Glasses are here

Jonathon and I went out yesterday and picked up his glasses again.  You see the first pair were made wrong;the lense had a flaw in it;he was supposed to wear them for our "Buddy Walk", but we couldn't.  We have been keeping this secret from most of our friends and family.  Not that it's a big deal;we just wanted Jonathon to have time to adjust before they all started coming out of the woodwork to see him(voice their opinion). Okay, maybe mommy needed time to adjust too, before I put up with everyone else and their comments.


Yesterday was rough.  Jonathon was very sad ~ He didn't want to wear the glasses.  He would stick out his bottom lip and it crushed my heart.  I didn't stop though.  I kept putting them back on.  Let's just say by dinnertime I was extremely frustrated AND very glad that it was almost bedtime.  EXHAUSTION is an understatement.


And lets remember if you missed the previous post:  Jonathon is wearing glasses for farsightedness and lazy eye.  Same symptoms his father has.  His father has worn glasses since he was 3.  Jonathon could out grow this one day~ not a promise and not going to worry about that.  Not making excuses ~ this could be the result of his extra chromosome, but it also could just be plain ole HEREDITARY!

Yesterday before glasses

Don't like these mommy!

Getting used to glasses

There's my happy boy!

Today has been a better day!  We have had a few moments, but I have to say overall he is doing pretty good keeping the glasses on.  I think they are a little crooked now;I tried to fix them at lunchtime but not sure if I did.  I will let the expert(daddy) take a look when he gets home later.  I decided yesterday before the big brothers got home that the best way to go about Jonathon wearing glasses was to ignore the fact that Jonathon is wearing glasses.  I even text Andrew to let him know this and to tell Kenny before they came in.  I know all they wanted to say was "oh your sooo cute"  "I like your glasses"  but they didn't.  They did just what I had asked of them and for that they are 2 great big brothers.  And my theory is working.  As long as we don't make a big deal about it he seems to be ok overall.  AND I have been wearing my glasses more to show him that we need to wear our glasses.  (mine are just for when I am on the computer or reading).

Jonathon is napping now and resting his little eyes.  Then we will continue our day;learning to like our new glasses!

This ""IS" my Jonathon!

Pumpkins

Random Thoughts

Jonathon and I have had a pretty quiet week this week.


1. Monday ~ We did absolutely nothing ~ But hang out
2. Tuesday~ School cancelled ~ both teachers sick
3. Tuesday afternoon ~ went to Dr. Braces and picked up old braces ~ new velcro put on
4. Wednesday - woke up to no power ~ packed up and went to Rylee's house for breakfast. ~ then we came home and got dressed and went shopping
5. Thursday ~ School cancelled O.T. teacher sick ~ stayed home
6. Friday ~ Playdate with Rylee cancelled ~ stayed home ~ Jonathon coming down with a cold


During all this past week I waited for a phone call from the Optician.  They are remaking Jonathon's glasses because I found a wave in the lense.  They were supposed to be rushed, but I am not sure what kind of rush.  The whole week went by and NOTHING.  Will be calling on Monday.


Jonathon spent alot of time drawing on his easel with the marker side.  He is now doing really well.  When we first tried in July he kept holding the marker upside down and coloring his hands.  So I just let him do the chalk side.  Well now he is able to do the marker side.  I am very proud of him because he is trying really hard to do circles. They are not exactly correct circles, but you can tell its not just a line any longer.  Great job son!!!!


Friday night was rough on Jonathon, he was having a hard time breathing; I am thinking this is the start of a sinus infection.  He has been doing awesome.  We made it through the whole summer with nothing.  Last year his first sinus infection was in September so this is good, it's almost November.  I had Andrew get a ride uptown this morning to buy Jonathon some Benedryl.  Gave him that and Tylenol(slight fever) and he is breathing much better now.  Hopefully we can nip this in the butt and it not turn into a sinus infection.


Looks like no school for Jonathon this week.


Called Dr. Pediatrician to schedule flu shot ~ they are all gone.  Jonathon has been added to the list and they will get back with us.  BUMMER


Jonathon is doing great eating finger foods.  He really enjoys being a big boy while eating cheez pons and goldfish crackers and graham crackers.  I just sit and watch in total amazement, it's been a long time coming and I am sooo happy for him.  He really concentrates too, it's precious and brings tears to my eyes.


We are still practicing on spoon and fork alone.  He is doing good for a start with the spoon feeding.  We try on yogurt and pudding.  Sometimes mommy gets so busy at dinner time that I just forget and just do it.  I watched Supernanny last night and had a good reality check when the father was feeding his 3yr. old.  Ummmm I need to just take the time to let Jonathon try and not be so rushed.  It makes me mad that hubby doesn't help out more at dinnertime.  But somehow someway Jonathon and I will figure out how to get it done.  We always do!!!!


I have changed feeding schedule too.
7a.m. breakfast
9a.m. snack
11a.m. snack
12p.m. lunch
3p.m. snack
5-5:30p.m. dinner
7-7:30p.m. dessert
8p.m. bedtime
I added a snack in there and letting him stay up a little longer.  I am working on getting him to just go to bed.(I still rock him).  I love rocking Jonathon, but he needs to learn to just go in and go to sleep.  I am hoping by Christmas time we will have this accomplished.
Thinking about switching bedrooms back so our room(Jonathon)is in back of house for my quiet.  Right now we are in bigger room but its right off of the living room and kitchen and it gets loud at nighttime.  He moves around alot and I think it's the lights and noise.  We will see.  Will let ya know what I decide.


Oh and our new words are "MINE"  "Kenny"(really clear now). trying really hard to say "please"

Potty Scotty - Urinal for Boys

Jonathon loves his new potty! Urinal. It is working out awesome! Now when we say "Lets go Potty" it doesn't take us as long to get him to stop what he is doing and going. I think he really enjoys the fact that he can go in there, not take all his clothes off, pee and be on his merry away in about 20 seconds!


He is becoming a big boy ~ and it is working out really well that he is able to tell me when he needs to sit to "poop". No accidents yet!


About my only complaint is that when you dump it, it kinda makes a mess on the very edge of the toilet. I just wipe that up with toilet tissue, but besides that I am very happy with the product and it doesn't take up any space in my small bathroom.


I would recommend this product to anyone that has a boy potty training. Not just special needs. I wish I had this years ago for Kenny and Andrew!


Outside public bathrooms have been a little better. We are using our portable/foldable potty seat . I haven't even tried holding him in the standing position again. He is at least urinating with the seat. But we are still having issues with noise in some stores and he really doesn't like his headphones anymore. I try singing ABC's (people probably think I am weird walking in and hearing that! :). I am trying to keep those stores in the back of my head and just avoid them for now.


I am very proud of Jonathon!


I really think technically Jonathon is potty trained. He never has an accident. He is sometimes just a tad damp, but that could be drippage after going or just before he goes. As long as we take him potty he is great. I cannot wait for the day that my son tells me all on his own that he needs to go. He has done this 3x. It's a start. And that's why I still say Potty Training!


And here is the link again to a great product!
http://www.pottyscotty.com/Urinal-for-Boys.html

St. Clair County Down Syndrome Support Group Buddy Walk 09

was on Saturday October 17, 2009.  We had a wonderful time considering that it was very chilly outside.  We walked with temperatures in the low 40's.
We had a ton of support this year for our very first walk.  We had about 19 people walk with us and our team "Team Fishy Cracker" raised about $905.00 and we won "Grand Marshall" for the day ~ which means we got to lead the walk and we will be pictured on next years brochure and we were in in the local paper. http://www.thetimesherald.com/apps/pbcs.dll/article?AID=2009910170334
We did let Jonathon walk for a little bit, but this is not the picture the paper used.  I did email the The Times Herald and let them know how disappointed we were that Jonathon is not in the picture. I was very upset and cried when we bought the paper yesterday.  I really feel that the whole day was for awareness and the paper messed up when they didn't even picture the child in our family that actually has Down Syndrome.
but onto better things.  After the walk they had a raffle.  The raffle consisted of A razor bike, gift cards, Christmas ornament(Down Syndrome Society Buddy Walk 2009)(this was my donation), gift cards, a necklace and mp3 players.  Well I gave family members my tickets because Jonathon had to use restroom and we got a phone call before we were finished that JONATHON won the bike.  How awesome.  I couldn't believe it.  But after  we got it home and were able to look at it and discuss it, we will be taking it back to get something Jonathon can use.  The bike is for 5yrs and up and is for the city.  We live in the country on a dirt road on 6 acres.  It would never get used.  So we will get something in its place.  Also there was hot dogs, chips and pop for a small purchase.  Over all a great day considering it was so cold out and we thoroughly enjoyed ourselves and cannot wait for next year.  We are already planning!  We have to beat our goal of $905.00 and win Grand Marshall again.  Thank you to all our family and friends for donating, getting donations and walking with us for Jonathon.  We love you very much!  Awesome Job!!

Wordless Wednesday

Day 14 of 31 for 21

2009 Empowerment Awards

I was invited to the 2009 Empowerment Awards ceremony at St. Clair County Community Mental Health this afternoon.  I was a recipient of the HOPE AWARD.

Right afterward me with Gilbert

Me, Carol-Ann(my sis) and Jonathon

My Awards

Write up about me

HOPE AWARD

Presented to a person who lives by the motto. "I can have dreams,"

and is committed towards working hard to achieve those dreams.

Certificate from Candice Miller(Member of Congress)

Certificate from House of Representatives

Flowers, Card, Cake from my sister and her husband and son

and my godmother Barb

Necklace ~ from my sister

Close up ~ box says They do come True ~ Wishes

What an HONOR ~ What a DAY!

Day 9 of 31 for 21

Like Father Like Son

Some people may say that the result of Jonathon's eye exam has to do with him having down syndrome.  Okay, maybe ~ maybe not.


Some things in life happen because of hereditary reasons too.  Sometimes I wish people would take that into consideration before just assuming it's because he has an extra chromosome.  (yes I do get irritated at times).


When my husband was a little boy (he thinks 3) he had to get glasses.  He has a lazy eye and he is far sighted.  He has worn glasses his whole life.  


So when Dr. Eyes told me Jonathon's diagnosis I was shocked. ( farsighted and a slight lazy eye) Yes I know now and have always known with my 2 older boys that it has been a possibility of wearing glasses because their father does.  But I was not expecting Jonathon's results to be just that.  I was overwhelmed!


Dr. Eyes explained that because we are starting glasses out at such an early age, there is a good possibility that Jonathon will outgrow his eye glasses(his prescription will get better over time) and eventually not have to wear them.  Just a possibility ~ not a promise.


When we went over to Children's Eye Clinic ~ which is right across the hall~ I started getting a little nervous.  The Optician explained to me that neither of Jonathon's insurances were approved through her.  If we wanted to use her we would have to pay out of pocket.  She told me to call my insurance company and see if they will reimburse us some of the cost.
We definitely stayed at the Children's Eye Clinic ~ my sons eyes are not something I am willing to compromise.  He needs the best care.  Soooo we pay out of pocket and hope we can get reimbursed somehow/somewhere.


This was very stressful for me ~ my baby is going to wear glasses ~ there are 2 different kinds to pick from ~ my husband is not at this appointment with me ~ how are we going to pay for glasses ~  I had to step out of the room and call Gilbert to come right away ~ luckily he works about 15 minutes away from where we were ~ I then took Jonathon to the restroom and just broke down~ I cried for my little boy whom I just want to have a happy healthy life that now has to endure the pain (annoyance) of wearing glasses~ I cried because I don't want my baby to wear glasses ~ I cried for the fear of him being picked on for wearing glasses ~ I cried for the days ahead that he is going to fight me to keep glasses on his face ALL day long ~ I cried because I just don't want any of this!


I did regroup/calm down ~ I let Jonathon go potty and then we went out into the hall to wait for daddy ~ by the time Gilbert arrived I was composed enough to continue ~ I did not tell Gilbert I had a meltdown ~ he wouldn't understand anyway ~ we went back into Children's Eye Clinic ~ we picked out glasses for Jonathon ~ which I don't like ~ we put a deposit down on the glasses ~ we will receive a phone call next week when they come in. (WHOOPIE) NOT


We have a good warranty on the glasses ~ we get 3 breakage/scratch/loss for no cost per year.  That's pretty good.  I won't say the price, but its over $200 and under $400.  But it's a price I am willing to pay for my sons eyesight.


As I thought about writing this post and I as I sit here and write this post, I think/ask myself why?  Why do you have the right to be upset over your son getting glasses when there are some children out there right now that have alot worse going on than glasses.  A little boy who needs a trach ~ a little boy who has had multiple heart surgeries ~ a little girl who just had major brain surgery ~ a little boy who will never walk a day in his life and more.  I feel like I am being selfish in some ways, but my only answer to WHY? is because this "IS" my life, this is "MY" story and to "ME" this is my newest devastation!


Day 8 of 31 for 21

Wordless Wednesday

Day 7 of 31 for 21

Potty Training Update

So as most of you know I have been potty training Jonathon since last Feb 09.  Over all he is doing great.  Couldn't ask for anything else.  Well I could, but patience is a virtue....


Will Jonathon ever just say he has to go potty ~ I sure hope so.
Will Jonathon ever sign potty to me on his own ~ I sure hope so.
Will Jonathon ever just walk over to the bathroom and use it on his own ~ Wow, I sure hope so.


We have moved up from going to the potty every hour to every 1 1/2 - 2 hours.  He has even made it longer if we were out of the house.  This is a good thing, because you don't realize how quick 1 hour goes by until you have been doing 1 hour potty breaks for the last 7 months.
Plus it is a good thing, because it proves that Jonathon is growing and learning and understanding the whole potty issue and can control his bladder longer.


Jonathon also pretty much understands "poop" and knows when he has to go and when he doesn't. (He has never had a "poop" accident)  I have done quite well working around his schedule and understanding when he needed/needs to go.(mother intuition I guess) Maybe ~ Maybe not


So here is our new issue lately ~ when we are out and about AND at home (more when we are out, but still enough that I am concerned).  Jonathon is getting mad about standing(me holding) him up to "pee".  Well he is too short to stand on his own and at home he doesn't like to use the stool to stand up either.  Why you ask?  At the store, I am not sure, besides he just doesn't like me holding him.  Yes I have a portable foldable toilet seat I can use for him to sit.....But 1. He is a boy, he is supposed to stand ~ 2.  When he does sit, alot of the times we end up soaking him, me, the bathroom floor(I know, it's funny), but it's a pain.  They don't have the little cup on the to go potty seat and yes I can admit myself that I am lazy and it's just quicker the other way.  At home he doesn't like his legs touching the toilet ` it's wet, it's cold.  I have tried everything to help him out.  It is becoming a pain.


So I discussed it with daddy ~ he said " take him in the mens john and let him "pee" at the urinal". umm ok.  not happening.  not that desperate yet.


When we use the family bathroom at the mall, they have a little toilet that Jonathon stands right up to and has no problem "peeing".  That's why I know it's time to find and do something for him.


So I have been looking online and this morning this is what I found and ordered for Jonathon.  I am very excited and can't wait for this to come in the mail.


Will update more after Jonathon tries it out....


I hope my link works ~I have never linked before.  :)


http://www.shopspecialneeds.com/servlet/the-148/WeeMan-urinal-boys-potty/Detail



Day 6 of 31 for 21

Jonathon and Food

Over the past 2 months Jonathon has really started eating alot better.  He is finally understanding that all those teeth in his mouth do serve a purpose ~ eat better food ~  I really thought he was going to eat baby food forever ~ I am so happy that we have not bought 1 single jar of baby food since July.


We moved onto more soft foods when we quit baby food.  I bought him things like mac n cheese, hamburger helper cheeseburger macaroni, spaghettios, spaghetti in a can.  I tried the gerber graduate food and he really disliked it.  I slowly introduced other foods while I still let him eat his soft mac n cheese etc.


He really started picking up more food toward the end of August.  


This is some of Jonathons menu that we keep on hand.


Breakfast - Lucky Charms, Waffles, Pancakes, and Oatmeal(only Maple Sugar)


Lunch - Grill Cheese, mac n cheese, gerber graduates ravioli(he will eat now), lunchables(ham,cheese, crackers), microwaveable entrees(lasagana, chicken with carrots, peas, noodles, t.v. dinners(fish sticks, chic nuggets, turkey with stuffing), have slowly introduced peanut butter/jelly sandwiches, hamburger helper cheeseburger mac, ziti paramesan


Dinner - pretty much anything that we are having except venison(he still needs help chewing that one), but he loves anything italian ~ spaghetti with garlic bread, goulash with garlic toast, lasagna, chicken with mashed potatoes, green beans, corn, peas, fish sticks, chicken caserole, perogies and kielbasa and tacos.


Yogurt, applesauce are his favorites
Loves goldfish crackers and can eat these all by himself now, same with graham crackers, he actually sat and ate homemade chex mix with daddy the other day, ice cream ~ loves ice cream, cheez curls.


I am probably missing some, but just to sit and write this much down shows me just how well he "is" actually doing.  Wow!  Thought it would never happen.


And he loves juice now, will suck down the whole cup right away, which he would never do before.  I sit and laugh ~ you have to sometimes just to keep going and to realize that yes you do make a difference in your childs life.


I am thinking by Christmas he will be eating all on his own. (new goal we have set for ourselves). :)


I can still remember getting up/staying up all night long and bottle feeding my baby EVERY 3 hours to put weight on him to get ready for heart surgery and so they would NOT put a feeding tube in.  And to think I thought that was rough.


It is my long term goal to keep the weight on Jonathon and so far ~ I am doing just that!  Of course it helps when your child actually cooperates.


Day 5 of 31 for 21

Becoming a Big Boy

You never really know that your child is growing up, it kinda sneaks up on you all of a sudden.


As I sat and watched Jonathon play today, I thought about all the things we have been working toward since he was born and realized it is actually becoming a reality.


He was playing with his learning semi ~ loading and unloading the cars like you are supposed to ~ driving the truck around like all little boys do ~ making truck noises ~ making horn noises ~ and pulling it by the string.  I sat and played with him for about 40 minutes doing just that.  It was so awesome.  Things that other people take for granted, us parents of special needs children cherish every milestone.  He is really becoming a big boy.


As we sat and ate dinner, he did great eating the whole t.v. dinner ~ chicken nuggest, mac n cheese and corn and applesauce.  Half way through he got mad at me ~ I thought maybe he was finished ~ no he wanted to do it himself ~ another milestone slowly being accomplished.


He is enjoying his trampoline and actually starting to bounce up and down a little bit.  We worry about him falling and getting hurt, but we have to remember that he is a big boy now and we can't/shouldn't hold him back ~ this is what we have been dreaming about and our dreams are coming true!


I love you Jonathon and I am very very proud of you!
Love Mommy


Day 4 of 31 for 21

New Therapy Item

So Jonathon graduated out of physical therapy last week.  One thing that his P.T. and I discussed was that Jonathon needs to learn how to "jump".  I asked her what could be some ways to help him with this besides me standing in the middle of the floor jumping.


She said a trampoline could/would help.  So Gilbert and I took Jonathon shopping today.

And we shall "JUMP"

Day 3 of 31 for 21

I Won

I was nominated for an award!  My previous social worker and my current social worker nominated me!  I was/am honored!  They needed "my" permission!  Who wouldn't want to be nominated?


I won the "HOPE" Award!  I am not positive what the 2 social workers wrote about me.  I am not positive who voted.  All I know is that I won and the Empowerment Awards Ceremony is Friday October 9th from 2-4p.m.


This award is all about being a mom to Jonathon.  I won because of the type of mom I am ~ I guess.  Like I said, I don't know alot.


They want a picture of Jonathon and I.  Good luck, I "HATE" getting my picture taken.  I have been trying to go through pictures to try and find a good one.  I even sat down and had Kenny "try" to take a current picture of Jonathon and I.  Lets just say that didn't work too well.


I am very honored that I won this award.  I am excited and nervous about the awards ceremony.  I am not a person that draws attention to herself.  I do not like talking in front of a huge crowd.  I hated speeches in highschool.  I hope I keep my anxiety under control that day.


I am allowed to invite guests.  I am taking Jonathon(of course), Gilbert(hubby), Carol-Ann(my sister), Nik(Rylee's mom), and hopefully Barb(my godmother).  Andrew and Kenny(2 other sons) will not be able to go.  They will be in school during that time.  I wish they could be there too.  But the rules have changed for highschool(Andrew) and you just cannot miss anytime.


When I know more, I will post more.


Day 2 of 31 for 21 

October is Down Syndrome Awareness Month

Bloggers all over the world commit to posting everyday in October(31).  I am joining in and going to do my part in raising awareness for Down Syndrome.


If you are one of my followers that have been reading(lurking)and not posting. Now is the time. "Get it Down 31 for 21"


Jonathon had school this morning with Miss Amanda(O.T.).  He loves her so so much and time just flies by when we are with her.  I am really glad that I (we) have her.  She has helped Jonathon alot over the last year.


We were able to fit snack time in with Miss Amanda before our time was up. We picked Goldfish(a.k.a. fishy cracker) and apple juice (juice box).  I just wanted moral support to see if Jonathon could eat the goldfish cracker "all" on his own without having any issues. (of course deep down I knew he could) We usually just take bites.  Well he did it!!!!!  He took the cracker and took bites like I always do with him.  Then Miss Amanda told him to go ahead and after that initial first bite to go ahead and put the rest in his mouth.  She was very pleased that he understood her directions and he did just that.  Took a bite and then put the second bite in right away and of course "chewed" and swallowed and all is good.  I feel silly, but sometimes I just need that second person to experience it with us. (even though I knew he'd be ok.)


Over the next few weeks - no rush - we are to bring something in that he needs to use utensils with.  She wants to see where he is at.


Good job today Jonathon - Mommy is very proud as always


And day 1 is complete.