Staying afloat

Wow what a busy couple  days,weeks months it has been!! School has started for Mackenzie and Bailey along with Soccer and Girl Scouts.Doctor appointments have come and gone for Owen and here I am in the middle of it all just trying to stay afloat.Most days if you were to walk into my house it looks like an explosion went off.Dishes on both sides of the sink,toys and clothes everywhere.How nice it would be to have a maid(hint hint).For now this is my life and while I feel like im just trying to survive threw it I cant wait for the day to enjoy it.

I was reading a blog post today from a blog i follow
http://moebiussyndromemusings.blogspot.com/

The first line is you dont have to be a "supermom"

I dont know why this effected me so much but i feel like he was talking right to me and I just started crying.

I am trying to learn that I cant do it all.Just going to all the doctors apt and test that we have had to do is draining not to mention trying to be the housewife and mother that my family needs.The last couple months of Owens life has been challenging to say the least and now that we know he has Moebius Syndrome I feel like the Journey is just begging.

While writing this I am getting the feeling like i need to defend myself and I hate that feeling.I want to put out there that I  feel so blessed to have my son and I know what he has isnt life threatening.This is a journey that we are on and YES the 3 doctor appointments a week, that are sometimes an hour away,the hospital stays,the test and the therapy are all taxing on me.I feel like im being taken away from my family and that its not fair to them.  Part of me doing this blog is so I can vent,cry,laugh and be honest about this whole process .So here it is IT SUCKS! But will it always suck,no, and that is what keeps me from going nuts.

I want to also say a big THANK YOU to all my new friends at Courage to Smile,that I have made threw this process.I found a great group of people with Facial Palseys or parents of kids with FP.Sometimes its nice to just talk with others that are going threw the same thing.Here is a link to the website.

http://www.facialnervepalsy.com/

There's all kinds of great info and resources there:)

Today has kind of been an emotional day for me.I feel like everything is finally clicking that this is real and this is how life is going to be.It started at the ENT doctor today while filling out yet another form for the doctor.Listing all the things wrong going on with Owen.I realized that this is forever.In his short 3 1/2 months I already have to use the "extra" space on the page to write everything.ENT checked his ears and there was no fluid.It was the hope that he DID have fluid that needed to get drained and that is why he failed his hearing test.With there being no fluid he still has to re take his hearing test but the outlook is that he will need to have hearing aids.I dont think it registered at first.I looked at the doctor and was just like "oh ".As soon as I left I cried selfishly for myself and then as the day went on I have cried for him.Today I also got my packet in the mail from the Moebius Foundation (again insert tears)This is real and this IS our life.I think any mom can relate when i say you just want a happy healthy child.And yes Owen is happy and healthy he still has medical issues.I want to protect him and shelter him from the world.I never want him to go threw any type of ridicule or bulling.

For now I will try to enjoy what little time I have with him being a baby and keep trekking threw the medical maze.Hopefully I can post some pics in the next couple days.Tomorrow we have follow up with the tummy doctor,bailey goes to the dentist and soccer practice.Sounds like a starbucks kind of day:)

Adventures in Audiology

Today was Owens hearing test.We needed to do a repeat test from the one he had as a newborn in the hospital.According to the tech at the hospital the first day he didn't pass then the next day he barely passed.Which today i found out he probable didn't pass at the hospital at all that they just dont want to be the ones to tell you your child cant here so they tell you they pass but then to follow up later with a second test.


The test today was a little bit of a challenge because Owen had to be alseep.For anyone who has to put your child to sleep you know that this isnt an easy task.As much as Owen sleeps, today he just did not want to go to sleep.It took almost 45 min of rocking,nursing and singing.Once the test started it was challenging because he is and has been, congested since birth so for the tech to get the info she needed it took 2x as long.


Now for the result.His right ear has mild to moderate hearing loss and his left ear(side with the palsy) has moderate hearing loss.One ear drum moves and one doesn't.We are to follow up with the ENT and see if he just has fluid on his ears.If so it needs to be drained.Once we see the ENT we will have to go back for a second more in depth hearing test.One good note tho is it isn't nerve related.Also the ENT should be able to address his congestion problem.


Im finding out with every visit I go to they all seem to think all his problem are related and it points more and more to Moebius Syndrome.From the choking,gagging,spiting up to the hearing,eye and facial palsy.We will know alot more after his MRI.Also Today we were referred to dysmorphology to look into it more.So we add one more doctor to the list.


I cant say enough how incredible the group of doctors are that we now go to.Every person i see has SO much information.They all interact and work with each other and get you to the right doctor that you need to see.It is making this process a little bit easier for me.


Upcoming adventures are O.T. on Friday, Gastroenterology on Monday and Reg Pediatrics on Tuesday.