One year of love!!

Where does the time go? In some ways it seems like the blink of an eye and in others an eternity. What a year it has been, and it is just the beginning! The transformation between then and now, not only for him but for us as a family, has been amazing to see. We have gone from a family of 7 plus 1, to a family of 8. From survival mode to living. It wasn't easy but oh has it been worth it!

When we got home, he could not hold up his head. He choked on even thick foods, and got so excited and frantic every time he saw food that we could hardly pry his mouth open (he clenches his jaw when he's excited) to put food in his mouth. His head would pull to one side with his tone if he was excited or upset. He could not bare the weight of his tiny body on his legs. He weighed 17lbs, and was 31.75" long (actually likely less as they had a hard time measuring him, and later measurements were closer to 31"). He took at least 1 two hour nap a day, sometimes 2. If you laid him on his back, his legs 'frogged' out instantly and he was unable to move them unless doing a wild flail to scoot across the floor. He cried silently and would turn blue any time he was jiggled or bounced even the slightest, or patted on the back to burp.

Now he can hold his head up about 50% of the time, he can drink juice from a sippy cup, and he opens his mouth all on his own. He licks suckers and popcicles. He LOVES to try new foods. He's learned to stand with support, can sit on my hip, and holds his face towards you when you feed him. He weighs 27lbs and is 35" tall, and only takes one short nap in the afternoon (sometimes). He can also extend his legs, and use his feet and legs to kick things on purpose (which he thinks is hilarious). He is getting better about reaching for things and manipulating toys. He can hold a sippy cup with help. If he cries, it's a full out cry that you can hear across the house, because he finally has enough strength in his diaphragm to force air to move that strongly. He no longer cries at being bounced and actually loves to 'ride the horsie' and be bounced on your knees. He has a pet chicken that he likes to pet because she's soft and fluffy. He loves watching fish. He has a crazy goofy sense of humor and will laugh at the most ridiculous things. He's extremely ticklish. All of his doctors and specialists adore him, as does his family.

He still has a lot of hurdles to overcome but we will be with him through it all. This year he gets a cochlear implant, as we have discovered that he is profoundly deaf. What windows that will open for him to develop even further! And he has started medication to help with his dystonia so that he can better control his body. He is a very hard worker at therapy and the sky is the limit for him. We are so blessed by this sweet boy. I cannot wait to see what the next year home holds.

 Here are some pictures from the last 6 months.

Cookies!! MMMMMmmm

Snoozin and looking adorable after therapy

Sporting some nifty AFOs

Killer pouty lip

Playing in the corn at the fair!

Strolling in the 4th of July Parade with 4H

First time sleeping in a tent

Adorable even in a gown while waiting for his sedated ABR

Straight legs!!!

Six months home!!!

We are a busy bunch but having a lot of fun.  Our little man is doing great! He's had 2 EEGs, an MRI, an ECHO, Xray of his hips, and all of them came out very good with no issues. His movement specialist is thrilled with his weight gain and according to her scale/chart he is around the 10th percentile. Not the official # though since his pediatrician has him weighed undressed, and not clothed like at the specialist. Great though as he has gained about 5lbs in the last 3 months, and almost 10lbs total! He starts PT tomorrow, OT and speech next week, and gets a couple other tests coming up (hearing, vision, and a swallow study). He's starting to engage more with us, plays more, and tries to express his wants. He lights up when he sees us and his siblings. He is a joy.

We celebrated his 3rd birthday recently. A few times actually! First with a yummy chocolate cupcake (mmmm frosting!!).

Then a few days later we had a yummy cake (no sprinkles, too hard to chew)!

 We have also gone shopping at the art store. Such a cute helper!!

And now that he has gotten up to a healthy weight for his height, he's starting to work on developing skills like holding his head up, chewing on things, and putting his hands in his mouth.

It's been wonderful to see all of his progress, but also heartbreaking.  Six months ago we met a lot of other children that we came to love. Children we knew we could not bring home even though one of the nannies begged us to. It broke my heart then, and now, it breaks my heart more. One of the children we met there, who shared a room with our boy, slept in the crib next to his, and had a family coming for him... he did not make it to feel their love. He was very sick when we met him, and I feared he would not make it through the winter. His breathing so labored, and his tiny malnourished body frozen by his medical condition. The staff did what they could, but it was not enough. The ability to care for such medical needs is just not available. Precious little "Royce" passed away in February.

Through a friend we learned that another in that same groupa, one that the nanny had begged us to take back with us to "Amerika" (but we were not able for a few reasons) has also taken a turn for the worse. His hydrocephalus was under control, but his shunt has failed. Please pray for this little one. A family we love very much is there and found him and is working to bring him home. He needs treatment desperately and it is not an option in his home country.

Please pray for Ukraine and it's independence from Russia, and for it's 'least of these', the orphans that need families to come forward.

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