Parker is going through a series of new medications but seems to be continuing his physical progress.
Dr. Quijano sent us an e-mail on Sunday and indicated that given Parker's continued episodes we should start him on the new medication Urbanyl as soon as possible. We found an open pharmacy and started him that night. Meeting with them on Wednesday, they also changed the current anti-convulsive from Micropakine to Depakine which is the same family of medications, but in a liquid form, making it easier to administer three times per day rather than two. At Necker on Wednesday, Dr Quijano from Garches met & discussed with the head of the Neurology Department to determine what the treatment plan should be for Parker and whether there should be some additional medications. Friday they informed us that we should move him to a different drug called Tegretol, while slowly phasing out the other medications.
We are concerned that he is going through a large range of different medications in a short amount of time. Although, while he had a few episodes early in the week, the last part of the week they were mostly cleared up. Dr. Quijano is also keen on pointing out that the small episodes that he is having, while difficult to witness, shouldn't have a lasting impact on Parker's development and he could potentially grow out of them.
He also had cochlear mapping session (where they adjust the implant--or fine-tune this boy's "hearing") on Wednesday. Dr. Laccourreye informed us that there was significant ossification in the right (implanted) ear and that the electrode titled "one" was no-longer functioning within acceptable ranges. This may limit his ability to hear deeper sounds. She did reassure Renee, however, that in essence Parker could hear with only 10 of the normal 22 operating electrodes.
They also tracked down the particular form of meningitis that Parker had this week. The "Centre National des References Pneuomocoques" confirmed that this particular strain was not covered under the vaccination that he had (Prevenar), it is included in another pneumococcal vaccine which they give to older children. It has been suggested that we vaccinate our older children with this vaccine (Pneumo23) but it is currently out of stock in laboratories until further notice.
The reality is that he is progressing physically. Even seeing him every day we notice it. His fore-arm only body drag is fairly efficient and he will get up on his hands and knees. When we put him in his walker he has some directional control and can, to some exent, navigate our very narrow hallway. For months now, we have left him on the floor in a room and he would essentially stay close to his originally planted spot. Now upon returning, we find he has actually left the room & is searching for (mostly upright & female) playmates down the hall or in the entryway.
Dr. Quijano is very positive on his chance to progress and has been uncharacteristically clear that she would anticipate him to walk and function mostly normally cognitively and physically. She is also keen to remind us where we have come from. "Il est venu de loin" she said to Renee. This means, "He has come a long way".
He is a very energetic little boy and from the beginning the therapists have said that his engaged curiosity will make all the difference. We do see a clear sense of frustration from him not being able to do all that he would like to do and I think this is driving him forward. The occupational therapist reported today that Parker seemed much more focused, directed & steady in his movements. She made him arm crawl several times across the room. She congratulated Parker for making a formal "step" in therapy. Renee cried as she agreed he seems like a different boy. No longer a baby, but a boy, more serious, more sedated, but also more coordinated. Florence also added that she thinks Parker will be crawling in 3 weeks' time. When Renee reported to the girls at dinner this new & exciting news, Abby shouted, "Yes!' and Hannah said without hesitation, "That means God is hearing & answering our prayers..."
We were reminded of several things this week and some of them were emotional to experience. We were staying at the Marriott timeshare to the east of Paris which we have used as an escape to the countryside on occassions. When we checked in, Hannah got very sad and she mentioned last time we stayed there Parker could sit-up by himself, then she burst into tears. I realized that we hadn't stayed out there since the day Parker had gotten sick.
Abby & Renee also stayed up late the first night talking & crying & sharing their emotions about anger & pain & suffering & angels & faith & hope & heavenly things & "why". This is alot for anyone to process, not to mention a 7 year-old regarding her baby brother. Abby, when asked what she wanted for her upcoming birthday stated she would like Parker to be able to crawl for her baptism on November 1.
Axelle has a very on and off relationship with prayer; sometimes she refuses to pray and there are periods when she insists on saying all of the prayers. Currently she is in the latter mode and she always adds with her slight lisp,"Please bless Parker that he can walk, and talk, and crawl, and hear."
My personal desires are a little bit more varied on the subject. While I of course want him to walk and talk and crawl and hear, I have a hard time not projecting into the future and being more concerned that he will be able to do other things. I have found in a recent prayer I focused on him being able to succeed in school, to have good friends, to actively serve in our church and have the opportunities I had growing up. That one day he will have a meaningful career, find a wonderfully loving spouse, get married, have children. That I could guide him in avoiding some things that were hard for me and be a model that he could look up to but ultimately that I could help him be a better person than I am. At some point I realized in this prayer that all of this is what I wanted for all my children, and all of them would face their own set of challenges in achieving these goals and I thought of whether Parker's challenges would really cause that much of a barrier to achieving these.
Abby's goal of having Parker crawl in the the next few weeks until her baptism just may happen -- for Christmas I would like him to walk.
Axelle has a very on and off relationship with prayer; sometimes she refuses to pray and there are periods when she insists on saying all of the prayers. Currently she is in the latter mode and she always adds with her slight lisp,"Please bless Parker that he can walk, and talk, and crawl, and hear."
My personal desires are a little bit more varied on the subject. While I of course want him to walk and talk and crawl and hear, I have a hard time not projecting into the future and being more concerned that he will be able to do other things. I have found in a recent prayer I focused on him being able to succeed in school, to have good friends, to actively serve in our church and have the opportunities I had growing up. That one day he will have a meaningful career, find a wonderfully loving spouse, get married, have children. That I could guide him in avoiding some things that were hard for me and be a model that he could look up to but ultimately that I could help him be a better person than I am. At some point I realized in this prayer that all of this is what I wanted for all my children, and all of them would face their own set of challenges in achieving these goals and I thought of whether Parker's challenges would really cause that much of a barrier to achieving these.
Abby's goal of having Parker crawl in the the next few weeks until her baptism just may happen -- for Christmas I would like him to walk.
