Our micro-preemie son's journey

Turning Three (12-31-11)

Dear Cayden,

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.

Free PDF    Send article as PDF   

December 31, 2011   6 Comments

Christmas 2011

Wow! What a fun Christmas season this year!

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

PDF Printer    Send article as PDF   

December 30, 2011   No Comments

Christmas Parade and Blue Santa!

12-2-11

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!

12-10-11
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.

12-17-11
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

Free PDF    Send article as PDF   

December 30, 2011   No Comments

Play Date with Robert (11-25-11)

Cayden and Robert had a play date today at the zoo!! We haven’t seen Robert and Michelle since our last play date at the beginning of the year, so when Robert’s mom, Michelle, asked if we wanted to play, we were so excited!

We met up at the zoo the day after Thanksgiving pretty early in hopes that it wouldn’t be too crowded. Cayden tried to share his breakfast with Robert first thing.

We pretty much visited everything at the zoo! Some of the highlights of the day:

-watching the sea lions swim around
-visiting the “ah ahs” and Robert telling Michelle that he wanted one…hehe
-sharing donut holes while looking at the longhorns and painted dogs
-watching the tigers play together
-seeing the lion sleeping peacefully and basking in the sun
-playing in the huts in the African exhibit
-pushing all the buttons that imitate animal sounds
-riding the carousel, Cayden’s first time!
-pulling the wagon together
-pushing each other in the wagon
-showing each other their belly buttons at lunch
-seeing the baby elephants play together in the water
-looking at all the fish in the aquariums
-eating ice cream

They did a great job together with only a few toddler misunderstandings. It was great to hang out with Michelle and chat and watch our boys play. We’ll definitely have to get together again soon and try a new play date location. Thanks for asking us out Michelle! (Click picture to see the rest!)

-Tami

PDF Creator    Send article as PDF   

December 27, 2011   No Comments

Thankgsiving 2011

This Thanksgiving was different for many reasons. First of all, we are living upstairs at my parents house, so we didn’t have to go far…hehe! Second of all, we have two toddlers that are able and will try most of the Thanksgiving food. How fun is that?! Oh, and this is the first year that Nate didn’t have to work on Thanksgiving!

Before my brother, sister-in-law, and niece arrived, Nate built a fort with the couch cushions for Cayden. He had a fantastic time crawling through it and over it and trying to rebuild it.

Our menu included: turkey breast, ham, stuffing/dressing, sweet potatoes, green bean casserole, cranberry sauce (yes, we like the canned kind), turkey gravy, giblet gravy, rolls, pumpkin pie, pecan pie, and coconut cream pie. Can you say YUM!

Cayden and Emily sat at their kid sized table and had a little bit of everything. Cayden then came around the table and sampled everyone’s food from their plates. He prefers to eat off of someone’s plate, rather than his own. Both kids were ALL over the dining room exploring and banging on Grandma’s china cabinets with their forks and toys. They aren’t normally allowed in that room, so it was exciting for them.

After we stuffed ourselves silly, I took the kids out to attempt to get some pictures of them together. Ha! One would run away while the other sat down. One would look away while the other looked at me. It was pretty funny. It took four of us to try and get any decent pictures. Click on this picture to see the rest of their silly cute selves!

All in all, it was a wonderful Thanksgiving. I know that we are more than thankful for our son, his accomplishments, our family, each other, and all the things we have been blessed with. We hope y’all had a wonderful Thanksgiving.

-Tami

PDF    Send article as PDF   

December 27, 2011   No Comments

Preemie Thanks… (11-24-11)

A fellow preemie mama, Jessi, made a request for a paragraph on what preemie parents are thankful for in regards to their preemie to be sent to her with a picture. She did a three part series titled “In Gratitude”. Here is what I sent. You can read all about her little miracle and the other preemies on their blog Life With Jack.

First and foremost, I am extremely thankful for my son’s fighting spirit. Somehow, someway, he survived for about six to seven weeks in utero after my placenta stopped working until his emergency delivery. Cayden Russ arrived in this world weighing 1lb 5.9oz and was 12.5 inches long. Cayden fought hard during his 124 day NICU stay, struggling to overcome what should have been insurmountable odds. His fighting spirit still shines as he works to overcome the difficulties his prematurity have presented for him. I’m thankful for the little things….the little things that we were told we may never get to experience with Cayden. I’m thankful for his charming smile, his infectious giggle, his sweet hugs, and his open mouth kisses. I’m thankful that I get to snuggle him every night and for his little hand as he holds mine. I’m thankful as I watch him walk across the room. I’m thankful that I get to watch him grow and develop and continue to “beat the odds” at his pace, especially when he exerts his independence. My heart swells every time he blows me kisses or as he makes his little index finger and thumb in the shape of an “L” to sign in his modified manner “I Love You”. I try so hard not to take those little things for granted and appreciate them for what they are, everyday miracles. Things could have been so different, yet, God chose me to be his mama, and for that, I’m the most thankful. It’s the best job in the entire world. I love this little boy more than words can express. He’s amazing!


Tami

PDF Creator    Send article as PDF   

November 26, 2011   1 Comment

Limitations (11-23-11)

As a parent, you try hard to protect your child from knowledge or things that will upset them or cause them heart break. It’s amazing how one little person can make you want to throw yourself in front of a bus before you would see them hurt. Yet, you can’t protect them forever and you can’t always make it better. Those are the times you wish you could bundle them up and make the hard parts of growing up and learning easier and less painful.

Saturday, Cayden had his Little Gym class. He loves playing there and has always tried to do pretty much everything, except the air track. The class starts with a warm up of music, names, welcome, walking, then running, and another type of warm up activity. This particular day, the third activity was to gallop. Cayden was doing great until he heard his teacher say “Okay, everyone gallop”!

As soon as he heard this the super frown made an appearance and he started crying. He came rushing over to me and clung to me for dear life. It was then that I realized that for the first time Cayden realized his own limitations and was upset. I continued to encourage him to try, but he was having none of it. I never thought that my two year old child would realize his own limitations/delays and how horribly that would upset him.

It took all I had not to lose it then and there and run out of the building with my son. What do you do as a mom when that happens? How do you make it right?

Can you fix it?

We don’t dwell on the things that Cayden can’t do, rather, we celebrate all the things he can do and are thrilled as he makes progress on things that have been challenging for him. Maybe that has been part of the downfall for Cayden. He didn’t really know that he couldn’t “do” something because of the way we approach things. I mean, he’s seen other kids do things he hasn’t been able to do, yet, since the summer at Little Gym. We assumed, and maybe we shouldn’t have, that watching other kids was encouraging him to try different things and not be as fearful of new activities. Truly, watching other kids has helped, but it seems that despite the positives, our little boy has experienced a HUGE negative and realized the implications for himself. He’s ONLY two!

After that experience, I am 100% terrified of sending Cayden to school in January. Yes, it is a class for children with disabilities, but, there will be plenty of kids that are at a higher level developmentally than Cayden. I’m afraid that he is going to have more days like Saturday where he is heartbroken when he realizes he can’t do something the other kids can do. I think what makes it worse for me is that I can’t be there for him at school. I can’t sit with him and give him the love and support he is going to need. I don’t know how to fix it.

He can’t come home and use words to tell me what happened. I have to guess with the signs he does use and hope that I’m making the right choices and decisions for Cayden. I have to put a ton of faith into other people to care for my son the way we care for him. I have to hope that he finds ways to overcome his sadness and find the strength in his little fighting spirit to push forward and not give up.

As much as I want to be positive about his delays, the fact is, they are there. Cayden is not on par with kids his age in multiple levels. It’s easy to overlook or perhaps “forget” where his delays are until he is around other kids his age and even younger than him.

It’s hard emotionally for us to see the differences, so I can only imagine how it feels for Cayden now that he is recognizing there are big differences and he physically can’t do something. What is going through his little mind? Does he understand that we love him no matter what? We don’t care if he never learns to jump or completely use expressive language? Does he know that all that matters is he try and continue to push forward?

Tami

PDF Download    Send article as PDF   

November 23, 2011   2 Comments

Traveling Vietnam Memorial Wall (11-6-11)

Crosby was honored to host the traveling Vietnam Memorial Wall at the American Legion Hall. We all traveled down as a family to visit. It was surreal walking up and see the massive expanse of the wall of names. Very heart breaking. Cayden won’t remember going, and he certainly doesn’t understand the importance, but we wanted to take him anyhow.

It was very touching to see the little mementos left behind for lost loved ones, people rubbing names, and the tears falling of those having found their loved ones name, and Vietnam Veterans paying their respects.

Here are some pictures. Many of the wall are out of focus simply because the camera could not focus on all the names. Click the picture for the remaining pictures.

 

From our families to the Vietnam Veterans and all Veterans, we thank you. Thank you for your service and sacrifices to allow us the freedoms we enjoy every day.

Tami

PDF Download    Send article as PDF   

November 23, 2011   No Comments

November Update

Therapy Updates:

Speech

Cayden is making some great progress in speech.  He can say “daddy”, “mama”, “mommy”, “hot”, “puppy”, “yum yum yum”, “hi”, “bye”, “bye bye”. He uses these pretty regularly, some more than others though. He mainly uses “hi” and “bye”. Many times he gets words mixed up and I end up being called “bobby” instead of “mommy”. He does a LOT better when it just slips out and he isn’t thinking about it.  “Hot” is typically “hhhhhhhhhh”. He frequently has to be reminded to use his words and repeats them when we say them more than using them by himself.

Cayden can identify multiple animals by their signs only, not using words. He continues to modify his signs. He can stick out his tongue on command, and move it side to side on command. He can now blow, not strongly, but he is making progress. He blows bubbles through a straw and in the bathtub. He tries really hard to imitate people more and we discovered that he can now wiggle most his fingers!!!

He knows about 30+ signs and is working hard to communicate with us. He is even using more of the signs unprompted. Here are the signs Cayden can use: more, please, thank you, up, down, shoes, wash, brush teeth, freeze, listen, bear, cheese, bread, banana, love you, little, big, gym, try, ball, roll, drive, swim, want, cat, help, blue, red, on, off, drink, eat, milk, open, book, sorry, play, all done/finished, hurt, sleepy, jump, bread, music, cracker, go, stop, wheels, where, wait, yes….he recognizes many of the animal signs, but doesn’t necessarily use them. He can imitate most of them though. There are only a few listed above that he doesn’t use on a regular basis, if prompted; many without being prompted now.

It’s super excited to see him progress. I know I cried when he purposely said “mama” for the first time!

Occupational Therapy

Oh boy, Cayden is working hard in OT. They continue to work on fine motor skills and are working on sensory integration, balance, coordination, etc. His OT is planning on creating a sensory diet to help Cayden as he transitions into school. Cayden is pretending more and trying new textures. It’s amazing.

Developmental Therapy

Miss Paula left to be an occupational therapist in the program, so Cayden now has Miss Danielle. She is so sweet and loving. She works with Cayden on a little of everything, including his gross motor and cognitive skills. Cayden now recognizes all his colors and is even recognizing some of the lower case letters of the alphabet.

Health Updates:

Cayden has seen his pediatrician, audiologist, and dentist since late summer.

Pediatrician – Cayden’s weight had stalled again, so we needed to work on getting more calories into him. He was supposed to get another weight check in a month, but that had to be cancelled. Lucky Cayden, he got Hand Foot Mouth Disease AGAIN and got to visit shortly after that. This time he actually broke out in the blisters on his hands and feet. Emily got it right about the same time, so we aren’t sure if they were exposed together or one gave it to the other. Apparently, they can get this up to five times. Ugh.

Audiology – Cayden had to follow up with audiology earlier than planned because he had little speech progression from the start of speech (six months prior). He was so NOT cooperative.  Dr. Cleary was great…Cayden just wasn’t having it. Nothing could distract him to get him to cooperate and listen. However, based on what we did get, he has enough hearing for speech. We go back in December to do his annual hearing test where he can do a play based test instead of the scary sound booth. Maybe that will go better.

Dentist – Daddy got to take Cayden to the dentist this time on Halloween! Of course, Cayden was fine until he had to get his exam. Dr. Carter told Nate that Cayden’s teeth and gums are healthy. He doesn’t have all of his teeth yet and his teeth are very yellow from prematurity related issues, but that’s nothing to worry about. Dr. C expressed that Cayden would probably need oral surgery and some serious work on his teeth when he gets MUCH older from what he can see at this point. He told Nate not to worry about it now, he was just letting him know what he saw. I say, good to know so we can start the savings for that fun.  Cayden got a new tooth brush and tooth paste.

GI – Cayden was supposed to go see Dr. K in October, but conveniently contracted HFM Disease again. We’ll see him in December to discuss the long term plan for Cayden’s reflux and possible endoscopy, as well as, his weight.

Nutrition – Cayden has been gaining bit by bit according to the records for his nutritionist. When he got on the scale at our house the other day, he was right at 22 pounds. It seems that each time he gains, he grows taller. I’m curious to see what his weight looks like at his next doctor appointment.

Tami

PDF Download    Send article as PDF   

November 23, 2011   No Comments

All things Halloween (10-31-11)

 Halloween seems to have come quickly this year. Here is a breakdown of all things Halloween this year:

I made Cayden and Emily’s costumes. Cayden was the Tin Man and Emily was Dorothy.


Cayden and Emily attended the Little Gym Halloween Party. It was busy and it overwhelmed Cayden, so it wasn’t as fun for him as we’d hoped.


I set up a photo shoot of the kids in their costumes. It took an awful lot of pictures to get some decent ones because they are some active toddlers and were less than cooperative.


They decorated their pumpkins with paint…


The kiddos went trick or treating together. That was quite a ride. We started in the wagon and then they both wanted to walk. Emily quickly learned that if she blew kisses she got more candy. Cayden was all about the candy, but was terrified to walk up to houses and knock on the doors. We met some very respectful teenagers that went to great measures not to scare the kids and we truly appreciate that. Everyone loved the Tin Man and Dorothy. They were worn out by time we got back home.

Gamma and Big Pop sent a box of goodies to Cayden where he discovered Dum Dums. He was very appreciative when he realized he could leave the sucker in his mouth and suck on it with relatively no work. Unfortunately, he was super upset when the sucker was gone and threw his stick down.

It was a lot of fun watching Cayden be the Tin Man and experience real trick or treating with real candy involved and not pre-approved treat bags by Mama. Even though I had some less than fun moments with the costumes, I really enjoyed creating them and seeing them in action.

Click here to see the rest of the Halloween fun!

Tami

PDF Creator    Send article as PDF   

November 23, 2011   No Comments