Wednesday, February 13, 2013

The Swallow Study

Ironically, this is Feeding Tube Awareness Week! A swallow study is often performed in conjunction with an assessment for a gastrostomy tube (g-tube). This was Jennah’s first swallow study since 2008. It was nice to see the same speech pathologist that worked with us nearly 5 years ago. I recall Jennah was seated in her infant carrier back then and had several seizures during the study. She choked, screamed, and spat up. In the months following that first swallow study, she would regress from the seizures and lose her ability to suck and swallow. She eventually fell off her trajectory on the growth chart and was dehydrated and malnourished. At the time, we felt that we were “giving in” to the g-tube. Now we realize that it has not only given her (and us!) a better quality of life, but it has saved her life.

As I wrote in my last entry, Jennah has been making great strides. One of her accomplishments has been the visual cue of lip-smacking (for you seizure-savvy folks, we’ve confirmed that this is not a seizure Winking smile ) when she has dry mouth and she is maintaining her secretions (drool) quite well. She also seems interested in the smells (although sometimes adverse when it comes to Thai food!) of food. Of course, we strive to give her everything she desires and to enjoy all of the great things life has to offer, such as the taste of really yummy food!

Cue: swallow study! We are now in a place where we can consider working on Jennah’s oral motor skills. She will never eat full meals by mouth and we have no intention of removing the g-tube. We have accepted the wonders of the g-tube. We love the g-tube. We embrace the g-tube. Celebrate the g-tube! OK, you get the point. We do want to let her enjoy the taste of food and perhaps do an even better job with her secretions. What’s more is the possibility of increased vocalization! Jennah has the cutest, sweetest voice … we want to hear it more! Of course, there may be times that we won’t want to hear it, let alone teaching her to use “inside voice”, but we’ll tackle that if we ever get to that point. One day, one skill, at a time.

What is a swallow study? It’s known as a video-fluoroscopic swallow study (VFSS) or modified barium swallow study (MBSS), and they make her swallow a bunch of barium (makes chalky poop) and video x-rays are taken during the act of swallowing. The mechanics of swallowing are crazy complex and amazing.WP_000803 I’m not going to go into the whole science of it, but they basically make sure that the liquids/food goes down the esophagus and that her muscles are able to close and block off the trachea quick enough to protect against aspiration. We mixed barium into some strawberry yogurt and she swallowed it like a pro. We then put barium into water, but gave it to her only a few drops at a time from her bottle. Again, not much of a problem, although delayed. The water was room temperature and she couldn’t “feel” it in her mouth. Next, we gave her the barium from her cut-out cup. This would be the “challenge” test. I gave her more than usual and she managed it pretty well! There was the slightest bit of a “leak” into the epiglottis, but she was able to repeatedly clear it out. Yay, Jennah!

So we now have the green light to begin oral motor therapy and to feed her by mouth as tolerated and accepted. I’m going to share some sweetened condensed milk with her. Jennah is glowing … not just with pride, but with the massive amount of radiation she’s gotten from so many x-rays! Between CT scans (no radiation with MRIs) swallow studies, gastro-anatomical studies, 10+ hip x-rays, upcoming spinal x-ray … I digress and know the amazing body recovers, but you gotta wonder … Winking smile

Friday, February 8, 2013

We love it here!

I know … I say it every time, but I’m a terrible blogger. I don’t know if I even qualify as a blogger at this point. Nonetheless, our dear friends are inquiring on Jennah’s progress and I hope that others who may be beginning this challenging, yet incredibly rewarding, journey will find solace and support in these words.

I initially started this blog as a way to express my grief, rants and rage. But as the years passed, grief has turned into acceptance and extreme pride. J_stand1012I do get saddened when I look in the closet where cute dresses are hanging in a row … dresses that I never get to put on Jennah because they only get crumpled up beneath her or twisted up in her feeding tube. We’ll never have a picture of her running and twirling in a breezy little spring dress. Instead, we get proud pictures of her in a standing frame. But there will always be something supporting her, or someone holding her up; I worry that she can never truly be free. Perhaps it’s better to think that she’ll never be alone; she’ll always have someone by her side and always be loved.

Jennah has made amazing strides since my last post. Most notably, she is going to school 4 days/week and actually likes it!! You may recall that preschool last year was extremely challenging. Jennah was often ill, spitting up, crying, and having seizures. However, we had a very productive summer with medication adjustments, a lot of horseback riding, and the continuous feeds. She no long spits up and is able to control her drooling much better now! Her seizures still pop up from time to time, but they are overall well-controlled. I’ve been saying it a lot, but we really haven’t been here before, and you know, we like it here! Life seems almost “normal” and dare I say, some days are a little bit predictable. I take Jennah to school in the mornings and can actually get a couple hours to myself! I do have the phone near me at all times and dread getting a phone call during yoga or if I’m further away in Seattle, but so far, it’s been good! I don’t know what they do at school all morning, but she comes home smiling and dancing every day. I do know that the teachers, therapists, and staff at her school, Cascade View Elementary, are amazingly kind and supportive … we are so fortunate to be where we are.

Our last visit to the neurodevelopmental clinic has resulted in a very busy, and somewhat stressful, month! It’s been a long time since I’ve had to juggle so many appointments, but this is a good thing.DSCN4122 We are going to revisit her oral motor skills and do a video swallow study. The results will help outline a feeding/speech therapy plan so that Jennah may be able to enjoy a little bit of social eating and perhaps vocalize a bit more. We are also going back to ophthalmology. This one is very exciting! We think she is learning to see a little bit! We’ve been noticing some gazes from her and her school had a vision specialist visit and confirmed that there is definitely something brewing with her vision! So we’ll want to see how we can help her reach her fullest visual potential … go Jennah!

And lastly, people are trying to get me unattached from Jennah’s hips. This piece is for me. I can’t seem to leave her side. I rarely even travel more than 10 miles away from Jennah’s school when she’s there. I know I have a very dependable support structure, but I can’t let go! So … one of the first steps for me to overcome my addiction to Jennah is a “durable medical equipment” assessment. The doctors (and my husband) want to move Jennah out of my bed. The biggest challenge with Jennah right now is sleep. It is common for children with cerebral palsy to have difficulty sleeping as their muscles tend to get tight or their brain is always on fire since everything little action that we take for granted, like sleep, is that much more challenging. However, Jennah can now move around and reposition herself better in her sleep now. I no longer need to wake every two hours to rotisserie-flip her. Am I to blame now for her restless nights? Me? really??! Oh yes, I am dreading this appointment for sure! Winking smile