Christian had SB clinic on the 13th. Earlier in the week the clinic had called and asked us to be there at 9:00 and I told them it wasn't possible so they left our appointment at 10:00 am like I had scheduled. We arrived at 10:20 after a little delay in getting the older kids off to school. This seemed to work to our advantage because all of our appointments were waiting for us instead of us waiting for them.
We shuffled through physical therapy and nutrition. We were in this tiny little room with the PT and nutritionist (with one student). The physical therapist, Joy, said he looks great. She noticed how Christian's right leg turns outward and something about his toes. I still don't quite understand the toe thing, but Dr Morcuende has noticed it too. I have exercises for his toes and to help stretch his legs out. So basically it was an overview for Charlie and I with PT and nutrition because our pediatrician helps with feeding, etc and Heartland AEA PT comes out every other week and works with Christian.
Next we went back to the waiting room where I got a chance to feed Christian some lunch (it was about 11:30 or so). No sooner than Charlie went to the bathroom and Christian finished did we get called back again for medical. (This was FAST)
We went over everything with a student and then Dr O'Brien came in to talk with us and assess Christian. (UIHC is a teaching hospital so there are always lots of extra people, students, and helpers.) I got to ask the questions that I have been wanting to ask neuro for months but always forget at our appointments. I asked about tethered cord, arnold chiari and symptoms, constipation, his legs, the level of SB, functioning.
Dr O'Brien is a wealth of information and a specialist in SB. She is just awesome!
When she walked in, she started moving Christian's feet all around and just watching them. This was awesome for us because no one else has done this before. She said that he appears to be around S1-S2 with a little more function on the right side. He will probably need ankle braces to help stabalize him when he is walking. She said it will be soon as he is doing so well mobility wise. Christian will probably always have bladder and bowel issues and we may have problems with continence when the time comes. If Christian's cord was tethered when he was born the neuro surg would have fixed it. She also told us symptoms to look out for if the cord happens to tether. (those of which I cannot bring to my thoughts to type right now) When I asked about the Arnold Chiari malformation is when it got interesting. Dr O'Brien and the student said that they hadn't read anything about Christian having it in the surgeon's notes but, instead of just saying that and letting it go, she pulled up Christian's MRI records to check. Christian does have the Arnold Chiari malformation but it was worded all medical like so that is why we didn't know. We are guessing that the neuro surg told us this in medical terms and we didn't understand before. Dr O'Brien said that since Christian has mild symptoms with his breathing sounds and swallowing that they usually do NOT get any worse. It seems that his sucking his thumb after almost every bite MAY be to help him swallow, which can be caused form the AC. We are also wondering if the AC may be causing his "weazing". I really don't have a word for how he sounds. Almost like an old man who smoked his whole life excecpt NO ONE smokes around him.
We learned all of this in a 3 hour period and were happy with the information we received. It's almost as if we go to all of the other dr's then go see Dr O'Brien so she can interpret everything into SB related and explain it so much better so that we can understand.
On another note:
We went to the ENT for Christian on the 9th and the doctor found that Christian has swelling around his vocal cords and at the time had double ear infection. He was put on antibiotics for the infectio (we are done with them now) and prednisone to see if the swelling would go down. We follow up with the ENT in a month. Charlie and I are skeptical if the prednisone would help. Christian is still weasy after being off of the medication.
We also go to see a GI doctor in November about the weasing and spit up, swallowing, etc.
That's all for now.... I think.....
We shuffled through physical therapy and nutrition. We were in this tiny little room with the PT and nutritionist (with one student). The physical therapist, Joy, said he looks great. She noticed how Christian's right leg turns outward and something about his toes. I still don't quite understand the toe thing, but Dr Morcuende has noticed it too. I have exercises for his toes and to help stretch his legs out. So basically it was an overview for Charlie and I with PT and nutrition because our pediatrician helps with feeding, etc and Heartland AEA PT comes out every other week and works with Christian.
Next we went back to the waiting room where I got a chance to feed Christian some lunch (it was about 11:30 or so). No sooner than Charlie went to the bathroom and Christian finished did we get called back again for medical. (This was FAST)
We went over everything with a student and then Dr O'Brien came in to talk with us and assess Christian. (UIHC is a teaching hospital so there are always lots of extra people, students, and helpers.) I got to ask the questions that I have been wanting to ask neuro for months but always forget at our appointments. I asked about tethered cord, arnold chiari and symptoms, constipation, his legs, the level of SB, functioning.
Dr O'Brien is a wealth of information and a specialist in SB. She is just awesome!
When she walked in, she started moving Christian's feet all around and just watching them. This was awesome for us because no one else has done this before. She said that he appears to be around S1-S2 with a little more function on the right side. He will probably need ankle braces to help stabalize him when he is walking. She said it will be soon as he is doing so well mobility wise. Christian will probably always have bladder and bowel issues and we may have problems with continence when the time comes. If Christian's cord was tethered when he was born the neuro surg would have fixed it. She also told us symptoms to look out for if the cord happens to tether. (those of which I cannot bring to my thoughts to type right now) When I asked about the Arnold Chiari malformation is when it got interesting. Dr O'Brien and the student said that they hadn't read anything about Christian having it in the surgeon's notes but, instead of just saying that and letting it go, she pulled up Christian's MRI records to check. Christian does have the Arnold Chiari malformation but it was worded all medical like so that is why we didn't know. We are guessing that the neuro surg told us this in medical terms and we didn't understand before. Dr O'Brien said that since Christian has mild symptoms with his breathing sounds and swallowing that they usually do NOT get any worse. It seems that his sucking his thumb after almost every bite MAY be to help him swallow, which can be caused form the AC. We are also wondering if the AC may be causing his "weazing". I really don't have a word for how he sounds. Almost like an old man who smoked his whole life excecpt NO ONE smokes around him.
We learned all of this in a 3 hour period and were happy with the information we received. It's almost as if we go to all of the other dr's then go see Dr O'Brien so she can interpret everything into SB related and explain it so much better so that we can understand.
On another note:
We went to the ENT for Christian on the 9th and the doctor found that Christian has swelling around his vocal cords and at the time had double ear infection. He was put on antibiotics for the infectio (we are done with them now) and prednisone to see if the swelling would go down. We follow up with the ENT in a month. Charlie and I are skeptical if the prednisone would help. Christian is still weasy after being off of the medication.
We also go to see a GI doctor in November about the weasing and spit up, swallowing, etc.
That's all for now.... I think.....
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