Sitting Up Tall!

Not only is he sitting up nice and tall, but he's also using both arms to play with a toy!

Love this view of his features



And right now, this is my hands-down favorite photo...such joy! I can still hear his gleeful laughter as he flings Woody around by his ankle ~ and I know Woody feels extremely loved!
Please just focus on the baby...if I'd known he was going to do something cute, I would have put some effort into his surroundings!

They're Up To No Good

Mother's Day including some new skills, thanks to The Dear Daddy









I wish I'd gotten a picture of the triumphant grin Jack was wearing when he finally scaled the steps to land safely on the couch...
...but he knew where the "big kid" toys were and made a bee-line for them!

Post Script: Sorry for the poor picture quality. On the next trip 'up the steps' Jack only needed help with the first knee up...after that he scrambled to the top lickety split to get those toys at the top!

Happy Mother's Day

My Mother's Day this year started off with this!It's everywhere!

Yes, that's poop in his hair. Green poop, no less!But the rest of the day was terrific! And seriously, just look how tall he's sitting up!

Biter Biscuits!

He's finally able to bite off chunks and chew them up - and he LIKES it!

Sitting Tall!

Crouching Dog...

...or bruised lip?Sorry...that's the only yoga term I know!

"My Happy Place" (Katee's Story)

I am the nurse, Katee, that Tracy spoke so kindly of in the post entitled, "She's A Keeper." I was flattered by Tracy's remarks and appreciative of the opportunity to discuss my previous encounters with other Down's Syndrome children and their families. It has been refreshing to be in Tracy's home, entrusted with her precious Little Stinkerie, while she is working, and see a family truly embrace the gift that Willie is. My story begins a year ago, when I was placed in a 7,000 square foot home in a ritzy gated community, in the Santa Clarita Valley. My patient was a 3 year old twin diagnosed with DS. I was excited to work with her but quickly my excitement turned into anger and resentment. The family was using me to disclude their child from family outings, because according to them a child with DS can't appreciate Disneyland or trips to the zoo, beach, etc. This family was fortunate to have money at their disposal, mom was afforded the privilege of being a stay at home mom and chose to only play mom to her two "normal" (her words, not mine) children. My heart was conflicted. I felt like this child needed me. Because unlike her family I enjoyed outings to the park or mall. I proudly introduced her to friendly passersby. Eventually, her mom got rid of me, presumably because our relationship became so intense and our views were worlds apart.

My next client was unfortunately much of the same, but with an added twist. I was instructed to keep this beautiful child in her 10 x 10 foot room. She was approved for much needed therapies that she never attended because mom wouldn't make the 10 minute drive to the clinic. I did my best to teach her fine motor skills, teach her to walk, etc but I was frequently instructed to stop and turn the TV on for her instead. I did my best to educate the parents as to her capabilities and encouraged them to set goals and assist in her journey to achieve them only to be met with resistance and then later get blamed for her delays. It is said that opportunity knocks but for me it rang...

And brought me to Willie......

Here I am now, in my happy place as Willie's nurse. I am a part of a team working to make Willie the best little person he can be. I no longer dread going to work, but embrace every new day, every sign of progression and every kind word of appreciation. More than anything I am grateful for all of my experiences, good and bad, with these amazing kids. Each and every one of my patients will always be in my heart. (And hopefully I'll be in theirs)


Posted by Katee, Nurse Extraordinaire!
Thank you, Katee, for baring your heart to us.

Happy ALL The Time...

...just ask him!

Keeping The Pearlies White!

Whoaaaaa!

He's cruising! I saw it with my own eyes tonight! Every one else has seen him do it...and now I have too! Yeah, Willie!

Stinkin' Cute!

She's A Keeper!

So when I get home tonight, Katee, our nurse, asked me if I'd gotten Will's sedated ABR appointment yet. I tell her no and remind her that the audiologist said it would take 4-6weeks before we get our appointment notice in the mail. So she asks, if tubes are recommended, would I get them put in. I said yes, that it was extremely important that he be able to hear well in order to speak well, and then I mimicked someone who cannot hear or speak well. I said If he can't even say his name clearly, who is ever going to want to promote him any higher than the grocery bagger* or the cart boy* using the jerky rapid cadence and softened consonants of our older disabled citizens who did not have the benefit of early intervention and speech therapy. And her eyes welled up and spilled over. She was stricken. She said it really hurt her that society does not realize the value of children with Down syndrome. That it angered her that so many wonderful people were denied opportunity without ever being offered the chance to try. That she would love to parent a child with Down syndrome. She's certainly a keeper.

Katee's story is not for me to tell. I will invite her to my blog to tell it in her own words if she would like. What I can tell you is that her experience in being Willie's nurse is different than with her previous two charges with Down syndrome. Different in that Willie has full run of the house and does not spend his entire day and night in his bedroom. Different in that Willie's family celebrates him and marvels at his being. Different in that Willie is given every opportunity for therapy, to learn, to grow, to be. Different in that Willie will grow up with expectations placed on him. To go to school. To attend college if he chooses. To get a job. To marry if someone steals his heart. To live as independently as he is capable of. To be a productive adult. To be happy. To make his own choices. To live. Katee is a woman half my age. Her other two charges were not in years gone by, back in the dark ages when parents hid their imperfect children away. Nope. These are very recent events. As recent as this past March. Modern day children in modern day families. Secluded in their rooms. Not provided with therapies. Fed, clothed and sheltered, but hidden. Denied. I understand her tears, and I hurt for her having seen those things, but I thank my God in Heaven every day that she's come to us.


*There is certainly nothing wrong in being a cart boy or a grocery bagger, but while the stars are ours to reach for, I will hold Willie as high as possible to reach for whatever his heart desires.

Weight...

We've been stuffing The Jax-Snack full of every high calorie, high fat item we can think of. When I say we, I mean his nurse Katee and I. He gets egg yolks and avocado for two of four spoon fed meals a day, yams loaded with full fat butter, egg yolks with hollandaise sauce, almond meal mixed with coconut milk yogurt, egg yolks with butter, flax seed oil in everything it can be disguised with, oatmeal with butter and local honey, some variety of yogurt with every meal...you name it, we've tried it. Tonight for Easter dinner he had mashed potatoes loaded with butter, just a bit of gravy, stuffing loaded with butter and at least a half cup of sweet baked beans. He really enjoyed the baked beans and I think the best part was sitting up at the table with the whole family for dinner! I toyed with the idea of grinding up some ham too, but he spit out every tiny piece that I tried to slip into another bite of food. For all of this effort, we've gotten tons and tons of dirty diapers. Last week he weighed 20.02 pounds. This week he weighed 20.04. I guess we're attacking this weight loss issue by gaining 1/3rd ounce at a time. At least he seems to be genuinely enjoying the new variety of foods in his diet! Please, do add any high fat, high calorie ideas you may have!

And I promise to post Easter pictures soon!

New Pictures

I've gone back as far as April 1st to post pictures...just scroll thru my mindless rantings until you hit pictures!

This Little Allstar...

...spent the entire night last night in his own bed, in his own room! He greeted me in the morning bopping up and down doing standing practice at the crib rail! And this afternoon, he took a nice long nap in his own bed, in his own room!

Scratching, Pinching & Biting, Oh Dear!

Clearly, we need some help. Okay...I need the help, because as both of Jack's nurses assure me, this neck pinching, hair pulling, ear scratching, jawline/chin biting and digging of his pointy little chin into the soft flashy part of one's face? Reserved for me alone. When I scoop Jack up out of bed in the morning to a lesser degree, or when I come home from work to a much a greater exponential degree, his little face lights up, his grin spreads across his face and his arms scoop around my neck while he burrows into me. And seconds later one hand is pinching my neck, trying to gain leverage to climb higher in my arms, and the other hand and often both are grabbing fistfuls of the finer hairs at the back of my head to pull himself higher, the pain of which is only matched by his forceful grinding of his chin into my cheeks. All the while he makes a breathy and excited "Ooooooh, oooooh, ooooooh!" sound. Yes, he clearly loves me to pieces. Yes, he misses me while he sleeps or when I'm gone. Yes, he very clearly is happy to see me and knows who I am. But it hurts. It hurts bad. I see stars. I used to be able to extricate myself fairly quickly. Lately though, more often than not, I need help! I can only grab one hand and keep from dropping him...or more likely, suspending him like a pendulum from my scalp and flesh! By the time I wrangle one hand free, I can hear the hairs tangled in his other hand popping from my scalp by their roots on their way to the floor. When I try to free that hand from my recently cropped mane, the first hand either grabs neck skin or another batch of hair! By this time Jack is singing out a chorus of "Eeeeeee! Eeeeee! Eeeee!" and exuberantly bouncing up and down in my now tenuous grip. This is about the time he sinks those little fang like bottom teeth into my jaw or chin. Those top teeth are real charmers, too! So please, help me out here! I've tried the disapproving scowl. He thinks it's funny. I've tried putting him down-he screams like his little heart is breaking into pieces. I've tried - yes I admit it - slapping his hand when he does this at nap time. That just ticks him off. I've done the nice, soft, gentle mantra for so long it isn't funny. By the way, he gets nice, soft and gentle for about ten seconds then his little eyes gleam and he digs into whatever flesh is handy with redoubled efforts. Help me. Please. I adore that he's so happy to me, but it's becoming a very painful and worry fraught event to come home! COMMENT, Please!

A Shiney New Wrench

Took Willie for a more advanced hearing test yesterday. The verdict? Moderate bilateral middle ear hearing loss. Dang it! I thought he might have some mild hearing loss in the left ear. I also thought it might be his tiny ear canals. Or wax. Or something. I didn't see this one coming. The very lovely audiologist (seriously, I loved her manner!) said he may hear better than he is able to indicate, but based on his behavioral responses, she's estimating his loss as moderate. Both sides. In the middle. Dang! I did not see this one spinning nor did I hear it's whir, feel it's wind...until it chunked Willie right in the head. I haven't had five minutes to even think about how I feel about it. Eventually I will cry. And then I will get over it. Because Willie will need someone to show him the way. And maybe I'll just cry now. Dang.

Brothers...

Playing With Sunshine

Jack has been so fascinated with this late afternoon ray of sunshine that appears on our kitchen floor every day. There was a rug there, which he pulled away after failed attempts to grab the light. You can see his elongated thumb and fingers as he waved his hand. Maybe he can get a better idea of how to grab it from this angle...

This seemed like the perfect plan until the slippery rug undermined his footing...

Okay...let's try this!

Jack found that even standing on his legs, that ray of sunshine just would not be picked up!

The 'Too

Here it is, almost finished, almost healed. I still have to get some work done on the faerie to bring the purple in a little further, and add pixie dust to her dandelion puff body!