Friday, December 23, 2011

Santa is checking his list....

So I forgot to post the kids Santa pictures, and they turned out exactly how I thought they would. Poor Emma did so good considering we had to wait an hour by the time it was time to see santa she was done and ready for a nap. So with that being said this is what you get : )

And this..Poor Santa!

and heres the "TUDE"

But if we rewind a little bit we get this super happy girl..

Doesnt she make you think of Cindy Lou Who in this picture, and then of course my super handsome little man who was super good and so happy to see Santa.

Wednesday, December 21, 2011

Totally AWESOME!

So yesterday Emmas therapist introduced her walker to her and she was a little afraid but after she left she was checking it out for the rest of the day. This morning she wanted to try and it just came natural.

So here's the video after the third try and getting tired but not wanting to quite is Emma trying to walk with her walker! And dont pay any attention to me sorry in advance!

Tuesday, December 13, 2011

"Please Forgive me"

Wow I am so behind on the blog and I am determined to finish this entry no matter what! So since my last post Emma got her cast off and two days later her foot swelled up and got super hot and was all signs of a break...well to make a long story short I FIRED HER last doctor so to speak. I am just so done with him so we took her to a new doctor to find out she did have a fracture and so Yep she got yet another cast but dont worry she already got it off after Thanksgiving. Last week she got casted for her AFOS finally "YAY"!

We go next week to pick them up, and last week we also had her IFSP for the state which is an assessment of what she has accomplished and what new goals we should be making and if their are any other concerns we might have for her. So we have added Speech therapy to the mix she barely qualified. She says about 7 or 8 words consistently and knows 3 signs so she isnt completely behind but I think she will get there in her own time. Speech therapy will just help her get there faster which will be good.

Unfortunately Emma has been experiencing some really weird things and at first I didn't want to think to much about it but it is starting to worry me. So I want to say it started a week ago when she did it the first time where she threw up at night and I had no idea until I came into get her in the morning. When it first happened Nick put Emma down for bed with a bottle of milk (which I never do) so I just thought that was the cause of it because she's not used to it.

Well about 4 days go by and we put her down for bed and she got so upset because she didnt want to go to bed she threw up again. So this time we thought ok she just got her self so upset she made she self puke. Then again 3 days later last Friday afternoon Emma woke up screaming from her nap and I go in there and she threw up and continued to throw up. So now I am thinking ok maybe the milk? But very weird because just out of no where the milk is now bothering her?? So Friday I dont give her any more milk and try to give her light things on the stomach but she is still acting fine like nothing is going on with her, but Friday night she woke up again crying and was sick all night so then I thought it must just be a bug because she was better later Saturday afternoon. So she is totally fine again nothing going on then Sunday night she throws up again. and then last night she woke up 3 times crying like she didnt feel good. Well back tracking a couple of days we where all siting on the bed and noticed her itching her neck. It was was red from her itching it and it was where her shunt tube is, so I tired not to over react and just watch her she did it twice and havent noticed it since.

So last night I was sitting in bed and started thinking well this could just be acid reflex or something along those lines but then I realized last time we thought it was acid reflex it had to do with her shunt and when we fixed that it went away and she had no more tummy problems. So I am calling her neuro surgeon today to see what they think and if he can see her. For one thing I am sure of is she is not sick this is NO STOMACH BUG.. so now we just have to figure out what could be causing her to get sick.

Tuesday, November 1, 2011


Well these last two weeks have been long, and I am so glad tomorrow she will be getting this cast off! On top of the cast that has really made her mad and frustrated she is getting a molar tooth and two other teeth in. So she has been cranky to say the least.The last couple of times she had a cast I never got a bunch of looks I think because she was still in the infant carseat so not allot of people noticed but you wouldn't believe the looks I get when they see she has a cast. I can't help but to just laugh because people are clueless and have no idea but also the fact that they look at me like I am an awful Mom because my daughter is in a cast. I have had some really nice people ask what happened and I explain she has Spina Bifida and why she has a cast. I have also had people that like announce it to everyone Oh Look she has a cast she broke her leg, every time I like to say No she didnt and then they get quiet and dont ask what happened. The only thing to do is just laugh oh well!

She tries to stand all the time, so I am so excited for her cast to come off and get her new AFO's so we can really start working on standing. I can just see it in her where she is so determined to stand up and move just like crawling. So I have such high hopes.Tomorrow will be her appointment for the cast to come off and then a week from now she will have the AFO casting. I will post another blog next week after those appointments.

Last night was allot of fun. Payton of course had a blast and there was allot more kids out this time then last year. Last year I bought only a couple small bags last year and had left overs but this year we bought a giant bag and where cleaned out.

Tuesday, October 18, 2011

She is A O.K.

So today Emma had her heal cord procedure and it went pretty smooth. Luckily Nick was able to leave work for a little bit which helped allot! My poor little's is really trying to get around with the huge and very heavy cast on her :( But thank goodness she is extremely determined and is figuring it out. Let's hope this time we wont have any problems with the cast slipping.

She will be in the cast for the next two weeks, I was a little bumbed it will still be on for Halloween but I think we can make it work. After the cast comes off we will be getting new AFO's for her.

Here's are most recent pictures we went to the Wild west Festival this weekend which most of the pictures are from

Thursday, October 6, 2011

Spina Bifida Awareness Month

Wow here we are again another year and its Spina Bifida Awareness month. It really is an important month its unfortunate that they cram so many in one month that are all very important that shouldn't be over shadowed by another. Spina Bifida is the second most common birth defect 1 out of every 1,000 newborns in the U.S. are born with Spina Bifida that's an average of 11 pregnancies per day have Spina Bifida but so many people have no idea what Spina Bifida is. Yet there are still so many doctors out there that have such a horrible out look and paint such a horrible picture of what the outcome will be. This has been the biggest thing for me from the vary beginning and I have numerous stories of this, and doctors encouraging to terminate the pregnancy. I get so emotional about this because I feel like so many are so ready to not gives these kids a chance at life. Every person I have come into contact with love there life, granted they all have challenges but still love life. I think the biggest thing for me that I could tell everyone is not about prevention but that there is hope and Spina Bififa is not a death sentence. Every person has an amazing story of trials and tribulations.

Our story is our daughter was born with Spina Bifida and we where told She will never walk, she will have no feeling below her hips and she will be mentally handicapped. They couldn't have been more wrong. She constantly proves her doctors wrong, she is amazing in every way. She is so smart, loves to color, loves to dance and just is the goofiest little girl. She always has a smile on her face. She consontantly touches everyone she comes into contact with, and everyone can't help but to say how amazing she is.

Please Help spread the word about Spina Bifida awareness month Thanks!

Wednesday, October 5, 2011

Much needed update...

Geeze I have been slacking hard on our blog. Things have been going good, busy but good! The last month we have been working extra hard to get Emma at a neutral position on her foot. She has been really tight ever since her shunt surgery due to her being sick for so long and no therapy is why she got so tight. So we were really trying to avoid surgery of course. So yesterday was her orthopedic appointment to see where we are at. Now he said she is allot better from when he last saw her but we really have to try hard to get there. PT gets her completely neutral when he leaves but soon after she starts to get tight again.

So we came to a good compromise I think.. because previously he was talking having to put her under to do the heal cord lengthening and another additional procedure to help her from getting so tight but I just explained that she was very flexible previously to everything with her shunt. So he can do the same procedure he did a year ago for the heel cord lengthening in office, which they just give her a shot on her foot and make a small incision in the back of the heel. She will have to have a cast again but this time he said we can do just 2 weeks instead of 6 weeks like she had last time.

So I feel good about this I think it will be a good thing, we are going to get her new AFO's so she will finally be able to start standing again which is so exciting because she really wants to. She try's pulling herself up on everything all the time. She will even try pushing herself up from the floor but can't stand up because her poor foot is turned in. So before we know it she will be trying to walk and I can't wait till we get there.

Monday, August 22, 2011

Just one of those things..

Well things have been crazy since we have gotten back from California. Everything had been really calm and then all the sudden its crazy, but hopeful. I can't remember if I had mentioned in previous post that Emma's left foot has gotten real tight and I had been waiting for an Orthopedic appointment for her for the last month to have him check it out. So we go on Wednesday and he seems to think if we work harder at stretching her then it will get better but wanted to do a week of having a cast on her foot to see if it will stretch her out. I asked him about her heel cord and if that is an option and he said since he has done it once before it has developed scare tissue so she would have to be put under to do this but felt very confident that we can make this work with doing a cast and stretching it more. Ok so we go home with a cast and seriously 5 o'clock rolls around and I notice her foot looks like it had slipped a little so I mark it so I can make sure it doesnt slip and more and next morning it has slipped even more. I call the doctors office first thing and leave a message for the doctor. Then 9 am nothing yet and her foot has really slipped by this time and I email the doctor because he told me in our last appointment to email him if I have problems. So now its 10am and I was like this is crazy because I knew she was going to have horrible marks on feet. So finally I called demanded to speak to someone and was able to get her in. So we get there they take the cast off and of course what do they find those lovely marks on her feet again. UGH geeze so he says well come back in two weeks and really stretch her and we will see where we go from here. I was like was so no new cast? Nope her feet are to bad so we need to wait. What the heck I mean seriously talk about a huge waste of time, and now wait longer for a solution. So we will work harder at stretching but I can honestly say I am not sure how that is possible considering I do everyday and therapy 3 times a week but I guess its not enough.

This weekend we went to a birthday party and Payton got to go bowling for the first time and it was so cute and he had a blast! Here's a video...

Then the most exciting news is Payton is starting Preschool tomorrow!! Yay so excited and finally get to make friends and maybe even learn something. He is so excited, and the school is right across the street to it makes things easy. We are only starting off with two days a week Tuesday and Thursday 12-2:30 so it will be good!

Wednesday, August 17, 2011

Vaction with Grandma's

We got back late Tuesday night from vacation, and it was allot of fun! We got there around 4 on Saturday went out for dinner with my Mom's cousin and her family( which Payton had a quite of bit of fun with).First day we got to go to the beach and both kids just had a blast. It's funny because Payton forgot what it was like at the beach and we went last summer. We dug for crabs and found one and Emma played in the sand and of course Payton got knocked over by a wave.

Then our second day we went to Balboa island and had lunch and of course got chocolate covered bananas on a stick. Then got to ride the car fairy which Payton couldnt believe what was going on, and got to see seals. Then went back to Grandmas and went swimming which is always fun time.

Then Tuesday came it was already time to go back home, but our flight wasnt till 8:50 so we had quite a bit of time to hang out before we left. We went to the beach for the last time and to dinner and Payton went with Grandma by himself to see the tide pools and had allot of fun before we left. It was a sad good bye but lots of fun.