Brief Update on Micah

Two weeks later and Micah continues to heal well! It really seems like longer ago than that to me. His stitches are beginning to dissolve and the healing of his incision is an occasionally itchy process. Again, though, Micah has been really good about not touching his head too much. What remains now is mostly for him to return to his usual stamina. Right now he lasts about 3-4 hours after waking either in the morning or after nap before begging to go to sleep again. We trust these periods will continue to increase in length. When he is awake, he has his usual amount of energy, it's just that he needs more sleep right now.

He is released to go to preschool again next week, so we'll do that Monday, Wednesday and Friday. If all goes well, we plan to have him return to daycare as well the following week. Until then, David and I continue to juggle child care at home while returning to work part time. We are grateful for understanding work environments!

And in other news...

We are expecting a baby in May, somewhere around the 26th. In the midst of all of the hubbub surrounding Micah's surgery, we have let some people, but not nearly everyone know this news. So, here it is in writing. A few months ago we were feeling disappointed that the surgery date was as far away as it was, but once we found out about this new little one coming, I was actually glad for the delay. It meant that by the day of surgery, I no longer felt so awful all the time. We are grateful for this gift and we all look forward to meeting Micah's brother or sister in a few months.

Returning to Blog Only

The reaction/rash on Micah's ear, cheek and forehead has receded considerably, so he's on the mend from that. Because we saw the surgeon on Wednesday, he said he felt comfortable with us not coming back for the traditional 2-week post-op appointment. Micah's incision was looking good, as he was just in general. We'll call in next week to report how the reaction is doing, as well as to get the pathology reports from the tissue they removed. They may have more information about what kind/class of malformation this was, as well as other information that might be helpful to know. In three months we will go back for an MRI and see the surgeon one more time. Until then, we will wait until the time seems right to have Micah go back to preschool and daycare. He still needs to have time to heal before that. 

This recovery time has gone so much more quickly than we had anticipated, and we are so grateful for that. We continue to be surrounded by many people who are finding ways to support us. 

But now the real period of waiting begins. This surgery, major as it was, is just a step on this journey. It was a "successful" surgery in the fact that Micah came through it fine, with no discernible deficits, and seems to be even improving in some of his skills. But we won't really know for at least 6 months (and even longer) whether it was ultimately successful in doing what we hope that is has--completely eliminating Micah's seizures. 

Because the seizures Micah has been having most recently are "subclinical", meaning we can't see them happening even though they are and even though they continue to impact his brain function, we won't know until his first EEG whether those have been eliminated. That EEG will happen in about 6 months, and will tell us part of the story. If that EEG shows no seizures, we hope to begin the process of reducing his seizure medicines. Even then, we'll likely only take one away, wait another year, and then try taking off the other one. So, our journey is not over, even if this surgery turns out to have been a success. If his EEG still shows seizures, we will have to think further about treatment options and medicines, though depending on the severity, we may still be able to reduce his med load somewhat. 

The area of his brain affected by this abnormality--the left frontal-orbital lobe--is notorious for "hiding" small/microscopic areas of malformation. The area they removed was several square centimeters. The surgeon and epileptologist believe they got all of it, but, again, we won't know for sure until we see the future EEGs. Though it is not a tumor, it can act like a tumor in the fact that even a few cells left can cause problems (not that anything will re-grow, but that those cells can still possibly cause seizures). 

We are hopeful. Micah is doing so well, and we feel we are already, just one week out, seeing improvements in his verbal skills, as well as general affect. He is off of all pain medication, including oral Tylenol and Motrin which, to me, seems just unbelievable! We still need to guard him from getting sick, as well as to get him to rest enough so that the healing process continues apace. 

We originally set up this Caring Bridge site to give surgical and recovery updates. Our plan now is to transition away from this site and back to the blog. So if you would like to continue following our journey, feel free to visit fisherfast.blogspot.com 

We thank all of you for your love and prayers!

Micah reads with Grandpa Fast one week post-surgery.

Catching up from Caring Bridge

From Monday: Resting and Playing

We're spending our first day home just hanging out and resting. We all napped 2-3 hours this morning, which is unheard of for all of us. We'll see if an afternoon nap happens, too. I don't think I realized quite how exhausted we all still are. 

We had blueberry pancakes for breakfast and then played and read for a while, and then Micah had his first shower/bath. We need to clean his wound every few days to make sure it doesn't get infected. He was not happy with that arrangement, but, again, it had nothing to do with his incision hurting and everything to do with wanting to go back to bed RIGHT NOW. 

We'll probably venture outside for a quick walk after a while, since it's such a nice day. 

From Tuesday: Catching up on Photos

Click on the following link for more images from the last two days of our stay in the hospital: Healing photos

You'll see the various stages of swelling that Micah had to endure, forcing first the left eye to close, and then sealing the right eye shut as well.

There are also photos of Dr. Alden, the neurosurgeon, and Dr. Nangia, Micah's epilepsy doctor.

From Wednesday: A Scare and a Resolution

We made an unexpected trip to Chicago yesterday because Micah woke yesterday morning with a very red, swollen left ear, with redness creeping into his cheek. He was also clearly bothered by it. When we called the surgeon, he was concerned enough to ask us to drive here so he could look at it. The worry was an infection related to the surgery which could be dangerous. After looking at it, though, he believes it is some kind of contact dermatitis--an allergic reaction to the tape used in the O.R. He took some photos of the affected area and sent them to the dermatology department. They consulted and agreed that it was a nasty reaction and prescribed a topical steroid. We arrived back home about 8pm, exhausted after missing our naps and a very interrupted night on Tuesday. We are so grateful it is not more serious and glad they didn't need to keep us there for observation. So many things to be thankful for on this day!

Back in our own beds

Well, we are home! Micah had another good night last night and was able to function well and tolerate the pain (he didn't complain of any) with only oral medicine today--Tylenol alternated with Motrin every three hours, both at pretty high doses. We gave him a dose of Motrin just before he went to sleep in his own bed. He was very glad to be home, and so are we. 

Now we continue the recovery at home. Micah needs to rest adequately and take it easy, but in general he can now do much of what he could before, and will work up to being a normal kid again before we know it. He is up and around, and was going a bit stir-crazy in the hospital room at times today. We took him for several walks and rides around the hospital to bide our time. 

We asked the surgeon about future restrictions on sports (specifically football or soccer) or other activities, but there won't be any, at least not medically (mom might still say no to football...). Mostly we have to make sure he doesn't fall and hurt his head for a while. 

We are so thankful for being able to come home so soon, for healing for Micah and for safety through a delicate surgery. He still has a ways to go in healing, and he still has swelling in his head and neck, which should go away over the next few weeks. And, of course, there is the large wound on his head. Although I am realizing that I don't even really notice it regularly any more. Today I was wiping off his face after a meal and without thinking, just put my other hand on his head to steady it. I felt the bump of the incision and quickly let go, worried that I would hurt him. He didn't even notice. He was way more upset about the indignity of having his face wiped! 

Seeing those baby blues again

Until about five hours ago, I couldn't imagine going home, well, ever, let alone in the next day or two. But I think that this can actually happen. About five hours ago, Micah's severe (but normal for his procedure) swelling began to subside. This evening we could actually see both of his eyes! There were several hours today where he couldn't see anything at all because of the swelling, and he looked more like Charlie Brown than himself. Perhaps because of not being able to see, and probably as a result of not getting the stronger pain medication this morning he had a rough afternoon. Some rocking, some Toradol, several rides in the wagon around the floor with grandmas and grandpas, and going up and down in the elevators, stopping at all the floors helped tremendously (no, they weren't annoying other people--Saturdays are QUIET around here).

We have been grateful to have both our sets of parents here in Chicago with us during this time. They have gotten us food, stayed with Micah so we could get out of the room for a bit, and have helped cheer Micah (and us) up. Thanks, Moms and Dads!

So, we anticipate that we may go home tomorrow (if not, then Monday). It is not certain, but it looks like that's where things are headed. My biggest stipulations for feeling comfortable going home were that I wanted to see the peak of the swelling while we were here and that I felt comfortable with his pain control plan. I think I'm there. Unless he swells overnight again, it seems like we have passed the peak--right about 48 hours after Micah's surgery finished, just like the surgeon said. I'm glad he knows what he's talking about! ! Micah still looks like he's been through the mill, but it is so nice to see his eyes, and even nicer that he can see, period. 

His MRI of last night looked good, and his wound is beginning to heal a bit, it seems to me. We can bathe him, including his head, tomorrow or Monday. And if I haven't said it enough, this kid is amazing. Through all the poking and prodding and hooking up to monitors, and taking vital signs as all hours of the night, he has been mostly cheerful or at least forbearing! We are all ready to go home, I think, and be in our own space, where we time our meals, our waking and sleeping, our medicines, and control our noise levels. The staff here is great, and having our own room for Micah has helped make this bearable. but 515 Prospect is calling our names!

Photos, before and after

To see some photos of Micah before and after surgery (both featuring the classic, ill-fitting hospital gown), head to http://www.caringbridge.org/visit/micahfast/journal

A good day and a rough spot

Micah had another good day today! He went on a long walk around the floor with a full entourage of parents and grandparents. I was the IV tower toter, a much more difficult job than you would think. He was talking normally, though not as much. His memory and verbal skills seem to be perfectly fine. His pain seems to be minimal. He even got the giggles when playing games with grandma and daddy! The big downside is swelling. After having very little yesterday and this morning, the left side of his face quickly swelled to the point of his left eye being completely closed. He looks like two different kids depending on which side you see him from. From the right he looks mostly normal, from the left he is very, very puffy. This is completely expected with the surgery he had, and also because he has been on IV fluids for more than 36 hours. When the surgeon came in the second time today he said, "Oh, that swelling is not too bad. It will still get worse probably till tomorrow." This is turning out to be true. I noticed how fast it was happening when I went to lunch for about a half hour and came back and he looked completely different--that's how quickly it was happening. 

We waited all day long for him to have his MRI, and it finally happened about 6:30 tonight. So, except for two hours today when he could have clear fluids, he has had nothing to eat or drink for more than 48 hours. We were swabbing his lips and tongue with a sponge on a stick dipped in water to relieve his dry mouth and lips. He was such a trooper, though. I am continually amazed at his flexibility and calm, even when he asks repeatedly for food and all we were able to day is, "maybe later." What a sweet child he has been, throughout this time so far.

He said he wanted to go home today, too, which is good. Though I think it is unlikely we will go home tomorrow since he will be on only clear fluids at least until tomorrow morning. There are a lot of things that need to happen before we think of actually leaving. 

He also had the roughest patch we've seen this evening. His pain medication dose was delayed because of the MRI and so we think he was uncomfortable, as well as extremely tired, which made him sad and weepy. He also just came out of general anesthesia from the MRI again, so that could also play a role. Once the meds got into his system, he was able to calm down and fall asleep peacefully.

That's how I left him at the hospital. David is there overnight again while I am at the RMH nearby. I hope they both get some sleep tonight. Vitals only every 2 hours instead of every 4!

The morning after

Micah is up and watching Backyardigans. He can finally have something to drink for the next 45 minutes. Last night he couldn't have anything because his digestive system hadn't woken up enough. This morning he couldn't have anything because he will be put under again for an MRI at around 12:30, so he has a small window of being able to have something. He doesn't seem to have much if any pain, and he's only on Tylenol right now. The swelling on the left side of his face is definitely more pronounced than it was last night, and the surgeon who looked at him his morning said it will probably get worse before getting better. We are thrilled with how well he seems to be doing. Physically he is ok, and he is talking well, is engaging with us and acting somewhat normally (minus a lot of his energy). But he's clearly Micah. David even thought he got a little smile out of him today. We're sure to see more as he feels better.

He somehow wheedled his very own stethoscope out of the night nurse while David was sleeping, so he'll now have one to take home.

We give thanks to God for safety for Micah and for the skills of the doctors and nurses who care for him.

We hope he rests well today and tonight, and we all look forward to him being able to eat again!

End of a long day

It has been a long, exhausting day for all of us. Micah had several periods of being awake this evening, but seems to be sleeping again for the night. David is staying with him at the hospital and I am at the Ronald McDonald house tonight. Micah has been talking a little bit, mostly to say, "I want water", but also answering yes and no appropriately to questions and a few other things. He looks much better than we had feared he might, with just a bit of swelling on the side of his head, but he still has an angry 8-10 inch wound beginning at his left ear and snaking across his scalp at the hairline. There is no bandage on it, and won't be, just a lot of antibacterial goop. 

He had a ventrical MRI tonight, which was a short test to make sure his ventricles are doing alright in his brain. He will have a longer, whole-brain MRI tomorrow sometime, which is normal post-op procedure. 

Thank you so much for the many ways you are caring for us--balloons, prayer shawls, care packages, cards, notes, emails, texts, visits and whatever else I'm leaving out. I am grateful this piece of our journey is over, but we know that some things are just beginning. Seeing him looking so good, and other than being extremely groggy (who wouldn't be after 5+ hours of ansethesia??), listening to our surgeon and epilepsy doctor's reports and hearing him talk again, when they removed tissue (about 1 square inch or so) so close to areas governing speech, we feel hopeful that this surgery has helped him.

Time to sleep.

Micah is out of surgery and doing well

Micah is out of surgery and he seems to be doing fine. He's busy napping right now and looks better than I expected.

The neurosurgeon and Micah's epilepsy doctor said that the surgery went well. His neurosurgeon, Dr. Alden, even described the surgery as "kind of boring." We'll take that.

And now we wait

After an early morning--Micah had to have his medicine before 5:30am--we arrived at the hospital. He was able to see my parents briefly when they arrived to wait with us--they and he were so glad about that. David's parents arrive this afternoon.

We then spent about 3 hours in the "holding room" waiting for the MRI to happen. We had a stream of people coming in to talk with us during that time, from surgery, MRI, anesthesia, epilepsy, and lab. Micah did so well! He couldn't have anything to eat or drink, and asked about every 10 or 15 minutes for some food or snack (french fries!), but he didn't fuss when we kept telling him that we needed to have empty tummies for the medicine he was going to get. He was cheerful and playful, and occupied with his favorite medical supply--a stethoscope. We watched some PBS kids TV and he took a nap on David's lap.

We said goodbye to him about a half hour ago. He walked with the anesthesiologist down to get the gas mask before they would stick him with the real IVs. He looked so brave and seemed only a bit perplexed when he turned around to look back at us.

And so now we wait. It will be 4-6 hours before the surgery is over. We'll be getting updates, but not as frequently as I will want, I'm sure!

We pray for safety for Micah, skilled hands for the surgeons and calm for us.

It's almost time

We've been working up to this brain surgery for almost a year now. I still remember Melissa answering a call from Dr. Nangia while our family was driving to my parents home in Virginia. Dr. Nangia informed us that Micah's latest MRI showed a brain abnormality. In a way, this was actually good news, because we had never really known why Micah was having seizures. This might finally lead to a definitive diagnosis.

Since getting that call, we've been working to match up the origins of Micah's seizures with this abnormality, with the hope that everything would align for potential surgery. The tests have very solidly shown the seizures coming from this abnormality, so a surgery was scheduled and now it is just days away.

-David

Let's stay healthy!

We are waiting for this surgery on Thursday with great anticipation, and our prayer now is that Micah, and we, stay healthy until then. If Micah gets even a cold, it will likely delay the surgery (for who knows how long), so we hope his strong immune system can fight off anything it encounters in the next few days.

Seeing a TV ad and thinking, "That's me"

Last night I had an odd experience. We were (just like many of you) watching election night news coverage when a commercial came on. And I was absolutely transfixed. It was not flashy, and until the end, I had no idea what it was for. It depicted a mother with her child, who looked to be about 3 or 4. Over the course of the 30 seconds or minute, it was clear that though this child looked mostly normal, he had developmental issues. The only part of the voice-over I caught was her talking about him being in the NICU. It showed them going about their day, and in this tiny glimpse into their life I saw myself and Micah. It beautifully portrayed the joy and pain of having a child with special needs. From age-typical cuddles, and reading and playing to the frustration of having your child do something that most children much younger know not to do, like pour their drink out onto the table.

So much energy and attention goes into being Micah's parents; he still requires a lot of guidance and supervision at an age when many children are becoming pretty independent. Sometimes I don't even realize how much focus and energy it takes to be needed every minute until my tank runs dry. And I know that parenting any child takes a lot of energy, but I saw the look on that mom's face in the commercial as she held her board-stiff, screaming child under her arms while she tried to wash his hair in the sink and then tried to brush his teeth, and it was my face during yet another battle over something that seems like it should be simple by now.

I have been thinking about this commercial ever since, so this morning I decided to look it up. It is for MassMutual, and stars an actress and her son. But this was not acting; this is their life. The camera apparently just followed them around for a period of time, filming life as they live it.  I appreciated how it didn't sensationalize the difficulties her son faces, showing the many ways he is just a typical kid, while at the same time not glossing over the challenges that parents of special needs children face. If you'd like to see this spot, you can find it here.

Preparation and (blood) Donation

The time nears. We're down to a week and a half before The Day. Some of you have asked how we are preparing ourselves or how we are preparing Micah. Life is full of getting things done right now in preparation for both of us being gone from our jobs for a period of time. Mentally and emotionally, I'm trying to do the best I can to both not focus on this all the time while at the same time giving myself enough time to just be, so that I do have time to process. There are times of high anxiety for me, for sure. But we feel upheld in prayer and know that we are surrounded by God's love and yours. We're trying to find time to have fun as a family, to make time for lots of cuddles and play. We haven't told Micah much about what is coming. Partly that is because of his age and developmental level--time to him doesn't mean much. What does two weeks mean when even tonight's supper is FOREVER away in his opinion. As we get closer, though, we will be talking with him more about what will happen. The other part is that, while we want to be honest, we don't want to scare him. He understands about going to the hospital, and so we'll build on that. And mainly we'll reassure him that we will both be right there with him and will take care of him. That's pretty much it, for now.

Many of you have also asked if there are ways you can help. Right now we are set, though the time will come when we may need help in various ways. We don't have appointments to go to since all our consultations and testing are already done. Micah will have an MRI the morning of the surgery, but other than that, we're just waiting for the day. One general way you can help is by donating blood, wherever you are. We tried very hard to do directed blood donation for this surgery, but because of us being in a different state from the hospital where the surgery will be, it was not able to happen. In spite of this, there will be two units of blood waiting in the OR during Micah's surgery if he needs it (it's unlikely, but they have to have it there as a precaution), thanks to other generous, anonymous donors. So, for Micah and for other people like him, donate blood if you can. 

November 15

We have a date. Micah's surgery to remove the abnormality in his brain will happen in Chicago on Thursday, November 15. We met with the surgeon two weeks ago and felt very good about him. He answered all our questions and described both the procedure in the OR and what we can expect afterward. It's not going to be easy (hearing what they'll actually do to him was not fun), but both the surgeon and the epilepsy doctor are very confident and positive about his chances of seizure freedom following surgery. It's not a guarantee, by any means, but we feel it is definitely worth a try. We'll continue to post updates as the time nears.

The go-ahead

We had a good, if long, day in Chicago seeing both the neurosurgeon who will perform Micah's surgery and our epilepsy doctor. We ended up being at the hospital for almost 6 hours due to our first appointment being delayed for more than two hours, and needing to do some lab work before we left.

We were impressed with the surgeon, Dr Alden, and will go ahead with the surgery. He needs to consult with our epilepsy doctor to schedule a time for surgery, because she will also be in the OR while he performs the operation. We may know the date by Friday, but need to wait to hear from the surgeon's office.

Neurosurgery consult

We learned last week that Micah is officially a candidate for surgery. He was presented at the Neurology Conference by our epileptologist, and her fellow doctors agreed that he is a good candidate for removal of the malformed part of his brain, to (we hope) stop his seizures for good.

This coming Wednesday, September 19, we will travel to Chicago to meet with the pediatric neurosurgeon as well as our epileptologist. At these two appointments we will learn more specifics about the procedure, risks, benefits, recovery, etc., as well as having a chance to ask whatever questions we have. Following these appointments we anticipate that the surgery will be scheduled. We have no idea what the time-frame for that will be, whether the next week or longer down the road. Because it didn't take terribly long to get in to see the surgeon, I expect the wait won't be extensive. Unless we have more trouble with the insurance company dragging its feet.

We continue to covet prayers for peace of mind and wisdom.

MEG. Check. A little bit more waiting. Check.

Well, since my last post our appointment for the long-awaited MEG scan was moved up (yay). In fact, it was Monday, August 13. We were able to get in sooner thanks to our pediatrician who came in early on his first day back from vacation to do the physical we needed for Micah to be able to receive oral sedation for the test (he had to stay perfectly still for an hour or more which, unless he is sleeping is, well, impossible). Thanks to our friend Mary, too, who is also a pediatrician and offered to do the physical if we couldn't get in to our doctor's office.

He had to be sleep-deprived and couldn't have anything to eat that morning. So he was tired, hungry, and thirsty for the three hour trip. Yet he was so patient most of the time! I tell you, he's more whiny and impatient from 4-5:30 on the average afternoon (also known as when we're cooking supper) than he was the whole day of the test. What a trooper!

We got in right away, and had a brief consultation with various nurses, after which we went to the MEG center proper. There he was given the oral sedation. No one manufactures a children's liquid of this medicine any more, so he had to have it squeezed out of capsules into a tiny bite of applesauce. It smelled terrible, and  I am pretty sure from his response that it tasted about as bad as it smelled. We finally got it in, though. It's not the first time we've had to get bitter/disgusting medicine into him with minimal help (nothing could be as bad as keto diet and antibiotics). They hooked him up to 24 EEG leads for the simultaneous testing.

Here the tech is wiring him up. He's a little out of it but not sleeping yet.

This was more high-tech than the usual EEG, though, because they did a GPS of where the electrodes were on his head, so if he moved, they could re-calibrate. They did this with a funny-looking pair of glasses and a pen-thingy that they touched to each electrode. Then he was taken into the actual MEG room, where his head was surrounded by the magnet-detecting machine.

Micah sleeping in David's arms, waiting to go into the MEG scanner. You can see the glasses he is wearing. They took these off soon after this photo was taken. Those white things on his head are the tape pieces holding the electrodes on.

When he has a seizure, his brain gives off electrical impulses, but it also gives off a very weak magnetic field. This machine can read the magnetic field somehow, using liquid hydrogen-cooled detectors. The advantage of using the magnetic impulse for diagnostic purposes is that it is not affected by the fluid around the brain, the skull, muscle, skin or hair that can distort a normal EEG slightly. It is as if the brain were bare, even though the test is completely non-invasive and benign. The data from the EEG, MEG and MRI is then fed into a computer program to help the doctors determine whether surgery is the right option. If it is, this 3-D brain model will also be useful during the actual surgery, as they pinpoint exactly where to cut.

 We did know upon leaving the MEG center that Micah had a "successful study". This means that he had seizures during the scan, and they got clear data. This is good. And bad. But not a surprise, since his EEG from June showed seizures. But if he hadn't had any, we may have had to re-do the scan. But even though we're very glad that's not necessary, it's just hard having it reaffirmed that, yes, he is still having seizures.

This past Tuesday we got a call from our epilepsy doctor, who had a chance to look at the test results. Everything indicates that surgery is a good option. We now have an informal recommendation for surgery, pending Micah's case being presented at the Neurology Congress on September 5. Unless all the doctors are out on vacation that week, in which case it will be delayed for two more weeks. In other words, we may know the first week in September whether or not we're going to do surgery. Honestly, this is good news, but mostly it's terrifying for me. It keeps sinking more and more deeply that we are probably doing this thing. Sometime soon. We have no idea when, but probably soon.

On a much lighter note, he started another year of preschool again last week. Here he is before the first day.

A big week. And peaches!

 This has been a momentous week.

~David and I celebrated our 10-year anniversary on Friday!
~My brother, Matthew, successfully defended his dissertation for his PhD!
~We learned that Micah's long-awaited test approval from our insurance company for the MEG (magnetoencephalogram) came through!

We are relieved that our months-long wait is over for that technicality. However, for a variety of reasons (all out of our control) our appointment for this test is still not until September 10. I was very disappointed about this because I had hoped this process would be smooth, swift sailing once the insurance approval took place. Not so. At this point I am just hoping to have the surgery (if that is the final decision) done before the end of the calendar year so it will be on this year's deductible.

Last week we also learned the results of his June EEG, which showed 20 electrographic seizures (the kind we can't see happening outwardly) in the 22 hours he was hooked up. This is a disappointing development, since he had none during his last long EEG in January. This makes me more anxious than ever to hurry this process along. Though we can't see anything happening, they still affect his brain function, development, and learning.

We have passed the two-year mark for this journey with epilepsy--more than half of Micah's life. Two years of some ups and many downs. He will turn four next Thursday. We love our boy so very much and look forward to celebrating four years of knowing him! Last year on his birthday, I ended my post with "Next year, a birthday without seizures!" We hope to get our wish this year. He won't have to wear a helmet. We likely won't see any seizures (though we know he'll have some). So, much better! And he won't have to eat keto-cake! We still haven't decided on a cake theme--so many possibilities now!

We picked peaches and blackberries at Tree-Mendus Orchard in Eau Claire, Michigan this morning. Here are some photos from our fun. The weather was perfect and the peaches and blackberries beautiful!

He had fun in the trees. There were plenty of peaches at his level.

Despite the dire warnings about the lack of a peach crop in Michigan this year because of extreme weather, the trees seemed full of fruit. The blackberries on the other hand, were definitely sparse.

That is blackberry juice on Micah's face. And everywhere else, including his belly button. 

He helped load our buckets.

 

Don't scratch your hat!

After a hot and windy few days in Chicago, we arrived back home yesterday afternoon. Development testing is finished for now. We'll wait for a report, though we pretty much know what it's going to say. In fact, I'd rather not know the gritty details. It's just not fun to subject your child to this kind of testing. Micah has been comprehensively tested five time in the past two years. These tests don't reflect the wonderful progress that he has been making in the past few months. And there has been tons of progress, as many of you have witnessed! We are thrilled about this. But these tests only show the "delays." I have come to loathe these tests.

This developmental stuff is much harder to deal with than the medical things. The medical things are relatively easy to talk about because they are concrete. And I KNOW I can't do anything on a daily basis, other than giving the appropriate medicines, to change them. The developmental things, however, are a different story. It feels like I should be able to fix these "delays." That if I somehow just work harder, and force him to work harder, that everything will get better. But I am his mother and not his therapist. I can follow through at home with the suggestions from his therapists, but I can't do it all day long, every day. Neither can he. He's a little kid, after all. So, this, like the fact that he has epilepsy, is something I can't fix. I grieve this. I grieve that he has to work so hard to master some things that just come naturally to other children. This is just as hard as dealing with his epilepsy in the first place.

And these tests will never test some of the things he excels at, like music. He has a spot-on sense of rhythm and pitch. He can make up his own fancy (and musically appropriate) endings to songs--the kid's got flair. When we get to the end of songs on familiar CDs, he not only knows what song is next, but can begin singing it, in the correct key, before it starts. His musical creativity and memory are something special--just a few of the many special things about him!

He's also a big-time trooper! He was hooked up to the itchy, uncomfortable EEG for 23 hours, and was incredibly patient most of the time, even though our mantra had to be, "Don't scratch your hat". We were so grateful (as I posted before) to have our own room in the Epilepsy Center at the new Lurie Children's Hospital in Chicago. When Micah did cry and scream a few times, all we had to think about was helping him to cope and calm down, rather than having the additional worry of bothering whomever our roommate was. And no one else's crying bothered us, either. Micah actually slept about 9 hours last night. David and I also got almost sufficient sleep, despite the typically uncomfortable hospital furniture (new, though it was). Not bad.

We haven't gotten the final results of the EEG, but we did learn that he appeared to have a few of the electrographic/sub-clinical (ones we can't see happening) seizures again. Big-time bummer! Our epileptologist is not alarmed by this, though, saying that it is consistent with the active malformation Micah has. We are increasing one of his meds to try and stop them. The EEG is also still pointing toward the possibility of surgery, but we  have to wait for the MEG test before getting final approval.

All in all these were a good few days, considering that they were filled with medical appointments for a three-year-old.

Pre-update update

Well, I've been waiting for some sort of significant update before writing another post, but that doesn't seem to be happening any time soon. But life goes on even when insurance companies are SLOW. We head to Chicago Monday through Wednesday of this coming week. We were able to combine two different appointments into one trip, so that is good. On Monday afternoon Micah will have another two hours of developmental testing to get a baseline before possible surgery.

We did this same thing several weeks ago, but they need to do some additional things because he's kind of falling between two tests developmentally and age-wise. They'll patch some parts from both together. It was frustrating that they didn't get what they needed that first day, and it's always exhausting to have Micah do these kinds of tests. It's hard as a parent to be part of a situation where the person working with my child is there not to help him succeed. She was there to get a snapshot of what he was willing to do at that moment on that day. There were things I knew that he could do--if he had cared. He just didn't feel the importance. And really, I don't care very much. This was a hoop to jump through. It has no bearing on services that he does or doesn't receive. It is just so that they have something to compare it to after surgery.

We will spend Monday night in Chicago and then he will be admitted to the hospital on Tuesday morning to be hooked up for a 24-hour EEG. We are excited that this will be our first time in the new Lurie Children's Hospital of Chicago! The old hospital, Children's Memorial, has been renamed and moved to a gorgeous new building downtown. If you want to take a look, there is a virtual tour here. We'll be spending most of our time on the 19th floor. The new building will mean: Micah will have a private room for the duration of his stay. This is such a relief! The most stressful part of being at the hospital has always been having roommates. You're stuck in this tiny space with other families of hospitalized kids who may or may not share your desire NOT to have the TV blaring at all hours of the day or night. And when your own kid wakes up at four in the morning, it will be so nice to have only two people (me and David) be annoyed by that. Oh, and we can both stay in the room with him! This means easy tag-teaming in case of another 4:00a.m. wake up. We look forward to exploring the new facility, but will miss the noodle and falafel joints in Lincoln Park that have sustained us through Micah's previous hospital stays.

We are still waiting for our insurance company to approve the MEG test that we need to do before surgery can finally be recommended. We have already waited more than 6 weeks. They said "6-8 weeks", so we're still in that window, I guess. I also had to spend way too much time talking on the phone to reps from our health insurance and the hospital and doctor's offices this week after a claim for an EEG was denied, because it was "inappropriate" care. You are probably as surprised as I was. I finally figured out, in the course of these many conversations with different people, that the problem came from a diagnosis coding error. The code linked to this denied claim was too vague to qualify. And yes, I was the one to figure out what the problem was. Good thing I had time and skills and persistence to figure it out. I still haven't nailed down whose fault that was. Everyone is denying responsibility for the error. But they do all recognize that an EEG is appropriate for a kid with  a severe seizure disorder, so I have faith that it will work out and we won't be stuck with the (rather large) bill.

Non-medically, we're having a grand time. David's parents were here for several days last week and Micah had so much fun building towers and lounging on the trampoline with Grandpa and reading books with Grandma. These days he is fascinated by any mag-a-net (as he says it). He has fun building bridges and experimenting with his magnetic Tegu blocks. It is kind of wild how magnets let us defy gravity! His friends Abigail and Deborah gave him a magnet board and he also loves playing with his letters on it.

Still on the path

Micah had a PET scan two weeks ago, and we finally had a chance to talk with his epileptologist (Dr Nangia) about the results. As we expected, the information was not revolutionary. In her opinion, the PET scan is consistent with the information from the EEGs and MRI, which means she is still at this time recommending surgery to remove the abnormality in his brain. But she still wants to do one more test, a magnetoencephalogram (MEG) that does brain mapping. This should help pinpoint with more precision the place(s) that most need to be removed in order to have the best outcome from surgery, which we hope will be seizure freedom for life.

Getting this data should also be able to lessen the risk of damage of some sort to vital function in the surgical process. Since the abnormality appears to be in the left frontal lobe, where language is lodged, we want to make sure that this procedure is as safe as it can be at preserving the language Micah already has and, we hope, improving it long-term.

So, the next steps are these:
1. A MEG (pending insurance approval)
2. A complete baseline evaluation with a neurodevelopmental psychologist.
3. Another overnight video EEG (grr, those things are brutal)

And once those things are complete:
4. Dr Nangia will present Micah's case to a Neurology Conference at Northwestern-Feinberg SoM, which will include all the neurologists, epileptologists, neurosurgeons, interns, residents, fellows--if they work with brains, they are there.
5. We will meet with Dr Nangia to hear the recommendation of the team.

And if the recommendation is to do surgery:
6. Meet with neurosurgeon and Dr Nangia to learn more about the procedure

As you can see, this isn't going to happen anytime soon. We're looking at June, at the earliest, maybe July. Which is actually fine, since Micah would be out of school for the summer at that point, and it would happen at the new hospital location in downtown Chicago. Looks like a gorgeous building, and each child has their own room. Expensive, yes, but I can only dream of how much less stressful and more restful that would be, especially after major surgery.

I go through periods where I feel pretty panicky about the idea of surgery. Then at other times, I hope against hope that he turns out to be a good candidate, which might mean we could put this behind us. Not a fun decision to make, but, again, if they recommend surgery, we plan to do it.

We are enjoying this in-between time, while his seizures are well controlled and we see improved development. Micah loves to play outside these days, and can entertain himself for a long time with rocks and sticks and soccer balls, and today, the bicycle pump. Air blowing in your face is hilarious.

[imagine fire alarm noise here]

So, did you hear that some kid pulled the fire alarm at daycare? Yep. That was my kid. This is the news that greeted me at Thursday's pick-up. Micah is curious about every thing--what it does, how it works, etc. Maybe it is surprising that it hasn't happened before. After all, a fire alarm is a shiny red box on an otherwise boring wall, at just the right height for a tall 3-year-old. Fortunately it was not too cold or rainy that morning. But because they had not had warning, the fire engines actually came. What a brouhaha! The director assured me that it has happened before. I had a talk with Micah in the hall after I picked him up, pointing out the fire alarm and stressing the "never, never, never" nature of it. What seemed to sober him up considerably was when I told him that it was scary for people when he did that. He doesn't like to be scared. Even several hours later he would randomly say, "People were scared of the loud noise!" I guess we'll just have to see if it sticks. Here's hoping! I'll just tuck that story away for sometime later.

On Tuesday night we will drive to Chicago, and, we hope, stay at the Ronald McDonald house for the night in preparation for Micah's brain PET scan on Wednesday morning. We have to be at the office in Westchester (a suburb of Chicago) by 7:15am. He will be sedated and injected with a glucose tracer for testing purposes. We plan to come back home that afternoon after he comes out of recovery. We probably won't know results for a week or so, when we might know more about whether or not our doctor will recommend surgery. I try not to think too much about that yet. For now, though, we are just enjoying the seizure-free, keto-free life. And even the things, like fire alarms, that make our otherwise normal life, um, interesting.

Even *more* good news

This post is a few weeks late, but better late than never, right? We received the results of Micah's EEG from mid-January, and for the 14 hours he was hooked up, he had no seizures of any kind! Even the sub-clinical ones are gone. We are thrilled that it appears we finally, after more than a year-and-a-half of intensive treatment, have control of these seizures!

We do not know what impact this current, wonderful news might have on our decision to proceed with possible surgery to remove the abnormality in his brain. It is still there. It won't go away on its own. And though we have control of the seizures now, there is no guarantee of how long this remission might last. It might be permanent, but, then again, the seizures could start up again at any time--next month or in 20 years. We do plan to go ahead with further testing, and see what the doctors say. With his history of thousands of seizures, just because he doesn't have them right now does not necessarily mean that surgery isn't necessary at this point. It may be the right thing to do. We just have to take this one step at a time.

First, he will have a PET scan on March 14 in Chicago. He will be sedated for this test because he has to stay absolutely still for a long period of time. If any of you have seen him in action recently, you'll know that only drugs would make that possible!

He is doing very well right now, and so are we. Aside from the parenting challenges these days. In some ways we are dealing with the frustrations of both a two-year-old and a three-year-old all at once. In some ways he is normal and in some ways he is on his own schedule developmentally.

Cords and outlets are his current obsession. Again. Except now he really wants to know how they work. But the impulse control is not there to stop himself from doing it when we know he knows better. I know to come running when I hear his verbal narrative. "Don't touch the plug" or "Danger, danger". He says it, but doesn't listen to his own good advice!

He is also delightful! Full of joy and affection and silliness. His own fake burps are a current favorite giggle-getter. He didn't learn that from me! He still loves singing, and knows so many songs. We enjoy his mash-ups of such classics as "My bonny lies over the ocean", "Happy Birthday" and "Row, row, row your boat." He also makes up his own words to the tunes he knows. What fun!

We are so grateful for the good news of this latest EEG. What a miracle the last several months have brought! Still on the journey, but in a far different place.

The End and the Beginning

Monday night's supper was a milestone: last keto meal, forever, we hope. Tuesday morning's breakfast was also significant: first non-keto meal in almost a year. We made pancakes for breakfast today (Tuesday), with peanut butter and fruit, since Micah is still supposed to avoid sugar for a few weeks. A fork wasn't fast enough for him to shovel it in, so he used both hands. Peanut-buttery hands and utensils and cup--delightful! There will certainly be adjustments, and it may not all be a smooth path to eating normally, but regular food, here we come!

We head to Children's Memorial in Chicago on Thursday for an overnight EEG (2pm Thurs to 7am Fri) and then an appointment with Micah's doctor on Friday morning. These EEGs are always exhausting for us all, so we'll be glad when it is over. At our doctor appointment, we hope to learn more about the schedule for testing and possible surgery. But we still won't know for a while whether or not surgery will be a good option.

Micah is loving life right now. His favorite things to do these days are sing and dance, play with playdough, read books, play with mama and daddy or friends, go to preschool, and now, EAT. We have enjoyed the few snowfalls we have had, but I'm tired of this rainy, foggy weather! It's nice to be able to go outside even in the winter, so I am hoping for more clear weather soon. And for no snow on Thursday and Friday when we are traveling to and from Chicago.

I guess I'll just say it...

Micah had a second MRI on December 12, 2011, and the results showed a small abnormality called a cortical malformation dysplasia in his left fronto-temporal lobe. Our doctor described it as a group of neurons all tangled together and in the wrong place. This has been there since he was born. It is not an injury or tumor or aneurysm. Our doctor believes this is the origin of Micah's seizures. She believes that the second type he had (generalized drop seizures from all over his brain) resulted from irritation caused by the first type of seizures he had (partial or focal seizures). It was these secondary seizures that the ACTH steroid was effective on. He continues to have subclinical (undetectable) focal seizures even now.

He did have an MRI last summer before he was two years old, on which they didn't see this. This is not surprising, since his brain was less mature at that point, which would have made it harder to see. And in fact, the first read of this MRI indicated no problem. Our doctor made the radiologists look again at the particular place where his seizures originate, and then they found this slight abnormality.

What does this mean? Once Micah has finished on the ketogenic diet, we will begin the process of a pre-surgical work-up. He will have more extensive testing to "prove" that this malformation is what has caused the seizures (PET scan, MEG, and other tests). If it turns out to be unrelated or he's not a candidate, we'll try something else. If it is "proven", and our epileptologist and her team (other epileptologists, neurologists and neurosurgeons at Children's Memorial and the Feinberg School of Medicine at Northwestern) recommend it, we plan to go ahead with neurosurgery to remove this small, malformed part of Micah's brain. There, I've said it (well, written it at least). Micah might have brain surgery. Soon. Gah!!!

We really don't know much yet, other than that more testing needs to be done beforehand. They do very careful screening of surgical candidates, and so we don't know for sure that Micah will qualify. The malformation has to be large enough to be seen in surgery, as well as in a place where operating will not cause damage to healthy brain tissue. This is not a life-or-death malformation so if he's not a good candidate, we obviously won't do it. Still, the drop seizures could come back at any time, so we want to do something if we can. When this surgery is performed, though, success rates are high. It can cure epilepsy. I have been reading some about it, and have seen so much positive feedback. Adults who finally have this kind of surgery wonder why they put it off for so long (fear) since it has made their lives so much better now that they are seizure-free. Micah is at a good age for this. He is a strong, healthy boy, not a fragile infant. Being as young as he is is an advantage for healing and brain adaptation after surgery.

I can talk about this clinically all day long. But to think of actually sending my baby into a surgery where they cut his head open and remove part of his brain? Terrifying! We have had to make a lot of decisions on this road, but this will be the hardest by far. Statistically, this surgery isn't really any more risky than the ACTH injections, but it feels very different because they would cut open his head!

I continue to try and process what this means. None of us is perfect, even if we are created in the image of God. Yet this particular imperfection in Micah has caused so much grief for him and for us. These questions will continue to rattle around in my head and will probably come out in future blog posts.

So, what's next? More testing, more waiting, more decisions. We pray for peace of mind and patience in this process. We don't know a timeline for testing or possible surgery. It will likely be a few months.