Inspirational...

Hi everyone,
I have some interesting Spina bifida things I have found and also some more great pictures I want to share.

But first quick update for our lil Emma Lou she seems to be doing much better after being on her anti-biotic's for her UTI. Although a little fussy because of her teeth but for the most part in good spirits. Next week we will do her 6month pediatrician visit and a follow up appointment for Orthopedic so cross your fingers that the Dr. will say she can start wearing her shoes just at night.

So this is an article about a women who has Spina Bifida and her goal is to spread awareness and get support to help fight the cause.

So please check it out!
http://www.examiner.com/spina-bifida-in-orlando/born-for-the-cause

The next thing I want to share is a guy named Aaron Fotheringham who has Spina Bifida and is in wheel chair but that hasnt let it stop him from following his dreams.
Check it out its pretty neat!


Here's some more great pictures....
Payton and his partner in crime


Swimming..

On a Roll....

Lets keep the good news coming. Emma is doing good with her new shoes no bruises or red marks. Our Physical Therapist showed me some things to help her when her shoes are off. She will be wearing her shoes 23 hours a day for 3 months then we move to just at night and nap times until she is about 4 or 5 years old. The doctor did say that this is the most important part she needs to wear her shoes or this problem will come back and we will have to start all over again.


So last Friday she had her Urology appointment and ultrasound. Which I will admit I was a little apprehensive about it because I was afraid something unexpecting would come up. Well turns out the appointment went great. The doctor was confused as to why we are cathing her based off the information he read from her appointment in San Francisco. He thinks she doesn't need to be cathed, so he wants to do more testing (which is the same testing they did in SF) to see where she is at. Nick and I already talked about this before she was born if we know she will need cathing later in life then it only makes sense to do it from the very beginning. So if the doctor still thinks she will need it later then I will continue cathing her.



So one of the Spina Bifida Moms I am friends with on facebook had posted about her two year old son starting Hippotherapy. Now I had heard of this therapy but had no idea what it was called. So I was able to do some research. For those who do not know what Hippotherapy is its a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes by ridding a horse or mule.



How it works is the horse's walk provides sensory input through movement, which is variable, rhythmic, and repetitive. The movement responses a similar movement to humans and patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the patient, and then utilize this movement in combination with other treatment strategies to achieve desired results. This therapy has huge results with all sorts of medical conditions and especially people with Spina bifida. I talked to Emma's physical therapist about it and he said its great and highly recommend it. So From what I found there is only two places in the valley that provides the treatment and I will have to find out if our insurance covers it. At least I have plenty of time to figure out how we can get this for her.

Heres a video I found of a little girl using the therapy for her Spina Bifida

http://www.youtube.com/watch?v=lxXsbiRBqNg
PS THIS IS OLDER POST I FORGOT TO POST....

YAY for 6months!!!

Our Precious little girl is 6months today! She is everything a mother could ever want and we are so thankful to have her.



Emma will finally get her cast off for good tomorrow and get her new shoes, and this little girl will finally get a good bath!! This week is exciting for us because we get to see My Lita and Grandpa (my dad's mother) and she will be meeting Emma for the first time and cant be more excited to see her. Also this week Nick will be taking Friday off and I am very excited to spend some extra time with him.


Also Yay for raising $200 so far for the Spina Bifida Walk-N-Roll and almost half way there. Wanted to say thank you To: Mark and Sherry, Suzi, Deborah Austin for helping to make that possible.

Sweet News....

This week's orthopedic appointment went good. It was amazing they took her cast off and her foot looked GREAT! When Dr. Segal finally (over an hour later) came in to do her new cast he says it's the left foot right, Me: I started laughing I said yep it looks great doesnt it. He says yes it does did I do the surgery already (referring to cutting heal cord) Me: NO!

So obviously he was amazed how good it looked, he said we are going to do another cast then next week when we come in could just be moving to the shoes (like the one's she had before) and she wont need the heal cord cut because it looks great!

Yay for good news!!! So overall thing's are going good and lets pray next week her foot is ready to move to the next step.

Thanks again to Star for giving me his name to go see him because he is truly a great

Spina Bifida Walk-N-Roll

I have enrolled Emma in the Walk-N-Roll. Our goal is to get $500 in donations and we have 3 months to reach our goal. I am very excited to help make a difference to help find a cure. Here's the link to donate money for Emma to help the cause.

http://www.sbaazwalknroll.org/faf/r.asp?t=4&i=428635&u=428635-297520543&e=3566144715

This year's Spina Bifida Walk-N-Roll & Picnic will be October 30 at Steele Indian School Park and its an all day event and we can not wait to participate. Here's the link for more information

http://www.sbaazwalknroll.org/faf/home/default.asp?ievent=428635&lis=0&kntae428635=469BBF052008406BB4E2004C90C8A3FB

I will keep everyone updated on how much money we've received in donations.

Trails and Tribulations...

Well I am extremely behind on my blog and allot of people keep asking me for updates and pictures so I apologize. Sometimes its hard for me to really think about certain things that are going on because I am frustrated or just upset about the outcome.


Really though things are going great, she is doing excellent and is truly a blessing to have in our lives.


So I left off talking about our first clinic appointment and we went back again for orthopedic which was just awful and the doctor spent a whole 5 minutes with us and said Emma has little to no muscle activity in the top portion of her leg and we need to do a series of cast to correct it and if the problem still continues we will need to do surgery which could actually take function away from her. This appointment left me so upset, so we came back the following week to get a new cast

put back on and the doctor decided the foot looked good and we were already going to move to the Bar and shoes. At the time it was exciting, our first weekend with these shoes where just awful couldn't get them to stay on for the life of me so I decided to take her in and see maybe they need to be refitted or something. Turns out they just needed to be much tighter I had the Dr tighten them and left them on for 23 hours like they told me to and when I took them off there was a huge bruise on her heal and it was blue. So at this point I was done time to find a different doctor because I just felt so wrong about everything that was going on and I really disliked the doctor. A mom I meet on a Spina Bifida forum lives here in the valley and see's one of the best Orthopedic doctors and referred me. Last week was our real first appointment with him and I have to say it was so refreshing to finally find a good doctor and feel good about the care she is getting. So we are going to start over with the whole process she got a cast and she should be doing this 4-6 weeks, then Shoes with the bar, and lastly AFO which is costume brace.

He seems to think there are problems within the clinic and came here from Philadelphia to work in the clinic and didnt go into details but something happened they didnt want him. Which is interesting since he is an important part of the Spina Bifida association.Anyways he thinks the doctor we saw there didnt do his job right and that is why she had problems with the shoes. So it was a good thing we went to a different doctor. Its a scary thing to think though that what if we stayed and I just listened to what the doctor said.



During all this is going on Emma has been receiving physical therapy to help her foot. We are doing once a week for an hour, which had been going good but since Emma had a cast put on this week we are working on trunk exercises and her fully extending her arms while on her tummy. We might skip some sessions and bank them up for when her cast comes off, and do twice a week instead. As far as everything else Emma is doing great but I think she is getting several teeth in and has been fussy and doesnt want anyone except Mom. So it has made things interesting.
Hope you like the pictures and I will try to keep everyone up to date on whats going on

Happy as a clam...

Start this post of a cute picture..

So I will admit Thursday was an extremely frustrating day for me. Our Clinic appointment was Thursday, and we have been waiting for this for two months now. Our appointment was supposed to be an hour, turned into almost three hours later which I had Payton with me. Luckily my Mom was there because it would have been a disaster. The first hour was the nurse telling me about Spina bifida..which was like ok my daughter is now almost three months I have known about this at 19weeks you dont think I know all this already! It was like she was quizzing me it was weird asking me questions about it seeing if I could answer them. So finally we get to where she does her exam of Emma. She weighs now 12.4 lbs and grew is at 23 1/2 inchs which is amazing because since she gained 2 1/2 lbs and 2inch from the 7th. She is at the 50 percentile all the way down including her head.
So since she has chiari she was telling me about symptoms and I mentioned to her about her problems with gagging and how she will have moments where it looks like she is breathing really hard. She said to watch her when she sleeps she can have periods where she could stop breathing and turn blue. Since chairi can not be reversed if her symptoms where to get really bad there is a surgery which is a decompression of the brain stem. Then there is her poor little left foot the nurse was concerned it could be tethered cord already which doesnt usually happen this early. We have an appointment scheduled on Friday with the clinic orthopedic surgeon and hopefully he will be able to give some more insight on whats going on. So please pray she wont need surgery and its something like physical therapy and brace will help fix. So after the nurse left its procedure to see the social worker. So her first thing is says is I see you have private insurance, I was like yes why? Well the clinic was setup for kids on medcaid and not all private insurance cover the clinic services. She said I dont want to discourge you to come here because we want Emma here, I said well we do to but if our insurance wont cover it then we wont be coming here. Okay why is someone telling me this NOW! I have been waiting for two months to find out now that we may not be covered. So when I got home I spent two hours figuring if insurance covers the clinic, THANK GOODNES IT DOES! Because what a waist of time when I could have shceduled individual appointments and I am sure she would have seen all doctors already so I was irritated to say the least.

And on a happy note AzEIP/Early intervention came out yesterday and it went great they really informative and super nice. So for development she is where she is suppose to be and physically they said she has great rang of motion and she bears weight on right leg and foot its just the left that the concern is. I did explain what the nurse thought she before they can help with the left foot we need to make sure its not a tethered cord because you can do serious damage if it was. It was extremely refreshing to have someone tell you how well her range of motion is and I know our little girl will be walking. Which makes me Happy as a clam : D

a small side note Payton had a wonderful Birthday and thank you to everyone for his Birthday wishes her are some pictures to share..
He was so excited for this cake I spent forever making and didnt even try a bite..

So serious..