Blake....

I haven't written a blog in quite some time now...in fact I figured I was done with this blog. I didn't feel like I should continue writing about Blake after the first year. Someday he will read this and that worried me a bit. But so many of you have asked for an update and asked how he is doing and I feel I owe it to you all to keep you up on Blake's happenings. Going forward, I don't know how much I will share in this blog and what I will feel comfortable telling you all. But above all, it is important to me to love Blake first and keep his feelings in all oft his at the front of my heart and mind when I write.

On that note, I will let you know that Blake is doing very well. Life is not without its hurdles, but on the whole, Blake is an active, into everything, can't take my eyes off him for a minute toddler! And I am loving every minute of it.

Our initial goal was that Blake would crawl by December. Well, he has surprised his therapists and me by choosing to crawl just a short month after his first birthday. And it hasn't stopped there. He is now pulling up on things and crawling over everything in his path. I am fully convinced he will actually be walking by the time we have our next IFSP. It is exciting and challenging and I am so proud of him. Now on to protect our house and him from anything dangerous!

Blake had a visit at Children's hospital in August. Physically he is doing fantastic and has very little hypotonia or low muscle tone. I have always felt that. He was kicking in that first ultra sound and came out straining to move in every way he could! He is all boy and activity. Our struggles lie in the realm of eating as Blake refuses to make the transition to solid foods. It is hard sometimes, but the doctor says his growth chart is textbook and Blake is beating all the odds physically. So for now, to the chagrin of his therapists and me, he is bottle fed. Heaven help his teeth someday! But we are doing what we have to do to get the calories in that little guy. Actually, I should say "big" guy! He is almost 22 pounds now and in the 25th percentile on a typical growth chart! And still loves to be walked to sleep. I won't complain even when my arm is asleep - I love it and cherish every moment with him.

So here are some pictures and quick update on my little guy. Thanks to all of you who care and ask about us so often. And thanks for loving my sweet little boy. He now has a smile and a giggle that can just melt your heart.

Happy Birthday Mr. Blake!!!

I can't believe I am just getting to this post! But my baby is officially ONE! So hard to believe that first year is over. Blake is 18 and a half pounds now and 27 and a half inches long. He is a little squirming chunk and bundle of love. He lights up and laughs so easily. He laughs at things that he finds unusual and he laughs when other people are laughing. He is happy and constantly "talking" to us, the cat and anyone that will listen. I love his life and joy. I still vividly remember the doctor last year as Blake emitted his first cries, saying, "Happy Birthday, Mr. Blake!" I am so glad this little guy has graced our lives with his beautiful presence.

Blake is 11 months and now? The countdown to the big #ONE has begun!

Well, my little guy is almost a year old! How did that happen?? Time to plan the birthday party! Blake has had an amazing month - things just seemed to click for him. He can push up now and is so close to being able to crawl! I am thrilled and terrified at the same time - there go my showers or getting any house work done whatsoever! But I am happy - so happy. Blake has a couple of words to his credit - Dada and Mama and he is starting to wave bye-bye and clap! He smiles in response so readily. It is so cute to watch him interact with us. He knows when Daddy tells him "I am proud of you, Blake" - Blake's whole face just lights up! It is precious to watch.



Blake had several doctor's appointments over the past month and has been deemed very healthy - no Hirschsprung's disease and his heart seems to be doing well. He had his first visit to Children's hospital because Blake has taken on a new hobby - he likes to pop his knees in and out of joint just for fun! And to drive Momma crazy! O my heavens! What to do with that boy!? The doctor's best advice - IGNORE IT! Which I am trying to do, with difficulty. Dan and I look at each other and mutter "Rice Crispie Time" every time he sets to doing that. The doctor said it isn't harmful but that it probably means Blake will walk a bit later since his joints are some of the loosest on record.


Well, the next time Blake has a birthday, it will be the big one! So amazing how fast this year has been. Blake is such a joy! I hope these pictures give you a little smile. He sure brings me plenty of those.



My little sleeping angel...so sweet.

My little earth angel...

I feel reminiscent tonight - I meant to do more of a recap close to Blake's birthday, but tonight, so many thoughts are going thru my head. I am not always as honest on this blog as I first was 10 months ago. So tonight, I am feeling honest. Don't feel like you have to read all of this, but for me, I started this blog to be a chronicle of my journey with Blake and Down's syndrome. So here it all is in a nutshell. Life has been such an up and down struggle over the past year. All in all, I love Blake to pieces! He couldn't be more perfect to me and I couldn't be more in love with him. He is my world and my joy. But there is the darker side of all this too. The questions and the worries that have flooded my heart and head in the past year have overwhelmed me too many times to count and I have cried a fair share of tears over it all.





When I first knew of Blake's Trisomy diagnosis, I didn't even know what that meant! I looked at that nurse in utter confusion - what the goodness is Trisomy?! "Down's sydrome? me? My child?" I didn't even read those chapters in my pregnancy books. I was in no way prepared for this. I had met one little Down's child about 15 years ago in a church group my parents were a part of. But beyond that, I knew nothing! Nothing...I knew I loved my sweet baby - I was never in doubt of that, but I didn't know what it meant. Was he incapable of anything or everything? Would he need lots of help? What level would his brain function at? Would he ever play soccer, or drive a car? Would he work or get married at some point?




Those first few months and even now, when people tell me what a beautiful baby I have, I find my thoughts wondering, "can they see the Downs? Is it obvious? Are they just being nice?" I find Blake so cute and beautiful but he is mine. Maybe other people see it and are quickly judging. Maybe they are whispering their real thoughts in their minds where I can't hear. Sometimes I look thru his pictures and the almond shaped eyes just jump out at me. Or I am holding his little hand and feel that semi-crease that is a hallmark of the diagnosis. It crosses my mind in some way shape or form every single day.




The months have taught me that he is more typical than not - he laughs when he is tickled. He cracks up at the silly things I do to make him laugh. He cries when he is taken away from a toy he was having fun with. He gets so excited when he sees Daddy! He smiles at a favorite toy and gets the most curious interested look when he sees a new toy. He has the wide range of emotions that anyone typical would have. That was my greatest fear, being a musician, that he wouldn't feel things or experience the world the way I can. I feel so deeply and play my heart and soul into my music. But I was afraid I had been given a child that couldn't comprehend love and fear and caring and hope. But I have already been taught that Blake feels so much and as the months go by, his personality and his laughs and his little sighs complete my heart.




But there are the things that make my heart cringe and worry. Blake is behind in mobility - he isn't even interested in standing. He fights me through every physical therapy session. I get so weary sometimes and just want to give up and let him discover it himself. But I want the best for him and so we persevere - he with his stubborn attitude and me with mine! But his heart is all there! He loves completely and already cares about the people in his life.


I think the other things that have been hard that are difficult for me to share are how many things Blake has to deal with that a typical kid doesn't. I am at once thankful for the therapists we have been provided with free of charge and also angry that I have to make my baby go through physical therapy and work so hard every week. He cries and screams and sometimes I just want to make them all leave and tell him just to find his way at his own pace. I had a week where I cancelled my appointments and Blake and I just took walks, and played with toys and read books and tried to live a normal life! One in which there was no therapy and no talk of Downs. But I know I want what's best for him and so they keep coming. I hate seeing his pain thru the extra doctors appointments - he was at the doctor almost every week this past winter for check-ups, evaluations or shots that other babies don't have to endure. In one particular instance, he needed a blood draw - the nurse stuck his left arm several times trying to find a vein. When she was unsuccessful, she pricked the other arm. And Blake is screaming the entire time while I am starting to tear up and hate this whole process. She then told me we would have to try again in 5 minutes. At that point, I grabbed my baby off the table and told her we would have to try another day. It took me so long to console my Blake and he still remembers that nurse and cries when he sees her. He is smart and it breaks my heart that his life is full of things that he must endure that other babies don't!




I don't want to complain - so many people have it so much harder. Blake didn't need massive surgery this year or tubes put in his ears. He didn't have a horrible time of it when he was first born or have to be placed in the NICU. He was lucky. I know those things - but I can only speak from my own heart and what I feel. And what I feel is that I wish that there was no Down's syndrome for my baby. Not because of how I feel, but because of how I care about him! I dread the day I will tell him he has Down's syndrome! How will I tell him? I think about that a lot! I don't know how to even start that discussion and I fear he will hear it from other children. It breaks my heart that he will know he is different. Will he accept himself? That is what I worry most. I can handle it! I have accepted this struggle on my end - but I can't accept it for him. I don't want him to realize he is different and will always be different even if he wears the right clothes or says the right things.




Well, thank you if you have stuck thru reading this entire blog post tonight. I just wanted to put a more honest moment out there and share what is in my heart. Above it all, I know I have been given a precious gift. His beautiful unearthly blue eyes that seem to glow from inside make me think that the heaven's given me an angel to keep. Maybe he was sent here to help me. I have had some tough stuff to deal with in my life and Blake lifts me up and gives me the biggest heart smile I have every felt! I love him so much.


I just want to give credit to my sweet sister in law for these amazing pics! Thank you so much! http://thalytaswansonphotography.com/

Happy 10 Months to My Sweet Blake

Wow, 10 months! Each month passes so fast and I can hardly believe it. Blake is sitting like a champ now - 10 minutes at a stretch without getting tired and he can reach for toys and is even starting to do a bit of sign here and there. I can't always understand it, but I am excited that communication is close. Over the last month, Blake has made huge jumps in development - he is not only bigger and stronger, but his mind seems to really be taking so much in - he can say Momma and Da-da now and even uses them when we are around which is starting to let me know that he does understand what he is saying. He only says Da-da after I use it or if he is actually playing with "Da-da" It has so warmed our hearts that he can say our names and pretty much said them within the same week.



Over all the development is just the overwhelming sense of what a blessing little Blake is - he has a warm heart - that is already evident and he is such a sweet heart. He now plants a kiss on my cheek when I get him up in the morning - that clumsy half open mouthed attempt just warms my heart.
Here are some pictures to show you all his new skills!



He can reach for a toy and pick it up and raise it while he is sitting! I had no idea what a big deal that was, but I am so happy he can do it.

He can drop a toy!

He can reach for toys while on his tummy and can eventually get to them by doing a little rolling pattern. He then rolls gracefully on to his back to either inspect the toy or gloat in his success. I love to watch him work this out.