Todays Activities

Via Mobile 10:20am
Just fitted Vinny for his foot braces. Wasn't expecting how they would be doing it.  They actually put a cast on him as if he broke his foot/leg, let it harden a bit and sawed it right off.  His little casts were so cute!   Of course he cried through the whole appointment; except when the saw was on.  Vinny likes loud noises like that sometimes.  Didn't help that he was tired before going in, which of course made it worse. Now we are waiting for his PT appointment. Should be interesting.  Updates coming soon. =)

Carter Center Results - Vinny's MRI

A couple months ago I sent Vinny's MRI results to The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations for a second opinion.  A few days ago, I received the results.  For those of you not already familiar with HPE, it is a birth defect that occurs during the first few weeks of life in the womb.  It is a disorder in which the fetal brain does not grow forward and divide as it is supposed to during early pregnancy.  There are 4 different types of HPE - Alobar (severe), Semilobar (moderate), Lobar (mild), and Middle Interhemispheric Variant.  Children diagnosed with HPE may have a small head, excessive fluid in the brain, variable degrees of mental retardation, epilepsy, etc.  Vinny has been said to have a small head.  Facial deformities are often present including cleft lip and/or palate, close set eyes, and flat single-nostril nose, just to name a few.  These are mild forms of abnormalities.  Much severe forms can also occur.  (Vinny does not have any of these.)

The cause of HPE is unkown.

Now onto the results.  The following information was supplied to me by the report itself.  There may be some words that you may not understand, but for the most part you will get the jist of it.

The Carters Center confirmed that Vinny was diagnosed with Semilobar Holoprosencephaly.  Based on their clinical experience they were able to share some preliminary information regarding Vinnys brain structures and how they may affect his future progress.  They first report that children with basil ganglia fusion may have severe motor impairments.  Mobility, upper extremity function, and language are all significantly related to the degree of basal ganglia fusion and thalamic fusion.  (I know you are probably thinking, what is this and how do I say it.)  Anyway, Vinny is classified as having mild/moderate fusion.  Of 68 patients in their study (13 alobar patients, 43 semilobar patients, and 12 lobar patients), only 7 patients can walk with or without assistance (2 of them being semilobar patients), and only 5 patients have normal upper extremity function (2 of them being semilobar patients).  Children with basal ganglia fusion also often have language impairments.  Of 35 children over 1 year old, a quarter of them can speak words ( 3 of them being semilobar patients).  Seizures also occur in about half of HPE patients.  The presence of cortical malformation was associated with seizures that were difficult to control.  THANKFULLY, Vinny does not have this problem!!!  Whew!!! 

The report also states that two-thirds of patients require g-tubes for feeding.  Endocrinologic dysfunction was noted in over two-thirds of the patients with all having at least diabetes insipidus.  The severity of endocrine abnormality was related to the severity of the hypothalamic fusion.  THANKFULLY, Vinny does not have this problem!!  Sleep and temperature regulation problems, seen in one third of patients, were also associated the hypothalamic fusion, and again THANKFULLY, Vinny does not have this problem!

 So there it is.  I have to say that these results are bitter sweet.  On one hand it was nice to see that there is HoPE for Vinny when it comes to walking and talking.  It was also WONDERFUL to find out that he will not experience seizures or have any of those other issues mentioned.  On the other hand, I can't lie and say that I didn't deep down hope that the results would come back and they would say "this child does not have HPE...what where the doctors thinking" or at the very least he would be diagnosed with a milder version. 

Either way, it is what it is and no matter what any doctor or any report says, we will love Vinny just the same.  He is special in so many ways and we really are blessed to have him in our lives. 

The Special Mother - By Erma Bombeck

When I finished reading this poem, I cried for a good 5 minutes. So many emotions where running through me.  Sometimes deep down I still struggle with the fact that Vinny was born with HPE.  Not a day goes by that I wonder what it will be like in the future for him....and for us.  I hate the unknown.  It scares me.  Reading this poem helps me realize that God knows what he is doing and that there is a reason for him truly blessing us with Vinny.  I know we are not alone and that God is with us every step of the way.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

Jakes Never Ending Excuses.....

Lately, my 3 year old has been coming up with excuse after excuse, trying to get out of eating, picking up his toys, any task for momma, and so on.  Let me just say that I've noticed these excuses never come out when Tony is asking Jake for something.  Here are just a few of his top excuses:

1. I'm tired...
2. I'm sooooo sick....
3. My foot hurts, I can't....
4. I'm sweaty...
5. You do it and I will help you....
6. I'm busy, wait a minute.....
And his most recent one
7.  Momma, I love you.  Now do I have to?

I can already tell that this list will have many more to come.

I've been published!!!.....Well sort of

I receive the About.com Special Needs Children Newsletter and the questions they asked was, Whats on your special needs parenting wish list?  See my answer here.

Question of the day - My thoughts

I was on Facebook this morning and came across todays question of the day on Moms in Common.org.  The question of the day was: What is the most insensitive thing someone has said about you or your child?  You can view all the responses here  or I have posted a few of the most shocking responses below.

Patty Workman Vaughan  wrote: I had an ear doctor tell me when he was 4 months old to send him off and forget about him. Well, that was the last time we seen him and I reported him to the Medical Board. Now, we have the best year dr. in the world...Dr. Sporck.  

Paula Watson wrote: I had one dr. tell me she hates treating children like mine because they were such a waste of the system's time, money and effort. I was stunned how can someone say that about my beautiful boys. 

 

Ginger Bradshaw- Burr wrote: My mom called a friend of hers to ask for prayer after our son was born with multiple deformities and the friend said to my mom, " Well, I think he would be better off if he just died." My mom was speechless!

 

What is with this world today that people think they can say such heartless, insensitive comments.  I was absolutely floored that these words could come out of someones mouth.  God forbid, anybody ever says anything about my child or any other child in my presence; because I don't think I would be able to control myself and not respond back.  I truely hope these people thought about what they said after they said it realizing how terrible it was; and NEVER do that again.....especially the Dr's who think that a child with dissabilites or deformities are a waste of time and effort.  If I have learned anything since Vinny's diagnosis, it is that we are all here on this earth for a reason and NOBODY is a waste of time and effort!

 

 

New Discovery!

A while back when we first started therapy for Vinny, Dawn, one of his therapists noticed that he really enjoyed anything that vibrated.  One day she came in and gave me this vibrating teether for him to have.  Up until now Vinny really hasn't had the ability to hold it and use it.  Today, he discovered that if he (or I) puts it in his mouth it vibrates.  He LOVED it!!!  And, let me tell you it kept him quite for a long time.  Now, I will never leave home without it and I definitely recommend this item.

On another note, today was also a much better day for Vinny.  As I mentioned in my past blog, Vinny has been a crabby baby.  Not too sure what the reason was, but I think we are past that now.  (knock on wood)  He was so enjoyable today!

His crabby-ness was really starting to get to me and put me into a bit of a funk.  I then begin to wonder and think of his situation and worry that I will not be able to handle it.  Deep down, I know I can, but it will be difficult at times. 

Vinny....

Well it has been a week since Vinny started Baclofen.  We have definately noticed improvement.   I tend to describe him as being a bit "mushy".  Before this medicine he was much more stiff.  Now, not so much.  I'm starting to wonder if it has been affecting Vinny in other ways.  These past few days he has been soooo crabby.  Its really starting to get to me.  I'm hoping he is just teething, because I don't know how much more I can take if its because of his meds.  Also, his nap times have become much shorter.  This is really a bummer for me.  I LIVE FOR NAP TIMES!!!!  Usually he would nap for 2 - 2 1/2 hours in the morning and then the afternoon.  Now, I am lucky if I get 1 - 1 1/2 hours.  Nap times are important to me because this is when I am able to do school work, house work (which if Tony would read this about house work, he would probably laugh....I'm actually giggling myself a bit too.)  Anyways, this is when I get done what I need to get done, no matter what it is.  If Vinny is awake; it's not that easy because it's not like he will just sit on the floor and play.  I have to be with him at all times.  We will see what next week brings.  Maybe he is just having an off week.

Today, I scheduled Vinny's appointment so that he can get fitted for his foot braces.  Hopefully in a few weeks he will have them.  I bet he will look so cute with them on.....and yes, I hope they help him out tremendously.  Vinny tends to bend his feet up and to the side.  These braces will be designed to help him straighten his feet and eventually he should be able to do it on his own. 

I just gave him a hair cut and the photo below will show you what he thinks of it.  :) !!!!!  LOL!  What a cutie!