In limbo

So I thought I would write a quick entry because it seems that I only write when I have a ton of stuff to update, and by the time I'm done it's all information and not a lot of substance.

I've been thinking a lot since we got home from the hospital on Monday. What my life is going to consist of for the indefinite future. How much things can change in a short period of time. (Can you believe it hasn't even been three months since Eddy's first seizure? It feels like about three years.) How it's so easy to take things for granted when life is easy and everything is going well. How, if my life gets back to "normal" (whatever that is), can I make sure that I no longer take peace and normalcy for granted?

Eddy has been doing great since we got home from the hospital. No seizures in eleven days, his physical development is continuing to come along. He's crawling faster, pulling up and getting into a sitting position easier, and cruising along furniture more every day. He seems to have gotten used to his new seizure medication and seems to be increasingly more "with it." He's starting to make more sounds, although verbally he has a long way to go. One of the things that I'm the most scared of is Eddy being non-verbal. A lot of the genetic disorders and metabolic disorders that have seizures and developmental delays as symptoms result in non-verbal future outcomes. I know that things could be worse than that, but I really want Eddy to talk. Badly. His speech therapy was just increased to 8x/month (it was 4x/month) and I'm hoping that helps. If he just started talking, I would feel so much better about his future outcome.

I'm also really worried because, looking at past experience with Eddy, he seems to do really well after starting a new seizure medication, but a short time later, it seems to stop working and he starts having seizures consistently once again. I'm really hoping that doesn't happen with the phenobarbital, but I know it's a possibility.

I got a phone call yesterday afternoon from Cleveland Clinic. I had called the previous day asking about the results of Eddy's PET scan. A nurse called me back and said, "His PET shows mild assymetry with left temporal glucose being mildly low, possibly reflecting recent seizures." Um, what? I like to think that I'm pretty smart, or at least I can do a good google search when I don't understand something; but an hour's worth of research resulted in me having no idea what the heck the nurse was talking about and thinking Eddy might have Alzheimers Disease. (If you google that exact description, a few pages about Alzheimer's comes up.) I asked the nurse what that meant and he said, "I don't know, Dr. Gupta spoke with Dr. Weinstock and he will discuss the results with you once he receives the written report." Of course, I immediately called Dr. Weinstock's office and am currently waiting for them to call me back about the results.

If there are any doctors out there with experience in brain PET scans and can kindly explain to me the results of Eddy's scan before Monday, I would greatly appreciate it. :)

I've been a little discouraged lately because I feel like I'm chained to my house. The doctor in Cleveland said that he believes Eddy is the type of kid who will get sick easily (hence the double ear infection two weeks ago when I was trying hard to keep him healthy), and when he's sick he will get seizures. So he advised us to do what we need to to keep Eddy healthy. This basically means that I need to keep Eddy away from people who spread germs, and these people are usually little kids. And all of the places I would take Eddy to socialize (play group, the YMCA, etc.) have little kids around. I know that I will (hopefully) be less paranoid in the future, but for now I'm keeping Eddy away from as many germs as I can. And that means we are a lot more isolated than I would like to be. But this, too, shall pass I'm sure, and I just have to keep reminding myself that. It's much better to be "chained" to my spacious new house than the hospital! (It could always be worse...another thing I regularly remind myself of.)


Ed and I got a card today from the great people at Olean High School, where I taught math for two years before resigning this past year to stay home with Eddy. They included a very generous gift certificate and gas gift card. The card was signed by dozens of faculty, staff, and students I used to work with. It was so touching to know that so many people are thinking of us and praying for us. Thank you so much Olean High - you are so kind and generous and we really really appreciate it.

And thank you to everyone who has continued keeping Eddy in your prayers and thoughts. We are so lucky to have all of you in our lives.

Cleveland Clinic

So much has happened since my last post that I don't even know where to begin (and I don't have a ton of time so I'm going to attempt to consolidate.) Last Sunday, October 14, Eddy woke up and had his typical tonic/clonic seizure that he had been having around 7 am. We were obviously upset and unhappy, but we weren't surprised. He had been having this seizure every five days or so, and it had been six days since he had it last. I took him downstairs to change his diaper and give him his seizure meds, and as I was changing his diaper, he had another seizure. This absolutely terrified me because 1.) He had never had two seizures that close together before, and 2.) He was awake and all of his other seizures had been when he was sleeping. The second seizure was a tonic seizure where his arms come up and go rigid for 10-15 seconds, and his eyes kind of bug out of his head. I ran upstairs to tell Ed, and he couldn't believe he had another seizure. He came downstairs with me to help me give Eddy his medicine, and he had another tonic seizure when he was in his high chair. At this point I basically freaked out and called the neurologist on call at Children's. When I was waiting for her to call me back, Eddy had yet another seizure. She called me a few minutes later, and as I was talking to her, he had his fifth seizure. She advised me to give him Diastat, a rectal emergency seizure medicine that is supposed to stop bad seizures. She also told me to call 911 and get him to the ER as soon as possible.

We gave him the Diastat as soon as we got off the phone with her, but it did nothing, and he continued having seizures every 3 to 4 minutes. By the time the ambulance came, he had had maybe eight or nine seizures. By the time we got to the hospital, Eddy had had about twelve seizures. All of them, other than the first one, were the tonic ones where he went rigid for anywhere from 5-20 seconds.

At the hospital, he was having a seizure every 4 to 5 minutes. The ER doctor in Olean called Buffalo Children's to see what they wanted him to do, and they told him to have the pharmacy make an IV solution of some derivation of phenobarbitol (I can't remember what they said the drug was called at this point). They were hoping this would stop the seizures. We waited for the pharmacy to make it, and he continued to have seizures. Finally, they hooked it up to his IV (which took about four pokes to get in, poor kid), but he continued to have a seizure every five minutes. It took about twenty minutes of the medicine to be in his system for him to stop having seizures. I was absolutely terrified at this point, thinking that nothing would stop them. He had had TWENTY seizures in less than a three hour period!

We were waiting for Eddy to be transported to Buffalo, and they were planning on taking him by helicopter. The helicopter took off with the STAT team from Buffalo, but they had to turn around because of the weather. So we had to wait for them to get back to Children's, get the ambulance ready, and drive down to Olean. While we were waiting, Eddy had a few more short seizures. Hours later, Eddy was being taken by ambulance to Children's. When we got there, we spent several more hours waiting in the ER, and he had a couple more seizures there, making the count about 25. We were finally admitted around 6 pm, eleven hours after all this craziness ensued. When he was in his hospital room, Eddy was started on Ativan, another drug to stop seizures. He had been given so many drugs over the course of the day that he was almost completely sedated and out of it. Ed and I went to dinner to get out of the hospital and try to regain some sanity, and my parents watched Eddy. While we were at dinner, he had a few more seizures, but they were different than any he's ever had; he just went limp and his head dropped a few times. It was hard to tell if they were seizures or if they were just from him being sedated and exhausted, but he was hooked up to an EEG at this point, and it was verified that he had four seizures on the EEG. The interesting thing was that the seizures were not infantile spasms, as we thought they were, but they were focal seizures coming from one area on the left side of his brain. This is much better than infantile spasms, which are more generalized and come from deep inside the brain. Previously, Eddy's EEG showed more generalized seizures, meaning they came from both sides and not one specific area. Now it appeared that his seizure type had changed, at least the four that were caught.

In the two and a half days he was hooked up to the EEG in Buffalo, five seizures were caught (the last one being on Monday), and they were all focal. They said that actually his EEG looked better than it had previously, which was not what we were expecting after everything that had happened. He was still having abnormal waves, but the waves that were reminiscent of hypsarrythmia were gone.

To make matters more confusing, Eddy's neurologist was out of the country on a family emergency. Because we had no idea what was going on, and his neurologist was gone, we decided to just see if we could get Eddy transported to the Cleveland Clinic. We had looked into taking him there on an out-patient visit, but now we wanted him to be transported there immediately to see if they could give us some more answers. Luckily my parents had taken the entire week off of work and were at the hospital every day (Thanks mom and dad, you are amazing!), and so I was able to track down the neurologist on call and make tons of phone calls to try to make this transfer happen. I just showed up in the Neurology Clinic, which was next door to the hospital, and I asked to talk to the nurse and the doctor. The doctor on call was great, and he was supportive of the transfer. He called the neurologist on call at the Cleveland Clinic, and he agreed to accept Eddy. Then he called the insurance company and had several talks with them to convince them to approve this transfer. After all of this, the medical director denied it, saying since Eddy wasn't in the ICU, it wasn't necessary. Then, five hours after I got the call saying it was denied, I got another call from the insurance company saying it was approved. It turns out the first medical director failed to put in the paper work, and the nurse had to ask a second medical director to review Eddy's case. He, in turn, immediately approved it. It's comforting to know that something as important as this isn't at all subjective, isn't it?

So this was Wednesday afternoon, and we were told that we had to wait until Cleveland had a bed available for him to be transferred. On Thursday, Eddy had an MRI, and this came back normal once again (He had had an MRI back in August but they wanted to see if his seizures had changed his MRI at all.) Thursday afternoon we were told that we would be transferred to Cleveland the next day. Friday around noon, the STAT team came and Eddy and I were taken by ambulance to Cleveland. We were thrilled that it was finally happening, and we knew that it was a result of many prayers. We were hoping for some more answers, but we also knew that Eddy's case was very atypical, not clear-cut, and most likely would continue to be nebulous in Cleveland. Even if we could get a few more answers, though, we would be happy.

Eddy was hooked up to another EEG as soon as we got to Cleveland, on Friday afternoon. From then until now (Monday afternoon), he has had no seizures. I forgot to mention that Eddy was started on Phenobarbital on Tuesday. I was very opposed to the Phenobarb before any of this happened (it delays development, which is not what Eddy needs!), but knowing that Dr. Weinstock, Dr. Langan, and Dr. Gupta (the neurologist in Clevelend who was consulted by the other two neurologists) all agreed it could help Eddy, we decided to go for it. It has helped him up to this point, because as I just stated, he hasn't had any seizures since Monday! We're hoping it continues to help.

We have met with Dr. Ajay Gupta, a world-class neurologist here at the Cleveland Clinic, three times since we've been here, Saturday, Sunday, and today. He is very impressive, patient, knowledgeable, and has answered lots and lots of our questions. Dr. Gupta reviewed all of Eddy's records and looked at his EEG from this visit. Let me attempt to summarize everything he's said...

Eddy is an atypical case, but he said he is atypical in a good way. He does not think Eddy has infantile spasms right now (probably the best news we heard from this whole trip!!) The brain waves that were reminiscent of hypsarrythmia are gone, and his EEG actually looks pretty good right now. He said that Eddy still has some slow waves on the left side, but his EEG looks better than it did. This could be a result of the phenobarb or it could be his brain maturing or it could be his seizures changing. His EEG has changed so much already that I know not to get too optimistic because a new medicine can clean up the EEG, but after he gets used to it, the next EEG can look worse once again. He said that Eddy definitely has epilepsy, and epilepsy is always very unpredictable. Even if two kids have the same seizure disorder and similar EEGs, their prognosis and outlook can be completely different.

Since Ed and I are numbers people, we appreciated that Dr. Gupta gave us some percentages. He said that Eddy had a 33% chance of outgrowing the seizures when he gets older. That's the best case scenario and the one we are really hoping for. He said that Eddy had a 33% chance of having a disorder that causes epilepsy for his entire life. One possibility is Dravet Syndrome, which is a genetic disorder that causes seizures and developmental and cognitive delays. It is a spectrum disorder, so even if he has it, there's no way of knowing where he will be developmentally in ten years. This is obviously something we're hoping he doesn't have. They did the test in Buffalo on October 5, and they said it can take six to eight weeks for the results to come back (Only two facilities in the country do the test for Dravet.)

Dr. Gupta ordered a PET Scan, which Eddy had this morning, to see if he has cortical dysplasia or some other abnormality with his brain that is so small that it wasn't found on the MRIs. The reason he did this is because Eddy's seizures are now coming from one spot on the left side of his brain, and this could be caused by cortical dysplasia.

We are about to be discharged from the Cleveland Clinic so I'm running out of time, but I wanted to update everyone who has been asking. Although we still don't know exactly where Eddy will be or what will happen with him, this has been a beneficial trip. We understand now that Eddy's epilepsy could go in any direction, and we're hoping that with the right combination of drugs, we will be able to control it (and hopefully he will outgrow it). So now we are waiting on the results of the PET scan, which we should hear something about in a couple of days, and the Dravet test, which we should hear something about in four or five weeks. Thank you so much for all of your prayers and encouraging words.

Waiting...Again.

If God appeared to me right now, I think I would say, "Wow, God, I don't understand why you're letting this happen and how any this can be Your will."

Since my last post almost a week ago, we increased Eddy's Keppra and waited to see what would happen. Well, Eddy had another seizure Monday afternoon during his nap, and it was the same as the previous two seizures - a spasm that turned into a tonic seizure (he goes rigid), then it turns into a tonic/clonic seizure (starts shaking after he goes rigid). I called Dr. Weinstock, his neurologist, and he said that we needed to start him on a treatment, and he recommended prednisolone. This is a steroid, similar to ACTH but not as harsh. It is administered orally, as opposed to having to give Eddy a shot every day. It also suppresses the immune system, but not quite as bad as ACTH does. It still has quite a few bad side effects, but we were happy to have finally made a decision. He called in the prednisolone, we picked it up, and we were ready to start it on Wednesday.

Then Wednesday morning at 2 am, Eddy woke up with a horrible runny nose and cough. If you have read my previous blog posts, you may be thinking "Hmm, am I sensing some déjà vu? This is sounding familiar." Yes; the last time we were going to start a treatment (ACTH), Ed got sick right before we were going to start it. The funny thing is, Ed (my husband) never gets sick, and Eddy hasn't been sick in months (Other than having seizures).

So I called Dr. Weinstock's office again yesterday morning, and he agreed that we need to wait until Eddy is better to start the prednisolone. His immune system, since it will be suppressed, has to be in top condition whenever we start the steroid.

Is God trying to tell us something?? Isn't this a little coincidental?? Both times we were going to start a treatment, someone gets sick right before and we have to wait.

So Eddy was still sick this morning, and his cough had gotten worse. Also, he developed a rash on his face. I took him to his pediatrician this afternoon, and it turns out Eddy has a double ear infection and eczema! And on top of that, his bottom molars are coming in! I just don't understand how God can let all of this happen to our poor little boy. It seems like everything is hitting him at the same time, and our typically sweet, happy baby is absolutely miserable. Which means, as all you parents out there know, that his mommy and daddy are not exactly the happiest of campers either.

Now that we are forced to wait again, I decided to try to make this a productive waiting game and look for a second opinion to see if we can find someone who has seen a case like this before. Initially, we just wanted to get Eddy started on a treatment to make him better and didn't want to take the time to get into another doctor. But now we decided a second opinion might be a good idea.

Don't get me wrong, I respect Dr. Weinstock tremendously. He is a great neurologist, and he definitely has Eddy's best interest in mind. But Buffalo Children's, comparatively, is a small hospital and doesn't even rank in the top fifty of the US News and World Reports Pediatric Neurology programs. So I contacted the #1 rated program (Boston Children's Hospital) and the #3 program (Cleveland Clinic). We are going to send Eddy's records to both facilities, and ideally we would like a second opinion over the phone (especially from Boston). We would be willing to travel to Cleveland (actually we would be willing to travel anywhere, if it could help Eddy) because Cleveland is only 3 and a half hours away. I spent some time today researching the Pediatric Epilepsy Center at Cleveland Clinic and I am very impressed. Their technology and experience is top-of-the-line, and I am encouraged by the thought of someone there potentially having seen a case like Eddy's before and knowing what to do for him.

So that's where we're at. I think that, now, the waiting is the hardest part. Even harder than watching Eddy have seizures. I know that he is going to have seizures until we figure out the best course of treatment for him, and I just want to have that information now.

I don't want to sound ungrateful, or negative, because I know how lucky I am to even have this little boy in my life. And I'm so fortunate to have my husband, and my family, and friends, and everything that God has given us. So many people care about Eddy, and us, and it's so comforting to know that. Please continue to pray for us, especially that God will lead us in the right direction for a doctor and a treatment that will help cure Eddy. Thanks so much <3.

The Rollercoaster Continues

Well we just got home from our latest hospital trip, this time for a 48 hour EEG, and I thought I would give an update about what's going on. Everything is just as confusing as it's been for the past two months! Nothing is clear-cut with this little boy! As you know, last week, we got good news that Eddy's spasms had basically gone away...or he didn't have any during the 24 hours he was hooked up to the monitors. Four weeks ago was the first time we were told Eddy had infantile spasms, but even then we were told that he was "atypical." He didn't have the spasms in clusters, which is typical for infantile spasms, and he only had them when he was sleeping. In addition, he only had a few of them, maybe five. (A lot of babies have lots of spasms a day, sometimes into the hundreds.) Also, the spasms turned into tonic seizures, which isn't the typical "passway" of seizures. (Normally a baby would have a spasm, have another spasm, have another spasm, etc. Eddy would start with a short spasm, but it was turning ino a tonic seizure, where his arms went rigid for 5-10 seconds.) So, four weeks ago, we were all set to start ACTH, a horrible steroid treatment that is recommeded first a lot of the time for infantile spasms because it has the highest success rate of making everything go away. Then Ed got sick and we decided to wait a couple of weeks and see if Eddy was still going to need ACTH.

Then Eddy seemed to be doing better, not having a seizure for two and a half weeks. And his development was improving by leaps and bounds. But then, about two weeks ago, he started having seizures again. He had three last week, and he had a bad one last Saturday. He had another one Wednesday night when he was hooked up to the monitors (which is actually a good thing, if he's going to have them, it's better that it's when he's hooked up to the EEG). The one Wednesday was the exact same as the one last Saturday - his arms came up like a spasm, then went rigid (tonic seizure), then he started shaking and his eyes rolled (tonic/clonic, or grand mal seizure). So, Dr. Weinstock was very worried yesterday morning when he spoke with us, because the spasms were back, and one of the two turned into a grand mal seizure. He said that we had to start a treatment, and we had to decide by today what that treatment would be. He recommended ACTH again but said we could also try prednisolone (a steroid similar to ACTH but not as harsh) or vigabatrin (which can cause irreversible damage to your eyes). So all day yesterday we discussed each treatment and tried to decide what to do. We were leaning towards ACTH, but were waiting to talk to Dr. Weinstock again this morning, after he reviewed Eddy's EEG from last night.

So this morning, Dr. Weinstock came in the room and said that Eddy didn't have any spasms or seizure activity last night. He stated once again that Eddy is very atypical, and he does not fit into any "standard case." He said that, a few weeks ago, Eddy had him very very worried about the spasms and seizures, and he knew we had to start a treatment. Then Eddy seemed to get better and he felt good about his progress. Last week, he seemed more optimistic about Eddy's EEG. Then yesterday he was again very worried because of the seizures and spasms, and he knew we had to start a treatment. But today he said that Eddy didn't have any seizure activity during the night, and so we can hold off for now. We are just going to increase Eddy's Keppra to the max dosage and see if that does anything to stop the seizures he's still having. It's such a rollercoaster!!

I guess the bottom line is that Eddy is a very special little boy who is not going to fit into any mold! On the one hand, we are very happy that we don't have to be in the hospital all week next week and put Eddy through the horrible treatment of ACTH. On the other hand, Eddy is still having the weird, abnormal EEG brain waves when he sleeps...and he's still having seizures...so chances are, the spasms are going to come back, and we might end up having to do one of the three above-mentioned treatments after all. Everything is just so up in the air right now, and we have to constantly be on our toes. I feel like I should just get a device that attaches from my head to the video monitor so I don't have to keep carrying it around. I probably look at it every ten seconds when I'm awake, and every fifteen minutes during the night. Occasionally, I'll sleep for an hour or two, but I'll wake up terrified that I missed something. I know that this won't be the case forever (well I'm hoping it's not!), so I just have to be strong and alert for right now. And tomorrow my fabulous parents are spending the night and taking the video monitor for me once again so I can get some sleep. (Thanks mom and dad, you are the best!!)

I wish you all could have seen Eddy when we got home this afternoon. He was so happy that he was finally able to move around that he just crawled around in big circles, playing with his toys, for a half hour. It was adorable. I was worried that not being able to practice any of his new skills for the last couple days might hurt his development, but he was crawling faster than I've ever seen him and pulling up on the couch like a champ. So there are lots of positive, encouraging things going on with Eddy, and these are the things I need to focus on.

Another positive is that my wonderful husband made my birthday very special with roses, playing our wedding song, and treating me to a great birthday dinner at the Hostaga Restaurant in Olean. It was the perfect, relaxing end to a stressful week, and it gave us a refreshed, new outlook on everything.

Thanks for the prayers and birthday wishes - you are great friends and family and I really appreciate you all!

Hope, results, discouragement, and thankfulness

It’s amazing how much your outlook can change in a few days.  Three days ago, Ed and I were upset, scared, nervous, pessimistic…take any negative adjective and we were pretty much feeling it.  After having the two seizures last Saturday morning, Eddy started getting very twitchy in his sleep. He tossed and turned all throughout the night on Tuesday and Wednesday, jerking, twitching, doing his “startle reflex" about fifty times, and Ed and I were very worried that the infantile spasms had gotten worse. He also had another short 10-15 second seizure Thursday morning after moving around literally the entire night. His neurologist had told us (when we called last Saturday to tell him about the two seizures Eddy had) to let him know if he had any more episodes or “bad nights,” and we would move up his EEG.  So Thursday at 9 am, as soon as the pediatric neurology office opened, I called and (of course) started crying to the nurse I spoke with. She was very kind and empathetic, and when we got off the phone she told me to hang tight and she would call me right back.

45 minutes later the nurse called back and said, “I got you a bed in the long-term monitoring unit, get here as soon as you can.” I answered, “Today??” I was hoping to get the EEG moved from next Wednesday to Sunday and I wasn’t even considering the possibility of getting in that day. She said, “Yes, today, I pulled some strings to get Eddy in here, so please tell me you can make it!” She said that he would be hooked up to the EEG as soon as we got there and monitored until 10 am the next day (Friday). Depending on the results of the EEG, either we would leave then, or he would be admitted and started on ACTH. (So she instructed us to pack for at least four or five days.) I called my dad, who was just leaving a dentist appointment, and he came over and watched Eddy while I packed. We were out the door within half an hour, picked up my mom from her work, and were up to Buffalo Children’s within two hours. Everyone in the Epilepsy Monitoring Unit greeted us when we walked in and said, “Your room is right there.” We didn’t even need to tell them his name; they know us by now.

Because Eddy has had three seizures and lots of (what appeared to be) spasms in the past week, we were really worried and preparing for the worst. We knew that three weeks prior, Eddy had had infantile spasms and what was “reminiscent of hypsarrhythmia” (the chaotic brain waves that show infantile spasms are present and eventually cause mental retardation if it can’t be stopped). We also knew that the Klonopin that they started Eddy on did not cure infantile spasms or hypsarrhythmia. So we were betting that Eddy would be starting ACTH.

At 10 am Friday morning, I was a nervous wreck. Ed had to teach so my parents drove up in the morning to be there when we got the news. Around 11 am, the pediatric neurologist on call came in and told us that the EEG showed some abnormal brain activity, but it didn’t look like infantile spasms!! When Eddy is hooked up to the EEG, we are supposed to press this button every time we think he’s having a seizure or a spasm. I pressed it about ten times when he was sleeping, and it turns out that none of his crazy jerky movements or startle reflexes were spasms. This was amazing news. The fact that he had infantile spasms three weeks ago and didn’t have them now was incredible. Infantile spasms don’t just go away, and the fact that they are better without anything more than Klonopin is truly a miracle. Ed and I were bracing ourselves for the worst and planning on staying in the hospital all week. We couldn’t believe it when we heard his spasms were better.

When my parents and I were celebrating about the infantile spasms news, the doctor reminded us  once again that Eddy does have ”high-voltage”, abnormal brain wave spikes, and they don’t know what they are. This is not good news, but considering what we thought the outcome would be, we were still going to celebrate. The strange thing is that every time Eddy had an abnormal spike on the EEG, he was completely still and sleeping. When I asked about all the twitches and startle reflexes, she said that it was “normal baby movements.” It’s definitely not normal, but I’m not going to argue if it isn’t infantile spasms!

When we asked about the next step, she said that he should come back in Sunday for a longer EEG, from Sunday to maybe even Friday. They would take Eddy off of his seizure meds to see if they can figure out something more about these abnormal brain wave spikes. The thought of our 14 month old, who is now constantly on the move, hooked up to the EEG and unable to move for five nights was not something we were looking forward to, but we were prepared to do it if it could help Eddy.

A few minutes after the neurologist on call left, Dr. Weinstock, Eddy’s neurologist, came in and said basically the same thing that the previous doctor said - Eddy’s EEG looked better than it had three weeks ago, he doesn’t have any hypsarrhythmia or infantile spasms, but he does still have some abnormal brain waves/spikes, and they aren’t entirely sure what they are. He did say that we aren’t out of the woods yet in terms of the infantile spasms, because they could come back, but right now the spasms are gone. His approach for the next step was a bit different than the other doctor’s, though. He said that we can keep our long-term EEG appointment next Wednesday, and he doesn’t want to take Eddy off of his medications for the EEG. He said that the medicine is starting to control the seizures, he knows that if we take Eddy off the medicine he will have lots of seizures, and he doesn’t think that this will be worth it to potentially find out what the abnormal brain waves are. I understand the viewpoints of both doctors, and I respect Dr. Weinstock tremendously, so we decided to go ahead with the EEG on Wednesday, with Eddy remaining on his medication. Having a longer, 48-hour EEG will hopefully shed some more light on what is going on with Eddy’s brain waves. The EEG will be over Friday, which is my birthday, so I’m hoping for a birthday present of more good news and no infantile spasms!

We received another piece of good news on Thursday evening while at Children’s. Dr. Robinson, the genetics doctor, called me and said that Eddy’s microarray came back normal, which means that he probably doesn’t have a genetic disorder!!!! I cannot tell you how relieved I was to hear this news! As you know if you read my previous entry, I had completely convinced myself that Eddy had a genetic disorder. In fact, I think I had convinced several people, including my mom, that Eddy had a genetic disorder.  So this news was so great to hear! In addition to being relieved about Eddy, we were also very relieved because we want to have more children. Now we don’t have to worry as much when we are ready to go ahead planning for another child. I cannot tell you what a relief this is. (Yes, I know, “relief” is overused in this paragraph, but there isn’t a synonym that adequately describes what we felt!)

I really feel that God is present, and has been present the whole time, in this situation. Even when I was sad and scared and mad at God a few days ago (for “not answering my prayers!”), I still felt that He was with us, and that He was in control. This situation has made me appreciate everything I have a lot more than I used to. It’s easy to take things for granted when everything is going well.  

As I wrote that last sentence a few hours ago, I looked at the baby monitor (Eddy was taking an afternoon nap), and I saw an odd, rigid arm movement. I ran upstairs and saw that he was having a grand mal seizure that lasted somewhere between two and three minutes. Thank God I looked at the monitor right at that instant. I do still feel that God is in control despite everything. I may not understand why He is making us go through it, but I do believe that He is in control.

So…to come to some kind of end here, I’m going to go back to where I started this entry. “It’s amazing how much your outlook can change in a few days.” Or a few hours. Or a few minutes. I started this blog feeling hopeful, and currently I’m feeling discouraged. But I know that I will feel hopeful again, hopefully soon (ha, pun intended.) I just have to accept that this is a rollercoaster, know that Eddy has great doctors, have faith, and be grateful for all of the wonderful things that we do have. We have so many great people in our lives, and we are so thankful for all of your support (I can't reiterate this enough - thank you!!)

Eddy is such a tremendous blessing and inspiration for us, and no matter what happens, we are so lucky to have him in our lives.

A few things I was just thinking of while putting Eddy to sleep...

Am I ever going to sleep again? I mean, really sleep. Not for fifteen minutes to an hour at a time. My nights are spent fluctuating between all-consuming worry, where I constantly stare at the baby video monitor to see if he is moving, to trying to put all of my trust in God and let him take the worry instead of me (although with the latter, I still tend to stare at the baby monitor, albeit not quite as often.) I have never been much of a worrier so this is new to me...and I don't like it. I was feeling so much better about everything, then Eddy had another seizure.

It had been 17 marvelous, seizure-free days, and we were getting pretty optimistic (although I was trying not to get my hopes up.) Then, early Saturday morning, around 4 am, he had a short grand mal/tonic seizure (not sure which one - his body went rigid and his eyes rolled back but he didn't shake and it only lasted 15 seconds.) Then, an hour later while I was rocking him, he had another quick 10-15 second seizure. He had been acting weird since he woke up at midnight, a lot of twitching and startling (which very well could have been infantile spasms...we never know when he is actually having them.) So, I wasn't surprised when he had the seizures, just disappointed. I don't know how much longer Ed and I can handle all of this. I know they say that "God doesn't give you anything you can't handle" so I'm assuming God is under the impression we can handle this...but not much more, God. Please make Eddy better asap.

On a positive note, there are a lot of great things going on with Eddy. His development is seriously improving at a faster rate than I have ever seen it improve. He started crawling this week! One day he could only take one "step" on his hands and knees, the next day it was two, and all of a sudden he is legit crawling! Also, he is pulling up on EVERYTHING. Last night I looked at the baby monitor after hearing a little rustling, and I see Eddy STANDING UP in his crib! That was a shocker. The only problem is that he doesn't know how to get down from standing up yet, so I took off running towards his room. When I get there, I see a smiling baby who had just (fortunately) landed on his soft blanket, not the side of his wooden crib. Then around 3 am, I look at the monitor, and I see a baby standing up once again. He's definitely practicing this new-found skill at every chance he can get. He is also clapping all the time now, and it's so incredibly cute. I love that when a baby discovers something new, they do it over and over and over again.

I think the scariest thing of all of this is that the future is so much "up in the air" right now. Ed and I are planners. And we have been very lucky in that everything has worked out perfectly for us up to this point. We had a perfect "courtship" (Do they even use that word anymore??) for three years. We had a perfect wedding when I was 24 and he was 28.  We had a perfect three years of traveling to exotic places, enjoying married life, having successful careers, and then we had a baby. I always wanted a baby when I was 27 and I had Eddy when I was 27. Ed and I have always been hard workers, but we have also been very fortunate too. Everything has worked out exactly as we wanted it to. So now, with not knowing what the future holds for Eddy and for us, it's scary. Really scary. I know that we will handle whatever is given to us, but not knowing whether Eddy will be "ok" or not is really hard.

But, when I get scared (and it's quite often), I think of all of the amazing people that we have in our lives, and it makes me feel better. Our families and friends have been so supportive and kind. My parents have gone above and beyond the call of parenting and grandparenting duties. They were at the hospital in Buffalo every day. They stayed at my house for two days after we got home because Ed was sick and couldn't be here. They are always offering to watch Eddy and give us a break. Thank you mom and dad for being the best parents and grandparents in the world!

And thank you to everyone reading this, and supporting us, and for all of your kind words and prayers.  Please continue praying because the next two weeks are going to be huge for us. This week we find out the results of Eddy’s genetic testing, and next week, he has his long-term EEG, which will tell us how his infantile spasms are doing. We really, really appreciate your support and prayers.

A little more background about Eddy

One thing that I did not mention in the previous post is that Eddy has a developmental delay. It isn't severe as far as some developmental delays go, but it is important to note because this makes his "seizure disorder" all the more worrisome. Also, it doesn't really make any sense, in that there was nothing really "out of the ordinary" about my pregnancy, birth, or the beginning of Eddy's life.

Eddy was full-term, actually born on my due date. The birth was easy (And by "easy" I mean not easy at all, but as far as birthing goes, I'm told that pushing for twenty minutes for baby #1 is not a "difficult" labor.) We were out of the hospital a day and a half after giving birth, Eddy was a good eater (although not a good breast feeder), he smiled within the "normal" time frame, he rolled over when he was "supposed to." It wasn't until he was six months old that we started getting concerned because he wasn't close to sitting up on his own yet. Everyone told us the typical "every baby is different, don't worry, he'll get there" thing, which is probably what I would tell someone also...but then seven months came and Eddy still wasn't sitting up, eight months came, and he wasn't sitting up or babbling. Finally at nine months, Eddy was able to sit up independently, but by this time we were super worried. He also wasn't babbling or imitating and physically the only thing he could do was roll around and sit up if he was put in a sitting position. At his nine month check-up I voiced my concerns to his pediatrician, and he said he was also concerned and referred us to Early Intervention. Eddy was evaluated when he was almost ten months old, and it was determined that he qualified for physical, occupational, and speech therapy. Therapy started a couple weeks later (physical therapy twice a week and speech and occupational therapy once a week), and Eddy started slowly progressing. All of his therapists agreed Eddy was "bright" and quite unique, in that it didn't make any sense that he was delayed. He had a stay-at-home mom who worked with him constantly, both of his parents were at the top of their classes academically...Eddy "should be" really smart.

The general consensus was that, with a little therapy, Eddy would "catch up" in his own time frame. They also thought he might have some sensory issues because he wouldn't drink anything cold (including water, until he was about twelve months old!), he wouldn't sit in the grass without freaking out because he didn't like the way it felt, and he didn’t like touching any "slimy" foods like cooked apples or carrots. His demeanor, though, was great, as long as he didn't have to do anything he didn't want to do (which probably applies to 99% of babies, right?). We could take him out to a restaurant and he would sit quietly playing with his toys, smiling at everyone who talked to him. His personality is very sweet, chill, friendly, and social. So, even though he was "delayed" and we were worried, we were enjoying our boy and were optimistic that he would catch up with therapy.

But then, the day before his first birthday, he had a seizure. And the first thing I thought of after "Oh my gosh, he's having a seizure" was "There is something wrong...and it's much bigger than a delay." When we talked to the neurologist and said that Eddy was developmentally delayed, he became much more concerned about the seizure. If you have a delay AND a seizure disorder, there is a good chance that something major is causing it. The three "main areas" that would cause the problem are neurological (something is wrong with the brain), metabolic (I'm not going to pretend to understand metabolic disorders), and genetic (birth defects/something you're born with). After getting a normal MRI, we were able to cancel out any "neurological" underlying causes, for the most part. After getting the normal metabolic bloodwork results, we were able to scratch the "metabolic disorders" off the list (again, for the most part...there's always some strange, rare thing they could miss with the basic tests.) So then, we were left with a genetic cause. And I did tons of research and completely convinced myself that Eddy has a genetic disorder. I was a wreck and couldn't sleep or eat or do anything for a week straight because I was SURE that Eddy had a genetic disorder (The only positive thing that came from all of this is that I lost ten pounds and could finally fit back into all of my old clothes. Probably not the healthiest way to go about it, but I'll take it nonetheless. )

I called the pediatric neurology office (again) to see if they could refer us to genetics, and they did, but we weren't able to get an appointment until November. This was not going to be good enough for me. So, in our many hospital visits, I asked every single doctor I talked to (and there were several!) if they could help move up our genetics appointment. (One thing I've discovered throughout this experience is that there is ALWAYS an earlier appointment, if you're persistent enough.) Almost all of them said, “Sorry, can’t help you with that, not my department,” but one, nice young female resident said, “I’ll call genetics, give them your story, and see what I can do.” We were discharged from the hospital that day so I wasn’t sure if it would go anywhere, but I was just happy she tried.

The following week, when we were back in the hospital, I asked yet another doctor, this time the pediatric neurologist on call, Dr. Langan.  Immediately he said, “Sure, we’ll call genetics and have them come see you here in the hospital on Monday for a consultation.” (I knew it was that easy if we found the right guy!) But we left the hospital Saturday due to my husband getting sick, and we were back to square one for the genetics appointment. Finally, last week, I tried calling the genetics office again, and I left a message (in which I may have started crying.) Well, an hour later I got a phone call back from the genetics secretary who said, “Can you come in tomorrow?”  and of course I answered, “Yes!”

So the genetics appointment was last Thursday. During the appointment we finally got the results of Eddy’s Fragile X test (from about 4-5 weeks earlier) back, and luckily this was negative. They took more bloodwork from Eddy for a DNA microarray, which will basically determine if he has a genetic disorder or not. The genetics doctor, Dr. Robinson, was very helpful and kind, and he is going to personally call us next week to give us the results of the test. So right now we are anxiously and very nervously waiting for these results.

Something strangely positive has been happening since Eddy started getting seizures – his development has improved by leaps and bounds. In the past month, he has started army crawling like a champ and can now easily get anywhere. He is much better at transitioning from sitting to on his tummy, and has gotten himself to a sitting position independently on several occasions (and is sooo close on every other occasion). He is making much more sounds, and has said “mama” a few times! I swear he also said “up” but my husband doesn’t believe me on that one.

In the past week and a half alone (since we got home from the hospital and he started the Klonopin), Eddy’s development has made the biggest strides yet. Last week, I saw Eddy army crawling towards the couch like he was on a mission. I ran in the other room to grab my camera, and by the time I got back to the living room, Eddy was standing up at the couch by himself! He had never even expressed interest in pulling himself to stand, so I was crying (this time happy tears!) and throwing him up in the air. He probably thought his mommy went crazy.

Also, he has started to crawl on his hands and knees!  He can only get a few “steps” as of now, but last week he wasn’t even trying to! Another great accomplishment is that yesterday he started clapping, something we have been trying to teach him for 6 months now! I don’t know if it’s the Klonopin, the Keppra, just the normal time-frame of his development, God answering our prayers, or all of the above, but we are definitely uplifted and encouraged. I really do believe that God is part of this experience, and I know that through Him all things are possible. God has given us the gift of an amazing little boy who has already taught us so much. No matter what the future holds with Eddy, we will continue to love, encourage, guide, and support him in everything he does.