Sunday, August 28, 2011
Mikan's upper endoscopy went as well as it could have. If I counted correctly, I think this is Mikan's 10th surgery/procedure with anaesthesia.
Before they wheeled Mikan back, a nurse explained that one of the anaesthetic drugs they may use on Mikan they refer to as "the Michael Jackson drug" because it was the drug that killed him. Needless to say, this didn't settle us down. Too much information. Nurses, keep this to yourselves.
Everything appeared normal. His nissen is still intact, and he didn't have any narrowing in his esophagus. The doctor ordered some biopsies to test for food allergies and reflux. We will see the results in a week or two. So...we still don't know the root of Mikan's eating plateau. His GI doctor thinks it is most likely a hypersensitive pharynx and that he will grow out of it. I don't know what to think anymore. He exhibits symptoms of many problems and then none of them at the same time.
His GI doctor also told us that if Mikan's g-tube fell out, he didn't think we needed to replace it. We were pretty shocked by this since Mikan isn't eating ANY food, but since he is able to drink all of his calories, the doctor said the tube isn't serving the need it once was. We plan on discussing this with his developmental pediatrician and possibly another GI before we follow this plan.
This week we head down to Indy again for a developmental pediatrican appointment and a psychological evaluation. We are trying to sort out whether Mikan's delays are related to his a)cerebral palsy, b)his Retinopathy of Prematurity, c)his sensory processing disorder, d)a possible placement on the autism spectrum, or e)another condition we haven't heard of that someone will try to label him with. This evaluation will help us determine whether or not we have the proper treatment plan in place for him.
On a positive note, Mikan's vocabulary continues to improve. He is fascinated with the planets right now. He has labeled each room in our house as one of the planets. He sleeps on Mars, eats on Venus (drinks milk), plays on Saturn, and goes potty on Mercury.
Posted by John and Jenna Gensic at 1:22 PM
Friday, August 19, 2011
Mikan catching a sand wave
Diluting Mikan's high-calorie Pediasure seems to have helped curb his gagging. He still coughs on secretions and doesn't eat much of anything, but at least he has stopped the wretching. I took him to see a pediatric GI doc this week who said that the difficulty eating is probably one of three things:
1) a stricture (narrowing of the esophagus) that leads to discomfort swallowing
2) continual reflux because his nissen wrap has come loose
3) a hypersensitive pharynx which is common with children who have neurolgical impairments like cerebral palsy.
He thinks the most likely cause is the hypersensitive pharynx, which will only improve with therapy and time; however, we are taking him to get an upper endoscopy done next week to rule out the other two possibilities.
I have also heard that ataxia is closely associated with feeding difficulties, so we are looking into seeing his neurologist soon and possibly sending him to an intensive feeding therapy clinic to discuss how else we can provide a more successful feeding environment for him.
Coming up in the next few weeks is another appointment with his developmental pediatrician and the psychologist she works with who will evaluate whether Mikan's continued delays will place him somewhere on the Autism Spectrum. John and I are encouraged by his continued progress despite persistent delays and doubt any diagnosis will be in the moderate-severe range if he gets one. We are uncomfortable with labeling him this early, but if a label provides him with more services he needs, then we are open to it.
Today is Mikan's first day back at school. Pictures to come. Hopefully without tears.
Posted by John and Jenna Gensic at 9:15 AM
Wednesday, August 10, 2011
On Monday we visited Shriner's Hospital in Chicago. Mikan met with a physiatrist, physical therapist, and speech therapist. We were pleased that the physiatrist had the same opinion as the doctor he sees in Indy. Basically Mikan doesn't appear to have too much spasticity (a trait typical of most kids with cerebral palsy). His core and extremeties are also pretty strong. His main problem is coordinating his balance. This doctor said he wouldn't even diagnose his problem as spasticity but rather ataxia. Because of this less common form of cerebral palsy, he reccomended we come back in six months to see a neurologist who may be more familiar with the condition. But overall it was good news. He didn't think Mikan needed any Botox, medicine, or surgeries to help him walk. He just needs therapy and time.
Mikan's gagging still isn't controlled, so we are meeting with an allergist next month to have him tested. None of his therapists or doctors seem to know what is going on.
Mikan at his last horseback riding lesson of the summer.
We had the massive sycamore tree removed from our backyard. The tree company that removed it said that the trunk was completely hollow and that you could walk inside of it. We will miss the tree, but not the mess it made, nor the fear of being crushed during a storm.
Posted by John and Jenna Gensic at 10:32 AM
Wednesday, August 3, 2011
Mikan visited his physiatrist yesterday. Her evaulation was upbeat. She thought his trunk continued to strengthen. Last time she saw him in May he wasn't taking any steps on his own, so she was pleased to see his wobbling progress. She said he still exhibits plantarflexion (pointing of the toes) when he stands or holds someone's hand and walks without his AFOs. This means he is not quite ready for an AFO with a heel hinge that will give him ankle range to walk a little more naturally. Right now his feet are strapped into a 90 degree position to prevent the toe walking. She wants to give him about six more months to develop and then she will possibly reccomend an AFO switch. In the meantime she discontinued his derotation straps during the day and knee immobilizer at night for a trial period. If an awkward walking gait or any stiffness returns, we will go back to them. She also recommended a kind of stretchy tape that he would wear when his braces were off that is supposed to activate certain muscle groups that will encourage him to keep his balance better when he walks. She also wants water therapy to be a regular part of his treatment plan, since the resistance the water provides will provide proprioceptive input that helps his awareness of where his body is in space.
We also discovered at the doctor appointment that Mikan can write his name. We had seen him experiment with drawing a few letters, but he surprised us by grabbing a piece of chalk and writing it on his own.
Posted by John and Jenna Gensic at 8:32 PM