Avery’s second Miracle League Game

Last Thursday before we left for Durham,NC Avery had her second Miracle League Game…which of course she had a blast at..it was suppose to be bring your own teacher week but Avery’s teacher’s didn’t end up showing up..im not sure what happened bc they told me they were coming when I handed them the invite..and I asked Avery the day of if her teachers were going to come and play baseball with her and she told me yes..so im not really sure if they got lost or forgot about it…which she was a little disappointed as was I bc if I knew they were going to come I would of asked one of her other teachers or therapist so she could play with one of them…

But they had back up just in case..so the back up buddies for the kids who didn’t have any teachers were the Landrum base ball team..This was her buddy..

Avery up to bat..at first they said shes a non tee batter..and I was saying to someone beside me..what shes not going to be able to hit that ball with out a tee..and as soon as them words left my mouth…she hit that ball..with out a tee.

What I hit the ball??? see the ball in motion..she surprised herself even too…lol!!

Come on buddy..we gotta run 

Safe….

So as you can see in the picture ^ there..that when she came home she forgot to touch the home base with her foot..so the announcer told her she didn't touch the base....so what does she do.....well she listens to him of course;) and runs over to home and bends down and touches it!!!:)) hahaha!!! LOVE HER!!!

Check out who poses out in the outfield 

Waiting to bat the second time around…

So the second time she came running home she didn’t even bother running across home plate she just came right up to home plate and bent down and touched it with her hands..silly girl

They had pictures last week too..and you get a free team picture and free individual picture..

here is Avery’s team..

The team we played against Thursday Night….Crusaders…

I have to say that it was a pretty awesome night..there were two kiddos that usually walk with walkers and they wanted nothing to do with them while walking the bases. one crawled around the entire bases. and one walked with his arm supports instead of his walker..the kids were determined..it was soo awesome..pure joy…these games are so much more then just a couple of kids playing baseball..so much more.

CT Myelogram

Well I had the procedure done on Friday..sorry I haven't wrote about it but I've been recovering…and its been a really hard recovery. I think bc in my mind I thought it was no big procedure at all and I was just going to bounce right back. HA! Boy was I wrong.

The procedure itself was quite interesting. The part that she said was going to hurt the worst was right at the beginning where they put a needle in numbed the spine. Then they measured the pressure up there in my head. And it was measuring normal. I couldn’t talk or anything while for a couple of minutes while they measured it. It measured 16. Normal range is from 14-20. Well then they basically pumped my head full of pressure. She said I would feel it pretty soon. She wasn’t lying. Within seconds the front of my head killed!!!!! and my head felt like it just got blown up like a balloon. it was horrible. Then they injected dye. This is where the interesting part is…Imagine this…I'm laying on the table with a gown on with nothing under and it is open in the back..k… Ok so then they have you put your feet all the way up in the air..then your butt too up in the air..then they have you turn to the right…and then turn to the left..then turn back to your right…ok turn back to your left..ok now we are going to do full circles quickly on this little table and try to keep yourself covered in the mean time too.. so here I am doing circles on the table over and over again and over again..all the while I'm trying to hold my gown in place..at some point I think I said forget this it isn't even possible and just kept rolling…They were trying to get the dye all over in my body. Think they did a good job of that.. So then it was time to take the images on the CT scan to check to see if there were any holes. I got the full lumbar done. I wasn’t going to have the full lumbar but when they found the leak in the neck area they decided to add that area in too. So you have to lay real still for lots of minuets..which wouldn’t be too bad but when you are on your stomach and have your head in a sheet and are told not to breathe deeply..you just kind of panic a little or I do anyways…and I almost hyperventilated. But I didn’t. Then came the painful part..They ended up finding 4 leaks plus they patch up the one where they went in so that makes 5 blood patches that they ended up doing but I actually got poked 6 times bc one they couldn’t get in on the one side so they went in from the other side. They gave me propofol  first..and that of course made me loopy….then they take a dropper full of blood for each patch out of my arm which had an IV in. They put that dropper of  blood back into my spine where they are doing the patch along with fibrin glue. and them combined form a patch over the leak in the spine. Can I just say that each poke hurts sooo bad..even though you have the propofol you still can feel it…they did one at the top of my bum and that one was well VERY painful..and I got a little snippy with them bc it was the last one and I was tired of taking my pain out on the poor sheet..and so they told me they would give me some more propofol and I proceeded to tell them that that wasn’t going to help with the pain…all the drs were like ok..this girl has had enough she just went from a quite shy girl to a little snippy girl…HAHAHA!!! oh well I don’t care..I was in pain and I couldn’t take it anymore. So after they finished up the last one I had to go to a recovery room for a couple of hours. Why do they tell you a bunch of important information when you are on propofol????  That stuff messes you up…that’s the same drug that Michael Jackson died on from a over dose. just sayin. So this dr proceeds to tell me all the dos and don’ts and all I remember was just leave me alone so I can close my eyes…please…..

So I did stay in the recovery room for about 2.5 hours. and still after that I felt like I was ummmmm……drunk basically. I knocked my water over all over the floor getting out of bed. Try getting dress feeling like that..I thought I was going to fall over and land on the floor naked…hahaha!!!

So we took off for home and it was suppose to be a 3.5 hour drive home…it took us FOREVEr!!! Rain..storms..bad storms..traffic..accidents..more backed up traffic..it took us 6 hours to get home!!!!! and of course we left the hospital thinking we have 4 hours to get home and get the prescriptions filled. bc they are every 4 hours and they gave me some right before I left the hospital. THAT WAS THE BIGGEST MISTAKE EVER!!!!!!!!!!  WE had to find a CVS on the way and get them filled..I was very nausea(which the one thing I remember the dr telling me right after is don’t throw up..try to not throw up…) and I couldn’t even move one little bit bc my back KILLED…….and my head…well my head was blown up and I couldn’t take it..it was pounding hard..and it was full of pressure. so we stopped so I get them filled and get them in me…I wasn’t going to last another minute.

So now onto the recovery..the recovery is hard. I was told that I couldn’t lift anything for a few days. No strenuous activity for a few days. Basically just take it easy. So Saturday my neighbor and I had already planned on having a garage sale and she knew I was supposed to take it easy so she said I could just sit there..and that is basically what I did..But I didn’t last very long..bc after a few hours I was really nausea I just couldn’t take the pressure anymore..I had to go lay down…Saturday was the worst day ever. no kidding. the rest of the day went down hill fast. I couldn’t get off of the couch. I was extremely dizzzy and that made me really nausea…and my head and my back ….I just couldn’t take it…the meds werent cutting..thank goodness for my sweet good friend that brought us supper.. bc we would have been eating cereal again for supper. So Saturday night Jared camped with the older three girls out back and then Sunday morning when the twins got up he had them go out side too and they spent all day outside. He cooked them breakfast on the fire..which turned out to be lunch for them by the time it was done..and then anytime one would come inside Destiny would come back inside and say what are you doing inside Dad said you had to stay out side and play..they had church around the fire..played the guitar and sang songs..I think they all had a good day with dad too..and I had a good day just relaxing on the couch. I cant get off of the couch for very long before my head is killing me and my back too..so just have to relax and lay down..and trust me it is KILLING me just to do that..I have sooo much that I need to get done but I cant..and so it just sits…and I guess it will wait for me. bc I don’t want to overdo it either or I will undo the patches and it will be all done for nothing.

So today I still feel like my head is full and it hurts so I will lay on the couch all day bc its really helps if I lay down with the head pain anyways…and I just feel so tired..have all weekend..I sleep on and off all day…so that’s about it…As soon as I get past the recovery I will should see improvements in my symptoms. The Dr. (neuro radiologist) that did the procedure was really optimistic and thought that this was really going to help me. and she thought the chiari might go back up and that would mean that the blockage would go away too if it went back up and that would mean no brain surgery..bc I wouldn’t have all the symptoms..so that is what I am praying for….even if most of the symptoms went away that would be awesome too..So we wait and pray right now.

will update again in a few days..

Updates on Me

Oh the storms we have to endure. or I have had to anyways. From Erb’s palsy or brachial plexus(something I was born with), to Brielle’s mystery knee problems, to down syndrome, to hip dysplasia, and now to chiari malformation. and everything in between.  I've had my share of trails and tribulations with 5 different conditions under my belt now. I expect it now though. But with each one it has been a life changing condition that has changed me for the better. and yes right now I am in the midst of the storm and am not feeling that great but God will bring me out of it one day in his time. The sun will shine again. There is a reason why God makes us go through these storms. We just have to trust in his plan.
(This blog is about my life, family, and Avery. I originally started this to keep everyone updated on Avery but came to realize that I didn’t want to just focus on Avery and Down syndrome. This is my personal blog and I blog about anything and everything that affects us as a family not just Avery. So with that being said there are going to be some posts on me..and my journey through this diagnosis and living with it..just keeping it real. Maybe one day I will tell about my struggle and dealing with my erb’s palsy that I have had since birth too..who knows. )
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To read my first post about my diagnosis..go here
So after my first MRI my neurologist ordered another MRI a spine CSI flow study to determine how much blockage was going on. The nurse called me back and told me it came back normal. So I was thinking that  my chiari cant be that bad.maybe. So when I went back to the neurologist at the beginning of March I took with me the cd that had both MRI’s on them and she went over them with me. She told me that my Chiari was measuring 3.8mm. Here is a picture. On the second one you can see where they are measuring it. 
THE SECOND ONE IS NOT MINE>>IT IS USED TO COMPARE MINE TO A NORMAL ONE>

So if u look at the next one you will see where they have measured it and you will see some of the cerebellum below the line. and you will also see a “drape” in my spinal cord. compare the two..that is what is causing all of my symptoms. You see it being compressed together..being squished so to say.

So after my dr looked at the second mri images she told me she does not believe that it was normal. she believes that there is blockage. that my spinal fluid is being blocked. So she told me that I had the weekend to find a dr that was specialized in Chiari that I wanted her to refer me to and let her know on Monday.
I actually had an appointment with another dr that was in Hendersonville, NC that was supposed to be really good but when I got my welcome packet in the mail it came with court papers. It all seemed to risky to me, and they didn’t take my insurance and I would have had to pay $900 just for the first visit. and hope my insurance would repay some of it. so I canceled that appointment after I just didn’t have a good feeling about it.
So after leaving the neurologist I went home and put my fingers to work. I was in for the LONGEST weekends of my life. I researched..and researched Dr.s. I had it narrowed down to Colorado, or Wisconsin to a Chiari center. and then I just felt peace about the dr at Colorado. and I left it alone. and so I called the dr on Monday morning and told her that is where I wanted to go. Well then  I found out it takes along time to get in. and remember I only have insurance until the end of July. (bc of Jared quitting his job and losing the insurance through his work. so I went on cobra for 6 months) Can I just say  I was so stressed out about this.  I didn’t know if I should go closer to my family or closer to my home. went back and forth over and over again.
So back to the computer I went. back to the fb chiari groups I went. asking questions. reading everyones posts. and so it all lead me to a Dr. Grant in Durham, NC. He is with Duke. He is spoke very highly of. A LOT of people love him. But he is only a pediatric doctor and  read that he only sees adults on a case by case basis. So I emailed him directly and stated my case to him and he wanted to see dr.s notes so I had my dr send them to him and he agreed to see me. So my first appointment with him was a month ago...
I drove up to see him..made my appointment in the middle of the day..bc it is a 3.5 hr drive up there and then to have to turn around and come back home but I figured it was worth it bc I knew he was experienced with Chiari. He went over my MRI’s also and said that he wanted me to have a full lumbar MRI done basically to rule out Tethered Cord and Syringomyelia which go hand and hand with Chiari sometimes. He also wanted to get a spinal tap done by his doctors up there at Duke. and the point of this test would be to test for a CSF leak in my spinal cord, to check if I have to high or to low pressure in spinal cord and to see how I adjust to pressure change. He also told me that in the end it would be up to me if I was going to have the decompression brain surgery or not. It is up to me and how much it is affecting my daily life.
I really really liked him..and he def knows Chiari..explained Chiari very well.and spent lots of time..didn’t hurry..so I went home thinking someday soon maybe  I will have my life back.
Two weeks later I had my full MRI lumbar scan which was last week.  Which is an hour and half scan bc it is 3 scans. hello…talk about almost not surviving that one. table moves back and forth and when things start going numb you cant move. so by the end of it my legs were numb and I couldn’t even feel my bum. and my head killed from laying on that flat surface. walked out of there with a start of a migraine. nice.
Got appointment at Duke University for spinal tap its next friday. at 8am.
Monday dr (my sc neurologist) calls me and tells me that I know you have an appointment with her in May but she wants to see you as soon as possible.  I said ok. did she get the results back from my MRI yet? the nurse tells me yeap that is what she wants to go over with you. when can you come in..I said anytime this week..ok see you tomorrow morning. ok then.
Talk about anxiety through the roof in a matter of seconds. I started freaking out..what did they find..is it good or is it bad??? lets just say it was a LONG 24 hours.
I went to go see the dr on Tuesday then and she told me I have a CSF (Spontaneous cerebrospinal fluid)leak up in my neck. which might be a good thing..don’t know how it got there..but the MRI scan picked it up which is unusual bc usually MRI scans don’t pick them up to much. I asked her what are some of the symptoms of a CSF leak …and she told me a headache laying down ..and goes away when sitting up. double/blurred vision. and a few other symptoms. So I now have a chiari malformation AND a CSF leak. Great. how can this be a good thing. She told me that if might make me better quickly but the only way to tell is do a epidural patch. Which  I will get an epidural and they will take my blood.and then insert it back into my spinal cord at the lower part of my back and it will supposedly fix the leak that is up in my neck. does that make sense??? didn’t think so..BUT she told me I will know with in 24hours if most of my symptoms are coming from the CSF leak or from my Chiari. She then went on to tell me that potentially the leak could cause blood clots in brain..yikes! scary! but no evidence of that bc she went back over my MRI brain scan and didn’t see anything.  But then she told me not to go ahead with appointment at Duke for spinal tap she said no. So she said she would email the dr up there at Duke. Dr Grant and see what he says and then get back to me. Well  I decided to email the dr myself bc I had his email and see what he says whether or not I should still come up on Friday or not. I wanted to hear what he had to say himself..bc I really trust him and what he thinks. He knows Chiari.  He told me yes to keep my appointment.
As I went home I reread over the report from the MRI scan and noticed something else on it that the dr never told me about so I called my mom and read to her the report. Her being a radiology tech comes in my favor sometimes.  Here's what we came up with…I have a slight curve scoliosis to the left… I was tested for scoliosis as a kid and dr said everything loooked fine then.  My mom and I figured it was probably from all the over usage and lifting that I do in my left arm to compensate for the right arm that it is starting to affect my spine somewhat and pull my spine a little bit to the left. I also have a disc herniation at t7-t8. No wonder I have had some back pain.  
How have I been feeling??? Well you don’t really want to know. Miserable. Im in pain every.single.day. I have head pain in the back of my neck .and yes I have to take something for it every day. I have to. I don’t have a choice. I wont get out of my bed if I don’t. so its either take something or stay in bed. and well with 5 kids..staying in bed isnt an option.  I alternate between tylenol, advil, aleve, and excedrin. and I have found biofreeze to work a little bit if I spray it on the back of my neck. They arent migraines bc my migraine medicine don’t even touch it.its pain..cruciating pain. my head feels like its going to pop or like it is in a vice grip and it just keeps getting tighter and tighter. and as the day goes on it gets worse and worse..I have my good days and my bad days and then my really bad days..and the good days are getting fewer and fewer..but when they are I am sooo busy catching up then. still have all the other symptoms that seem to be getting worse as the day goes on. like blurred vision..vertigo…tinnitus….numbness and tingling in hands and feet….cant sleep….bc when I lay down the pressure really builds up on the back of my head and really hurts just from laying down. There is supposed to be a pillow out there that is supposed to be really helpful but just havent looked into it too much. Memory confusion/loss..getting really bad. in fact got worse mother of the year. Destiny reminded me right before she left for school about her terrific kid ceremony that afternoon..and she came home from school and said so much for going to the terrific kid program mom…I FELT. HORRIBLE. in fact I went straight up stairs and just started crying and had a really good cry..and then I started getting so mad..I HATE CHIARI! and I HATE the control it has on my life. I hate that I cant remember things or even process what some people are saying sometimes..brain fog. Chiari is one of those disease where you look just fine on the outside but its affecting the inside and people can be so non understanding. they just don’t understand bc on the outside you look fine. come live a day in my house.ask my kids. ask my husband. see if I am fine. see if I am handling everything just fine. we all hate what it has done to me. But God has gotten me through every day so far. and he will continue to be there and be my strength when im so weak. All I can do is take one day at a time. and pray for a good day every day. and just not take the good days for granted and get through the bad days all with Gods help. 
So on this friday I am going to Duke University in Durham, NC (actually Thursday night we are heading up there bc apt is at 730am on Friday) to have a CT myelogram to patch the CSF leak. They then will screen the entire spine to check for more leaks The neuro radiologist will do a blood patch (to fix the leak) at the time of the myelogram and come home afterwards. not sure how long it will take or when we will get home. They told me I had to have someone come with me bc I wouldn't be able to drive back home so Jared is coming with. So after that with in 24 hours I will either be a new woman or the same miserable in pain woman. Praying for the the first one..bc I really want this to work and fix all.ok most. of my symptoms so I don't have to have the brain decompression surgery.

Kitchen Redo

I've been working on changing up some of my rooms in my house…One room at a time..and I just got done with my living room (haven't posted them pictures yet ) so then I moved onto my kitchen..here's my kitchen anyways…

Pinterest can be bad and good…you gets lots of ideas but then you want to do them ideas..but luckily Im a DIY girl and find a way to do it myself. and try to find a cheap way to do them too and if you follow me on pinterest most times you can guess what my next project will be by my pins…LOL!!!!!

Anyways I decided I really wanted a bead board backsplash and asked Jared about it..he immediately told me NO…he tells me His list is already to long and he don’t need another project to do…well never fear honey I will do it myself…you should of seen the look he gave me…HAHAHA!!!!  Turns out Home Depot will make cuts for you so I measured the length between my cupboards and countertops and had them cut my big piece of beadboard into cuts that length then.

So then I call Jared and ask him how should I go about cutting the width bc he took the saw from me..he tells me to use the jigsaw. I may or may not of googled what a jigsaw looked liked. But for the most part it went pretty smooth. Jared left in the morning and by the time he came home I was done installing it. Including caulking it too..Did u know that on a caulk gun they put a thing on there to use to poke the seal. huh who knew they also put a cutter on there to cut the top. My husband tells me it looks good from a distance. Ha!

BEFORE picture: (time for the green to go)

During the installation: Wowzer what a mess…lol!!

Check that out…..I am totally still impressed with my self still…LOL

My 1,2,3, containers..Goodwill find…score..added some vinyl to them..

Rearranged some of the appliances

Now unto a some more DIY projects to complete my kitchen…all of these projects cost me nothing bc I had everything already..wooohoo!!!

Number signs…..and a BIG chalkboard..

Reclaimed Pantry sign that I made but think I should of made it a little bigger..

another reclaimed sign

Last up…redo my barstools…no before picture..but they were a dark color and all chipped up..with five kids you can only imagine..they looked pretty bad..horrible actually. I had to reglue them back together first. For color I went with Country Gray chalk paint..if u have never used chalk paint..you need to get some.it is awesome. no sanding. no stripping. no nothing. paint right over it and it sticks. then sand if you want to distress it then clear wax on top to seal it all.

Closer look

Ta-da!!!  After!!!!