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.

Good Ol "Wait and See"...

So we just got back from Emma's appointment for the results of her MRI. Thursday I received a message from the doctor's office saying we needed to come in for the results. I was concerned because in the previous appointment the doctor said they would give us a call with the results, so when they said we needed to come in I was immediately concerned I called back asked if it was bad the nurse said oh no we just ask all patients to come in for results. Which probably was a good thing she said that or I would have been worried all weekend.

Anyways he compared the MRI scan from 4 months and the recent scan she just had and it shows her ventricles have increased quite a bit from last year. The increase was on the left side opposite of the shunt. Now since she seems to be doing good we will not doing anything immediately. He will have her come back in 3 months and do another MRI to see where the ventricles are at. Now there are different scenarios that could play out. Best one would be what he previously said was that during that time debris was clogging the tube witch is the result of her behavior previously back on that Friday and when we did the scan it showed that and it has fixed it self. Other scenario would be the shunt is starting to shown signs that it will malfunction soon. The other scenario is quite possibly she might need two shunts because the left is just not draining enough witch would result in why the left side is so big. Then lastly is in the months time and the next scan shows that her last scan has show consistent with the new then it could just be how her brain is because as kids grow so do the ventricles but from what I have gathered it doesn't seem like this scenario is very likely because of the significant change.

So for the next three months we get to "Wait and See"! Of course this will have me on the edge of my seat worried that something could happen and her shunt could just fail. Out of everything with Spina Bifida I feel like I can handle but when it comes to her brain, chairi and the shunt I get so worried and freaked out.

At this point I will pray and let her be in gods hand's and know that in the end it will be okay.

Rolling with the Punches..

Well I have re-written this post three times now and everytime I wasnt able to finish and when I re-read it over I have different feeling so here is my last attempt to my post that I meant to post over 2 week's ago!


So in reality not allot has happened, but at the time it really didn't feel that way. The other day Payton had saw a little girl who was probably a little younger then Emma and She was walking and crawling. Payton stared at her like he couldn't believe what he was seeing. He starts yelling to me "Mom", "Mom", look! That little baby is walking!! I said to him I know that's Awesome! He looks at me and say's but Mom Emma doesn't walk or crawl. It dawned on me that he has always just thought that it is just normal for her not to move around because he really isn't around other small babies Emma's age. So I said yep bud that's why the doctor ( he calls the Physical therapist doctor) comes every week to help her so she will be able to walk. You know it didn't make me sad because I have excepted that she will do everything in her own time. I have full confidence that some day she will get up and move.

Now I had forgotten to mention in my last post that MOM's study came to us for her evaluation since there was no way we where coming to them. It started off really great they did her physc eval and she did so well she even impressed me! The psychologist was impressed because she said usually they dont get through this much due to the kids wanting to stick everything in there mouths. She didn't try sticking anything in her mouth not even the cheerio's she was given to put into a cup. Now I was under the impression the she could take a nap when she started to get tired, the started at 8 am and her nap time is about 10am and when 10 rolled around she was tired and very cranky but they wanted to keep going and could clearly see she wasn't happy at all! It started to make this Mama not so happy as well.They wanted to start to do the physical part, which of course she wanted to do nothing! She wouldn't try rolling over, sit up , absolutely nothing and get this! They took it as she just can't do it. I explained she can do these things she is just very tired but I don't think they believed me. So then it came to see where she has feeling. Well I know she doesn't have any feeling in her left foot very minimal feeling if not any below her knee on the left but the right I know its spotty but pretty sure she has feeling in her foot but the doctor concluded that for both sides no feeling below the knees. I'll be honest this pissed me off because I really didn't believe that and I said that several times but decided that it doesn't matter makes absolutely any difference and I know her best! I was glad to see them leave and be done with it!



Her MRI we are still waiting for the other doctors office to send the MRI CD to the Dr's office so they can compare. STUPID and irritating but she has done fine nothing strange but it has been almost 3 weeks now.

Here is a picture of her in her new stander that a VERY awesome Mom gave us so I can stick her in it without any help and she is happy and glad to be standing. It has made my life so much