Day 24. Year 5.

I'm in a groove right now. Might as well continue sharing. If I keep talking from the heart, maybe it will help clear my mind. I watched Vicki on the monitor most of the night and have the monitor sitting beside me as I type this right now. Usually when Vicki goes to sleep at night she's pretty quiet. I guess I never really know how much she sleeps, because I usually don't watch her and listen to her on the monitor all night. But I've been so worried that I can't look away. And I don't know if it's just recent, but, wow, she sleeps even less than I do. She was actually up really late last night. She yelled for a while. Then she's quiet. Then she yelled, 'I'm so sorry.' Then quiet. Then, the cutest thing... she started reciting ingredients. For hours I hear her. 'Salt, butter, yeast, vanilla, flour, broccoli and cheese.....' That was actually very soothing to me and it made me smile. Gosh what I would give to hear what runs through Vicki's mind as she goes to sleep. This is the closest I've come to hearing that. And it was quite the blessing.


Just in case you were wondering.... yes, she had more SIB (self injurious behavior) yesterday (Monday). That's 3 scary days in a row. I will talk about being homebound in a second, but let me tell you this.... not only has it been a difficult summer for Vicki, but it's been very, very hard for Ally as well. You know what. I need to talk about Ally. I'll write about being homebound another sleepless night. Pretty sure I won't be sleeping much again. Hey, maybe I will actually make it to '30 days' this year.


OK. Back to the difficult summer for Ally. Most summers I try really hard to get Ally out. I put her in camps. Field day fun camp. 'Internships' at the Wacky Bear Factory where she learns how to wait on customers and work the cash register machine (which, by the way, if you know Ally, you know she loves counting money). She does swimming lessons. I try to give her experiences she may not usually get. Why do I keep her in camps? Because if I didn't, what kind of summer would she have? Autism has made me antisocial. At first not by choice, but by necessity. Now I feel more comfortable interacting with people on the computer in the middle of the night instead of over coffee or a girls night out. The logistics to actually do something, plan something. It hinges on so much and instead of trying to plan something and be disappointed, I just don't try anymore. I don't want that to happen to Ally. But I see it starting and it makes me so sad. Sorry, I'm all over the place.


Guess what kind of camps Ally is doing this summer? Nothing. Nothing at all. I used to be able to take Vicki with me when I would drop Ally off at camps. Now, Vicki has always had trouble with transitions... so I would have to make alternate arrangements to sign Ally in sometimes because I couldn't get Vic out of the car, or get her to walk into the place with us. But at least I could drop Ally off and pick her up. I can't do that this year. And it's not like I can give Ally what I perceive as a 'kids' summer vacation'. No trips to the pool this year.(Except for the one time 2 weeks ago a dear friend took Ally and Joe with her family to the pool. It was the kids' only trip to the pool this summer.) No bike rides. No playgrounds. No trips to the library.  And so often, no friends over. It's so hard sometimes. Especially now. Ally doesn't want her friends to be afraid of Vicki's behaviors. What Ally has to see on a daily basis, she doesn't want that for her friends.   It's just not fair to Ally. But you won't hear Ally complain. (Well, yes you will.... but not necessarily about that!)


Gosh, where was I. Sometimes it's hard to see the flow of my thoughts, but I do have a point. Somewhere. ;) Hey, I made a winky face. That's progress. Back to my point. The one thing that Ally continues to do is go to guitar lessons. She will absolutely be the next Taylor Swift. Ally and her white cowgirl boots and guitar and song book. I had the perfect schedule. Ally took guitar lessons and Vicki took adaptive piano lessons. Both at the same time! Both at the same place! You know when you schedule kids activities, that's quite the coup! I was quite proud of myself. It works all school year. But not this summer. Because Vicki can't transition at all into the van. Not even to go to her piano lesson. We keep trying. So many different behavioral techniques. But nothing. And if I don't have an aide working, then Ally doesn't go to guitar either. As a mom, I have so many conflicted feelings. I feel such sorrow and pain for Vicki. And I feel such anger for Ally. It's just not fair. 'Ally get your guitar let's get in the car.' Oh. Never mind Ally, just go practice up in your room. I can't get Vic in the car. We'll try again next week.


I do have behavioral specialists that work with Vic everyday from 4-7 in house. But because of regulations, someone over 18 also has to be in the house. If I don't have an aide for Vic, which I haven't quite often this summer, then it's me. But yesterday, I had the behavioral specialist and an aide. Yippi!  I can take Ally to guitar lessons. I had already discussed with both of the professionals what has been going on with Vic. And the last 2 days her SIB didn't manifest until abut 7:30-8. They were comfortable with me leaving for a half and hour with Ally. I had plans to even stop at the pet store for a second and maybe get a new fish or crab for our fish tank. Just something to cheer Ally and myself up. So Ally and I leave. Woo hoo. We are out. I don't care that it's almost 100 degrees. We are out in the sun and going somewhere together. But, yep, you guessed it...


Not 5 minutes into our trip and I get a call on my cell. Not only does Ally see everything, but she also hears everything. And her mind keeps going. She knew when I got a call that something was going on with Vic. 'Do we need to turn around Mommy and go home now?' 'I understand. It's ok.' Well, I was almost at guitar, so we worked it out that I dropped Ally off and ran home, then Vic's aide drove over to pick Ally up after her lesson. I know it sounds horrible. I am heartbroken over Vic. And at the same time I am angry for Ally. It seems silly, huh? We couldn't even spend 1/2 an hour together and then stop at the pet store as a treat. I just want to stomp my feet and say, 'it's not fair.' But, at least Ally got her guitar lesson in this week. I have so much more to say about Ally. And I have so many less depressing things to share. It's not all bad. It really isn't. It just seems that way sometime. And I just focus on that too much. But I need to wrap this up. I have a bunch of things to do this am... doctors to call/write emails to... laundry to do... blah, blah, blah.


But I will leave you with why I turned around and came straight home yesterday. Yes, Vicki had some SIB right after I left the house. She was working upstairs in her room with her behavioral specialist. Doing 'work' is one of the only things that Vicki enjoys right now. She is the hardest worker I have ever seen. She loves learning. She is amazing. Anyway, they were doing some discrete trials. And then all of a sudden Vic stopped. She said, 'stop please. wait a minute.' (That's been one of her stem phrases lately). But as soon as she said that she started screaming. It must have been that awful scream I described yesterday. Because right after that Vic started hitting herself in the head with her hand. And when the therapist went to block her, Vic pushed her really hard. And then Vic stood up and started throwing things off of a shelf in her room. I had just, within the last year, started putting 'knick-knacks' and stuff in her room to try to make it more of a 'typical'  teenage girl's room. Not so sterile. And she grabbed one of her birthday presents from this year off the shelf, an adorable little ceramic trinket box that said, 'There's no place like home' on it with a pair of red shoes (Vic's favorite color is red) from a very special friend. And Vic threw it across her floor. It shattered. And yes, that made me cry. Vic settled down just as quickly as it started and it was back to work for her. And just for completeness sake, sometimes I look back on these posts so I can remember... it's kind of a medical journal for me.... Vicki did have more SIB at around 8 pm again last night. It wasn't as severe. But it was there. And I am so afraid for her. Please continue to pray for Vicki. And if you could throw one in there for little  Miss Ally, I would appreciate that as well. I will try to do a happy post tonight. I really will. And then I'll get back to our summer of sadness. Sheesh. What a downer I am. I'm sorry. This truly helps me though. Writing about everything. Thank you all for being my personal therapists. Thank you for being here for me. I am blessed. xo

Day 23. Year 5.

So here it goes. One of the most emotional, raw posts I have ever made. Things are going on with Vicki that I can't even begin to describe in depth. And I'm not sure why I am even trying. I just need to. For me. So please bear with me as I bare my soul.


You know, it's one of those things.... each person's situation is so different, and so unique. Each person's struggles are their own. It doesn't matter how big or small, how silly or insignificant, or how traumatic and life changing you may think a struggle is. It's real for that person. I'm not quite sure why I'm babbling about this. I think it's because I don't want to sound like I am taking for granted how blessed I truly am. And I don't want to make my struggles sound like they trump your struggles. Because they don't. They are just different. With that being said... here's my description of Vicki's SIB (self-injurious behavior).


It started back on June 2. It lasted about an hour. It was awful. Awful isn't a strong enough word. It was like it came out of the blue. My husband and I didn't even register what was happening for a second.


You know how, as a parent, you can distinguish different cries from your baby. Different screams. Different sounds. You know exactly what they want/need when you hear that specific sound. It's the same with Vicki. She has a lot of different screams and cries. She has been screaming a lot more in the last few months. Most of the time it's in response to something I ask her to do/not do. But this scream... this scream is so different. It chills me to the bone. It scares me. It's multidimensional.  I wish I could describe it better. Yes, it's loud. But it's more than that. It's like it's coupled with such an intense fear. And I can see it in her eyes. It's wild. It's primal. It's got fear and anger and sadness and confusion and rage all in one sound.


Ok. So, I've established that she is screaming through this ordeal. 


She was in the living room the first time it happened, sitting on our toy box footstool and the kids and my husband were in there watching tv with her and I was cleaning up the kitchen from dinner. Vicki started screaming and reached  up and hit herself in the head with her hand. It was so quick that it didn't even register at first. I think Joe said something to her, asking her what was wrong. Then she hit herself again with an increased force and both Joe and my husband lunged toward her. It kept going. Vicki is so strong. My husband kept talking to her trying to soothe her. And he was holding her arms down so she couldn't hit herself. Vicki's arms and legs were flailing so violently and she was screaming and shaking her head back and forth.  I grabbed Ally from the living room and Joe took her up to his room. I stayed with them for a few seconds to make sure they were ok, for the moment. I was shaken up. Joe and Ally were shaken up. Ally and I were crying a little bit. Joe was so worried. What's wrong with Vicki? Is she going to be ok? All I could do was reassure them that Daddy was taking care of her and we would help her through it. Thank God for Joe. He kept Ally in his room for about an hour. Just playing with her and keeping her mind off of the noise and the chaos downstairs.


Now my husband is a very strong guy. Former football player, former wrestler. He knows how to move and how to pin someone down.  And he called upon all of his knowledge and strength to get Vicki through that hour. There was nothing really that I could do, except pray and check on Joe and Ally from time to time. I felt so useless. And when I would look into my husband's eyes, I saw such pain and anguish. Not something I ever wanted to see reflect in my husband's blue eyes.


Now to try to describe this SIB better. I know I don't have to. But for some reason, I need to. I'm not really sure what writing it down accomplishes. My husband was able to move Vicki from the footstool to the floor and I moved everything away from her. She kept up that heartbreaking scream. It was so guttural. And she was mad. Or I don't really know what she was. But I know that she wanted her hands free to continue hitting herself. It was like she had this need. And when she couldn't move her arms to hit herself, she tried her legs, she tried to knee herself in her head. She tried to kick. She would lunge her head toward her arms and try to bite herself. Yeah, that's about it. This vicious cycle happened for at least an hour. And every time my husband tried to loosen his grip, she kept trying to hit/bite herself. He was basically straddling her trying to keep her safe and keep her from harming herself.


It was so terrifying. We kept talking to her to try to soothe her. And when we thought she was finally settling down she would ramp up again. Giving her the freedom to move her limbs was so hard. When she was finally able to stand up, it was so hard. When we took her to bed, it was so hard. And a few times throughout that process she ramped up again. It happened again in her bedroom right before bed. She hit her own head so hard with her hand. Every once in a while she would connect. And that was that. We watched her on her monitor all night long. We comforted Joe and Ally. I cried. And the next day, you would never know it happened. I kept waiting, watching, praying.


Now, we've contacted all of our doctors about this terrifying behavior. I wish someone had some answers. Do I think it could be medicine related? Yes, absolutely I do. We are looking into everything we can think of. You want to know what is horrible? I don't like medication. Never have. Don't like to use it. It's been hard for me to try pharmaceutical management for Vicki. How do you know what helps? What makes things worse? If this is a side effect of an anxiety medication, it makes me feel horrible. What if trying to help her with one thing has made something else wrong? What does Vic feel? Oh God, what I would give to know.


Fast forward to Saturday night, July 18. We were sitting down at dinner. Vic started crying a bit. Off and on. That's not unusual. It's heartbreaking, but not unusual. But then we started hearing those screams. It was the same scream. We just knew. And my husband jumped into action. Joe grabbed Ally and went to another room. I tried to make the area safe around Vicki. It was the same, except more awful. This can not be the new norm. The initial episode didn't seem to last as long. It was like she stopped herself. We gave her more room to move. She got up and took her plate to the kitchen. And then in one quick motion she leaned forward and bit herself in the palm of her hand. My husband grabbed her and tried to pin her arms down, She was thrashing her head around. Screaming. Trying to get her mouth to connect with her skin. Anyway she could. She kept moving her head and her little Pocahontas braids were flapping back and forth, she would latch onto one of those and try to bite her hair because that's all she could get a hold of. She calmed down and sat in the chair in the living room. She kept looking at her hand (thank goodness she didn't break the skin, but there was a bite mark there). She asked for cream and a Band-Aid and then for the doctor. Her hand hurt. We put on a cooking show to try to get her to stop thinking about it all. My husband sat right next to her. She kept picking at the band aid then would try to make marks on her forearms. And although she wasn't thrashing around so violently, she kept trying to bite herself or hit herself. And it got even scarier when she went up to get ready for bed. I was so afraid to let Vicki sit on the toilet because she was still so unpredictable. The fear that this kind of behavior instilled in me. I can't describe it. My reflexes are not super fast. What if I don't reach out in time. What if I can't block her? Yet again, it was another sleepless night watching the monitor.


I was hopeful that it was again a one night episode. But, same time, same place. At the kitchen table. This time right before dinner last night. That scream. Her body. Her eyes. It's not Vicki at all. How the hell do I help her? This time she had her fork and a butter knife in hand. Thankfully we got it off of her, and the only causalities were the butter container being thrown across the kitchen and a glass of water thrown and spilled. I will take that. As long as Vicki is safe. This time Joe wasn't home. He went to Boy Scout camp for the week. So Ally was on her own. I grabbed her plate of spaghetti and meatballs and ran her into her crafting room. I ran back out to help my husband get everything safe for Vicki, and then went back in with Ally. She was crying silently, her little shoulders hunched over, shaking. No one should have to see this. No one. No one should have to experience this. Not Vicki. Not my husband. Not me. And not a 10 year old child. Ally and I sat and talked at she ate by candlelight. We watched you tube videos on how to make some Barbie food. We snuggled. And we cried.


So that's where we are. I have been watching the monitor all night for Vicki. She's all snuggled up in her blankets holding Layse black cat, sleeping I think. I've been watching her sleep on the monitor as I type this this morning. I have more phone calls to make to the doctors, more questions that no one seems to have answers to. And so much fear and sadness. Please continue to keep Vicki in your prayers. Please let this SIB be over. I will be waiting and watching and holding my breath all day.


I think this may be a first. I didn't crack a joke at all. I can't smile. I can't laugh. This was really hard for me to write. This stuff is horrible. A living nightmare. I can't imagine what others go through who have severe SIB all of the time. Thank you so much for listening and for reading and for being there to comfort me. It means the world to me. I will draw on your strength and your prayers in the days and weeks that follow. xoxo

Day 22. Year 5.

I pulled up my blog today because I just had this need to write. I've kind of completely disappeared from life the last few months. Sorry. I feel like I've been doing that more and more lately. That's not a good sign for me. You know writing has always been therapy to me. But lately, it's like I can't bear to write what's in my heart. Because it feels so painful for me. You know I try to be an upbeat and positive person. I love to laugh. But lately it's been hard. I've had all of these feelings that I don't like having. I don't know what I feel anymore sometimes.  I don't want to be told how strong or amazing I am. Because frankly, I'm not. We all just try to do the best we can with the shit life throws at us.I want to apologize... I always try to write with humor infused so it doesn't get too heavy. But, life the last few months has been pretty heavy. I don't want to bring you down. So here's your warning. I've been sad. Read on if you don't mind. ;)


 I don't like feeling sorry for myself or jealous of other people. But I have been. That's why I kind of disentangled myself from all things social media. I've always loved seeing happy posts and seeing all of the fun people are having. It makes me feel connected to life, to people.  But over the past few months I just turn green with envy. It's horrible. I know that I don't know all of the silent battles that everyone faces. I know that the persona that most people show on facebook isn't their life 24/7. I know that when I post a picture it only shows you a snapshot. If you looked at the pictures that are on my camera right now, you would say... I don't know what she is complaining about. I don't know why she is sad. She has a beautiful family. 3 amazing kiddos and a really hot husband. ;) She is lucky and blessed beyond measure. And I am.  I know that. I really do. And I AM thankful. I really am. See, that's why I need to write sometimes. To remind myself of this. Because I get so caught up in the negatives and in the sadness and in the, 'oh, how I wish...' That's a dangerous place to go. Damn you autism.


It's not even that I covet things. I covet actions. I covet moments. I see big family get-togethers. I see trips to the pool. I see kids climbing on the monkey bars. It's summer. That's what summer is. Getting outside and enjoying the beauty. I covet what I perceive as 'easy enjoyment'. Look at those sticky sweaty tanned face kids with popsicle juice running down their mouths all crammed together sitting on the back porch steps. I wonder if their moms are appreciating that moment? I'm sure they are. Gosh I wish.... I wish...I wish that was something easy and spontaneous that we could do. The hell that Vicki is living right now. I can't even imagine. I wish everyday I could see inside that head of hers, inside her heart. I will write about it. I really will. Soon.


So I see how this post is going. Baby steps for me. This is not what I planned on writing. But maybe I just had to start with this. My frame of mind. My reference. Maybe I can't talk today yet about what's been going on with Vicki. I reread the last post I wrote. So much has happened since then. I wish I could say it was positive. But of course, if it was, I wouldn't be having so much trouble writing. Sheesh. What a post. Sorry. I will try to pick up where I left off next post. I'm just all over the place this morning.


It rained last night. My backyard is so muddy this morning. Seems fitting for my post today. Mud and dirt. That's what our backyard is. I can see the green grass in the yard next to us. Why? Why can't our family have green grass?  We keep trying. Maybe someday.... I hate saying.... it's too muddy in the backyard, wait til it dries out a bit. It never really does. You know?


I need to embrace the mud and the dirt. It exposes all of the roots in our yard. Yes, we keep tripping on those roots. But they are there for a reason.


Thank you for reading. Thank you for being there. Thank you for all of your love and concern and messages. Each one means the world to me. xoxo

Day 21. Year 5.

Thanks for the good thoughts and prayers... getting Vicki to transition from our van into her school yesterday didn't go the absolute worst it could have gone, but it didn't go well at all. Would you like to hear today's comedy installment? ;) Seriously, if I didn't laugh at myself and absurd situations, I would be in a very dark place. 

 We got to Vicki's school on time. (whoop whoop!!) She wouldn't get out of the van. (Usually what we do is that Ally gets out of the van and hangs out with me as we are getting Vicki's coat and backpack ready for her. That's what we did again. Cool. Calm. Collected. My secret deodorant was working over time. ;) Don't let Vicki see you sweat! 

Anyway, I tried my usual go-to's for a while... with no success. And Vicki, being as smart as she is, stated,'Ally. Van. Close door. Ally school.' Yep. Because that's what I ended up doing on Monday. But, demonic laughter, {muah, ha ha} that's not what was going to happen on this day. So we wait. And wait. And then. Yep. You guessed it. Stink bug attack. Ally starts screaming at the top of her lungs because a stink bug landed on her shoe. 

What? You didn't guess that? ;) 

Now, I'm no fan of stink bugs... and I had open toed shoes on.... BUT, me being the brave mommy that I am, I did gently kick the stink bug off of Ally's shoe into the middle of the parking lot. Very calmly. Again, thank you secret deodorant..

Now. Back to our regularly scheduled Vicki. 

She still wouldn't get out of the van. So I called into the school and we arranged for her autism teacher to come out and try some things. You know what.... I really can't talk seriously about this incident right now. I need to smile and I need to laugh. So, I am not going to go through what we actually went through.  I will save that for another day. That's hard for me. 

OK. So, on top of everything else, my 'contingency' plan was pretty non-existent. Some options that I usually have were not available, One thing I completely forgot was that our drywall guy was coming over. Early. And I didn't think to figure out a way to let him into our house. I had no idea how long this would go on. It could potentially last hours. And I didn't want our poor drywall guy sitting outside of our house. So, I texted him the school's address (it's only about a mile or so from our house) and he had no problem meeting me so I could give him our garage door opener. But of course, as soon as I made that arrangement, Vicki decided it was time to go into school. Of course. 

Now, I never underestimate Vicki. I feel like she has a sense about things that I have no idea how she does it. For example, the other day when I picked her up after school, she said 'Mom gas. Red van.' Either she knew I was having stomach issues (ha!)  or she knew that my low gas warning literally just clicked on right before I picked her up. How in the heck did she know that? Does she pay attention that closely that she knew I would need gas in the van? Interesting.... Anyway, did she know that I rearranged things at that moment so she decided to comply? I'm sure it was just a coincidence, but gosh it's crazy. When Vicki decides it's time to do something, it is. And it becomes like nothing happened at all. 

So... about 50 minutes after we arrived at Vicki's school, she walked in. And I had to hurry and make sure I didn't miss my drywall guy pulling up in the parking lot. We walked Vicki in and then Ally and I scoured the parking lot for his truck. We waited. And waited. And finally saw his truck pull in at the bus parking lot... then disappear. I am waving my hands in the air like an idiot running around the parking lot with my garage door opener. He sees me and then goes back to the main road and pulls in the right parking lot. We roll our windows down and make the garage door exchange. Phew. 

And then I take Ally to school and she got to her school 45 minutes late. I wrote a note to her school counselor to let her know what's been going on with Vicki. Occasionally Ally will have lunch with her and talk through some things. I never underestimate how much incidences like this affect my kids. All of them. It's not easy at all. It's so hard that I couldn't even write about it this morning. And in a little over 2 hours we will be doing this all over again. Hopefully without the stink bug or the garage door opener incident. And hopefully with Vicki getting out of the van easier than she did yesterday and the day before. I tried to make this lighthearted, I need to smile again, and thank goodness I am finally starting to feel better from my stomach bug. But, in all honesty, these situations are heartbreaking and so very difficult for everyone involved. If you could continue to pray for strength for all of us and send good vibes to Vicki so that whatever internal hurdle she is facing, that she can win. xoxo

Day 20. Year 5.

This one is going to be fairly quick.... but I really wanted to say thank you first. Thank you all so much for reading and caring and loving and reaching out to me. It means the world to me. One of the hardest things, I think, for a person to do, is to admit when they need help and when they are just defeated. No one can do it all alone. And I am humbled by the outpouring of love and encouragement that I have received. I plan to do a happy blog sometime soon... but today isn't quite the day for it.

Sometimes I feel like my life could be one of those slapstick comedies. Yesterday was one of those days. I would be laughing myself if I were watching it on TV and it wasn't playing out in my life. But I am cracking a smile right now as I go to type, so that's progress. ;)

So.... Ally FINALLY got over her stomach virus. Thank goodness!! It was horrible. It lasted from Sunday through Friday night for her of last week. How do I know how horrible it was? Yep. :( Because, of course, I got sick Thursday evening and am currently on day 6 of it. I am hopeful that I will be over it soon. It's been very difficult. So... comes the slapstick comedy:

Picture this:

Ally is excited to go back to school after being off for spring break and then the entire week of her birthday because she was sick. She had gotten her ears pierced for her birthday and was super excited to see her friends again. Joe, thankfully, although he still had a cough, went off to school without incident. Daddy was home because we had a meeting to attend for Vicki's BIP and ESY (behavioral intervention plan and extended school year) at school. He was waiting at home for a drywall repair man to come and fix our ceiling from our skylight leak. Mommy, who at this time was working on day 5 of her stomach virus, was really not feeling up for much of anything but got the girls ready for school.

Everything was going as smoothly as it could until we got to school for Vicki. Remember the other day, when I told you how difficult each and every transition is for Vicki? Well yesterday it was a difficult transition from the red van into her school. It was so difficult that after 15 minutes of trying to get her to get out of the van and walk into school, I had to just leave and take her with me. That has not happened this year at all. I've always been able to get her out of the van, give or take 10 minutes. Well, Ally had missed a week of school and I really didn't want her to be late. So, I kept Vicki in the van and we dropped Ally off at school in the car rider line (so Vicki just had to sit it the van). Ally got to school on time. Check. Phew. Now what to do with Vicki?

I called my husband, and because he just so happened to be home for our meeting which started at 10, I asked for his advice. Because no matter what happens, I already kind of shot myself in the foot by leaving Vicki's school without her getting out of the van. I knew he could get her out of the van, but didn't want to do that. Because he's not available every morning, and I didn't want to start something.... And it only takes one time for Vicki. Only once, and it becomes her new norm. So I went back to Vicki's school. I called the school and told them what was going on. I sat and waiting. I have a lot of strategies I try to use to get her to move, I can describe them some other time. But nothing. She just sat. And after waiting there for another 30 minutes, remember.... I still have a stomach virus.... yep. I had to go to the bathroom. Like, now. So, again, didn't want to do it, but had to.... I got back in the van and went home so I could use the bathroom. Sigh.

And the end of our story... by this time the drywall guy had come and Daddy was ready to go to the meeting. I used the bathroom. So, we just went over to the school altogether. After a few minutes, Daddy got her out. I admitted defeat. Now, I am not able to get her out the way he does, or I would have.... No one else can. Anyway.... we made it on time for our meeting. Vicki walked into school. I sat in the meeting for 2 and a half hours praying I wouldn't have to go to the bathroom. And there you have it. Come on, it's so sad, that it's kind of funny.... ;)

I have to go right now and get Vicki ready for school this morning. The reason I wanted to write this is because if you get a chance to read this now, can you say a little prayer for Vicki and for me? Give us a little more strength.... I am not sure what that transition will look like this morning and I am scared. Thank you all so much for giving me somewhere to talk about things. I love you. xoxo

Day 15. Year 5.

I'm sorry I haven't been keeping up with posting. If you want to know the truth, I am overwhelmed. By everything right now. :(

This may be a bit of a scattered post. But it's 4:30 in the morning and I've been up most of the night...
it's actually because of my youngest, Ally.... She's been sick since Sunday night... hence, why I haven't been posting. This is going on day 5 for her of the worst stomach bug ever. I feel so bad for my sweet girl. And it was Ally's birthday on Tuesday, double digits. I hate seeing my kids sick, but it's really sad when they are sick on their birthdays....

I just want to cry. And yell. Please give our little family a break. It's been such a rough year. And a really rough spring break last week and this week... and I just pray that I can get all of my kids healthy. Joe is still coughing a lot. It's better than it was, but... still crappy. And since Vicki's episode on Friday in the shower, she has been better.... but we still have no answers for that. And honestly, I am so scared every morning when I am in the shower with Vicki now. And now Ally being so sick.

It's hard enough when any of your kids is sick, but to have multiple problems with each of them simultaneously is making me feel very overwhelmed and helpless. You know that Vicki's emotions are, well, different. She finds things funny that most wouldn't. She laughs when others are crying etc... And it was so hard last night (well, a few hours ago) when Ally got sick while she was on the chair in the living room. It was one of those moments when I knew I needed to help Ally somehow, but you just feel lost, like you are moving in slow motion and wondering how to catch the vomit and clean her up and make her feel better without completely covering the house in yucky stuff... Anyway, while this is going on, Vicki was sitting at the table and she saw Ally throw up. And Vicki thought it was funny, really funny. So as Ally is throwing up, Vicki is laughing. And I have no idea what to do.

So... on top of all of the sickness, just day to day stuff is getting to me as well... I know I say this all of the time. But it happens all of the time.... and it takes such a toll on me. Not knowing if Vicki will move from one place to another and knowing I can't really do anything about it if she doesn't... It's so hard. I literally hold my breath each time we move from one place to another. From the table to the van in the morning before school. From the van to the school. From the school to the van. From the van back into the house. From the chair to the van for dance class. From the van to dance class. Every transition in dance class. Every. Single. Transition. From dance class to the van. From the van to our house. From the chair to the bathroom.From the bathroom to the chair.  From the rocking chair to the kitchen chair. And the list goes on and on. It's every single time Vicki goes from a sitting to a standing or a walking position. It's every single time. Sometimes it's quick. Sometimes it's not. And I wait. And wait. I know this may not sound difficult. But it is. It's so hard. And it's so overwhelming and exhausting. Emotionally. Physically. Sigh. And you know what else?? Having to talk about it all of the time with professionals on our team is just as hard. So often I am so tired of talking. It's years and years of going around about the same issues. Having tried hundreds of different approaches and plans. If I am not living it in real time, I am talking about it and analyzing it.

Geeze. I'm sorry I am such a downer today. I didn't mean to whine and complain so much. I think I am just tired. Thanks so much for listening to my rants. Love all of you so much. xoxo

Day 10. Year 5.

I skipped ahead to today's post (will go back later to the last 2 days). The reason for this is that I am very emotional right now and I have a lot I just want to write down.

For today, let's pretend that I am just writing a note to myself. It might not make a lot of sense. But I don't understand things, and if they made sense to me already, I wouldn't feel like I had to figure it out. I know I've said this more than once. But... I will say it again. I really, really wish I could take Vicki to see Dr. House. (Remember that show?) Sigh. There are just so many things going on with her medically. I don't understand. And I feel like there should be an answer. Something that we are missing. Something that we have all overlooked. I just want my baby to feel better.

On my personal facebook page I wrote a lot the past few weeks about a gut feeling I had. Vic was crying so much.... more than usual. She was crying about 15 times a day. Like, pained cries. So, we talked to our developmental pediatrician and based off of some of the concerns and symptoms she was having, he referred us to a pediatric GI guy. Just to recap. We loved him. His bedside manner was fantastic, he didn't make me feel stupid or dismiss my concerns and he was very good with Vicki. After taking a belly x-ray, he determined that she needed to be flushed out (which surprised me, because she goes every night.) Without giving you too much information... we kept her home for 3 days. I think it was a little better, but not crazy different. Although she wasn't crying quite as much, so that was good. After that we started her on a daily laxative the doctor prescribed. And then she had her sedated upper endoscopy. The doctor found evidence at the base of the esophagus and entrance to the stomach of gastric reflux. Everything else came back normal. So he started her on a daily medicine for that.  I thought things were going in the right direction medically. At least I was hopeful.

But this am as I was showering with her (which I've had to do for the last 3 years)... it was the same kind of thing that happened about a month ago... and a month before that.... Part of what lead us to the GI doctor in the first place. In the shower, her back was to me... at first I thought she was playing.. just swaying back and forth... but then I realized she was getting ready to faint? Maybe. I grabbed her by her hair because that's all I could catch (she was slippy wet) and turned her towards me. She looked white as a ghost and her lips were really, really pale. A very odd color. She was breathing a bit odd and I thought she was going down. I screamed for my husband, he's home for spring break..thank goodness.He came running. He held her up while I got dressed and she threw up in the shower. 2x. But there wasn't much that came up at all... (sorry, tmi again) no chunks at all of food just a little pale yellow and a bit of mucus. She had asked for water before she got in the shower a few times... a little odd in and of itself. . Anyway, while all of this was happening, my husband looked at her eyes and they were completely dilated. We even turned the bright lights on in the bathroom and no reaction. After she got out and sat down for a minute or 2, her color slowly started to return and eventually her eyes returned to normal.

I really don't know what the hell this is. It's scaring me. 3 times in the last 3 months that she's almost passed out while in the shower and threw up. It just doesn't make sense to me. Could she be having an odd kind of seizure? And it's only the few times in the shower, the rest of the day she doesn't throw up. She eats. She drinks. She's acting strange a bit, but she looks better the rest of the day.

So, please if you know Dr. House... can you see if he can see Vicki? ;) I'm kidding, of course. But I really don't know what to do. I just get this feeling that there is still something very wrong and that we are not getting to it. I have contacted Vicki's team of doctors. We'll see what they say now.

Thanks for listening. I'm sorry I'm not witty or funny tonight. I'm just scared for my baby. xo