Friday, June 20, 2008

A praying people

Yesterday was the first day of Ella's new therapy. We don't really have a lot of time for another time commitment on a Thursday afternoon, but then again, we can't afford not to have this one, either. About a month ago I was reading a pamphlet from the new yoga center down town. They were advertising all the programs available for kids - including "baby yoga," which my mom was taking Owen & Ella to the following week. I flipped the page over and saw an ad for therapeutic yoga for kids with feeding problems and emotional issues. This woman does gentle massage and stretching and cranial sacral therapy in a fun laid back way, while helping the child along the way. I was so happy and felt so strongly that this is what we were to do that I cried. I really did. And then I looked at the price tag: $90/hour - and I cried even more. It is the kind of thing that if it worked, we could put no price tag on what Ella would gain, but still, it was $90/hour. I was mad and annoyed and sad and still crying when I remembered: $90/hour therapy saved my life (it was a little different kind). I did some investigating and found out that she is a First Steps therapist as well. Hhhhmmm. So, I called my service coordinator, Pam, and within and hour, we had lined up that same therapist to come do therapy at our house, for a fraction of what it had cost. Pam told Stacy, our new therapist, "This mom knows how to work the system. She wants you 4x a month." Done. It was awesome. I felt like super woman for about 2 minutes because I worked the system and got what we needed and was gonna pay hardly anything for it. But by then, we were at Barnes & Noble and I couldn't see either of my kids, but heard books dropping, and super woman put her normal clothes back on and frantically cleaned up a mess.

And so we started our new therapy yesterday. I was running late coming back from vision therapy in St. Joe, Michigan and Nick was supposed to be here doing dishes and sweeping floors, but he was late too. So, 10 minutes before Stacy arrived, we were frantic and I was pacing and pouting and tense. But, I can turn it on real fast, fortunately. She first wanted to demonstrate on me and immediately said "Wow, you're really tense. Stressful day?" I was found out. I can't fool a massage therapist, can I?

Cranial Sacral Therapy is --- well, let me just led Wikipedia do what they do best: A craniosacral therapy session involves the therapist placing their hands on the patient, which they state allows them to tune into what they call the craniosacral system[1]. By gently working with the spine, the skull and its cranial sutures, diaphragms, and fascia, the restrictions of nerve passages are said to be eased, the movement of CSF through the spinal cord can be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.

And so, they lay hands on the patient. And the pressure is very light, almost too light, but after a minute or so, the area that you are touching loosens up and feels different. There is fluid that flows through your spinal cord that is called craniosacral fluid. It often gets blocked up and can be relieved with some gentle pressure and some good intentions. Or, as she said, if you are praying people, you pray for healing in those areas and put everything you've got into it. God does his thing, I do my thing and the fluid will move and relieve some tension in the body. Stacy quickly found that Ella's chest, upper back, ears, mouth, neck, g-tube scar and belly button were all places that needed work. Those are all of the areas she has experienced some trauma.

And although she has improved in so many areas, I know she is still traumatized. Nick carried Ella into the hospital room to see my grandma on Thursday and she started to shake. A moment later when the nurse walked in, she started crying and yelling at her. I didn't believe she had forgot, but I didn't know how much she knew. That is very upsetting to me. Before she was born, I had done some studying of babies with birth trauma and NICU trauma and it did help when we lived in the hospital and I knew some ways to make her feel safe and to make it less traumatic. But, still, I knew. I couldn't help but worry about her emotional health day and night. And we have been doing so many therapies and exercises and praying and we have seen many improvements. But, I have still felt like there was a missing piece: Someone to cater to her emotional needs (and maybe even mine.) Stacy explained how to do the belly button therapy, with some gentle touching and some big prayers. She explained that if Ella is sleeping, she might quickly sit up and scream - not because its painful (it is light touch), but because it does what it is supposed to do: releases the emotions. She repeated to me what I should say to her when that happens. "It is ok. You are safe now. Mommy has you and won't leave you. All that bad stuff is over and you are safe and loved and we will protect you." And I started to cry, as if God was speaking that right to me. And I wanted to hug her and say "Will it really be ok? Is it really all over?" But, instead, I hardened my heart and pulled it together and thought I could save it for blogging later - a place where I feel free and almost always cry. For the rest of our session, she said those exact words to us 2 more times. And each time, I cried. And I again saw how Ella will be healed through therapy, and I might get a little healing as well.

Sunday, June 8, 2008

It started with a chair.

I am sitting at our counter, with a cup of fresh coffee in hand and some nice, calm, uplifting, soul clearing music on. I am watching Ella, with a tired ponytail on top of her head, stuff food into her little mouth. Her eyes are wandering, because she doesn't have glasses on yet. I wonder how much she can see me from back here - so, I smile. She smiles back. She is joyous today - even more than normal. You see, for the first time in her short life, Ella drank out of a straw a few minutes ago. And to you, I know that has little significance, as Owen drank from a straw successfully at 6 months old. And here we are, 15 months old and she just FINALLY figured it out. It is just a straw. It is pink and bends a quarter of the way down. It is cut shorter, to make it easier. It sits in a stubby yellow cup with a worn yellow lid. It is covered in yogurt and banana goop. It holds some weak juice mixture that is nearly tasteless. But, it worked. We sit with therapists 4x per week and talk about this and that and work on this, that and the other. We love them and they love us. They have all fallen in love with Ella, just as most people do. They are constantly in awe of how she catches up, her newest dance moves, her new sound, how fast she recovers, etc. I would hate to be the parent of one of the kids who doesn't come along as fast as Ella has - this has been hard enough. But, as far as feeding, we are at a stand still. She has mastered yogurt and jarred food. She is eager to stuff finger foods in her mouth. She snatches "adult" food of our plates and devours it down to to the smallest of crumbs that we can't believe she can even see. Right now, she is sucking on a mesh bag filled with banana. These particular "feeding accessories" should have a blow up tub that comes with them. There is no way to slurp a mashed up banana and come out clean. Anyway, the food consumption is pretty average for her age. (I never thought I'd be excited about someone calling my child 'average') But, it is the liquids that keep us dependent on a button, so carefully placed in her belly, that connects to a short tube, which holds a syringe where we pour the milk. I want to get rid of that damn tube. Yes, thats right, I said damn. (Please do not comment on the use of that word). I want her to taste what goes in and decide for herself that baby formula, even the expensive organic kind, tastes like dog food. I want her to be able to take medicine by mouth and not mind being sick so much after she tastes the yummy pink kind. I want to forget her tube at home and know its not an emergency and she will be able to drink some other way. We have tried 50 sippy cups, fat straws, skinny straws, cups, bottles, spoons, etc. I talk to other mom's of kids with G-tubes about what to try and what worked for them. We make different potions of yogurts and milk and juice and put it in plastic honey bears with aquarium tubing. Our therapists order expensive things online that we try for a week or two, but we just can't get her to take in the liquids and get them down to wear they want to go. Months ago, I bought a box of straws at the request of the speech therapist. We cut some of them short and started using them as droppers into her mouth. It is a very slow and frustrating way to feed a baby, trust me. It would have taken 2 hours to do one feeding!!! So, we try that from time to time, always prepared for her to suck from the dropper, where we would then put the straw in the cup and hope she reenacts it and gets a big gulp. But, she never did. And this morning, as I'm making coffee and toast and tiptoeing around to keep Owen asleep, I can tell Ella's mouth is dry from all of her Cheerios. I looked in our baby cup drawer, but there was nothing clean for her. And as I looked at my full sink of dirty dishes, I thought maybe we could try the straw today. And I didn't cut it and I put it in this strange juice and I felt a cold sensation on my fingers, as I held the straw up to her mouth. The juice was going up and down in the straw and her short little cup was filled with a yogurt-Cheerio mix. But then, she smiled such a big smile that she couldn't keep in and a whole lot of liquid spilled out. I couldn't believe what I was seeing. She had to have gotten some juice in her mouth to spit it out, right? After a minute or so, she demanded a refill, which I eagerly gave her. And by the end of it, she had consumed about 3 ounces. 3 OUNCES!!!!! That is half way to eliminating 1 tube feeding a day. That is a big step to a big goal. And maybe it is a fluke, which we have had before with other new cups and fads, but this required a skill that she wasn't able to master without going through the pain of surgery and the greater pain of time. And so, we will pray and try again at lunch and see what this kid can do.

Monday, June 2, 2008

Barely hanging on

Today is one of those days where I'm just trying to hang on. It is one of those days where I'm counting down the hours till bed time and praying for an angel to stop by and offer to babysit. By 10 am, we had yogurt everywhere and no more coffee. My "Plan B" was to get Nick home as soon as possible so I can lock my self in my room for a bit and get composed. But, when I tried to call him, I realized my phone was broken. I feel stranded on a desert island.

Lately, whenever I am freaking out and have Nick to rescue me, I go lay in my bed. My dream is of course to take a nap, which cannot happen for about 16.5 more years. I wrap myself in my big down comforter and lay on my green organic cotton pillowcases (thanks, michelle) and shut up. It feels a lot like what I feel a cloud would feel like. I often close my eyes and stop moving and drown out the sound. I sometimes pray, I sometimes count to 10, I sometimes just try to get still. I am not necessarily even trying to hear God, but just trying to feel less of me and more of Him. Sometimes it really works.

I think the first time I "swaddled" myself I was just trying not to scream so my children couldn't hear it.

Babies, especially babies like Ella, love to feel safe. They were cuddled and squished so nicely in that warm cozy womb for so long and then BAM - hello big, bright, loud, scary world. I was never too great at swaddling. My kids could always "bust out" in a matter of seconds. Duct tape would have probably helped, but I figured that would be a good reason to be out of the running for "Parent of the Year" award. Nick was much better than me at wrapping the perfect swaddle. For some reason, kids feel safe and loved when there Dad wraps them up and holds them tight.

I'm drinking coffee from a teacup that says "May the God of hope fill you will all joy and peace. Romans 15:13." It is the last drops of a pot that is empty. It is cold and has soy milk in it and I need a new pot, but, some days, even little things feel hard.

My phone just rang. Yes, the broken phone. The phone that I couldn't get to do a darned thing this morning, rang. It was Nick. Nick, my strong and brave husband that wants to give us the world. He said he was just calling to tell me that he loved me so much and that we were going to have a great life. He said he will do whatever it takes to make sure we have the life that we dreamed of and that God promised. He said today is going to be a great day and that everything will be OK. He had no idea what had just gone on here, in my head. I started to cry. He told me he would see me in a minute. He was just calling to share a little joy and a little peace.