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.

Seizing the Day Away

We had sort of a rough weekend. After Dominic had two simple partial seizures last Monday, we thought we had them under control with the higher dose of Keppra. Unfortunately, Saturday morning I woke up to Dominic screaming. I went in and found him in his crib having a seizure.  I thought it was probably just a fluke and gave him a little extra Keppra, as instructed by Dr. Arndt. He had another one at 10:30 and another one at 1:30 before I finally called the neurology clinic. The doctor on call said to give him a Clonazapam tablet, which are used to stop a series of seizures and to call back if he had more. He was okay the rest of the night, a bit sleepy and lethargic, but no more seizures. We had him sleep in our room last night to make sure he didn't have any more. He woke up and had a seizure at 4:00 am and then again at 7:30. I called the doctor again and he said to give another Clonazapam this morning and then again this afternoon. If he continues having seizures, he'd have to go into the hospital and be given a med load through an IV. He had another seizure at 9:30 am but not one since. Hopefully we are in the clear. But, should we need to go into the hospital, I'm having them page Dr. Arndt ASAP.

Here is a video of one of his complex partial seizures. His eyes have never done the back and forth thing before, I'm not sure what that means. Please ignore the commentary, I take these videos to show the doctor and don't mean to talk so much when it's happening, I just freak out. I am planning on talking with Dr.Arndt tomorrow. It looks like we'll have to change up his meds, the Keppra doesn't seem to be working anymore. I'd love to go back to Topamax since that kept them away for months, but they gave him kidney stones. Don't want to make those worse. Hopefully we have a better night  tonight than last.

The Good, the Bad and the Good

Another busy week! We spent Monday in Ann Arbor seeing the metabolic specialist who thinks there is maybe a 1% chance he has a metabolic disorder. None of his labs point in that direction and physically he does not present like a child with a metabolic disorder or mitochondrial disease. Of course, there are thousands of disorders and he hasn't tested for every single one. He said if we wanted to exhaust every test there is, he would do it. But it will require more spinal taps, blood work and muscle biopsies. To be honest, I am a very Type A person. I'm a list maker, control-freak and I like to have answers. So, in most cases I would say yes - let's figure this out. But with a 1% chance, I just don't want to put my baby through any more painful tests. Besides, even if they do get an answer, there is no cure or treatment. So what's the point? So, we're going to shut the door on this for now. Should something change, his door is always open, but for now, we're done. He did do some blood work to check for chromosomal abnormalities because that is still a possibility, but that's not his speciality. If those come back abnormal, he'll refer us to the geneticists he works with.

So the meeting at U of M went well, but unfortunately Dominic had two seizures on Monday. One right before the appointment and one when we got home. I was upset, but I'm also starting to realize this is our life now. This is just something we're going to have to deal with. But it doesn't make it easier to hold him and watch him seize. They were a little different this time - he stayed conscious. I knew we were seeing Dr. Arndt on Tuesday, so I tried not to freak out too much. Below is the video of one of his seizures (ignore Mitchell, the phone ringing and our conversations in the background).



Tuesday morning our OT from Early On came out and she was thrilled with how well he's doing. He's holding his head up great on his tummy, tracks everything, brings his hands to mid line and grabs toys with BOTH hands, but he still obviously prefers the left. We got to check a few of the "goals" off the list, which always feels good. Progress!

We then had our appointment with "Dr. Wonderful" where I made him blush because I told him we call him "Dr. Wonderful". I absolutely adore this man! He is sweet, kind, thorough and very smart. He took 45 minutes to chat and answer questions. I showed him video of the seizures Dominic had the day before and he said he had simple partial seizures, as opposed to complex partial. This just means the seizure started in one part of the brain and didn't spread, which is why he stayed conscious. This is actually a good thing! Well, maybe not good, but better than a complex partial. He thought the seizures were probably caused by the slight cold he has and also the fact that he's gained two pounds since he started on Keppra. They determine the dose based on milligrams per kilogram. So, since he's gained weight, it's almost like we lowered the dose. So, we just upped the dose a little and hopefully that will keep the seizures away. I'm guessing we'll have to do this every so often as he packs on the pounds. Other than that, Dr. Arndt thought Dominic looked great. My mom came with (she really wanted to meet Dr. Wonderful) and she asked him how Dominic looked compared to most kids with IS and he said "well, to answer your question directly...Amazing!" So, that's always encouraging to hear.

Yesterday we met with the Nephrologist about his kidney stones. He does not believe, based on the number and size of the stones, that they will dissolve on their own. Great, more conflicting opinions! Not only that but he's concerned they could cause UTI's. So, he put him on Sodium Citrate and Citric Acid to prevent that. He said really there are two options - he passes the stones or we remove them. Otherwise they just sit there and could block urine in his kidneys. We go back to the Urologist in two months for another ultrasound. If they are still there and the same size, he'll remove them. In the meantime we just wait and see if they pass. That should be a fun day!

All in all, another good week. Dominic's last dose of Vigabatrin was last night, so we can cross that med off the list and pray the spasms don't return. We'll see in April what the MRI shows. Hopefully being off the Vigabatrin will improve the MRI. Despite the slight cold he has, Dominic is in good spirits. He's happy and seems to get a bit stronger each day. Every time I look at him I just praise God for miracle after miracle. He really is a miracle baby!

To Recap the Week

Overall, it was a pretty good week. We saw the Opthamologist on Wednesday and she said at this point there isn't any peripheral vision loss (from the Vigabatrin) and since he is coming off of it, that should never be an issue. However, he might need glasses in a few months. She said right now his prescription is +5 and a normal baby his age is about a +2. We'll go back in 5-6 months and if he's still at a 5+ she'll put him in glasses. It's not that he can't see, he's just a bit farsighted. So, if she doesn't put him in glasses, it can affect his development. So, we'll see what happens when we go back.

Mama and her boys

He had his BAER hearing test on Thursday and much to my surprise, it was NORMAL! With everyone's concern about his hearing, I was very surprised there wasn't some sort of impairment. But this test is very accurate and the audiologist said it was normal. He might not always respond to sounds the way he should because of his delayed development. So, this is great news to know he can hear. He's just sort of a stinker and picks and chooses who and what he listens to. I wish I could do that sometimes :o)

Friday Dominic had his occupational therapy evaluation. Mike had to take him because I thought it would be fun to come down with a horrible case of the stomach flu. That was a fun Thursday night and Friday. I'm still recovering. So, my sweet husband took the day off and took Dominic to his OT appointment. For now, they want to see him once a week in addition to the OT he gets through Early On. He will also be evaluated for physical therapy on the 28th. The goal for now is to strengthen his right side. They put some kineseo tape on his shoulder, which I'm told is sort of like a cortisone patch. It's supposed to stimulate the muscles and they'll change that once a week.

Like I said, overall a good week (minus the stomach flu). Next week is just as busy. We meet with the Metabolic specialist on Monday in Ann Arbor at U of M. Tuesday we see Dr. Arndt again and Wednesday we see the nephrologist (for the kidney stones). Hopefully we continue to get good news!