Tuesday, December 14, 2010

This is just the beginning!

Emma figured she could move by pushing herself backwards! LOL she just started this today but I have a feeling she will soon figure this crawling stuff out!! Got to love it


Sorry bout the craziness around me.

Wednesday, December 8, 2010

I am just so "Thankful"

(Would you believe me if I told you I have been trying to finish this post for a week now, geeze sorry)
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I will be the first to admit that it is so easy to focus on the negative then the positive. This weekend made me take a good look at my life and realize I am such a lucky person. Being around family and friends, and actually spending some time with my husband made me think life really is good. More importantly sometimes I forget truly how blessed Emma is and how well she is doing. Sometimes I find myself comparing her to other kids her age and feeling bad for her. So this made me think I am just so done with feeling like this because there are just so many postives to be thankful for.
Photobucket Her foot is looking better and better and we will have these shoe's off at the end of December. I have learned to embrace the shoes knowing they are of course a helpful tool to a "Great" goal which is to walk. It's crazy to think that in no time she will be crawling around the house and how fast time as gone by. I just want to keep her little forever :)
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So I have good news to report that our little Angel went to see the Opthamologist on Monday and it turns out she is farsited but not concerned that she needs glasses which is awesome. As far as her eye drifting the doctor said to do an eye patch for an hour a day for six weeks. Last night we tried it for the first time, poor thing I felt so bad, you could tell she was trying to figure out what is going on. The patch is like a band aid and its for girls so one has teddy bears with glitter and the other is lady bugs with glitter. Of course Payton thought she looked like a pirate.
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Yesterday Emma decided she wanted to stand up grabbed my hands and just stood up! It was awesome so I sat her on the floor in front of her cube and she tried so hard to pull her self up to stand. Didnt get it because her feet kept slipping but great effort! Physical therapoist came yesterday its been 3 weeks since he's seen her and he was amazed at her progress since he's seen her for not having therapy. He said you know she really progresses well all on her own and said since she is pulling to stand he doesnt think she will need the stander. By her pulling to stand she is working those muscles on her own and way better then just using the stander. Which is awesome. She is also rolling around on her own and getting closer and closer to crawling. I had a dream last night that she was walking at her 1st birthday. I know that she is far away from this but I know she will get there and I cant wait for when it happens!!
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Thursday, November 4, 2010

Where do I begin...

Warning this post contains The Good and The bad....
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Well yesterdays appointment at Orthopedic "DID NOT" go the way I had expected! In fact it went so left field that I am still trying to get back. Our appointment was to have the shoe's come off and wear just at night, well Emma had to do an x-ray to see where her heal is at and the Dr. bring's the x-ray in and immediately I can tell something is not right with the heal before he says anything. So it took me awhile to understand why this was happening at what it meant. Soo.. he explained that her heal cord is to tight which is causing the bones in her foot to shift and obviously they where not where they are suppose to be. Which means to fix this she needed her heal cord cut. Before I go any further I was trying to figure what happened so drastic between last appointment and now. Well I guess nothing because they thought her foot looked great in fact if they didnt do an x-ray he probably still would have said take the shoes off and not even address the heal cord, but what really gets me is if he would have just taken the stupid X-ray when she got her cast's off then we would know this was happening.
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So the Dr says well we don't have to do it today I don't want to bombard you with all of this but she will also half to have a cast on for 3 weeks after. I asked him why he said its just procedure. At that point I wont lie I was very upset but figured well lets get it done and over with because this is more time and puts her behind from her goals and mile stones. So then I ask him where do we go from here after the cast he says she will have to be in her shoe's another month 23/7. I just was Like YOU HAVE GOT TO BE KIDDING ME!!! UGHH can she just get a freaking break I mean seriously because of these stupid shoes she cant hardly roll around any more and before she had the shoes on she was able to roll around.
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So yesterday she had her heal cord extension and they placed yet another cast on her and will be on for the next three weeks and will be taken off the day before Thanksgiving. And we will take it from there but from what I gathered from him he said she will need to get AFO's as well, which is interesting from last appointment she didnt need them and now she does. Just so frustrating sometimes but I guess just one step at a time..
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Anyways Payton had so much fun Tricker-Treating we got some good pictures before we went out. Poor little Emma was not to thrilled and got pretty fussy.
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My little Sheriff
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This was the calm before the storm hit
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Tuesday, October 26, 2010

Just You Imagine......

Those of you who receive this in email please go to the website so you can see the video!!

First and for most for those who don't know Emma stood up and is doing a great job at it. Looks like we need to get stuff for her to start pulling up on. Here's some pictures and video

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Look Mom!!
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OK so I found some more exciting things about Stem cell therapy, that I am so excited to share with everyone.The same mom who I had spoken to previously about banking Stem cells (really the whole reason we did bank) that was talking about trying to find a doctor in the US to do Stem cell therapy. I guess it turns out she took her daughter this year to China first which lead off with some complications due to her blood type and wasnt able to get the treatment that really gets the results because they had to use different cells but the mom said she watched all these other people getting treatment for other things and it was working wonderfully,
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and even though they had a problem (which from what I understand is very uncommon) would still highly recommend it.From some research I guess China has been doing Stem cell research the longest and has the highest percent of people who bank cord blood.Anyway's this mom found another place in Mexico who has been doing this for 12 years and they have had huge success as well. They just got back two weeks ago so I am anxious to hear how she does and her progress. I have her website I wanted to share as well as some articals that are great break throughs. As far as the US doing anything for Spina Bifida has not yet happen but they just started a trial therapy with children with Cerebral Palsy and have had "HUGE" results with this. So we will just watch and wait to see what happens and I am sure before to long there will be the same thing for SB.
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Here's some articals check them out, very neat!
http://www.fastpitchnetworking.com/pressrelease.cfm?PRID=30586
http://www.prlog.org/10517154-spina-bifida-patients-getting-stem-cell-treatment-in-usa.html
and here's the Moms blog I was talking about its got everything from her trips.
http://happydanismith.com/default.aspx
Also we are very excited the Walk-N-Roll is tomorrow (Saturday) which will be awesome to meet other family's. The walk is only 2 miles but they are having a Picnic afterwards and everyone gets to dress up they are having games and prizes for the kids. And of course Halloween is on Sunday which Payton is just dying to wear his costume for. Then Thursday we have Emma's Orthopedic appointment for her shoes to come off and just wear at night. I Will be addressing her getting some AFOS because there is just no way she can stand up without that left foot turning in and will create some problems with standing and walking. Also want to get her a stander which is similar to this
helps them get use to standing. I will update everyone with our appointment next week and share halloween pictures.

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One more thing the last post about the mom she decided to keep her baby. All I have to say is the Power of Prayer!!

Friday, October 15, 2010

Some thought's.....and much needed Prayer

Now typically I am not a person to judge and I completely understand going through a dark time in ones life, but something has hit me to the core and I am so deeply upset by it.

Now nothing gets me more upset knowing that people get misleading information about Spina Bifida which leads to a child not given a chance at life. Now where this is coming from is a Mom who is in the position we where in a year ago. Confused, sad, mad, and I remember all those feelings like it was yesterday. So with that said she came to our Spina Bifida online group, She was given an outpouring of support from all us parents. Questions answered, encouraging words. This journey is HARD, but it is so much more rewarding. She was open about being unsure about termination, she was given kind messages about why not to terminate, why all the women here did not terminate. But she is undecided whether her baby is worth giving life to. She told us she looked at our blogs, our children, and still was not sure her baby deserved life.

Now I wont lie this really bothers me an saddens me because Emma is worth all the pain and burden(if you want to call it that) of it all, but this is not what really got me so upset this women put a post on the board to please go to her blog to vote on whether she should keep her baby that has Spina Bifida or terminate. Now first of all why would she ask a group of mothers to vote for something that they clearly have already decided. And Most importantly anyone can vote and to have people help decided the fate of your child is disturbing to me on so many levels!!

Please pray that she finds the answer she is looking for because at this point thats all we can do. With that please read because it touched me!

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"

"This one gets twins. The Patron saint will be Matthew"

"This one gets a son. The Patron saint give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice.

Wednesday, October 13, 2010

8 month's and much More..

Well this week is allot for us. Emma turned 8 months on Monday the 11th, and Saturday the 9th was the day we found out about Emma's Spina Bififa. It was one of the worse days of my life, and not because I found out she had Spina bifida but the false information I was given and a grim outlook for her and that horrible push that abortion should be considered.

Looking back now she is such a miracle to be here with us and has proven that Doctor to be wrong about what she told me that day, and we are so thankful to have her as a daily reminder of god and the amazing things she will be able to do.

Yesterday she had her Urology follow up and it went better then I could have ever expected. During the Urodynamics the nurse went to go talk to her doctor twice which made me nervous thinking something was wrong. Well Dr.Ritchy comes in to speak to me and said that he is surprised to see how her bladder is working. Explained her bladder is filling up and when it gets full contracts and then voids like a bladder should. He wants me to start cathing only twice a day once in the morning and at night. I was told that you cannot do less its either all or nothing and he told me yes this is usually the case but in Emma's case she is voiding on her own. which is the same as cathing. Now I am sure your thinking why does she need to be cathing if she is voiding on her own, well he said since there are point where her bladder builds up high pressure (but again she voids when this happens) so its more so a precaution and we will follow up in 6months.

and more great news I had finished this post and Emma's physical therapist came and was totally impressed how well she did this week! For the first time she got on all fours in crawling position!!YAY!!! Step in the right direction, Payton was laying on the floor and she really wanted to get him and decided to get on all fours. It was very exciting and then we did some different exercises with pillows and them propped behind her and the physical therapist intised her with a toy and she sat up on her own!

Our little girl is on a Roll and couldnt be a better month to happen then Spina bifida awareness.

Also this month is Spina Bifida Awareness month

Thursday, September 16, 2010

Inspirational...

Hi everyone,
I have some interesting Spina bifida things I have found and also some more great pictures I want to share.
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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.
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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
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Swimming..
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Monday, August 23, 2010

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.
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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.

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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.

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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....

Wednesday, August 11, 2010

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.
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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.
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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.
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Saturday, July 24, 2010

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
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Tuesday, July 20, 2010

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.

Yellowribbon-Spina Bifida Pictures, Images and Photos

Friday, July 16, 2010

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

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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
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Saturday, May 1, 2010

Happy as a clam...

Start this post of a cute picture..
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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. Photobucket
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.
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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..
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So serious..
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