t send me into the reaction you would expect from someone that was just told that their child had to be manually bagged to survive that moment.

While Cayden was in the ICU, a dear family friend, a second dad really, was admitted into the ICU and doing VERY poorly. I got the opportunity to go see him. He was hooked up to every machine imaginable, intubated, so swollen his skin was cracking, and could only hear us. Yet, when I walked in, I spoke to him and then I checked his vitals on the machines because I could read them. Seeing him in that state would have normally put me over the edge, but I didn’t shed one tear. It was second nature to me.

Then the BIG day comes when you get to bring your baby home from the NICU or your NICU friend’s babies go home. Even though it’s exciting for them and for you, it’s like experiencing another loss. A HUGE part of your world has changed and the people that were in it EVERY day are now gone. It’s a new world; a new experience.

Not too long after Cayden came home, our family friend passed. When I got the phone call, I couldn’t cry. It didn’t phase me and that bothered me in a way I can’t even begin to explain. That’s when I realized there was something “wrong” with me. I was too embarrassed to say anything to anyone but Nate. I didn’t want people knowing that I didn’t cry when a man who was like a father to me passed away.

As time has gone on, I’ve had super irrational fears of things happening again. The first time I had to take Cayden for an echo and they sedated him and his monitor showed his respiratory rate dropping, I panicked. I almost had a full on panic attack and I was by myself. Had it gone down any more than it had, I would have been jumping on the bed and stimulating my child and administering CPR. The reality was that it was faulty leads giving a bad reading. I’d be lying if I said it has gotten easier each time he is sedated.

His surgery after he got home from NICU incited fear. I insisted that he stay overnight, especially with his heart rate sky high and him being so uncomfortable. I needed the reassurance that he was going to be monitored and we would have that support for him if we needed it. What if he needed to be reintubated?? Would I miss something important and time to help him if we went home right away?

Don’t even get me started on the few ER trips we’ve had, getting his MRI done, and other doctor visits.

My anxiety has soared. I can’t watch TV shows I used to watch anymore. I can’t read suspenseful books because I can’t handle it and I love true crime novels. I simply can’t handle it. Even chick lit books that I read because I don’t have to “think” through them sometimes send me into anxiety overdrive and I read the ending so I can make it through the rest of the book.  Who does that? Me. My anxiety drives me to read the end of the book to calm my nerves to finish the book. If something is super suspenseful on TV, I have to distract myself to get through it. At times, that isn’t enough and I start shaking and my heart races. It keeps me from enjoying shows that I would normally watch with my husband.

A month ago, my nephew was born at the same hospital Cayden was. I haven’t been back to the hospital since Cayden was released from NICU. Driving up and into the parking area was surreal. I could see myself standing there talking to other preemie parents, remember conversations, remember feelings…all very vivid. Walking through the hospital doors and taking the elevators we took, then walking past NICU was tough. While writing out the door sign for my nephew, a ton of memories came flooding back that I wasn’t prepared for. I wish I could put into words how it felt to be there again.

I no longer craft like I used to… even though people would disagree, I really don’t. I’m just now getting back into that and even then, finding the motivation is tough. I struggle to remember things; even walking into another room to get something can cause a memory struggle. I stop mid conversation because I lost my train of thought. I’m 31 and shouldn’t be having such issues with my memory. It’s frustrating. I don’t sleep well, I have bad dreams, and can’t always concentrate on multiple tasks. Add that to teaching junior high and you can imagine the daily struggle my brain is having.

I’d like to say that the worst of the PTSD is over, but I don’t think it is. Some days are better than others; reading that it can come and go makes a LOT of sense. Things are pretty stressful for us right now, especially for me in particular with my health. Some days, I seriously think I’m going to lose my mind. It’s tough.

I need to find a  therapist that specializes in PTSD in order to work through a lot of my emotions, fears, etc so that I can move forward and not let it run my life.

For anyone else out there that is experiencing these feelings after trauma, please don’t wait to get help. I wish that it hadn’t taken me this long to realize how bad things really are and how it has affected me in multiple ways. I hope that once I find someone qualified that I trust and feel comfortable with, that I’ll be able to work through this and find great coping mechanisms so that I can add some great quality back to my life. It’s only fair to my son, husband, family, and friends, and myself that I take care of me and be the best that I can be.

-Tami

I think that anyone that has had a child in the NICU can attest to the fact that you spend so much of your time praying and asking for prayers. Yet, obviously, they aren’t always answered. Many times it feels like your world is crashing down when you hear news that goes against everything you prayed for…

I think these lyrics have it right, “Sometimes I thank God for unanswered prayers, Remember when you’re talkin’ to the Man upstairs,That just because he may not answer doesn’t mean he don’t care, Some of God’s greatest gifts are unanswered prayers”.

The night we found out Cayden would be here, we prayed for our baby to be okay. We prayed that he would do well. Despite everything, he started out okay for a baby his size and then things quickly went downhill. We rode that roller coaster through the highs, lows, and loop de loops as Cayden journeyed through NICU. We prayed many things, from pee to no brain bleeding, and all sorts of things in between.

God answered many of our prayers, allowing us to bring our baby home from NICU. However, many weren’t answered the way we wanted, wished, and hoped for. I’d be lying if it didn’t hurt when we realized that it wasn’t going to go the way we hoped. It was tough to watch our child struggle and know there was nothing we could do.

And, yet, God knew what he was doing all along. He still does. Minus the pain for my child and the struggles he will face in life, I wouldn’t trade anything. Absolutely nothing. Cayden is a direct result of the plan for him, through prayers answered and those not answered. Cayden is quite a gift.

I have to wonder that if all our prayers were answered, would we have our sweet sign for “love”, those amazing hugs, would I be called “Bobby”, would he have the sweetest disposition, would we hear the most infectious giggle and see that bright smile, would we have the same appreciation for all the little things, and so much more?

I don’t know and don’t want to know the answer to that, but I do know that I’m glad that we have Cayden the way he is. Labels and diagnoses and all. He is our everything and we love him to pieces.Battle wounds included. I’m thankful every day for those unanswered prayers that allows me to be “Bobby” to this beautiful little miracle, our son, Cayden.

-Tami

Dr. R had him “run” down the hall and did his evaluation and asked questions in regards to his development. He looked as his little legs and his knees. Cayden has knock knees in addition to his out toeing, etc. Dr. R made a referral for Physical Medicine for possible braces, shoe inserts. All was great, with a “looking good” from Dr. R to Cayden. A zillion stickers later, we got our appointment making reminder card and said our byes until October.

The next morning, I was looking at his paperwork to get the number to call PM for his appointment when two words jumped out at me and stopped me in my tracks, literally.

Cerebral Palsy.

I didn’t know what to think. Tears came to my eyes and then I let it just sink in.  It wasn’t mentioned, yet, I wasn’t upset about that. For as long as I can remember, we have been told that we should expect some serious issues in regards to Cayden’s development. We always knew that Cerebral Palsy has been a possibility. I think that we’ve known at some point this would be something we might face. When Cayden’s MRI results came back and we realized the impact it is having on him and then we read the PT report, I just “knew”. Maybe that’s what I wasn’t upset the words weren’t spoken to me at the appointment. I also realize that Dr. R knows that I’m on top of things with Cayden and that he assumed that I knew that would be coming.

Around lunch time, I emailed Nate and told him that way. We emailed back and forth between each other to grasp this new diagnosis and label for our child the best we could while we were both at work. I spent the rest of the afternoon reading up on CP. I made his appointment with PM. We told our parents and have sat on this for a bit. And now, well, here it is.

It’s a diagnosis, another label. It doesn’t change our son. Cayden is still Cayden.

-Tami

The next day, it was his turn to ride the bus. To prepare him, we put ear muffs on him to muffle the sound. He walked out with his backpack and lunch kit to the bus stop (the end of the driveway) and we waited. He was excited when he saw the bus, but that is where the excitement ended. When it was time to get on the bus, he wasn’t having it. They had to take him from me with him crying and reaching for me. When he waved bye to us, he lost it and then so did I. Thankfully, the bus aide called a few minutes after they left to let me know that he was just fine and enjoying the ride.

Bus time was going great until we had the first weekend. He panicked and had to be pried off me while he signed “want” and reached for me, crying. It was horribly gut wrenching. He was okay in the end and he has LOVED riding the bus every day.

He now uses a “go talk” device at school to help him communicate and has already mastered three of his IEP goals!!! One he already knew, but two others he had struggled with. He can name ALL his body parts, well, point to them. He can recognize his name in print, and he can recognize ALL of his colors. He could match them before school, but couldn’t find them when asked. We are so proud of him. He is doing well in speech and trying to imitate sounds and words. He is learning more signs and is just loving school. I was scared that we weren’t doing the right thing, but it has been a wonderful thing for Cayden. We can’t wait to see what else he wows us with this year.

So far some of the exciting things he has done at school are:  had his class picture (as a group), wore his first spirit shirt, had a Valentine exchange, is collecting box tops, getting to order his first year book, and he will have his first book fair soon!!

Tami

The other pictures can be viewed in the gallery.

One day this fall we were on a mommy and Cayden date at Schlotzsky’s. You were sitting across from me in a big chair and I looked at you and realized just how much you are growing up. There is this commercial by State Farm insurance that shows this dad talking to his daughter about safe driving. When it cuts to the daughter, all the dad sees is his little girl of years ago. In reality, she is all grown up. At that moment that I looked at you sitting across from me, I realized how that felt and I started tearing up. I know, it seems silly because you are only three today, but the changes this year have been astounding!

It seems like yesterday that we saw the two pink lines on the pregnancy test and were stunned, surprised, and overjoyed all at the same time. We couldn’t wait to be parents! Of course, we had no idea the journey we were embarking on and, honestly, even if we did, I’m not sure we could say we would change things.

This has been one heck of a year! The roller coaster has been all over the place and just when we think we are on steady ground, we do a loop-de-loop and find ourselves all sorts of turned around. Some loops smooth and others that have us ready to pull the emergency brakes!

This year, you had your first play dates and met some wonderful kiddos your age, including your preemie buddy, Travis. It was hard for me to take you around other kids, but we knew we had to socialize you. Even though you didn’t know how to play with them, you sure did enjoy observing them and even trying to interact with the other kids. You visited San Antonio for the first time. Gamma and Big Pop came with us. You rode a boat, went on a drive through safari, visited the Alamo, walked the River Walk, sucked from a straw for the first time, and played at the park. You had such a great time.  Not long after vacation, you proved to us that you know that a spoon and fork are not just fun waving items! You still prefer your hands, but you do enjoy giving utensils a good go. And who knew that you would be drinking exclusively from straws of multiple sizes and types by the middle of the summer?! You have quite the fondness for sweet tea, just like your mama!

You enjoy being outside and would much rather play there than inside. It’s been incredibly fun watching you explore and discover the world around you. You love sticks and rocks of all kinds and have been known to carry them around with you. We’ve had to limit them inside the house because you have quite the throwing arm…You enjoy walks in your wagon, on your tricycle (which we push you on), your police car, and even riding your miniature four wheeler.

You make us giggle with little OCD tendencies. If you move things in the bathtub, you rearrange them just like they were before you moved them. You line your trains, markers, crayons, etc. up evenly with each other and you are known to melt down if you don’t get it just right. You insist on doing things a certain way and things being just so! You have done more hands on activities, like dying Easter eggs, making ornaments, putting baking soda into vinegar to make bubbles, helping to make cookies, etc.

You keep us laughing with your quirky toddler ways. When you do throw a tantrum, you are SO careful about it. First, you sit down carefully on the floor, then you slowly put your feet out behind you and lower your upper body to the floor. Then you carefully turn over and once that is done you start screaming and crying. You are the only kid I’ve ever seen throw a tantrum like that. I know we aren’t supposed to laugh, but it sure is funny. Speaking of tantrums, you are king of pretending to cry and be upset and when I call you on it, you start laughing. What a silly boy you are!

Have I ever told you that you give the very best hugs? You do, and I love it when you get in my lap and lay your little head on my shoulder and throw your arms around my neck. I treasure those sweet moments. You tell us you love us by singing “I love you” with your little hand making an “L” shape because you can’t manipulate your hands to do the correct sign. Some people probably think we are letting you call us a loser because that’s what that sign normally means, but really, we are just exchanging our “love yous” with each other. You either turn your head so we can kiss the side of your head or you give us an wide open mouth kiss. It’s pretty funny to you when we ask for a kiss and you turn your head or you say “no”!

You’ve really exerted you independence this year. You want to do everything by yourself and often, you want to do it for us too. You are quite the little mimic these days. You’ll mimic as much as you are physically able to do. It has definitely been a year of  giggles. Other than hearing your little voice, nothing is sweeter than your laugh. I love when you get the giggles over something you heard or saw. Usually, it causes everyone in the room to get the giggles with you too. As the year has progressed you have shown a love of playing pretend. You cook us meals in your kitchen, you feed your new baby, you even feed us with your play food, and pretending to take our picture saying “eeseee”! You love it when someone picks you up and dances with you around the living room, giggling and signing for “more”.

You got your own big boy bed this year and even moved bedrooms to accommodate all of your fun stuff! Some of your favorite toys this year are: Chuggington trains, play camera, trampoline, hot wheels/matchbox cars, your new tools, books, anything outside, puzzles, your learning games, big cars and trucks, legos, play kitchen, Mr. Potato Head, and your paints.

We enrolled you into The Little Gym this summer. At first, you were in sensory overload and I thought we had made a HUGE mistake. Then, to our surprise, you started enjoying gym. You have moved up to the age appropriate class and are such an amazing listener. Even if it scares you, you almost always try to do a new skill. You can now do a forward roll, have developed better upper body strength and in less than six weeks of time, you made three months gain in your gross motor skills. It’s been worth every penny seeing you become more confident in yourself.

We had record highs and a serious drought this summer, so swimming happened in the evening hours. You wore big kid floaties in the pool this year and did incredibly well “swimming” around. You weren’t even scared of the deep end, even if it made everyone else catch their breath and promptly return you to shallow waters. You even let us show you how to float this year and tried to jump off the side of the ledge into the water.

This year, your Uncle Adam got married to Jennifer. You were an honorary member of the wedding party. Let me tell you, there is nothing cuter than you in tiny Wranglers, boots, and a western shirt. While shopping for your tiny wedding attire, we discovered that you would let us put a hat on you! So, we bought two. Oh,and talking about cute… I can’t wait to show your future dates the adorable picture of you in your tool belt and Grandma’s high heels! What personality!

Emily has become your steady play mate. It’s the sweetest thing watching y’all hug each other and show sweet cousin love. Y’all still have sharing wars and the toddler tantrums that come with that. Yet, you both get so excited when you get to play together. Recently, you both think of each other more often that not and bring the other one things you want to share with them or you want them to have.

You had your first kid friendly birthday party this year on your half birthday. You had an amazing time! You were invited to a few other kid friendly birthday parties this year. At one, you rode a horse for the first time! You weren’t overly sure about that, but you loved feeding the horses carrots and had no qualms about sticking your hand dangerously close to their rather large chompers.You still love animals and I frequently find you loving on the cats and dogs, even snuggled up next to them. It’s just so sweet.  I would venture to say that if I let you, you’d snuggle with the lizards and turtle too!

This summer you officially got your first real illness since being home from NICU! It scared the pants off of us. You have been diagnosed with Hand, Foot, and Mouth disease twice since the summer and then some nasty sinus infection/virus recently. Unfortunately, it’s just a horrid little side effect of making new friends and trying out new places. Your immune system just isn’t ready for all that is out there and you were unlucky enough to get some bugs this year. Watching you feeling like crud is really scary and hard for us, yet we are super thankful that it wasn’t worse.

Developmentally, you never cease to amaze us! You blew us away when we realized that you knew the entire uppercase alphabet in a multitude of formats! You can match things like a pro and are constantly improving your fine motor skills, and other cognitive skills.You really love to learn. You know pretty much all of your body parts and can point them out to us on you, a doll, and another person. You know many of your numbers and are learning lower case letters. You can even distinguish the differences between similar objects.

You finally started speech therapy with Miss Donna early this year. The struggle to get these services was completely worth the wait because you just flourished. After only a few visits, she had you blowing through a recorder and making sounds that we hadn’t seen or been able to get you to do before. You started learning more baby signs so that you could communicate with us. Through the course of speech therapy this year, we have discovered that you know so many words and phrases and can use them appropriately, but only spontaneously. It indicates possible childhood apraxia of speech. You have an oral motor delay that causes you to be unable to make certain facial movements, which explains your previous inability to mimic facial expressions and smile on command. This oral motor issue affects your speech dramatically. You’ve pushed through some tough times this year to overcome and work through the frustrations you are experiencing from not being able to make your body do speech wise what your little mind knows you want to do. Amazingly, you can now stick you tongue out, smile when asked, move your tongue side to side, drink from a straw, blow bubbles, and say “bye”, “hi”, “daddy”, “mommy”, “mama”, “puppy”, “baby”, and “go”! Your mind tells you that you are saying “mommy” but it comes out as “bobby” quite often. It took us a while to figure out who “bobby” was, but now, we know we get it and it is music to my ears! You’ve learned over thirty signs, shown instant mastery of using communication books, and are using many signs unprompted and learning to use the signs to form sentences/phrases.  It’s adorable to see you communicate in sign language with your surroundings, even using it with the animals. The signs have helped cut down on the frustration tantrums, but we still see them, especially when you know how difficult something is for you that we are asking you to do in therapy.

You’ve always struggled with certain sensory input and this year we were able to complete a sensory profile for you. You were diagnosed with auditory sensory processing disorder and oral sensory processing disorder. At the beginning of the year, you would have a complete meltdown and panic attack over loud sounds or unexpected sounds. Throughout many efforts this year, you have been able to tolerate more sounds and we have learned to see the distress signs, which helps us help you quicker. You still put everything in your mouth. Seriously, if it fits, it goes in your mouth! You frequently chew on your socks or shirts, and even your shoes at times. Yuck! We have noticed more sensory issues as you have gotten older. You are extremely tactile and you still have aversions to anything sticky, dirty hands, many textures, etc. We have to give you credit because you have overcome many of the other texture aversions, which has enabled you to add more foods to your diet. You rarely sleep through the night and we think we have narrowed it down to sensory issues. We are learning ways to help you wind down at night so that you can sleep better. Some nights are more successful than others. Many nights you end up snuggled up in bed with us.

We are pretty certain that your diagnosis of cerebellular hypoplasia is what is causing your global motor delays, including your speech issues. You are still making great strides and we all have faith that you will continue to amaze us. Your neurologist, Dr. Rivera, thinks that because you have made amazing improvements developmentally this year that your little brain is still finding the alternative paths and forming the pathways needed to do certain skills.

The really cool thing is that your little mind is just in overdrive observing everything around you. You are a sponge, just soaking everything up. Then you blow our minds by showing us you know things we had no idea you knew, especially because it wasn’t a skill we had worked on, like letter recognition!  More cognitive awareness is what all parents want for their children as they grow and we are no different. You’ve come so far and are doing such wonderful things. The downside is that with that awareness you learn and realize that you have limits too. My heart broke this year when you realized you couldn’t do something and were upset. As a mom, it’s tough when you can’t fix what is making your baby hurt or sad or frustrated. And this, well, I can’t fix it, just encourage you to keep trying and pushing forward.

Now that you are three, you are aging out of the ECI program and will begin PPCD (Pre-school Program for Children with Disabilities). I am NOT ready for this big change in your world. I am worried sick that you are going to regress and be too overwhelmed to feel comfortable. It’s super scary to hand you over to someone to care for you during the day that I don’t know and that doesn’t know you like I do. It’s been very bittersweet saying “bye” to your therapists who have done so much for you. In just a few short days, I’ll be packing your backpack, lunch kit, and putting you on the school bus. How is that even possible?! Somehow, I think you’ll cope better than I will.

Medically speaking, you are hanging in there. You still struggle with reflux and we have discovered after two ER visits, another way to make us panic, that you have some severe constipation issues as well. We’ll be discussing the long term plan for the reflux soon, as we want to make sure that the treatment you are getting is more helpful than harmful.You are practically caught up to your age for your height, but are still struggling with your weight and continue to keep a failure to thrive diagnosis. You teeter between 20-22 pounds depending on the scale, clothing, etc. The constipation requires certain treatment, while you weight gain needs another. Needless to say, we walk a fine line making sure you get what you need. You continue to have great days for eating and some really rough days where you don’t eat or drink much of anything.

You had trouble with your most recent hearing test with an indication that you have fluid in both ears, even though you aren’t showing any symptoms. We are in a watch and wait pattern on that. You got excellent news at the dentist – you have healthy teeth and no cavities! That tickled us pink, seeing as how you eat things on a regular basis that would make the dentist cringe.

After your PPCD evaluation, we discussed your muscle tone with the pediatrician and your gait. You still can’t run or jump and you tend to turn your toes out. We’ll be consulting a pediatric orthopedic doctor to see if you need braces or if this is something that we just need to watch.

This year has flown by! We’ve cheered as you have mastered or learned new skills. We’ve cried for you when you started realizing your limitations. We’ve know that you may never be able to do certain things, and that is absolutely okay. Everyone has something that they just can’t do, but everyone has a talent. I hope that as we start the new year, you will be able to see your strengths and not be so discouraged by things we can’t change. That’s a tough lesson, especially for a three year old little boy. This new year will bring new opportunities and challenges for you. We hope that you continue to meet them head on and give them your best shot. You have a fighting spirit Cayden. You’ve overcome so many odds. Many people thought you’d never survive such traumatic arrival. Look at you now!

Cayden, you are the BEST thing that has ever happened to me. I love being your mommy more than anything in the world. Your big smile and sweet laughter always make things better after a rough day. Like I said earlier, if we could change things, I’m not sure we would, simply because everything you have been through has made you who you are and that, well, it is just amazing! I can’t wait to see what the road to four brings for you, but, can you not get there so quickly?!

Happy third birthday!! I love you all the way to the moon and back my sweet, silly little boy!

Love,
Mama

P.S. Click the bottom picture to see the rest of his three year pictures.

Christmas Eve was really a great and relaxing time for all of us. Nate was home for the first time for Christmas Eve, so we didn’t make any big plans. Cayden didn’t nap well and was exhausted. We listened to his Santa video and then we tracked Santa too! Soon enough it was time to get Cayden bathed and into his Christmas jammies that Gamma and Big Pop sent him. He was too tired to make cookies or even put out the magic reindeer food, so we upgraded Santa and the reindeer to cake balls. When we got Cayden into bed, we read him “The Night Before Christmas” and got him to sleep. He was SO exhausted that he only woke up ONE time!! Santa’s helpers enjoyed putting together the awesome things Santa left for Cayden upstairs and then the things left for Cayden and Emily downstairs!

We were really surprised when he didn’t get up too early Christmas morning. We heard him stirring and called Gamma, Big Pop, and Aunt Carly on Facetime so that they could be a part of Christmas morning with Cayden. My parents came upstairs to see too. Cayden was a little overwhelmed, but not nearly as bad as last year. Once he saw his trains, he was so excited! We had to pry him away to open his other gifts. He was a bit miffed at first until he started ripping paper and then he LOVED it! He kept signing “more”, “more”, “more”! It was so funny.

After we finished gifts and Cayden played with some of his new toys, we went down and had a yummy breakfast. Soon after, Uncle Adam, Aunt Jennifer, and Emily showed up for family Christmas where EVERYONE was spoiled! The kids enjoyed each others gifts and I know we loved ours. I was blessed with a new lens for my camera and other wonderful camera accessories from my parents and my husband!

Then, Santa called and told the kids that he left some items for them in the other room! Emily got a kitchen and Cayden got a trampoline! Together, they were left an easel. Excited doesn’t even cut it…they played and played and played with all of their new toys.  They jumped on the trampoline together, well, Cayden bounced and Emily jumped. We ate finger foods instead of a traditional dinner and then the kids took a much needed nap. After Cayden’s nap, we decided he needed to switch rooms because he has SO much stuff and we didn’t know how we were going to fit it. So, we finished Christmas off by relocating Cayden. It was wonderful and relaxing and just fun. I’m so thankful that we got to give more of the family a chance to be involved via technology and that we could all be together for Christmas.

-Tami

Click here to see the rest of the pictures

This was an awesome year for the Blue Santa float at the parade this year. We had our snow machine and lights on our trailer and an incredible new Santa chair. The best part was that Cayden rode on the float with us! We debated on whether or not to take him, but decided to give it a try. I bought him heavy duty ear muffs and a really thick winter hat to wear to muffle the sounds. With his auditory sensory processing disorder, we were really concerned that he may not make it through the parade. Even though there were loud sounds, our police sirens didn’t get used too much, so it helped. He did have some meltdowns, but we got him through it and he enjoyed himself. He was even dancing and waving to people!

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Blue Santa wrap day -we had such wonderful help this year and were able to get all but four of our 110 families gifts wrapped! Here is a small sampling of the completed gift bags.

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Blue Santa delivery day – everyone’s favorite thing was a huge success this year! We delivered to 25 excited families! (The rest of the families opted to pick up their gifts the following day.) The police chief drove the bear cat from the SWAT team to lead our caravan and we had several officers come out in patrol cars to be a part of this awesome day and help with traffic control. The snow machine was at use again sending out snow around town and delighting kids and adults alike. It is my absolute favorite thing to see all the lights and sirens blaring as we make our way house to house throughout the city. Well, okay, maybe it is the second favorite thing because the absolute best is the smiles and tears on the families faces as they get their gifts. One sweet little boy was surprised with a bike and the smile on his face couldn’t have been bigger. He couldn’t stop smiling…and moments like that remind everyone why we do what we do. (Click the last picture to see more…more pictures will be added soon.)

-Tami