Heading Home

Thankfully, the plan is to head home today. Dominic got a head ultrasound last night that revealed the ventricles in his brain are a little asymmetrical. This doesn't necessarily mean anything, so they aren't that concerned. No brain bleeding, no masses, no stroke - so this is really good. He is much more alert today and moving around normally. Well, as normal as possible considering he is hooked up to monitors and an IV. 

Sleeping during the day, up all night

He has had high blood pressure since Wednesday, so he had more blood work and an ultrasound on his kidneys this morning. Everything structurally looked good with his kidneys, but they found that he has kidney stones. This may be the reason he has been so fussy the last couple weeks :o) We will follow-up with his pediatrician next week to see if this requires any treatment or if he has to just let them pass. Won't that be fun! 

Another EEG

They are pretty sure the seizures were caused by illness/fever, but they can't be sure. He has not had a seizure since we got here on Wednesday. They are sending us home with Diastat, which is an emergency medication, should he have another seizure that lasts more than five minutes. It's a gel that is given rectally; lucky Dominic. Again, we are hoping this is nothing new, but just related to illness. Of course, it worries Mike and I that this is something he'll always have to deal with. Are we going to land back in the ER very cold and flu season? Are we going to have to worry wherever we go? Vacations? School? We sure hope not.

Got Cereal?

A speech therapist came for a consult this afternoon regarding feeding. Mike and I weren't sure with his developmental delays and the fact that he can't hold up his head if eating solids would be a problem. Most babies his age are starting on rice cereal and baby food. I'm not all that concerned that he starts on solids at this point since he's a champ and breastfeeding. But, the therapist showed us the best way to feed him and the best positions, so this was a fun little event. He liked it for the most part. Just like his big brother, thumb went right in the mouth. 

Trying cereal for the first time

This has already been such a long road since November, the fact that he hadn't had a seizure or spasm in over a month was so encouraging. I think we felt like the worst was behind us. After talking to the neurologist this morning, it sounds like this could very well be what our life will be like for a long time. It's hard to say, everyone responds differently to meds, everyone develops differently, and the brain is so hard to understand. So, maybe he'll never have another seizure again, but chances are he will and this won't be our last stay at "Hotel DeVos". All we can do is keep moving forward and be grateful for each day he doesn't have a seizure.

Happy to hear we're heading home!

 

Isn't It Ironic?

Within five minutes of my post yesterday, Dominic had a seizure. It was a complex partial, that lasted about 30 seconds. We haven't seen these since he was first admitted around Thanksgiving. His eyes rolled back, his lip started quivering and his right arm and leg clenched up. I immediately called the Neurologist and he thought it might have had something to do with lowering his Vigabatrin the day before, although we didn't go down all that much. So, last night we went back up to his normal dose. Then, this morning, I woke up and heard Dominic breathing heavy and went to get him. He was having another seizure. This time, his eyes would roll back, then open and roll to the side and fixate. His entire right side was limp but his hand and foot would twitch every so often. He vomited twice. After 5 minutes, I called the Neurologist. I had never seen a seizure last so long. The nurse I spoke with told me to immediately call 911. They needed to send an ambulance to break the seizure right away. The ambulance and fire truck arrived pretty quickly (Mitchell was thrilled to see them in front of our house) and they checked him out. Apparently he's two young to receive the medication they would have used to stop the seizure, so they loaded him up in the ambulance and tried to start an IV (but couldn't) and we were on our way to the hospital.

He was still having the seizure when we arrived in the emergency room, so it lasted about half an hour. He seemed to go in and out of it, but it never really stopped at any point during that time. It's now 7:15 pm and we've been here since 9:30 am and he hasn't had another seizure. He had a low grade fever when we arrived here and has been having diarrhea. They think he may have a virus. Apparently if you are someone who is susceptible to seizures, any kind of virus or illness can lower your seizure threshold and you may have seizures. So, they aren't sure if the two seizures were from lowering the medication, a virus, a combination of the two, or something totally new. At this point they are monitoring him, pumping him with fluids and he will see the Neurologist tomorrow to decide what to do. He has been really sleepy and lethargic today, but I guess having a seizure for that long can take a lot out of you. It's funny being back here for the third time in 2 1/2 months, I know all the nurses and they know Dominic by name. They are all really awesome and take such good care of us. On a good note, if we have to be in here, at least we're in the new hospital this time. There is actually room for two on the pull-out bed here! Plus, the floor to ceiling windows bring in a little sunshine. We just hope to never have to see this place again.

Mike and I are hoping and praying that this is an isolated incident and that he's not developing another neurological issue. Keep the prayers coming, we really appreciate them, and we know they help. When one or more are gathered in His name, he hears. And I'm pretty sure we've got thousands of people praying. Thank you all so much!

Life is Beautiful

The past week has been amazing. Dominic has emerged as this whole new baby we've never seen before! He is laughing, giggling, kicking, and batting and holding his toys. His sleeping is a bit off. For some reason he can't get to sleep at night. Last night Mike had to take him for a ride in the car at 12:15 am. But, within a minute, he was out. He's up a lot during the night too, so I'm still not getting too much sleep. But I'm thinking as time goes on and he gets more on a schedule things will get better. He's had a couple of rough months, so I'll cut him a break.  His occupational therapist was here yesterday and could not believe he is the same baby she's seen for the last several weeks. She was so impressed by his interaction and progress. That's always a good sign! Sleeping aside, it is just incredible what a difference it makes to have a happy baby. I will never again take for granted each smile and giggle he makes.

My Boys

We head to the pediatrician tomorrow and next week Dominic has his Diagnostic BAER (hearing test) as well as another EEG. The couple weeks following he will see the neurologist, infectious diseases doctor and opthomologist again. Hopefully, if things continue to improve, the doctors appointments and lab work will start to slow down. As you can see from the photo above, he is still carrying some extra weight, although only in his face. The rest of him is pretty normal now. The neuro said it can take about a month for the swelling in his face to go down. He is also phasing out some of his meds. Now that he is off ACTH, he still stop the Zantac this week. Next week is his last week of Valganciclovir (anti-viral for the CMV) and he has also stopped Carnatine. His neuro also reduced his Vigabatrin dose yesterday as well. He still hates med time, but at least he's down from the 9 medications he was on.

Everything in general is looking up. There were a few weeks there I didn't know if I'd make it. I was consumed with fear, anger, anxiety and most of all, guilt. But now I am feeling much, much better and I am enjoying life again. Even with everything still going on with Dominic, I am happy again. Each morning I wake up and I am filled with pure joy when I realize how truly blessed I am. God has been so faithful and has carried us through some of the darkest months of our lives. He is working in our family in so many ways and I am looking forward to seeing what else he has planned for us. When I stand back and look at my life, I realize that life really is beautiful.

Progress

This will be a short entry, but wanted to share some of Dominic's progress. This is only day 4 off the steroids, but we are already seeing a different baby. His neurologist was very pleased with how he looks and how well he did on the ACTH. He said within the next couple weeks his development should take off. He's probably where he was at when the spasms started, developmentally, which is about 2 months. The chaotic brain activity from the seizures and spasms cause the brain to stop developing normally. So, now that they are under control, hopefully he'll be on his way.

Here is a video of Dominic on Monday, smiling and laughing. He has had a perpetual scowl on his face for the past 4 weeks. Now, he seems to get more social each day.




Today we played on his play mat and he started batting at toys. This is something he has NEVER done before!

We Made It

We had quite a whirlwind weekend with me flying off to Florida for my grandpa's funeral. But Mike's parents came to help watch the boys and thankfully we made the full 4 weeks on ACTH and now we're done! He has been seizure/spasm free for 3 weeks. He finished his last dose Friday and since then cannot stop smiling! He laughs, like actually belly laughs. This is something we've never seen him do before. He still seems a little out of it, but his neurologist said it can take a couple weeks for all of the steroids to make it out of his system. I couldn't believe we made it all 4 weeks without him getting sick and then he woke up yesterday with a cough and is really congested. We see the doctor today, so we'll see if it something to worry about or if he'll be able to fight it off on his own. We also made the whole treatment without some of the horrible side effects - blood pressure was getting up there, but nothing that needed treatment. His glucose levels were fine and his irritability seemed to decrease as we started the tapering process. Unfortunately, he did get HUGE, but he's already lost almost a pound, which I am assuming is water weight. His face also broke out and he has acne all over. Of course, that didn't happen until the day before he stopped the ACTH. But that is temporary and will go away. He seems so much happier and so far has been sleeping great the last couple nights. He's even napping right now! I'm hoping now that this is behind us, we can just keep moving forward. I know there is a chance of relapse or developing new seizure types, but for right now we're going full steam ahead. Our occupational therapist comes today and now that he seems a little more with it, hopefully we can start making some progress. It's incredible to me how the little things people do everyday, like smiling and laughing, can bring me so much joy.

Bring the Rain

Little Chubster

When it rains, it pours. As I've said before, each day is different. Some days are good, some days are bad. It's a constant roller coaster. Some days things roll right off me and some days the smallest thing can send me into a crying fit. The last couple days it has been "pouring". After Mitchell had a small bout the with stomach flu last week, I thought we were in the clear. I am so nervous about Dominic getting sick, that although I'm sure my sister-in-law didn't appreciate it, I was grateful Mitchell wasn't here when he was sick last week. Surprise! Sunday, Mitchell was up all night long coughing and wheezing and it seems he managed to pick up a cold/flu. Not sure how seeing that we rarely leave the house. So between Mitchell and Dominic, there wasn't much time to sleep Sunday night. He has since passed it onto me, therefore I was up a lot last night coughing. It sucks to try to take care of two kiddos when you feel like crap and want to lay in bed all day. Mike came home today and said he felt it coming on as well. I just sit and stare at Dominic waiting for him to work up a fever or start coughing. With his immune system suppressed, if he does get sick, we have to act fast.

Monday I noticed Dominic hadn't really been moving his left arm. He sort of just holds it close to his body while he flails his other arm. His nurse and OT noticed it as well. I called his neurologist and he said he noticed it at the last appointment too. So, he wants us to come back on Monday to take a look, as well as schedule another MRI to see if anything has changed in his brain. Dominic is also having a hard time eating/sucking. That sort of started when the spasms started in November, but the past few days have been worse and feeding time is terribly frustrating. It just feels like one thing on top of the other.

Working on our vision

The "rain" continued to pour when I got a phone call from my mom yesterday saying my grandfather was not doing well. He was in the hospital and things didn't look good. He was moved to Hospice today. He's 95 years old and has lived a very full and happy life with his wife, Merle by his side. I knew this time would come, but I just didn't think it would happen within months of my other grandfather passing away and in the midst of everything with Dominic. This morning I threw up my hands at God and simply asked "why"? I feel like these things just keep piling up on my shoulders and soon enough, I won't be able to carry the load anymore. I know that this is the time I most need to rely on God, but I would be lying if I said that this brings me comfort right now. While I am thrilled and praising God that Dominic's spasms have stopped, there seems to be so many other things clouding that happiness. I have to remember that God is in control and working through all of this and that he will get us through. It's during the rainy seasons in life God draws us closer to him. I just need to continue to pray and praise him in this storm, as sometimes it feels that is the only thing I can do.

This Little Light of Mine

"I'm going to let it shine. Let it shine, let it shine, let it shine. Don't let Satan blow it out, I'm gonna let it shine. Let it shine, let it shine, let it shine"

Today was a rough day for me. It shouldn't be considering Dominic has been seizure-free for 12 days. But Satan was on the prowl and I let him get me down. It all started when I came across the blog of a mother in the support group. Her child had congenital CMV which caused cerebral palsy and hearing impairment and ultimately led to Infantile Spams. This led me to the "Stop CMV" website and it was a downward spiral. I started reading about it and all of the horrible things that congenital CMV can do. So, of course I called up Dominic's Infectious Diseases doctor and started talking hysterically to him about all of this. I couldn't help but think this was all my fault and that I had given this to Dominic and if it weren't for me, he wouldn't have to go through all this. Fortunately, his doctor is great and talked me down and explained that many babies are born with congenital CMV and only 10% ever have problems. Most children that are severely affected by it have unusual ultrasounds, small heads and eyes and show symptoms at birth. He also said that Dominic would have had calcifications on his brain that would show on his CT scan, which he did not. The only thing they are a little concerned about is his hearing, but he will have the diagnostic BAER to further investigate that. At this point, no need to worry. He could have just had wax in his ear and that's why he failed the screening. So, needless to say, he calmed me down and assured me that we are doing the best thing for him by completing the 6 week anti-viral therapy. He has found that even children that were diagnosed with hearing impairment due to CMV actual improve after the anti-viral treatment. So, we're doing all the right things.

I have found since being a mother that I have a major guilt complex. I feel guilty that I don't spend enough time with Mitchell, guilty that he watches too much TV and eats too much junk, guilty that I don't hold Dominic enough. I have to get over it, I know that, but I can't help it. I want to be "supermom" and raise the perfect happy, healthy, and polite kids. So, when the thought entered my brain that I could be the reason Dominic is dealing with all this, I lost it. I let Satan take me in my weakness and I started to doubt. Fortunately, I have an amazing and strong husband who came home and prayed over me. I also have great friends that bring cookies and muffins and offer wonderful support. And I have a wonderful family who doesn't just tell me not to feel that way, but says they understand and empathize. I have acknowledged the way I feel and have decided I am not going to let Satan steal my joy. My son is getting better and that is what I have been praying for throughout the last 2 1/2 months. This is nothing short of a miracle and I need to rejoice in that. I refuse to spend another minute doubting what God is doing in Dominic's and my life. I will continue to praise God, from who all blessing flow. And as for Satan - get the hell out!