Tuesday, June 14, 2011

Update on us

So I'm currently in my second week at my new job.  I am enjoying it very much.  I definitely miss my babies though and can't wait to be working 2nd shift so that I can be with them during the day.

Last week was a bit difficult for me in regards to Vinny because every time he would be with me, he would scream bloody murder {no exaggeration here}.  He would scream every time I would set him down or even give him any attention.  Turns out, he was mad at me. {tear} He was mad that I had left him everyday with someone else to care for him.  Needless to say that when this was brought to light, I bawled like crazy {no exaggeration here too}.  I felt so guilty that I made him feel this way.  It broke my heart.  However, going into this week, him and I have become much closer.  I think his anger towards me is slowly diminishing, and he is beginning to understand that during the day he goes by a sitter and before he knows it, mama is back holding and kissing him {this would actually be an understatement, I maul my kids.  I just love them so much!}

Anyways, the kids are having a great time at their babysitters house; and to me that is all that matters.  They are cared for in every way that I would hope and that makes me happy!

Sunday, May 29, 2011

I Did It!

Last weekend, May 21st, I graduated from college with a diploma in Medical Transcription! It was a great feeling as I walked into the auditorium to take my seat with other graduating students. Finally, after getting married, having two children, months of hardship and trying times, and long nights studying; I earned my chance to walk across that stage and receive my diploma. I couldn't be more proud of myself. I FINALLY did it!



- Posted using BlogPress from my iPad

Friday, April 29, 2011

Sunday, April 17, 2011

Piece of Mind

Tomorrow, Vinny starts attending a home daycare.  I've decided to put him in one once or twice a week so to have the much needed time I need to work on my school work as this semester finishes up.  I've also been in search of someone perfect for him so that when I do get a job, I am comfortable with where he his going.

I was referred to a home daycare by Vinny's Birth to 3 coordinator of a women who only accepts children with special needs.  The reason for this, is because she has a special needs child herself, and knows how hard it is to find someone that you can trust to care for your child the way we would care for them.

I met with Nikki last Tuesday and instantly felt comfortable knowing that Vinny would be in great hands.  Nikki and her husband remind me sooooo much of Tony and I, and she knows exactly what we go through because she went through it herself.

I also feel comfortable knowing that she has 12 years experience as a nurse, an early childhood education background, and has a love and compassion for special needs children too.

When we visited her home, Vinny was such a good boy, even with me sitting there.  He played with her daughter who is also the same age.  Not once did he want me to get him.  In fact, I think he didn't even want me to be there ;)

This will be a great fit.  I knew it from the moment I met her, and this certainly gives me piece of mind that he will be cared for appropriately.

Friday, April 15, 2011

Approaching the Finish Line

This is what I have been looking at for what seems like forever.  My nights consist of many opened books on both sides of me, with loads of medical terminology and transcription style and formatting rules everywhere I turn. These past few weeks I have been crazy busy with school work.  Finally, it's coming to an end in the next few weeks.  To finally have the ability to work as a Medical Transcriptionist will be great.  Now if only I can find a job.

On my left

On my right
My beloved resources
Update:  Job search = Complete!!!! 

Friday, April 8, 2011

Brothers

Here is a video of Jake and Vinny playing.  Jake loves to hold Vinny, and Vinny gives him a run for his money as you will see in this video.



Also, almost always on a daily basis, I have to separate these two boys at the lunch table because Jake likes to make silly faces at his brother while he is eating resulting in Vinny laughing hysterically with food in his mouth.  Can we say "choking hazard."





Silly Face
Hysterical Laughter - wish I had this on video

Moments of Sadness Reply

I recently replied to a posting on our HPE Yahoo Support Group in regards to the moments of sadness we, as moms to special needs children, experience.  This is what I wrote:

I can completely relate to this. Based on the rest of these replies back, you certainly are not alone.

For me I call these moments 'Vinny Moments', because it is the times when I think about how things could have been. I have one trigger that gets me in my Vinny moment, and it is when I see my nephew, just two months older than Vinny, walking, talking, playing with his siblings, etc. To see this adorable little child, unfortunately, is a dagger in the chest for me. I'm reminded of the fact that Vinny will not be able to do those things. But I'm also reminded that he CAN do those things, but in his own way.



Every smile, every laugh, every attempt at crawling on the floor, every attempt at grabbing what it is he wants, and every day that he is on this earth, is a miracle. How many people can say that they live with or have lived with a miracle. We are SO LUCKY to have our special children, and I wouldn't change it for the world.


I've posted on my blog an entry called "wandering mind". Its about how I worry about the care for Vinny when I am gone. Again, it is something that I think about, and those thoughts and the thoughts of what could have been will never go away. I get through these moments because I find true comfort in knowing that I am not alone, and that I have a great group of moms and dads that can relate and provide support and encouraging words.

Thank you to all of you!

Friday, April 1, 2011

My little law abiding citizen

For the week of Feb 28th - March 4th, Jacob was student of the week from grades 3K-5K.  He received the "Good Citizen" title by following rules and laws, involved in family, school, community and country{?}.

Way to go Jake!

Tuesday, March 29, 2011

Party Preparations - Jake's 5th Birthday

Jake's big day is coming up in less than two months and I have been so excited with the planning process.  This will officially be his first birthday party.  Hopeful attendees include all 14 of his classmates.  Birthday theme is baseball, and oh, do I have some great ideas.  This will {hopefully} be an outdoor party, so first order of business is to do a little construction and add stairs onto the deck going down to the side yard {much needed improvement, photos coming soon}.


Design theme I plan on going with is, of course, the Milwaukee Brewers. Jake has requested games of freeze tag, bag toss, baseball, silly string fights, and bubbles. What he wants, he will get. Photos of the big day are coming soon!

As you can tell by my advanced planning, I am very excited for this party!!

Logo of choice



Monday, March 28, 2011

Back at school & Baclofen

After a week of Jacob being home with a fever, he is back at school. I dropped him off this morning and he was greeted with open arms {literally} and excited "hellos". Such a loving teacher and sweet children he goes to school with. I know he felt special this morning and I enjoyed that smile on his face.

Vinny, on the other had, is back in his crabby, I'm-in-pain mood. I know he probably is, but I don't know what to do about it. We've upped his Baclofen, and I have a feeling it is causing him these issues. I've heard that he could be in pain from the muscles being stretched, but I think it is causing him constipation pain. I plan on calling his physical medicine doctor this morning in hopes that he will have some answers for me.

It is so frustrating having to watch Vinny like this and not being able to help him or ease his problems. Really hoping this gets better soon.

Other Baclofen users: have you ever had this problem while increasing this med?

- Posted using BlogPress from my IPad

Friday, March 25, 2011

Speech-Picture Cards

Just a few of the cards
Vinny worked with today.
This morning Vinny's speech therapist Misty came over to work with Vinny.  We tried a new technique today, and started using simple picture cards for Vinny to make choices.  HE DID AWESOME!!!! As you can see, the pictures are very simple and Vinny understood them beautifully.  He made clear choices by choosing exactly what he wanted and was able to tell us if he was all done or wanted more.  We even switched the cards around when it was time to chose and he still chose the one he wanted.

I couldn't be more proud of him.  We most certainly will be working more with the picture cards to communicate better with Vinny.

Tuesday, March 22, 2011

Hard Work and Determination

From day 1, Vinny's therapists have always been amazed at how willing and determined Vinny is during his therapy appointments. I too, am amazed at what a fighter my little guy is, and I couldn't be more proud of him.

Here is a video of Vinny working so hard to try and crawl. He doesn't ever give up and very rarely now complains while on the floor.




- Posted using BlogPress from my iPad

Wednesday, March 16, 2011

Wandering mind

A recent HOPElights facebook post prompted me to write this entry about what happens to me when my mind wonders sometimes.  Here is what the post said:

I am a parent of a child with special needs. I worry about what will happen to my child, after I am gone. It is hard to explain this to others who are not in the same predicament, which leaves me feeling lonely and sometimes scared. But just as the moon rises and sets above me, I will have faith, hope and confidence that the right answers, at the right time, will unfold before me and my child will be protected with love. HOPELights♥


Just yesterday, while lying down during Vinny's nap, my mind started to wander.  It's hard to explain, but it goes so fast.  A single thought about anything can trigger a new thought related to Vinny and what he has, and what his future and our future will be like.  Yesterdays wandering mind, brought me to think about who will take care of my son when I am gone? {tear}  Who will make sure that he is well cared for? Who will keep him from going to some facility, alone, with no one to talk to or care for him like I would?  This breaks my heart and tares me up inside, and even as I write this I can't hold back the tears. 

Vinny will always have his brother, I know that.  But I just worry about everything else.  It is a terrible feeling, the unknown.  During that brief few moments when my mind wanders, that too, is a terrible, scary, and isolating feeling, and then like that, I snap out of from my wandering mind, pray for some peace and guidance from God, and move on. 

A quote can change the way you think about challenges you face. -Catherine Pulsifer

Monday, March 14, 2011

Recent Ipad Videos

Here are a few videos I took of the boys last night playing with the Ipad.



Jake  (4 years old) doing addition!


Vinny tracking the baby!


"Those live on Pirates"

Vinny playing


A Little Humor - part 2

An email surfacing around: Enjoy!

First Grade Drawing - PRICELESS!


A first grade girl handed in the drawing below for her homework assignment.


The teacher graded it and the child brought it home.
She returned to school the next day with the following note:

Dear Ms. Davis,
I want to be perfectly clear on my child's homework illustration.
It is NOT of me on a dance pole on a stage in a strip joint surrounded by male customers with money.
I work at Home Depot and had commented to my daughter how much money we made in the recent

snowstorm.
This drawing is of me selling a shovel.

Sincerely,

Mrs. Harrington

iPad Baby!!!

Yesterday we went out and bought an Ipad!!  I can't wait to see what can be done with this thing. The boys are loving it, and I will post some videos soon. 

I am opened to any and all the app suggestions you have.  Please leave a comment on this post with your recommendations.  ~Thanks!

Tuesday, March 8, 2011

A little humor

The following is an email going around showcasing church bulletin BLOOPERS!  I received this today from my sister-in-law.  So funny, that I thought I would post it here. I've highlighted my favorites.

Enjoy!

Those wonderful Church Bulletins! Thank God for church ladies with typewriters. These sentences (with all the BLOOPERS) actually appeared in church bulletins or were announced in church services:

1. The Fasting & Prayer Conference includes meals
2. The sermon this morning: 'Jesus Walks on the Water.' The sermon tonight: 'Searching for Jesus.'
3. Ladies, don't forget the rummage sale. It's a chance to get rid of those things not worth keeping around the house. Bring your husbands.
4. Remember in prayer the many who are sick of our community. Smile at someone who is hard to love. Say 'Hell' to someone who doesn't care much about you.
5. Don't let worry kill you off - let the Church help.
6. Miss Charlene Mason sang 'I will not pass this way again,' giving obvious pleasure to the congregation.
7. For those of you who have children and don't know it, we have a nursery downstairs.
8. Next Thursday there will be try-outs for the choir. They need all the help they can get.
9. Irving Benson and Jessie Carter were married on October 24 in the church. So ends a friendship that began in their school days.
10. A bean supper will be held on Tuesday evening in the church hall. Music will follow.
11. At the evening service tonight, the sermon topic will be 'What Is Hell?' Come early and listen to our choir practice.
12. Eight new choir robes are currently needed due to the addition of several new members and to the deterioration of some older ones.
13. Scouts are saving aluminium cans, bottles and other items to be recycled. Proceeds will be used to cripple children.
14. Please place your donation in the envelope along with the deceased person you want remembered.
15. The church will host an evening of fine dining, super entertainment and gracious hostility.
16. Potluck supper Sunday at 5:00 PM - prayer and medication to follow.
17. The ladies of the Church have cast off clothing of every kind. They may be seen in the basement on Friday afternoon.
18. This evening at 7 PM there will be a hymn singing in the park across from the Church. Bring a blanket and come prepared to sin.
19. Ladies Bible Study will be held Thursday morning at 10 AM. All ladies are invited to lunch in the Fellowship Hall after the B. S. Is done.
20. The pastor would appreciate it if the ladies of the Congregation would lend him their electric girdles for the pancake breakfast next Sunday.
21. Low Self Esteem Support Group will meet Thursday at 7 PM. Please use the back door.
22. The eighth-graders will be presenting Shakespeare's Hamlet in the Church basement Friday at 7 PM. The congregation is invited to attend this tragedy.
23. Weight Watchers will meet at 7 PM at the First Presbyterian Church...Please use large double door at the side entrance.
24. The Associate Minister unveiled the church's new campaign slogan last Sunday: 'I Upped My Pledge - Up Yours.

Tuesday, March 1, 2011

Vinny's week in photos

Here are some recent photos of Vinny from the past few days!

Sitting in a restuarant highchair for the FIRST time....
not without a lot of side cushioning to keep
him from falling over, though.

Focusing on his work!

Getting his hair cut by mamma, while
shoving a fist full of hair...{yes, hair} in his
mouth.  By the time we were done, it
looked as though he had grown a beard :)

Monday, February 21, 2011

Fingers Crossed....

I just submitted a request at The Prayer Child Foundation to help with some of the costs of an Ipad for Vinny.  Through listening to some of my HoPE family, Babies With iPads, and doing a little research on my own, I really feel that this would be a beneficial device for Vinny. 

Since I know they have funded grants for Ipads in the past, I'm keeping my fingers crossed and HoPEing that Vinny gets his grant too.

Friday, February 18, 2011

New Gear...Approval Pending

We had a rep come out to our house the other day to fit Vinny for some adaptive equipment.  Vinny is growing out of many of his seating chairs, so it is now time to utilize our resources and get Vinny the equipment he needs.  This process, however, will take about 60-90 days to get approved through Medicaid and ordering.  Hopfully by the end of spring Vinny will have his new gear.


I never leave home without my stroller for Vinny, so first on the list is the Kimba Pediatric Wheelchair.  This will certainly come in handy for Vinny because it will provide the support and comfort he needs and deserves.  What I liked about this chair is that it will grow with him for the next several years. Vinny and I were able to try this one out and with all the options it comes with I thought this would work best for him. 

We will be getting the color shown!




Also on the list is a bath chair.  We chose the Otter Bathing System.  I haven't had a chance to try something like this out for him, so I am keeping my fingers crossed on this one and hoping that it works out for us. 

For all the HPE mommies reading this, any suggestions or ideas would be appreciated.  What are your favorite products that worked for your child?  They may help out Vinny too.

Thursday, January 20, 2011

Smarty pants!

I have to say, Vinny has the best therapists ever!

Yesterday his PT and Early learning teacher where at the house working with Vinny.  He did great!  His teacher told me that Vinny did so well picking matching pieces...(such as a pig head and a pig butt).  She said that Vinny completely understands what needs to be done, and it only takes one time to show him.  What a smarty!!!  Good work Vinny!

Friday, January 14, 2011

It's been a year for Vinny

Gosh!  It has been a very long time since I have written on this blog.  I am not a very confident writer, which is probably why, but either way, it has been a while. 

Since my last post, we have come upon many "anniversaries" in regards to Vinny.  Here are a few....

On December 7th Vinny celebrated his 2nd birthday.  This was also the 1 year anniversary of the day he went in for his MRI to find out why he was not developing normally.  You can see last years flash back post here.  Needless to say, his 2nd birthday by far surpassed his 1st. 

Just 2 days later was also the 1 year anniversary of the day the once scary 17 letter word forced its way into all of our vocabularies.  Holoprosencephaly....ahhh how a word can change your life and some of the peoples lives around your forever.  I still remember that call like it was yesterday, Vinny's neurologist giving me his diagnosis.  I will NEVER forget that day...ohh what a sad day.  I was devastated.  Here is last years post.  I think back at how scared I was for Vinny.  One year later, those fears are not there.  Vinny is the happiest and healthiest little boy!!!

Finally, as of this month, Vinny has officially been in Physical and Occupational therapy for a year.  I can't believe the progress he has made.  He went in to his first appointment as a tight fisted (literally), tense, screaming little boy....and now he is none of that!  His arms are always flailing about, he's sitting almost on his own, bearing all his weight on his legs, and so much more!  A year ago, I never thought he would be doing as much as he is doing now.  GREAT WORK LITTLE GUY!!!  We did make a few changes too.  He is still at Childrens Hospital for his OT, but now takes PT from home, along with is education teacher and soon speech therapy.  Certainly makes my life much easier!