Friday, November 21, 2008

We knew he could do it!

Owen had his oral/motor feeding evaluation today at Holly Ridge, the EI center that he is enrolled in. He did FABULOUS! He was calm and happy - even during and after D., the speech therapist, used a rubber toothbrush in his mouth while she held him still (to gage his oral sensitivity). He has recently LOVED to have his teeth brushed so the fact that he did so well was not much of a surprise to me. I thought perhaps that he might feel a bit cheated since the toothbrush did not have the yummy, Weleda kids mint toothpaste on it, but if he did, he certainly didn't make a fuss about it. I did feel there was a good chance he would become unhappy when placed in their "feeder" chair, in a room that was foreign to him with sounds of very active toddlers emanating from the hallway. But he was a champ and smiled a couple of times at us before we even got started on the feeding part...

Just like at home, he opened up like a little bird each time I showed him the spoon and tapped him on his lower lip with it while saying "open" and "more." He happily took several spoons of applesauce (with butter) and marinara sauce (with lots of garlic and olive oil, of course). And as he typically does, he even smiled a couple of times after the marinara sauce. That's our boy. Yes, O loves food and the more garlic, the better. D. did note a "weak swallow," something that we assumed was the case given his CP and low trunk tone. Fortunately, according to D., this ability can be improved upon over time with practice. She was not worried about it too much because he swallowed several times with each "bite," swallowing all of his food, slowly, and not spitting any of it out. He is indeed very thorough and careful (and tidy) when he eats. D. said he did excellent - much better that she anticipated he would given how long it has been since he's taken the majority of his food orally - and that she was surprised at how much he enjoyed the food and how calm he was during the evaluation. She was very happy that there was no feeding aversion and no choking, coughing or noticeable aspiration.

Since aspiration can be "silent," before moving on to substantial oral feedings, and per the neurologist's request (he will not "approve" oral feedings or release oral feeding recipes that adhere to the ketogenic diet until we move forward with the next step), we will have a swallow study done at Children's Hospital in the Spring. D. explained the process to me today - they mix barium into a couple of his favorites foods that we prepare and bring for the study. O will sit in a feeder chair, like the one he used today, and I will feed him enough food for them to obtain images of the efficacy of his swallowing, but more importantly, images that will also tell them if any of the food is being aspirated into his lungs. The trick with kids like Owen is that they have trouble coordinating the closing of their airway with the opening of their esophagus when they swallow food. Any food that is taken into the lungs has the potential to cause serious infection. In talking with one of the experts on this at Children's a few weeks ago, a wonderful occupational therapist who has seen Owen twice and who is well known across the country for the work she does, it seems that Owen is not a very high-risk kiddo for this type of complication. Even if he does aspirate a bit of food, R. reminded me that we we ALL do this on occasion and since O has shown that he is very healthy, is not prone to infections, including respiratory infections, the risk relating to minor aspiration, (if he is aspirating at all), is greatly reduced.

Since I am pregnant and the swallow study involves a series of x-rays, we will wait until after February to perform this next test. Until now, we have been given the thumbs up to continue exploring tastes and helping O to improve upon his swallowing abilities.

After a LONG week of MANY appointments, this totally made my day.

Sunday, November 16, 2008

All's well.

I apologize for once again not posting in several weeks.

We are all very well. Owen is stable and happy the majority of the time. There are still periods during the day when he is fussy and it takes a bit of juggling (from one seat to the next, to the bed, to the Ergo Carrier, to holding him...) to get him calmed. He is so much more aware of his surroundings and when sitting in his beanbag or Special Tomato seat, his gaze follows us across the room. This is such a HUGE milestone for him. He pauses and then turns towards the voice when someone he knows enters the room and he hears them. When I touch his nose and slide my finger from his nose to his lips then to his chin and say "Where's that smile," he smiles. He is, in fact, becoming so much more aware of himself and his surroundings that Kelsey and I feel that most of his fussy periods now are a result of his frustration at the lack of control he has over his body.

He vocalizes A LOT. His sounds are often very throaty and we can tell he is trying very hard to make the whole system work. He just can't get the vocal cords to operate like he wants them to. We encourage these sounds and let him know that we hear him and understand. It is the best we can do for now - to give him the confidence and encouragement he needs to keep trying.

When he is calm, he's full of smiles. It really gives us a sense that he is happy and that he loves us. It is difficult when you don't have this love reciprocated in the usual, tangible ways - through eye contact, smiles, coos - as we experienced for the first several months of O's life. What's funny is that I know O is looking at me when he looks just above my head or just to the side of my face. This is how it is with kids with CVI - they "see" better out of their peripheral vision. So when he looks at the top of my head, or my ear, I know he's actually focusing on my face. This has become "normal" for me - I don't even give it a second thought anymore.

O's neurologist has a new nurse - she's fabulous. Knowledgable, responsive, kind. She told me the other day that I must remember that Owen is a child with seizures, not a seizure-child. She reminded me not to let the seizures define him. This was in response to me letting her know that after our December 1st appointment with Dr. S for a f/u visit, we were going to be taking a few months off from appointments, tests, etc. so that we can have some peace at home both before and after his brother is born. We COULD have an EEG to see what is going on from this diagnostic stand point. We COULD have a swallow study (video flouroscopy) done to take a look at the efficacy of O's swallowing. Instead, we will continue to have blood draws each month at his pediatrician's office on Bainbridge Island to make sure he is still tolerating the keto diet well and get his weight checked every so often to make sure he is gaining well, but not too much, too fast. We will pass on all of the other non-emergency tests and appointments for a few months. I KNOW that if Owen could talk, he would say that he is just fine with this plan.

We DO have an oral/motor feeding evaluation set-up at the EI center this week. This will be performed by one of the Occupational/Speech Therapists there and will give us a better idea of Owen's oral feeding tolerance and abilities. Honestly, I think he'll do great. We've been giving him small tastes of keto-friendly foods (a mixture of unsweetened applesauce, butter and cinnamon, for example) and he chews and swallows slowly, but with ease and without choking or gagging. Sometime in late Spring, we'll have a swallow study done to ensure that no food or liquid is being aspirated. Once he's passed that "test" with flying colors, we'll work with Dr. S to incorporate some oral feedings into his day. Mealtime is such a social event and food (and cooking), such an important part of our lives - we want O to be able to share in these joys as well.

The ketogenic diet is still working great.

I've been in full nesting mode the last few weeks - cleaning, cleaning, cleaning, painting rooms (no VOC paint), organizing and rearranging. Every surface in our house has been wiped down and every drawer and closet cleaned out and organized (a big thank you to Janet for all of her help with this). I'm trying to get many appointments out of the way before the holidays AND in anticipation of my February 8th due date. This week is a busy one with appointments each day - EI f/u, PT, cranial-sacral, OB/GYN, oral/motor evaluation. We are looking forward to spending an early Thanksgiving on Bainbridge Island on Sunday with the Marshall/Hethcote/Kelly family. Next Wednesday, we leave for Oregon for five days to spend the actual Thanksgiving holiday with Mac and Margery (Grandpa Marshall and Nai Nai). Upon our return, we'll jump head-first into the busy holiday season at GFC (we have yet to feel any major effects from the economic mess and hope this continues) until we close for the holidays on the 24th. We've decided to lay low in January and work on getting lots of sleep, finishing up projects at home and staying relaxed. It will be good for the three of us to have some quiet time together before O's brother arrives.

I was reflecting this weekend, on my sentiments from this time last year - my posting included a reminder to give thanks for your children, their health, your spouses and lovers, your family, your friends. I received a call from my friend, Angie, this last Saturday. A friend and former co-worker of ours, in her late 50s, passed away unexpectedly last week. I had just spoken with C. on the phone a few months ago. Her daughter had been trying to have children for years - with many losses late in her pregnancies. C. was so excited when she called me - she was finally a grandmother. So once again, at this Thanksgiving, I am reminded to be thankful for all that I have - right now.

Happy Thanksgiving to you all!