"Fun In The Sun"

It's so crazy how you can be down so low and then be up so high again. Things have been going so great with her I almost feel it isn't real. We have been approved for 2 hours a week of physical therapy and we also meet our new DSI person, who seems totally awesome and on top of things. We hope next week we will start with her. She said she works in all areas so I am very excited.


Then in physical therapy this week her therapist is very happy how well she is doing. He actually thinks her standing has really improved and she isnt bowing her legs as much as before, and is able to stand for longer periods of time. So we are working on her being more stable when standing, then we will be able to start working on weight transitioning so we can get to the ultimate goal! I'm so excited things are moving along, I want nothing more for her to be mobile in some way.

Her neurosurgeon called today to check in and see how Emma was doing. I let them know she has been doing great and I really thought that shunt adjustment had done the job. He said we will hold off on another MRI for 3 months check back in see how things are going unless problems occur again. So very good news all around and looks like we will be going on vacation this summer!

I think Nick had a wonderful Father's day, Saturday he finally took Payton to see Kung Fu Panda 2 and had a great time. Sunday we went out with Grandpa (my dad) and had a nice lunch with everyone. Things seem like it couldnt get any better : )

"Oh Happy Day" : )

Our house has exploded with laughter and smiles once again. I felt that we would never see the day again that my princess was her super happy self again. I can't even begin to explain the joy I feel seeing her play and laugh.Its weird because for almost entire month I hadnt taken any pictures of the kids, which made me very sad when I realized it. The last week or so I have taken so many to make up for lost time : )

Turned out of the shunt was what was bothering her. It was dialed down to low and I think that is what was causing the throwing up and head aches. Also since the gaging and reflex problems have gotten better. We had her ISFP meeting today with early intervention (which for those who dont know what that is its government services that provide the physical therapy). I requested a another hour of PT a week and we will be getting DSI which is a service just reinforce what PT is doing so we will be looking at 3 times a week now. Which is exciting because this last month has been so hard on her we have really fallen behind on everything and she will have to work real hard to get back where she was. I will be talking to her PT tomorrow to see what he thinks about getting her a mobile stander. Since she isnt even crawling yet I would love to see her mobile in some way. Also he wanted to give her time in hope's she doesnt need derotation straps which helps the bowing/turning of her legs. So I will be asking about that as well.



So all is well for the last week and I hope we keep this up, because we all need a break from this horrible time.

Waiting for a rainbow and sunshine..

After what feel's like so many dark days for this baby girl. As a Mother I am so use to being able to make it better, but everything that has been going on with her has left me to feel so helpless and frustrated.

I apologize I haven't updated my blog but I have barely been able to keep up with everything. So they found that the tubing going to the left ventricle was very short and at a 90 degree angle. So he replaced the tubing and added extra holes in the tubing so it will drain more.After her shunt surgery we had gone home on Friday afternoon and then that night at 10 she woke up and Nick got her gave her to me and she just started puking every where. So of course I called the neurosurgeon and she is still throwing up and he said ER and off we went. They did a series of scans and it showed her shunt draining on the right side instead of flowing more threw the shunt and she also had a little blood on her brain, and she was very close to being em-packed. So the doctor thought that all these things had contributed to her being sick. We ended up staying in the hospital until Monday. Then Wednesday and "HERE WE GO AGAIN"! She is throwing up and I called the neurosurgeon he said I wonder if its a GI problem. I will get in touch with a G.I doctor and get her seen because it doesnt sound shunt related since her scan on Sunday was good and her head was nice a sunken. She was very ill until Saturday and she was doing good. Ok things are better but then Monday she is not really eating or drinking, then the same thing on Tuesday. Wednesday we see the G.I doctor and she says its acid reflex. So ok if you say so, this kid has an iron stomach. I mean I could eat anything while breast feeding and she had no problems. Payton was a completely different story and the complete opposite. So give her med's the same day and then Thursday and then that Thursday night she wakes up at 3am throws up and is dry heaving and then finally I get her to go back to bed. Friday I call her G.I doctor and neurosurgeon and they say take her to the ER if she throws up again and if she doesn't urinate in 8 hours. Luckily I didnt have to take her in and got liquids down her. Saturday got her to eat a little bit and drinking more, same thing Sunday and Monday.


Then Tuesday which is now yesterday was just a nightmare. I was in tears, I just felt like I have hit the breaking point of stress and consent crying through the weeks. She was so miserable and just seemed to be in allot of pain. I started really thinking about everything that she was doing and was seriously concerned that it has become more serious. She has been having gagging problems, grabbing at her neck crying in pain, also she has this reflex thing going on where it sounds like she is throwing up but swallows it back down and then way more hick ups then normal. I have been wondering if the throwing up is also related.

So today we had our MRI the scan showed her ventricles to been very small on both sides. Which is great BUT her shunt is dialed to the lowest setting so it is possible this is causing her to have head aches and make her sick. So the solution was to dial her shunt up a little to see if it helps her feel better. The new and scary concern is the chairi and is it causing all these new problems for her and if she doesnt get better and more back to her self then we will have to seriously look at having to do surgery on it. So she is now down to 20lbs and she was almost at 24lbs so she has lost allot of weight after all this and I am so worried for her right now.

Thursday..

So it turns out our little Emma Lou will be having surgery, the Neuro surgeon decided we will go as planned for Thursday. We check in at 7:30 and surgery is at 10am.



The plan is to go in take the shunt apart if all looks good with that then he will be extending the shunt tubing to the other side of the brain. I'm scared for her but we feel this is what needs to be done for her so she can get back to normal and be that sweet happy baby we all know and love. I've sat here thinking there should be more to say but there really isnt. I know everyone is praying for her and everything will be ok.

Just hanging on...

I feel like I have been jerked around this way and that way with in the last 24 hours. Thursday afternoon I took Emma to the ER and Nick meet me. She started to display problems like previously with her head that wouldn't go away so I felt someone needed to see her. Turned out our doctor wasn't there and everyone was just to busy to see her and wanted us to just take her to the ER. I was PISSED and I LET THEM KNOW! I was really hoping she would get better then we wouldn't have to take her in. She just got worse so at that point there was no choice.

http://www.youtube.com/watch?v=YETwxWI4Apk check Emma out!
They did a CT scan and a shunt series of x-rays to see what was going on. There was a minimal difference but with the pattern she has been displaying they decided to keep her over night and see her doctor in the morning. So then it was explained to me that it really isn't the shunt but her ventricle has clasped so much on the right it has caused a suction on the left ventricle that it is causing a blockage. So the solution is to go in and make a tunnel and connect the tubing from the right ventricle to the left. The risk of this is the suction can then end up happening on both sides or alternate between each side. Now he said that he wanted to wait to do surgery since it wasn't an immediate situation. If she has problems this weekend then we can expect her to have surgery Tuesday, if we see it happen this week then Thursday. If nothing happens then we just wait until it does and when it does then he will go ahead and do surgery. That is pretty much most of it in a small nutshell. I am hoping that it will just end up happening this week. So once again we shall see what happens, all eyes on Emma.

Just relax!

So after adding everything up that has happened with Emma this week, I truly felt that these issues had to do with her shunt and not teething. She had been super cranky, sleeping more, couldn't feel her soft spot, and her forehead looked a little larger. So.. Sunday morning she woke up and it was like it was just all better, but still concerned thinking I should let the neuro surgeon know and see what he thought. Which turned into us coming in, and of course she is FINE which I knew that when we went. But geeze how many time's is she going to have to go through this before something actually happens. I think this is the most stressful part of it, because I feel just so bad that she has to go through this. We also got the same answers as the last and unfortunately no way to really know what is causing this to happen.

Part of me feel's like an idiot for not having someone see her last week and the other part of me is glad I didn't over react because she is fine again. Which is really crazy because her behavior today is totally different then it has been all week. I really want to be optimistic about this situation but my gut tells me other wise. I just feel like something bad is around the corner. I try to just breath and relax and at this point nothing left to do but pray and hope for the best.

What fun..

Nick has been on vacation this week, and boy have we all had fun. For not going any where we have managed to stay very busy.Payton has been Dad's right hand man or you can say Nick's shadow every where he went Payton was right there with him. I know when Monday comes Payton is going to be one sad "dude".


We have been doing allot of stuff with the garage and cars so we had spent allot of time outside and I decided to stick Emma in Payton's power wheel and I had never seen her so happy. So the next day we decided to take the kids to the park and let Emma ride with Payton and She was LOVING IT! She has not been her self so it was nice to see her happy and having fun!

I know I can be paranoid and over react sometimes and after the information we got from the neuro surgeon I have been trying to just pray and tell my self that everything is ok, she will be ok. Her behavior has been strange the last week. Now I am pretty sure she is teething so again its so hard to figure out if it teething or something else is going on. I have noticed that she deals with pain by sleeping more, and this week she has slept way more then she normally does. which of course Nick thought it was less but I know its more because she is starting to have less naps and not as long. Tuesday she was so cranky and put her down around 5pm because she was so cranky and acting very tired which is very unusual for her to do that at that time of the day and she didnt wake up until 5 am the next morning. Last night she seemed clearly uncomfortable and I noticed she was rubbing her head. I think it was Wednesday when I thought to my self is her head bigger? I thought ehh maybe I am just being pariniod and I havent said anything to anyone about I figured I would just watch it and her head, so then Thursday the kids stayed the night at my Moms and Friday morning we went and got them and my Mom says to me I think her head has gotten bigger. Her forhead is more firm. So now I know I am not the only one seeing this, I feel it in my gut something is just not right. So I pray and pray that I am wrong.

So I will be calling everyone on Monday to see if they can measure her head and see if they notice anything different. Say prayers for her please.