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.

Three Months of Joy

Our handsome little man is 3 months old today!! He is growing more and more everyday and I am so thankful that he is here.I couldn't imagine our family without him.He can now hold his head up,is cooing at us, smiles and kicks all the time.A recent purchase was a bumbo seat which he loves.

Now don't be fooled.This IS his happy face:)
Taking care of a baby again has been an adjustment but seeing how happy the girls are to have a little brother makes my heart happy.This momma feels so blessed with her family and life she has.Today I am giving thanks for all that I have and looking forward to watching my kids grow!

Got GERD?

The last two days have been filled with doctors appointments.Since we need to be seen as soon as possible we don't get to choose where we see the doctor.They have 3 offices(San Diego,Escondido and Murrieta) Unfortunately almost all of Owens appointments have been in Escondido.

Mondays visit was with Dr.Garcia the Gastroenterologist to talk about his tummy issues.Owen has been painfully throwing up since birth.And when I say throwing up I mean PROJECTILE  vomiting all over the place!It has not been a fun thing to deal with.I switched from regular burp clothes to kitchen microfiber towels so that I could mop  up his mess.Along with the throwing up came endless amounts of crying,burping,gagging,choking,congestion and over all fussiness.Now let me just say I know he is a newborn!But this is not normal run of the mil crying this is "mom im pissed,i don't feel good" cry. This momma was losing it a little bit.

He officially was diagnosed with GERD about 3 weeks ago.He has been on Zantac that seemed to help some but he is still a fussy little guy.Dr.Garcia switched his medicine and we will be starting it tonight.She also wants him to get a Upper GI just to check and make sure everything is ok.He has already had an ultrasound of his tummy but she wants a better look.We will follow up with her in about a month.

As for today's visit it was thankfully here in town with his regular pediatrician Dr.Paik.I adore her.I love the office and I love the staff there.They have all watched Owen grow in his short little life and love seeing him.His appointment was to follow up on all his visits so far and to look at future appointments.Not much to report other then his stats for 12 weeks:
Weight: 13lbs 4 oz
Height: 22.5 in
He is in the 54% for Weight and only 7% for height.

Mr.Smiles

This is officially the first pic i have of him smiling!!We just love our little pirate man and I am so happy to share his smiles with all of you..

This weekend started off great with a Movie in the park.Our city does a Movie in the park on Friday nights in the summer time.They have games for the kids before hand and it is overall just a great time to spend with family.

Owen loves to be worn in his baby sling

As the night time came the girls had to snuggle up to dad to get warm

Next week i think we will dress a little warmer:)

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.

The Art of making Laundry Soap

A couple weeks ago I came across this blog that showed you how to make your own Laundry soap.So I decided I would try it.It was so inviting-576 loads of laundry for roughly $6!!!Seeing as I spend around $20 a month to do 96 loads I was pretty darn excited.My biggest concern was the cleanliness of the clothes and the fading effect.To my surprise after some research it actually helps save your clothes and makes them brighter.

First we will start with the

Ingredients

1 Bar of any kind of Soap ( I used costco brand)

1 cup of Borax

1 cup of Arm and Hammer Super washing Soda

A big pot that holds more then 2 gals of water

A grater

A funnel

A long spoon

2 Gallons of of Water

2 Jugs to store Soap

First start by grating the soap into your pot

Add 1 Gallon of water and let cook until soap dissolves

Once soap is dissolved add your Borax and Washing soda

Bring to a Boil.(It will start to thicken.)

Turn off heat and add the second gal of water.

Stir well then funnel into your Jugs.

As it starts to cool you will see it thicken more and more into a gel type consistency.Turning into its final stage around 24 hours.I use around a half of cup per load and it cleans great! I have a HE front loading washer and this soap works great for it because there are no suds.What I have learned is suds dont =clean;)

Also one last tip is make sure and shake your soap before you use it to make sure it is well mixed.

**I have read that you can add essential oils for smell but i haven't tried it yet,with the above recipe it leaves no smell on your clothes**

Our New Life

Today was a day filled with stress,answers and prayers.We had an apt with ophthalmology today.All day I couldn't help but think that my little baby boy could be blind.After getting wrong directions and taking a 10 min detour I finally made it right on time to the apt.While I was filling out papers another mom offered to hold Owen for me which was such a nice thing.I got to fill out papers with no screaming baby in my arms.


Sitting there in the room all alone wondering what the outcome was gonna be was so hard.My poor baby had to get eye drops every 15 min,which he hated,for a little over an hour.Finally it was time to see the doctor.I was greeted by a very casual looking man with a thick Irish accent.He right off the bat diagnosed Owen with a 6th and 7th nerve palsy.Informed me that he wasnt blind just a little far-sided.He said Owen could have had a mini stroke or have Moebius Syndrome.Some of the other notes were that his left eye only moves in one direction and that in a couple years he could do surgery to correct his eye.He ordered a MRI with contrast and I was to follow up with him a week after the MRI.


Finally a doctor who knew what they were talking about.As a mom you know when something is wrong with your child and for the last 2 months we have just been brushed to the side like there was nothing wrong.In my opinion it is purely because they just didnt know.After some of my own research I am finding how rare this all is.If it is Moebius Syndrome its something like 1 in a million. There still is a possibility that this is JUST nerve damage and that it will go away on its own.(im praying for that outcome).If not he will later down the road have surgery so he can smile on both sides.


The weeks ahead are going to be a little hectic with all the appointments we have to go to...MRI,Gastroenterology,Neurology,OT,follow up with his Pediatric doctor and Ophthalmology.All this along with the girls starting school in 3.5 weeks.
I am so incredible THANKFUL for finding the childrens group that we have and to have doctors that are so involved in my child's health.


So for now I sit with my little pirate man and still think he is the most perfect baby i could ask for.

Lets Back this up a bit

After alot of days of saying"I want to start blogging" Here I am.My and the keyboard letting my thoughts flow:)


I want to try and back up a bit to the start of Owens precious little life.I am trying to document all the things that are happening in our life.So here it goes.


 At 33 weeks i went into preterm labor.I ended up in the hospital for a couple of days.It was miserable but i got threw it.I was sent home on a medicine called procardia that I was suppose to take every 3 hours for the next 3 weeks.It was a terrible medicine.I felt like SHIT! But anything I could do to keep my baby in there I would do.In those 3 weeks I wasnt allowed to do anything but get up to go pee.I am so incredible thankful to my husband and friend jen for stepping up and taking care of the family.It was such a struggle for me to give up control of MY house but there was nothing I could do.Also at this time the girls were in their first season of soccer which I had to miss out on:(


 I made it to 36 weeks(right on the dot) We got to the hospital at 1:30am I was checked and was at 4cm and 80%. I was told to walk for 2 hours and see what happened.After 2 hours i only changed .25cm but they decided to keep me.This is where the nightmare for me began.....being only 36 weeks I was told(after being admitted  there was nothing they could give me to move along labor.All i could do was walk,so thats what I did for basically the next 36 hours was walk and squat and lung my way down the hallway of redlands community hallways.I was begging for them to break my water and give me pitocin but no one would finally on day 3 my new doc broke my water gave me pitocin and  the show was finally on the road.I opted for the epidural and waited for my little man to come.At 8:10pm I felt like pushing and at 8:23pm after 2 pushes he was here.


From that first cry we noticed something wasnt right.He only cried out of one side of his mouth.No one said anything tho.He checked out perfect they said and sent us off to recover.Though out the night i noticed one eye didnt open and he didnt really cry with his mouth open at all. Just a muffled cry.He was having issues latching but nothing too serious.the next day the pediatrician said he noticed so asymmetry in his face but not be worried he would be fine and it would go away in a week or two.At his follow up with his reg ped a couple days later he said the same thing.I never really thought too much of it cause they were making it no big deal.


A week went by and he woke up with a goppy closed eye.I immediately took him to urgent care.the told me no big deal but took a culture of it anyway.i was told it was more then likely a clogged tear duct and sent on my way with some eye drops.The next week things went from bad to worse and this is where i will leave you for the night.The next recall of Owens life is gonna take me a while to write so night night for now

Owen Christopher Johnson born 4-30-2011  6lbs4.5oz and 18 in long

The land of Bed and True love

Along with pregnancy I also get to enjoy be stuck in the land of Bed.Yet again I was in bed for 3 days due to the flu.After a long day of throwing up I finally decided it was time to go in to the urgent care.I needed to make sure that Owen was gonna be ok.I sure did feel him moving and kicking a bunch so I didn't worry to much but just wanting to make sure.They tried to turn me away because I was further then 24 weeks pregnant but thanks to my loving husband pushing for Iv's they took me back.Two bags of fluids and two meds later I was sent on my way to sleep off the rest of my sickness.

Being a stay at home mom and main care taker of the family needs, I have a system.It may not be the most organized or timely system but it is what makes this family function.To be sick and not able to move adds stress due to you HAVE to give up that control and have others help you.In my case my husband.For me this is true love.To have him get up without hesitation and be the care taker is amazing to me.Always there by my side making sure me and the baby were ok and that the girls were taken care of.Little things to show his love even while im sick makes me appreciate that man that he is.I am grateful to be married to him and even more grateful to have him as the father of my children.

Recipe of the day

Since I am doing this Get fit challenge I thought I would post a recipe for some of my homemade Protein bars

What you will need:

3 1/2 cups rolled oats

1 1/2 cups dried milk

1 tablespoon cinnamon

1 cup lite syrup

4 scoops protein powder(i like chocolate)

2 large egg whites or 1 egg

3/4 cup orange juice(i use light o.j.)

1 teaspoon vanilla extract

1/2 Cup Mini chocolate chips

Start by preheating the oven to 325 degrees. Line a cookie sheet with waxed paper, or spray on some non-stick butter flavored Pam spray. In a large metal bowl, mix all the ingredients until the oats are well coated. Spread the mix onto the cookie sheet Bake for 15 minutes or until golden brown (i cook for about 25 min). While still warm, cut them apart and allow to cool before wrapping. The bars can be stored airtight at room temperature for up to 2 weeks.

Get Fit challenge

I am linking up with{shutter}mama and starting a get fit challenge.Mind you im 24 weeks pregnant and it will be modified but I need to get these legs of mine toned up.Once this baby boy pops out it will be summer time and that SCARES me.I am a couple days late but here is my post that is suppose to be from Sat.



Current weight: 148lbs Height: 5'6.5"(i have to add the half in. lol)
Fitness challenge for the week (starting Monday): Walk 30 mins daily (M-Sun),along with 25 squats and 25 lunges
Food challenge for the week:ONE cup of Juice a day.Im slightly addicted!
How well did it go?: Just starting off so we shall see
Failures and slip-ups: Again just starting off but no Juice so far 
Weekly Challenge wisdom: Every time you walk in your kitchen do 5 of your exercises...i.e.-i would do 5 squats every time i walk in the kitchen
Advice to other get fit members:If you slip up its ok keep going.


Your self portrait:Again I am pregnant so my belly wont look like this but this is me after 2 kids already.I hope this last baby doesn't mess me up to bad:)

Come join in and link up



   

Being Thankful

Today was a day that I can truly say I am thankful for many things.First I am thankful for my husband to be alive and well.Sometimes in life I think we all to often complain about too much little stuff and don't realize all the joy in things.It isnt till you are faced with life and death situations that you realize how small we are in this world.How precious life is and how it can be gone in a matter of secs.
My world revolves around my husband and there is such a deep love for him, I am not quite sure there are words to express that , other then I would be lost without him.
Today I got a call that makes my stomach drop just thinking about it.When you are a spouse of an epileptic you are always waiting for "the call" that once again they had a seizure.Thoughts just get scrambled and you heart races because you never know what the outcome is.The reality of a call that you lost someone due to a seizure is very real for our family and that is the LAST call I would every want to get about my husband.
So today I say thanks once again to my brother in law Kevin, who unfortunately has been with my husband many times during a seizure, I thank him for saving his life and for bring my husband back to me safe and sound.
I leave you with the thought of being grateful for all the things and people you do have in your life and to remember to not sweat the small stuff.

Dear Laundry day

I have a love/hate relationship with laundry.I can go a couple weeks without doing laundry,which i LOVE, but HATE the day when I finally have to do it.


Todays has already been a great day, I woke up feeling good.No more pain in my back all the time.It now just comes and goes threw out the day.I feel like I can go back to normal mom and housewife things.I never thought I would say that cleaning felt good to do but today it feels great.So for now I leave you with the thought of doing 9 loads of laundry and feeling great about it:)
Have a peaceful day!

Finding a smile

Today has been one of those days that I have struggled with having a smile.Being only 5 months pregnant and not being able to stand,walk,sit or pretty much move in anyway with out being in pain is pretty darn frustrating.All i have to say is this sciatic pain is not my friend.While sitting here in a distraught state this evening I decided to go threw old photos to try and organize them. While doing this I couldn't help but have a slight smile on my face,I guess your kids can do that to you.Two stood out to me so much.When I came across them nothing but pure happiness came to mind.
My baby Bailey and her Best Friend Glowie.

This is my Beautiful big girl with my amazing cousin.Both bring Joy to my life in so many ways.

A mothers Love

Todays blog is my very first photo challenge.It comes from Jhen over at From Here to Eternity!
The challenge is something that you are in love with.
For me It is my children.I am in love with them and couldn't imagine my life with out them. They fill my life with so much Joy and Laughter.This photo is of my oldest daughter Mackenzie on my first day with my new DSLR. No Edits or special setting just on auto.I hope to one day learn my camera:)Hope You enjoy!