Parker is now 2 and is experiencing his second summer in the US.
A few days before leaving for the US, he had a blood test and an updated EEG to check whether the new anticonvulsive medication dosage levels were therapeutic and having the desired effect. Neither test was overly positive but he still does not seem to have had any repeat seizures.
He continues to work on finding his balance for walking and we continue to try and find new ways to stimulate that. Renee and I would walk him up and down the aisles of the airplane on the 11 hour flight to the US holding on to both hands then trying with just one. He did well with the walking part of this but constantly would stop to interact with some new neighbor or try and reach out for a cup or candy wrapper left on the floor.
We also received as a birthday gift from dear friends in Paris, a new device which is somewhat of a jump suit which has two straps to hold from above; almost like a puppetteer managing a marionette. When PJ is in it he feels that he has complete autonomy but you can support and direct as needed. Yesterday was the first day I had a chance to use this with him and for several steps he would walk with no support and my heart would leap as I thought "He's got it!". Then he would crumple towards the ground into a crawling position or veer to the left to try and pick up a cigarette butt or a flower. Renee said that he was doing better when we put a ball in front of him and he kicks it along to keep his concentration.
This week Renee has taken to a long piece of fabric passed under his arms, around his chest, and twisted behind his back. This allows for less aching backs while accompanying Parker on his walks, and seems to be equally beneficial for him.
We are also continuing to do some free walking between two people. I haven't seen significant progress here as he is still steady enough to make a few steps and then crashes to the ground or into the arms of the other person. He does seem to be doing better at the crashing as he is managing his fall with a little less brutality than the previous face-first dive to the ground. He now seems to bend his knees some and braces his fall with his hands. He almost always veers to the right when walking and when falling. He also is doing better about who he will do this exercise with. Previously it could only be between mom and dad and even sometimes he was not keen on leaving mom to go to dad. Yesterday he was going between Hannah and I and each time he would arrive at either of our arms he would turn around with a large toothy grin and give himself a well-deserved applause. Penel has identified this as an interesting and fun game as well and when Renee and I start to do this with Parker, she will sit on one of our knees and wait for her turn and then mimic the same motions as Parker including the falling into our arms and clapping.
His hearing is also progressing slowly. We have been better about using the traditional hearing aid for his left ear and he has been better about not pulling it out. just prior to leaving France, Renee visited Anne Keroudin, the audio prosthesis person. They tested the implant to make sure it was functioning correctly but also did an audio test with just the hearing aid on and he responded to some sound multiple times which Madame Keroudin took as a clear indication that there was effective stimulation to his left auditory nerve as well.
His implant continues to fulfill it's purpose when it is functioning properly. Perhaps a two year old puts a bit more wear and tear on the device but we seem to have recurrent problems making sure it is on. There are several sources of potential issues as there is the battery pack, the processor, two different cables, the external magnet and then, potentially, the implant itself which is under his skin and attached to his skull. This week Renee could not get it to turn on at all, and so Parker sat deaf and quiet for two days while I was travelling. I had picked up some spare parts while back in France and on Saturday morning I hooked him up with the newly re-functioning prosthesis. I was a bit concerned that it would be a shock to his system after so much time gone from the hearing world, but I started it out on the lowest setting and as soon as it made contact with his head, he started smiling. His sisters were there with me saying his name and smiling. And he started to laugh, deep from his belly. Renee cried softly in the next room, after days of intense prayer.
Peej also met with Annie Dumont, the speech therapist in France who pioneered working with profoundly deaf children. We had been recommended to her by several people as the expert on which school we should have him attend. We had also been getting some mixed messages concerning whether or not it made sense for us to continue to raise Parker in a bilingual environment; some suggesting our best option was to move to an English speaking country and others suggesting that we should only speak French in the home. Madame Dumont was very impressed with Parker's progress and said she was surprised at how he did compared to what she saw in the reports. She also told us the richness is his voice is due to the English we used in the home and that we should definitely not abandon that. Additionally, she saw no reason that we should abandon French either as it gave him an exposure to a wide spectrum of sounds which was more stimulating than a monolingual environment would provide. She also unwaveringly validated our choice of CEOP as a school, saying the other was not the appropriate environment for Parker to be in.
The principal reason for coming to the US this summer is to meet up with family and friends. As a child my most vivid memories are around summers spent at my maternal grandmothers house in Salt Lake City with my 18 first cousins from New York, Kansas and Utah or with my dad's sister Jackie and her five children on their farm in Layton, UT. I wanted to capture a part of that for our children so we planned on spending 3 weeks in Utah starting with Independence day weekend and ending with Pioneer day. If all goes to plan, we anticipate that all five of my siblings, all of their spouses and their 15 offspring plus my parents will be together for a couple of days around July 24th.
It has been interesting to see the interaction so far that the children have had in this vaguely familiar environment. The almost constant sunshine and blue skies, large houses and expansive stretches of marginally inhabited landscapes bordered by towering mountains stands in contrast to our life in Paris. The stimulation of being around so many children and so little structure has been a welcome change. It is also interesting to see how people have been reacting to Parker, and he to them. Yesterday while at the park I heard Abby defending why Parker had so many wires attached to him using very complicated terms (meningitis, cochlear implant) using tones which conveyed the sense that even she understood that he wasn't supposed to be like this.
Parker himself is working on what appropriate levels of social interaction are with his peers. He has recently taken to a recurrent game of stealing Penelope's pacifier whenever she walks by and then laughs at her indignant plea of " garker ginky!"; something he has re-created with his 2-year-old cousin Jackson with a similar reaction. Upon meeting his 5-month-old second cousin Brandon for the first time the only way he could determine to express his excitement was by laughing and hitting him.
Parker and Penelope are two now. Penelope can say every member of the family's name as well as several of the words and phrases. She has started to have some semblance of blond hair and is a bright, if not overly obedient child. She looks exactly like my baby pictures looked. She has taken to equal treatment demands recently and if Parker is getting carried, she wants to be carried as well and will lay down in loud protest wherever she is (parking lot, entryway, sidewalk, park) until her requirements are met. Longer term, more than any of the others I worry about how she will cope with Parker and his ongoing struggles.
We are now nearly 17 months post meningitis and some days we still struggle to cope with heavy questions as to why, when and how. On a trip to Manhattan last week I stole two hours away at the LDS temple near the Lincoln Center and found solace and reassurance in reflecting there. While Parker is not at the level he would have been had he not gotten meningitis, he has progressed physically and mentally past the level that he was before he got sick and that is an immense comfort. While we would welcome an increase in the trajectory of his progress, most days it is enough that the slope is up, even if that means it is uphill.
