Funny Now...

Have you ever had one of the moments when someone has caught you at a very bad time and you completely over react then you normally would?

So this is the background of the story. Payton goes to Kumon twice a week and we usually are able to park in the handicap spot right in front of the Kumon center. This particular parking lot has very tight parking spots so any time we don't park in the handicap its very hard to get her out, so it makes my life a thousand times easier. So this particular space is on the end so next to it is a loading zone and then nothing. So what has been happening these parents have been parking right in the loading zone because they don't want to park some where else and get out of the car to go get their child when they are done. So I have been actually going to there cars and letting them know they are parked in part of the handicap space and my daughter needs this space to get in and out of the car. 

You really wouldn't believe how many people do it all the time, and I had two Moms who did it twice to me even after asking them not to. So I have actually taken two pictures like this one and sent it to Broward county Sheriffs office because I brought it up now twice to the people at Kumon asking them to remind parents that is not a spot to park in and nothing has happened. So a couple of days ago we went to Kumon and we parked and Emma and I got out this day and decided to go work on homework at Zona Fresca couple stores down.Well Emma wasn't being good and she had a full blown melt down wailing as we go out of Zona Fresca all the way back to the car. So we get back to the car and of course someone was parked again in the damn loading zone. So of course I walk over excuse me can you move we need to get into our car and your parked in part of the handicap space. So the lady moves and we get into the car. So 5 minutes later this

Lexus pulls up right into the loading zone. Now sometimes people will pull into the loading zone and just drop off and leave but not this car. So I was pissed, because this is now the second car and what was even worse was this person had a Handicap place card. Now I was already very irritated about this situation with Emma. 

So I get out of the car and their window was already open. 

So I say: Excuse do you know you are parked in part of the handicap spot and we need this room to get in and out of our car.

The man in the car says:  yeah I have a handicap sticker

Me: Yes but I am already parked in the spot sir you can't park in the same spot someone else is

and at this point I am getting mad because the guy immediately got attitude with me.

Guy: who are you I can park where ever I want you don't make the laws.

Me: Excuse! You are parked illegally right now and of all people who has a handicap place card should you know better.

All the guy kept saying to me is I don't make the laws and he could do basically whatever he wants. Now this guy must have been early 60's or late 50's and his wife was sitting in the passenger seat telling him just to move and it wasn't worth it, and then they start arguing because this guy wasn't going to move. 

So I say thats fine please just stay where your at so I can call the cops and they can issue you a ticket since Im not the law! 

Then the guy got really mad and I couldn't even tell you what he said at this point because all I was seeing was red. I then said to him he should be ashamed of him self because I need this space for my daughter who is in a wheelchair and I actually went to the back on the car pulled her chair out and I said see...

The man was so in

Half way there!

So I wrote a quick little update about Emma on here please check it out.
We love you all thank you for your support.


https://www.gofundme.com/helpEmmaBeAKid

Our story, and why we need your help.

I tend to forget most don't know so let start at The Beginning... 
At 18 weeks we had our first ultra sound to find out the sex of the baby. We found out that day that our precious baby would be born with a birth defect that would effect her for the rest of her life. That changed our lives forever, Our daughter would be born with Spina Bifida. The next day I saw a specialist and I was told that she would be paralyzed from the waist down, she would be in a wheelchair for the rest of her life and she will possibly be mentally delayed and her quality of life wouldn't be so great. She also went as far as to suggest to abort asked me to seriously consider it. After that day I went home did all the research I could and found that kids with Spina Bifida are amazing and grow up to be productive members of society that have jobs and kids. We decided that we wouldn't give up on her.

We have been incredibly lucky to have family surround us help during this time.

We decided to become apart of a study for babies with the birth defect Spina Bifida and the study was to find that repairing the back of the baby while its still in the mother then close the mother back up and wait till term compared to just closing the back after the baby is born. The study was a 50/50 chance to get the surgery but the catch was that the study was in San Fransisco and I would have to have another adult to stay with me during the whole pregnancy from 24 weeks till you give birth and then however long the baby stays in NICU on top of that. So our problem was Payton and we wouldn't be able to pay our bills if Nick left. It turned out we didn't get elected for the surgery which was devastating but I was soon happy to spend the rest of my Pregnancy home as a family and I didn't have to leave Payton. At 34 1/2 weeks I started having allot of contractions as the week progressed they got worse so since we remained in the study we had to fly back to San Fransisco to have Emma there. So everyone started to become worried that I would end up having Emma in Phoenix and not in San Fran like we wanted because the doctors are the best there. I got on a plan 35 weeks with my Mom and stayed there for 2 weeks before I gave birth to Emma. I was separated from Payton for a total of almost 6 weeks and it was one of the worst things I have ever gone through to be away from your child so long because he was 2 at that time.

We stayed in a house similar to the Ronald McDonald House the whole time. Emma was in the NICU for two weeks.

Emma had her first surgery at one day old to close her back, one week old she had a shunt placed in her head. At 16 months old she had to have a revision of her shunt again because it failed. After that at 2 she had eye surgery to correct her eye. Next was at 4 she had major back surgery for detethering surgery and was in the hospital for a week. And last was this year she had  tendon release in her leg, foot, and toes.

Now...
My sweet baby girl is trying so hard to bounce back from this last surgery. I have been beating my head into a wall trying to get her to do therapy and its so difficult. She also had bent the metal on her brand new HKAFO's Shriners made so we had to go back to Tampa 4 hours away to find out that they would have to be rebuild so they took another 3 weeks. So they fix them and yes they are great fit her perfect. Ok Emma doesn't like being in them now because she is working so much more now since she is weaker and doesn't want to wear them so we fight about them. The problem is she goes to school now just in her chair with no way to get up and move around and get out of her chair. Well the solution we came up with is the Mobile stander this will stay at school during the week and brought home on the weekends

This one in the picture is the actual one we want to get her and is called a Rifton Dynamic Mobil Stander. This allow her to stretch her legs and strengthen all at the same time and the best part is she will be standing tall with her peers. She will get in and out of it through the day. Now the worst part of Emma's Spina Bifida is her head aches and right now she has had allot, along with allot of back pain. Come to find out it's probably her chair. So the next I find out is that typically kids need a complete modification of their chair ever 2 years. She already needs a bunch of parts like new wheels, cushion, screws, brakes need to be fixed, back cushion. So possibly looking at almost the cost of a new chair , which is a real possibility right now because she has beaten her chair up. So if the cost is the same we will request for a new chair instead. We are looking at the Colours Razor Blade Jr wheelchair.

so this is where I ask you for your help. We started a GoFundMe for Emma and we are asking for any donation you are willing to give us. The other part is I ask you to share our story we your friends and family and spread the word. Our family is so grateful for everyones help and support, from the bottom of our hearts we thank you.

https://www.gofundme.com/4g2ggcgc

Goodbye Preschooler

Hello Kindergartner

 Wow I can't believe how long its been since I've written a blog. Its easy to shut the whole world out when you have so much going on, I tend to focus on the day to day stuff. Well here we are the last summer before my baby goes to Kindergarten and I have no more kids at home. Its hard to think how fast the time go's by and before I know it they will be grown up.

I know come Monday morning first day of Kindergarten I will be crying it's a guarantee, but they are tears of joy for the last five amazing years we have spent together. 

She has been through so much in such a short amount of time and she has so much Love and Strength and Fire in her that it makes me so proud to say I am her Mom. 

And of course I can't forget about Payton who amazes me all the time.

Payton has grown up so much, I can't believe he is 8 already. He is going into 3rd grade and at the end of the year Payton received awards and Student of the Month for his grade for Honesty. He was tested at the end of the year for reading and math. He passed the 5th grade reading test and the teacher couldn't test him past that. He is so bright and always wants to work hard to make everyone proud of him. 

Thursday was Open House to meet the teachers. They had the grades split for different times.

So we saw Emma's teacher first. Emma was super excited and said she loves her.

Her teacher is super sweet and seems like it will be a really good year for her.

Then we went and saw Payton's teacher later, and at the end of last year's school year a third grade teacher he met and he really liked her and told me he really hope he would get her and turns out he got her. She is also really great teacher and seems like a good match for Payton. He also got two of his good friends in his class so he is so excited for 3rd grade.

And So am I!

They will both have an awesome year I know it.

The countdown begins...

So I realize in my last post I had not said when exactly her surgery is. Emma's surgery is on June 2 and really the countdown officially started on Monday, I barely have slept the stress has officially kicked in. I know in my heart everything will be fine and more so she really needs this. Her symptoms have only worsen and have become more obvious. My Mom got here last night and will be staying for two weeks. It will be a big help since school for the kids actually ends next Thursday, and unfortunately Emma will be missing the last week. So Friday I will bring in something special for the whole class so she can celebrate her last day.

Now that I have gotten that out of the way I will share some fun things the kids have done since I have last posted.

We celebrated Payton's 7th Birthday Plants Vs Zombie style, and then the same weekend was Easter. So it was a fun filled weekend.

Then the following Monday Emma started swimming lessons for two weeks with her preschool class. She had a rough start due to always having major issues with water sensory. Lots of splashing which she hates but by week 2 she did so well. Got her going under the water everyday after that, I think with more lessons she really could get the hang of it and swim all by her self.

Couple weeks after Nick got free tickets to the Marlins game in Miami. Which was so much fun, the kids had such a blast especially Emma. I keep telling Nick I think she is going to be your sports kid.

Then two weeks ago we drove back to Shriners thinking we were picking all of her bracing up and her new shoes. Turned out only her AFO's had been done and her HKAFO's had not been finished and they couldn't give her new shoes until her HKAFO's are ready. I was very upset since we drove all the way up there expecting them to be ready, they wanted us to come back this Friday which I planned but started thinking more about it and spoke with the doctor and therapist said that its very likely she will need another adjustment after the surgery and we would have to come back again. So I decided its probably a better idea if we hold off completely and go back when she is well. It is such a hassle to drive the kids 4 hours stay in a hotel and sit there for half the day and turn around a drive back.

Then last weekend we went to the kids school carnival, had lots of BBQ's, lit off fireworks, and went swimming. I love living some where there is so much to do all the time we have defiantly been very busy but having so much fun.

So that is our busy month and I will update after Emma's surgery.

Results....

Yesterday was Emma's MRI. We got there a little before 8 am. As you can see she looks super cute even in that hospital    gown. I think every nurse who saw her commented on how pretty her flower was.

She really did very well and luckily they only did sedation and not local aniathesia. They put an IV in and gave her the medication she feel asleep in the room with us. 

They wheeled her off to the MRI room. We waited for almost 2 1/2 hours they brought us back and nurse said she had already woke up, and she couldn't believe how much of a little trooper she was. When we finally saw her she was barely awake. Now before she went to sleep we had to take her flower out and the first thing she says to me when she woke up was, Hi Mom...Can you put my flower back in my hair. 

So we had to keep her awake for 15 minutes, before we could leave and let me tell you don't let this picture fool you she was so out of it barely awake but I got her to smile so I could take a picture and got this picture while Dad and Payton were messing with her which didn't make her to happy

Her attempt at giving them dirty look. So finally she gets discharged it's now  almost 2pm and we walk over to the Neuro surgeon who has to reprogram her shunt and read the results of the MRI. Both Nick and I are super anxious at this point poor Emma is asleep in her wheelchair and Payton was just done by this point and probably would have rathered to be a school. We finally see the doctor which seriously felt like an eternity. We talk about her symptoms she  has been having and I expressed my feeling on her weakness. So he pulls her scans up and shows us them. Explains to us that it's hard to tell and allot of times you really have to go off the symptoms because you will of course have a built of scare tissue, but looking at her images he said it looks like she has more scare tissue then he would like to see and her cord is pulled down more then it should be. He recommended her to have the dethethering surgery and said we shouldn't wait any longer then two months. We agreed we would do it after school ends. I have so many feelings about it. I'm upset that I didn't push harder to get the other doctor to do the MRI sooner and it does piss me off he was so wrong BUT on the other hand I am thankful that we are with a Doctor I know is rated one of the best doctors in the country and seriously I wouldn't want that other doctor operating on her any ways after such a bad judgment call. I'm such a firm believer that every thing happens for a reason. So the surgery takes about 4-5 hours and she will be in the hospital for 3-5 days and needs to limit activity for 2 weeks. The risks of the surgery is it's possible for her to become more weak after the surgery and 10% chance that within the first couple of days it could cause her shunt to malfunction because the change in pressure can clog the tubbing. The surgery will probably be middle of June.

Hope for the best and worry less. 

Playing catch up...

Oh boy so much has happened since I last blogged. It has now been 4 months since we moved again, and we are now living in sunny Fort Launderdale. At first I have to say it had been a serious adjustment good and bad, but now after four months I think we are all pretty happy here. Payton and Emma are now in the same school which has been so nice since before I felt like I was constantly driving all over the place. Emma started school in September and has seriously been the best thing ever for her. I was so scared to put her in school and here in Florida preschool is full time, but surprisingly she loves it so much that she gets sad when there is a school break.

Payton has had a little rough transition to the new school which was to be expected because last year it was rough on him too. However he has bounced back much quicker, right before spring break he received super student of the month and Kid of Character for "Honesty", Which is amazing for only being there a couple months. So last week was Spring break for the kids and we all survived. We drove up to Tampa on Tuesday stayed overnight since its a 4 hour drive and next morning went to Shriners for Orthopedic appointment and to get her casted for new AFO's and new HKAFO's like the ones she previously had. Now about a month ago Emma had appointment with the Orthopedic surgeon here in Fort Lauderdale and he seemed to think that Emma needs surgery. For those who don't know, Emma's left side has some pretty significant muscle imbalance's which causes her whole left leg to be very tight and causes her foot to turn in. His take was that she needs a hamstring on the back of the thigh (partial hamstring release). These muscles control the tension in the thigh and around the knee, allowing her to walk with a more normal posture. As well as needing a surgical procedure that would correct the bone in the back of her heel and pull it backwards and a muscle and Achilles heel release so her foot can stay in a nutural position. Now he was also concerned how weak she was and I explained everything we had been going through which I will explain all after this.

 So he ordered a sedated MRI to have her back checked. So when we went to Shriners and I explained to them everything this doctor had told me they completely disagreed with the surgeries and said that for a child this young that has so much growing left to do that it wouldn’t be wise to have these surgeries because the problem will come back with in a couple of years, and not only that but where her leg is tight is mostly around her knee they said that she is developing a knee contracture and this surgery would most likely not even release her leg and she would still be tight.

 Now of course I was very shocked to have two doctors say such vastly different things ( of course this wouldn’t be the first time nor the last). So of course my next question is ok so how do we help her what do we need to do. The answer was bracing and getting her up and walking and standing as much as possible. So Nick and I decided that from here on we will stick with Shriners for her orthopedic stuff, because they deal with kids with Spina Bifida all the time and this doctor does not and we feel if anyone is going to have more of an understanding its them, but we also decided to get a third opinion just to be safe and it will be from a Physiatrist who is not a surgeon and hopefully will be able to weigh in on the situation. Now I would say since February of last year there have been subtle changes in Emma. We went to Spina Bifida clinic at Shriners in April 2013 and I thought maybe it was the shunt because she goes through these spells where she complains about her head and her gagging becomes so bad and she is moody. Neuro asked has she been a little weaker I said yes but she hasnt been doing therapy like she was back in Arizona so I think that had a huge roll. He seemed to think it was her back, I disagreed and we went and saw a new surgeon in St.Pete where we lived. Before going to new neuro Emma got a UTI second one she has ever gotten and she had full blown fever. Urologist said we need to make sure nothing is going on with the back so he refers her to new neuro. Now at first he didnt seem to think anything was wrong and MRI showed nothing and everything was all hunky doorey, well couple months later and September rolls around she starts to have issues again complaining of headaches started to get constipated.

 I noticed she isnt as strong as she was in February showed PT videos she agreed. So went back to neuro in October and again in November. I insisted she needed a sedated MRI because I feel like she could have a tethered cord that is it was has to be what’s going on well he refused and said no lets to a regular MRI first to see if its the shunt. Ok so we did MRI nothing he says everything is the same, so with her prior history with her last shunt malfunction her ventricles did not change much, so the neuro surgeon says well we might need to preform exploratory surgery because it could be her shunt.

I of course asked what about her back shouldn't we make sure her back isn’t tethered cord first (which is scare tissue developed around her back closure that she had when she was born). He says No there is no way she could have a tethered cord this early it’s got to be her shunt. Well the neuro she saw back at Shriners is now gone retired and now it's December she wasnt really complaining as much and we found out we were moving again. So fast forward to now she saw neuro surgeon here explained everything, she had been doing good as far as symptoms go but would occasionally complain so neuro said we will wait and see wanted her to start therapy again to see if that would help since she is growing to help stretch things out. So thank goodness we will finally have some insight on what could be going on I dont even know what to expect I know that it is very hard to tell if its tethered and the easiest way is go with the symptoms that go along with it. At this point I have my self-convinced that is what is going on I really do. So next week we will see what happened she will be seeing neuro right after to recalibrate her shunt and read the results. This time we will be one big happy family because Nick and Payton will be there. This time I will make sure to update next week as soon as we know.