Tuesday, December 25, 2007

Christmas Morning


Monday, December 24, 2007

Waiting on Santa

This is the first time EVER that I found Luke sleeping on his tummy. 1st time EVER!! Of course, I had to run and take a picture. However, momma bear quickly rolled him to his side. :)
My little mister waiting on Santa in his bed and fell asleep on his tummy.
Merry Christmas Eve blog family-----We love you desperately-----A

Thursday, December 20, 2007

On the road to weaning...

Ok bloggies....(see video below)

Our dietitian came by last week and said Luke gained 1 lb this past month on baby food! We did not raise the formula (that goes through his gbutton) last month...instead we raised the baby food quantity and he gained!! We were so excited as that is our first sign of tube weaning.

So, from this point forward, we will not increase the formula through the tube anymore. We will increase his baby food as his nutrition charts show each month for his height/weight.

I'm hoping in the next month or so we will be able to CUT the tube feeding amount and then the process begins! It's so exciting.

Here's our little mister eating "Nanna's". (BANANA's) He doesn't actually say "Nanna" but for some reason we find ourselves saying it that way. Not good speech therapy skills...but it's so cute to say.

Oky Doky...enjoy! I do realize that this is a seriously long process. But, I wanted to post our first official accomplishment!

Wednesday, December 19, 2007

Another CMS friend...from France

Hey everyone!
I just had to post this. Ok...it's been a long time but with me creating Luke's CMS BLOG ....I had a dad contact me from France. His name is Philippe. His son's name is Nathan.

His son is 21mths old and has the EXACT GENE MUTATION of CMS. The Rapsyn gene. Meaning, Nathan and Luke have exactly the same genetic 'gene' that is considered defective. I hate saying it that way...but you know what I mean. It's hard to explain the genetics without saying words like "defective, mutate". Etc. I like to word that one of my gene's and Jon's gene collided. But..the neuro stares at me with confusion when I state this. LOL

Ok..! So..here is Nathan. Luke's first CMS friend and penpal. He's a FRENCHBOY!
I did write the father and told him that if by chance Luke/Nathan ever meet..... would it be ok if we opted to fly to France?!! LOL. Translation: We want to come visit and stay with you for 4 weeks and you be our tour guide. LOL again.

Doesn't he look just like Luke?? It's crazy!! He started on mestinon at age 4mths!! Yes..you got it. 4mths! He was diagnosed at 6mths!! France must be way ahead of the ballgame. I was a bit upset to read that. So...with that said, Nathan is finally walking! The dad told me to get ready as when Luke walks it will be an emotional day for us. You bet Philippe! It most certainly will.

Ok....hope you enjoyed blog family. I'm just desperate to build my baby's community for him so that when he's older he'll have friends! Can't wait to see what God has in store for Lukester and Nathan.

Oh----P.S. Yes, Nathan has a tube. Their stories are crazy similar. The dad said it's unbelievable to read Luke's story as it's so familiar to him and his wife.

Love ya'll so much,

Friday, November 23, 2007

Happy 2nd Birthday Luke



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

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. :)

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.

Thursday, November 15, 2007

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. :)

Wednesday, November 14, 2007

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.

Wednesday, November 7, 2007

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

Tuesday, October 9, 2007

Treatment for CMS

There are various gene defects for CMS. I have been privileged to have the Internet and speak with many CMS folks that have various gene defects different from Luke's.

It's key to note that one gene defect may not respond well to a medication that another gene defect will respond greatly too. In fact, sometimes it can be quite dangerous if you start treatment without really knowing exactly what gene defect your dealing with. My advice...GO TO THE MAYO CLINIC and get tested before approving any treatment. Or..have your blood sample sent to the Mayo under your primary local neurologist. All information here is just a glimpse of what some medications our CMS friends are responding well too.

Rapsyn Gene defect - Medication "Mestinon" and sometimes "3,4 DAP"
Dok-7 defects - Albuterol and/or Ephedrine

Again, there are a few other gene defects and some are not responsive to medication. It's so hard to know until you really seek professional help from the Mayo Clinic and/or your local Neurologist.

What is a Gtube button?


Special note by mom: As a parent, we were really 'freaked out' when the NICU doctors took us in a room and explained that Luke would need a gtube. What? we asked? What in the world is this about?!

At any rate, after an in depth explanation of what this was and why..we realized that in order to give the proper nutrition to our son...we had no choice. He simply could not suck/swallow without aspirating. He wanted to eat...KEEP THIS MIND...but it went down the wrong way. Aspirating means= going down to the lungs versus the esophagus.

Please, please hear me parents. It's NOT THAT BIG OF A DEAL. Trust me when I tell you...it's not! This surgery is performed worldwide with literally zero side affects. It's amazing! And..it saved our sons' life.

If you at all feel embarrassed by this, or have to surrender that your child is 'special'. Then, your not alone. We all go through it. However, when the rubber meets the road, you are the child's only voice. KEEP YOUR CHILD HEALTHY. Everyone will embrace it. And..the ones that don't...'know not what they are even looking at'. They are looking at the most amazing miracle created by man. (well, in my opinion..by God..) But, simply put..take advantage of the medical miracles that God whewed man to create to preserve life.

Much love....Andrea (mom to Luke)



Monday, October 1, 2007

Live Video of changing a gtube/button out..

Warning: If your squeemish in any way....I would not recommend watching this. However, if you want to get a glimpse of our life...then watch on loved ones!

A Gtube button change out for Luke was required. (his other broke on us) What this means is Luke's button broke and Wanda/I had to pull his current "broke" button out of his stomach and replace it with a new one.

I think you'll be fascinated by how easy this is. Now, please note: We have to carry a spare button everywhere we go. You've typically got 1 hour to replace the button if the button ever got pulled out and could not be put back in. Otherwise, the stoma (the surgical button hole) will close up and your back in surgery. (no pressure) :)

I used to have thoughts of us running to the ER. However, I did this myself the first time at 6mths and it was so darn easy. I felt very 'nursy'. Now...why waste a trip to the ER when you can do it yourself. We've come a long way baby. Here's a glimpse...sit back and enjoy. small tip: (I would not eat while watching)

Friday, August 10, 2007

A spiritual perspective from mom...

Hi, if you've run across our little blog site, your probably a parent and/or a new parent that has encountered a very scary path.

A sick child.

I want you to know that looking back on our journey with Luke...it was pure hell. I can't sugar coat it any less or more..it just was. The first 1.5years were just a blur to us as parents.

And..I understand greatly your heart right now. My heart was broken..literally when our child could not breathe on his own, eat on his own and move on his own. I was literally groaning in pain...and begging God to save my child.

I want you to know that I did not grow up 'churched'. I grew up in an average home with a bible on the table. That was it. We just didn't do the 'church' thing.

But, by God's grace and mercy..He found me desperate at age 29. I had Luke at 35 yrs old.
Therefore, I had experienced Christ a few years prior to giving birth to Luke....and by this time..I believed God could heal my child. Trust you me...I prayed fervently.

After Luke's 3rd 'episode' where he coded on me on our couch at home and I found myself in a helicopter with Luke in my arms and suctioning him as we flew to the hospital..I remember saying to God.."If this helicopter crashes..at least I'll die with my child". I didn't want Luke to be alone.

A few days after Luke's recovery (again..by God's mercy) I found myself in a spiritual 'crisis'.

My heart was in so much pain..we had no clue what was wrong with Luke. For the first time, I realized..I can't work for this in prayer..I found myself saying "God why?".

At that very moment..I knew I needed help. I made an appt. with a very wise man named Jerry that was a biblical counselor here locally. (God says..'seek elderly counsel') So, I did. I found myself sitting on his couch explaining all that had happened to Luke and how my heart was dying and that I for the first time started questioning God. "Why God".

He looked right at me after I poured out my soul and asked me "have you surrendered Luke to the Lord?".

I looked right back at him and said "I have no idea what that means..what does that mean..I'm so sick and tired of everyone at church telling me this...what does that mean!".

He looked right back at me compassionately as ever and said "Andrea, not many people really know what that means. In fact, if most people that say this really knew what that meant, they probably would never give out that advice". I was stunned to hear this.

At that very moment..I believe God sent this man to me to explain my heart, my pain and my torture. I wanted an answer...and here's what I got.

Jerry answered my question and said "I'll tell you what surrendering your child to the Lord means Andrea, it means, that God may not heal Luke. In fact, God may choose to take Luke home in one more year. And, when God decides to take Luke home, that same day, you get to pick out the color of Luke's casket. And, at the end of that day, you drive home and look up to heaven and say "God is Good".

***keep in mind churched readers...I get that Jesus heals..in fact, I believe it and pray for it daily. But...when confronted with the story of Job...at some point..there needs to be balance between God's plan and healing. I don't have the answers...I just know that God is in all and over all..He's allowing and planning. (praying like the house is on fire is non-negotiable to me..I'm a beggar)

So..back to my story:

I sat there shocked by what he said. In fact, I started to weep like I've never wept before on his couch. I didn't want my baby to die. Why would I have to surrender to giving up on healing? God specifically whewed me to pray for Luke's healing. I cried so much. I couldn't stop crying and I said back to him..

"I can't do that Jerry, I can't think about not having my child with me".

And his response was "I know Andrea, not many people can..that's why surrendering your will to God's will is so hard. It's so hard that you have to accept that God is in control so that you can have peace about Luke". "You need peace Andrea..you need to learn to accept the Lord's will, pray for His will and know that whatever happens...God's plan is always better..whether you like it or not".

I cannot begin to tell you the grief that came over. I cried like I've never cried before. I had for the first time in 1 year realized...I never considered God's plan. Now mind you, I cried out to God, I begged for prayer from everyone around me, I prayed like the house was on fire myself, but I never would even remotely consider that God may take my child. It just wasn't in me. Nor did I ever think about it. I just wanted Luke healed and I fought for it in prayer.

However, I realized..I was tired. I was doing it all on my own. I needed to find comfort in the very Lord that brought me peace in the first place when I got on my knees to accept Him at age 29. I needed peace. I needed to surrender Luke to the Lord and accept that God's will was better. I might have possibly made 'healing' an idol? Is there such a thing? I don't know...all I know is that my focus was the healing and to 'see' the healing. I pridefully would not even go there if any well intentioned Christian came my way and wanted to talk "suffering". In fact, to this day...that type of talk drives me crazy. Trust me....well intentioned Christians can be debilitating to talk too when confronted with a sick child. I needed GRACE. Serious Grace.

Jerry explained how acceptance is healing. Accepting that what happens 'that day', (not the next day) is key to living out peace with God. I can still pray for healing...but he instructed me to learn to accept God's way THAT DAY. Don't look into tomorrow. Accept God at the end of every day and say "Lord, you are good, I know this...Luke is yours..continue to do the work in him..He's yours and you take better care of Luke than I ever could. You love Luke more than I love Luke..this I know". Luke is yours Lord.

I accepted that Luke was God's. Not mine. A few days later, after much crying..peace came over me. Like a warm blanket. I'm here to tell you...it was divine intervention and an answer prayer from many people around me. I needed peace. I needed to know God was in control and I needed his Grace shed upon me and my dear husband.

We got it. A few months later, we found ourselves at the Mayo Clinic and our little Luke was healed through medication. We were in awe.

I write this letter to any parent that may ever question God. My hope is that this touches your heart enough to get on your knees at your bedside, alone..and you experience the sweetness of our Lord. It's a tough thing to grasp when your unchurched. But, I promise you...Jesus will show up. He will show you the way..the HOPE, THE PEACE and FAITH to bring you to the next step with your child and in some cases, the next day..or hour. Whether good...or bad. Either way, God is in control.

My hope has always been in God's word. I leave you with the one scripture that touched my husband's heart when Luke was very ill. May you grab on to this and know...Your child is GOD's. He will take care of your child. This I know.

Isaiah 40:29
'He giveth power to the faint; and to them that have no might He increaseth strength'

I don't know you..but if your reading this..please, please know. God loves you. God loves you so much.

Much love in Him,
Andrea (mom to Luke)

Thursday, August 2, 2007

Physical milestones - gait trainer going forwards

Hi...this huge chunk of metal is called a "Gait Trainer". Luke has had this for quite awhile and we are just now making some progress. He's starting to walk forwards! And...he's not crying for 30full minutes while in the gait trainer anymore. (Huge)

Here are the pics from yesterday along with a video of his newest physical milestone.....enjoy loved ones!

P.S. Insurance paid for this and all I'm going to say is "THANK GOD FOR INSURANCE!"

Wednesday, August 1, 2007

Cognitive milestone

Ohhhhhh ya'll! I got Luke some diapers at Walmart yesterday and went to the baby section. Yes..he's 20mths...but he's never been able to play with the 6mth toys and it's been a neat journey for us.

So, my OT (Occupational therapists) whom we love...suggested we start buying baby items that he can insert balls into pockets and/or holes that fit appropriately.

Lookeeeeee at this! The video is below and it's just amazing. We are in awe of this little miracle and we so wanted to share.

Note: Luke is teething serious molars right now and the only thing that soothes him is a 6cc med. syringe! So for you SN mom's out there....laugh on ladies! Laugh on with us because it cracks us up!

This is the toy I got...when Luke inserts a ball....the music goes off. Cause and affect..

He's trying to stick his med. syringe in the holes. So funny..we'll take it!
Enjoy the video below...

Sunday, July 29, 2007

Sunday swing time

Our little mister had fun swingin today. It was good to get out of the house and have some air time. Luke just enjoys outdoors so much. We need cooler weather for sure here in Tx. It was hot, hot at 9:30am. Whew. Much love family and enjoy, A

Video of Luke swinging...

Sit and spin manually

Our Luke can sit and spin now! Whoohoo----that's us doing the wave above.

Sunday, July 22, 2007

Taking joy in the smiles

Hello loved ones, it's not about the water fun in this blog. It's about the smiles. Yes, we are seriously taking joy in that our baby can smile.

Our sweet baby love is smiling soo big. Ohhhhh, wished you could see this in person. It's amazing and a miracle.

For those of you blog stalkers...can you see Luke's mikey button? That's where we feed him. In the SN world (SN=special needs) that area would be called his Stoma. It's a very clean and beautiful stoma. :)

And..I had to include some pics that were just too adorable with his new hat. Isn't it so cute?

Love ya'll!