Brain Surgery, What???

Yes, we have been talking brain surgery with Dr. Arndt and Dr. Chugani. Dominic has been having seizures for weeks now. Sometimes a few a day, sometimes just one. The majority of them are at night, so there is a chance he could be having even more and we just don't know it. The last few weeks have been nuts. Besides the seizures, Dominic has been projectile vomiting every few days. He's currently on eight medications, so it's hard to know if it's one of them upsetting his stomach or something else. Over the past weekend, he was very lethargic and had some new sort of seizure. He also threw up Friday and Sunday. The neuro on call thought his sodium levels could have been too low, which is a side effect of Triliptel (one of his 4 seizures meds). We spent the afternoon in the ER getting a bunch of blood work done. Nothing came back alarming, although his sodium levels were low. The advice of the ER doctor was to give him pretzels to chew on...awesome. Luckily, we had an appointment with Dr. Arndt the next day and were able to sit down and try to figure out what's going on. Because his sodium levels were on the low side, we decided to lower his Triliptel and add Zonegran, another seizure med (similar to Topamax). He also let us know that he reviewed the MRI scans from Detroit and the swelling around his brain stem (which they initially thought was a brain stem stroke) was totally gone! Amazing news and yet another miracle. That pretty much proved the theory that the Vigabatrin caused the swelling and it was indeed reversible. Praise the Lord!

An official thumb sucker!

Dr. Arndt was thrilled to see how well Dominic is doing developmentally and because of that, he feels that if the Zonegran doesn't stop the seizures, we should pursue surgery right away. If the Zonegran doesn't control the seizures, this would be the fourth seizure med that failed. Usually failing 2-3 qualifies you for surgery, among other things. So, the brain surgery option is becoming very real. Dr. Arndt feels that the sooner the surgery is done, the better chance he has developmentally and he wants to preserve the progress he's made. The road to surgery is long - we would start with a 48 hour EEG (which we have scheduled on July 5th), then do a PET scan and an MRI. Also, depending on what they find on the extended EEG, there is a chance they would have to do an EEG where they remove part of the skull and put the electrodes directly onto the brain. This is the best way to find the exact location of the seizures. We're hoping we don't have to do that, but you never know. We were hoping to not have to discuss brain surgery either!

Starting to sit up

We had an ultrasound and saw the Urologist on Tuesday and got some good news. His kidney stones are about half the size they were. This is probably a combination of taking him off the Topamax and putting him on Bicitra. So, at this point no need to remove the stones and we'll go back in 6 months for another ultrasound. One thing to check off the list!

Below is a fun video of Dominic "talking". He's found his voice and wants everyone to know!

Using that right arm more and more

Besides the seizures and vomiting, Dominic is doing pretty well. He's happy and making progress in OT and PT. He can even "sit up" for a few seconds on his own before he topples :o) It's crazy to think that we may soon be pursuing brain surgery! Mike and I aren't sure how we feel about it, it's not like just getting your tonsils out, it's removing part of his brain and hoping the part that is left will resume the functions of the part you removed. There is a chance he could lose some motor function, but they won't really have a good idea until they know where and how much they have to remove. Because he has cortical dysplasia, where one side of the brain is malformed, there is a very low chance he will just grow out of seizures as he gets older. The surgery is the best option and will give him the best chance at development. He also wouldn't have to be on four seizure meds. There is an 80-90% success rate and most kids only have to be on one seizure med, if any at all. That would be incredible! I am so curious to know what sort of kid he'd be if he hadn't been doped up on meds since he was two months old. But it's also very scary. This is something we'll have to pray long and hard about and will probably go to Cleveland for a second opinion, just to make sure this is the best decision. Yet we know that God has a plan for this sweet little baby and that all we have to do is trust in Him. He will take care of the rest.

Some quiet time with Mom

Seizures, Seizures Go Away

And don't come back another day! Dominic has pretty consistently had seizures every day for the past 10 days. Mike and I are getting pretty concerned as they've upped his meds three times in those 10 days and he still continues to have seizures. And only one of those ten days has he had them during the day. They are mostly at night. So, he is back to sleeping in our room, which means we're up several times a night, each time he has a seizure. Dr. Arndt was gone all last week at a conference so I never heard from him. The other doctors in the clinic didn't want to add a new med without consulting with Arndt, so they just upped his current ones, which obviously isn't working. I'm anxious to speak with Dr. Arndt on Monday and figure out what the heck is going on with Dominic. The seizures, while he's not having them all day long really take a lot out of him. Plus the higher doses of the meds make him really tired and lethargic. It seems to set him back in PT and OT, which is hard to see after all the progress he's made.

You know you're tired when you fall asleep jumping

So sleepy and lethargic :o(

The past few weeks have been so exhausting, draining and frustrating. On top of the seizures, Dominic has cut his first two teeth, which is always a joy. He also randomly threw up last Sunday and Tuesday. He doesn't seem sick so it makes me wonder if he's allergic to a certain food. Mike and I are at a loss as to what to do. We feel so helpless. We just keep praying that the seizures will stop and we'll figure out the right concoction of meds so that this kid could just cut a break already! God has never failed us before and we know he has his arms wrapped around Dominic right now. He'll get us through this and I have no doubt Dominic will get better. It's just hard to keep our spirits up in the meantime.

Will It Ever End?

There never seems to be any downtime in the Dunlap house! We're still in the midst of perfecting Mitchell's potty use, which makes going anywhere a super fun (that's me being sarcastic). On top of that, Mitchell picked up the hand-foot-mouth virus last week. He was pretty sick Thursday-Saturday. He's feeling better, but still wakes up during the night because his throat hurts. Dominic has also been up during the nights battling a nasty cold. Mom and Dad haven't gotten much sleep. On top of that, Mike caught the flu and has been sick the past few days. That leaves me to take care of all these boys!

Saturday we were in Detroit for Dominic's MRI at the Children's hospital. My wonderful in-laws accompanied me so I wasn't hanging out downtown Detroit by myself, while Mike took care of Mitchell. Everything went well, it just made for a really long day of driving and waiting. We haven't gotten the results yet, but should hear this week. I'm very interested to see if anything has changed since he's been off the Vigabatrin.

Waiting with Bampa for my MRI

The nurses were nice enough to leave my thumb out when starting the IV

Going in for the MRI

All done and waiting to wake up!

I've learned there is no rest for the weary! After a long Saturday and a Sunday with all my boys sick, I was hoping to make an early dinner and all go to bed. Nope! I was using my brand new mandolin slicer to make sweet potato chips and it got stuck, so I pushed a little harder and OUCH - lost the tip of my finger. It was pretty bad so we ended up in the ER. Fortunately the tip will grow back, eventually, but they had to cauterize it to stop the bleeding. So, it hurts like a you-know-what and looks pretty nasty. Plus I look really cool with a big bandaged finger.

This morning at 1:00 am Mike and I awoke to Dominic screaming. He was having a seizure. He had another one at 4:00, 5:00, 6:00 and 7:00 am as well. Not sure what this means. He has been exposed to a lot of illness, but he's supposed to be on enough seizure meds to protect him from seizures, even when he gets sick. We gave him a Clonazepam and called the neuro office; we're just waiting to hear back.

So, like I said, no rest for the weary! The past couple mornings I've had to beg God for the strength and patience to get through the day. Sick kids + potty training + throbbing finger + seizing baby + no sleep = one very tired, worn out and cranky mama :o( Mike says I need to make time for myself to stay sane, but how do you make time for yourself when there aren't even enough hours in the day to take care of everyone else? Still, I know that God never gives us more than we can handle. He must just be testing my limits this week :o)

He Is Risen

I arrived home with the boys yesterday after a fun week in Naperville. We were able to spend some great quality time with my family and even got to visit with a few friends! It rained a lot, but we did get out to the park one day and out for lunch. I also completed my mission in potty training Mitchell (for the most part). He's got number one down, we just need to work on getting to the toilet in time for number two :o) We went out for a nice dinner to Catch 35 and my mom pointed out how funny it was to go to a 4-star restaurant and bring in your own potty seat in a paper bag. Hey, you do what you gotta do, right? He's a champ and I'm proud of how well he's doing.

Watching big brother at the park

Mitchell with Grammy and Aunt Lindsay

Things seem to be setting down and our lives have started to fall into a routine. We have Early On, PT and OT this week and Dominic is supposed to get his helmet and SPIO vest. Mike is anxious to decorate his blue helmet with the infamous maize wings. Although I am a full-on U of M fan, I do think the maize and blue helmet will only draw more attention to the fact that he's wearing a helmet. Oh well. We head to Detroit next weekend for Dominic's MRI at Children's Hospital of Michigan. This is the MRI that Dr. Chugani ordered. I'm interested to see if there is any change since he's been off the Vigabatrin. 

Trying to get used to wearing head gear

Seeing that tomorrow is Easter, Mike and I were reflecting this evening on what a great and meaningful Lent this was. Every Easter is a celebration, but this year is truly an exception. We have witnessed first hand the power of God. In addition to Dominic's miraculous healing, we have experienced true joy and peace in the midst of sorrow, frustration and anger. God has transformed our family this year and we praise Him for being the Father who never leaves us or forsakes us and carries us through the darkest of times. We are incredibly blessed and celebrate not only Dominic's life but the life and salvation He gives us all through His blood.

He has risen. He has risen indeed.

Happy Easter from the Dunlaps!

TGIF

It's finally Friday! We've had a busy week with OT, PT, and Dominic's helmet and SPIO vest fitting. Dominic is doing great. The kinesio tape really makes a difference, which leads me to believe the SPIO vest will work great as well. He's constantly moving his right arm and leg and finally trying to grasp things with his right hand. He's finally gotten strong enough that when you lift him by the arms and pull up (sit-ups as his OT calls it), he can pick up and hold his head up. Both his OT and PT are impressed by his gains in just a few weeks. So, that was the beginning of our week. Then Mitchell decided that yesterday was going to be the day he wanted to started using the potty. No more diapers, just undies. This probably had something to do with the fact that his best bud Ben no longer wears diapers :o) So, Thursday and today have been devoted to potty training. Going well so far.

Covered in Kinesio tape

 

Doing "sit-ups"

Setting his potty watch

We finally feel comfortable enough taking Dominic away from home for more than a day, so I'm taking the boys and heading to Naperville next week to see my family. I haven't been there since all of this started with Dominic back in November. I'm looking forward to hanging with the fam and having some extra help with Dominic as I continue to navigate the adventures in potty training. I'm just praying for another seizure-free week while we're there.

I saw this adorable little store the other day that sells artwork from a local artist. She makes all these magnetic frames and signs. What first caught my eye was the sign that hung over the entrance to the store. I saw it and immediately said "I love that and I need to have it". So I quickly browsed through the store (that's all my two busy boys allowed me) and bought the same sign that drew me in. I love it and every time I look at it I say a prayer of thanks. It's a great daily reminder for our family to always give thanks no matter what the circumstances. No matter how busy the day, or how many seizures Dominic had that day, or how completely exhausted I am, I'm reminded how much God has blessed us and how much I have to be grateful for. Now I just need to figure out where to put it!

Keep Smilin'

Knock on wood, we've had a pretty good last few days. Dominic started having seizures again on Friday, one while we were at the pediatrician's office (which we were there for a large "rash" that we thought was from one of his meds but turned out to be Eczema...I know, add it to the list). Got back on the phone with Peds Neurology and they upped his Trileptal. Fortunately he only had three seizures on Friday and hasn't had any since. It seems to be really difficult to find the exact concoction of medications. Once he gains weight, they have to readjust the doses and certain meds have certain side effects. So, pretty much every week or so we have to change things up when he has seizures. But, this week has been better - ear infections have cleared up, eczema has gotten better and no seizures. He's still hanging onto a nasty cough and teething like crazy, so he's back sleeping in his car seat. But he's sleeping, so I'll take it :o)

Yesterday we had physical therapy and she said he seemed stronger since last week. She put him in the compression suit to see how he handled it. He barley noticed and I could already see that he had better support. She also put Kinesio tape on his right arm and hand which also has already made a difference.

The tape gives support and stability to his joints and muscles without affecting circulation and range of motion and causes activation of neurological and circulatory systems. It seems weird to put a big piece of tape on his arm, but it really works. He's opening his right hand and bringing it to his mouth and grabbing for things, which he wasn't before. We should be going in to get fitted for his helmet in the next week or so too. I'm starting to realize that although his health issues are getting much better and what a miracle it is that he's had no more spasms, our life is still going to be pretty crazy for awhile. With therapy three times a week and other various appointments, things don't seem to be settling down any time soon. So, I feel like I struck gold when I stumbled across an article in the GR Family magazine about "Nanny On Demand". It's basically a drop-in day care that you pay for by the hour and don't need an appointment for. Amazing!!! Exactly what I need AND it's down the street from Spectrum. So, I checked it out with Mitchell on Monday and he LOVED it. It has tons of toys and they follow a preschool curriculum (which should be great prep for preschool that he'll be attending in the fall). The directors have their teaching degrees, are certified by the state and are all CPR certified. Best of all, it's $10/hour, which is what I'd pay a babysitter anyway. So, Mitchell went for the first time yesterday while I took Dominic to PT and he had a blast. Seriously, the woman who came up with this idea is brilliant! I'm hoping this will make my life much easier with all of the appointments.

Today we have an EEG at the neurology clinic. I'm interested to see if anything has changed with all of the seizures he's been having. Hopefully not. Then we head back to occupational therapy tomorrow. They say he's doing great and making progress and he's really only a couple months behind where he should be, but I can't help but wonder when he will crawl and walk. With his right arm and leg being so much weaker, I'm not sure how he'll be able to support himself. But, no point in worrying I guess. That's why we're in therapy. I am just so thrilled that he is such a happy baby. He's constantly smiling and is a joy to have. I still have to pinch myself each day and praise God for miracle after miracle I've seen with Dominic. Three months ago he wasn't even smiling and now he can't stop! I was telling my friend the other day that these past four months have felt like years and I would have never in a million years asked for all of this, nor wish it upon anyone else. But I am so grateful for what I learned from all of it. God has brought amazing good out of so much pain and suffering. I've seen how Dominic has affected others and the power of prayer. I've learned what it truly means to rely on God for everything. I've never truly struggled before this, but I now know what it means to lean on Him for strength - strength to get through each day, each hour, each minute, each breath. I've seen how much this has strengthened me, my husband and our marriage. I can't imagine how I would have done any of this, or will continue to do any of this, without Mike. He is such a gift. And most of all I've experienced true joy, especially in the little things like a smile.

Keep On Keepin' On

I am exhausted. I feel like I am on a hamster wheel - running to keep up and never getting anywhere. Everything is just starting to take such a toll. Just when we think things will settle down, something else happens. Fortunately, Dominic did not need to be admitted on Sunday because he didn't have any more seizures. However, we have had a horrible past couple days. He didn't nap at all on Sunday and by 5:00 was just a disaster, crying constantly. He crashed and slept well that night but then didn't nap again at all yesterday and was once again a disaster by 5:00. I was hoping he would sleep well last night since he was so overtired, but no. He was basically up from 1:30 am until I finally just got up at 6:30 am. The only thing that would calm him down was nursing or holding him. The minute I set him down he went into the no scream, breath-holding cry. I had no idea what is going on with him. I took the boys for a long drive this morning and he FINALLY fell asleep at 10:00. I called the neurologist office to see if it's from all the meds and they said probably not but to have him checked out by his pediatrician. Thank God I did! I took him in this afternoon and he has a double ear infection. This explains the seizure activity, as well as the crabbiness and sleeplessness. So, we're on antibiotics and hopefully he'll start feeling like himself again. On a good note, he did try solid food for the first time today and loved my sweet potatoes and peas. I'm excited about this but I'm also remembering what a daunting task making baby food is.

We also had his PT evaluation yesterday and found that besides adding PT once a week to our busy schedule, he will need to wear a helmet and compression suit. The helmet I get, his head is getting flat in the back. It's not horrible, but since he's delayed, he'll be on his back quite a bit longer than most babies his age since he doesn't have the strength yet to roll or sit up. So it could potentially get much worse. So, might as well nip it in the bud now and hopefully he'll only have to wear it for a few months. The compression suit is something he will wear under his clothes. It's supposed to stimulate his muscles and make him more aware of his body, since a lot of his weakness is from a delayed response from his brain to his muscles.  But the poor thing, it sounds to me like having to wear a girdle 24/7. I would hate that. But, we'll do whatever we can to help move his development along.

I have felt like this before, but it just seems like one thing after the other. The poor kid has been on so many different meds and how he has to wear a helmet and suit and potentially glasses. Is there anything that isn't wrong with the poor guy? I just feel so sorry for him. But I have to just keep hoping and praying that this will eventually come to an end and life will return to normal, or some version of it.