Monday, November 23, 2009

A New Week

My attitude has greatly improved after a weekend with friends and family. Especially yesterday at the market. So many family members and friends have shown up to the Market to visit, even on cold rainy days like yesterday, knowing how important it is to me. I can't believe the support that I've gotten from everybody in this endeavor. Its been hard work, and honestly, I'm looking forward to the end, but I still have next Sunday and the 2 day holiday market the first weekend in December, and even more family have promised to attend and show support, so I'm looking forward to that. The management must like me too, because I was the 'featured seller' in the Market bulletin, and my bags were featured on a "This 'n That" segment Friday at noon on Channel 9!

Manny's MRI is rescheduled for 3 weeks from now. Thursday his OT from BCW came by, and, giving the fact that I still hadn't stopped crying from my mental breakdown on Wednesday, I completely forgot, and Manny was asleep when she showed up, making for a miserable OT appointment. I explained, and promised to be more prepared during the next session. Manny is still attending the pre-school 2 days per week and is doing really well. The teachers seem happy to have him, and he doesn't cry and plays well when he is there.

Jake is doing wonderfully, both in school and at home. We had another meeting last week to discuss him getting occupational therapy at school. The OT denied him saying that the sort of OT that he needs (deep pressure, sensory, balance, etc) isn't the kind of therapy that she's comfortable giving saying "You know how people are these days, they might not understand seeing me roll a child in a run and giving them deep pressure." Ugh, so... you aren't comfortable doing your job. I will continue to do what I can to meet his needs in that respect at home, and more than likely we will pay out-of-pocket again this summer to go see Cindy at Tips.

I'm off to start a new week. I'm hoping that the Thanksgiving shopping rush includes my store this year. I was desperately hoping for a couple of hours of childcare for Manny this morning, but Mamaw just returned from a 2 week stay at my Aunt's house. She seems to be doing well, but sounded tired yesterday when I spoke to her so I didn't ask. My goal today, even with Manny's help, is to do inventory and get my shop in order for the upcoming (*hopefully*) shopping rush, finish some orders that have become a bit late, ship everything that needs shipping, take pictures, and put up listings. In other words, I need to get rid of this sinking feeling that I'm falling further and further behind. Off to get started!

Wednesday, November 18, 2009

The MRI appointment that wasn't

I got everything packed and ready for our trip last night. Steve took today off of work so that he could get Jake on and off the bus and spend time with him this afternoon. The MRI appointment was at 8 with registration at 7 AM, along with the hearing test, blood panel and then a follow up visit with Dr. Agulera (hemi/onc) at 3 PM. We were in it for the long haul today.

I woke up at 4:30 this morning, got dressed, then changed a sleeping Manny's diaper and was in the car by 5 AM. I arrived at the hospital shortly before 7 and went to registration. During registration, while I filled out the mound of paperwork, Manny began fussing and got out his sippy. He had two sips, and I was right there... letting him, when the receptionist said, "If he's a sedate he can't have that." Oh yeah, I thought, and took it away. She sent me across the hall, and informed the receptionist at MRI that he'd drank fluids. They sent us home, because his appointment could not be moved up one hour, they were too full. The nurse from MRI who informed me giggled and shrugged and said, at least three times "Well, at least you'll never forget again." "Like I said before, you won't forget again." I get it, lady, you're sending me home as punishment for not following hospital orders. I was sobbing, and had been since the first receptionist chastised me and asked me "Didn't they tell you? It says here that they talked to your husband yesterday, did he not tell you no fluids after 6 AM?" YES, everybody fucking told me... I'm an idiot. I get it. This is the first time I'v broken down during any doctor's appointment. I cried all the way home, and I'm still upset. I hate this.

Maybe contributing to my "bad attitude" is the fact that Manny never sleeps. On a typical night, he goes to bed just fine, around 8:30 or so. He's no trouble at all to put to sleep. He regularly wakes up around midnight or 1 AM and is awake until 4 or 5 AM. Sometimes he's just awake, sometimes he cries the whole time. We've tried a zillion different methods, he's been checked for ear issues, reflux, and a host of other things. I get a lot of advice on this, and all that makes me sure of is.. we're doing that wrong too. I haven't had a night of this that I didn't end up breaking down for at least a couple of hours in the middle of the night. Steve and I tag-team dealing with him every night. After many nights of this he will usually sleep for a couple of nights all night, making us think.. really? is it over? Then he goes back to no-sleep. The nights that he does sleep, I wake up constantly, wondering if he's OK.. because if he's not awake, then is he breathing? If he sleeps late or naps during the day, I have work to do, or Jake to care for, or something. Sometimes Steve's parents actually ASK to take him during the night, so that we can rest. I'm grateful, I really am. I think the last night at her house wore her down a lot though.

Its wearing on my sanity, laying there with him... feeling him get still, then holding my breath, literally. Is he asleep? Surely he is, he's been up since midnight. Oh gosh, I have to pee/cough/move my foot because its asleep, but I won't. I'll be still... ten whole minutes.. Nope, he's still awake, and I have to get Jake ready for school in 45 minutes. Oh God, make it stop.

Sometimes I have horrible thoughts after night after night of this. I honestly feel sometimes like I've done something WRONG by having children. I should have known. I've never been a happy person by myself, but when I met Steve, it was like the light finally shined into my life. Nothing could go wrong. But now, not only have I created a miserable partner, watching me be unable to bring myself up out of whatever is wrong with me, but I've created two children who seem also to spend most of their time being miserable. I should have known I wasn't capable of dealing with this, and I should have made better decisions. I feel like I've created some sort of black hole and that I should have stayed alone. I don't feel right asking anyone to care for my kids because I can't stand the run-down of how miserable they made the caregiver. I can't even understand why Granny and Pops even want to deal with them. I know they love them, but they have the option to love them from a distance, and thats gotta be too hard to pass up. A comment was made about what hell I put my parents through as a teenager in regards to the trouble I'm having dealing with my own emotions. Does that mean that it "serves me right" that I have disabled children because I was a bad kid? Have I not done anything good enough EVER just to deserve to hear Manny say "Mama."?

I guess whining doesn't really help anything. I was hoping to get everything over with today, and get whatever news it would be. Good news? Will any future appointments with Manny ever be "good news?" I'm afraid that they'll be either "nothing has changed" or "the tumors are growing." Staying the same being the "good news". I'll reschedule all of the appointments, and try this again, and yeah... I won't EVER forget not to give Manny fluids before any of the dozens and dozens of MRIs that he is certian to get in the future.

Sunday, November 1, 2009

OT evaluation, and "The Bug"

Manny's evaluation with the Occupational Therapist from Babies Can't wait was Thursday. S.H. stayed for about 30 minutes and asked a few questions about Manny. Honestly, I haven't been impressed with BCW this time around. Its been over a month since his arena evaluation, and now we're set up with an O.T for once every other week.. and she doesn't seem flexible at all with her schedule since she only comes to Dalton about one day every two weeks. In fact, what we really need is a SPEECH therapist, since his speech is the most delayed. Children of Manny's age should have a vocabulary of over 500 words and should be speaking in short sentences. Manny, still, only has a couple of partial words. I jumped the gun when he started saying "car" and made the video. He has not said that word since that day. I suppose I am going to have to start pushing the issue and get him private speech therapy, whether paid for by the State (which we are entitled to) or paid for out of pocket.

I am enrolling Manny in the preschool at the church just a mile from here. It is the same school where we tried to send Jake a couple of years ago and it didn't work out (through absolutely no fault of their own). Even though his birthday is one week past the deadline, I found out from a friend who works there (thanks Holly) that there are only three boys in the two-year-old class, and two teachers. The director said they'd be glad to have him. He will be attending 2 mornings per week for just about 3 hours. It will be great for him to be around typically developing children of his age. I really hope it works out. My stomach churns with every endeavor like this, since I've never had good luck with.. well... anything concerning being a parent.

This Friday evening the Carithers family was supposed to come up for a visit, spend the weekend, go trick-or-treating, put the kids to bed, party like adults Halloween night, go leaf-looking and whatever else we could get outselves into. Friday morning I awoke with a bit of a scratchy throat, but Steve got Jake off to school and I dealt with the five poodles that were dropped off at 6:30 AM. By 7:45 AM I was curled up in a ball sweating and shivering with fever and in pain from head to toe. Yup.. the FLU! I tried to finish the poodles with Manny tied to my back but simply couldn't do it. The school called to let us know that Jake was passed out in the floor, also with a fever. Steve took Manny with him to pick up Jake while I fell asleep in Manny's room (for some reason). He returned and told me the amazing news that Pops was coming to the rescue. Get this, even though Steve's mom was out of town, Pops showed up and snatched Manny for the entire day. I don't really know what would have happened otherwise. Steve's work-day was too demanding for a day off.

So... the entire weekend of fun was called off and I am finally on the road to recovery after a couple of rough days. Jake is off-and-on feeling better, Manny is just now getting the flu, and Steve is... well, we're crossing our fingers for him. He took care of me and waited on me hand and foot all weekend. I hope I don't have to return the favor to him under the same circumstances. I'd rather be nice to a well husband. I don't know what I'd do without the amazing men in my life.

Another work-week starts tomorrow. The was supposed to come out "end of October".. and I haven't heard anything. I'm getting worried. Its Ok, though, I have a lot of stock and sick kids to take care of. Work can wait.

(Below) "Flu-stock 2009"