connor has been so agitated today......on days like today he's super uncomfortable ALL day long.  these are tiring days for me, too because unless i'm holding him, he's rolling and flipping all over the place.  so i can't really leave the room at all on these days.  here are some pictures i took today, over about a 2 minute period.  he starts out on his pillow........

 but he's so agitated and uncomfortable that he just starts moving.........

and moving............

 sometimes he moves this way.......

and sometimes he ends up this way.....






either way he'll eventually end up flipped over on his belly and will bang his head on the floor if i don't help him.  these days are hard!  i hate watching him be so agitated, especially when i feel like i can't do anything to help him. :(

he also makes lots of faces during these frantic spells.......they may look kind of cute, and some of them may even look pleasant, but since i know the pain and uncomfortableness behind them, they are harder for me to see.........here are some of the many faces of connor:

oh, how i love this sweet boy.....every day i don't think i could possibly hold any more love in my heart-----but the next day my love just multiplies infinitely!

 he's much less agitated when i'm holding him.
if i could hold him all day long, i would.......

we could sleep like this, couldn't we?

don't worry buddy, mommy's got you.

so aubrey has croup.  we think that's crap:(   but she's feeling a little better as the day goes on so hopefully tonight won't be too horrible.  connor doesn't seem to have croup (hopefully he won't get it)  but he is SUPER agitated today.....can't tell if it's because he's getting sick, or maybe he just feels bad for his sissy.  either way, he's extremely agitated and having one of his 'frantic' days.  boo!

on a brighter note, i've been able to catch up on all my cartoons and animated movies that i'd been missing out on.....after the 4th or 5th movie my mind just starts to wander......so i may just finish this post with some obscure rambling....

i've been thinking a lot about people, and life.  and how it's interesting how certain people come into your life at moments when you seem to need them most, even if you didn't even know you needed them.   or it's amazing to me that there's so many people in the world and you come across and meet so many different people every day, all the time, but there are those certain few people that you just connect with, and they make an impression on you that leaves a lasting impact on your life.  there are those people that maybe you haven't talked to in years, but you know that if you were to see each other it would be like no time had passed at all.  or i have friends that i spent only a couple months with so long ago, but have such a bond with that they could never be forgotten or matched.  then there are those people that seem to just pop up randomly, or you find out of the blue that just get you and you them, and they seem to come right at the time you need them (and you didn't even know them, but now you understand why you need them)  i'm almost certain that these things are not 'random', but i feel that Heavenly Father places them in our lives, at the precise moment they're supposed to be there..........which makes me wonder (and worry)-------how many times did i miss or overlook someone who could have been meant for my life, by not paying attention or being too distracted?? (i knew i shouldn't have stopped to tie my shoe that one time)   so i think i need to pay more attention to those kind souls i come across everyday.  it also makes me hope that i can be that random person in someone else's life too.

so those are my deep thoughts for the day.  and by deep i probably mean sleep deprived.  but they are thoughts, nonetheless. :)

well, the good news for the day is that i haven't seen any more seizure-like things going on with connor.  the not so good news is that aubrey has a cough.  i'm hope hope hoping it doesn't turn into anything worse like strep, or even worse than that-----the dreaded flu that's been pounding the nation.  i hate seeing her sick, but my biggest worry is her passing it on to connor.  his little body just can't handle sickness like hers can.  that sounds a little awful, doesn't it??  like i'm more worried about him than her?  i worry about aubrey, but just not in the same way i worry about her brother.   but sometimes i do feel guilty that she never gets my full worry or attention.  she is such a good kid, and i hope she never feels like i love her any less.  i love both of my kids more than anything. 

aubrey is my BFF.   that's what we tell each other every night before bed.  i say, "Best Friends Forever?"  and she says, "Best Friends Forever."  or sometimes she just grunts and nods her head yes. :)  

  she is such a big help to me, especially with connor.  she always has been.  it amazes me that she has never gotten jealous of him or the time i spend with him..... she has always just accepted it, and loved him even more for it.  i know that she knew him before they came to this earth.  they are so close in age, only 16 months apart, and the love that she has for him goes beyond anything i can describe.  it's like she was just waiting for him to get here.  almost like she missed him and was relieved he was finally here, with her again so she could look out for him.

i love this child so much.  she is such a special little girl, my baby.  my little aubrey girl.  just wanted to let you know that.

 connor goes to preschool 3 days a week. (soon to be 4, starting in two weeks)  on the days he goes, i drive him to school and take him in the classroom and usually stay the first 15-20 minutes so i can suction him and make sure he's ok.  then i leave and go do the grocery shopping or whatever other errands need to be done.  i always stay nearby, only a couple minutes drive away from the school, just in case there's a problem.  when i first started taking him, they would have to call me a couple times a week  at least to come back because connor was having 'trouble'.  usually with his breathing, or his oxygen levels would be poor, (or maybe he just missed me as much as i missed him ;)  but lately he's been doing a little better, breathing wise at least, and they haven't had any major issues. 

i always go in early when i pick him up from school, too.  i go in about 20 minutes before class is over to check on him and suction him before closing circle time.  today when i went in to pick up my sweet boy, his teacher told me she thought that he may have had a seizure.  she said that right after i left after dropping him off he was sitting in his chair and his left eye stared blankly while his right eye rapidly blinked for a lengthy period of time.  she said he wasn't responding to their attempts at getting his attention.  after about 4 minutes she said he came out of it.  this was something new that they hadn't seen him do before,.......i wish i had been there and seen it so i could judge for myself if i thought it was a seizure.  because there are things he does all the time that i'm used to seeing that would probably frighten most people.  however, i trust connor's teachers with my son and know that they are very competent and observant and that's why it terrifies me so much. 

because the doctors have no idea what he has, they can't give me any kind of prognosis or what to expect even because they just don't know.  but they have told me that if he's stable he'll probably continue to stay that way for a while, but if he starts to decline, he'll also  continue to decline, and most likely he'll decline rapidly.  some of the diseases i've researched (or most of them) involving degeneration of the brain describe seizures as being part of a period of 'decline'.   and once seizures start they usually only become worse and more frequent.  so this is why the thought, even the possibility of my sweet beautiful boy having a seizure terrifies me to my deepest core.  now i'm not sure if what happened today was a seizure or not, i'll continue to watch and see if i see something similar (i hope i don't) but the possibility that it was brings such a petrifying fear, a fear that i've been pushing aside and avoiding for a while now.  it's a fear i keep locked away, as if by not thinking about it will make it not real.

when fears become real they have such power in them.  they have the power to make you feel so many awful things at once, to torment you.  i don't know how not to fear, but i know that 'perfect love casteth out all fear'.......and i love my son perfectly, as perfectly as an imperfect being can.   so even though i'm terrified about some things, i'm going to try and just love more.  it's the only thing i can think of to do....

so today's post is one of slight frustration.  and by slight i mean more than slight, just to clarify.  ok, so connor is currently riding in an infant/toddler car seat, one of those grow with you kind that goes from rear to forward facing, and it has been great for him......however, he outgrew it oh...maybe 2 years ago. (he's a tall boy)  here's where the problem starts.  a special needs car seat that is big enough and supportive enough for my son (or any child that requires one) costs a minimum of $1000.000.   (everything 'special needs' is ridiculously expensive, and it's sad because you have to have it and there are no cheaper options.  but that's a whole other issue)   with the help of connor's wonderful physical therapist at school, we found a foundation that said they would be willing to pay for the car seat if insurance won't help.  this is where the frustration comes in.....  a couple months ago i took connor to a physical therapist to be evaluated so they could write a letter of medical necessity to send to the insurance company.  they did, along with a prescription from his doctor and another letter of necessity.  they sent it all to the insurance company.  after about a month of not hearing anything i called our insurance company to ask about the status of the request and the first lady i talked to told me it had been denied.  ok.  so i called back a week later to see if they could send me the denial letter because the foundation that was going to help us needs a denial letter before they can proceed.    the lady i talked to that time said she wasn't sure what i was talking about because they never received any referral for a car seat.  (frustration has now risen.)  so. we faxed it all again, and i got a call right before Christmas from a lady saying they had received the information and it was under review and that someone would get back to me before the new year.   sweet.  fast forward to today.  i hadn't heard anything from anyone (maybe she meant the next new year??) so i called the lovely insurance company this afternoon and spoke to a woman who told me the claim had been denied.  great. ok.  so i asked her if they could send me the denial letter.......and she says to me, "now what information were you talking about that you had sent? some referrals?  i couldn't see anything like that."...........ummm. what?   at this point i'm confused. did she even remember just talking to me 2 minutes earlier?? it's almost funny if it weren't so painfully frustrating.  so i explained to her everything.  again.  and she put me on hold.........and she never came back!!  two other people answered the phone while i was on hold asking if they could help me.   um, i don't know, can you??  at this point i don't think that's even possible.  each of those ladies subsequently put me on hold, the last one taking my number and telling me someone would get 'right back to me' as soon as they found what they were looking for.  apparently they have not found it yet.   i expect their call sometime in the next decade.  if i'm lucky.    sigh...............................

"Come stop your crying, it will be alright.....just take my hand, hold it tight....

...i will protect you from all around you.  i will be here, don't you cry....

                                              ......for one so small, you seem so strong...

                                   ......my arms will hold you, keep you safe and warm......

                     ......this bond between us can't be broken.  i will be here, don't you cry....

            ....i know we're different but deep inside us, we're not that different at all.....

......cause you'll be in my heart.  yes, you'll be in my heart.  no matter what they say, always.....i'll be with you. i'll be there for you always. always and always........"


that's from connors' 'song', the tarzan song.   i sang it to him for the first time during his first hospital stay......and have been singing it to him ever since.  i have never gotten through it without crying.  i put up the quote, 'for one so small you seem so strong' in his room.  it describes him perfectly.  this bond between us can't be broken......that describes us perfectly.  i love my son.