Parker is back in Paris after a good break for everyone.
He continues to make progress in his movements and will roll around the floor until he positions himself to get what he wants. He is still progressing with sitting and can almost do a sit-up from a prone position. He also started doing some motions akin to crawling mainly using his arms.
When we left for the summer there was the looming question of the subdural liquid on the right side of the brain and the need to do another shunt. He had a CT scan on the first day we got back to town and we met with the neurosurgeon, Dr. Puget, the following day. It seems the size of the liquid pocket has not changed and more importantly the liquid is clear. Dr. Puget said this meant that we don't have another shunt surgery in the fall and we won't see her again until December.
We checked in on his cochlear implant with Dr. Laccourreye and Dr. Couloigner. Dr. Lacoureye was very excited as Parker seems to be responding at 60 decibels-- which means he can "hear" people at normal speech levels. The goal is for him to hear whispers at 30-40 decibels.
We also met with Dr. Quijano at Garches who assessed him to set up physical therapy. She expressed that he will most likely be able to walk although she is minorly concerned that it will potentially be spastic.
The second week back in Paris has been somewhat tougher. Parker started doing some irregular eye movements the first full Sunday back in Paris and was crying somewhat inconsolably. Talking to Dr Quijano she suggested that these might be minor seizures and we should watch them. When he repeated this again on Thursday, Renee took Parker back to Necker to have him checked out. The doctors were not overly concerned and mentioned that it might be that his anti-seizure medication might need to be re-dosed as he had put on some weight since the doses were first established. While it was somewhat reassuring that they did not think this serious enough to merit immediate hospitalization, we both realized that the anti-convulsive medicine we had hoped was more of a precaution, was really a necessity.
He continues to make progress in his movements and will roll around the floor until he positions himself to get what he wants. He is still progressing with sitting and can almost do a sit-up from a prone position. He also started doing some motions akin to crawling mainly using his arms.
When we left for the summer there was the looming question of the subdural liquid on the right side of the brain and the need to do another shunt. He had a CT scan on the first day we got back to town and we met with the neurosurgeon, Dr. Puget, the following day. It seems the size of the liquid pocket has not changed and more importantly the liquid is clear. Dr. Puget said this meant that we don't have another shunt surgery in the fall and we won't see her again until December.
We checked in on his cochlear implant with Dr. Laccourreye and Dr. Couloigner. Dr. Lacoureye was very excited as Parker seems to be responding at 60 decibels-- which means he can "hear" people at normal speech levels. The goal is for him to hear whispers at 30-40 decibels.
We also met with Dr. Quijano at Garches who assessed him to set up physical therapy. She expressed that he will most likely be able to walk although she is minorly concerned that it will potentially be spastic.
The second week back in Paris has been somewhat tougher. Parker started doing some irregular eye movements the first full Sunday back in Paris and was crying somewhat inconsolably. Talking to Dr Quijano she suggested that these might be minor seizures and we should watch them. When he repeated this again on Thursday, Renee took Parker back to Necker to have him checked out. The doctors were not overly concerned and mentioned that it might be that his anti-seizure medication might need to be re-dosed as he had put on some weight since the doses were first established. While it was somewhat reassuring that they did not think this serious enough to merit immediate hospitalization, we both realized that the anti-convulsive medicine we had hoped was more of a precaution, was really a necessity.
Yesterday we took him in for a vestibular exam to determine his balance ability. The results were not what we had hoped for in that his rotational vestibular balance is 0 and he will have to find all of his balance based on gravity. It is hard to tell what it all means for us but basically he will have to deal with being dizzy whenever he turns and there is a possibility that he will need to take medication to treat that as well.
At this stage it looks as if he will be spending 3 afternoons at Garches on Tuesday, Thursday and Friday for physical therapy. In addition they recommend he meet with the specialized speech therapist who works with implanted children another 2-3 times per week and the occupational therapist once a week as well.
We are struggling with all of this information. The summer we spent on vacation, reserving energy for the re-entry into therapy and doctors, seems a lifetime away and there is the deep longing that it would all just go away. There is a level of being on a break that is therapeutic but while the girls and I were anxious to get back to Paris, it has been harder than we could have anticipated. At some point we probably decided that we could just progress and move up from there --- this week we have been hit with the realization that maybe there will be other bad news that will come and our loathing for meningitis grows.
This past week & its news has also caused strain in our family relationship. I suppose we all deal with things differently but Renee has wanted to revisit the past and ask a lot of "if?" questions. I have avoided this as an unhelpful place to go and have wanted to focus on the question of "how do we deal with this?" going forward. Today, however, Parker has had a couple more mini-seizures and as I think of him suffering again, the question I have is "why?".
