Happy 2nd Birthday Luke

LUKE TURNS 2!

PARTY BEGINS-----BALLOONS FASCINATION

LOVING THE BALLOONS!

THE CAKE (by Mimi....my amazing grandmother!) picture below by "Ericka"....isn't that a great pic?

THE GIFTS-----ALL THE GIFTS! ONE SPOILED MISTER
THE CAKE EATING-----my Mimi made a little topper cake for Luke. It consisted of just icing..no real cake inside. Unfortunately...this is all you get. He didn't like it and just stared at the one little blob of icing on his finger. It was cute. But that's about it. Luke is a clean eater. :)


Mommy feeding me banana baby food and I liked it better than the icing. :)
PRESENTS! YEAH! TRUCKS, TENTS, BOOKS, MORE TRUCKS, DINOSAURS, SHIRTS,....and!!! A DVD PLAYER FOR THE CAR!!! WHOOOHOOOOOO! (personal gift from Lulu)

Happy 2nd my puppy love. We love you bubba chub. Momma and daddy love you. (and your entire family, friends, friends that could not come but would have come if they were invited, neighbors that would have come if they were invited...so many!)
You are loved honey. Thank you Lord for creating our little man. We are forever in love with this precious gift.

Food news...

Our dietitian Joe came by today and she weighed Luke, measured Luke and gave him an overall assessment on his food intake. Basically, last month she said "let's not increase his tube feeds....instead, let's replace the calories he needs with 2 jars of baby food a day". She said if we do that then I won't have to increase the formula tube feed therefore starting what we like to call "the tube weaning process". Is there such a thing SN momma's? Some of us are in slow motion on this thing and I'm just focusing on the excitement for today!

So...drum roll.....(bum, dum, bum, dumbumdum....)

Luke gained 1 lb this last month!! Meaning, with the 2 baby food jars a day...he's gaining and getting his calories! Our first official tube weaned month. WHoooohhooooooooo!!

And..the really amazing news is that he's loving banana's, peaches, chicken/apple, sweet potatoes, apricots, fruit berry, and many other variations of the fruit baby food.
His picky eating has completely taken a turn and now he's eating pretty much what we put in front of him. GLORY TO GOD! Can you just say that again with me? Glory to God!
He eats so well. The speech therapist came by today and was so impressed with his swallow. She said he's just eating normally. (wow....really? Normal?) Don't hear that much! We'll take it. Now..please note: He does get kinda crunchy sounding after 2.5 jars worth. So, we have to stop. He gets tired. Hence, his swallow gets weaker. Again...we've got a long road...but we are elated to be making progress no matter how slow. He's such a little trooper bubbabean.

Ok..the pictures below are ice cream Popsicles. He actually loved the cream part in the middle..but did not like the Popsicle part. It was fun to watch. And quite messy.

Enjoy loved ones. I know so many of you are praying still for our little man. We are so humbled and love you so much. God sure is in control of this thing. Keep you posted on the baby food intake. :)

Another milestone--pulling up

Hey ya'll,

How's this for looking into the future as a parent. (I can only beg and pray) It's funny but when I see Luke do stuff like this I always find myself looking beyond what he's actually doing. I know, I know.....I think way too much. :)

So here you go. Little Mister got on his knees to look at the fishy's in Jon's office yesterday. Mark it down for another milestone. So cute. I had to assist him in getting his legs up underneath himself but overrall he pretty much did all the work himself. He was so excited to be a big boy and independant. A new perspective for sure. Thank you Lord.

I'm so trying to pray preventitive prayers. I actually prayed he would stay on his knees for the rest of his life. Spiritually speaking of course. I really want Luke to know God and seek God first on all things. Not mom, not dad, no grandma or a teacher, best friend, etc. Not one person other than God do I pray he gets on his knees for. Oh..to be detailed here....the only God I'm talking about is Jesus. Hey! We have to pray in detail right?!! There's too many other worldly distractions and I pray with all my heart he just seeks Jesus. So...here's my little mister on his knees. Lord...keep him that way. Please? Way to go my love. Your doing amazingly. Momma and daddy love you desperately.

A parent's perspective with undiagnosed CMS

This post is for parents and medical professionals that need immediate information on how to take preventative measures to keep your child stable. It is a must read!

For 18mths our child went undiagnosed. Luke was globally hypotonic with minimal muscle tone and we just didn't know what we were up against.

As an advocating parent and a mother that prayed heavily for discernment I have narrowed down what I believe every medical professional should tell a potential CMS parent.

1) Manage the secretions. GET A SUCTION PUMP!! Maintaining the airway was so key with our child. CMS kids cannot manage their secretions when tired. Even if a child is 100% tube fed and not managing liquids and food...doesn't matter! CMS kids will choke on their own secretions. If you opt to do a secretion medication....don't mess with compound robinul! Compounding meds differ...try to use injectables and pull the med out with a syringe. You'll get more consistency and can manage their secretions better.

2) DO NOT ALLOW YOUR CHILD TO GET SICK IF YOU CAN HELP IT! CMS kids go into respiratory distress if at 100 temps (in our experience).
And, because some days they are stronger than others it can be quite deceiving until there is a viral sickness or any other sickness. I had to resuscitate my child at a temperature of 100 because he started chocking on his own secretions. Maintaining an airway is so key. Always have suction pump and oxygen on hand if sickness starts occurring. If we had not had a suction pump from day one, we would have lost him 3x.

3) Quarantine your child if you can. We never take Luke to public places and we never expose him to children. We just can't risk it. This has really worked for us in keeping him healthy.

These 3 things have kept our son stable and we believe that quarantining our child has been key to our success in keeping Luke out of the hospital.

I cannot stress enough how the secretions and maintaining a good airway has been so key for us.

I hope this information helps any parent and/or medical professional that might be facing this diagnosis.

I truly believe that by God's grace we as parents have been given an amazing intuition about our children. With an undiagnosed child, it's all you have. I trust and hope this will help any parent in the future. Stay with your gut! God gave you this intuition for a reason.

Warm regards,
The Hughes family