Friday, December 5, 2014

And then there were 3...

I must admit, it feels a little strange to be writing this post. I never imagined that I would have three children. I never planned on it, and we all know... I'm a planner. So, when we found out that I was pregnant, I was in shock. Ok. Not really in shock. More like completely terrified!

I had just went back to work, teaching 4K part-time, and I was really enjoying it. I felt like I was able to get out of the house, do something I was passionate about, work with some fabulous women, but still have time to spend with your brothers. So, when I had an inkling that I was expecting, I avoided it. Literally. For nearly two weeks. I just wasn't ready to find out for sure. And then when I did, find out "for sure",  I wasn't so sure how to feel about it!

Of course, there were the regular feelings I'm sure most women experience with a surprise pregnancy... Things like: "But, I just went back to work" and "The boys are starting to get easy and now I'll be starting over with a baby" and "I never wanted 3 kids... Where on earth are we going to put this child and all of it's "stuff"?"

But, for me, there was also fear. This underlying fear of the unknown. What would I do if something was "wrong" with you? That sounds horrible, but it's what I felt. The "what ifs?" were completely terrifying and I wasn't sure I could risk the fact that, at the end of the day, there could be something wrong and there would be nothing I could do... And, if there was something "wrong", how would I manage two children with special needs?

And what was even more terrifying than the idea of having a child with medical fragility, was my fear of myself. My postpartum with Jayce was hard. Like, lasted for over one entire year, HARD. Yes. A lot of it was centered around Jayce's illness and diagnosis and never-ending doctor visits, but it was still there. I ask myself often, "would've the postpartum been as bad if Jayce were healthy?" I'm not sure, but I wasn't ready to risk it. What if I couldn't handle a third child? What if I lost it again?

It was all just too much. So, I visited with my doctor and she began to ease my mind. We did some  testing to rule out any medical issues that can be detected early, had 2 ultrasounds (one at 7 weeks and then again at 12 weeks), and we talked... A LOT. We talked about all of the things that I was scared of. And I started to feel better.

Then, after our 12 week ultrasound where I saw you wiggling and stretching with legs and arms and a beating heart, I began to feel joy and happiness and excitement. And that joy was unlike any other when I finally told your biggest brother Wil that you would be coming after he turned five.







Wil has been the only person in this family who has been asking for you. He's been asking for another baby for over a year and the fact that I could tell him his wish was coming true was one of my best days with him thus far. Seeing the excitement in his eyes was beyond what I could express to you. He will love you so, so much. He swears you are a girl baby, by the way! Has said it from day one... I told him we'd find out before Christmas!

You see, I think you were meant to be. You were meant to be ours. You are the final piece to this family puzzle we've created. And, you will be giving ME something back that I didn't get to experience with Jayce. Something I've been longing for.  I'll get to experience (God willing) a beautiful delivery, a family suite where people will visit and hug and kiss on you, bringing you home to meet your brothers when you are just days old, late-night feeds (helpfully I'll be able to nurse) and snuggles. I'll be able to watch you grow and learn without fear. I'll take you in and bond with you instantly. I know I will. I have to. This is my chance to experience a new life all over again and I feel so blessed that I have this opportunity. I will not let you (or me) down.

Now, I am almost 20 weeks pregnant. Almost half-way there. I feel you move ALL THE TIME and it's like experiencing it for the first time. Maybe it's because I'm older. Maybe it's because of all that I experienced with Jayce, but whatever it is, I am taking this all in. I'm noticing everything. I'm enjoying watching my body change and grow and I'm loving knowing that you're in there. I don't take it for granted. Not one day.

Please know, that even though you were our surprise, you were completely planned for. I cannot wait to meet you! I pray every day (and have an entire calvary praying right along with me) that everything will be ok. See you soon, little one...


Thursday, November 13, 2014

Toddler Beds Rock! No. They don't.

So, here's a good "Mom" question. Do you have one child who really rocks at something and another child who really sucks at it? I do! Ok. That doesn't sound very nice. Let me explain...

It seems like everything that was "easy" about Wil is super hard with Jayce. For example, Wil was the EASIEST baby ever! Slept through the night (seriously, like 12 straight hours) by 3 months old, never cried unless he was hungry, woke up with a mouthful of teeth (ok, maybe not, but I never noticed the new ones coming in because he NEVER cried or fussed about them), traveled like a pro (we took him to Cedar Rapids, IA at 10 weeks old to visit his Great Grandpa - an almost 4 hour trip - and he was a peach), eats EVERYTHING IN SIGHT, and transitioned to the toddler bed TWIN bed with ease (he NEVER got out, just would call my name when he was ready to wake up).

All of those things.... Jayce completely sucks at! I'm sorry. But, it's true! He just sucks at them! He was the world's hardest baby - Had colic (serious, legit colic) until 6 months old, didn't sleep through the night until like 18 months old, was a horrible "teether", hated the car until he was faced forward shortly after his first birthday (even now there are times when he's a whiney, fussy, punk!). He doesn't eat. Hardly at all! He won't try ANYTHING new and basically only eats yogurt, cheese, crackers, some fruit and some meats. That's it. 

Annnnnnd, the transition to big boy bed has sucked. It has completely sucked! 

He thought it was a great idea. He loved the idea of it really, but he also loved the fact that he could get out of bed, which sucked. For me. 
The lady who NEEDS at least 8 consecutive hours of sleep each night or I cry. 
I do. I seriously cry. 
A lot.
He's pretending to be "sleeping" in this picture after I busted him.

We tried everything. We literally had to trap him in his room! We had to tape all of the door covers (you know, those covers that kids aren't supposed to be able to open - the plastic covers on the door knobs? Well, he can open them.) We had to remove all of his furniture. No more toys or rocking horse made by Poppa Fishing or comfy rocking chair to snuggle in because he would move everything and do this:
The funny thing is, I knew when he was up and around because he'd talk to himself the entire time. I'd stand outside his door and hear him say, "walking feet, Jayce! Up! Up! Up!" and I'd know he was climbing on that d*#n dresser again! So, I'd bust him and toss lovingly put him back to bed.

Sometimes he'd take all of his clothes off and put knew clothes on. Scattering the uninteresting choices around the room.

Then, he would decide he was done with his nap, so he'd knock on the door and say, "Knock. Knock. Knock. All done, Mom. Mom! Mooom! MOOOOOOOOOM!!!!"

Then, sometimes, after a couple of hours, he'd fall asleep.

This was every day. For 2 straight months. Nap time and bedtime.

So, then I did this.
Toddler bed, sort of. Really it's just a crib he can't jump out of! I might have to keep him here until he's 12.

In other news...

He does this:
He climbs everything. 
Wil NEVER did stuff like this.
I didn't know what "baby proofing" was until I had Jayce.
Seriously?

Monday, November 10, 2014

You... Again.

So, I started writing you a letter tonight. It was important to me. You see, I've been thinking about you a lot lately and when that happens, I just have to write you a letter. Not for now, but for someday, when you're big. I write so that someday you can read it. It was fabulous. I told you everything I've been feeling and thinking. There were pictures too. I posted it to this here blog. Then I tried to make some changes... When I write, I blab on and on and there are inevitably typos. I fixed it and published it again, but it was gone. GONE! My letter was gone! Well, then I cried. For one entire hour (I get that way). And then I searched every forum I could find on how to retrieve that lost letter. Nothing.


So... Three hours later. I will write to you again. Because I have to. Hopefully, this letter will be just as good as the first. Just as good as that one that's out there in computer cyberspace. Because, I've been thinking of you...

It seems like time is just flying by and that you're getting so old. I could get emotional just thinking about how much you've changed in the last couple of years. 


You are 4. 
I love 4. 
And 4 looks good on you. 

You're excited to play and learn new things. You love to talk about EVERYTHING. You know a lot about animals and trucks and dinosaurs. You also taught me about condensation the other day. You watch a lot of PBS Kids, apparently. But, you know what? I don't really mind. 


You love to hang out with your Dad. He is still the coolest, strongest, smartest person you know. You light up when he enters a room and you love to spend time with him, just the two of you. He teaches you things like: how to change the oil in a car (sort of), how to play baseball, how to catch frogs, and how to start a campfire. I can tell that he is really enjoying this older version of you too. He loves that you love everything he does. He loves to ride four wheelers with you and take you places. He loves to talk about diesel motors and other truck stuff. You are two peas in a pod, that's for sure.




















It's also been fun to see how you're changing around others. You love to play and include others, but I often notice you chasing an unfamiliar group of kids around just hoping that one of them will invite you along. You're also quite the jokester. You like to make people laugh. You love to be goofy and silly (this could be bad for you when you get to school) and you love to learn, well, mostly you love to play, which I hope will someday result in a joy of learning and doing. 

You started 4K this Fall. You love it! Every day you talk about the friends you play with (I'm surprised with the amount of ladies in your life ~ Clara and Amelia are talked about on a daily basis) and the projects you "forget to do" because you're too busy playing cars with Kolby and Carter (your two buddies). You've been absolutely amazing during this transition for me "back to work"... as part-time as it has been. You're always ready to head to school in the morning, never fuss about the random modes of transportation you take to get there (thank GOD for fabulous neighbor friends who pick you up each morning), and you never complain that you're ALWAYS the last one to be picked up. I'm lucky that you've been so easy-going lately, perhaps it's because you're four! At least, that's what you tell me when I praise you up and down, over and over again, for being so awesome... "Mom. It's betuz I'm foe", you say.

Yes, my friend. You are four and you are awesome. But.... there's always a "but", isn't there!?! I still worry. I worry about so many things. I guess that's what us Moms do. We worry. Grandma tells me over and over again that parents live on guilt. We live on the fact that we are certain we are doing everything we possibly can, WRONG. 

Somedays I look at you and wonder... Are you getting enough? Do you know how special you are? I wonder this a lot. Sometimes I wonder this when you're acting like a total maniac (crying, throwing a gigantic "drama-queen" fit). Other times I worry about this when you're quiet. When you sit back and watch, trying not to interrupt or not to bother anyone. I worry that you're so aggressive and rough. Why must you drive a truck into the side of a couch over and over again as opposed to simply driving it in a circle? Why must you tackle your friends while playing Power Rangers at school (while everyone else simply runs around)? Oh boy... Do I worry?!?! I also worry when you are that kid who would do ANYTHING possible for a little attention (from anyone). I worry. All. The. Time.

I'm sure this "worry" is normal. Typical for ALL moms. Typical for those moms who have more than one child. And especially typical for those moms who have one child with special needs. I hate to say that I worry because of your brother, but I do. You see, he just needs us so much. You need us too, but he needs us "differently" and I'll never know how that has or has not effected you. 

It's interesting how us Moms worry so differently about each of our children. I worry about Jayce ~ physically. Will he feel bad that he can't play sports like other kids can? Will he struggle with school because of his hearing loss? Will people pick on him because he looks and plays differently? I worry about these things, but I really don't worry about him emotionally. He's such an easy-going guy. He rarely gets frustrated, even if his legs don't work so good. He never feels left out (that I can tell). He never acts out to get attention, probably because he is always the center of attention... wherever he goes. 

I rarely worry about those "obvious" things with you. Most things come fairly easy for you. You try a new sport, you love it and excel. You make friends and love them all, instantly (although we have DAILY discussions about how "nobody likes a mean guy who shoves and tackles"), but you enjoy everyone and rarely feel left out. 

The things I worry about for you are those things that I can't see ~ your feelings and what that does to your behavior. You see, you're a lot like me... You're extremely emotional, but you struggle with managing those emotions. If you're feeling sad or lonely or neglected, you act out by being angry or easily frustrated or just down right mean. If you feel embarrassed, you yell at everyone in sight and then you hide. If you feel pressured, you completely shut down and will not try again. A lot of these behaviors are just YOU. It's just how you are, but there's this part of me that wonders... Would you be different if I was able to focus more on you? Have I failed you because my life (and subsequently your life) for 2 entire years was just surviving (emotionally) and taking care of Jayce (physically)?

I've had this conversation and asked that question time and time again, but, to only one person because I know she will never answer me, "Yes. You've failed." She only tells me, "No. Of course not". She tells me this because she knows it's true for herself too.

So, here's what...I have a son with special needs. He is deaf and has Cerebral Palsy. You have a brother with special needs. He is deaf and has Cerebral Palsy. In many ways, this fact has made me (and probably you) a much stronger, compassionate, "live life to the fullest" and "remember each day is a blessing" kind of person. 

You are proud of your brother when he does something new. You can answer any stranger on the street who asks about Jayce's Cochlear Implant ~ you tell them his ear doesn't work and that it helps him hear. You answer questions from kids about Jayce's legs and his walker. You understand that some kids are born with problems with their brains and that this means that they may move or act differently than yourself. You accept this fact wholeheartedly with not one second of insecurity or fear. You are full to the brim of acceptance and you respect differences in others. This makes my heart burst with joy and happiness and pride. 

But, (there it is again) I'm sure there is and always will be a part of you that hates this. A part of you that hates that your brother is different... That your brother needs more and is noticed more. 

I want you to know... From the bottom of my heart... I get it. I totally get it and it's ok. There will be times when you want to run away from the attention that follows your brother. When you don't want to help him stand or walk. When you don't want to tell people why he looks the way he looks or acts the way he acts. Please, please know... I get that and it is OK!



We are all just doing the best we can and sometimes we all need a break. I am here to tell you that I will try with all of my heart to give you a break (and I hope I can do the same for myself... we are a lot alike, remember:)


I guess, at the end of the day, all I want you to know is that you are special and that you are loved. So, so loved. You are my first baby (I remind you all of the time). You are my first true, heart-aching, can't live without it, LOVE. And that, my boy, is the most specialist thing! I will love you for always and forever. As far away as the moon. I SEE you. I see you all day. Everyday. And I am so, so happy that God gave me you... First.

Until next time, Wilby....



Monday, April 28, 2014

Stop CMV

For the past 2 years, I've had the opportunity to connect with numerous cCMV mamas. We've shared our familys' stories, our heartaches, our fears, our setbacks, our triumphs and more with one another. I've found my relationships with these women so comforting, even though I have not met any of them in person. Although none of our stories are exactly the same, nor are our children, we have a strong bond simply because of Cytomegalovirus.

In addition to connecting with other Moms, I've been a google-nut (aren't we all?) and have found many websites about congenital CMV. Most of them are research-based. You know the ones. Big words, case studies, the works. And although I can hold my own these days when it comes to medical verbiage... (I know all about hyperimmune globulin treatments, symptomatic versus "silent" infections, and a possible CMV vaccine. I even know about HB00811 (Utah), which is the first legislative public health initiative in the U.S. mandating CMV education for women and CMV screenings for children who fail their newborn hearing tests) ... I want to learn more.

I want to educate women about a virus that is quite common, but one that most women have never heard of. I want everyone to know what I didn't, that although cCMV only occurs in about 1 in 150 births, it is still the most common reason for birth defects and developmental disabilities in children. It is more common that Down Syndrome, Spina Bifida, Fetal Alcohol Syndrome and pediatric HIV/AIDS.

So, when I found the website, www.stopcmv.org, I knew I was in the right place. And here's why...

Stop CMV was started by a regular Mama, just like me. She is the mother of twin daughters, both of whom were infected with CMV in utero. Through this organization, she's been able to share her story (and others'), connect families, raise funds for CMV research, and most importantly educate people (including doctors!) about a virus that needs to be talked about.

On her website, there is a section entitled "Share Your Story". Well, I've wanted to for some time now, but I just never felt like I had it in me. I wasn't ready, ya know. Until now...



I created this video that may or may not be shared on the website, but one that I hope is able to reach just one mom-to-be. Only one.

I hope she sees our video and talks to her doctor. To a doctor who will probably tell her to not be worried. Who will tell her that contracting CMV while pregnant and then passing it on to her baby is rare (it is NOT). Who will look at her skeptically because the doctor herself doesn't know much about the virus.

I want this Mama to feel empowered. Full of knowledge. Strong. I want her to request a blood test, which will reveal whether or not she has had CMV in her life and whether or not she needs to be extra careful during her pregnancy.

You see, CMV IS preventable. It is passed from person to person like any other flu or cold virus ~ through bodily fluids like saliva, urine and tears. If you have toddler at home while you're pregnant, like I did, the chances of you dealing with these "bodily fluids" on a daily basis are quite high. So, all you have to do is be vigilant ~ don't share eating utensils or straws, avoid kisses on the mouth, wash your hands, and so on.

If the blood test reveals CMV antibodies (meaning, she's already had the virus), that mommy-to-be will probably not have to worry about the virus harming her baby. If she does have a recurrent infection while pregnant, those antibodies will fight off the virus BEFORE it passes the placenta and reaches her unborn child.

Women need to know their CMV status before they become pregnant.

I guess this has become a passion for me, and not because it was some fluke or some random problem I encountered during my pregnancy that resulted in Jayce's hearing loss and Cerebral Palsy. No. It was totally preventable, but something I knew nothing about (and believe me, I knew all about being pregnant because like most Mamas, I read about it). This is just not ok.

I want ALL women to know about CMV and the affects it can have on their unborn child. When we know better, we do better. That's what Oprah says, after all. And when Mamas unite, amazing things can be done! A vaccine is in the works, people (click the link below!). It may happen. A vaccine that could literally eradicate the birth defects caused by this virus in general.
http://www.ucdmc.ucdavis.edu/publish/news/newsroom/8209 



Please, take the time to learn more! Visit these websites too:
http://www.cmvfoundation.org
http://www.cdc.gov/CMV/index.html


Wednesday, April 23, 2014

Double Birthday Bash!

My boys are 4 and 2... FOUR AND TWO!! I cannot believe this. Where did the time go? I look back at pictures of the months shortly after we brought Jayce home and I hardly recognize that 2 year old Wil staring back at me.

Anyways, we've already been down memory lane where I've bombarded everyone with sappy posts ~ back to birthdays!

Having 2 children only 23 months apart is difficult for a variety of reasons that I'm sure you can imagine. It's also trick come birthday time because Jayce's birthday is February 23 and then some 25 days later, we're celebrating again for Wil. I decided this year to have a joint party because, let's face it, I may not have many more years to pull that off.  AND because I really only wanted to clean my house and make food for one event!!

We kept the theme simple and full of color ~ red, yellow and blue. And, per usual, there were trucks. Lots of trucks; that is what Wil digs and so Jayce does too!


 

 There were presents galore, of course. And the best family 2 little boys could ever dream of.











They. Are. Spoiled.







And afterwards... We were tired!



Happy Birthday to my sweet boys.
I hope you both know just how much you are loved...

Tuesday, April 1, 2014

Brothers At the Zoo

Wil thinks he's the size of a gorilla. 
Jayce wants to go "over there", I guess.
Learning all about monkeys. Jayce's favorite zoo animal!
Wil taught us that monkeys don't live in North America, unless they're at the zoo.
Apparently he learned that on Wild Kratts
God bless, PBS and its morning programming. 
My child is learning while watching television!!
What? Is that bad? 

He wishes he was taller...

here too.

Monday, March 31, 2014

2 Years...

My sweet Jay-Bird,

You are officially two years old. TWO!
Before I get all nostalgic on us and trudge back down memory lane, let me begin by telling you all about YOU! Did you know you are amazing? Like, seriously, AMAZING! You have the greatest personality. You are always so happy and splendid. Really. Nearly every second of every day, you are happy and calm. You are much more like your father than you are like me. You don't like to be the life of the party. You don't talk much, unless you've got something you have to say, you're quiet around strangers, and you're mellow. A mellow-fellow....

Unless your brother makes you mad, then you've been known to chuck a car at his face, or bite, or scream at the top of your lungs, or bang your face on the ground. Literally. But, like your father, this rampage only lasts a few seconds and then you're cool again. You like meeting new people (although you have a tendency to pick your nose if you're feeling shy), smiling at everyone you see (particularly if you're using your walker, which turns you into the king of the world) and going places, which for you usually means to therapy or to the doctor, but you know what, you don't even mind that! Seriously. You are just... easy. This is a much needed change from your infancy because back then... you were not. Easy, that is.
We took you to the doctor last Friday for your 2 year old check up. You weigh 27 pounds, which is a bit small for the average 2 year old, but we expected as much. Your hair grows like crazy, which means more frequent haircuts compared to your brother (who was bald up until about a year ago). You love to take baths and play outside.You love playing with your big brother ~ anything he does, you want to do too ~ monster trucks, dinosaurs, and blocks! You also love playing the I-Pad, but not those fabulous, language enhancing apps I've so diligently researched and downloaded for money. Nope, you prefer Mickey Mouse or Curious George episodes (you call them "icky" and "ooh-ooh-ohh-aahh-aahh-aahh", which you learned from your friend Beckett). We've started to enforce the "First, Then" method with you so that I know "First" Mommy chooses the app/learning game, "Then" you choose. Not so fun, I know, but I'm the Mom.
You love cheese and yogurt and any piece of fruit you can get your hands on! That is it, though. You are a picky eater, I tell ya! Really picky! You also love to have a cup nearby to have a little somethin', somethin' to drink. Your latest obsessions are "oooossss" and "waaaa" (juice and water, which you say with a simultaneous sign). Speaking of sign language, you LOVE it! We don't sign much with you (your therapy is primarily auditory-verbal, which means we want you listening and speaking to communicate), but you love to watch your speech therapist from Birth to Three sign for you. Every week, we learn a few more "functional signs" to add to our ever-growing list. This week you learned "upside-down!" and it's a mighty fun sign. Now your trucks always end up "upside-down!" And that, my friend, is FUNNY! (You think).
You are just the coolest kid. I never have to worry about "will Jayce freak out here?" or "Jayce really needs a nap, we can't do this or that". Nope. Not you. You're just so easy-peasy and go-with-the-flow. I hope you always stay this way.
Nothing really phases you, which is so interesting to me because things are extra hard for you. Very basic things that come easily to other kids like listening or talking or walking (any kind of movement really, even sitting) are very, very challenging for you. Your body doesn't "just do" these things. You have to teach your brain how. You have to concentrate extra hard. You have to see specialists who work your body and your brain to do normal, human functions. It's exhausting to think about and imagine, so it's so surprising to me that you've got such a calm demeanor. Sure, you get frustrated at times, like if your brother's outside, but you can't go because you really shouldn't crawl around in the rain and cold and mud, but you shake it off rather quickly.

You have to endure so much. More than you should. Most toddlers spend time at the library or at the park, but you spend your time at therapy. Twice a week, at least. I didn't really realize how intense this past year was until I started looking at my calendar to see if we could "claim" our mileage from your appointments on our taxes (we can't). You had exactly 117 appointments in 2013. 117... Multiple visits for Physical Therapy, Speech Therapy, Audiology, Urology, ENT, Botox Injections (4 times), Orthotics, Neuro-Suregery, Waisman Center follow-ups with an Occupational Therapist, a Nutritionist, a Social Worker, a Psychologist and a Developmental Pediatrician and of course Birth to Three, who actually comes to our home, thank GOD! And honestly, after all of that, you hardly cried or complained (ok, except for during Botox injections because those flippin' hurt and during PT because Jim makes you walk and that makes you mad).
I realized something else while looking through my calendar that day. I was right there with you. Me. Every single time. You see, it really is me and you against the world. Sure, we have our support, but at the end of the day, it's just you and me. At first, I was resentful of that. As time with you went on, people seemed to go on with their lives (as they should, of course). People didn't check in as much. They didn't ask questions or notice how much progress you were making. I felt so alone. I felt like WE were so alone and I didn't want us to be alone. I just didn't think I was strong enough for us to do this alone. But, I am. We are! And, I'm learning that it's just the way it has to be. I'm sure there are many other Mamas of special needs kids out there who can totally relate. We do all of this because we have to, because it works, because you're worth it, AND because your Daddy is the hardest worker on the planet, which enables us to do it! You never stop fighting, so neither do I. It's the least I can do for you.

This past year has definitely been the busiest one yet, but it has also been the most rewarding. The first year of your life was really a blur. The uncertainty that was your future was completely paralyzing for me. I was so scared, all of the time. It wasn't until your first birthday (the night before your cochlear implant surgery, actually) that I realized that you were mine and that you were going to make it... that we were going to make it.

 And we are.

You are making such huge progress! It's impossible to even put it into words. You have a new Speech Therapist who you've been working with since mid-January. She's totally impressed by you and your progress! It's taken some time for you to warm up and 'perform' for her, but you're doing great now. She also gives us "homework", which is helpful for the teacher in me. It's weird, even after looking at that calendar a few weeks back, there's always this part of me that thinks I should be doing more. More therapy. More work at home. More playdates with peers in a language-rich environment. More! More! More! But, when I feel like I/we should be doing more, I remind myself of how far you've come (and that you're ONLY 2 for crying out loud) and that there just isn't enough time in the day or in our family's schedule for more, and that sometimes, I just need to let you BE. And so I do. And that, little buddy, is so special. These are the moments I cherish for you...
Right now, you have speech 1-2 times per week and I think that's enough, however, I am excited for next fall because we're enrolling you in the UW's Center for Communicative Disorders "Story Hour" program! It's a preschool program for children with language delays that meets two days per week. Each preschooler is paired with a Graduate Student (a speech pathologist, for example) who shadows the child and develops communication goals for him. It'll be a great way for you to begin a preschool program while simultaneously working on intensive speech and language skills. Yeah! Now, let's just cross our fingers that you get in... I've only called the Center four times and sent 3 emails reminding them to pick you! Yes. I am THAT mom. Sorry.

Here you are 7 months after having your ear "turned on". Every 6 months, you meet with your audiologist who checks the programming on your implant and tests your hearing in a sound booth. When you were first tested (without an implant) you responded to nothing, obviously. Booth testing involves your audiologist sitting in front of you (distracting you) while another audiologists checks your hearing of different pitches, tones and frequencies (I think, basically). This was the first booth testing that also involved speech, which you responded to immediately. You'll notice as this video goes on, the sound of the audiologist's voice gets softer and softer. When you hear the sound, you look to it, which is a speaker placed in the corner of the room. If you respond correctly, the speaker lights up! Very cause and effect, conditioned responses. Somewhat Pavlovian in nature, but you love that speaker when it lights up, so apparently that rewarded behavior works just fine for you!
I cannot express to you how amazing your speech progress has been. I stopped counting and writing down your words when you hit 50 a couple of months ago. 50 words! You're combining words and you have intonation when you ramble and you answer your own questions ~ all of this is huge!! Your favorite word is Mom or Mommeeeee, which you say all day long while searching for me. It's like music to my ears! You also love to put your hands by your mouth and yell, "Wuh", which means Wil. You often yell, "Wuh. Stop! No!" at your brother too. It's so annoying to him because he's usually not doing anything wrong, but I secretly LOVE IT!!! Keep up the good work!!!


And your Physical Therapy (our nemeses)... Well, take a look at this, Mister! You took your first steps last Monday, March 17!!

When you were 9 months old, your therapist, Jim, told me that you would walk. I will never forget that day. It was huge because until then, no one was sure. You do have Cerebral Palsy, after all. Not to mention hearing loss, which can have some effect on your balance and coordination. 

Now, hearing those words, "he will walk" was something, but months went on. And then an entire year, and still nothing. You weren't even close. 

And as the time went on, that doubt and fear for the future started to creep back in for me. I knew in the back of my head that being 2 and not being able to walk was huge. Huge, as in NOT GOOD. The old me started to reappear. I became obsessed with figuring out WHY you weren't walking and WHAT we could do about it. But every doctor or therapist we saw kept telling me to give you time and that using a walker for a few years wasn't the worst thing that could happen. 

So, I stepped back. Took some deep breaths and tried to let go. And just as I started to let go, you took your first steps. Jim and I both teared up and I hugged you and praised you up and down. That was two weeks ago. Are you running all over this house? No. Of course not. Will you be in 2 weeks? 2 months? 2 years? I have NO IDEA. But right now, today, I believe that you will... someday. I am so proud of you, Birdie!
Obviously your hearing loss and Cerebral Palsy are the BIG items on our list to focus on, but we've also spent the last few weeks following up with all of your specialists. Apparently you do that every 6 months (or so has been the case for you). 

We met with Dr. Heatley who checked your cochlear implant and ear tubes: looking good!

We met with Dr. Iskandar who looked over your latest CT: No late-onset hydrocephalus, ventricles look good, schedule a follow-up CT and visit around age 3.

We met with Dr. McLeish who relieved some of the spasticity in your legs with Botox injections and recommended Hippotherapy (horseback riding to strengthen your core and improve your balance and coordination ~ we'll see where we can come up with the money for that... you know we WILL:)

We met with good ol' Scott at Middleton Rehab who's making you a new pair of Sure Step foot orthotics.

You were officially evaluated by The Katie Beckett Program to see if our family would qualify for medical assistance for those things not covered by private insurance. We got a big, fat DENIAL letter in the mail, which is GREAT news for you because you're doing so amazingly well, but not so great for your Dad and I when paying for this and that, but we'll make do. PS ~ Did you know there are many, many grants out there for children with special needs?!?! There are! I've started to apply for you! I've got your back, baby!

And last, but surely not least, we'll meet with Wendy, your audiologist, in April, to check the programming on your implant and for more sound booth testing to make sure every things in tip-top shape in the hearing department.

Also, can I just say something? I just wrote all that and it was totally fine. Like, no biggie. Just regular ol' life going on around here. That's weird for me! Are you rubbing off on me a bit? Making me all cool and calm and collected? If so, keep up the good work!
So, that's it. You are 2 and I can't believe it. You are my special, loving, sweet little (mama's) boy who I am so lucky to have. You have my heart and their is nothing in this world I wouldn't do for you. 


Until next time...