Wednesday, May 28, 2014

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.

Thursday, April 10, 2014


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. 

Thursday, April 3, 2014

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.