|April 19, 2009|
Hi there and happy Sunday. I haven't written much this week - it's been a busy one and we have lots to think about. We had our visit with Cody's neurologist on Tuesday. It usually takes us awhile to get out of the 'funk' we feel after we talk to the neuro. The short version is, Rufinamide is doing nothing. The VNS is doing nothing. Seizures are worse than ever, longer than ever. He continues to really make strides in therapy most days so that is still good news. But his weight is really eclipsing everything else right now. For the last year or so I've been banging the gong that he's too skinny. All his Dr's said he is thin, but that's normal for a mito kid. But it's getting to the point now, that the Dr's are finally agreeing. His charts show that he hasn't gained weight since he was 2. He's gone from size 6 diapers to size 4 diapers. He's 3 feet 5 inches and weighs 34 pounds. He's weighed up to 36 pounds, but is going backward. He just looks kind of shocking when he's naked or just in a diaper. We've seen 2 nutritionists, constantly see a gastro Dr, yet we can't get his weight up. If you consider mito disease, it makes sense. His body already can't produce enough energy to run itself. So any nutrition is turned instantly to energy and burned up - there is no chance for fat stores. He literally can't eat enough to gain weight. We've tried nutrition drinks, protein mixes, avocado, oils, nut butters.......EVERYTHING. In short, my life has revolved around getting him to eat, finding new things for him to eat, getting him to drink......for years. He typically doesn't like to drink much (he will down about 8 oz a day) but that's not nearly enough. So we've taken to feeding him gatoraide through a syringe just to keep getting liquids in him. Sadly, he's much more apt to take something out of a syringe than a cup because he's had medicine out of a syringe multiple times a day his whole life.
All that to say, his neuro says he needs more nutrition to make more energy for his body to use. And it just may be time to do a stomach tube. I know nothing about tube feeding - haven't even researched it much - but we do have an appt. with his gastro dr. tomorrow to begin that conversation. From what we discussed with the neuro, Cody could still eat orally, but we can supplement through the tube and even do a night feeding. It would take SO much pressure off me (and Cody.) I'm sure he hates being barraged with food all day long. There are lots of pros and cons. The biggest con being that it really 'feels' like a feeding tube means he's spiraling down. I know that more dramatic thinking than truth, though. This weight thing is nothing sudden, it's always been a battle. But he's growing in height and each growth sport makes him skinnier and skinnier. So I'm trying to embrace the idea as a positive - freeing him to just be a kid and not fuss when I try to get him to drink all day or eat. It would help with weight gain, hydration, energy....it might even help with his huge gas issues.
So we'll talk to the gastro Dr. tomorrow and see what needs to happen. The neuro said that Cody isn't necessarily 'spiraling down' as it feels. He says with mito disease and intractable seizures, kids just have seasons of thriving and seasons of struggling - and there's no real rhyme or reason to either! So we're trying not to panic, and just wait this tougher season out. I pray the seizures die down. I had them turn off the VNS for a week just to see if maybe it was somehow irritating him - I thought maybe that stress was creating the longer seizures. But even with the VNS turned off, they are as bad as ever. So we'll turn it back on next week. We're at Children's Hospital mon, tues. and wed. dealing with all of this. Not so much fun to think of.
On a brighter note, Don and I had a date night last night with our friends Mike and Rosanna. We met at a nice restaurant and talked for 3 hours! I had two people here caring for Cody and Casey - my friend Jennifer and her son Trenton. So they were in good hands. That felt good.
There are so many things that strike me on a daily basis. I'll never have time (or the talent!) to write a book - but I do want to take note of these things just because it feels good to do so. For instance, today I was swinging Cody on his beloved tire swing. It's a big truck tire that sits on top of a platform swing and it hangs from our ceiling. I can get him swinging pretty good which he craves. Today I was giving him a good high velocity swing - and in a split second he decided he wanted off and he stood up and walked right over the tire and off the edge. Luckily I caught him but if I hadn't, he'd have careened right into the big slide in the room - or hit our TV set with full force. He has NO concept of danger. He would step off the edge of anything. Even if you stand next to him and scream "NO" he would be completely oblivious. He stands on our couch and walks right off the side without even looking down. He will put literally *anything* into his mouth. There is no concept of 'food' versus 'non food.' And there is no way to teach him any of these abstract concepts. He is a 6 month old in a 4 year old's body. Today I was changing his diaper on the floor and he just looked up at me and kicked me as hard as he could in the face. It had nothing to do with malace, or intention. To him, a human face is equal to a wall or any other inanimate object. Now part of it was my fault because I know better than to let myself slip for a second and not think about where his arms and legs are at all times, because if I am in the line of fire, I could get cracked with any appendage or his head. So it's my responsibility to think ahead. But it's just SO odd to have a child who is so unaware. Obviously there's always a thought for the future - 'what will this look like when he's 6 feet tall?' But even in the present, as a mother, it is so counter intuitive to experience a child who can't grasp these simple concepts like cause & effect, gravity, hurting someone. I just read in People magazine that an autistic child who was grown (late teens/early 20's I think) and he beat his mother to death. They lived together and she was his caretaker full time. He killed her - without even realizing it. Now mind you I don't even GO there - if I truly let myself worry about such things I wouldn't make it through each individual day. But I read that magazine story and just nodded my head - thinking 'yep - I could totally see how that could happen.' And the crazy making counter intuitive part is ---- I get beat up by Cody all the time. Head butts, kicks in the head or stomach, pinches, bites....all either in search of sensory stimulation (he bites everything - why not me?) or sheer unawareness of where his head or body parts are in space. Much of his day he stomps his feet on the floor as hard as he can - just to feel the feeling of it. He has no idea that a person's head is any different than the floor. We (of course) are trying to teach him the difference. We use prompt words like 'gentle' or 'NO!' But so far, nothing sinks in. I pray it will.....but who knows.
So what do you do? Fear the future? Fear the present? Wear body armor? Haha. I think, for me, the answer is to simply be grateful he *can* kick. Be grateful he has the strength to walk off the edge of a swing. Live in gratitude. And give it to the Lord. We do all we can - we make our home as safe as we can - we try to teach Cody as much as we can - but at the end of the day - there's only so much we can control. We take one day at a time (sometimes one minute at a time!) We pray for him and about him. And then we squeeze our fists real tightly......then release and let it GO. That's how we do it. We've made it 4 years doing this - and now we're shooting for 4 years and one day. Tomorrow we'll aim for 4 years and two days. But isn't that our calling as Christians anyway? "Give us this day our daily bread....." "don't borrow trouble from tomorrow...." "fear not.....for I am with you." Even if Cody weren't "Cody" we'd still be called upon to focus on today, not tomorrow. To be confident in our path, not fearful. To trust Him with all things. These are all life lessons....not just Cody lessons. I just happen to have the privelige of learning these important truths as a result of having given birth to an angel. I'm glad Cody is my teacher - it makes the lessons easier to embrace. It is impossible not to love him - no matter how many times my hair is pulled, or how many times I'm pinched, bitten, kicked. He doesn't know better. It teaches me patience, lovingkindness, unconditional love. The fruits of life with Cody are not measurable - they are so many in number. He makes our whole family better, wiser, more grateful (and more tough!)