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.

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:)