The little reader

Well, Sunshine started speech therapy at our local elementary school.  She’s flat out shocked everyone with her retention of words.  She site reads completely from memory. I had 1st grade book today reading it with her sister.  In an echo, you could hear Sunshine quoting what I read.  Then I took the book, and read it to her pointing at the words.  She then opened the book, read each page perfectly except the last… from memory!  It’s been amazing how it seems by treating her MCAD, we’ve seen this amazing door open with her mind.

The gangs all going to school!

This year has been interesting to say the least.  But now, school has started and only our youngest is home all day.  She’ll be starting speech therapy in a couple of weeks, but that will only be 3 days a week for 30 minutes.  Thank God I don’t hae to let her go just yet.

Of course they all marched off to school with huge smiles on their faces.  It gave me so much peace and joy, but it brought tears to my heart.  I know one day they will say goodbye, and I won’t see them for weeks at a time. 

Things are really changing with our music careers as well.  Ron’s newest CD got picked up for publishing, so he’ll be promoting and on the road more. It seems everybody is leaving the nest! We had to get the cover redone…..here it is:

Sunshine ended up not having her suregery! We decided to put it off as long as we can, and so far she’s not had any ear infections or throat issues that warrant concern.  She goes to see her M.C.A.D. doc next week, and we’ll probably be changing her medication dosage since it’s been the same for a year.

Destiny got accepted to modeling/ acting school. We are all so happy for her, and by the years end, she will go on casting calls for acting.  She’s always wanted to act, but I felt she was too young.  Now that she’s 13, we are happy that she gets to finally pursue something that makes her soul smile.

Diamond has been having some axiety associated with school.  It’s all just so much with her: Diabetes type 1, low blood pressure, audiotory processing delay and now we think dyslexia is an issue!  She’s a trooper though.  One never would have thought my beautiful premie baby would overcome so much, and turn out to be one of the most sincerely amazing 9 year olds on the planet.

RonDavid is now mainstreamed in regular classroom environments. He was diagnosed with aspergers when he was 5, and is just profoundly smart in academics. His social skills have come so far, and we are so happy he can finally adapt to learning in an environment that is least restrictive and so much fun.

Rose is absolutely loving 1st grade.  She always has been so articulate and interested in learning, that I knew she would thrive away from home all day instead of half day like last year.  I really love the way her teacher supports her, and I think this year is going to be so much fun for her.  She is also interested in being a runner.  That child seems like she’s run ever since she came out the birth canal, and it’s so cool to watch her.  At her school they have a walk program, and she is so excited.

Tyler (twin A) is cautiously thinking school is ok.  He’s definately moe interested in the social aspect more than the work, but he’s so smart, just doesn’t like to sit still. He said he didn’t want to go to school because their teacher asked him to sit down and be quiet during reading time.  I tried not to laugh, but it’s so typically him. 

Tyson (twin B) on the other hand, is so tender and excited about school. He tears up still when I have to drop them off, and you would think he hated it.  But he’s used to be mommy’s other youngest, so he’s been having some issues with drop off time.  But when he runs out the door, the smile on his face could light a thousands lamp wtih fire.  His work is so detailed that it looks like an older person colored all inside the lines.  Tyler, on the other hand, will do what the minimum it takes to say something is complete.  IT’s so cool how different they are.

And me, well, I’m just dealing with all that has to be done.  I’m actually busier with them in school than at home.  It takes so much to get them all out the door, homework done and then to bed.  After they are sleep, I make lunches, do laundry and all the other fun stuff.  I wouldn’t trade it for the world.  I love being a songwriter parent.

Father’s Day

Well, Father’s Day was good.  We all went to church and had an amazing service, and then came home to BBQ ribs with the fixins’.  lol

The best highlight, is that Daddy’s album is finally finished! Here’s the Cover.

The release date is August 30th, and I’m really proud of his work.  God has truly blessed him with an amazing voice, and I’m just honored to be able to write with and for him.  It was exciting this time around for some of the older children to go to the studio as well.  We really let them have some creative input, and I could see the light in their eyes. 

Oh, side note.  We cancelled Sunshine’s surgery and rescheduled for the 22nd of July.  I just don’t feel comfortable yet, and until it is utterly necessary, I want to save her the experience and life risk.

God bless everyone.

Michelle

Mother’s Day

Mother’s Day was bitter sweet.  Sweet because my adoring 7 children were so wonderful. They sang, they laughed…they lived to make me happy.  Bitter… because our sweet Sarah wasn’t here.  I miss her so, but I know one day I’ll see her again.  She would be almost four years old now.  Running right along side her brother’s and sisters…ah, what a sight I would have loved to have seen.

So I sighed alot, cried alot and smiled so much on Mother’s day.   I’ve really been clinging to all the children this past week.  It really is the greatest gift to be their mother.  Out of all the thousands of women who want children, I was blessed enough with these… I am truly lucky.

Makes me really want to have a couple more.  lol  I just love the sounds that they make when they are so young.  And I absolutely love to hear them say my name and giggle.  It truly is a wonderful place to be…  I am so thankful for God looking down and loving me through them.  I love to look into their eyes and see the hope they have of things being just fine.

Little Ron got diagnosed finally with a huge hole in his eardrum.  After three weeks, we will see if it healed itself, and look at what damage has occurred to his hearing.  Hopefully it will not be permanantly lost.    No matter what, I’m just glad he’s still talking and able to communicate.  I remember the years when we couldn’t even understand him, nor he us.  He is dianosed with Asperger Syndrome.  He is very highfunctioning in academics, but struggles terribly with social situations that are new.   I know he’s going to do great though. 

Well, today is today…. and I’m just another woman looking back and enjoying the view.

peace, love and music,

Michelle

Yay!

We all had so much fun at a place called “The Wilderness.”  It’s where animals walk around free and you can pet them.  You have to stay in your car, and they even let you buy food to feed them.  The kids had a blast.

My hubby gave me the best Mother’s Day present ever.  It’s so nice to be able to do all the grocery shopping at once, and have all the children with me.  And Sunshine loves being able to see better out the windows when we drive.

A few of the children have been having a really bad allery season. It’s been crazy! RonDavid got simmers ear, and it turned into a yeast infection in his ear.  I didn’t even know you could get a yeast infection in your ear!  I felt so sorry for him.  They had to vacuum suck out the stuff in his ear, he was screaming bloody murder so we stopped. He’s on an antibiotic and drops in his ears.  It seems to be getting better.

Diamond is really suffering with her diabtes as well.  This season causes her to bottom out every year.  It’s weird.  They say the allergies shouldn’t have anything to do with her diabets, but we’ve noticed this trend the last 3 years for sure.

This month, Sunshine is scheduled for suregery on the 13th.  I may cancel it though. It’s just too life threatening.  She is supposed to get her tonsils and adnoids out, and then get ear tubes.  But with M.C.A.D. it’s just so dangerous. I just think unless she can’t breathe or begins to get a whole in her ear drum, we should just deal with her allergies and wait until she’s older.  It’s difficult to get her to understand staying in the hospital.  With sensory issues, it’s even worse.

Michelle

Oh what a day!

Well, I’ve finally resigned myself to “officially” working out.  At 5 am this morning, hubby and I went to the gym.  I’ve been dragging all day!!!  I feel proud of myself that I’ve made the committment, but it’s overwhelming to think of the amount of weight as well as the time it will take to get it off.

So, people tell me to just focus on the day and the “fun” activity, so that’s what I’m going to do.  I went over my enrollment papers for college.  Yes, after 12 years, I’m going back to school to finish my degree in Social Sciences.  I’m doing an online program, so it really shoudl work well with the children’s needs and schedules.

Our eldest is going to be homeschooled through to 9th grade, and it really is a joy having her here and watching her learn and be so excited.  The rest of the children are homeschooled off and on.  Depends on the extent of the flu virus on one hand, and also just our schedules as musicians and finishing an album…ect.

So many of the children are talented singers and the oldest even songwrites.  I guess it was inevitable with all that they see on a day to day basis.  We went to church Sunday evening to watch daddy at rehearsal.  A few of the kids joined in on drums and other instruments, and I couldn’t have been prouder!!!  Hey, maybe we’ll have a band afterall.  lol

So for now, mommy is officially tired, and anxious to wake up at 5 a.m. and go for her morning swim.  Here’s to love, life and music.

Michelle

So what is M.C.A.D?

Good question.

MCAD: Medium Chain acyl CoA Dehydrogenase – Information for Families
Charles R. Roe, MD

Medium chain acyl CoA dehydrogenase deficiency, or ‘MCAD,’ is a disorder in which your body is unable to breakdown fats to make energy. Normally, fat is broken down into energy by “enzymes.” This energy keeps your body running whenever it runs out of its main source of energy, a sugar called ‘glucose.’ In MCAD, a very important enzyme for breaking down fat, the medium chain acyl CoA dehydrogenase enzyme (MCAD) is missing or does not work correctly. This means that people with MCAD can’t break down fat for energy when they run out of glucose.

The easiest way to respond is this: This is our youngest little cowpoke:

I remember the moment she was born.  I kept telling people that I thought she smelled a bit funny.  I couldn’t explain exactly what she smelled like, but I knew it just wasn’t the “same” as my other six children. 

One thing about our baby, she could eat and eat AND EAT!  But she wasn’t overweight.  She would even wake up in the middle of the night hungry, so… I would feel her.  Countless friends wouuld tell me I should just let her fuss a bit and then fall back asleep, but that just didn’t sound or feel right to me.

Thank God I listened to my inner “mommy,” and not the “experts!”  When she was 2 and a half years old, I finally had a doctor listen to me about her smells.  She wasn’t very verbal, and hardly liked anyone to touch her, so they told me she had autism.  I thought that might be true, but I asked for further testing.

Low and behold, they did blood test and were shocked to find out she had M.C.A.D. If I had put her to bed and not feed her, she would have experienced low blood sugar, possible coma and death.  Most children diagnosed with M.C.A.D. are diagnosed during an autopsy!!!  I was so stunned, but then again validated for my concern.  As soon as she started her medication for M.C.A.D., she began talking and responding like an average 3 year old. 

We still have some sensory issues which now are being associated with the autism spectrum, but that’s not too scary.  At least she’s here with us, breathing and laughing through life.

I just want to encourage all parents to follow your instincts and never let other’s persuade your inner light.  God bless, peace, love and music

Michelle

Introductions

Hello all! I finally decided it would be interesting to let people have a glimpse into what others call chaos and we call fun. My husband Ron and I are musicians who have been blessed with seven beautiful children. Along there way there have been many ups and downs, but through it all LOVE has triumphed.

Through diagnosis of diseases I’ve never heard of (M.C.A.D.), to the dreaded “autism”, we have persevered with our faith and love. I hope this blog encourages at least one person to NEVER give up on your dreams.
sincerely,
Michelle