Again, it has been a while...oh well. By now, you would think I would not even expect that I could post once a month. I suppose it takes a HUGE event to force me to make the time to blog!!
About a month ago I found some interesting groups on Facebook that connected me to people and resources regarding people with feeding tubes. Some of my favorites are:
Feeding Tube Awareness - great resources!
Belly Buttons - Jordan is using their belly buttons every day!!
TUBEalicious Tushies - just received some med-port covers - hope to never feed the floor again!!!
Through these resources I feel I have become more educated on what I can be doing to better care for Jordan and her tube. The products available are amazing and if money were not issue, I would keep buying things!!!
These resources have, in turn, led me to an amazing organization that recently posted a video on youtube.com. I keep watching it over and over and over. I posted it on my facebook page, but I encourage everyone to please watch this video!!!
In this video, Rydr is very similar to Jordan in several ways. His listed diagnosis is Hypotonic Cerebral Palsy...Jordan has a diagnosis of Cerebral Palsy - class 1 and Hypotonia...it seems like they just combined them. Jordan had a very difficult birth and was hospitalized soon after...Ryder was in the NICU for 6 weeks following his difficult birth. Rydr was sitting upside down on his mom's lap in the waiting room...upside down is Jordan's favorite position!! Jordan receives school speech therapy 2 times a week and OT once a week and privately receives speech/OT 2 times a week...Rydr receives speech therapy 2 times a week, OT once a week, PT once a week and is also seeing the speech path, Jan, in the video 2 times a week.
Along with these similarities is one HUGE difference..."he has never taken a break in feeding therapy." Rydr has been receiving feeding therapy since being in the NICU...Jordan has received feeding therapy off and on since her diagnosis of failure to thrive at 9 months old. Every time we are told to come back in 6 months or a year. Most recently, we were discharged last March with the instructions to bring her back when she was more willing to follow instructions (or "behaviorally responsive"). That vague direction left me feeling as though there was no more we could be doing for her.
Until I saw that video.
Now, I am seeking every opportunity to give Jordan a chance to learn to swallow. Even though she may not be fully responsive to directions, she could still benefit from the practice of swallowing and various techniques of therapy. I had never heard of VitalStim therapy and now I have read several articles (including: New Study) about it and understand how and why it could benefit Jordan. I have spoken with Jordan's current speech path at the Center for Childhood Development and she recommended looking into evaluations at the Cleveland Clinic's new Pediatric Center for Airway, Voice and Swallowing Disorders.
Although we are unsure how we will be able to fund this evaluation and the possibility of continuing treatment, we feel it is absolutely in Jordan's best interest for us to provide her every opportunity for improvement. I have learned that Jordan's Neurodevelopmental Specialist (the one that oversees and prescribes her feeding treatments) does not approve of the VitalStim therapy and therefore, it is not available in the Grand Rapids area. This infuriates me!!!
Over the next few weeks I hope to be in contact with the National Foundation of Swallowing Disorders (the organization that put out the video) and the Cleveland Clinic and be on track with information and appointments moving us toward a treatment plan for Jordan. Please be in prayer that we are able to make the necessary contacts and find a way to afford this program.
On a brighter note, we also received notification yesterday that we were awarded the $1000 grant that we reapplied for!!!!! It will be available after the first of the year for us to use toward speech and OT at the Center for Childhood Development. I am so excited to have the opportunity to continue Jordan's treatment with her amazing therapist, Julie!!!!! We have seen more advancement in her speech in the past 6 weeks since she has been working with her than we have seen in quite a while. I love that she has taught me the PROMPT method of therapy (well, at least some of the cues...) and they are helping Jordan make sounds more clearly than ever before!! I am so excited to continue working with her!!
Well, that is all for now. It's Friday night...pizza and movie night!!!!!
