Acceptance

Wow a post 2 days in a row..who am I ???

Today something extraordinary is going on.Today is full of love,education and acceptance for Owens syndrome.To see all the support from our friends,family and strangers is pretty amazing.It starts with a post.One simple post.That one post gets shared and eventually after a BIG game of tag there are hundreds of people who know about Moebius Syndrome.Hundreds of people sharing acceptance and knowledge of other peoples struggles.

I hope everyone takes this day to not only acknowledge Moebius Syndrome but to teach your children to accept others even if they are different looking,shy, have a different personality or different beliefs then you.As parents we are the ones who mold our children and teach them right from wrong.Teaching them to accept others is part of doing right from wrong.As adults I hope you take today to look at your relationships with others.How do YOU react when you see someone that is different or not to your standards? I hope you take today and pledge to change your thoughts and actions.

I want to again thank everyone from the bottom of my heart for all the support and love you have shown us in the last almost 2 years of Owens life.This is a journey we are on and Im so happy to share it with all of you and spread awareness to others.Mark your calendars For Jan 24th every year and don't forget to wear purple to show your support!

HAPPY MOEBIUS SYNDROME AWARENESS DAY!!

The unexpected

You would think by now I would get use to going to an appointment for Owen and it not going as it was suppose to,shocker the answer is NOPE ! Every time I have the same feeling of shock and the thought of "what the heck just happened".

Its a familiar feeling of anxiousness as you check in. Politely ask how the receptionist day is.Sit and listen to the other parents stories of why they are at the specialist.Wish them luck as your name is called and patiently wait for the doctor.

Dr.O'Halloran is our favorite doctor out of all of Owen doctors.While they are AMAZING doctors and im thankful for each one of them, there is something about him that makes you feel comforted and confident in his abilities as a doctor.At four months old he was our first specialist we were able to get into.He is the one that diagnosed Owen with Moebius Syndrome and started our rounds of test to confirm it.He is always patient and fully informative. From that very first visit he told me that Owen would have to have surgery at some point on his eyes.He would have to get the muscles tightened and a gold weight in his eye lid to help him blink and close his left eye.I processed it but moved it to the back of my "saved thoughts" I guess pushing it off till the time came.Well today was the day I had to process those thoughts.

Its almost like a hot flash when it hits you.Your whole body starts to get really really hot.You want to wipe the sweat off but you don't want to show fear. You nervously interact with your kid to try and not show your emotion of being upset of the news you just herd. I personally start fidgeting with my hair as well and tend to try and put it in a bun that falls out a thousand times and wont stay in place.Every time Dr.O'Halloran sees me in a moment like this his words are always,"we have talked about this before there are much more difficult things in the world that he could have." These words are spoken with a comforting tone. A tone that it will be ok and he is in safe hands.

Today it was decided that Owens eye is getting worse.He wants to do surgery on it as soon as possible.He will be putting a gold weight in his eyelid to help him blink and keep the eye closed as well as tightening his eye muscle to help with the cross-eye and the placement of his eye.  Owens eye is severely dry and his cornea is drying out.It is almost at the point of causing damage so he will purposely clog the lower tear duct to try and help the eye stay moist. Currently we put gel drops in his eye during the day and a lubricant gel at night.It is not helping him in the way they thought it would since Owen cant close his eye properly.

The thought of surgery is very scary.Its not the most invasive surgery and I can process that, but as a mom any time you don't have control over what happens I think is a terrifying thought.For me the scariest thought is thinking about saying goodbye and kissing him as they put him to sleep.I know he is in great hands and I hope in a couple months when its all over with I can look back and feel silly about my thoughts of being so scared.For today I am going to have my pity party of being upset about it.Tomorrow I will put my big girl panties on and move forward.

A very friendly reminder is tomorrow is Moebius Syndrome awareness day.We wear purple to spread awareness and support to others about Moebius Syndrome.I cant wait to see all the pics of our family and friends wearing purple.

Looking back and Looking ahead

With another year coming to an end I find myself looking back at the long tiresome days,weeks and months that it held.I also find myself looking forward not just at the next year but years ahead.

Its sometimes amazes me that I have 3 children,a house in a awesome community and a husband of almost 10 years.The places and people I have seen and met along the way sometimes seem like a dream and a really fast time warp.This year was my 10 year High school reunion and there are days I feel like I could be back in high school, riding in my now husbands, old Black Honda civic on a Friday night to a football game in my cheer uniform.In those days you thought you had life rough when your parents were mad at you for not cleaning your room or doing your chores.Now I AM that parent.No my kids arn't that big yet but I know sooner then later they will be.

As a parent and adult in general you realize what rough is sometimes.For me its staying up all night with my sick babies knowing I cant help them in anyway but hold them and sing to them. Driving hours on end, week after week, to make sure my special needs child has the best care he can have.Spending hours out of my life at therapy with him just to make sure he can develop on time.Working on school projects and spending that extra time with them on their homework just to make sure they understand it. Volunteering at their school and being on the PTO to make all the difference I can in their education.Or simply all the time I spend driving them from one activity to the next with a screaming baby, that as hard as you try to ignore still gets the best of you some days.

If I could explain this last year in one word it would be Exhausting! As a Mom this is what I choose to do.I would never in a million years change my life but find it healthy to acknowledge it can be rough some days,weeks or years out of your life.

I find sanity in realizing I don't really have that much time with my kids. Understanding how short 10 years can be makes me want nothing more then to spend as much time with my kids as I can. In the next year as everyone is making their New Years resolution I urge you to consider making one for your kids..I want to not be so quick to be angry with them. Appreciate that they will make mistakes and help them learn through those mistakes instead of get mad at them.I pray for more patience with them and my husband and I want to slow life down a little bit.A family motto we have is "No success in the world makes up for failure in the home" I want to try and live by that a little more this year.

I wish all my friends and family a happy and healthy Year to come.As always remember to  Be Kind, Smile and Give love!!

Brownie,Oreo and Cookie Bar

Disclaimer: YOU WILL GO INTO A SMALL COMA AFTER EATING THIS!!

I have to start by saying I DID NOT come up with this. But it is pretty amazing

INGREDIENTS

1 cup (2 sticks) butter, softened
1 cup granulated sugar
3/4 cup light brown sugar
2 large eggs
1 Tablespoon pure vanilla extract
2 1/2 cups all-purpose flour
1 teaspoon baking soda
1 teaspoon salt
2 cups (12 ounces) milk chocolate chips
1 pkg Double Stuffed Oreo's
1 Family Size (9×13) Brownie mix
1/4 cup hot fudge topping

gather all ingredients and take a photo lol

Line a 9x13 pan with wax paper and lightly spray with cooking spray

Mix all ingredients EXCEPT brownie mix,eggs, Oreo's and hot fudge in bowl to make your cookie dough

Put cookie mixture in bottom of dish

Line with Oreo's

Mix brownie mix with eggs and pour over top the Oreo's

Bake at 350 degrees for 45-55 min,I like mine a little more"crunchy" so I cooked it for 52 min

top with Hot fudge....or in my case..

Ice cream and Peanut Butter

ENJOY YOUR SUGAR COMA!!

The life of Owens Tummy

To start off I want to say I have missed writing,not that I did it much, but when reading back on my earlier post I realized why I wrote all my thoughts in the first place.It is a great release to express yourself and share your info with others.With that said I want to share Owens tummy troubles.

The tummy of Owen is pretty upset.Starting right around 2 months old he became this fussy crying creature that I didnt know how to take care of.My girls were never like that so it was a new territory.Then at 2.5 months the projectile vomit started.Sorry for the bluntness of it but it was nasty.**Mom tip carry an extra pair of clothes for you at all times and cover EVERYTHING in your house with blankets** After trips to the Gastroenterologist he was diagnosed with GERD.The next couple months consisted of changing his medicine  a couple times and me changing my diet because I was nursing but it all seemed to help.We officially stopped his medicine at 11 months old and all seemed good till he got weighed on the scale.

Owens weight was always a concern but they thought he just wasn't gaining because of all the throwing up he was doing.Once the throw up stopped we had to start to look into other reasons why he wasn't gaining weight(3% underweight) so It was advised that I stop breastfeeding him.We started him on regular formula and it went down hill from there.2 weeks of explosive diarrhea and throwing up later we switched him to Nutramigen.No big deal Kenzie had to be on that.Well 2 weeks of that and no change.At this point Owen is now starting to loose weight.We then try Soy milk...this time he starts to get blood in his stool and woke up with a huge buldge in his tummy.After a trip to the ER and to his Gastro doctor we were told he has a Ventral Hernia and put on new uber digested and broke down food called Pediasure Peptide.

The peptide is its own story about fighting with insurance to pay for it(which never happened) It cost us $188 out of pocket for a 9 day supply!! It seemed to help but he still had terrible diarrhea with it and was still loosing weight.We tryed Almond milk and have been doing coconut milk as well.

Yesterday we had an apt with the Allergist(just add it to the list of Owens specialist) It was awesome to have a doctor break it all down and tell me how the body works and reacts to things.Owen was such a trooper looking like a little old man shirtless waiting for his test.After a prick on the back and a 15 min wait it was confirmed Owen has a severe Milk protine and Soy allergy.OK I as a mom I think I knew this but it is nice to have it confirmed.Again it was awesome to get all the info on the allergy and the difference between intolerance and allergy.Because of Owens other eating issues due to Moebius he gets most of his nutrition from a bottle.So now we are on a whole new formula because the Pedisure peptide still had milk protein in it.Our new food is Neocate Jr that he will be on till he is about 2 years old.Im hoping this will help him start gaining weight because he is officially diagnosed with "Failure to thrive" Yesterdays weight he was 17.1lbs and he is 14 1/2 months old....to put into perspective at 3 months he weight 13lbs.

I know we are on a long road of a medical maze with Owen and I thank you all for you support and prayers.

My little trooper waiting for his test:)

O.T. and P.T backtracking

This post is to reflect back on all our progress threw O.T. and P.T.

I want to start by saying it is a VERY difficult thing to admit that your child is "behind".Every part of my logical thinking  knows that Owen has Moebius Syndrome but I on a everyday basis compare him to "Normal" kids.For starters he was a month early.To some this may not mean anything but if you have a child that was early you can relate.All 3 of my kids were early (4-5 weeks) so I am use to putting them on somewhat of a curve but Owen I am struggling to understand where he will be in his development.

We started him on therapy at 3 months old.Getting ready for my first visit I remember thinking"we dont need to go he is right on track for all of his "skills" he needs to be at.When I left his first appointment I remember feeling crushed.He wasnt anywhere where he needed to be.To start not only is Owens left side of his face effected his ENTIRE left side in general is effected.

Owen's left hand was always closed in a fist,he wanted to hold something in that hand at all times.He wouldn't grab with his left hand.He wouldn't roll to his left and he would tilt his head.He tilted he head because his left eye could not look laterally so he had to over compensate for his eye

To help with his closed fist I had to work with him Daily on keeping his hand open.I would hold his right hand and arm down during play time to encourage him to use his left hand.We had to force him to look to the left and roll to the left whenever possible.Owen wears a eye patch, on his "good"-right eye,to try and correct his tilt in his head and correct his crossed right eye he has.

With Moebius Syndrome they can have mussel  tone problems which he def has.He wasn't able to hold his head up on his own til around 7 months.At the same time he started sitting up on his own.At 8.5 months he started "army" crawling.Our current skill we are working on is him being able to crawl on all four's.He has a difficult time putting his knees underneath of him.He tends to whine but it is getting better and better on a daily bases.

For me I have to remind myself that "babies" have a couple month range of when they do things. Weather they are early or have a physical delay. Today's appointment was encouraging for me because I was told he is right on track for all his "skills" even with being early.We now only have to go to O.T. once a month and P.T every other month to make sure he is on track.As a mom this means so much to me.I am told every visit that they can really tell I work with him alot.As difficult as this journey is/has been, I would never think of doing any less for for my kids.
I feel like I am leaving out alot of valuable info/tricks from therapy but as I remember I will try and do updates.

Really,the year is over??

In starting this I cant believe it has really been 5 months since my last entry!Still in shock.Everyday I have the thought "oh I need to blog that so I remember" but in lifes daily battle of time management I never can find the time.To say we are busy is a understatement. Im sure any parent with school age children can relate let alone adding a baby on top of that!

Where do I begin...Owen ,my sweet sweet baby boy, has grown into a full blown mobile baby.I can hardly believe it.Our doctors visits and therapy's are getting further and further apart so I now ENJOY him as a baby and not a medical specimen.At his O.T. appointment yesterday I was thinking back to how he was only 3 months old when we started going there and now at 9 months how far he has come. Just in the last couple weeks he has started arming crawling.I feel like just last week i was trying to get him to hold his head up on his own.What will he be 15 next week!!

Mackenzie is thriving in first grade.School was out for 3 weeks and she was begging to go back.She loves her teachers and enjoys school work(defanantly didnt get that from me).I can see her as a little adult.She is so responsible and always wanting to help with everything.
Bailey is starting to "get" school.She doesnt think she is there to play she is learning and learning fast!To see how much she has developed in half of the year makes me so happy!!
Soccer is about to start up for them again along with cookie sales just starting for Girl Scouts.As much as I want a "break", seeing them enjoy all their activities makes me a happy momma.

As for me I finally feel like im moving out of the "new baby" mommy stage.I feel like life is getting back to somewhat of a normalcy.this month is going to bring me back i think to a crazy point because we have all of Owens checkups with all his specialist.His O.T. and P.T. has gone from 1x a month back to every other week just to make sure he is staying on track.We also have a in home person that comes weekly.

Im going to be playing catch up with my blog so I will go into depth a little more in upcoming post about each of his therapy's.In doing that I am hoping to help others out there who would like to know exactly what we do in therapy.With that I leave you for the day to go crawl around with my boy.