This morning Jordan was evaluated at Mary Free Bed for her oral motor skills. Ellen Rosevear, her feeding therapist from last year, worked with her, making sure she was careful all of the quirky things that has made feeding Jordan such a challenge!!! During January's video swallow study, Rose used small bites of thickened Pediasure for the test, but Ellen decided to use pureed peaches to give her extra flavor and used small tastes given on a Nuk toothbrush. Jordan did well. She was sooooooo excited to eat!!!!! The biggest challenge was that she pooled the food in the back of her throat without swallowing it. It started to drip down and she eventually swallowed. There was only one time we believe she had a silent aspiration, but because we gave her such small amounts, it was not a lot (like in January). Ellen was very cautious and careful with thickness and quantity and stopped the study before Jordan had a chance to fatique.
This leads us to the beginning of feeding therapy (again!!)!!! We will start out with 2 times a week and see how that goes. I am able to start her on some tastes at home of pureed peaches 2-3 tastes/2 times a day. We are also going to chill the food so that the flavor and temperature are likely to provide Jordan the sensory input to swallow the food. I am also supposed to follow up the taste with a dry spoon to encourage swallowing. The biggest challenge to all of this is that Jordan is not satisfied with 2-3 small tastes and we may see lots of frustration when we stop feeding her!! That girl wants to eat sooooo badly, but we have to keep it to a minimum until we can get her to control her swallow. Ellen also noticed that Jordan still has difficulty controlling her spit. This is also something that we hope will improve as she begins oral/feeding therapy.
Finally, after discussing with Ellen the gastrointestinal difficulties Jordan has had since having the tube put in, Ellen thinks that she may have blown her nissen. This is the procedure she had done when the feeding tube was put in - they take the top portion of the stomach and wrap it around her esophogus, creating a one-way valve for food to go in but preventing burping, reflux, and vomiting. Over the past several months, Jordan has been sick several times with wretching and gagging and her food has even come up as though she was spitting up. Although not forceful, there are large quantities that indicate that the nissen has come undone. There are also times when Jordan burps or we can see/hear her reflux. This means we may put her back on reflux meds for now and see if it is necessary to re-do the nissen. The other option is a new tube called gj tube that would connect directly to her intestines rather than her stomach so the food can't go back up the espohogus. Hopefully, we won't have to go down that road again!!!
So now we start down the road of a VERY busy schedule!!! She will have oral/feeding therapy 2 times a week, she starts physical therapy soon probably once a week, she currently has the Early On therapist at our house once a week and group once a week (although many weeks off for the summer). We have many upcoming appointments as well - Jordan sees the hand surgeon, optholomogist, and her 2 yr check up. All of that is in addition to the appointments for the rest of us - dentist, orthodontist, optholomogist, pediatritian, etc....
Please pray that I am able to schedule all of the necessary appointments and I don't lose my sanity with the hectic and busy schedule. Also pray for us financially as the cost of childcare for all of these appointments will be increasing as well. Thank you, everyone for your support, encouragement, and prayers!! God has led us down this path for a reason, and we are just the tools he is using to help Jordan grow into the person He desires her to be.
Thursday, July 2, 2009
Genetics Test Results
Yesterday I received notification from the geneticist that Jordan's test results came back normal. We were looking for a microdeletion - a small portion of a chromosome that is missing or malformed. While this would seem to be a relief, it was actually very disappointing. We still have no answers for the many things that baffle us about this little girl. Primarily, why she is so small, yet proportionate, for her age. At this point, Dr. Toriello feels that we are back to square one with no other leads to syndromes or disorders. However, she, along with her other Dr.'s and therapists, still believe that there is something else going on with Jordan. She would like to have her evaluated again in a year or so and the genetics counselor, Sara, told us that there hopefully will be a new geneticist in Grand Rapids by next fall so if we can wait until then, it might be good to have her looked at with fresh eyes!! Please join us in continued prayer for additional diagnosis. We continue to view her as a gift from God, but also hope to be able to more fully understand what to anticipate for her future.
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