She is Recovering pretty fast!

            Avri is doing so good. She has her moments but her over all recovery has been amazing. I think she is just so dang tough that she makes it seem easier than it really is. Our biggest problem at this point is, she is so social that she is losing her mind just being here with me. Remember the infection and being off school for two weeks...Ya this is way worse.  I think she would rather go all day long with no pain medication just to be hanging out with some one other than me.  She did get the chance to go to her school today and say hi! She was so happy to see everyone. She also hung out with a couple of her "best friends" . I am sure they both got to see her shiny happy side. I got stuck with dark and snappy.   I am so happy that I can see her recovering and getting around more and more. She looks so good!

Home life & Before surgery & After surgery PIctures of Avris back x-rays

We came home Tuesday afternoon. It is great to be home for both of us.  I have to say what a great daughter Hattie is. She is just a great big sister to Avri. She cried and held Avri's hand while she was visiting her in the ICU.  She told her all about her days at school and stories to keep her entertained. 

She made sure all the other kids made it to the houses they were to go to after school. She too care of the puppies. She helped all the other kids get ready for school. She also helped keep things up around the house.  We had to switch Avri's room upstairs. Hattie had Avris stuff all moved into her new room and had organized everything for her.

Since the day we got home Hattie has been attached to Avri's hip. She is so eager to get her anything she needs. She is right there to steady her and to just sit next to her. She told me that she had a really hard time sleeping while we were gone and that she almost fell asleep in class a few times. 

So the first night Hattie asked me if she could sleep on Avri's floor. I said yes just because it was Avris first night home. I was worried about how much sleep she would get on a hard floor.  I went in to check on them about 10 minutes later and they were both out like lights. I had to keep up Avri's medications so I went in 4 hours later and then 2 hours after that, and 2 hours after that. Hattie never even budged.  I guess all she needed to know was that her sister was going to be OK.  Everyone always says how strong Avri is, but just as much so for Hattie. She really has had to grow up. She steps up when ever she is asked. She never complains. She just stays in the back drop of all the craziness and does what ever she can to make Matt's, Avris and My life better. 

I also have to say how grateful I am for opening your homes to my kids and for all the great meals. It may seem like a small thing but it has meant so much to me.  I always think I will be fine, I am capable of doing everything on my own and I certainly don't want to put any one out. I never realized how exhausting it would be to go in and out of Avri's room all day. Sitting her up, laying her down, sitting her up again, bathing her, dressing her, fixing a pillow that is just not right for the thousandth time.  I am happy to cater to her every need in order for her to be comfortable and to heal. It has been so nice not to have to worry about cooking dinner as well.  I feel so blessed to have all these neighbors whiling to jump in and help where ever they can. 

Now for the pictures! 

This is her Spine before the surgery. Notice how far inward her spine in curved at the bottom.  The curve in her lower back was at 85%

This is after her fusion. I am not sure how those screws are not poking things in there.  She gained almost 2 inches in height. She is very straight.  She keeps saying she feels strong!  The rods and screws are all titanium. 

Lessons Learned!

8-29-2001
Avri is doing so much better today. She has been going above and beyond what physical therapy has asked her to do. She has eaten real food today and held it down. Things are finally looking up. We are hoping to go home tomorrow.


Here is one thing I learned while I was up here or reminded of anyways. If you pray for patience you will be put in a situation that will require you to be patient. If you pray for courage you will be put in a situation that causes you to be courageous. If you pray for your family to be closer you will not be overcome with warm fuzz’s for each other but will be put in a situation that will bring you closer together. Pray for it all at once and you get…Well I have learned not to pray for it all at once!

Hit me with your best shot! Fire Away......

8-27-2011
I am not going to go into details, because it just gets to personal for Avri. All I am going to say is “she is hanging in there”. This poor girl is being put through the ringer. I have been trying to be positive and say tomorrow will be better, it can’t get worse right! I am learning it can always get worse. She threw up a few times last night. We had to give her a bath and the poor girl was so cold so the nurse thought she would go get a blanket all nice and toasty for her, so she could wrap up in it after the bath. This would only happen to us… “The blanket caught on fire”. I was not in the bathing room when it happened but it stunk so bad when we went in. The burnt blanket was in the sink where the nurse threw it to put water on it. All the other nurses came running because they thought the building was on fire. So in the end she did not get the warm blanket because the warmer no longer worked. Later on they decided that they needed to get another IV started but her veins are so deep and She is so swollen that the nurses could not find a spot to even put one in. So they called the anesthesiologist. She said she would come in and start one but her kids could not be left home alone, so one of the nurses went to her house to watch her kids so she could come up and start an IV. Very long night for everyone.


So by 9am today I thought we are going to start coasting now. Things can only get better (this is what all the staff keeps saying also) She did get up and walk. She did well, she was happy to see her cousins and their parents. She got a small nape in. Then the Belly ache came back and we were right back to last night’s issues again. Just when you think “I thought things were not going to get worse”…The power goes off. Avris stuff is all running off the emergency generator so for the first couple hours it’s not a big deal. It’s time to get Avri up, she is standing there and next thing I know I am covered in vomit. She shot from a good 5 feet all down the front of me. Thank goodness she has not eaten so it was mostly just water, (or I would have shot back) It was literally dripping off me. My shoes were filled. The nurse says “go down the hall take a shower and throw your laundry in the washer”. So I walk down the hall all wet and drippy just to turn around and walk back…ummm the power is off. I ended up spraying myself off in Avri’s bathroom. Maybe I am delirious from my sleepless night but all I can do is laugh about it. Matt was kind enough to bring me café Rio. (Everyone knows the dressing makes the salad) …well they put the wrong dressing with it. It was all I could do not to cry! Last night I ended up with a broken rubber band cooked into my cafeteria food dinner. GAG! So I was looking forward to something not from the cafeteria. It’s funny the stupid things that push you over the edge. I laugh when I get a vomit shower and when the nurse catches a blanket on fire but I have to contain the tears when I don’t get my ranch dressing. I need some sleep or a therapist!

8:3opm Friday, She is hanging in there, but would rather not be at this point. She is just miserable.

Friday day 4 update

8-26-2011


I think Avri is getting better. I think she had a better night last night than the night before. If you were to ask her “things are not getting better” So far we have been on a roller coaster today. One minute she is great the next she is crying. They call this the “Princess in the pea day” She can’t get comfortable no matter how she lays, she feels like she has something under her back. Her lungs are sounding better today and her fever is down. Physical therapy came in around 9:30am and got her up. She was able to walk about 20 feet out and back. She was cruising. “I think she thought she was going to be able to get back in bed when she got back" but to her disappointment they made her sit in the chair for 20 minutes. The nurses gave me permission to let her send a few people a text just to keep her mind busy. She tried to get up and get back into bed a couple times but she made her 20 minute goal. She crashed as soon as her head hit the bed.

As far as the rest of her care, she came out of surgery with an arterial line and three IV’s. Her arterial line was taken out yesterday. 2 out of the 3 IV’s failed today, so we are hanging on to that last line (keeping our fingers crossed it won’t blow) it’s not looking good. She is drinking ok, but her stomach won’t wake up so she has only had 2 small Jell-O’s to eat since Monday night. Her body is hanging onto a lot of fluid and she says she is feeling very bloated. She really is looking good despite all she is going through. She will be rolling down the hall in about 45 minutes to a regular patient room. She will be happy to have her phone back in her hands.

We were expecting her to be in the ICU possibly the entire visit. (I guess a lot of it has to do with staffing) she can have visitors in her regular room. (Any age) if you would like to come see her just keep in mind that she is still in a ton of pain and pretty drugged up. She is very slurred and sleepy. She will not want you touching her except to hold her hand. She still needs a calm quit room. She will not want anyone trying to sit on her bed or bumping it. She is at Shiners in room 15. Use your best discretion considering the things I mentioned. We are still on track to be home Tuesday. She may need a couple days to crash in the comfort of her own home. I will keep you all posted.

Day 3 back surgery 2nd update.

2nd update for Thursday


Avri is doing much better tonight than she was when I first saw her today. She had asked for her sisters a few times so Matt brought them up as soon as they got out of school. As funny as I have tried to be… I have not been able to produce the smile that seeing her sisters did. Avri held out her hands and just wanted to hold their hands and hear all about their first days of school. Of course the big question they all want to know is if Avri is taller than me now. Avri says “yes…I am so much taller than her that I look down and see the tops of her shoulders” (she was on a step) although I think she may have been looking down on me just a little bit when she stepped off onto the floor. I am sure as soon as she can walk the first thing will be to go measure. Hattie asked her if she felt like this surgery was worth it to be straight. Avri said “ummm NO …because now I can’t even move!”

As for me…I am doing good. I have been told “I am a strong woman” a few times. I have to say…I am not stronger than anyone else out there. We all at different times in our lives are faced with different challenges and they are all equally as hard. I look around this hospital. I see kids missing body limbs, some are bound to wheel chairs and some are in full body casts. I think how temporary some of my elements with Avri are and I am so grateful for the good times in between the trying times. I look around up here and think to myself “I don’t know how that mom does it.” I truly have it breezy compared to others.

I walked the girls out to the car tonight. I told them all goodbye, gave them hugs and kisses and put them in the car. By the time I had hugged and kissed Matt I looked back in the car at them and they were all silently sobbing. Giant tears running down their faces. My heart sank and the tears welled up. Then I switched it off told them to be brave and that I would make grandma sleep up here tomorrow, they all laughed and found comfort in that thought. As I was walking back in the hospital I thought to myself how many times today I have shut down the tears and pulled myself back together. “I think I am part robot” and I guess today I am grateful for that. I also know I draw strength from my father in heaven. Honestly in this situation there is no other explanation. I think of the poem of the foot prints in the sand. I like to think of 2 sets of prints I would rather walk side by side and just draw comfort in knowing I am not alone. I am sure those times when I want to fall to the floor because my breath has been taken away, my heart hurts and my legs are about to give out some one catches me and carries me until I recover. It is an unexplainable feeling. I can say I have tried to walk alone in the past. I have wanted to walk alone and I certainly thought I would never be carried. I personally believe life was not meant to be lived that way.

Day 3 back surgery

8-25-2011


. I walked in at 8am today thinking Avri would be in here asking for some breakfast and laughing. Nothing like that was going on. She was crying and paler. The nurse said she spiked a fever last night and that they thought her epidural had slipped out of place because they could not control her pain with it. Her bandage is just getting soaked with fluid. Her lungs have diminished (nurse’s words) she said that it meant she was getting fluid pockets on her lungs. They think Avri won’t breath right because it hurts to bad so she is only taking tiny, fast, shallow breaths. So they have been doing breathing therapy with her (they have a machine that they put on her face that blows air into her mouth. She has to push it back out forcing her to take deep breaths. They say that they think it is still high enough in her lungs that they may be able to stop it from settling in.

On a good note she is still being her strong obedient self. They have scheduled times with physical therapy to come in and help her sit up. She was in so much pain. Physical therapy came in and said they were going to sit her up. She never questioned them. She did everything they asked her to do. There were a couple times that her eyes got huge. Her heart rate would sky rocket then drop. They would tell her “stay with us” she would look at them and carry on. The dressing on her back was more saturated than they thought so they changed that while she was sitting on the bed (which took 10 minutes). Then they got her in a chair. She asked me in such a quiet whisper a couple times if she could please get back into bed. I explain how good this is for her even though it may be painful. She accepts it and continues to push through. She sat in her chair for the full 20 minutes. When they stood her up to put her back in bed the dressing was soaked again, so she had to sit on the edge of the bed again so they could put more dressing on her back. They said she sat up for a total of 40 minutes instead of the required 20. (Painful for her but very good for her lungs and the recovery of her back)

It’s been a few hours since I started typing this post. Avri’s pain is being managed much better now. Her epidural is leaking so they are giving her more oral pain medication now. I have been rubbing lotion on her feet and the nurse just helped me paint her toe nails all fancy. Everyone is doing their very best to keep her comfortable and occupied when she is awake. Her fever finally did come back down with the second dose of Tylenol. She is continuing to work on her big breaths as well. She has produced some pretty good coughs (which make the staff very happy) not so much Avri as the coughing is painful.

Back surgery day 2





 8-24-2011




She looks like she got her lips injected. She is puffy from being face down durring the surgery. she is hooked up to tons of stuff. At this point she has a big ball of tubes and wires that are all bunched up.



I walked into to the ICU around 8am today. To my surprise Avri was talking about the time I waxed her armpits to all the nurses. Apparently she had just had some tape ripped off her leg and they said it was a partial leg wax. I had to explain myself; yes…I did wax her armpits once. We mutually decided it would be better than me trying to shave her every other day in the shower during swim season. It was then her decision to just go all natural and do nothing. She has been trying to shave them herself lately. Needless to say she was feeling well enough to talk to the nurses about that one time.



When I was done defending myself I asked her how she was feeling. She said (in a weak but upbeat as possible voice) “I feel great” she looks good. I noticed her coloring was better and she was not as puffy. I watched as they rolled her over onto her side. It looked as though she had some good practice through the night. She stiffened up a bit (although it’s hard to tell because I am not use to her being straight) let out a small ouch and then relaxed again. I asked her if she wanted me to take a picture. She said “yes, and then send it to your mom and tell her I love her” I took the picture and I am standing there trying to talk to her and she says “did you send the picture and message to grandma yet?” So I had to leave and go send it. (There are no cell phones allowed in the ICU)



They said she would look thinner after being stretched out and straightened up. look how straight she is.  This is her first few seconds of sitting up for the first time.  



The physical therapists came in at 10:00am to sit her up for the first time. The goal is to just have her dangle her legs on the edge of the bed for 3 minutes. They had 4 people around her to help lift and guide her to the sitting position. She had a hard time relaxing and letting them do the work for her. She kept saying “do you want me to help?” They say back “no, no, no…just relax” They got her upright with ease. She never once made a sound or complained. As soon as they got her upright her face started to drain all of it color. (They warned me that she would more than likely vomit and pass out) We had the bucket ready and they were supporting her the entire time. One of them asked if they could brush her hair. To my surprise she said “yes”. She hates getting her hair combed or brushed. The next thing I noticed was how straight she was. Her front looked so flat and the huge S in her back is gone. It tugged at my heart because the bend in her back has become a part of her personality or something. It made her look (not like her anymore) I held it together long enough to take a couple pictures and then show them to her. I was supposed to be keeping her focused on something. She is going more and more pale as the minute clicks by then ….going, going…her blood pressure and pulse spiked then dropped her eyes start to roll and they lay her back down. It took a few prompts for her to breath. She is just laying there wide eyed not saying a word as the color slowly returns to her face. Then she says (almost in a whisper) “mom go send the pictures of me being straight to grandma” Phew…I can take a deep breath, I have a really good excuse to step out. I take the opportunity to go have my breakdown and then recompose myself before Avri has a chance to lose it with me. She sat up again a couple hours later and did even better. She never did throw up or pass out.



This is something you have to see to beleive. She is so straight.



I have been asked what it is we do differently with her because I do not baby her. All I can say is “ I have never let her give up and I always make her finish what she started no matter how long it takes or how difficult it is” other than that I don’t think I play a part. She just came into this world with some unbelievable gifts to touch everyone she is around no matter the cost to her.



I was able to talk with one of her doctors and he said she was looking better than could have ever been expected. He said all her past surgeries must be playing a part in her bravery and strength. He said he could not believe the little amount of blood she lost. She will not be coming home any sooner but she sure is making it easier on the heart strings.

She is done with physical therapy for the day and will just be resting. She is pretty tuckered out. Those 2 three minute sessions were exhausting. Hopefully she will just sleep for the rest of the evening in between being turned every two hours.



She did come up with a new signature hug. Matt was leaving. She went to hug him and realized she had to many tubes in her hands and arms and that it hurt to move her arms like that, so she pinched his ear lobes and said that was all she could do.



Day 1 back surgery

8-23-2011


After months and months of anxiety and the unknown Avri’s back surgery date has come up. I got a call Monday from Shiners Hospital. She said “we had a problem today in surgery with a kid’s antibody and thank goodness it was a smaller surgery, because if it would have been Avri’s we would have lost her.” She then apologized up and down but said we needed to come up with in the night to get Avri’s blood tested so they could make sure they had the exact match for units of blood she would need. They wanted to make sure there was nothing funky going on with her. So we made the hour drive to get her blood tested Monday night. After 4 pokes and a lot of manipulation of the tube the nurse finally got an IV placed in Avri’s arm. I told them I would flush her IV at home so they would not have to poke her again in the morning. We finally got home some time after 11:00pm. I could not help but think “this is not a good sign as to how things are going to go tomorrow”

4am Tuesday rolled around way sooner than any of us would have liked. Matt, Avri and I arrived at 6:00am. Avri has a touch of excitement mixed with a lot of anxiety. I want to turn around and run away and take her with me. It is hard to know this is not a life or death surgery so in a way we are choosing to do it. In the back of my mind I am thinking “I could lose her, 25 years of slowly going downhill and a big hump in Avris back is better than ending things now” but I have always said “if you can’t live life to your fullest potential then what is life worth”? Avri has been given the opportunity to improve the quality of her life by having her back straightened out. I need to support her in that. She has gone through the last few years of life hearing “Avri stand up straight”,” Avri sit up straight” We have done back exercises that frustrate the heck out of her. She gets side aches because she can’t get the full breaths that her body needs when she exerts herself to heavy breathing. She has also complained of back pain. This surgery is for her and I am going to see her through it.

She is given valium to relax but she still seems scared and anxious. We are taken down to “the basement” (seemed like it might be creepy) they had a photographer that took pictures of the curve in her back. They take pictures for the parents to see the before and after. They also use them for clinical studies. When we got back to her room she was given more meds to relax a bit more for the ride to the “holding room” I did not think it was working until they started to wheel her bed down the hall and she said “ya, this spine I have just doesn’t work very good, I can’t even walk with it” We all laughed out loud. I knew then the meds had kicked in. We were taken to the holding room for about 5 minutes and then we said our emotional goodbyes.

Matt and I were verbally prepared for this surgery. We were told this surgery was going to take about 8 hours. They use a machine during the surgery that takes the blood that is being suctioned up spins it, cleans it and puts it in a container, then is put back into her body. This process damages the cells so usually they still have to give more blood. They told us they had to units of perfect match blood waiting for her. They said she was going to come out of surgery in a lot of pain. She would be throwing up, tired, not herself, crying list goes on and on of what to expect. They repeatedly tell us “This is a big surgery” “this is the biggest surgery we do here” I wonder a few times if they are actually trying to talk me out of it, but then they end in “but it will be totally worth it”

We have been saying for the last few months. “we must have a big blessing in store because it has been one thing after another with home life. I was talking to a friend and said “I feel embarrassed to even talk about all that has gone wrong and all the stressors because it seems made up, I mean really….who goes through that much?”

Avri went in for surgery around 8:30am we got a call from the OR at 11:00am. “Avri went to sleep beautifully, she is doing wonderful. We are starting to put in the implants. We will call you in 2 hours” 12:45 they call again. “The hardware is all in. She is stable and doing great. We are closing. She will be out in 45 minutes.” They call again at 1:30pm “She is in the ICU; we will call you in about an hour to come down and see her. ….The surgery only took 5 hours. (Our first big blessing)

The surgeon came walking in the room around 2:00pm. He said “everything went so much better than ever could have been expected” “If all my surgery’s went this smoothly, I could do them every day for the rest of my life and be fine, there are some of these surgeries that turn his hair gray” He said “She is a dang strong girl” he said they got her straighter than they thought they would be able to. He also told us that she did not bleed as much as they expected so she did not need any blood other than her own. He placed 2 rods, 20 screws and 2 hooks. They did not change the amount of vertebra they were working on. They did not cut any corners but the lack of complications and everything just falling right into place took 3 hours of planned time off the clock. He did say for such a big girl this was all very unusual. (But great for a change) You can imagine my relief. All I could think of was that big huge blessing that we were waiting for and seeing it right before me now. I was hearing all these doctors saying how impressed they were, how this could not have gone any better, how strong Avri is. This is just what we all needed.

The anestisiologist comes in next. She is a very matter of fact lady but very kind. She said how nicely she went to sleep and how easy she came off everything. She tells us about the epidural they placed in Avris back for pain and about the pain pump she is on. She goes on to tell us that Avri was already awake and talking. At his point she starts to get tears in her eyes and she is choking up a bit. She says “I was telling her about the pump and explaining everything to her. I told her I was going to go talk to her parents now. Usually kids just say thanks all jumbled up but… As I was walking away she said “please tell my mom and dad how much I love them, then she closed her eyes and went back to sleep.” She said in all the 20 years of doing this nothing like that has ever been said. She said she was so unbelievably touched. She was so emotional at that point she got up and walked out without another word.



Matt and I went in to see Avri about an hour later. She was awake but groggy. She was very alert and knew what had happened. She never once cried or complained. She said she was good. It was a huge relief to see her moving all her fingers and toes. These surgery’s usually have monitors that they place on the head for spinal cord injury warnings, because of Avri’s shunts this part of the monitoring was not used. It was not a for sure thing that damage had not been done until she moved. We only stayed for about 5 minutes as the care team said to let her rest. I was in and out for the remainder of that evening. She had asked to watch a movie; she asked for some chap stick but for the most part was quiet and content. She did keep asking if they could roll her over because all this laying on her back was killing it. Around 10pm they rolled her for the first time. I was advised not to be there for it as it would be hard on me making it harder for her. If I could imagine the scene…She would let them roll her without complaint, if I was there I would have cried and lost it. She would have cried and lost it with me. I tend to have that effect on her. Against where my mind and body wanted to be I stayed in her room down the hall. I woke several times in the night thinking she needed me, hearing the door open and footsteps coming in but it was all in my head no one came, so I stayed where I was told to stay.

She is going in for back surgery

            This is purely just informational and may come as a shock to some.  I am sure by now most of you  already know though.  Avri is having back surgery. She has been having problems with her back for a number of years now. She has days where her back is stiff and sore but the most noticeable thing for her and us as parents is her posture (more so the hump in her back).  After noticing I was not the only one telling her to stand up straight I took her to a back specialist. This doctor was very quick to want to do surgery on her. I freaked out and got a second opinion from a spine specialist at Shriner's hospital. "they are supposed to be the best spine specialists in the world" this surgeon agreed that she needed surgery. This appointment was back in January and we have been waiting for our date ever since. We got a call three days before vacation that she would be going in August 23rd.  
             This surgery will straighten out the big hump in Avri's back the medical term is "Kyphosis".  She will be having rods and screws placed through out the length of her spine. They say she will gain at least 2 inches of height.  "pretty crazy to think she will come out of this being taller than me"  Although Avri is "so excited" we are very nervous. This is going to be a very scary surgery and a very tough recovery.  In talking with her surgeon. My understanding is that there will not be an opportunity for visitors while she is in the hospital as she will be in the ICU the entire stay. She will have an around the clock nurse as well as many appointments with physical therapists.  Avri will be in the hospital for at least 7 days and she will be out of school for at least the first month. I will do my best to keep everyone posted on what is going on with her through this blog. I have to say on my part that "phone calls"... I know have the best intentions, but do make my emotions run much higher.  As I do love each and everyone of you that has concern for my daughter and the rest of my family.  Please when this day comes keep her in your prayers, Pray that I will have the strength to support her and help her through this and know that through every ones prayers and faith we will be fine! If all else fails check her blog for updates!  I will not be leaving Avri's side to take calls (aside from family)....no offense!

Just kind of funny, sleep deprived mom.

            I have not slept well since last Friday. I have been stressed out, Matt was out of town. BLAH, BLAH, BLAH... So Wednesday Avri was not feeling well. She had a few small seizures. She looked pretty pale, she was complaining of a head ache.   

ME , I am usually right on top of it. I sleep lightly so I can hear her if she stirs, I am up all night worrying. I jump at the slightest bit of noise or change in breathing after a day like this. WELL not Wednesday night.  I woke up yesterday to her standing over me hands on her hips saying...  


"Do you care now"? 


 Me "Avri I always care, What are you talking about"?  


Avri  (all mad and with a lot of attitude)..."I came in last night and told you I could not stop throwing up!!! (head bobbing all around)  DO YOU KNOW WHAT YOU SAID TO ME?"  


Me (still all disoriented and half asleep) "I do not remember you coming in at all lat night, you must have been dreaming" 


 Avri (still has her hands on her hips and that angry scowl that she has) "NO I was not dreaming, I was throwing up" ... " You sat up looked at me, and SAID that SUCKS!!! and then you went right back to sleep"  

I said "I did not" 


 Her voice elevated, but she now has a smile on her face and is snickering "you did to"  Then she says  "I left all the lights on when I went back down stairs"  


 ME "hum...I did get up around 2:30 and shut all the lights back off"  


Me "so how are you feeling now?"


Avri "I feel fine" "I just can't believe you did that!"(she is doing her shoulder shake laugh as she walks out  and says "You must have been really tired"  


Avri tends to remember the things that she can make fun of me for! This will be one of them. No harm done and she is OK thank goodness.  I let her sleep in today and then took her to school after a day of a lot of sleeping yesterday. She seemed to pull out of it and is feeling much better.

She is having seizures again!

I have talked to a few people lately that don't understand what to look for in a seizure. Most people don't realize that there are more than grand mals out there.   Avri gets a strange tingling pain most of the time in her left hand, some times in her throat, some times she asks me what that nasty smell is. She most always goes totally pale. Some times not often she get confused with her feelings and tells people she hates them or  hates what they are doing.  She also does this swallowing like her throat is dry. She most always wants a drink. Partial Seizures

Partial seizures occur in just one part of the brain. About 60 percent of people with epilepsy have partial seizures. These seizures are frequently described by the area of the brain in which they originate. For example, someone might be diagnosed with partial frontal lobe seizures.

In a simple partial seizure, the person will remain conscious but may experience unusual feelings or sensations that can take many forms. The person may experience sudden and unexplainable feelings of joy, anger, sadness, or nausea. He or she also may hear, smell, taste, see, or feel things that are not real.

In a complex partial seizure, the person has a change in or loss of consciousness. His or her consciousness may be altered, producing a dreamlike experience. People having a complex partial seizure may display strange, repetitious behaviors such as blinks, twitches, mouth movements, or even walking in a circle. These repetitious movements are calledautomatisms. They also may fling objects across the room or strike out at walls or furniture as though they are angry or afraid. These seizures usually last just a few seconds.

Some people with partial seizures, especially complex partial seizures, may experience auras – unusual sensations that warn of an impending seizure. These auras are actually simple partial seizures in which the person maintains consciousness. The symptoms an individual person has, and the progression of those symptoms, tends to be stereotyped, or similar every time.

The symptoms of partial seizures can easily be confused with other disorders. For instance, the dreamlike perceptions associated with a complex partial seizure may be misdiagnosed as migraine headaches, which also can cause a dreamlike state. The strange behavior and sensations caused by partial seizures also can be mistaken for symptoms of narcolepsy, fainting, or even mental illness. It may take many tests and careful monitoring by a knowledgeable physician to tell the difference between epilepsy and other disorders.

Generalized Seizures

Generalized seizures are a result of abnormal neuronal activity in many parts of the brain. These seizures may cause loss of consciousness, falls, or massive muscle spasms.

There are many kinds of generalized seizures. In absence seizures, the person may appear to be staring into space and/or have jerking or twitching muscles. These seizures are sometimes referred to as petit mal seizures, which is an older term. Tonic seizures cause stiffening of muscles of the body, generally those in the back, legs, and arms. Clonic seizurescause repeated jerking movements of muscles on both sides of the body.Myoclonic seizures cause jerks or twitches of the upper body, arms, or legs.Atonic seizures cause a loss of normal muscle tone. The affected person will fall down or may nod his or her head involuntarily. Tonic-clonic seizurescause a mixture of symptoms, including stiffening of the body and repeated jerks of the arms and/or legs as well as loss of consciousness. Tonic-clonic seizures are sometimes referred to by an older term: grand mal seizures.

Not all seizures can be easily defined as either partial or generalized. Some people have seizures that begin as partial seizures but then spread to the entire brain. Other people may have both types of seizures but with no clear pattern.

Society’s lack of understanding about the many different types of seizures is one of the biggest problems for people with epilepsy. People who witness a non-convulsive seizure often find it difficult to understand that behavior which looks deliberate is not under the person’s control. In some cases, this has led to the affected person being arrested, sued, or placed in a mental institution. To combat these problems, people everywhere need to understand the many different types of seizures and how they may appear.

Life on the mend!

            Avri is doing great. She went back to school last Monday.  The only time she complains is when she has to go to keyboarding at school. She sent me a text on Monday this week asking me if I could come pick her up. I text her teacher and he had no idea she had sent me the text. So when I text her back and asked her why. She said "because I hate keyboarding"  Sad for her. I made her stay and finish out her day. She complains on almost a daily basis now that she needs to go to the eye doctor before she can go to keyboarding because she can't see the book. Funny thing is...her keyboarding book is the only one she can't see.
            She does seem to burn out a little faster than before, but I would imagine she is still recovering.  She is looking forward to summer break for the first time since I can remember. She loves school that much!
            She also has been babysitting here and there for a neighbor and had some birthday money she saved up. So her dad just ordered her an adult tricycle (he paid half). (she had one built for her out of an old bike a cpl years ago, but it never did work right.The chain would never stay on, and it would not shift gears)  I am looking forward to seeing her ride it!

Silence is the key of comfort!

            I went to bed really worried last night. In the past most of Avri's big seizures came around 5am. I finally fell asleep around 1:30am...well that was the last time I looked at the clock. My night was full of screams and my kids yelling out "MOM". I got up once around 3am and then again some time later, sat up a number of times. SILENCE...all was good and calm in all the minds of my kids. The only screaming and yelling out was in my own mind!  

            As I go through the challenges with Avri's health and my crazy out of control son and my  4 other  children. This is a great reminder quote! DON'T GET ME WRONG HERE... I love being a mom but it has come with great challenges! Motherhood truly has been about the moments! It is frustrating to get up in the middle of the night to make rounds, but there is also a moment to take in when you see your peaceful children in a restful state.  It can bring you comfort and piece.... kind of reminds you where they came from!


"Recognize that the joy of motherhood comes in moments. There will be hard times and frustrating times. But amid the challenges, there are shining moments of joy and satisfaction. " By M. Russel Ballard

Maybe seizures are going to be a new part of life Again.

            Avri has been doing so good. I talked to her teacher today about maybe letting her come back to school a day early. She has a couple days worth of antibiotics left and her course is done. She has been following me around so irritated all this week. The fun is over for the both of us. She just wants to go back to school. She loves the social stuff. Tonight I had her run something  over to a neighbors house and all the sudden she is having a partial seizure. The neighbor walked her home. She had this slight body bounce going. she was rubbing her fingers on her button on her pants, she was shaking and was white as a ghost. She said her hand and throat hurt. I was able to sit her down and had her say her alphabet a few times, then try backwards. Her color slowly came back and her speech became quicker by the third time around of alphabet repeats. She came out of it.  She had weird hot flashes for about the next hour (She was rubbing her face so violently I thought she might rub it off) She was in and out walking out side to cool off then right back in because she was cold. She finally calmed down and seemed normal again.  She is a bit more shaky than usual and that is a worry!
              She came in before bed time and told me "I set my alarm for 6:30 because I am going to school tomorrow". I told her "she was not".  That did not set well with her. She asked me why and did not seem like she understood my explanation.  I am not sure what to think at this point. I guess maybe it is time to see a neurologists again. She has an appointment with neurosurgery in a couple weeks for another scan. The seizures scare me to death, so we will see what happens between now and then.      

Part 2 of "little big sister story!

            Here is what I was told!   Hattie has a mass in her brain! Neurosurgery is no longer sure what it is. They want to operate to remove it.  Here is a list of the cons of not doing the surgery.
At this point they were not sure what exactly it was, so cancer would surely kill her.
This mass appeared to have a crust around it...this meant that if it was blood vessels like they originally thought, it had leaked. The crust was blood that formed around the mass.  If this was the case it could continue to leak. Eventually this would lead to a massive stroke I was told between the age of now to 24. A massive stroke could cause a number of problems including death.
            If we chose to do the surgery. The risks were. Lose of eye sight in the one eye, memory loss, (which included identity, loved ones, all motor skills)  The best way to describe it would be that they were erasing her hard drive and I was going to have to start all over with everything I ever taught her.
            As parents the thought as Hattie's parents were. We could not go day to day wondering if this would be the day she was going to throw a clot in her brain. We had seen how resilient Avri was. Kids in general are very resilient. Hattie was a fighter. Her will to run, play and just live life was to great for her to not make it through this surgery with a full recovery.
           I did the one thing I could do. I shaved her head! I let her cut it until she was done and then I gave her the clippers. We together made it a fun event instead of of trauma on both of us.  I asked my church ward to have a day of fast and prayer for her. I left the rest to the hands of the surgeon and God.  The surgery lasted 5 hours. I got updates about every hour and a half. " we are still dissecting the brain, she is stable, vitals look great, we will call you in about another hour and a half"  The last call in the waiting room that came through for me " Hattie is out of surgery, everything went well, the mass was leaking blood vessels, we showed seizure activity in that spot once we got to it. She is in recovery they will call you in about an hour to go see her" "we still do not know her functioning level so prepare yourself".
          I kid you not...Recovery paged over head 15 minutes later. This is what it said "we need the mother of Hattie Davis to recovery stat!' " She is yelling for her mother and her yellow blankie"   I can not tell you the joy in my heart at that very moment!  I knew she was OK. She knew me and she knew her favorite blanket.  I ran down the hall, their was a lady waiting at the door for me and brought me in to Hattie. O...She was mad. She was so mad "why did I do this to her? What Happened? This hurts! Take me home!  I cried and kissed her and thanked heaven above for not changing her!  The surgery required the surgeon to remove the entire left side of Hattie's scull, so she had a lot of swelling in her face. She woke up day 2 and yelled "I'm blind" it actually was funny because she was smiling as always! Hattie was expected to stay at least 1 week in the hospital. She refused to do anything they asked of her unless she could just go home. I was able to bring her home after 4 days.  I can say the one thing that changed!  To this day Avri has a sister who understands what she is going through. Hattie has stuck up for Avri and sympathized with each of her surgeries. Not only for Avri but for me...as she was able to finally see the whole picture.

The day she went home

Nothing's going to slow her down
        I took Hattie in for her 1 year follow up and the MRI showed nothing. The surgeon said usually they can see scarring but it was as if she never had the mass in the first place. She is almost 11 now and she is still just as hard headed and determined as ever.   

This is little "big" sisters story!

            Avri has a sister that is 3 years younger than her. Her name is Hattie.  I always said from the day Hattie first starting kicking me in the womb that she was going to be a fire ball.  To this very day "I was right".  Hattie was born and from that moment on she wanted me and only me. She wanted my world to revolve around her. She demanded it.
            Hattie struggled when Avri was in the hospital because it took away from her. Hattie would come up to the hospital. From her perspective she saw, video games, movies, arts, crafts basically anything you want you get.  Primary Children's hospital will go out of their way to make these kids happy. Hattie was 3 at the time and she did not understand that all that entertainment and the treats all came at a very painful cost.  With each of Avri's visits Hattie struggled. She would get mad at Avri. She thought "this is not fair" She would ask when it would be her turn to stay in the hospital.She also felt hurt from me that I was favoring Avri over her.  Most kids at the age of three really don't have a sense of true pain. You can show them the stitches, you can explain until you are blue in the face.   It can't register as deeply as it should because they don't know any better.
             I noticed that Hattie was becoming more and more unruly. She also had started these episodes where she would turn white as a ghost and she would make this swallowing motion as if she was trying not to throw up. I can't count the amount of times I would pick her up and dash to the toilet and hold her over it.  She would almost instantly look at me (very confused) and say "what are you doing"?  She never did throw up!  I was pregnant with the twins at the time and I was so sick. Matt (her dad) took her to a doctors appointment.  The nurse came in and took all the notes. She asked why they had come in. Matt explained that she seemed to be having these episodes where she would go pale and then seem like she was going to throw up and then she would be fine.  SO then the doctor walks in for the exam and says "So whats going on Hattie?"  She replies "MY BOOBS HURT!"   Matt very quickly throws out "my wife is pregnant"  After a brief exam, The doctor says "She is mimicking her mom"!    As funny as that was, I was not convinced that she was mimicking me.  I began to research on the web. I found that the episodes she was having sounded just like a type of partial seizure. I took her to a different doctor and he was not confident that I was right but agreed enough that he ordered an MRI.
            Hattie was to young to hold still for an MRI so she was sedated for the imaging. I was still sitting with her in the recovery room when the doctor came in and told me she had a small mass in her brain.  Of all things that was the last thing I expected to hear.  He told me it looked like a hemaginoma (this is a big mass of blood vessels)  I was not told more than that.  I drove home a teary mess. Not only was I dealing with a new medical problem but I was pregnant with twins and my hormones were crazy!
           The following day I set up appointments with neurosurgery and neurologist. Hattie had a quick EEG. The test showed no seizure activity. Then we talked with neurosurgery. They wanted more studies. So Hattie finally got her wish. She was admitted to Primary Children's Hospital for a week long EEG. She was hooked up to a million wires and her head was wrapped in gauze. She was not allowed to move except to go to the bathroom for 1 week. Let me tell you how fun that was.  Nightmare for both of us!  The bad thing with all that was more than anything Hattie did not understand Avri's  pain issues because she spent the time in the hospital now and she did not get poked...Not once!  Hattie's week long study came up with nothing. We were told not to worry and that she would be fine. Go home and forget about it.  OK...hard to do, but we did.
         A few month had gone by. It was 3 weeks before Christmas and I got a call from neurosurgery.  The team had been reviewing imaging for learning purposes and in the process came to the agreement that this mass in Hattie's brain may be some kind of cancerous tumor. The doctor said "it looked like it may actually have a crust around it" Which would indicate tumor instead of blood vessels.  I was told they wanted to operate after the holidays. I was to shave her head 1 week before Christmas just to give her time to get use to the bald head.  He explained that this would be a lengthy surgery and in a part of her brain where senses and memory were controlled.  They wanted her to wake up with the least amount of confusion possible.      

She's still going strong!

            Avri is doing so good. I am so amazed at the instant difference when her shunts get blocked and then are fixed again. She would love more than anything to be back at school, but I am enjoying spending this time with her.  Most of the time when I see her the rest of the kids are home as well and is all shared time. The one on one has been very renewing for me.  I think it has been very insightful for her as well. She has been following me around and helping where she can. Yesterday she said "mom! Is this what you do all day everyday, is just clean the house?"  Later on in the afternoon she asks, "Mom is Tallon like this all day?" Me " Yes Avri Pretty much" Avri  "I feel sorry for you!" She must think that I relax all day and all heck breaks loose when she comes home. .  I never thought of the way the kids all see me. They are all so use to being home with all 6 kids that they don't see much of me except for the busy mom in a loud house.  I have seen a new side of Avri and I think she has seen a very different side of me.  I am all caught up on the things that fell behind while I was not here, so we can spend some more quality time together now. I honestly just wanted to get back to my schedule and felt put out that she was going to be home for these 2 weeks , but I have a feeling I am going to have a hard time sending her back now. She is a breath of fresh air to me.
            I got on my treadmill Monday and then on Tuesday when I got on it she just stood there and watched me, so I finally asked her if she wanted to get on. She said "yes". She walked an entire mile on an incline of 2. Not bad for being sick as long as she has been.  So we made a deal that we would both put in our time with the treadmill and today she was the first one on. She did not last as long. She was less than a quarter short so I told her she should go for the mile. I turned the speed down and the incline and she was able to finish.   She gave me the strength to run a exhausting 11 minute mile which is pretty good considering I have not been running, but I figure that mile for her today walking was pretty close to my mile of running.
            She was able to soak in the bath after wards and I finally got to wash her hair. The water was so orange from all the blood and antiseptic. I had to change the water to rinse her off.  I think just getting that hair of her washed made her feel ten times better.  She has her glow back!
              

Still going strong!

            Avri is still doing good. She is up and alert, trying to be mom and asking what she can do. This is the first time in her life I have come home with a prescription for pain control. I was shocked when I saw a full bottle. I just assumed it would be 2 or 3 pills to get her through yesterday. The surgeon said she was going to be in a little more pain than usual because of the new hole in her scull and the infection was going to make her uncomfortable. She is insisting that she dose not need any pain medication....She is a tuff cookie!  I made her take one last night before bed because in the case that she is lying, so she dose not have to go back to the hospital. I would sleep better knowing she was not in pain. She is still not showing any side effects from this infection they say she has. I am still questioning weather the test was contaminated or something. Still going to follow protocol, but this girl is ready to go back to school and it going to have a very ruff next 2 weeks staying home. It is hard for her to understand when she feels good.
          I told Matt yesterday, I have just been hanging out at the hospital and I feel like I have to recuperate from something big. Funny how the mind works. He said he felt the same. I guess we are probley both just exhausted from lack of sleep but the worry must drain us. We have also both come down with colds. Matts is much worse than mine, but we both feel like we will never be caught back up on the missed sleep. All the other kids are just glad we are all home. Situations like this sure do make the family bonds stronger. The kids all just want to play together and include everyone. They have all gone out of their way to clean up and lighten my load as much as possible. I had to ask my little Abby to sit down with me last night as it was 10:00pm and she was just cleaning away. She kept asking what else she could do for me and I would tell her to just relax. She would find something else. She went as far as getting on her hands and knees to scrub the kitchen floor. I must be doing something right because I have an amazing set of kids. I also have amazing friends, family and neighbors....Thank you so much for all the help and support.

Lets see if we can stay home this time.

            We brought Avri home today. She slept peacefully last night. She had a CT scan and shunt series today. Everything looks great. She had a nice big breakfast and was able to hold it all down.  We were discharged and are now home.  Infection and disease control said we had to keep her home from school until her antibiotic course is over (which is 2 weeks) I am so not convinced that she has this c-dif that they are so concerned about but I will follow the precautions just in case.  Hopefully this is the end for a long, long time. Thanks to everyone who has helped out and supported us through all this.

She is out of Surgery!

           I just got a call from the surgeon. I am still sitting in the surgery waiting room. He said the surgery went good. The right shunt was totally blocked. He  used a new GPS system called the stealth guide to get a better position inside the ventricle. He ended up moving the sight down about a centimeter, so he had to drill a new hole in the scull and put in a  whole new system.   She will be in recovery for about 30 minutes before they call me down to see her.

She is really going in for surgery now.

           Around 10:00pm Avri started up with another head ache. She was miserable all night. She ended up getting loratab and zofran again to help keep her more comfortable. The attending nero surgeon was finally able to see her at almost her worse today during rounds. He ordered another CT (which showed bigger ventricles) We are just waiting for them to come get her. She will have her right shunt fixed and repositioned. 
          Another development...Yesterday they were still concerned about her bowels. I told them she said she had a bowel movement, but they said she may not be on the neurological level to know that for sure. It was totally ridicules but they ended up giving her a suppository and an enema anyways (just to rule it out) . So then they decided to take a sample once she started going. (because it was pure water) I was thinking what do you expect? So I wake up with a no contact order on the door (anyone who comes in the room has to wear gloves). They say she contracted CDIFF (some kind of bacterial infection)  They said that she just barely got it because she is not showing signs yet other than the runny stool (which is their fault)  but warned me that she was going to get really sick. They are going to have to treat her with a 14 day course of antibiotics to treat it.  This infection does not effect her surgery at all it is just another issue we get to deal with.  In the whole picture in my mind...if they would have treated her shunt issues a few days ago she would not be dealing with this infection now.        

Just hanging out in limbo!

            The situation is that Avri is feeling great again. I am OK with this (her feeling better) but the yoyoing is killing me. The surgeon came in and talked to Matt while I drove the kids home and he basically said he would take her back right now and fix the shunt because they know it is not working, but It could just be blood working its way through and that it could resolve its self.  The nero surgeon said that it would be on us if nothing was wrong or if something went wrong though because surgery is against his recommendation. ...So what parent wants that decision to be on them?  I am so confused at all this and all the opinions of everyone  and Avri being fine one minute and in serious condition the next.  I am in no condition to make any decisions right now.   so she is eating and up. They are NPOing her again at midnight and going to make a decision again in the morning.
            The hospital has these therapy dogs that go around and visit the kids. This dog was so cool. He laid on the bed with Avri and when it was time to go the trainer said" Pray for Avri" the dog sat by the bed put his paws on the bed, put his head down and barked twice.

I am going to rip someones head off in a minute.

            The nero surgeon just came in to see Avri before surgery. She was smiling at him as he was talking to her, and was able to answer his questions. Any of you that know Avri this is not unusual for her. She will smile up until the minute she throws up on you!
             He said "he was not doing surgery on her "...."she looks to good"  He totally discounted the way she has looked and everything else that has gone on. He wants to look at her again this afternoon and see how she feels. She is still NPO orders though. If she looks good at lunch time then they will just feed her and wait and see how she is until tomorrow.  I have a very angry nurse and a couple residents seem to be frustrated as well.  So much for the plan and the results. If they don't come up with some thing and stop doing CT scans and xrays, we are going to be dealing with cancer or extra body parts because of all the radiation.  Welcome to our roller coaster ride!   If I was the swearing type this post would have an advisory for language on it right now.

She's going in for her 25 shunt revision/brain surgery

Avri went in for her high resolution CT scan at 6am. Nero surgery came in at around 7am and said "her right ventricle did not go down at all after opening the valve up last night. This means without a doubt her right shunt is not working at all and needs to be replaced already. They are saying the spot where the main catheter is sitting inside the ventricle in her brain is no longer a good spot, so they are going to move the whole thing. Retracting the entire existing unit is move evasive and risky than just replacing clogged valves but hopefully it will prevent the same thing from happening that just happened. Her last shunt valve worked for a few days before it clogged up.
Her surgery will be some time late morning. I know their are a lot of people wondering what they can do. Just keep her in your prayers, Sarah has all the other kids and I am not leaving here without Avri, so that does not leave much else. I have to thank everyone for the meals and treats over the last week it takes a load off for sure, and has been greatly appreciated. Hopefully this will go great and we will be home tomorrow afternoon.

The Grand Plan!

Avri did end up getting another ct scan and x-rays. One of her ventricals in her brain is bigger. The nero team decided to turn her presure down this time. Turning it down will make her dump all her cs fluid if her shunt is working properly. If it is not working properly her ventrical will still look big in the morning. If her ventrical is still big then she will go in for surgery just on that one side. So she has to lay flat all night...She is going to be happy when they put that bed pan under her! They also beleive that she has been getting plugged and then unplugging on her own for the last 6 years and that the spot where the shunt is sitting in her brain is no longer a good spot. They are doing some special high resolution ct scan in the morning so if they do end up doing surgery they can take the scan in the O.R. with them and it will act as a GPS to place the shunt in a diffrent spot.
In the morning if her ventrical have actually gone down then they are going to turn that side back up and turn the other side down and wait a day and see what that side does. So in the grand plan ...We are stuck up here for at least 2 more days either for brain studies or surgery or both.
If neither of these studies tell us anything then we are in for a world of hurt I am afraid. There is a migrain condition the doctor mentioned but he does not even want to go there until we know. So as bad as the first plan may sound we are crossing our fingers we don't go to senario 3.
Avri is doing better than she was when we got here. Her heart rate remains a concern but her headache has subsided on its own. (or transfered to my head?) On a funny note. The nurse came in and asked if we knew Avri's exact height. I said "no" I think I do but I don't trust what I think right now. Anyways....Avri said "well do you know how tall Mr Lindberg is??? Because I am taller than him" I may be the only one who finds that funny because I know her teacher and I am also tired.

Enough Is Enough!

We gave it our best. The nero surgeons wanted us to wait until tomorrow but Avri's head is saying otherwise. Avri began throwing up at about 4pm and was crying because her head hurt so bad. She threw up again around 5pm. I can't just hang out all night and watch her twist in pain. I decided to call the hospital and get the resident on call on the phone and ask him if they wanted us to wait until tomorrow he needed to call her in a few loratabs to get her through the night. This is not a resident that saw us at all this weekend, but he knew the whole entire case. He asked me why I did not just bring her to the ER. I explained to him that the two nero surgeons made me feel like an idiot and said give it time. They said I was not giving her time to adjust to the pressure changes in her head. He seemed very concerned and had a tone to his voice of great frustration. (he gave me the impression that he did not think she should have been sent home in the first place)
He said I should just get her up here.

So I took a quick shower (as I had been watching her all day and had not had a chance) I packed a couple days worth of stuff for me and Avri. Then I Sent all my other kids over to there other mother : ) I am fast it takes me under 30 minutes to get to the point of leaving the house. In this small time frame Avri has rapidly gone down hill. I help steady her to get her to the car. I walk her out the door and she just stands there. I Say "come on Avri" She half yells like a drunk lady " I can't see" as she takes a step and totally misses the first stair on the steps. At that point Matt comes over and helps get her down the stairs and into the car. She immediately goes into a deep sleep.
we arrive to a full waiting room and hospital. Avri is in serious enough condition that she is taken back to the trauma room but instead of them sending her back out to wait her turn they took her straight back to a room. Her blood pressure was low and her pulse was 54.
Doctors have come in and she is obviously not in good shape. They at this moment are thinking she is just going in for surgery for double shunt revisions. They would like to avoid any more radiation with scans and just fix an obvious problem.
We have not talked to the all knowings yet, so they could have a completely different vision for her.

Avris first 8 years.

I wanted To put a movie on here of all of Avri's triumps but they don't seem like triumps with out seeing the struggles first.

Wednesdays Update!

We started off with a really good day. Avri got up and wanted to eat and talk with everyone. She was complaining because she wanted to go to school or some where. She ate breakfast had a bath. She made a few phone calls, sent out some text messages. She was watching TV and all the sudden popped up started her huffing and puffing and said she needed to go some where quiet because she had a headache. All I can say is I better get some answers tomorrow!

Why take time to read this blog?

I have to explain something as I have seen how many people have read this blog. I realized people that really don't know me or my family are reading this blog. I had a conversation with some one around the time that I started this blog about a child that was not doing well. The doctors were offering no hope to this child in any way. The picture painted for the life of the child was very discouraging. It angers and confuses me at these types of things because I have personally witnessed Avri's life in which according to doctors was not meant to be. For any one who did not read from the beginning. I was told to let Avri die. She had no hope for any future. She had to much damage to live to be more than a vegetable. I was also 19 just graduated high school and single. This was going to ruin my life (according to doctors).
I am not writing this blog for any sympathy, I do not need it! I am not writing for money or attention, I do not need that either! I am writing this because if there is one person out there that is discouraged because of some lack of hope given to them for any reason and I can offer insight that things can be different then it gives all the pain and suffering Avri has to go through in order to survive a purpose. It does not seem fair to take an innocent baby and give them some affliction that they will go through for the rest of their life just to help others. The concept of this my seem twisted to some of you readers, but I have to find purpose in this so I can live and not be bitter. Avri does not complain, she dose not ask why, she has never talked a mean word to anyone in her life. She is an example of pure love a true Christ like attribute. She also does not have the ability to express herself to others or to make her purpose heard. I feel like as her mother and greatest voice it is my calling to not only take care of her and protect her but to reach out and give all her suffering a purpose.
Avri has done so good for the last almost 6 years. Our family was helping out with foster care and ended up adopting 2 boys. Avri's issues stopped the minute our first boy came into our life. He was a handful and he still struggles. We got our second boy just a few months after our first. This whole process with our boy's was an emotional struggle for all of us. I honestly do not know if I could have gone through with the whole process if I had to care for Avri at the same time. These boys would not have gotten the care and attention they deserved either. We have had time to make some roots with them and create the bond we all needed. I can say though going through this all again after such a long period of time "I do not miss the illness, but I have missed the quality of thought" I get so busy with just life and I get in my routine though it includes prayer and spiritual growth it is nothing like the faith and thought put into a suffering child of your own.
I was talking to my dad last night on the phone and he said "you will be so blessed one day for all this" I told him "we are already so blessed" Don't get me wrong times like this are so hard and believe me I have said this is so unfair and I have been angry, but I can also honestly say unless you have gone through what we have you will never in a life time get to feel the true love of Christ as I have, and have an honest to goodness understanding of the sacrifice of the only begotten son of God. It kills me to sit back and watch Avri suffer the way she has and is does not compare to Christs suffering the difference is I am helpless, God was not. The love for all man kind he must have had to not reach out and strike the people who tortured his son is not even comprehensible to me. It is easy to forget all these things. I feel honored to have such a special spirit in my care. I would not be me without her.
My point is...don't find sadness in her story. Let this give you strength to be better. Reach for the higher goals in life and know they are possible. Don't read my posts and think of what you can do for Avri or my family (we appreciate the prayers) but think of what you can do to improve your own life through her example. If you can improve yourself in anyway because of her story you have added more purpose to her life's trails and make what she is suffering through all worth it.
Anyone who does know Avri also knows her life is not always pain and suffering. She has more good days than bad. Her life is very full. I intend to keep up with this blog and post her triumphs as well. I wanted to start out from the beginning so the days that I post "my 14 year old daughter just advanced to the second grade reading level" you will understand why this is a huge accomplishment for her.

24 hours at home!

We got home yesterday around 3pm. Avri was glad to come home. For Matt and I it is scary, but it is always nice to be in the comfort of your own home. Avri has been a little more chipper and whiling to talk to people. She had a couple of her teacher aides stop in and see her. (I like to think of them as her second family) she is with them more than she is me. She loves them both so much. She was glad to see them, but after the second visit she crashed. She wanted quiet again. She gets to breathing hard and huffing and puffing enough that I can hear her from the TV room. Her head ache is back. It is no where near as bad but there to say the least. She either had a restful night or I slept way harder than usual. First thing waking I had to give her more ibuprofen for her headache again. She continues to just want to sleep. One of my best friends and neighbors insisted on bring over lunch and brought Avri upon request an oreo shake. Avri perked up enough to say hi and to take a bite of the shake but the minute she left Avri fell right back to sleep. I am very concerned about the situation but I am going to follow doctors orders and keep her here comfortable and flat until Thursday if I can. If she is not better by Thursday the boxing gloves are coming out.

We are going home!

We have been released. I asked if I could get a straight answer from some one before we left on what was going on because the fact that she was great for the week following her surgery then went down hill makes no sense to me. The nero team said her pressures were just not being tolerated but they were tolerated for a week just fine. I asked this question several times and never got an answer. My question was redirected and avoided. So nero called me on the phone as per the pediatric doctors because I am not confident about taking her home. I finally got a straight answer. No one knows what is going on. Nero surgery is very confused, they are not confident in any part of this case either. She said that they want her to lay flat for 3 days and then come back on Thursday and they will scan her and go from there unless she dips again. They just don't want to open her up if she is coming back out of whatever stoop she was in.
I told them I would rather them tell me they are confused with me rather than avoiding me and trying to act like they know what is going on because I don't buy the act. Dont get me wrong, i would much rather be in the comfort of my own home than here any day!

Things are looking up on the outside!

Nero surgery came around and decided it was best to hold off on surgery. Avri is being persistent that she dose not have a head ache any more. She is still extremely tired. We are being pulled a couple different directions here. I had some one say sit her up ... another say no lay her down (keep her flat) One comes in and says lets get you showered and get you out of here. I am saying all she has had since yesterday morning is 4 ounces of sprite. Can we at least put something in her and see if it stays before we kick her out the door. She just barely finished a light lunch. She was able to sit up and finish everything but wanted to lay right back down. She is more alert and talking to people more. She is responsive. Her heart rate is up and more stable. She has more color to her face. We technically are not on nero surgery's service, we are on pediatrics service...so we are now waiting to see what they have to say about everything. The scariest thing to me is that no one that is talking to me about Avri's care and the plan is confident in what they are deciding.
I can't help but think of the smile on the residents face on morning rounds. I am wondering if he thinks the round of laxatives, suppository, and enema was the answer. If he only knew the night nurses refused to do it and just left it alone. They were all talking about how when these guys don't have the answer they order an enema. I find it unsettling that these nurses don't respect the nero surgeons enough to defend the decisions they are making about my child's care. I have heard be persistent and so much uncertainty this visit than ever before. In my mind the nurses should be saying "these guys know what they are doing trust in their plan"

3-21-2011 ???

We are all spinning in circles again. Avri woke up feeling fine today. Right before midnight the nurse gave her 2 loratabs because she was going npo and she wanted her to be comfortable up until the surgery. She also gave her more zophran. So at the moment we have all the doctors standing around scratching their heads.
I don't know if I should just have faith and know all the prayers were heard or if I should lean more towards Avri is lying because she does not want to go back into surgery. As quick as she says she is fine with a small smile on her face, she falls back to sleep. As for the plan for today...It sounds like they are going to watch her and see what happens.

Living in the mind of a Nero surgeon.

I don't think I will ever truly know how these guys work. Avri has not shown any sign of getting better since we arrived here at the hospital. In fact she has gotten much worse. She has not ate since we got here and she has to be asked to just take a sip of her drink. She threw up around eleven and I made a comment that more was coming out than what she was drinking and no one said anything. Ok not a big deal. Just weird.
On top of all other worries. When Avri stands up to go to the bathroom she becomes extremely dizzy. She is already pale but any color at all she may have had leaves. She starts breathing really hard and it becomes a race to get her back in bed. So tonight when we get her back in bed her heart rate drops to 50. Now I am no doctor but this really alarmed the nurses and they called nero surgery. They are thinking we need to get her down to surgery and get her fixed. well nero surgery calls back and says as long as it goes back up when she moves just keep watching it and moving her. GREAT! I could tell the nurse was worried and that was not what she wanted to hear. These nurses are really worried which in turn worries me. Some times I just sit here and watch her monitors and her heart rate normally sits around 80 to 105. It is not steady by any means but 50 seems low. I guess 45 means they are (some big heart word I can't say let alone spell) it just sounds bad.
So then she throws up again. I say to the nurse that sure seems like alot more than she taking in. I asked if she was absorbing her IV fluids into her stomach then throwing some of that up to. Turns out she more than doubled her intake in her vomit. In looking back same thing from earlier. The nurses find this strange enough that it is all noted.
So the nero resident comes around (he is over seen by the attending so everything has to be approved through the attending) he looks over the recent events. Her vomiting and her heart rate. He wants to wait until morning to do anything as far as surgery goes. I am fine with that, I would like to give Avri just as much chance to recover on her own than to have to endure another surgery.
You will never guess what he orders...yep, lets give her a laxative drink and if that does nothing for her in 30 minutes lets give her a suppository. Ok Really ... well they say constipation can cause the same symptoms of shunt failure. I don't know why I have never read this or heard this but yet again I am not the doctor. So far no results and so he is thinking lets give her an enema and see if that clears her up. Now I am not sure how this doctor went from shunt malfunction to ruling out a very life treating case of constipation, but there you have it ...a glance into the mind of these brilliant doctors!