SLEEP. We have always been blessed here. MM is one of the rare ASD kids who sleeps. Well, she WAS one of the rare ones. She has been off school since Wednesday. I am used to her getting up early. She goes to be around 6:30pm, gets up between 6-6:30am. She also sometimes gets up at 5:30 when I am getting ready for work. However, everyday that she has been off, she has gotten up succeedingly earlier. Yes, today it was FOUR AM! Yes, 4AM on a Sunday! I hope this is just a fluke & that the cold she has is bothering her along with messed up routine & Mommy being "sick" all week. We bought her a light up LED clock for her room and told her she should sleep until 6:30AM. I hope this works. If not, I am going to have to start going to bed at 8pm so I can get 8 hours of sleep. YUCK. I already go to bed around 9 or 9:30pm cause I have to get up for work at 5:15. I just do not function well without decent sleep. YAWN. I am ready for bed now...
Sorry I haven't updated yet. I have been zonked out on benadryl since Monday.
The good news first: The procedure went well. I did not have to have a stent or angioplasty. They only found a mild stenosis in the one kidney & it isn't anything to fix yet. There was nothing wrong with my aorta! The ultrasound thing was wrong! Bizarre, I know. All that worrying & stressing for nothing. Your prayers really worked! Thanks a bunch!
The bad news: I got a horrible allergic reaction from the dye they had to use. Even though they premedicated me, I am a giant rash ball. Also, sadly, we are back to square one in regards to my blood pressure. They now think it might be my central sinuses being so blocked contributing to it. I will be able to get my surgery on those soon. If that doesn't work, I will be worked up to have a type of pump placed to help regulate it. I just want off of all these meds!
We had a pretty good little Thanksgiving. My mom got called off, so she came over & made the turkey, saving DH from having to fix it. MM was very excited. She kept talking about our feast & was very excited to help make the turkey. When asked what she was thankful for she said "I'm thankful for you Nana and Mommy and Daddy". Cue the "aaaaaaaaaaaaaawwwwwwwwwwwwwwwwwwwwwww".
She did really amazing in her little play on Tuesday, which I was very happy to get to go to. I will try to upload a little pic & video of it soon. She did really well & we all had tears in our eyes for her. My heart was ready to burst with pride & love.
Hope those of you out shopping right now got some amazing deals. I still am not allowed to drive. Blah! I should be back in commission starting Sunday & hopefully DH gets his Christmas bonus today so we can get busy shopping! I also hope you had a great Thanksgiving. I did for I felt really blessed this year with MM doing well, my wonderful family & the good news I got earlier in the week. We often take our health for granted and should be thankful for it.
All the advice you guys gave was great! I **knew** I could count on all of you in cyber world to help me out. MM does not have a personal aide full time. My wonderful mom talked to the teacher for me & the problem seems to be solved for now. If it starts occurring again, I will most definitely speak to her case worker (which is not her teacher) and I will have it put on the IEP or have a meeting about it. Seems so silly to me that you have to tell someone to zip a disabled child's coat. For pete's sake, she has to have help going to the bathroom with snaps & zippers. What makes you think she can line up a coat zipper?!? DUH!
I have to be at the hospital at 0630, so just a little under 14 hours from now. I am nervous. I got a GI bug last night (or food poisoning) to boot. I am nervous cause my mom had my dad take the day off as well. My mother, God love her, is a nurse & would make her children put their guts back in & keep walking. She is actually worried for me. I was fine until I found this out (well not fine, but not as tense as now). I will update when I can. Keep storming heaven for us! Thanks =-)
It might seem silly & small, but this is getting on my nerves. It got really cold here these past few days (of course, not as cold as you northerners cause I so remember those days), but cold enough that we need to wear winter coats & hats. She has come out of school the last 3 days with her coat unzipped & no hat on. She can not zip her own coat & sometimes needs help with her hat. I made a big deal when she got to the car, but obviously Miss X does not get it. It is necessary to protect her ears with her having issues & probably needing tubes. It is also important to keep warm. How would you approach the teacher? She already avoids me like the plague when she sees me coming. She also avoids eye contact with me as well. I am starting to wonder if she is on the spectrum herself LOL!
I forgot to add that she also has a weakened immune system from her undiagnosed autoimmune issues. This too goes along with trying to keep her healthy.
Weird title, huh? Poor little MM has had a stomach bug for the last two days. She finally got better this afternoon. She ran a pretty high fever with it. Whenever she runs a high fever, she gets really engaged. So, although I hate the puking & she wants to sleep a lot, she is also HERE. She speaks so clearly & not just at you. We had several good conversations this morning, even if it did involve discussing how she threw up all over my pants yesterday. I enjoy these glimpses of her when they happen. I could tell when her fever broke cause she started repeating about her new book bag this afternoon. It was kinda fun while it lasted.
I am also a little concerned about one of the times she threw up. She doesn't really know what to do when she does vomit. She just lets it fly wherever she is & you have to lean her over. I am a little worried she might have aspirated, especially since I had to fish a spaghetti noodle out of her nose! (On that gross note, I will bring this post to a close)
Or lack thereof. That is what is causing all of this extra anxiety. I have absolutely no control over this situation. I am a type A for sure. I like to be organized and in control. I am a micro-manager. You would think that with a SNK, I would learn to roll with the flow easier. I have in regards to her. I wouldn't call it easier, I just tolerate it. I try my best to make sure it all goes well. I keep my palm handy at all times to organize the many appointments. She has her schedules as well. In that respect, her ASD goes well with my need for organization.
I try my best to fix everything & make sure it goes smoothly. I am a middle child, so I am a peacemaker. I mediated between the the older & the younger, while fighting my own battles as well. As an adult, I try to make life in the extended family as smooth as possible. I am not irrational like my older sibling, nor am I a huge dreamer like the younger. I am the level-headed one.
In my job, I fix people. You can't breath, I help you make it so you can. I am the one people come to for advice or when they need help. I am a take charge kind of girl. I step in, assess the situation & get done what needs to be done.
So, that is why I worry. This whole thing is out of my control. I have to rely on everyone else to "fix this" and make it so. I also worry cause this has been going on for so long & no one else HAS fixed. I hope that this will take care of everything & make me feel well. I am sick & tired of being sick & tired.
I have a feeling I am going to be rambling alot here over the next two weeks. I just don't want to burden those IRL with my fears. So, sorry, if you come here & feel like reading you will have to put up with me.
I do really know way too much about medical stuff. I wasn't scared too much before I went to the vascular surgeon. As I said before, I am scared $hitless now. I haven't slept well since I went. My sleep is very restless, weird & wild dreams that wake me up in a sweat. I don't do well without sleep. It usually means I end up getting sick, which I do not need before this procedure. I am very afraid of having to have a major surgery. I am worried so much about my little girl. She knows I went to the doctor on Tuesday and keeps asking "you feel better now?" . She knows something is up. It is her little instinct going off.
I don't know how not to be afraid. I know I have the right, but I just don't want to worry those around me. I am the "fixer", the "strong one", the "level-headed one", the "independent one", the "reliable one". I feel like with the last thing on my plate, I can't deal. It is if I have one of those cheap paper plates that is overloaded. I am fumbling to carry it & someone puts one more serving of food on there and that is it. I can feel the plate bending, folding in & ready to spill over. No one else notices cause they are too busy eating. They all have a reliable strong plate, but I got a cheap one cause there were none left by the time I got to get something myself. I always put everyone & everything else first. Now, I have nothing left for me. I feel as if everyone is already over burdened with all that we have been through the last 8 years or so. I already feel like DH has checked out on me. He can't handle crisis at all.
I just want to fall apart, but I can't. I have to be strong cause someone in this family has to keep it together. How much more do we have to go through? I know what we go through with MM is small potatoes compared to so many others. It just seems that we keep getting kicked over & over. I want to cry cause it doesn't seem fair. If I start crying, I don't think I will stop. Two weeks of crying wouldn't do anyone any good. When do we get our happily ever after? Does anyone?
UGH! MM is not dealing well with the time change. She is getting up before 5 every day & is exhausted & falling asleep before 6pm. We are trying to get her back on schedule. She came busting into my room this morning while I was trying to quietly get dressed for work. Needless to say, she scared the poop out of me!
Now for the update on my appointment. I am scared, but doing okay. I have to have an angiogram (it is like a heart cath, but they look at other vessels, not your heart)in a few weeks. They are going to check to see how big the narrowing is in my abdominal aorta & in my renal arteries. He wants to check the renal arteries since one test says I have renal artery stenosis & one says I do not. I asked if that meant just doing an angioplasty or a stent when he looks. He said he feels that with how large it appears on ultrasound (even though ultrasound tends to make it a little bigger) & the location of it, that is most likely can not be stented. He says I will probably be looking at a bypass graph on my aorta. He says it is good they found this cause most people die from it. I am keeping my fingers crossed that it can be stented. I am keeping the attitude that I have when it comes to dealing with MM's docs. They always give worse case scenario & then things often turn out a little better than that.
I don't know. I guess I know too much & am trying to be naive. I really am scared $hitless. I put up a good front for everyone else so they won't be scared. What if they can't fix it & I have to have a major surgery? What if something bad happens to me? What will happen with me being down from a major surgery for so long? How will I care for MM? Who will help take care of MM & me? Who will help take care of MM if something does happen to me? The stakes are high any way, but they are even higher with a SNK to take care of. We don't have a whole lot of support here- mostly my mom & dad then a few friends. MM will only stay with my mom or DH.
They have to get me fixed though cause we still have a lot ahead of us. We got a lot of livin' to do (as the song goes).
Just please, if you get a moment, can you pray that things will be better than they think? Maybe if we storm heaven, it will work out. Thanks everyone. I am off to bed to try to sleep. Nov 24 can't get here fast enough...
I am late in picking this up. Sorry, Christine! Go check her out & show her some love. She has a great blog that I found through another wonderful blogger.
Here are the necessary rules 1. List six things about yourself 2. Pass this award on to other bloggers
I guess they are supposed to be some juicy secrets. I don't know if I have six, nor if they are juicy, but I will try.
1. I wanted to have a houseful of children. I always said I wanted four mean-a$$ little boys.
2. When I was growing up, I was a serious tomboy. So serious in fact, that I made everyone call me "Matt" for about two years.
3. I sing constantly & make up silly songs all the time. This is okay, except I am a horrible singer!
4. I have never been real "camping" nor will I ever go because I will not be away from my blowdryer & hair products that long.
5. I once ate a whole jell.o mold (remember those tupperware jello molds your mom had as a kid?) full of orange jell.o cause my sister bet me twenty bucks I couldn't. She didn't pay cause I threw it all up. I hate orange jell.o now.
6. I scored a perfect score in english on my ACT. :::snort, pushing up glasses::: Yes, I am a nerd.
Well, MM failed her hearing test at school today. They check it regularly & have her history of tubes. They did a very thorough screening. There is something going on in the middle ear of both ears. Guess that means that bad mommy, who crossed off the ENT on our lists of specialists, was wrong. We DO need to keep up with them. UGH. Have to call tomorrow to make an appointment for her.
And speaking of docs, tomorrow is MY appointment with the vascular surgeon. I am really scared, but hoping it will be something "easy" to fix- if a huge stenosis (narrowing) in your aorta can be "easy". I am choosing to live in denial of all of this at the moment. Afterall, healthcare workers make the worst patients!
She was wanting to watch herself as soon as it was done. This has provided hours of entertainment over here for us since I have 12 year old boy humor. I have no halloween pics to offer- I had to work :-P
This is our little family's journey. MM (our only daughter) has mild cerebral palsy & autism spectrum disorder. She also has an undiagnosed auto immune disorder.
Come with us as we are learning to cope, navigating the system and riding the rollercoaster of having a child with special needs with a large amount of humor & sarcasm thrown in.
Life was all fun & games TILL THE SHORTBUS pulled up in front of our house...
From Wikipedia "Short Bus"
Short buses can be used by smaller school districts on routes with few students to pick up. However, a more prominent use is to transport small numbers of children to and from vocational school, or schools for children with emotional disorders or mental disabilities. Because of this second use of the buses, "taking the short bus" or other phrases to that effect has become a pejorative slang term used to imply that someone has a mental retardation or emotional problems.
I am a mom, a wife, a professional snot getter. I am blessed to have a wonderful mother who watches my daughter whenever I work and does all of the "extras" that MM needs. I am considered a "damn yankee" since I have lived in the south for 14 years now. I will always be a buckeye (a useless nut) at heart. It took me a long time to adjust to southern life, but I like it.