Thursday, July 30, 2009


Ah, so another month goes by. Time flies even as it crawls.

I haven't posted because my mom once told me if I don't have something nice to say, don't say anything at all. But today I'm just going to say whatever I want.

I wake up each morning in a cloud of sleepy, crabby fog. I'm not sleeping well, partly due to AJ waking several times each night. His teeth are finally coming in, and one of his ear tubes has fallen out, so his ear canals are refilling with fluid. He is in constant discomfort, if not outright pain, and it causes him to wake up crying and digging at his ears. I've tried tylenol, not sure if it has helped or if I've just gotten lucky on the nights he's slept well. (Tubes are being replaced, but not until August 21.)

I then spend my days racing the clock. AJ has to have his first feeding between 8 and 9, which causes some difficulty when he decides to sleep past 8. An 8 ounce feeding that would take a "normal" baby about 1/2 hour to drink takes anywhere from 45 minutes to 1.5 hours for my son, through his g-tube. He retches terribly when the formula hits his stomach in the morning, and we have to go very, very slowly so he can digest with some relative comfort.

Then he has to be back in bed for a morning nap between 9:30 and 10:00, or I will miss my window, he will become overtired, and he will not sleep. Then I have to hope he wakes on his own before noon, preferably at 11:30, so we can get started on lunch. Because he won't really eat any solids, we need another full hour to complete another 8 ounce tube feed, and time to vent the air from his belly (meaning we leave the tube open for about 15-20 minutes). He does sit in the booster and nibble a few cheerios, take maybe 3 sips of water from a cup, and maybe occasionally dip a teething biscuit in some baby food and taste it. But he definitely does not "eat." So we race through as best we can, rushing to complete lunch and digest in time for therapy, which is 4 days per week at 1:30.

Truth be told, I'm not even sure he NEEDS all this therapy, as he is now crawling, standing with assistance, performing all the "skills" a baby his age should be, etc. The only things he is not doing are pulling to a stand (which Daughter did not do either, until she was much, much 14 months maybe?), and eating. I don't know that we need two days of PT and two days of OT every week for these issues. But I am scared to change his treatment and then, several years down the road, have a problem and question why we didn't take advantage of all this free therapy.

But this schedule is a real bummer for us as a family. Daughter is suffering through it, more than any of us. She can't go anywhere or do anything in the mornings, except maybe play outside a little, or race to the grocery store with me between 9 and 9:30, which is our only real window of opportunity Monday through Thursday. When AJ has his therapies, she is constantly being told to sit down and be quiet or find something to do to keep busy. She doesn't understand what these ladies are doing at our house every day - to her they are coming to play with her little brother, but no one comes to play with her. So she becomes a real attention hound during his sessions, and ends up driving everyone nuts. Also as a result of this, she works extra hard to get my attention, both positive and negative. Lots of times...negative.

I try to take the kids to the playground when it is nice, immediately following therapy. We have roughly from 2:30 till just about 4:00, then have to get the baby back in for afternoon nap and feeding. If I don't get him fed between 4 and 5, I will have to make his night feeding even later, meaning I get even less sleep. And then of course there is making dinner and somehow keeping the 4 year-old from destroying something while I work. After that it's cleaning up from dinner, bathing the kids (which thank God we can now do at the same time...AJ can sit up in the big tub now), herding them toward bed, reading stories, preparing formula and feeding tubes, feeding the baby, and then perhaps knitting for 15 minutes before crashing hard.

Somewhere in there I do the laundry, keep the house relatively clean, make sure there is food in the fridge and cupboards, make Hubs' lunches each morning, take a shower, make the beds...

I don't know. It's not exactly the life I ordered. Perhaps I am selfish in wanting a bit more down time, a bit more time for some quiet with my own thoughts, more time for life to proceed naturally rather than following this insanely regulated schedule. Is it any wonder I am not blogging? What the hell am I to blog about? I'm psyched when I have time for knitting or sewing, but there's never a moment to take a photo or compose an entire post about a project I've completed. Life is a series of tasks to complete right now, and I pretty much just move from one to the next. I'm tired and cranky, and sometimes bitter and resentful too.

And everyone says it will get better, it will get easier...but the fact is that it may not. We may get used to this life, but that doesn't mean it will be better or easier for any of us. Right now I am beside myself trying to figure out what to do about preschool for Daughter. She should go, she really should. But it's expensive, for one thing, and for another, how am I supposed to get her there each morning? I look at trying to get AJ out the door in the morning and it practically throws me into a panic. Because his morning feeding makes him physically ill, and because we cannot move the times around or he won't meet his daily caloric requirements, I can't just pick him up, throw him in the car and go. It doesn't work that way for us. But Daughter can't sit in the house for another entire winter just waiting for AJ's schedule to allow her a few brief moments of attention and playtime. I have to think of something.

Anyway. That was long-winded. Just thought I should say something in case anyone was wondering where I've been. I'm here, always here. Just...well, busy is an understatement. But I am here.


Karen said...

I'm sending you a hug. Can you feel it? I wish I could do something to help.

HangerMom said...

God bless you, Kate. Your post tugs at my heart, because I feel the million pulls and the craving for more time of my own, and the things keeping me from getting it are less urgent than the need to feed your child. You're not selfish for wanting more. You're human. And you're doing a wonderful job of caring for your family.

Preschool is not mandatory if you can't find a way to make it work. But are there any half-day afternoon options that might work better? Maybe during AJ's therapy? I'm sure you've thought of it, but just an idea. Our school here has a 12:45-3:15 preK, for instance.

Mrs Lemon said...

Kate, I can't even begin to imagine. I will stop complaining about all the stuff I "have" to do when I clearly am not half the woman you are. ((hugs))

Louise said...

I'm sending you my good thoughts and prayers.

Jenn said...

I'm so sorry Kate - I know I can feel that way most days too - you are not alone! I hope you can workout a way to get your big girl to preschool - it would be good for both of you!
Thinking of you....