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DECEMBER 02 - APRIL 03
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SUNDAY, 4/6/03

I realize that I'm recently finding the updates more difficult to maintain. I guess I just don't like giving any of the negatives I'm seeing any credence by putting them to paper. In any event, muscular weakening, either endemic or due to a loss of motor control, continues to progress with Stevie. I'm hopeful that this is a temporary setback caused by unknown circumstances. This thinking is not a pipe dream; the top geneticist at Baylor indicated we might expect fluctuating physical condition and abilities over time given the underlying mitochondria.

However, this weekend, SJ was unable to walk, it was an effort for him to sit upright, and even crawling gave him difficulty crawling as it was hard form him to maintain his head in an upright position for extended periods of time. It's hard to tell if gross and fine motor skills are deteriorating, too, or if weakness simply makes it appear so. Either way, the difference between now and the end of February, when his Grandpa Wasilik was here, is notable. It's not as a result of any complications with the dental surgery, as I saw the increased weakness before that was done. SJ seems to be aware that his mobility and general condition are not what they once were, and sometimes cries in frustration.

Still, we had much "quality" time together this weekend, with me just holding him most of the time. He'd been excited to see me when I went to pick him up at his grandma's house, flailing his arms in the air and grinning -- and waving "bye-bye" to indicate we should all get in my car and go. When I stepped outside for a minute to load some equipment into the car, he thought I was leaving without him and got very upset. It was nice both to quickly end his consternation by swooping him up in my arms, and to know that he really wanted to come visit his dad.

On another positive note, his mouth clearly isn't bothering him as it was, and he smiles much more often. I imagine he still has some tenderness from the surgery, but in another week or so that should be completely gone. Finally, I've had the flu or some sort of bug since Wednesday, so we were all concerned about me infecting him. Circumstances were such that I needed to take care of him, though, so I wore a surgical mask for the duration of his stay and washed my hands almost constantly. Hopefully he will steer clear of this particular bug. [Note the topmost three pictures in this text were posted today and are new (i.e., from this weekend.]

MONDAY, 3/31/03

Stevie continues to recover well. He had some respiratory congestion following the surgery -- unsurprising as this is common in gas-less anesthesia used for mitochondria patients. I will have him and his sister at my place for the weekend, so it will be a noisy, full and happy house. Unfortunately, Stevie's has not regained control of or strength in his lower body muscles and trunk following his last hospitalization, i.e., he has not really regained the ability to walk. Gross motor skills in the upper body also have some evident decline. The wheel chair, gladly set aside after he had surprised us once in the past, now gets regular use. Am considering dwelling and vehicle options as I may not be equipped to accomodate his increasing size and physical needs.

FRIDAY, 3/28/03

Stevie did pretty well with the surgery. There were some minor issues, but none that prevented him from being sent home following the procedure. He's home, sleeping and nursing some gaps in his grin. They filled lots of cavities, pulled two teeth, capped two and performed a pulpectomy. He'll be sore for a few days but, barring complications, will hopefully be a much happier little guy shortly.

WEDNESDAY, 3/12/03

Stevie passed his pre-surgery check easily, with Dr. Bolline saying he was as healthy as he'd seen him in a long time. His lungs were clear and he showed no signs of clonis in the doctor's office. Also, he's now about 25% taller and 10% heavier than the average child of his age -- no doubt attributable in large part to the feeding tube keeping him nourished through sickness and health. He still shows signs of fungal infection and his hair is slow to return. He was prescribed some more topical medication, at least for the patches of irritation that are not on his scalp. We'll need to communicate clearly with the dental surgeon and anesthetist regarding SJ's situation, as there are some key decisions to be make, i.e., whether or not he'll be under a general (our understanding) or whether they plan to intubate him during the procedure... and, of course, how long they plan to keep him. Fingers are crossed that he stays healthy for the next two weeks.

We put off some of his vaccinations that he would have had today just to make sure he didn't have some strange, adverse reaction that created a setback and, yet again, postponed surgery. All agreed he can get the mumps and measles shots once his mouth isn't full of exposed nerves. His sleeping schedule continues to be backwards, in turn creating sleep issues for his mom and grandma. Some adjusting of medicine doses has apparently been going on to try to moderate this, but without full communication of this to all parties -- and may have been creating issues due to erratic medication levels. I'm hopeful all are on the same page after today's appointment.




SUNDAY, 3/9/03

No new updates today... so Click Here for			...for photos taken around this date.

SATURDAY, 3/1/03

Went to Jay's home schooling class on Thursday. He had a good time playing the basic shape matching games -- although he seems somewhat distracted by my presence. Might have to try a mix of my being there and not -- as it's unclear if he does better or worse with Dad in the room. Fingers crossed against any setback that would prevent the dental work and, of course, some apprehension about the dental work itself. The surgery is on a Friday with an expected overnight stay. Given the doctors expect an overnight stay, I think a weekend stay is more realistic. They consistently underestimate the complications Stevie presents. No further updates until my return on 3/10.

WEDNESDAY, 2/26/03

Had Jay on Sunday, and he met his Grandpa Wasilik (his only grandfather whose whereabouts are known) for the first time. It was a neat day although, unfortunately, Jay was in quite a bit of pain from his dental problems. We administered a fair amount of analgesic, but I'd say he was having a more unpleasant day, oral-wise, than I'd yet seen. In spite of his pain, he took to Grandpa well, and they enjoyed each other's company. We took quite a few pictures, which I'll post shortly.

Went to Jay's home school session yesterday and he did very well and seemingly enjoyed it, too. The Ativan dose has been lowered a bit (although there appears to be some confusion on this issue at the moment), so he was more energetic, and his teeth weren't bothering him much. I pushed him to wave good-bye to the teacher this time, which he did; he is growing more accustomed to her so is more receptive. He's had so many strangers, both educational and medical in his life, poke and prod at him over the years that when the interaction isn't clearly 100% social he can be a little disinterested.

He's scheduled for his pre-op physical on March 12. If he passes that o.k. -- and unless something happens between now and then I'm assuming he will pass -- he'll have the dental surgery on March 28. I'm sure the post-phase will cause him some discomfort, but that will be short-lived, and I expect a "new" kid once his teeth aren't causing him constant pain.

Not to be redundant, but I would like to thank all of you who've written over the past few months with your words of encouragement, support and friendly hellos. All are greatly appreciated... and this business of e-mail (and, perhaps moreso, the ability via this site to negate the need of having to write these chronicals to everyone individually) has really enabled me to stay in far better touch with family and friends than would otherwise have been possible.

Finally, I'm out of town next week, so there may be a slightly more than one-week-plus hiatus in the updates. Will try to post one more update before I depart on Sunday.

WEDNESDAY, 2/19/03

Went to watch Jay work with his teacher yesterday. It started out disappointing. He seemed disinterested, unable to solve the puzzles, etc. Just not with it. He didn't even seem able to wave good-bye to the teacher -- something he does for almost everyone. As soon as the teacher left, however, his dazed look disappeared and he smiled an incredibly mischievous grin and began to laugh as he looked back and forth between his grandma and me. I haven't seen him laugh in ages -- and it was clear the laughter was because the teacher had left. He then began playing with the puzzles he'd acted baffled by moments before. I don't know if he just didn't like the teacher or if he was pulling some sort of passive-aggressive "fast one." Hard kid to figure.

On another note, Jay's grandfather, my natural dad, arrives this weekend for a brief visit. It's been 25 years since I last saw him, so I am glad Jay will have the opportunity to meet his only living granddad. Boy, a lot sure happens in 25 years...although I ruefully note that few advances in diaper changing technology have been made. Sure, the diapers are high tech, but the basic process is the same. I mean, jeeze, they've got that stuff you just sprinkle on carpet stains that makes them "magically" disappear, you'd think..... Well, anyway, speaking of time, Steven will turn five next month. Whew.

SATURDAY, 2/15/03

Have Jay and his sister, Jasmine,for the weekend. Have all his "stuff" in place at the apartment... loaded for bear, so to speak. He's not made much progress since he's been out of the hospital this time around... discouraging. Continue to await the dental treatment and enjoy him day to day. For better or worse, there is no more news either positive or negative, just the mundane details of the daily routines. Picture of him just below from today... and I finally took shots of all the mysterious equipment about the house to put pictures with odd words like BiPap and such. Stevie slept well last night. Was only able to keep his BiPap on him for a few hours, however, before he pulled it off. I lacked the coherence to get it back on worth a dang (I was half-dreaming that I needed to review all these thick, case studies before putting it on him!)... but he did o.k. without. I may need to deep suction his bronchial passages a littler later, but hopefully he'll just cough himself clear.

SATURDAY, 2/8/03

Met with the school district committee over the past few weeks in order to get Stevie qualified for and started with homebound schooling. His doctor feels keeping him isolated from other school kids is important right now (and I have to agree) as he is so susceptible to infection and is unable to fight off same once caught. Fortunately, he is assigned to a district where the local school offers some of the disability programs that others do not. So, he will now have a teacher come to his home three times a week, an hour and twenty minutes each visit, at least through the end of this school year when we'll need to go through the qualification process again from what I understand. In addition to the teacher, he'll get a monthly visit from a speech therapist as part of the routine. It doesn't sound like much, but it's what's available, certainly better than nothing and, frankly, probably in line with his energy levels and abilities right now.

I attended his first "class" and will be able to be there most days as he's scheduled for school around lunchtime. His teacher is nice and is in the process of discovering where his skill levels are as they have changed from when he was attending school last fall. I'm often asked about progress, a question that probably isn't in line with our world right now, at least in terms of what people generally mean by the word "progress." I consider progress for Jay today as avoiding respiratory illness or other infectious disease, keeping his clonus and seizures under control and retaining enough motor control to be able to play and amuse himself to some degree. That defined, he has made good progress these past few weeks, although he continues to have days with significant clonus. I'm not pleased about this as, at least over the past year, his clonus has generally subsided and disappeared within a few weeks discharge from the hospital. I'll have him for an overnight stay next weekend and am looking forward to it whether or not my lower back agrees!

SATURDAY, 1/25/03

Had Stevie today at my place. I live on the third floor of my apartment building and there is no elevator, so it is no mean trick getting him up here. He now weighs about 55 lbs., can't walk well enough or climb the stairs in order to get to my apartment, so must be carried. Of course, there are the large bags of medicine, feeding tubes and other paraphernalia that accompany him and he can't be left alone in either the apartment or the car. So, it is a serious weight lifting act on both arrival and departure.

I did enjoy having him so much, though. This was the first time he'd been well enough to come to my place since he got out of the hospital, so he had some as-of-yet unwrapped Christmas gifts waiting that I wanted him to have at my place. He loves to open packages and, of course, is amused by the toys for a very short period of time. When he tired of his gifts, we practiced walking, and I worked with him on using a cane. I don't think anyone had tried this, but he caught on fairly quickly and it did help him get around more upright. Still, he was prone to sudden, hard falls, so I quickly realized I still need to be pretty much right there to support him as he moves about. You need to be pretty much right there, anyway, even when he doesn't need support, as his mental faculties just aren't in line with his physical skills, at least when he's more mobile. Today, unlike before, he couldn't get around quickly enough to get himself in much trouble before I could intervene.

He napped for awhile, then I caught him crying in his sleep. I woke him in case it was a bad dream, but the tears persisted. He's a pretty doggone tough little guy, doesn't even flinch over I.V. needle insertion, blood draws or most other medical procedures as he's so used to them, almost never cries, really. So, I pay close attention when he does cry. Finally, some Ambesol to the mouth soothed him. It's difficult for me to look at his teeth as the untreated decay is so evidently advanced and, I assume, painful. March 28 and the dental work seems so far off, but Dr. Carter is the only in-hosptial, pediatric dental surgeon in Houston that knows how to deal with mito kids that must be put fully under, etc., so there really isn't much of an option.

I used to think it was my imagination, but he definitely gets upset and mad at me when I start to bundle him up to leave and when I drop him off at home. While this makes it all the more difficult to leave him, it at least tells me that he has a really good time when we're together...which means I've successfully done all I can hope to do.

WEDNESDAY, 1/22/03

Sat with Stevie on Tuesday and Wednesday. He was awake and alert both days and it was nice to interact with him for a change. He was doing quite a bit of walking, albeit with difficulty. His low tolerance for exercise also mandates we keep an eye on him lest he fall in mid stroll. He tends to lean forward so far that it disturbs his balance; it's impossible to tell if this is because his torso is weak, his neck is weak or he has some other issue. We did a bit of this "physical therapy," where I walked him about the room and did arm "exercises." Then I simply enjoyed holding him and he seemed comforted and comfortable to just rest quietly in my arms. The new photos posted here are recent, all post-December-hospitalization, and seem to have caught him in happy moments.

WEDNESDAY, 1/8/03

Sat with Stevie at lunch today so his grandma (maternal) could go to mass. His head is shaven to help with the healing of the fungal infection that caused big chunks of his hair to fall out. It was funny how different he looked with the bald approach. We played for about an hour, and when it was time for me to go, he held my arms around him and shook his head no. He clearly didn't want me to go, which made doing so more difficult than it is normally. His dental surgery (March 4) inches nearer. Closely watching how he's doing both from a recovery and respiratory standpoint. His rehab is going slowly with Stevie yet to begin crawling or walking much other than one isolated incident. His lungs are little changed from when he got out of the hospital. He still is not moving much air in the lower right lobe. He'll need to get a fully clean bill of health in a little less than a month (three weeks out from the surgery) or they will postpone. I'm hoping we can get it done and have no complications as his teeth obviously bother him a great deal.

SUNDAY, 1/5/03

We went to see Stevie Friday night so Grandma Ginny could bid him farewell. He wasn't quite as strong as he'd been on Wednesday, and did not walk. He did say "Daddy" in context, however, and enjoyed the toy (a little wooden board with various doors that could be opened to reveal 'surprise' magnets behind) Grandma had bought him very much. We played for quite some time and perhaps wore Stevie out as he appeared perhaps ready to nap as we departed. Ginny's back in South Dakota now and is missed by grandson and son alike.

WEDNESDAY, 1/1/03

We (Grandma Ginnny and I) sat with Stevie last night for a time. He had been pretty weak the prior day, particularly in the legs, and had difficulty sitting and could not stand. So, last night I'd set him on the edge of the sofa so he could dangle his legs and apply weight to his feet as he desired and was comfortable for him. He seemed to enjoy this and eventually began bouncing himself up and down with his legs. To our immense surprise, he then suddenly stood and, after a hesitation, took a few steps. They were very difficult, impaired and unbalanced steps, but unaided ones, so we were very impressed, and he seemed particularly pleased in his subdued fashion. Fun and exciting moment amidst the rest.

His teeth continue to bother him as does his lack of mobility -- after a couple of such step-taking ventures he was completely worn out and it was clear his legs hurt. We left him resting sweetly on the couch waving good-bye to us and playing with his new favorite toy, an Ever-ready handyman's flashlight. We're going to Galveston today and will spend a day or two down there dawdling on the beach and about town as it has been a long time since I've had a change of scenery. We'll see Stevie again on Friday before mom's Saturday return to the frigid side of the Mason-Dixon line. Took new picutres of Stevie and will post soon.

MONDAY, 12/30/02

Grandma Ginny and I went "Stevie" shopping this morning. Mom bought bunches of clothes, which he really needs as he's gotten so long (tall, if he were upright!). He has always shunned toys in favor of "real" things. He would rather play with a crescent wrench or a flashlight or a stereo than any toy you might buy him, and he's been this way for as long as I can remember. So, in addition to the clothes, we bought a flashlight, a little telescope and pair of binoculars, a camera, a watch and other "cheap but real" items. He won't really know what to do with them, but he'll know they're real and will therefore play with them for hours on end. He remains weak and immobile and continues to suffer from constant clonis (the seizure-like jerking I've described) on his right side. Most, including Grandma Ginny, did not believe he would ever walk again following his hospitalization in June. Somehow I knew he would, and he did, although in a very impaired way. I am less certain this time about the walking as the cumulative effects of the beating his body has taken this year are more evident than ever. Still, I'm determined to remain hopeful that he'll again surprise the experts and dilettantes alike, as some sort of mobility is so important to a curious child's happiness.

Kids, Stevie included, are amazingly resilient, but the undefined mitochondrial problems in his brain, nervous and respiratory systems make recuperation exponentially more difficult for him. The feeding tube helps enormously, as he gets all his nutrition. In fact, I don't believe he would have survived this bout had the g-tube not been in place. We (Grandma Ginny and me) are going to go visit him this afternoon and shower him with his gifts and, most importantly, all the kisses and hugs and love we can give him.

WEDNESDAY, 12/25/02 Christmas Day

Sat with Stevie while others went to midnight mass last night. Was with him about five hours. He has a consistent, jerking, clonis in his right arm and side that does not subside, waking or sleeping. It's like a sharp, brief contraction of the muscles every 3/4 of a second or so in very rhythmic fashion. It's most annoying for him and certainly makes sleeping difficult for him, not to mention handling objects, etc., with his right hand. The neurologists are at an utter loss as he is at his therapeutic levels for all meds and is receiving heavy doses of Ativan on top of this. He's had bouts of this before, but almost always during hospitalization, and was usually much improved on release. This bout presented post release. As there is no medical remedy available we're relying on hope and whatever faith we each might look to. Chest congestion continues neither improved nor worsened. He cannot yet sit on his own or, of course, stand or walk. Again, through it all he remains a sweet and smiling boy.

SATURDAY, 12/21/02

Chest x-rays showed little change from December 6. So, while he looks pretty good, he hasn't completely cleared out -- not a surprise. His medicine levels were all where they should be, which is a bit bothersome given the continued intermittent seizure activity. He's holding well with oxygen, in the high 90's most of the time. While he's had no further 'true' fevers, his body temperature does go up when clonis (shakiness and seizure like-tremors) onsets.

FRIDAY, 12/20/02

His grandmother and I took Stevie to TCH yesterday afternoon (definitely a two-person job!) for chest x-rays and some blood work. He was delighted to get out into the sunlight and to drive around. His eyes were as big a saucers at this seemingly small pleasure. Bought some items at a medical supply store and he was then worn out. We're still trying to get the seizing under control.


WEDNESDAY, 12/18/02

Saw Stevie at noon. His pediatrician put him back on Ativan for the seizures. He's back at 18ml a day -- where he was on the first day of weaning. . I think his pediatrician also felt the weaning had been far too rapid. Stevie is still having some seizures and pulmonary congestion. If his congestion worsens, we're to go back to the pediatrician immediately; if he gets worse on the seizure front we're to take him to the ER. I'm hopeful neither will be needed as we have him on the Robinal, now, which dries his secretions and, as noted, the Ativan for extra seizure protection. I finally got a good pediatric stethoscope and had one of the RT's give me a quick "driving" lesson. It's extremely helpful. I was able to tell that the lower lobe of his left lung remains collapsed to some degree, and administer Albuterol to try to get things going again. It also makes it much easier to determine when suctioning will help ease his breathing and when it will just aggravate him. Hard to tell sometimes just listing to his external breathing. He threw me big smiles and played with my watch (and, of course, stethoscope!). He was in pretty good spirits although in evident discomfort from his teeth, the congestion and the non-stop twitching of his arms and head that he's having to endure right now. Apparently the rental bills on all his support equipment have not been paid (or submitted to insurance for many months?) and the supply company was threatening to reposess. I'd feign surprise if I could. If it's just a few months, I'm sure I can bail us out.... but I'm afraid to find out how long it's been neglected.

TUESDAY, 12/17/02

Well, that was a rather short reprieve. On arriving home yesterday, Steven began to have seizures and to lose oxygen saturation. Could be many things... from the rapid descent from sedation (withdrawal) to the fact that he was on a special Robinal formula in the hospital to reduce secretions. While they prescribed this for us -- with instructions that he take it twice daily -- they neglected to tell us that it can't be readily found at pharmacies, and takes days to special order (and didn't send a temporary supply with us). He needs that med badly as it really helps dry out his lungs and nasal passages. His secretions and chest congestion have notably increased and he spiked a fever of 100.8 this morning. The battle now, of course, is to keep him from going back from whence he just came. The poor little guy must be so worn out. The rest of us are just trying to roll as best we can with each switch-back of the roller coaster ride. Hoping this is a one or two day "adjustment" setback.

MONDAY, 12/16/02

Stevie is home. While this is the absolute best of news, I also know from experience that this post-hospitalization period can be a surprisingly trying time, as the emotions of the past seven weeks will finally have a chance to overtake and become unmasked by the adrenaline that's been flowing. So, unless significant news develops, I'll sign off here for a few days for a little recuperation and to attempt to recall what I used to do with my life before I was making the nightly hospital runs. I'll pick up again shortly with updates on my little guy, having in the meantime received the best Christmas gift I could have wished for. 42 days. Wow. My thanks to everyone who voiced support... and thanks to those of you who may have simply silently offered same. --SWW