Good Is Good

A little crabby these days

Today was a good day. Today was a very good day. We had an appointment with Dominic's neurologist to review his progress and his EEG from yesterday. Dominic has been spasm-free now for 10 DAYS. In the long scheme of things, it is still very early to get excited, but for us, it's been 10 days without any of the devastating spasms we have seen since Thanksgiving. Dr. Arndt was very pleased with his progress and thought he looked very alert and seemed to be doing very well. He assured us that Dominic is carrying a lot of "water weight" (yeah, I use that excuse too) and that it will come off when he stops the ACTH. He also said that his EEG looked much better. He said that his brain activity is continuing to normalize and his EEG was almost "normal". Not normal for a baby with IS, but NORMAL, like for a normal 3 month old! This is incredible news and Mike and I are over the moon that the ACTH is working and Dominic may have a chance of leading a "normal" life. Tomorrow we reduce his dose again and the plan is for his last day on ACTH to be next Friday (1/28). From there, they will slowly begin to reduce his dosage of Vigabatrin and hopefully wean him off that too. The goal is to have him on Topomax for at least a year with no seizures. After a year, if all goes well, they may consider taking and keeping him off all meds.

He knows what's coming...

We also met with his Infectious Diseases doctor because he is still showing some CMV in his blood and urine. He will continue with the anti-viral therapy for another 3 weeks. They are concerned that he did not pass his hearing screening in the hospital and we rescheduled his diagnostic BAER test out a few weeks. His neuro didn't feel any baby on ACTH (as well as his other 7 meds) could handle being sedated for that test. But this test will give them a much better idea if Dominic does in fact have hearing loss and what to do about it. He started talking about hearing aids and cochlear implants - what??? But he then said that he could just have had wax in his ear. REALLY? I hate when people freak you out for no reason...

Mike giving him Dominic his evening injection

Sleeping if off

With all of this happiness and good news, I can't help but drag with me the perpetual dark cloud over my shoulder. I read the blog of another mom in my IS support group and read the story of her son who was seizure-free for 8 months after ACTH. They then came back with a vengeance and even after another round of ACTH, the spasms wouldn't stop. Eventually he had brain surgery in Detroit (where we are supposed to have a consult) and had half his brain removed. 

I'm filled with mixed emotions today, but Mike reminded me that today was the best news we've heard in almost two months and to take today as a good day and leave it at that. I am trying to do that, to live in the moment and enjoy it. But I can't help but worry about the future - 5 days from now and 5 years from now. I've come to terms with the fact that this will be something Dominic may struggle with for the rest of his life, but it's the roller coaster of emotions that takes it's toll on me. I'm afraid to be happy, afraid to feel relief. Because I'm afraid that if I allow myself to feel that, it will be yanked out from under me. But, today was a good day and there is always tomorrow to worry about tomorrow.

Liar, Liar



He is HUGE!

Dominic is making Mike and I out to be liars. While my mom was here to help with our "irritable" and cranky baby, he was an angel. He still didn't sleep much, but he was content if held or in front of the TV. She left yesterday and the rage began again. He was inconsolable most of the night and Mike and I had to take shifts and got about 4 hours of sleep each. We finally at 6:00 am turned on the dishwasher and sat him in his car seat in front of it and shut the door to the kitchen. Our dishwasher takes awhile to run, so he was quiet for awhile. I sort of feel like I'm neglecting him, but a woman's got to sleep and even his neurologist suggested investing in ear plugs, because there is nothing more you can do. He's fed (probably overfed) and dry and so totally exhausted. But steroids just make you feel like you want to peel yourself off the ceiling, they just whack you out....or so I've been told. So, I can't imagine what he's feeling, but for a 3 month old to only sleep a few out of the 24 hours in a day, he must be totally sleep-deprived. Fortunately, he has been okay today. Mike put him in front of the clothes dryer and that put him to sleep for about an hour and he hasn't been horribly cranky. Our friend Rachel came up to visit and the whole 2 1/2 hours she was here, he was silent! Just rocked happily in his swing. People must think we are making this up! I guess he just likes to save it for the middle of the night.



This kid loves TV

Hopefully we only have a couple more nights of this, as the plan is to reduce his dose of ACTH on Monday. Because he hasn't had a spasm since last Sunday, (still keeping fingers crossed!) they are going to start the weaning process. So, Monday - Wednesday he'll be on a lower does and then for 3 days at a time for the next two weeks after that, the doses will go lower and lower until they take him off it on Jan. 28. This is great news because we were originally told this treatment would be 6 weeks. Our neurologist has done a lot of research and has found that doing two injections per day (as opposed to one) for 4 weeks (instead of 6), the side effects are less severe and has better results. So, we are hoping and praying that he's right and that we don't seen any spasms return. Yesterday the doctor reduced his Vigabatrin from 1000 mg to 750 mg, so hopefully next week will be a better week with him being on lower doses of both. His blood pressure was high on Friday, which could contribute to the rough night we had last night. He also has diarrhea all the time, so hopefully that will get better too. If I were Dominic, I'd be pissed off all the time too.

Trying to rest

Mike and I are very encouraged by Dominic's progress and the fact that he hasn't had a spasm since last Sunday, but it feels like we're waiting for the other shoe to fall off. Just waiting for the day the spasms return. I feel like we are bracing ourselves for this nightmare to start all over again. If by chance Dominic continues to stay seizure-free, it will be a miracle. I believe in miracles, and I know they happen all the time, and this would be nothing short of a miracle. With the relapse rate we've seen, it will take a miracle. I know that our God is the Great Healer and that he has healed the sick, made the lame to walk and raised the dead. So, I know he can heal Dominic. But I also know that he doesn't heal everyone and he doesn't give everyone the miracle they ask for. But I am ever on my knees, praying my for my miracle.

"Roid Rage"

Now I know why they call it that. "Rage" is definitely a word I would use to describe Dominic the past several days. I'm starting to lose it after 5 consecutive nights of little to no sleep. I really don't know if I can do this another 3-4 weeks. Dominic has continued to get crankier and hungrier. I honestly do not understand how this kid functions without sleep. We finally let him cry for about an hour at 3:30 in the  morning, thinking he had to be overtired and hoped he would eventually fall asleep. After an hour of constant crying, I gave up and sat on the couch with him and nursed him. But all of this lack of sleep is starting to catch up to me. Mike is doing the best he can and always offers to hold him or give him a bottle, even in the middle of the night. But that's not what he wants. So, no rest for the weary. Even Dr. Arndt told us to invest in some headphones :o) However, we are blessed to have my mom here for a few days to help out. She was sweet enough to stay up with Dominic until 2am last night to give Mike and I some much needed rest. She has also given Mitchell the attention he is looking for.

While I'm on the subject, I want to give a shout out to all the friends and family who have helped us out. Mitchell has been spoiled by getting to see both his grandparents a lot over the past several weeks, as well as his buddy Ben. Ben's mom Katie has been such a blessing as she has a new baby  herself, but always takes Mitchell during doctor visits. Mitchell is in for a huge treat next week when he goes to stay with his Aunt Mary and cousins for a few days while I take Dominic to several doctors appointments, an EEG and diagnostic hearing test. There are so many others to thank, it could take all day. But to everyone who has made a meal, sent a card, watched Mitchell, made a phone call or just said a prayer for us -- thank you, from the bottom of our hearts!

Due to all of this eating, Dominic has gained about 2 pounds in the last week! Along with that though, he's having diarrhea all the time since it seems his GI tract is not getting any rest. The Pediatrician is putting him on a probiotic,so, add another med to the list! This poor kid. I had to include a picture though, because he is getting so stinkin' chubby, it's so cute.

Chubby Bunny!

With his "club" feet and hands. 

 

The nurse came this morning and had to draw blood (has has such small veins, she had to warm his hand and feet with diapers filled with hot water to get the blood flowing, hence the picture). His glucose levels were higher, but not at the point they are concerned yet. His blood pressure is still okay and no fever. So, good news there.

The occupational therapist came Monday and hadn't seen him in a few weeks because of our hospital visit. She seemed to think his tone was getting better and that he seemed to be tracking and focusing on things better. So, yeah! We also visited the Opthamologist today and since she first evaluated him (during our first hospital stay) she thinks his vision has improved. He is tracking, responding to light and contrast. So, she said things are looking good. He's probably a little delayed, but all things considered, doing well. He'll need to see her every couple of months because the Vigabatrin can cause permanent peripheral vision loss, she'll need to keep monitoring him. Although, it's pretty hard to check for that in a 3 month old without sedating him. Hopefully he won't have to be on Vigabatrin long-term and it won't be an issue. Wishful thinking :o)

Now for the big news...Dominic has not had one spasm since Sunday night at 7:15 pm. I'm so afraid to  put that in writing because I'm sure I'll jinx myself. But, this is huge. I'm not getting my hopes up, as we had a few spasm-free days on the Vigabatrin at first too. But, it's showing that the ACTH is working so far. It's common though for kids to stop having spasms, and once you wean them off it, relapse. So, again, not out of the woods or even close, but the past few days have been spasm-free, so I'll take it. And if the ACTH works, all the crying, screaming, eating and sleepless nights will be worth it.

A moment of calm with Grandma

My aunt emailed me the other day and told me that the small church they attend when they go to their cabin, which isn't regularly, had Dominic listed on their prayer list. She had only mentioned it once and was surprised that he was in the bulletin and that the congregation was praying for him. She asked me if I ever thought that God might actually be working through my little guy to witness for Him? I pondered that for a moment and thought to myself, "absolutely". I do not believe God makes bad things happen to people, but that he allows these things to happen to use to draw us closer to Him. I believe He can bring great good out of even the most difficult circumstances and I told my aunt that I do believe He is using Dominic's situation to bring Him glory. Dominic is touching so many people in a way that can take many a lifetime to do, and for that I could not be more proud of him or more honored to be his mother.

Our Little Violet

This morning came very quickly as the night sort of blurred into the morning. The insatiable hunger has kicked in, along with the irritability. Again, not as bad as I imagined, but he's cranky pretty much all the time. He wants to be held all the time and sometimes that doesn't help. The only thing that always calms him down is nursing. I'm either holding him or nursing him so often I don't seem to have time for anything else like picking up my house, cooking, cleaning, getting dressed or entertaining Mitchell. Last night Mike and I finally got Dominic to bed at midnight and at 1:15 he was up. Every time he'd fall asleep I'd try to put him down and he'd wake up crying. So, I slept sitting up in bed and basically nursed him from 1:15 to 6:30 this morning. Finally I told Mike at 6:30 that I had to get some sleep and he took him from 6:30 until 8:30 when of course, he wanted to nurse again. I can see why babies on this med gain so much weight, I feel like a freaking milking cow! But, hopefully this helps me lose some of that baby weight :o)

Although the crankiness and hunger have kicked into high gear, the other side effects seem to have stayed away so far. The nurse came again this morning and his weight, glucose levels, and blood pressure are still normal, so that is a good thing. Although, we're only on day 6. But, we take it day by day and today is a good day.

On a good note, I think we're seeing some progress. On Thursday, he only had two episodes and they were 13 hours apart. He was having the clusters about every 3-5 hours prior to the ACTH. Then yesterday, he only had two episodes. He had some this morning at 6:30 am but he had gone 20 hours since his last episode. So, we're seeing them start to space out, which is good. Also, I spoke with Dr. Arndt and he said the EEG Dominic had on Tuesday is much better than his original EEG. He's starting to see some normal sleep patterns and his "background" activity (which I'm not really sure what this is) is sometimes in the "normal" range. Obviously, because of his condition, Dominic will never have a "normal" EEG, but to see some normal activity here and there is a great sign that the medication is working. His first EEG I was told was all over the place and full of a lot of chaotic brain activity, so this is a great improvement.

A dear friend of my family sent me a daily devotional called "Streams in the Desert" and I have been trying to read it each day, although that doesn't always happen. But yesterday Dominic was really fussy so I sat down with him and read the reading out loud to him. The verse was from Philippians 4:11 - "I have learned to be content whatever the circumstances". Paul wrote these words from a dark prison cell. The reading went on to tell the story of a king who went to his garden one day only to find it withered and dying. He went to each plant and asked what the trouble was. The Oak tree wanted to be as tall as a Pine, the Pine was mad it didn't bear fruit like the grapevine, the grapevine wanted to produce fruit as large as peaches and the geranium was fretting because it wasn't as tall as the lilac. Yet coming to a violet, the king found it bright and happy and he told the violet he was glad to find a brave little flower in the midst of this discouragement. The king told him he didn't seem least bit disheartened. The violet responded "No, I'm not. I know I'm small, yet I thought if you wanted an oak or a pine or a peach tree or even a lilac, you would have planted one. Since I knew you wanted a violet, I'm determined to be the best little violet I can be". The moral of the story being that "others can do a greater work, but you have a part to do and no one in God's family can do it as well as you". It hit me as I was reading this and looking at my little crying baby that Dominic is God's little violet. He may not ever go on to be a great athlete, or become valedictorian, or go on to become CEO of a company, or do other great things as others will, but he can do what God has planned for him to do. I need listen to Paul's words and be content whatever the circumstances and know that when I strip myself of everything, it is in that nakedness that I will find everything restored a hundredfold.

My mother-in-law gave me a necklace for my birthday, which happened to fall on the day we were released from the hospital for our first visit. She had ordered it months prior, not knowing what was to come, but it seemed to be such a fitting gift. It is a necklace with a ring and on that ring it says "I can do all things through Christ who strengthens me". The other night I was nursing Dominic and when I tried to pull him away to burp him, he was stuck on something. When I looked down, I saw his little hand grasping the necklace and holding onto it, what looked like, for dear life. I'm not sure if I'm just more emotional right now, but I started crying. Because it's true, he can do all things through Christ, who will give him the strength. And it seems like he knows that as well, and is holding onto that with a small, firm grasp.

Home Is Where the Heart Is

We were released from the hospital yesterday and our first night home went pretty well. Dominic went 13 hours yesterday with no spasms, but then six hours later had an episode. Dr. Arndt assured us it's still early and to not lose hope. We have to look at the overall trend over a few days as opposed to one day at a time. So, if two days from now he's had less episodes on average, that's a good thing. If they have not completely stopped after two weeks, they will probably take him off the ACTH and assume it's not working. At that point we would head to Detroit for a surgical consult, PET scan and second opinion from Dr. Chugani. He will also be scheduled for genetic testing to determine if he has some chromosomal abnormality that is causing the spasms. It's hard to pinpoint genetic disorders, but they want to test, just to rule other things out. If it is a genetic disorder, there isn't anything different they would do to treat it, it would just give us an answer. We're reminded once again what a guessing game this disorder is.

Getting his hearing test

While he was in the hospital, the Infectious Diseases doctor put him on an anti-viral because of the CMV he had in his blood/urine. Even though his levels were low, suppressing his immune system with the ACTH could cause the virus to reactivate. He also mentioned that congenital CMV can cause permanent hearing loss. So Dominic had a hearing screening, similar to the one he had when he was born (which he passed then). Unfortunately, he failed this one and now has to have a diagnostic hearing test to determine if he does in fact have hearing problems. Mike and I looked at each other like "great, add it to the list". This poor kid, how many more things can we find wrong with him this week!

Our visiting nurse came this morning and says I'm already a pro at giving the injections, I guess that's a good thing. Dominic is a champ when it comes to getting them too, he didn't even cry this morning! He actually hates getting the other 7 medications more. We can tell he's happy to be home and off all the monitors and wires. He just seems so at peace in our arms, in his own house. He's not as cranky and irritable as I expected, although I'm told it might take a few days before that kicks in. He was actually alert this morning and I even caught a few smiles!

Stick it to the Man

ACTH treatment continued today but both Mike and I got to "take a stab at it". I don't have a queasy stomach and I actually have no fear of needles, but poking my 3 month old baby with a 1 inch needle was really difficult for me. Fortunately, we both did great and hopefully we'll be ready to go home tomorrow and continue doing it ourselves, with the help of a visiting nurse.

Dominic does NOT like getting his injection

We're trying not to get ahead of ourselves or be discouraged, but Dominic has been having on average more spasms the last two days than he had been having on a daily basis the last two weeks. We're no sure what this means, it doesn't necessarily mean that the ACTH is not working. But it's not really encouraging that they seem to be getting worse instead of better. Who knows, his neurologist said it could possibly just be a bad day. We'll see how tomorrow goes. He is currently hooked up to a 24 hour video EEG, so we'll see what that shows. He has also had a couple spells of this new "seizure", if that's what it is. Neurologist says it could be Myoclonic twitches or jerks. Great, that's all we need.

Hooked up for another EEG

It's 11:40 pm and for the past two nights, Dominic has had a "fussy" period from about 9:00 on. Last night it ended at 1:30am. We'll see how tonight goes. I guess we're getting a taste of the irritability...awesome.

Awake and loving the ponytail of wires

We're trying to stay positive, but it just seems like over the past few weeks there has been no good news. It's hard to try to feel like we're doing the right thing when he doesn't seem to be getting better. We're just asking for lots of prayers that the ACTH works and that his spasms STOP.

Working on neck control

Hit Me With Your Best Shot

Well, we're back at Helen DeVos Children's Hospital and began the ACTH treatment today. They have him all hooked up to the monitors and has had a chest x-ray, urine sample, blood draw (which again, they had to poke him 4 times to get enough blood) and his first dose of ACTH. After they finally got enough blood,  he just looks over at me with sad little eyes and gave me this look like "Not again, Mom! Why are you doing this to me??." It is so incredibly hard to watch him go through all this and know there is nothing I can do to make the pain stop. The poor thing, I don't know if there is any place that he hasn't been poked and prodded.

Mike and I spent part of this afternoon practicing drawing from a vial and learning how and where to give the shot. I'm petrified, I can't believe they think I'm qualified to give him two shots a day! You have to be so careful to keep everything sterile and not touch anything that will touch him and you have to give the exact amount. It's not like accidentally giving too much Tylenol. It's a good thing they are setting us up with a visiting nurse when we go home. He or she will come 3 times a week to monitor his blood pressure and glucose levels and other vitals. All of this just makes me really nervous for the coming weeks. Besides the irritability, high blood pressure, diabetes, low immunity, ulcers and insatiable hunger I've been warned of, there is just so much that goes with caring for him during this treatment. I have to test his urine everyday, his blood pressure 3 times a week, watch like a hawk for the first signs of infection and give the shots twice a day. Besides the ACTH, he will also continue to take his Topomax, Vigabatrin and Carnatine and they're putting him on a stomach protector to hopefully avoid ulcers. I can't really take him anywhere because of the risk of infection, so I'll basically be a hermit for the next 6 weeks. I will welcome visitors :o) On top of all that, I have to try to find time to care for his 2 1/2 year old big brother! I am just praying for peace and strength to get through the next several weeks. My biggest fear is that after putting him through all this hell, the spasms don't stop. I honestly don't know if I will have the strength to handle that.

Dominic has continued to have the spasms today, but it's not surprising. They hope to see a decrease in them by day 3 on the ACTH, but we may not really know if it's working until after 2 weeks. The goal is for the spasms to stop and wean him off the Vigabatrin, then ACTH and have him continue on the Topomax indefinitely. I'm trying not to get my hopes up that this will stop the spams. Maybe that way, if I'm prepared for the worst, I'll be pleasantly surprised.



On a final note, Mike and I just wanted to thank you all for your prayers. I swear half of America is praying for him. From our family and closest friends, to incredible co-workers, to complete strangers, there are SO many people praying for him. Just last weekend, the Archbishop of Chicago was visiting our church and he blessed Dominic and said he would hold him in his prayers as well. We feel so fortunate to have such an incredible support system, so thank you all so much!