A change in life has really made me do allot of deep thinking. After being in Florida for over two months now certain things have come up as a challenge for me in getting the necessary help and care for Emma and not as good as I thought it would be prior to coming here. The best thing that has come out of this is getting into Shriners and has lead me into the right direction but I find my self learning a new system all over right when I thought I had got it. Emma on the other hand was off tract just due to selling our house and moving. She is now doing good a headed back in the right direction. We have gotten her new HKAFO's which are a work in progress but defiantly going in the right direction and the difference is amazing. I did feel I got some what of a blow when I was told she would need these braces because we have been told in the pass that she doesn't need anything like it and she would build the strength up. What I have come to realize is she has been working on this for about a year and not allot of progress but she sure as heck would try, but it was always a very good outlook and keep trying. Coming to Shriners I had an extensive conversation with the Orthopedic doctor and the Clinic doctor about this and they said she could very well always have to wear a device like this to walk (meaning HKAFO's)which at that moment felt like a crushing blow because here I always thought that her prognosis was better then it was. So here I was being negative the whole two weeks waiting for her HKAFO's and her appointment comes time to get them we put them on and for the very first time she was standing so tall and strong. She was barely even hanging on, and I didn't even realize until that moment how tall she actually was. But even more importantly how wrong I was about being upset about something that felt so negative had actually turned into something so positive.
I have held in so much hurt and pain after finding out about the study that we participated in and how a you can have in utero surgery now and how it really makes such a difference. Wishing I could go back into time and change our outcome. I know Nick and I did everything we could and everything else wasn't in our control but now learning that what's really important is staying positive for Emma and not look back at the past but focus on our future and now that everything will work out all in the end.
Now with all that being said I have not given up hope and now how there are many surprising things to come from my little spit fire who is bound and determined to have it her way.
http://youtu.be/v018ruHBzGY
We did just go to Shriners yesterday she was fitted for a wheelchair this will help keep her in her new braces all day when she isn't walking around. Surprisingly enough I am excited because this will give her more freedom in places she cant go and that means this Mama doesn't have to carry her every where. She is extremely thrilled to say the least she tried out the Zippie Zone and moved around like she had done it before with a giant smile on her face..so they where nice enough to give us a loner mean while. To her much excitement. Payton thinks its the coolest thing ever and was excited because now she can go out side and play with him (ahh to cute).
We are all doing great and loving our new life in paradise!
Wow just a year ago Emma had learned how to crawl a year exactly she is walking all by her self. I cant even begin to explain how wonderful it feels to see her walk without me helping her. Here she was just a year ago..
Crawling for the first time
http://youtu.be/Q8S9-pWyS_o
and here she is today walking without any help!
http://youtu.be/KDRV7Eu_tYk
So now I have take her to cool places where she will want to practice walking I wish it wasnt so hot. She is still scared but once she starts walking the fear go's and she is loving it.
So after yesterday's bad news of surgery I feel like I should at least share the fun things this summer and some high lights so far. So for Nicks birthday I was trying to be as created of as possible and combine fathers day into it as well. So I decided to get a frame that fit three 5x8 pictures and have the kids hold letters that spelled DAD.
Which turned out pretty darn cute if I say so my self. The kids did so well, but of course I had to bribe them to sit there and do it. We got out there at 6am but after we where done we got bagel and doughnut.
Then the week following was the of course the most exciting because it was finally time for our vacation to Disneyland. Now the kids never watched the Disney channel before that and Payton has seen most Disney movies when he was younger but could careless so, let me tell you after this experience to Disneyland has completely changed them both!
Payton and Emma watch Disney channel as much as I will let them and Emma has formed a new obsession with Minnie Mouse its crazy she LOVES HER!
Now it was especially special because his Nana and Papa made the trip specially for Payton and his cousin because they turned five. So they both got special buttons that said it was there birthday and it was so cute because every person that worked at Disneyland would say Happy Birthday to them.
then of course Emma just being to cute not to share..
Then our family photo..
And now Emma's favorite princess Ariel, and she just loves her which is so ironic to me because she was my favorite when I was little.
and then Payton and Marry Poppins and he had no idea who they where but really enjoyed there conversation.
and then our fire works to conclude our night which needed on the happiest note.
After we got home I think everyone was still on a Disneyland high from all the fun we packed into two days. It was wonderful...lol after coming back to reality.
Some swimming pictures I took couple of weeks ago..
and then lastly All that swimming tuckered her out so much she feel a sleep eating her Pizza!
So I felt like it was time for me to sit down and blog. I haven't done it in so long mainly because I have been so stressed out that every time I tried to sit down and write it wasn't making any sense and I would just delete it at the end. So Just to in a nut shell the things that have gone on.
So in May Emma ended up really sick and her Dr didn't feel comfortable seeing her and sent us to the ER and we find out all it was ear infection, then the next day Emma's foot was swollen from her AFO and horrible blisters had appeared. They where so bad and we had several problems since she first got the AFO's that I was so fed up I decided we where going to go some where else and get a second opinion. Well that following Monday she had her annual review with the state and they said since she has had double PT for the last year we will have to cut that to just one hour a week. Which couldn't have come at a worse time due to the fact that she cant wear her AFO until her foot heals and until we get it fixed or a new one. So this was very upsetting because its just something else to set her back this is how she got so tight last time.
So anyways June I took her some where else that is suppose to be the best but the catch is its all out of network and of course having to pay for a whole new set. Which honestly isn't all that upsetting what was more upsetting was the fact that the women we took her to was looking at the old ones and explained why she has had so many problems. Basically in a nut shell she said that her AFO's are the reason why she isnt walking! She was so impressed with Emma and said we get her the right AFO's and she will be walking in no time. After that appointment I felt like someone had punched me in the stomach it took me so long to recover from that one! I couldn't help but to blame my self and feeling like I should have done more. I have finally come to terms with everything and knowing that she will get her new AFO's next week and she will be able to get back on track will be great because she wants it so bad it hurts.
Just as I have felt like things are about to go back to normal I felt like I got yet another blow. Ugh I just feel like when is my poor baby going to catch a break! Back in May we took her to the eye doctors for that drift in her eye and he was pretty concerned because she wasn't really using her left eye so he suggested to patch her 3 hours a day every day so she can build the strength back. He mentioned the possibility of surgery down the road to help fix the eye drift but our main goal was to strengthen her eye. So we went back today for her 6 week follow up and he was amazed how well her eyes looked. lol he told me I get an A+ for the eye patching he would have never expected her eye to build its strength back so fast. I was like wow this is so awesome! Yay.. and then so our next thing will be the surgery. "WAIT WHAT"
Excuse me, Yes she needs surgery to fix the eye muscle because we need to pull the eye looking forward again..ugh seriously. Of course he reassures me it's not a big deal out patient procedure and it only takes 15 minutes, she will be put under and it way safer then lasik eye surgery. Umm ok well what are the risk's well the risk's are of course infection, surgery again in the future, eye damage and oh lost of eye sight. So from what I'm told they said that has never happened an any of the cases they have had. And as far as future eye surgery he said about 10%. So I booked her surgery for the end of August.
So this has been my drama for the summer, I will be posting our fun things that have happened this summer because I hate all the doom and gloom stuff but I know I needed to update I've gotten some emails about what been going on with Our little Princess.
This month I have been working so hard at getting Payton's birthday party ready and wanting everything to be perfect. He had a Super Mario themed birthday party which let me tell you there isnt much for Super Mario so with that being said I decided to all of the decorations out of poster board and do the party bags my self, and of course I made the cake. It defiantly saved some money that way we could do some other specail things. We got he a bounce house which I think he enjoyed more when everyone was gone then when everyone was there.
I really cant believe it's going to be May already. The craziness that May will bring. We have more things going on in May then we have in a long time. We have lots of appointments and meetings and school stuff that when I wrote it all out on our calender it made my head spin. I am excited for next weekend because just maybe I will be able to relax. Emma's AFO is now so big on her due to the fracture because when then casted her for them her foot was so swollen and now its totally healed that her foot slips out after ten minutes of putting them on. It has been totally frustrating because I keep taking her back explaining that it just doesnt fit. So finally they decided to cast her a new AFO at no charge! Yay finally I was getting upset because we $700 for these AFO's that dont work. Emma has been doing great at standing now and pulling up. I have totally forgotten to post about Emma walking now with her walker. I know most of the family knows but forgot to share. She walks when she wants to but she is really determined when she is doing it and she is really doing great. Its funny though because she doesnt want to walk for PT when I get her to she does so well like its no big deal she just doesnt want to do it for him. I usually have to bribe her to get her to do it.
Gosh I look back a year ago, things felt just so horrible. Emma was having all those problems with her shunt and we are getting so close to a year now with no more problems. I just hope we can keep this up with no more problems.
Geeze I feel like a broken record but seriously it's like no time to sit on the computer and blog. Well things for Emma has really been good! Well she did get another ear infection in the same ear which I just dont think it ever went away. Emma got her first hair cut, haha my Mom kept giving me a hard time about her hair because it was just all over the place. So the this picture is right after I cut it but I only cut the front. I swear if was like she turned two and all the sudden the words just keep coming. Its a new word everyday. It's such a relief to know its one less thing we have to worry about. Emma has gone through a serious growth spurt she has just shot up. The bad side to this it has really made her tight on her left side I have really been having to work her a couple times a day so she can have good range of motion. She has been working so hard in physical therapy that you can really see the progress she has made, She is pulling up every where she can. In therapy we work on strengthening her legs. Her therapist took a chair and has her practice sitting and standing up. Now we have moved to no chair and getting her comfortable getting back down when she pulls her self to stand. Poor thing she gets so scared after she has gotten her self up onto something she cant figure out to get down. From what her therapist said her body hasnt learned those signals yet so it feels to her like she is out of control. So what we are working on will help fix that so she feels comfortable about what she is doing.
So I am been trying to come up with something for Emma to do while we are doing yard work in our back yard and I came up with a Sandbox and it turned out to be a huge hit. We spent lots of time outside yesterday and Emma didn't even want to go inside she just wanted to keep playing
Which is totally awesome because I can start gardening and get my backyard ready for summer. She also got a Water table for her birthday from Nana and Papa and that was also a huge hit except I couldnt keep the dogs out of the water :) So we have a new addition to our family. We first rescued a Saint Bernard that was 6 months old and didnt turn out so well due to the fact she didnt get along with Dozer so we where all very sad because we had to take her back, but with much searching for the right dog we finally found her and I guess things just happen for a reason because this dog was meant for our family. Her name is Daisy she is almost 5 month's and she is a Saint Bernard. She is already 60 lbs so I would say she will be a VERY BIG DOG! but seriously she has the best dispossession I am going to train her to be Emma's service dog. By the time Emma would actually have a use for a service dog Daisy will be the ideal age to do so. And best part great with the kids and of course Dozer as you can see...
These videos are a must watch so if you get this in a email click on the links to watch : )
Emma Jamin out!
http://youtu.be/KiTl8KGCzac
Emma working hard in therapy :)
http://youtu.be/xE6x67OjFT8
and Dozer and Daisy laying together which happens all the time, its to cute not to share
I have held in so much hurt and pain after finding out about the study that we participated in and how a you can have in utero surgery now and how it really makes such a difference. Wishing I could go back into time and change our outcome. I know Nick and I did everything we could and everything else wasn't in our control but now learning that what's really important is staying positive for Emma and not look back at the past but focus on our future and now that everything will work out all in the end.
Now with all that being said I have not given up hope and now how there are many surprising things to come from my little spit fire who is bound and determined to have it her way.
http://youtu.be/v018ruHBzGY
We did just go to Shriners yesterday she was fitted for a wheelchair this will help keep her in her new braces all day when she isn't walking around. Surprisingly enough I am excited because this will give her more freedom in places she cant go and that means this Mama doesn't have to carry her every where. She is extremely thrilled to say the least she tried out the Zippie Zone 
and moved around like she had done it before with a giant smile on her face..so they where nice enough to give us a loner mean while. To her much excitement. Payton thinks its the coolest thing ever and was excited because now she can go out side and play with him (ahh to cute).
We are all doing great and loving our new life in paradise!
