Obsessed with bubbles

Ya'll...check this out. This bubble machine is crazy over the top amazing.

I took these shots this weekend.
It makes bubbles within bubbles! Luke is in love and it's making the days go by quicker.

Thanks to Daddy for the summer fun. Jonathan always knows how to make baby smile.

The bubble machine is called the "Gazillion bubble machine".
Enjoy the pics!

Another move, sorry Lulu

Hi, I like to call the following move "Back Stretch Couch Bounce".

He's extremely athletic.

This scares Lulu

A new thing. Scares the BaJesus out of Lulu. (his grandma...my mom)

Watch and see. (p.s. My video card was full and it stopped on me. But..you get the point) Hugs, A

2008 Neurology Symposium - Presenting Luke Hughes

A huge thank you to Dr. Susan Iannaccone for allowing us the opportunity to present Luke and help us become more knowledgeable on the subject of CMS. We are so very humbled and please know...we will always be available for any presentation! We want our Luke to have the best care and knowledge.

Also..a huge, huge thank you to the Neurologists that contributed and answered our questions. Oh...and big hugs for allowing me to share my passion in building community. The forum board will be up very soon.

Warm regards and God bless,

Andrea Hughes (intense mom to Luke)

Hi....well..we made it! The Conference was today and we were just thrilled with the outcome as it was everything we hoped for as parents. (and Grandparents!)

Luke did awesome. At one point he was insistent on grabbing my microphone and started crying...before I knew it....here I am talking and I turn my head and he has one! So cute. You see! Even the Neuro's spoil him. LOL

Overrall, it was amazing. The Neurologists were so gracious and allowed me 'the floor' for about 10 minutes. We got to say exactly what we wanted and asked the questions we were desperate to know.

Longstory short, the best thing we heard all day is that with this gene mutation...Luke has a great life ahead..GOD WILLING AND IF GOD WILLS IT.

In other words, what we heard today is that this disease is not regressing. This neurologist said it's pretty much the disease and then treated. The general feeling we got is that most of the CMS patients do really well with treatment. Glory to God! And of course...we love hearing that these other patients are married with children. Those are heavy words for us and it just made us giddy. As Jonathan would say.

The medical stuff for CMS PARENTS:

We asked the question about the long term use of Mestinon and what happens when mestinon might not be as effective later in life?

Answer: We were told that what they do is stop the mestinon for several days and start giving a drug called "Drug Holiday". Literally..just like it sounds..you take a Holiday break from Mestinon. At this point, and I hope I get this medically correct...the recptors take a break and rebuild themselves with the drug holiday drug.

At this point, after a few days of this drug...you go back on Mestinon and it's typically very effective and in some cases the patient doesn't need as much mestinon! Whoohoo. (I pray this for our Luke)

**A big thank you to the very informative Neurologist.

We got the overrall impresssion that CMS patients (with the Rapsyn gene) do very well with treatment. The overwhelming thing we learned is that all CMS patients typically have this ongoing decline during sickness and infection.

Also, we were confirmed that 'heat' really wipes these kiddo's out. One thing we've always noticed about Luke is that high heat (for ex. he's outside sitting in the sun...makes him extremely low energy and he becomes very lethargic)

OK..so...I believe that's it.

The only downside to CMS is the following complications are:
Lung disease; orthopedic issues and of course constant respiratory distress.

Obviously...I'm praying Luke is protected from this stuff. As I know anyone reading would never want this as well.

So...here you go blog family. We are proud, weepy, emotional and just so thankful to God for yet just another miracle in our lives. It's literally just day to day for us.

Pics are of me/Jonathan, Lulu, Dad and my stepmommy came in later! We missed her pic! But..we are grateful you came momma!

P.S. right at the part where we walk off stage...stick with it as I'll start my speech thereafter.

Thanks Lulu for video taping!

Congenital Myasthenic Syndrome - Announcement

Hey everyone, well this Thursday is Luke's Rockstar moment!

A few months ago the Children's Neurology Clinic (downtown Dallas) approached us and asked if Luke could be presented at this Neurologist Conference held at Scottish Rite Hospital this Thursday Feb. 21st.

Our primary Neurologist Susan Iannaccone has explained to us that Luke is very, very rare. His genetic disorder is 1 in 2 million. This has become increasingly evident to me as I've been contacted through Luke's CMS BLOG by parents in Greece, France, UK, Ireland, Turkey, and the domestic US. It's been amazing. Of course...it's been so great to build community with these parents as I hope that Luke someday can chat with their kiddo's.

With this said,.....pray for our Lukester to do great! They are putting him literally on a podium and approx. 200 Neurologist will be staring at him and asking tons of questions. We are very excited as we've been told we can ask questions back!! Whooohooo! Talk about a great resource. I've agreed to do this as I've said before....WHEN there is a cure for my Luke...I want to be the first to know. I will make sure all the Neuro's have a copy of Luke's blog information.

The Chief resident has already given me permission to do this! Whoohooo again!

So...I created a little banner of my baby! I'm seriously thinking of letting him wear the shirt that my little brother got him reading "I still live with my parents". So funny. I thought that the Neuro's would get a kick out of that.

Ok...I plan to video and take pictures of this event. If anyone with CMS kids are reading this..please, please email me your questions you want me to ask while we are there:andreas7@cebridge.net

Hugs!!

A

Watch our smart baby in Action- OT therapy

Our OT is back! Machicko is her name. (that's her on the left. I took her pregnancy pictures so you may notice her from my photography site. I missed her so much. She had a baby and she is back!!

OT= Occupational Therapy

Luke loved her like bigtime. She's got a huge gift. OT GIFTING for sure. He literally smiled so big when she walked in and started playing with her immediately.

Watch how smart our baby is getting with the PEG HOLES. He rocks! We love you Machicko!!

Boo and lonely bubble

Hi...went to see Dr. Hermann today. He was so impressed with Luke. He hasn't seen him since he was 1 year old! He was so excited to see and hear about his progress.

Ok...we are scheduling his booboo surgery for the week after next. Dr. H said that he's just fine until then and just make sure the swelling doesn't stay 'swelled' for too long.

So, we are on boo boo alert for the next 2 weeks.
LOL

Ok blog fam, love you. I posted a picture of a bubble I took when Luke was outside. I noticed my shadow and camera flash in the center of the bubble. So fun!

Ok...thanks for praying and more to come on the boo boo stuff.

Love you so much,
A

Appt. tomorrow for his Boo boo's

Well, we are heading out to Medical City Dallas to see Dr. Hermann about Luke's boo boo's.

I'm calling his testicals "boo boo's". Not sure why? Just sounds cute. If you call me in the next few days I'll say very boldly "Luke's testicals are stable". It makes me laugh. I can't help it!?!!

As you can see, this child is oblivious to the boo boo drama going on down there. Poor bubba. I'm sure it's better to happen younger than older.

Pictures are him enjoying his bubbles on the front porch. I hate for him to sit like this and play as this is what causes the swollenness. However, I've instructed the nurse to let him sit up for only 15 minutes at a time kicking. He's ok sitting calmly...it's when he goes into his Pilates ab sitting stance when they get large. I swear this child has ab's of steel! I'm not kidding!

Ok..pray for us and let's pray this can be done THIS WEEK! We are hoping so. This Dr. is super busy. He did all of Luke's other surgeries so we are excited to see him tomorrow.

Until then, Happy Boo Boo.

p.s. my spell check on blogger doesn't work anymore! Drives me nuts!

ER...this am (Luke)

Hi, well,
Jonathan heads to class this am. (totally out of pocket until noon)

I get up to have a relaxing day with Luke and around 9am I change his diaper. Well, what I saw was HUGE,....I'm talking huge testicals with this purple color and they were pulsating. (yes..I'm serious)

Luke was in ZERO distress and ZERO pain. So, I'm panicked as I'm looking at this and thinking..is this for real? I have noticed some swelling off and on this past week but chalked it up to his 'thingies' moving up and around? I don't know?

So, I call the pediatrician on call and she says to come up there. Well, the ER was closer and I just drove straight to the ER. Mom met me up there and very longstory short...they did a sonogram and it showed he had a hernia that will need surgery next week.

And...to really make it interesting...they asked "did he fall?".."did he hurt himself down there".

NO! He doesn't walk and doesn't ride bikes? UGhhhh, how does this happen? So confusing.

At any rate, we were told that he needed surgery and to go see the Pediatric Surgeon on Monday. So, off to see Dr. Hermann..once again. He's the guy that did Luke's button/nissan surgery.

Ok blog family...the swelling is going down and it comes and goes. The Dr's said as long as it comes and goes we are fine until surgery. If it doesn't then it's blocked with BM (yes..poop) and get him to the ER asap.

LORD, protect my baby. Protect us all. Keep him safe.

Uggh, I want to cry. Love you family,......keep little Luke in your prayers. More to come,
A

Busy Day, not much to say

All trying to recover from yucky stuffyness and Daddy's coming home today.

Mommy's tired and extremely busy working. Love you blog family...be back.

p.s. note: Luke has shorts on. Making progress.

So far, So good

Hi, well......Luke is doing great! He went to sleep at 5:00pm and woke up at 6:00am! I was astounded. I kept thinking he was going to wake up at 4am....but to my surprise he just cried around 3am because he kicked his blankies off of him and got cold. I covered him up and off to sleep he went. I was so elated as we both needed serious sleep.

I did the neb treatment this am and he's getting used to it. Actually...(Krista) your right, I was breathing in that stuff and I felt better. LOL

So, no temp, no funkiness to be alarmed about. Answered prayer. Thank you so much everyone for praying for our mister.

I leave you with Luke this am rubbing his toes on his favorite silky pillow. My friend Krista has a cousin named Callie and she makes the most amazing pillows and clothes. Luke loves this pillow and I just had to send you her new website. Her business has gone crazy since Christmas and I was elated to see she finally got a website up.

Here's her website: Callie's creations and I just have to say....This pillow is the BOMB. Luke loves it because it has a chenille side and silky side. He's my drama king. He likes the silky stuff.

It's perfect for sleeping and he's come to really love it. She also does custom pillow making for us special needs parents and if you want less stuffing....she can do that too. FYI

Luke rubs his toes on the chenille side. So funny. It calms him.

Thanks for praying and peeking. Love you, A

Prevention prayer and annoying mask

Hi, ok. I went to the Dr. at 10:30am....Dr. Vencil pronounced like "Pencil" except with a V.

He said if he was in Vegas right now he would bet that I have an upper respiratory infection versus the aftermath of the flu. His reasoning is that if I had gotten the flu...I would have gone DOWN immediately. Not the case for me. I was functioning with sinus stuff and on day 5 it's just gone bad.

So, he thinks it's viral and that there could be a potential Luke could get it. PLEASE PRAY against this in Jesus name for me? Please!

We are doing 4 nebulizer treatments a day and Luke went to the Ped again today and she said that he definitely is weezing. Uggh! Pray again.

OK.....signing out with the dreaded mask on my face. I hate this thing. I feel claustrophobic in it.

Pray for my cough and Luke right now please. It's seriously annoying and I'm tired beyond exhaustion. Love you,A

Yikes..type A Flu

Jonathan is not included on this blog because he's OUT OF TOWN! UGGHH

Well, last Wednesday Luke went to the Doctor and they swabbed him. As you all know, he temped for 4 days and then tapered off and I really thought..wow, he made it!

Well, this am the Dr. called and said it was type A Flu!! I about died. Where did he get it? Why not us? Well, maybe us. Jonathan was miserable (sinus stuff) and now I'm seriously dying. I've tried it all. I'm heading to the Dr. am.

Please pray for us. Luke is waking up choking...struggling to get air and naptime today really freaked me out. I'm at mom's house now on standby and we are getting ready to do the dreaded nebulizer treatment to open up his airway. Zopanex. I hate this stuff.

Just pray....my pediatrician said that day 5 of the flu is when bronchial stuff sets in . Pray against this and pray over Luke's protection from me!

More tomorrow. Just pray the neb treatment goes ok. Last time he turned blue and we had to stop. 1 year ago.

Please note: This is the first time in 1 year our son has gotten sick. We keep him quarantined and no cold, ear infections, nothing for 1 year until now. KEEPING YOUR CHILD away from other children does help!! We are a walking testimony of keeping your child ill free so that they can get stronger. It's hard...but we know it's best for Luke right now. Love you,
A

Huge Milestone! At 27mths...Luke is crawling!

Oh ya'll! Luke is crawling! At 27mths!! I was at my computer and turned around and he was crawling towards me. I about fell over. Sadly, Jonathan just walked out to get on a plane! He missed it.

So..this video is for Daddy and the blog family!

Sorry Daddy. I'll make sure I crawl to you when you come home! YIPPPEEE!

That's my mister

Update: Luke is doing better. Still a slight temp. But much better. His apples have gone down.

I, however had to cancel my retreat and I'm bummed and miss my girlfriends. Oh well, in August I'll go back.

Ok people....you have to watch this video. It totally cracks me up.

You know how everyone will see their child do something and say that cliche phrase.."that's my girl....or that's my boy".

Well, my child is just so funny. He gets lazy and will lean back on his big dog and start playing with toys with his TOES. He's done this from day 1 of Luke.

So, the video below will show him eating with his backpack on and turning a wheel on a car that makes a noise. At the very end of the video when he finally gets the music to come on...he starts dancing with his arms and legs.

Hysterical! That's my mister!!

CMS Sickness

Hey ya'll, well, about 3 days ago Jonathan and I started feeling 'uck'. We were hacking and just sinus'e'. So, Lukester started developing a temperature and we thought we got it under control but tonight he's back up. I just checked on him and I got it down again.

We are on the med shift again. Tylenol Q3 - Motrin Q3 --repeat that all night.

Pray for my Luke. We need him well and scootin on his butt again. He's been tired and just laying around. Poor little mister.

See his apples? He gets the brightest apple cheeks when not feeling well.

The video below will have me narrating and yep..not looking good! (I'm home now and waiting to flush his meds so I can go to bed)

NOTE TO NEW CMS PARENTS: Watch your child like a hawk when a temperature rises. This is when they go into what they call respiratory crisis mode because they get so weak. Luke would choke on his own secretions...and we had to clear his airway by suctioning. It's key you know this. However, this time....he's on mestinon and we are noticing a significant difference in his weakness while temping. For the better thankfully.

Love ya'll----be back

(see the bruise above his eye below? He got that after a late night party around 2am next to the window. We still have not recovered....we are sleep deprived)