If grace is an ocean, we’re all sinking

There are really no words to explain how blessed we are.  Sometimes I just have to sit down and literally get them down in print to see the "bigness" of it all. It's like how tiny Mason looks compared to how huge the beautiful tree is next to him at the hospital. Here is just the tip of the iceberg of why we are so, so overwhelmed with God's goodness this Thanksgiving season.

*PARENTS

I cannot think how it could be possible to be any more blessed than we are to have the parents we do. The ways that they have poured out love to us and what they have put up with to help us ... there is just no adequate way to say thank you. The meals you have prepared, the groceries bought, the laundry done, the hours of playing cars with Micah, the miles of wear on your cars (and the train) burning up the roads back and forth, and chauffeuring, the help with projects, the things you have learned to do for Mason, the stress you've endured, the risk you put yourself at just to come with all the illness constantly here, the selflessness and generosity of your whole lives toward us serving in any way you can... for all you have done and are always doing, and most of all for your hearts living out God's love in front of us...THANK YOU THANK YOU, we could never say it or show it enough but .. THANK YOU with every fiber of our being, we are so grateful for you and we LOVE YOU SO MUCH!!

*INFUSIONS

Happy boy playing with his steering wheel! Kicking it on and off by himself! :)

This month Mason started getting infusions where we literally pump a healthy person's antibodies into him for 78 minutes every Tuesday night so he hopefully won't get sick with severe infections so much. It has been wonderful for him to be off antibiotics! He is so much more content! He has started exploring SO much more with his hands and feet as if his nervous system is calming down some! The screaming rash attacks have been coming far less often since he hasn't been so stressed with sickness! He has had one cold type illness since we started him on them, and he sometimes seems somewhat weak or nauseous the next day after the infusion, but even the cold was SO much less severe than viruses in the past. It was like a "normal" baby cold if there is such a thing!! We are also blessed that at least right now, Mason does not seem to be upset at all by us having to poke him with a needle and tape it in for that long. And, the immune globulin infusions are unbelievably expensive but our insurance has covered them 100%! Thank You God!

*WEANING SEIZURE MEDS

We are down to 1.7 mLs of Keppra twice a day instead of 2 mLs 2x a day. Mason hasn't had any seizures since August even with the wean and he is now tolerating LOTS more oral stimulation without aversions. He isn't eating yet but this aversion issue to anything touching inside his mouth was something we had to work past before we could hope for good eating and ... he is so much closer!! We put a rubber baby finger toothbrush over a spinning child's toothbrush and he thinks it's hilarious to feel the buzzing in his mouth :)

*GAIT TRAINER

At Mason's last NICU follow up we told the PT assessing him that we were working toward trying to get insurance to help us buy Mason a gait trainer since he got so excited over a baby walker but was too tall to use it anymore. We were expecting a long wait before anything actually happened since such purchases can take months and might not even be covered. But...the next thing that happened just floored us. This amazing PT said to me, "I have one he can have that's just his size!!" HAVE?? As in, for free?? These things can be hundreds to thousands of dollars! And she was giving it to him to use for however long he needs it!! No waiting for insurance or funding to come through, no wondering if it will even be possible...here it is, to use and enjoy, already!! GOD IS SOOO GOOD, thank You Lord for putting us in the path of such a sweet spirit with a servant's heart! We are SO grateful!! This is what hope looks like... :D

 

 I could go on and on...but for the sake of my readers who know I get way long winded I'll leave it at this for now... thank You thank You thank You to a God who...

...Loves like a hurricane, I am a tree
Bending beneath the weight of His wind and mercy...

When all of a sudden
I am unaware of these afflictions eclipsed by glory
I realize just how beautiful you are
And how great your affections are for me

And oh, how He loves us so...

We are His portion, and He is our prize
Drawn to redemption by the grace in His eyes

If grace is an ocean, we’re all sinking...

So Heaven meets Earth like a sloppy, wet kiss
And my heart turns violently inside of my chest
I don’t have time to maintain these regrets
When I think about the way

He love us
Oh, how He loves us

How He loves us so

by David Crowder Band

http://www.youtube.com/watch?v=_n6EkKMTwHUhttp://www.youtube.com/watch?v=_n6EkKMTwHU

Presenting...

The Ice Cream Man, and an IGG Antibody (Immune Globulin G aka "I GET GERMS!")

Watch out germs, here comes one scary antibody to wipe you out! His tummy may look full but there's plenty room for more!! (We hope he's tagging for destruction all the ones we've been harassed by this month!!)

Don't even THINK about giving HIM any trouble...

Off duty...

Long tunnel...maybe a glimmer of light... :)

tAlthough the month-long Plague of 2011 is still going strong (I have ear infection, UTI and stomach bug, Brian had the chills and stomach trouble this week and Mason and MJ are not totally well from sinus/stomach ick) - there are signs we may be getting close (I hope!)

Mason is tolerating his feeds better and smiling a little more between. He is 2 lbs lighter but still doing his supported sitting and still a pro at tummy to back rolls - just getting tired quicker.

We had an immunology evaluation yesterday and it was determined he needs immune globulin replacement. This I dread in some ways (we have to be taught to do 2+ hour sessions of  Hizentra infusion shots over a pump weekly for undetermined period of time -this is a link that teaches us how). A nurse will help us get familiar with this at home. Please pray that there are no adverse events and that it does not distress Mason. Pray it does what we all are hoping - that it gives him a huge health boost both for his frequent illness and his nervous system issues. Pray for Micah to stay well too, as Mason's immunologist feels that although Micah responded well to his Pneumovax shot at one month check, he may very well have lost that protection since he has another sinus infection.

He also does feel that Mason's rash is probably "vasomotor instability" (autonomic/nervous system attacks) if not responsive to claritan (we'll give it a week on that). We will discuss this problem with neurology in 2 weeks.

Another thing I am checking into is to see if genetics can help us get him on anti-oxidants (especially NAC, N-acetyl-cysteine). I want to try that because he is missing the GGT6 gene (codes for enzyme that's important to glutathione homeostasis--this helps your body deal with stress and toxic damage/free radicals), so we are concerned he may not be able to handle oxidative stress from toxins as well as he should; since his worst crises seem to relate to medications (narcotics/seizure meds/sedation/antibiotics)  and illness we want him to have as much help on board as we can.  NAC can correct GGT deficiency, helps immune function and helps prevent free radical damage to nerves, builds connective tissue (we need all the help we can get with that too for loose joints and reflux issues) and may be helpful in cystinosis for whatever that's worth (the gene for which is extremely near to our deletion - although it's unlikely that's a problem it can cause need for extra hydration/thirst, photosensitivity (huge with both boys), thyroid, nerve and insulin issues (all issues in our family).

Thank you for praying us through this, it is pretty tough right now since we all feel bad and very exhausted but looking forward to some positive change coming soon!

PSALM 91

For such a time as this?

Our last post was about Mason's rash that he had gotten so bad after surgery, trying to figure out if he was allergic to something or what. We had doubts that it was allergic because he has it so often, almost daily, but it just gets worse under certain circumstances. The allergy doctor said we could try Claritan in case it's allergic (but it's not really hives, it is totally flat.) It's more like flushing or blotching all over. 

I strongly believe (although I'm just a mom not a doc) that the cause is related to his nervous system, not an allergic reaction. In other words, that he rash is the result of something called AUTONOMIC DYSFUNCTION. The ANS (autonomic nervous system) controls involuntary processes like saliva secretion, digestion, blood pressure, temperature, heart rate, vasoconstriction/dilation (blood vessel behavior), bladder release, etc. I think Mason is having autonomic crises whenever he is sick or stressed and here's why:

The slightest agitation is setting him off :( In this case, it is temp changes and/or sitting up.

Here are pictures of what kids look like who have this problem. CLICK HERE FOR PICS OF RASHES OF KIDS WITH AUTONOMIC DYSFUNCION It looks and sounds EXACTLY like what Mason deals with when we are in the ER with him screaming for no apparent reason and covered in these blotches. I think his autonomic nervous system is going haywire - his bp and temp are all over the board, he bradies or soars in heartrate, his rash is crazy, his guts are completely off/not tolerating feeds whatsoever, he does not regulate well (inconsolable crying), doesn't tolerate position changes, stops gaining weight, congested unlike anything you've ever seen, and his bladder seems like it fills to the size of a basketball before it empties causing him extreme distress and multiple times waking at night and having to redress him due to a soaked crib. Basically it comes across as anxiety to the 100th power. Here is what Mason continues to look like daily (and this has been a terribly stressful month for all of us, even after he recovered from the surgery a stomach bug/sinus infection/diarrhea virus have hit hard and the guys haven't all been able to shake it):

The question is, what is CAUSING the autonomic system to misfire? There are only a handful of known conditions that exist and cause this problem, and they are mostly metabolic diseases (mitochondrial disease like myopathies, Familial Dysautonomia (Riley-Day Syndrome) and other "hereditary sensory and autonomic neuropathies." 

None of these sound very encouraging to us, but obviously Mason doesn't have the classic version of whatever it is since it is likely caused by his deletion that is undescribed. However that deletion may very well cause a variant of one of these conditions (and I am praying hard that it is one of the milder forms, non-degenerative, as so many of these are progressive and makes me more nervous, from a human standpoint, than I have ever been with his health). Here is a story about a boy who has the degenerative type:

MEET ANDREW (click for the story)

Anyway, Andrew's story sounds very familiar as to what happens to him. Even I have dealt with some very minor autonomic dysfunction my whole life - in fact when I was in my early twenties and had a painful health event (endometriosis/ruptured cyst) I had a strikingly similar array of symptoms - my heart would race, I would have alternating very low or high bp, beet red/flushing so bad the docs thought I had lupus, I couldn't gain weight (this I thought was a wonderful fringe benefit), and I couldn't tolerate eating much due to the pain. I also would get so stressed during events like IVs that I would pass out and once had a tonic seizure (what Mason has). As a child I passed out while just standing up while my mom fixed my hair. All these were "vasomotor" or mini autonomic events but it was annoying more than anything else, and no one thought it meant anything was wrong, just that I was "super sensitive to the affects of adrenaline." 

Do you ever think you go through things for a reason? I think the reason for this entire experience was to help us connect the dots to Mason's nervous system issues that far surpass mine.  Post -surgery a similar cascade of symptoms happen to me until I hit a brick wall and my thyroid kicks my metabolism into lockdown and then I can't LOSE weight. Biscuit has his own array of nervous system meltdowns when he is sick or following an illness - he goes numb in weird places at the slightest pressure, he sweats like crazy and flushes at the slightest exertion, and his guts are all out of wack as well (reflux, diarrhea and constipation, GI pain).

One thing to consider is that although he may not be allergic to surgery anesthesia, he very well may be responding poorly to its effect on his nervous system. The effect on his nerves may be more lasting than just the duration of the surgery. We need to discuss this and consider a new anesthesia approach that uses a more appropriate drug used in such cases. We also want to contact his endocrinologist and see what his latest thyroid labs were. If they are significantly lower than the previous check (they never told me results), I may request to halve his Synthroid and see if it slows down his metabolism and improves the picture any. In me it tends to yo yo and is hard to keep at even levels. When I am hypOthyroid, I gain weight but feel better. When I am hypERthyroid I lose weight, I get migraines and the array of symptoms above. It may be in Mason's best interest to keep his TSH levels more on the moderate side than low, to see if it makes a difference. I may also ask about magnesium supplements (these help me significantly to avoid the stress/migraine effect) if either plays a role? Hydration is also extremely important for his bp etc.

Most of all we need to find a doctor who knows a ton about autonomic conditions and how to keep him stable through stressful times. One huge prayer request will be to be able to keep unneeded lines, wires and drugs out of him as these are what seem to lead to a downhill slide most often due to constant infection or side effects. Thanks for your prayers for guidance and direction, protection for Mason and healing. He is having a hard hard time of it right now with breathing (on frequent nebulizer treatments for wheezing, and Zpack for sinus infection).

We think the reason for the difference in his pupil size is the albuterol getting in his eyes (says it is a side effect). 

This is the happy little guy who is begging us to help him feel better so he can get back to being himself :D

"For if you remain silent at this time, relief and deliverance...will arise from another place, but you and your ... family will perish. And who knows but that you have come to your.... position for such a time as this?” Esther 4:14

We need some rash advice from nurse friends :)

n

So...we know several of you have medical experience ... any suggestions for what this type of rash could be? Mason has it A LOT, and it usually tends to be after a surgery and shows up worst when he is crying but sticks around for a long time in a much more minor appearance - weeks on end). Could this be related to morphine or another anesthesia med? (we've read it has an allergic like reaction sometimes and he's had it mildly off and on since his previous MRI intubation). His upper airway also narrows and he sounds awful (hoarse, wheezy) but we've been told this was just from intubation irritation. If it's more likely that this is an allergic type reaction we need to do something to find out what is causing it so we watch out for it next time but...do we need a dermatologist to determine it, talk to anesthesia, or just who? Our pediatrician says it's probably "flushing" but seems pretty extreme if it's just that. It does look like blotches of flat blushing - also behaves exactly like hives (comes and goes at random places) but has absolutely no whealing (no raised areas at all). Anyone who can point us to someone who may be able to help us out, would be great. We'll try to plan a dermatology consult but you know by the time someone can see us, he won't be having the issue at the time. Thanks!!

Surgery Update #2...

Mason is home, as of early afternoon!! :)

This is a HUGE praise, and another is that he did not have the level of stridor afterwards that he did last time (they pretreated with steroids this time). He only had to stay a couple hours in post op. Thank you for those prayers!

He is in a HEAP of pain, despite getting 2 doses of Fentanyl, one of morphine and Tylenol w/ codeine as often as allowed. He is also very hoarse and somewhat noisy breathing from the tube in his throat, just not quite as bad as last time. It has mostly been about keeping him comfortable today (not very successful yet though). We are praying tomorrow is much better. He is also covered in his blotchy "rash" very badly, worse than we've ever seen it. We still don't have good answers as to whether this is reaction to a med, or just his weird "flushing" episodes worse under stress (didn't start until he came home of course). Please pray that also improves, either way.

The surgery itself did not go exactly as planned (only got half the job done with his orchiopexy due to things not matching up with ultrasound expectations, needing to make judgment calls on what to do, etc) so that was hard news to hear. It means we have to do this again in a few months for the other side. But all went well as far as no other complications during the surgery itself.

Please continue to pray him through the night as he is pretty miserable at the moment. Thank you SO much for helping us through this day with your encouragement and prayers! Don't know how we'd survive without them.

Surgery Update #1...

Mason is still in surgery, but we have some news about the procedures so far.

1. He was sedated with gas and after a "few tries" got IV (we'll only know how many that is when he gets out)

2. His scope test showed nothing unusual (as for reasons why his Mickey buttons may be popping so often; the only explanation may be the size/shape of the balloon being too big for his stomach (which is smaller than average) so we will stick with the other type of balloon; if we continue to have trouble we could switch to a non balloon (we are hoping not to have to do this as it often requires surgery to change them, etc)

3. THE HEARING TEST: the results of the ABR are back, and somewhat surprising to us. He has mild to moderate hearing loss symmetrically in both ears, despite the ear tubes. One of the tubes seemed possibly clogged with wax so the ENT will have to check that, but the other looked clear, and was showing the same loss. This means that although Mason can hear, he may not be hearing well enough to learn language effectively and hear in a meaningful enough way given his vision impairment. They have referred us to three "schools for the deaf" in the area to get hearing aids for him through First Steps. Please pray for us as this is a whole new area that we have very little experience in (thankful for good friends like Katy T and others who have great knowledge in this area!!). We are hoping this support could potentially help him a lot with his development if the hearing aids and early intervention make a big difference for him. He really really wants to communicate and we want to help him any way we can!!

He is still out for his other procedure (not laparoscopic as I first thought it would be but just "small incisions"). They told us he very well may get Fentanyl before he wakes up so please especially pray as he nears the end of these that he will remain comfortable throughout his recovery without complications. Thank you for all the prayers already going up !! :D We love you all!!

Surgery Tomorrow...

 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.

Mason has surgery coming up tomorrow - we have to be there at 5:30 am, everything kicks off after 7:15.

He's slated to be out for 4.5 hours for a 1-hr hearing test/ABR, an upper GI scope (to see why his Mickey balloons on his feeding tube keep popping) and some scheduled laparoscopic stuff w/ urology. The length of time under is one of the biggest concerns. Here are some other prayer requests:

*that when he gets there tomorrow he is HEALTHY (no wheezing/congestion/fevers, etc) and they can actually do everything they have planned.
*that they are able to use gas first to put him out before they place the IV, and that they would not have trouble starting the IV (last time he had 15 holes from that and we hope not to do a repeat)
*that there are no complications during the surgery, especially no trouble from previous scar tissue that would make them have to convert to an open incision as opposed to laparoscopic, and that they wouldn't do any damage to his organs or his fundo as they explore with scope/tools, etc.
*that the results of all the procedures would be encouraging
*that he woudn't have any trouble waking up from the anesthesia or have bad side affects or be in much pain
*that he wouldn't get stridor from the intubation or infection from the steroids used to try to prevent it if they choose to use them
*that he wouldn't have any seizures from lower thresh-hold/stress, etc
*that he makes a smooth and uncomplicated recovery not requiring big pain meds just Tylenol/Advil, etc and that he wouldn't be set back in any of the awesome areas of progress he's made lately
*that it remains a same-day procedure and he gets to come home tomorrow (and stay home a LOOOONG time - this is his last "planned" surgery and we hope not to need anymore ... ever? we can hope, right! :)

I'm sure you can think of others too, these are the big ones on our minds at the moment :)

Thank you!! we will update asap.

Wordless Wednesday

Double Whammy (both the boys have it)

I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day. 2 Tim. 1:12

So we found out this month that Micah has it too.

By "it" I mean he also has the genetic deletion I carry and that is most likely the cause of Mason's syndrome.

 

No we don't know what it means exactly. Maybe nothing, if it turns out not to be the cause of Mason's issues. But even if it is the cause, and the problem lies in the varying number of cells in each of us (blood vs. brain vs. skin etc) that are affected by the deletion, and it adds yet another layer of uncertainty to our lives, this blog is about KNOWING. And we wanted to know.

We decided to have him tested for about a hundred reasons...

...knowing might help explain why his babyhood nearly killed us with his "normal" but unrelenting health problems (starting with unexplainable sepsis symptoms and days in the special care nursery after birth, constant viral sicknesses and ear infections, feeding issues, food allergies, soft spot closing at less than 6 mths, lack of sleep for 18 months, inability to leave him anywhere ever, etc)

...knowing might explain why he and Mason both have similar immune responses, a similar sacral dimple type area on lower back, very small adenoids, etc.

...might explain Micah's hypermobility, sensory issues and recently diagnosed hypotonia (low muscle tone) and developmental delays in fine and gross motor. (But he is actually advanced in language/cognitive so it definitely doesn't affect intelligence for him). I don't think it does in Mason either - he is quite a smarty pants :)

...knowing might explain why Micah never crawled except about a week (went right to walking - if babies do this, it's not the good thing that you might think- it actually leads to further developmental delay due to lack of upper body strength - they can't handle fine motor skills as well because hand movements for writing/drawing/coloring/self help skills are controlled by the arm/shoulders and have to be developed through crawling etc. Might also explain why he ALWAYS walked behind his stroller and pushed it as a toddler, wherever we went. We thought it was just cute how obsessed he was. But it was probably because he was using it as a walking aid to lean on :/ Never would've thought that at the time :(

He is getting PT/OT services weekly now to help him be able to do the everyday things other4 year old kids do with no trouble - swing on swings (he can't hold on long, his hands tire out), pedal his bike (he can't get the pedals around by himself yet for more than a few turns without getting tired), do monkey bars (won't even attempt), etc. His left side is actually a lot weaker (especially his leg/foot).

Here he is practicing on a trike. They have straps to help him keep feet on pedals and Miss Amy is helping him push his legs (they won't let me go in with him so I had to sneak a pic on my phone):

Anyway, kiddos who often sit like a "W" with knees under them and feet behind them, tire easily or seem "lazy" by leaning or laying down a lot, or walk "pronated" on the inside of ankles may have subtle hypotonia or developmental motor delays that benefit from PT. We are hoping it helps him a lot..

The OT should help him focus more on the hands / fine motor skills and help him get some strength/endurance for keeping up with schoolwork so his teacher doesn't have to help him do his in the future; his OT also helps him with listening therapy (since he makes loud noises nonstop in the car, etc) He has a blast at the "Big Gym" where he goes for the therapies - they have lots of fun stuff to play on. But they wear him out fast ;)

...knowing might help us gauge what sort of issues to watch out for with Mason if Micah gets similar issues to a milder degree. One example, is Micah goes numb all the time. His hands, feet, legs, etc. Over little things. If this is happening to Mason (and he can't tell us) ... we can keep our eyes open anyway for things that may make it worse (Micah can't sit in certain positions very long without numbness...prolonged numbness can cause nerve damage/weakness of extremities/limbs...so we are going to keep an eye on both of them about this.) And it helps us know what to not do with Micah (for example what meds or procedures may cause problems, based on issues seen with Mason, who's had difficult intubations consistently causing stridor (Micah always gets croup with viruses so seems likely it would happen for him too since they are similar processes but thankfully Micah has never had to be intubated.

Knowing also helps us praise God for the absolute miracle Micah is and always will be - that he is doing so remarkably well in spite of what "could have been." God is good and we praise for Him for His mercy, love and precious gift of these two boys.

 My mom gave me the new Matt Hammitt cd. It is WONDERFUL. Our favorite new songs are "Holding You" and "This is Grace."

http://www.youtube.com/watch?v=JCl9DSgw-JI

NICU reunion

Today was our first trip to the annual Cardinal Glennon NICU reunion. It was great, and it was especially nice seeing familiar faces without any procedures, pain or illness this time!!

Saying hi to our favorite neonatalogist :) Dr. Anderson... She has helped us out so many times! She also reminds us of our favorite nurse in the world...Aunt Candy :D (Mason did not really want to smile for this one...he has mixed emotions about all medical personnel in general ... can't imagine why ;)

Visiting with some of his sweet nurse friends too

Lots of fun things for the kiddos to do. Micah  liked the bubbles, face painting, balloon clown and music tent best

Despite forecast of rain, it was beautiful, hot and bright! So oops on forgetting the sunglasses...

Earlier this month we stopped in at the hospital to see Debbie, another favorite nurse, Lisa, and some others who took care of Mason during his stay. 

 Thank you to all the ones who have loved on Mason and helped him during some of his darkest days from August to November 2010! 

We appreciate you SO much!!

Here is the pic we left with the NICU staff to hang up in the unit to celebrate how far he's come -

It was the Best of Times, It was the Worst of Times...

Where do I even begin for this month? I'll start with the best stuff first...

MASON IS ONE!!!!!!!!!!!! 

 Of course, he had a Mickey Mouse party (who else?!) ..

 It's a pity he didn't get any presents.

Or that nobody had any fun at his party.

 He wasn't too convinced about the whole cake idea.

He got a rocking horse for tummy time (and his own lazy boy) for his birthday. He LOVES the fuzzy buzzy whinnying horse, especially it's flappy tail!

Naturally, he had his first pony ride...

 

He's had improvements in exploring objects with his hands this month...dry macaroni, wet rags, toys - all things he's been unwilling to touch much in the past!

And he's grown very tall this month. He was 31 1/4 at his well-baby checkup! As you can see, the walker came and went in about a week because he just is way too tall. But you can tell by the expression on his face how much he enjoys having a little control :D We can't wait to get him into something more his size that he can get around in....

 He has had so much progress in so little time!

The hard part has been that this month has been one of the hardest yet on him physically.

So many things happened at the end of July/beginning of August that sent things downhill....

1. he had an extra Prevnar shot to boost his immune response to strep/pneumoccocal (his leg where he got has been red and bumpy like this since he got it, over a month ago...). He has not had his 12-mo shots until we get some feedback on what is/isn't safe for him. He also got put on an antibiotic, Cefdinir, to be on "forever." Or until his immune function improves.

.

2. He had an MRI and the intubation caused stridor. The rest of that week he seemed unwell. He had a possible UTI but the docs are pretty sure the sample was just contaminated, so we didn't treat it.

3. As he got over the stridor, both boys got sick with a bad cold. Maybe 5th Disease due to the rash shown here. But maybe not. The rash might be something like hives from an allergy (no welts though) or a flushing disorder of some sort (he gets it worst when he's active/upset). Regardless, Mason ended up in an ambulance with respiratory distress the likes of which I haven't seen in him ever. He had secretions coming out everywhere. And blood. Nuff said. Scared is not even the word for how I was feeling that morning :( He was in the hospital Aug 5-7 trying to dry him out and get his oxygen saturations where they needed to be.

notice the bright "slapped cheek" look that was suspicious for 5th disease, along with the flat rash on limbs...

4. During all this he started having episodes of "spacing out". We called them "staring episodes" or "the frownies," because he frowns like this when he does them and clenches his fists/feet...

This is what happens during an episode (just very repetitious mouth motions):

 We were nervous these "frownies" were seizure related, and/or that he had an undiagnosed infection. We told neurology that we weren't sure what he was doing, but he was doing it a LOT. They ordered an EEG. And bumped up his Keppra in case he needed an adjustment for weight (hadn't had one in over 6 months, and he's grown quite a bit).

4. The day after the Keppra bump, he had a new kind of seizure. He lost all muscle tone and turned gray for 10 seconds or so. Very scary. He also had 2-3 of his classic seizures over the next week or two - the ones he hadn't had since April. His rash continued. The worst was the screaming that started. And didn't stop, for long stretches on end. He had an episode of screaming during the EEG. And throughout the next week, to the point of severe exhaustion for all. He had "the frownies" in the EEg too. It was an ordeal, to put it mildly.
The picture says it all ... I think we all looked about this way :(

We ended up back in the ER. He was not himself and he was screaming WAY too much. And having seizures. This only added to his misery but the docs assured us all his labs were "great" (the ones they were able to get back that night, including xray, ultrasound, CBC and urinalysis).

Two days later the ER called to say he had a UTI and we needed to put him on 3 mLs of nitrosomethingerother antiobiotic every 6 hours for 10 days (that's 12 mLs a DAY). Then urology and pediatrics called to tell us NOT to give him meds, because it was again, a "contaminated" sample most likely and not to listen to ER doc. Sigh.  And drs wonder why we have a hard time trusting them sometimes?

The EEG showed he was having seizure activity. No surprise there, we had seen it. BUT the good news and the surprise, was that "the frownies" were NOT seizure related! Brian and I asked to go back to his original dose of Keppra because the fact was that he had not had any NEW seizures until we'd agreed to the Keppra increase for the frownies (which weren't seizures!). And all the screaming had started after we increased it as well, not before. Just google "Kepprage." Both his pediatrician and ER docs agreed this medication is the #1 best guess as to his trouble :( They want us to "get all the junk out of his system and let's see what he can do!"

All this to say, as soon as his surgery is over in October, we want to go WAY DOWN on Keppra (and maybe off it altogether!!) He is on a very high dose (has been since he came home from NICU) and we cannot help but wonder how much of Mason's "syndrome" is actually being caused by this crazy med :( On its list of side effects are WEAKNESS (he has "severe hypotonia"), INCOORDINATION (hmm, like with swallowing/eating?? he ate his entire bottle right before he went on Keppra, after they forgot phenobarbital), irritability, immune deficiency ....ARRRRRRRRRRRGGG!! Are we detecting a theme here?? Needless to say I am heartsick about what this med may have done to him all this time (the simple fact is we have only seen Mason without seizure meds in his system for like 2 DAYS of his life. There's no proof he would even have seizures except under extreme stress off the meds. (And as I have mentioned, I have had a seizure too under severe stress but don't let ANYONE put me on seizure meds ever please, now that I see what they are capable of!!) Please, please please pray for us in the "going off" process starting next month, as withdrawing itself can cause more seizures, and his neurology may be very reluctant to help us :( But we truly want to see if he improves off this (and all) seizure medication.

Just since we have gone back to the old dose, his seizures have gone away (rash is still there) and I found him the other day having SCOOTED on his tummy completely off his blanket!!

Thank You Lord for revealing to us such a potentially HUGE piece of info and help us to be able to get our little guy back to himself very soon!! He has come so far... WHAT A YEAR!! :D

"The living, the living—they praise you, as I am doing today; parents tell their children about your faithfulness." Isaiah 38:19