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:)

One in a Million

With the kids at grandmas and a big day ahead of us we headed down to San Diego for the night.Getting up early really isnt our thing so we opted to get a hotel room the night before Owens MRI.It was nice to relax and spend time just focusing on nothing but Owen.

After a good nights sleep we packed up and headed for the hospital.The check in process went very smooth.You get a pager and when each different part of the process needed you your pager went off.Ours was pager #49.I dont think I could forget because i just sat and stared at it waiting for it to go off.Thinking ok "now" ok well maybe "now" lol.And having the feeling of wanting to jump and run every time it did go off.

Everything went according to plan till we went down to the actual MRI and met with the anesthesiologist.She asked the same questions the other 3 nurses did but this time there was one extra question..."and he was full term correct?"   Ummm "no he was a preemie" I replied.Thats where the day changed from our plan of getting to go enjoy the beach and make light of our son having to be put to sleep,to us ending up having to spend the night.Because he was a preemie and was being put to sleep they had to monitor him over night to make sure all was well.There wasn't really a choice, he needed it done so we stayed.Unprepared,no extra clothes and unexcited to sleep in a chair.But as a parent you just do what you need to for you children.No questions asked it just come as instinct.

The MRI went with out a hicup. Although it did take a little longer then expected.Tyler did a great job of calming me down,reminding me that a few "extra" min was ok.The recovery room nurse was kind and understanding of our situation and broke the rules and let both of us back with him while he was waking up.Now this was a little weird not gonna lie.Watching him wake up and jolt his head and body back and forth freaked me out a little but he eventually woke up and ate and was my happy little guy.

Finally we got a room and Mr.Pirate went down for a nap.The next 15 hours I spent sitting in the Oh so comfortable (insert sarcasm ) chair staring at the monitor.I dont know what it is about hospitals but even when your non sick child is there it makes you feel like they are sick.He was breathing and acting the same way he does at home but having a monitor on him all night makes you stressed out with every little beep and alarm.

The morning came and one perk to having to stay at the hospital is we were gonna get the MRI results and he also got to have his Upper GI done that we had scheduled for next week.YAY no extra drive for me!!

The Upper GI went well.I got to go with him and it was cool to watch.He had to drink this special liquid and they watched it go down his little tummy.The doctor told me the results right there that he defanitly saw Owens reflex but that everything looked good.No damage to anything and his stomach was working normally:) That makes this Momma very happy.This will be something that does jsut go away!

Now for the MRI results.We got some good news that he didn't have a stroke and there were no tumors or cancers.His brain looked perfect.However he was missing his 6th cranial nerve and his 7th cranial nerve is underdeveloped.With that they believe he has Moebius Syndrome.I guess my feelings at the moment were just relief that he didn't have a tumor.As it has had time to sink in I just want more.I want more research and understanding.

Moebius Syndrome is a very rare disease and at the moment from my understanding and research there are a little over 2,000 people WORLDWIDE with it.WOW how do you take that in.Your child has a disease that they barely know anything about and chances of having it are around 1 in a million.We will know alot more with every doctors visit that we go to.Next week we have a follow up with the ophthalmologist and Neurologist.

If you made it all the way threw that post THANKS,I know it was long but i have lots to say.lol

I also want to thank everyone for their endless amounts of prayers.It means the world to me that you all are involved in this adventure that we are on.I look forward to educating my self and others about Moebius Syndrome and helping my little Pirate live a totally normal life.