So I do apologize for that.
He has surpassed our expectations, for sure.
But there have surely been difficulties as well.
He is crawling like CRA-CRA- CRAZY.
The boy knows how to get around.
He roams this place like his own little kingdom.
And he can get up on his knees to a standing position,but he does not travel like that (not his quickest).
He is getting in teeth!
He has one almost all the way in
Second one is coming
We did not really know if he would get them, and where he would get them.
But they are coming in on his bottom gum…front 2 bottom will be in full force soon;)
He is learning sign language!
His favorite is “thank you”
And he loves clapping his hands
He is still plugging his trach and making sounds
(because the trach comes out below his voice box, the air escapes before it passes thru the voicebox.
But, if he covers his trach opening, the air goes thru his voicebox and he makes some great sounds!
Because his palate is still open (cleft palate), the air comes out loosely and does not fully form words
He is learning to love his little brother
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He LOVES being outdoors
Bikes and strollers and on dad’s shoulders
I am convinced he thinks he drives the stroller.
It is pretty hysterical to watch
He has the best dimples in the world
They melt me
He has incredible core strength
I am kinda jealous actually…
The boy can pick up anything and everything
His little hands that are so different from ours, do not hold him back
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There are a few songs and sounds that can evoke
the MOST body shaking, dimple creating chuckle I have ever seen
And it is a beautiful beautiful thing
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He continues to love lights
And music
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He loves books…his favorite ones can stop him in his tracks and stop any tantrum
He loves being with other kids
Look at this photo from Hadassah’s bday
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| see his little hat on his little head amongst that group of kids…? i love it! |
He still plays peekaboo with his bib
(I have tried numerous times to upload a great video of him playing…but the internet is too weak)
He really knows how to make us laugh
He hugs and loves on us more and more
He LOVES intimacy and touch
He plays on his own quite well these days
He has 2 best friends: Soresh the rainbowed monkey (from Dana Senior) and Sweet Petunia, the owl/ooloo (hindi for owl) from our sweet blog reader/now dear friend, Michelle
He’s kinda like a superhero
There have been hard times, and he continues to fight a lot of things that I know are hard for him
His skin has been a struggle this winter with the cold
The dryness from the cold has made the trach more dry and trach breathing more difficult
Figuring out his dietary needs has also been a challenge
Lately, sleep has been really hard for him…he just wakes up after 4 hours and then takes about 2 hours again to fall asleep
For those who are curious:
We head to the US in late May/early June for his next set of surgeries
Mainly, that will be cleft palate, repeat eye surgery, and fitting for prosthetics
We will be at UNC Chapel Hill again for surgeries
A estimate, as of yesterday, for the cost of surgeries is $150,000
I know…I know…it took my breath away too.
And I am tempted to disbelieve it can happen
And I am tempted to forget who our Abba is
And I am tempted to not trust
But then I remember…this is my year of HABITual trust
So I must silence my trembling heart
And drop down on my trembling knees
And believe that He is capable
And He provides
And He is faithful
Do please continue to lift him up when you think of it
Our verse for Adam this year:
“But for you who fear my name, the sun of righteousness shall rise with healing in its wings. You shall go out leaping like calves from the stall.” from prophet micah
(great song by Welcome Wagon on this verse)
But For You Who Fear My Name
So I know there is much more I could say.
For now, this sums up a lot
Dear ones, he is an AMAzing kid
We are more amazed by him each and every day
To have been born on death’s doorstep…travel around the world twice, undergo 10 surgeries by 9 months of age, and still LAUGH and appreciate beauty and be such a joy…THAT is a miracle
We are so thankful for the beauty he brings our life
We are thankful for the refining our Abba has done in our hearts thru his life
We love him and cannot wait to see what each new moment with him brings
Praying, praying, praying! I may have missed this but are y'all raising money for the surgeries?
This is juch a precious story. Thank you Raj. We look forward to many more of your blogs. He is such an amazing little bou and you and Jessica are amazing parents. We are ALL so Blessed by YOU all. GOD will continue to bless you with all his favors. We will continue to pray for you and it will happen. Love from Jackie Walker and family
I have followed your blog a little, we have a child with DS and he has been on Medicaid since his birth because of his disability. Is he American? If so I think you should be able to file for medicaid. I could be completely wrong but if I am not it should would help you a lot! You can message me at Facebook Rachel Bishop Baxter or greenville, SC if you have a question.
Hearing about how well Adam is doing just makes my heart sing! I love talking with your mom about Adam and I'm hoping that your dad is going to enjoy his visit! I know Anna E. is getting excited about her trip, too. It's so sweet to see brothers getting to know each other. They look so precious! I am so grateful for all of your pictures. They make me feel like family 🙂
The new blog looks amazing! Thank you for the update.