Wednesday, November 25, 2009

Teresa you ROCK....Update

No blood in any poo sample. The GI doc called me personally, we talked about what he's on and I mention the pepto (because of you Teresa. I didn't even remember I gave it to him until you told me, it could be that) I gave him some for two days because I didn't have Zofran.

YEAHHHHHHHHHH nothing is wrong with my kid YEAHHHHHHH

Reminder for self............DON'T use pepto with Corb.

I'm at the library ha ha ha

Caradie and Corbin

Monday, November 23, 2009

Good news, I don't know

Well the stool test came back negative for any blood, OK so that's AWESOME news but???? why then???

Anyway I'm heading to my mom's to drop off her cord so I will now be gone for awhile.

I had a wonderful girl (Hi Nicole) tell me today to just bring my computer to her and her hubby will look at it. Lets hope he really don't mind LOL Wouldn't that be great if he can fix it. And so generous (Thank you Nicole's hubby)

Caradie and Corbin

Update

Bill came home from work for a few mins so I could just run and get the stool sample kit from the lab and as soon as Corb wakes up, I'll have him go potty and I'll get the kit back to the clinic as soon as Austin comes home from school. Bill can't really leave work again, it's bad enough he's going to be home later then normal anyway (that means I'll have to make supper....least fav thing)

A nurse just called, Corb's doc wanted her to call me to check how things are going. She's a wonderful caring doc. That whole floor is so great. The three front desk girls (Hi...end Kelli, middle Kelli and Dannielle (sorry if I spelled it wrong) and all the nurses (which I can't ever remember their names LOL except Julie because she has a special needs daughter) And even some of the on-line nurses know him (with them being only on the phone I always try to ask for the same person, Hi Sara. Today someone helped me though) Even most of the other docs know him too. He's like a little celberity up there lol even today the Superior clinic lab tech knew who Corb was and he don't even ever go there lol

I wish he would wake up but the poor kid has been up since 3am so I don't blame him. I napped for 30 mins before Bill got here :-D

Dehydrated

Corbin has been up since 3am, he had pooed black poo again. And then at about 6am he threw up but just a little.

Nanci, I don't think he could be dehydrated?? I have been still tube feeding him and giving him his normal amount of water throughout the day and he's drinking his choc or strawberry milk too. Unless bleeding can cause it??? (by the way THANK YOU so much for helping me think)

I called the nurse at 7:20am, she just called me back at 8:45am ugh, she's going to update the doc and the GI and see whats next.

His breathing is still a bit different too. And he's still bah, so I'm calling the pump people today too.

I'm borrowing my mom's laptop cord for today so I will update if the docs do something today.

Caradie and Corbin

Sunday, November 22, 2009

Out of commission...there goes my social life lol

We have no computer anymore :-( And it's going to be awhile before we can afford to fix ours or buy a new one too, damn it lol so anyway I will just keep taking videos and when we get back on-line there will be a TON lol

A quick update about Corb.... his poo is still black, I'm calling first thing in the morning. Nanci, Great!!! I've been feeding him this whole time too??? (he's finally eating pretty good again too) I'm sure going to be PISSED off if there's something wrong with my kid.

He's still so out of it too. It's been over 24 hours, you would think that the pump dose being changed back, he would be back but he's just not. I'm going to be on the phone so much tomorrow Ugh!!! Not only for Corb but I have to call around to figure out why my half sister is in jail (again) too.... Brain overload LOL

Anyway..... lol I wish everyone well and hope to catch up with everyone soon. All my special needs mom's give your kiddos an extra big hug from me and Corb.

Caradie and Corbin

Saturday, November 21, 2009

Quick update...well it was going to be

I'm soooo allergic to dogs, apparently LOL my damn face is killing me but the doc put me on something until the shots start (hopefully) working. It's just stupid I have had dogs and cats all my life. I'm 33 yrs old, I get a cold in July and never stop coughing, weird?? damn it lol

Anyway Corb's poo is still very black and now his G-tube site is hurting him. I got the tube issue all under control though. Gave him a little ibuprofen, washed up the site extra good and put on the ointment I have always used when it gets irritated. On-call doc said thats what he would have told me to do anyway LOL

Sadly I'm pretty sure I know whats causing the bleeding and it's kinda my fault. I try so hard to keep him off meds, that I took him off the Pepcid and now it seems he likely has ulcers. It's so hard to be a mom, when being his mom requires me needing to be a nurse too and I have no idea how to be one. I just want whats best for Corb and being off all meds I thought was right but I guess not. I restarted the Pepcid last night. I, so hope this isn't anything serious. Nanci I'm with you, I wish they would have like kept him or something. But nothing, no one is seeming to be worried even. One good thing though, he's not anemic. His counts are actually on the high side of normal.

So today I'm very emotionally wore out about the pump issue too. I feel so guilty. You know you listen to the docs and when they make a mistake and it affects your life because you just agree with them because they know best and that mistake delays life, you just want to scream. And more emotionally hard is the fact that Corb is very loose but more doped up loose, then loose muscle loose. And then I feel bad because I kinda like him like this, not that I want him drugged where he acts like he's in funk land but today it's just hard, he's been so mellow and not afraid of things and still happy and giggly but just way soooo blah. I'm hoping that changing the dose back and then increasing the bolas doses slowly, it will help him get in between loose but not drugges but it's more wait and see if I made the right decision. UGH!! Over a year of trying to get the dose right. NOT what I expected, thats for sure but hopefully it's still the right decision.

Anyway so for this being a quick update huh??? As hard as it is to be Corbie's mom, I would never change a thing. I love him with all my heart but I do wish his life wasn't a guessing game, I ain't never been any good at those lol :-(

Noah is officially 12 on Monday. He only gets cake and ice cream that day. Because honestly we haven't figured out what to do yet. His birthday is so close to Thanksgiving, friends aren't always around. We'll figure out something though, it will just have to be the week after or something.

I have a ton of videos but my stupid computer's memory is full again so I can't even upload the pic/videos off the cam. Santa PLEASE....I want an external hard drive for Christmas LOL

Caradie and Corbin

Friday, November 20, 2009

DARK BLACK poo

Well things with Corb aren't going so well. Since Monday he has had incredible pains, vomiting, nausea and he has been having darker and darker poos, until today when is was DARK BLACK. I called the front desk girls (thanks middle Kelli) of Corbin peds office and she got a message right off to Corb's GI doc, he called me personally and wants to know right away Monday morning how his poo looks over the weekend and wanted me to get him in right away to have his stool tested so I called into the medical home emergency number (thanks Sarah) and she got him in right away today. The doc (thank you Dr. Valentine) did 4 tests, all of which take days but she called me tonight and explained the way it looked and smelled it was full of blood OMG what is wrong with my son and also today he has become so blah and his tone is so weird, he's really looser but still super tight I just don't get it. The docs that did the test and changed the pump dose on Monday wanted his dose changed back NOW and of course Corb's PMNR doc is in Iraq, his nurse practitioner wasn't in so I either, got a hold of the other clinics nurse that has a pump machine or drive all the way back down to the cities OMG what next. THANK YOU again Kelli she rocked, she found the nurse for me and they got Corb in right away and the nurse was able to change it back to contentious (thank you Evie). So one thing down, now it's the waiting game for his poo. Can you believe one little tummy could give us so much trouble? UGH!!!

Corb's puppy is really neat. For being so young he's so calm, hardly mouths (bits) and doesn't even lick as much. He's a doll for potty time too. We have a little routine. I have a little container of dog treats that goes with us outside. I shake it and say go good boy potty and while he goes he stares at the container lol and as soon as he's done I cheer good boy potty and he sits down for his little treat and if he goes poo he gets two lol. When he has an accident in the house I tell him bad boy potty lol and he gets all sad lol I'm happy I gave in and got a puppy.

Caradie and Corbin

Thursday, November 19, 2009

Pics

Dropshots

Caradie and Corbin

Wednesday, November 18, 2009

Meet Jak

I got Jak today after Corbie's GI doc apt. Which went OK, some of you may remember that Corb has always had gastro issues, he gets this terrible cramping, which can last days, where he postures = every thing gets tight, his hands are in little fists, his little legs just pull up with his toes curled and his face OMG it gets so bright red. I feel so bad because I thought I had it under control. Now I just have no choice, I have to put him on another med :-( but the GI doc thinks the Neurontin will help control the pain all the time so since I just can't get a handle on this tummy issue, I'm doing what I hate to do but I'm starting it tonight :-(

Update on this tummy ache.....he was crying or screaming all day until about 2pm, when I just held him, rubbing his tummy (which I have done many times since Monday night) and he FINALLY let out a REALLY good toot LOL I hate that I have to be happy about passing gas LOL

We have had the puppy now since around 1pm, he is so sweet. He only had one accident in the house and one (oops my fault) in the van eeeewwww he pooped, it was nasty LOL He did have a bit of food aggression but thats over. He goes outside and just stays right by us and goes potty when you tell him too. He's going to be easy to train YEAH for me lol

Meet Jak

Caradie and Corbin

Tuesday, November 17, 2009

In the ER

After we got home from the cities Corb started throwing up and then all day he has been screaming. Decided it was time to bring him in.

Caradie and Corbin

Monday, November 16, 2009

Pump test update

Home and mostly settled, 9:30am-6:30pm yuck 9 hours to find out the pump is working fine. That unfortunately means though the Baclofen might not help him, EVER but they are trying a different dosing system (4 bolas' 4x a day) So in normal people terms lol that means he will get a larger dose every 6 hours, instead of a small doses 24/7. I should know by tomorrow around 6pm if it makes any difference. I think they are willing to still go a little higher to keep trying but if his tone doesn't change drastically, the pump is outta here. That then, will mean this was the worst mistake of my life.....

Caradie and Corbin

Sunday, November 15, 2009

Kinda scary

We are off too the cities again tomorrow, we leave around 9:30am, drive for 3 hours for a 30-45 min apt and then drive another 3 hours to get back home, yippie skippy so that means we wont be back until about 5:00 - 5:30pm YUCK I just love being gone for a whole day for one thing. And this time the reason is kinda scary too. Corb has to have a test on his Baclofen Pump, they will numb his skin over the pump and they have to stick a needle threw his skin into the machine and they are going to draw out the medication from the catheter (which is, what enters into his SPINE) if they can draw the med out smoothly all is good with the pump but.........!!!!!!!!! he can overdose when they go to put it back in if their not careful. An overdose of Baclofen can be life threating. That's when driving to the cities really is TOTALLY fine. He will be in a huge children's hospital just in case and they've done this a million and a half times.


Caradie and Corbin

Friday, November 13, 2009

Explaining

The reason I don't post videos here on his updates is, because it takes like an hour to upload videos onto blogger for some reason. It's just take minutes for dropshots

I did write in details on most of the videos though so at least I'm kinda updating LOL

Sorry for the inconvenience

Dropshots

Caradie and Corbin

Wednesday, November 11, 2009

Reaching

My baby is still learning 4 1/2 yrs after his accident. They said he would be a vegetable. Keep proving them wrong baby bear. DropShots

Sorry for no updates, life and facebook are distracting me LOL

Caradie and Corbin

Saturday, November 7, 2009

CORD

I found my cord, so happppppy lol

Videos

Feel free to add us on facebook...
Caradie and Corbin

Wednesday, November 4, 2009

Explaining isn't easy...taping is easier lol

Since I don't have a camera (I got approved to get one through Corb's waiver program though, so it should only be a few more weeks yeah) So I will have to just try to explain todays amazing therapy session. OK so Jason had him in a sit and Corb and I were playing with a nob puzzle and he was doing a very nice job getting his arm/hand with the nob, to make contact with the board, well I instead asked him to give me the puzzle piece and I set the board next to his leg, and whispered to Jason, not like he's really going to be able to do that but.....and then OMG he did it, he looked right down at the board and pulled his little arm over there and made contact, I almost fell over. NEVER would I have though, well obviously I didn't think he could do it. And to top off the session, while rolling down the wedge 4 times he only needed help ONCE, one time wow and that time it was only because his little elbow got stuck under his side. It wasn't for lack of trying though, he was just throwing that one little leg trying to flop him self over but it just would GO lol.

OK warning VENTING below lol If you don't want to hear it stop here......

I can't remember if I have talked about therapies recently. But Corb got approved FINALLY for OT and ST (MA only approved ST to do feeding therapy, so he doesn't need to learn to communicate what foods he wants...dunno???) and we are still waiting for PT. The kid just had a Baclofen pump put in, he should be having intensive therapy and we still have to fight for just a little. It's just unfair being poor and having to be on state aide made me give up on my child, I just don't get it??? Why did paperwork and a state run therapist be given the right to hold up his case for the past 2 years. Makes me mad, sad and most of all embarrassed to have to live in this state. But we got something and Corb LOVES Jason and he's working on liking the ST ladies lol he's only them once each lol. I'm very happy with the little bit, it's better then the none.

Caradie and Corbin

Tuesday, November 3, 2009

Falling apart...

Sorry for the lack of anything. I don't want to bore anyone with the bad times and right now, these are some pretty bad times. I'm just having such a hard time trying to deal with my family and Me right now. It's hard to take care of me, without it affecting the care I would other wise be giving to Corb and everyone else. I feel very guilty that this last year has been a huge step back for him, well us, all because I wasn't and haven't ever taken care of me. I just hurt so bad mentally and physically ugh! I also miss sharing him with everyone, I have always enjoyed sharing him with all of you faithful followers but as I said who wants to hear bad stuff and now I can't even share videos of him, my stupid camera broken (I'm going through withdrawals not being able to tape my baby boy lol, I miss that part a lot). But things are at least on the mend (I hope) lol. So just bear with me, I'm trying to pull myself together.

Corb is doing amazing though!!!!! He's reaching way more and way faster. He can roll down the big wedge with only minimal assist (most attempts). He's looking at things much faster. One thing minor bad thing for Corb, due to him being on such a high dose of the Baclofen pump and him not really being loose enough, the doc wants to have this test (which is in the cities 3 hours one way UGH!!!) where they stick a needle into the pump, through the skin mind you, to test the catheter before he feels comfortable increasing him anymore :-( I'm very worried I made the wrong decision putting the pump in him. OK so one more bad thing for Corb but it's necessary. Corb's having Botox December 14th and that doc is putting him in ankle serial casts for approx. 3 weeks. He isn't going to be a happy camper. And since he isn't going to be able to do much anyway, I'm having surgery on my hands around that time too. I have moderate to severe carpal tunnel. I need to be able to feel my fingers LOL

No matter what though Corb is the most amazing person on this planet. He has something about him, that's just so......I don't even know, he's just so deep (as my shrink says lol) I have said many times before, Corb makes my world go around. I don't know where or who I would be today if it weren't for his love. Thanks little buddy.

I have been trying to live a little and since I don't really get to leave the house unless it's for like docs, therapy and other apt. I have really gotten into facebook, although I can't say I understand it totally yet lol but please feel free to add me/us. Until I delete the other account search for Caradie AndCorbin or even just Caradie but pick the account with just Corb's picture. I finally figured out how to delete the other account, but I'm just giving everyone time to switch over. Could ya just put a little note saying your a follower? I'm trying to make sure negative people aren't my friends. Thanks.

Bill has one now too (Bill Fritze, picture...he's on his bike). Which is kinda cool, we now have something more to talk about. Austin has one too (Austin Fritze, picture...is Roller skating) but he's in some trouble so he won't be on for a few days LOL. Thanks everyone!

Caradie and Corbin