Growing

Parker is progressing this week and we are doing much better.



He has continued to strengthen and the physical therapist at Garches even remarked that this was not the same boy from a week ago and was much stronger. Even more notable, she said was that he had no spasticity AT ALL on Friday.



He certainly gets around. If you put him down. I left him on the floor of the front room and 2 minutes later came out to find him in the entry way. He doesn't crawl he just rolls across the floor which typically means his implant is left somewhere behind as the magnet has come off.



We don't know how much he is understanding but he has started responding to his name. He also in the past days has started making new sounds. the speech therapist is very pleasaed with this. She says we are to work on playing "peek-a-boo" with him as well as the 3 animal sounds "meow", "moo", and "quack" (or their french equivalents. He thinks this is hilarious & especially loves the signs we make with them. Parker has for the first time this week started waving to you as you pass him in the hallway in his walker, with a big-toothed grin. Renee and her sister Rachael took the twins to singing class and Parker was the happiest child while Penelope was the bossiest child in the class. Both seemed to really enjoy it.



We were expecting Dr. Quijano to encourage us to start him on another medication this week and we had been praying to know whether or not we should push back. We have been doing a lot of research into the medication and asking different doctors who were all generally supportive of the medication path and the medicine in question citing that it had been around for a very long time and there did not seem to be any long-term side effects. We were still unsure. We've also come to realize that it is not that uncommon for kids in these situations to be on 2 different anti-seizure meds, while he is still currently on one.



When we met with Dr. Quijano on Thursday she was less insistent and basically said that we should wait and see. They are going to schedule another EEG for next week and determine from there. Basically they describe his propensity for seizures as being very close to a cliff and the slightest abnormality (sickness, dehydration, fatigue) can push him over that cliff. The medicine helps one come farther away from that edge. They are also less concerned about small seizures and indicated that if they don't last for at least 20 minutes, it shouldn't cause any damage to the brain.



We didn't see much in terms of seizures for most of the week, although Friday night PJ did have what seemed to be a tick where he thrust his hands to the side three times in succession. This was repeated again on Saturday with both arms being spread wide twice. Sunday after church he did something similar. We reasoned that it was likely due to a combination of fatigue and dehydration and we would note this and discuss it with the Doctors Monday. Renee is visibly unsettled by this.



We are thankful to our Father in Heaven for giving us this week and have felt the prayers of our many friends, family and church community in particular this week-- more for us as we were better able to deal with the challenges better than the previous week.



There were some challenges though.



Renee has been trying to get the twins a spot in the same daycare that the three older girls all attended. It is just for one day a week but gives them a chance to interact with other children and also have a first experience with French. It is difficult to acquire a spot but given we have had our other children there and a dear friend of ours has her daughter there, we were relatively certain the twins would be accepted. This week they told us they had a spot for Penelope but were not equipped to deal with "special needs" children such as Parker. It is hard for us to face that reality.

Last night I was at a church activity and I watched as a father carried his daughter in his arms wondering how old she was... She was seven months old and I realized that I had a son who was 7 months once, a son who was special, but not "special needs". A son who could hear and move like a 7 month old should move. At 8 months it was different and scary. At 15 months it is still different but thankfully a lot less scary.

I have been thinking lately about that fact that we are almost to the time where Parker will have been deaf for more time in his life than he has been hearing. That memories of what it was like when we thought our greatest trial in life was having twins seem to be so distant it almost feels like we can't even imagine that we are those same people.

We keep working so that somehow we can get him to catch up with his sister, terrified that it won't happen, yet accepting it probably won't happen any time soon.

Though there have been challenges this week, we clearly felt a stronger sense of calmness and that we were ok, maybe even good. My guess is this likely has less to do with anything that we have done but more that people responded to the request to offer prayers on our behalf, and for that we are grateful and only hope that we can continue to feel this strength that is not our own.

Watching

Parker seems to be doing much better.



After a couple of days of anomalies with our little boy, we are somewhat re-assured but still waiting and hoping.



On Thursday Dr. Quijano read the results of the EEG from the previous day and became more concerned as it indicated that there seemed to be a series of mini-convulsions almost constantly that weren't manifesting in addition to the facial tick. The convulsions would stop when he would enter a "deep sleep" phase. At her request we took Parker to Garches to run a CT scan but showed no differences agaist what was already there two weeks prior. She also determined that he had an ear infection and started him on antibiotics.



Friday, Dr. Quijano organized for us to meet with Dr. Kossorotoff, the Neurologist at Necker. She examined him and looked at the EEG and scans. Dr. Kossorotoff believes that the increased brain anomolies may be due to the ear infection and that often this can be the case in children who have already had convulsions. She gave us two options, either add another medication to the current anti-convulsive, or we could wait, watch and see if the convulsions go away with the infection. We opted for the latter. We have a follow-up scheduled with her next Friday but we can cancel if things seem to right themselves between now and then.



I guess this is somewhat the new normal for us as I anticipate that every time Parker gets sick we are going to elevate it quickly. This is part due to the fact that with the meningitis we feel that we should have done something sooner but didn't recognize the seriousness of the situation.



The contrasting part for us is that Parker is still the happiest child we have ever had. His face lights up when we see him and he has a series of almost constant "happy" sounds.



We have also progressed on the "why" somewhat as we have been humbled again by the power of prayer and fasting.

Back to Real Life

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.

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?".