Puree is a French word

Feeding our children is something we all take for granted. They sip or bite and swallow without much thought. But when you have a neuromuscular disorder, chewing and biting are an issue. Teaching a feeding technique that provides nutrition to our little boy friend has become an important goal for us. One of my dear Sagamore friends gave me a Target card for our African family so I went straight away to buy a  blender.

Momma N understood quickly how to puree a can of Chef Boyardee and there were lots of happy sounds from Little E as we fed him the orange mess.

The best part was he swallowed every bit. The hardest part was we still have to hold his jaw and it takes a while to get it all in. Little E is happy to have the attention, but on a busy morning, I expect he only will get half fed.
Also,  I had my best buddy, Will outside playing with the rest of the gang so we were undisturbed.
Once the kids came flyin' in for water, Momma N and I were covered in orange puree.
Picked up lots of Pediasure to supplement the calories and he does seem to be growing.
Everyone is consistently laughing more, which must be a sign from heaven that these guys are gonna make it.

Will doin his thing

Gotta hand it to Will, he knows how to make fast friends. He brought all the boys baseball caps and taught them how to putt golfballs in the greasy parking lot. He was able to keep his eye on baby C and 3 year old L while simultaneously doing several sports lessons at once. He truly is one of my best friends. I admire him so much. I guess he became a multi tasker by trying to keep up with his parents and sisters who never sleep and are maniacs most of the time.






Will is a 13 year old artist, film maker, musician, great friend and a wonderful son. When you meet him, he will tell you being a teenage boy is not so easy. The world has a lot of expectations and pressures. But when I watched him leading these children with compassion and care, I knew he was building confidence in a way no one can teach.

Helpers

Bea has gathered some of her friends (Molly and Caroline) to join us on our visits to our African families' apartment. They are very compassionate and spend their time focused on teaching and playing with the kids. Caroline's brother sent over some sports clothing for the gaggle of 9 year old boys that act as interpreters for me at times. Molly promises candy to the boys and they always hold her to it.

Slippery

READ TO ME

Molly teaches English

I had a special friend join me today. She is a kind, loving compassionate young woman who would like to be a physical therapist. She is at GSU studying biology and I met her at the children's hospital during her observation time. She is a natural caregiver and shows true potential in her ability to pick up information quickly and use it to help others.

Use your muscles little bunny

You make us lugh

Today we played with E and gave him some exercise time. We were able to show mom how to play with E on a ball to improve his strength. We all laughed and E started hopping forward like a little rabbit. He is so adorable. Bea played with little C on the couch until someone poured a coke on some other kids head. Thats when I sent all the big kids to play outside so we could get something done.

Lets play with Bea's old toys

Outside

No car seat and a mouthful of meat

When you work with refugee families , you set the bar at a different level. Not necessarily higher or lower. Just different. I would like to advocate for E's (will call little boy this name to protect his privacy) medical needs but because of HIPAA and other privacy acts, I am having a tough time finding out what doctors he actually sees. I did find out the name of his Pediatrician and obtained a release of information to take to his mom which she signed for me.
When I arrived at her apartment she was walking out the door carrying E with little C (his sister) running after her. He saw me and produced a giant grin allowing a huge bolus of meat to fall out of his mouth. So here is where I am trying to help. Now this may seem gross to you, but when you work with kids with neuromuscular impairments you learn that many have difficulty eating, which is the case with E. He holds onto food sometimes not able to completely chew it. He needs speech therapy and has had some test which showed that he indeed needs therapy but I do not know if he is getting it or who the therapist is. I alerted the refugee agency of my concerns and will continue to try to help by teaching some of the feeding techniques I know from my work.
The other thing that worried me today was that they were all piling in a small car with a friend to go to the bank and there was only one car seat and 3 small children. Oy. I can only imagine the scene at the bank when E allowed more meat to come oozing out of his mouth like a noodle making machine.
So now I am on the hunt for the car seats that they need, the doctors or clinics he attends and any other information that will help keep this family healthy and out of the emergency room.

One problems is..........emergency rooms don't take too kindly to kids being carried around without car seats and wads of unswallowed food in your kids mouth. You get the gist.