We have another busy week of appointments - Opthamologist tomorrow, Diagnostic BAER (hearing test) on Thursday and his OT evaluation on Friday. I am grateful to my Mom and Dad who are taking Mitchell for the next few nights. This gives me a much needed break from the constant craziness that comes with a 2 year old, and also gives me a chance to focus on Dominic at all of his appointments. Most importantly this week is his BAER. He needs to be sedated, so he'll have to fast, again. But this will give us an exact diagnosis regarding his hearing. We'll know if and how much impairment he has. I'm not looking forward to it, but I'm anxious to get it over with. His OT evaluation on Friday will determine how many days/hours per week he'll get occupational therapy through Spectrum, in addition to his Early On therapy. His PT evaluation is in a couple weeks, so once that's done, we'll have a set schedule of days/times.
On a good note, Dominic is doing GREAT! He is such a happy little chub and is getting stronger every day. He is working on rolling over and better head control. He is much stronger and is getting much better at using his right hand. He still prefers the left, but the doctor said this is good. What would be bad is if he didn't use either. We just started putting him in the jumparoo last week. I wasn't sure how it would go, as he hadn't been putting weight on his legs up until two days ago. But he LOVES it! I thought it would give him a different perspective and get him off his back, plus it might encourage him to use his legs. It worked :o) Check out the video below.
He is just doing so well and I am just so happy and grateful. To be honest, I wasn't sure I'd see this day. I see a lot of posts and get a lot of emails from Mom's of kid with IS who are 15-16 months old and can't hold their head up and have feeding tubes. I feel incredibly blessed that Dominic is thriving and is such a happy guy. Again, who knows the future, we may have many more obstacles to face, but to see him progress each day gives me so much hope.
Tuesday, March 15, 2011
Tuesday, March 8, 2011
Dr. Wonderful and Dr. Rock Star
I feel incredibly blessed to have these two men in my life. And by these two men, I mean Dr. Wonderful (aka Dr. Arndt) and Dr. Rock Star (aka Dr. Chugani). It has been very clear to me that God has placed these people in our lives for a reason.
On Friday, I had to stop in the neurology clinic to pick up Dominic's medical records and all his scans for our appointment with Dr. Chugani. When Dr. Arndt found out I was there, he asked to speak with me. The first thing I thought was "oh no, now what?" But he just wanted to chat with me to see how I was doing, see Dominic and talk through any concerns or questions. He also gave me a copy of the study done on Vigabatrin and MRI abnormalities. He actually presented Dominic's case at a neurology conference on Friday in reference to the stroke/Vigabatrin/MRI abnormalities. He spent a good half an hour answering questions, apologizing for what an emotional roller coaster this has all been for all of us and told me that from now on, everything can go through him. So, if we end up back in the hospital for something, the Dr. on call can contact him, no matter when or what time, to let him know what is going on. Hopefully this can prevent any more confusion and conflicting opinions. Every time I talk with him I feel encouraged and hopeful. Even if the news he gives isn't the greatest, he never leaves me hanging and he is determined to find answers. He calls me back personally and makes time to meet with me. I so appreciate his honesty, expertise and genuine care for Dominic. It is so obvious to me that God placed him in our lives. He just moved to Grand Rapids 2 months before Dominic was first hospitalized. What timing! He has just made this entire process more bearable and hopeful. He is just so wonderful, hence the name Dr. Wonderful!
Yesterday I got to meet the "rock star" of the neurology world, Dr. Chugani. He is fabulous. Not only does he know his stuff - he actually coined the phrase "cortical dysplasia", which is the condition Dominic has (where one side of the brain is malformed) and invented the PET scan (which Dominic will have this summer) - but he is also incredibly down to earth and kind. He even gave me is email address and said any time I needed anything or had questions, to shoot him an email. Not many doctors do that!
But, now onto what he actually had to say about Dominic - first of all, he thought he looked great. Dominic was smiling, giggling, moving around, and tracking. He does not think Dominic had a stroke, he believes it's swelling in the brain. This could be caused from the seizures or possibly Vigabatrin as Dr. Arndt suggested. He does not think he has a metabolic disorder or Mitochondrial disease, but is glad we are seeing the metabolic specialist of U of M in two weeks, just to rule it out as a possibility. He does not believe the spasms will come back (yeah!). Obviously he can't say for sure, but in his opinion, he thinks he's done with them. The man has seen over 500 kids with IS and written a book about it, so I trust his opinion. After looking at his MRI, he definitely says Dominic has cortical dysplasia and attributes the IS, complex partial seizures and weakness on his right side to the malformation of one side of his brain. Should Dominic continue to have complex partials on a regular basis or should the spasms return, Dominic WOULD BE a candidate for surgery. Now, this sounds like it would be a bad thing, but actually, this is GREAT news! A hemispherectomy (where they remove a hemisphere of the brain) is only considered for patients (usually children) who have severe epilepsy with seizures arising from only one side of the brain. It is performed only if that hemisphere is already functioning very poorly, so the patient loses little or no additional function.We are hoping and praying it will not come to this and his seizures and spasms will continue to be controlled through medication, but how great is it to know that if the meds fail, surgery could correct the problem. He told me he has evaluated a lot of kids where the seizure activity is in both sides of the brain. Unfortunalty, there is nothing that can be done and he has to turn them away. I can't imagine what it would be like being told there is nothing that can be done and my child will continue to seize indefinitely. As my mother-in-law said yesterday, it's those families we really need to pray for.
Dr. Chugani is concerned about his hearing, Dominic didn't really seem to respond when he checked it. So, he said the BAER test we have next week is a must. He said he will probably always have weakness on his right side, but PT and OT should help. What we really need to focus on over the next several months is his development. If he continues to improve and develop, that would be great. But if his development lags and he falls farther and farther behind, surgery would be considered. While seizures are bad, they aren't the only indication that something is wrong in his brain. Some kids can continue to have seizures but develop just fine and other kids stop having seizures but their development lags. So, we need to keep an eye on both.
Dr. Chugani wants to do an MRI at his office in a month or two because he uses a special technique - MRI with DTI, which is a specialized MRI that evaluates neural pathways within the brain, brain stem, or spine, such as motor-skill controls and speech. He then wants him to have PET scan this summer. A PET (or positron emission tomography) is a medical imaging technology that images the biology of disorders at the molecular level before anatomical changes are visible. It gives information about the body's chemistry that is not available with other imaging techniques and reveals metabolic information (as opposed to anatomical information). He thinks Dominic is still a little young at this point as his brain is still developing and he's not currently having seizures. So, we'll head back there for both of those and then a follow-up appointment in September.
Overall, the appointment went very well and he seems to think Dominic will do great. We'll keep an eye on things, continue with meds and see him in a couple months. I couldn't have asked for things to have gone better. I have seen over the past few months how God has put certain people in our lives. I have the most amazing husband who has been my rock through all of this. My Mitchell who has been such a great big brother and champ for going to all the hospital and doctor visits. And for Dominic, who has been an amazing trouper and taught me so much about strength, resilience, overcoming the odds and unconditional love. Despite all he's been through, he remains the happiest baby I've ever seen. From our friends and family who have continued to support us with prayers, cards, emails, babysitting, meals, house cleaning; to all of the specialists Dominic has seen - neurologist, infectious diseases, urology, nephrology, opthomology, metabolic specialist, and occupational and physical therapists. Of all of the specialists, most importantly has been Dr. Arndt. We would not be here today or have seen all the specialists we have, without him. He has taken such a special interest in Dominic and I am so grateful to him and to God for placing him in our lives. While I would have never asked for everything we've been through over the past several months, God has used this experience to reveal so many blessings to us and I could not be more grateful. I guess I got my second miracle after all! Praise God!
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| Dominic's MRI showing Cortical Dysplasia |
Yesterday I got to meet the "rock star" of the neurology world, Dr. Chugani. He is fabulous. Not only does he know his stuff - he actually coined the phrase "cortical dysplasia", which is the condition Dominic has (where one side of the brain is malformed) and invented the PET scan (which Dominic will have this summer) - but he is also incredibly down to earth and kind. He even gave me is email address and said any time I needed anything or had questions, to shoot him an email. Not many doctors do that!
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| A very happy 5 month old |
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| MRI with DTI |
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| CT vs. PET |
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| My little miracle |
Thursday, March 3, 2011
He Said, He Said
The emotional roller coaster continues. We don't really have any answers yet, but I did speak with Dominic's neurologist on Monday and his opinion of what is going on is a little different than the neurologist's we saw on Saturday. There is still a good possibility that Dominic had an Ischemic stroke, based on the MRI results. However, Dr. Arndt believes that if Dominic sustained the amount of damage visible on the MRI, he would be in a coma or have no use of his arms and legs. The location and amount of damage would be devastating. Therefore, he would be getting worse, not better, which is the case. His OT actually thought he was doing awesome! She uses this foam block to help him work on lifting his head and he held it up for 5 minutes. So, clinically, he doesn't seem to have any symptoms of the type of stroke he appears to have had. But, not to say it couldn't be the case. Stranger things have happened. But he also brought up a study that was being done at UCLA when he was there regarding Vigabatrin. Not much has been published on it yet as Vigabatrin is still a new drug and research is still being done. However, when he was at UCLA, he had 25 patients that were on Vigabatrin (the anti-spasm med Dominic has been on since November) that had very similar MRI findings. So, there is a possibility that rather than Dominic having brain damage, rather that he has swelling in his brain caused by the Vigabatrin, that could potentially be reversible. The only way to know for sure is if we take him off the Vigabatrin and do another MRI in a few weeks to see if anything has changed. This is the best case scenario - or as his pediatrician said yesterday, "the only good scenario". It's a little scary taking him off the Vigabatrin because there is the possibility the spasms would come back, then we'd be back at square one. But I guess it's better to know if he truly had a stroke or not.
Metabolic disorders and Mitochondrial diseases are still very good possibilities, so we are repeating all metabolic tests that will include Dominic needed another lumbar puncture (spinal tap) and Dr. Arndt is referring us to one of the top Metabolic specialists in the country at U of M. Dominic also started the vitamin therapies yesterday (in the picture below, you would think that's baby food on his face. Nope. It's his meds. More got on his face than in his mouth, and it stains).
So, for the time being we are in a state of waiting, yet again. We are exploring all of the possibilities and Dr. Arndt, along with the rest of the neurologists in his practice, are sitting down with the hospital radiologists on Friday to review ALL of Dominic's scans (CT's, MRI's, and ultrasounds) to try and see if they can put their heads together and make sense of everything. He seems to be somewhat of an anomaly at this point.
We are heading to Detroit on Monday to consult with Dr. Chugani. I feel very blessed to be seeing the top-ranked "go-to" pediatric neurologist in the country. I'll be interested to see what his take is on everything. Until then, we wait. Wait and pray.
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| Therapy |
Metabolic disorders and Mitochondrial diseases are still very good possibilities, so we are repeating all metabolic tests that will include Dominic needed another lumbar puncture (spinal tap) and Dr. Arndt is referring us to one of the top Metabolic specialists in the country at U of M. Dominic also started the vitamin therapies yesterday (in the picture below, you would think that's baby food on his face. Nope. It's his meds. More got on his face than in his mouth, and it stains).
So, for the time being we are in a state of waiting, yet again. We are exploring all of the possibilities and Dr. Arndt, along with the rest of the neurologists in his practice, are sitting down with the hospital radiologists on Friday to review ALL of Dominic's scans (CT's, MRI's, and ultrasounds) to try and see if they can put their heads together and make sense of everything. He seems to be somewhat of an anomaly at this point.
We are heading to Detroit on Monday to consult with Dr. Chugani. I feel very blessed to be seeing the top-ranked "go-to" pediatric neurologist in the country. I'll be interested to see what his take is on everything. Until then, we wait. Wait and pray.
Sunday, February 27, 2011
Now What?
Thankfully, we were released from the hospital last night. But we don't have many answers or any idea of what to do next. The neurologist we saw, who is a partner of Dominic's doctor, believes he has an underlying metabolic disorder. He came to this conclusion based on where the damage is in his brain and the results of some of his metabolic testing. Of the hundreds of disorders they tested for, some came back abnormal, but none came back diagnostic. But he believes his symptoms, including the IS and seizures, are consistent with Mitochondrial Disease. I didn't really know what a metabolic disorder was, so I turned to the Internet and found that metabolic disorders refer to a broad array of medical problems caused by inherited genetic defects that interfere with the body's metabolism. While there are thousands of metabolic disorders, each caused by a different genetic defect, they cumulatively affect about one in every 4,000 people. Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function.
The Internet can be a good and bad thing. I got my answer but I also read about a few of the more well-known metabolic disorders. Take Tay-Sachs Disease for example - this is a deadly disease of the nervous system in which the body lacks hexosaminidase A, a protein that helps break down a chemical found in nerve tissue called gangliosides. Without this protein, gangliosides, particularly ganglioside GM2, build up in cells, especially nerve cells in the brain. The disease tends to get worse very quickly, and the child usually dies by age 4 or 5.
You can imagine how I felt after I read that. While I don't believe Dominic has this particular disease, I've realized that a metabolic disorder is a pretty scary diagnosis. It's very difficult to figure out what metabolic disorder he has because there are thousands of them. And the devastating part is that even if they can eventually find out what disorder he has, there is no way to treat it. It's just the way his body works and there is nothing they can do about it. I asked the neurologist if the damage to his brain is reversible and he said no. Of the parts that were damaged (which is at the top of the brain stem), some cells were "dying" but not dead. So, those could potentially get better. But most of the cells are "dead" and there is no way to reverse that damage. I asked if there could be further damage and he said that is a good possibility. If it is something metabolic that is causing a lack of blood and oxygen to his brain, there isn't much they can do to stop it.
Because he thinks Mitocondrial Disease is a possibility, for now, the plan is to start Dominic on a Coenzyme Q "cocktail" consisting of vitamin B6, Arginine, Coenzyme q10, folinic acid, riboflavin, and thiamine. While there is no cure for mitochondrial disease, many types of the disease including mitochondrial myopathy, mitochondrial cytopathy, MELAS, PDCD, or Complex I, II, III, and IV are responsive to specific vitamin and supplement therapies. He is also recommending Dominic begin outpatient occupational and physical therapy at least 2-3 days a week at Spectrum, in addition to the therapy he already gets through Early On. This can only increase his chances of development. He will discuss everything with Dr. Arndt on Monday and figure out where they want to go with further metabolic and genetic testing. Dominic will also have another MRI in 1-2 weeks to see if things have gotten better or worse. We are scheduled to see Dr. Chugani in Detroit next week (3/7) for a consult as well.
I thought when Dominic was diagnosed with Infantile Spasms, that would be the biggest hurdle we'd have to face. When his spasms were finally controlled, I felt that finally we could move on and focus on the future. I thought he had a great chance of developing, albeit a bit delayed. Then came the long, scary seizure, then kidney stones and then the hematoma. Now this. I don't even know what to make of this or how to process this. There is absolutely no way to predict what his future holds. I'll be okay one minute and the next minute I start thinking about all this and I just fall apart. No one can give me direct answers and no one can reassure me that everything will be okay. I'm living in this constant state of uncertainty, anguish and fear. I know that I have to trust God and believe that he has His hands in all of this, but I can't help from throwing my hands up, yet again, and asking "why"? Why Dominic? Why does this little 5 month old baby have to endure all of these struggles. What is going to happen to him? Will he ever be able to function normally? Is he going to spend his whole life sick in and out of hospitals? How long will he live if his body can't make the energy for brain and organ function? It just doesn't seem fair. I would give anything to trade places with him, to be able to take all the needle pokes and tests for him. In a heartbeat I would unload this burden he is carrying and gladly take it on myself.
I am once again asking God for a miracle. Maybe more than one miracle in a lifetime is too much to ask for, but I'm going to ask anyway. We continue to ask our friends and family for prayers for Dominic's health, but also for our family. This doesn't just affect Dominic, it affects all of us. It's hard for Mike and I to focus on our other responsibilities with everything going on and it's hard for us to give the attention to Mitchell that he craves. I feel like I'm cheating him out of what he deserves. He shouldn't have to spend his days in doctor's offices and hospitals. But we're doing the best we can and I guess at this point that's all we can do. That and pray. Pray without ceasing.
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| Glad to be home, in our own bath |
The Internet can be a good and bad thing. I got my answer but I also read about a few of the more well-known metabolic disorders. Take Tay-Sachs Disease for example - this is a deadly disease of the nervous system in which the body lacks hexosaminidase A, a protein that helps break down a chemical found in nerve tissue called gangliosides. Without this protein, gangliosides, particularly ganglioside GM2, build up in cells, especially nerve cells in the brain. The disease tends to get worse very quickly, and the child usually dies by age 4 or 5.
You can imagine how I felt after I read that. While I don't believe Dominic has this particular disease, I've realized that a metabolic disorder is a pretty scary diagnosis. It's very difficult to figure out what metabolic disorder he has because there are thousands of them. And the devastating part is that even if they can eventually find out what disorder he has, there is no way to treat it. It's just the way his body works and there is nothing they can do about it. I asked the neurologist if the damage to his brain is reversible and he said no. Of the parts that were damaged (which is at the top of the brain stem), some cells were "dying" but not dead. So, those could potentially get better. But most of the cells are "dead" and there is no way to reverse that damage. I asked if there could be further damage and he said that is a good possibility. If it is something metabolic that is causing a lack of blood and oxygen to his brain, there isn't much they can do to stop it.
Because he thinks Mitocondrial Disease is a possibility, for now, the plan is to start Dominic on a Coenzyme Q "cocktail" consisting of vitamin B6, Arginine, Coenzyme q10, folinic acid, riboflavin, and thiamine. While there is no cure for mitochondrial disease, many types of the disease including mitochondrial myopathy, mitochondrial cytopathy, MELAS, PDCD, or Complex I, II, III, and IV are responsive to specific vitamin and supplement therapies. He is also recommending Dominic begin outpatient occupational and physical therapy at least 2-3 days a week at Spectrum, in addition to the therapy he already gets through Early On. This can only increase his chances of development. He will discuss everything with Dr. Arndt on Monday and figure out where they want to go with further metabolic and genetic testing. Dominic will also have another MRI in 1-2 weeks to see if things have gotten better or worse. We are scheduled to see Dr. Chugani in Detroit next week (3/7) for a consult as well.
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| Little Sweetie |
I thought when Dominic was diagnosed with Infantile Spasms, that would be the biggest hurdle we'd have to face. When his spasms were finally controlled, I felt that finally we could move on and focus on the future. I thought he had a great chance of developing, albeit a bit delayed. Then came the long, scary seizure, then kidney stones and then the hematoma. Now this. I don't even know what to make of this or how to process this. There is absolutely no way to predict what his future holds. I'll be okay one minute and the next minute I start thinking about all this and I just fall apart. No one can give me direct answers and no one can reassure me that everything will be okay. I'm living in this constant state of uncertainty, anguish and fear. I know that I have to trust God and believe that he has His hands in all of this, but I can't help from throwing my hands up, yet again, and asking "why"? Why Dominic? Why does this little 5 month old baby have to endure all of these struggles. What is going to happen to him? Will he ever be able to function normally? Is he going to spend his whole life sick in and out of hospitals? How long will he live if his body can't make the energy for brain and organ function? It just doesn't seem fair. I would give anything to trade places with him, to be able to take all the needle pokes and tests for him. In a heartbeat I would unload this burden he is carrying and gladly take it on myself.
I am once again asking God for a miracle. Maybe more than one miracle in a lifetime is too much to ask for, but I'm going to ask anyway. We continue to ask our friends and family for prayers for Dominic's health, but also for our family. This doesn't just affect Dominic, it affects all of us. It's hard for Mike and I to focus on our other responsibilities with everything going on and it's hard for us to give the attention to Mitchell that he craves. I feel like I'm cheating him out of what he deserves. He shouldn't have to spend his days in doctor's offices and hospitals. But we're doing the best we can and I guess at this point that's all we can do. That and pray. Pray without ceasing.
Friday, February 25, 2011
It's Still Ironic
Just when you think things can't get any worse, they do. Just when you think you can't possibly handle any more bad news, you get it. We had an MRI for Dominic today that they did really just to make sure the hematoma in his brain that they found on the CT scan from last week was going down and to pinpoint exactly where it was and how big it was. After a long day of forcing my 4 month old to fast for 6 hours, enduring sedation, and spending 4 hours in the hospital this afternoon, I was ready to go home and enjoy a relaxing weekend. Within half an hour of arriving home, I received a call from Peds Neurology. They had reviewed his MRI. Prior to our discharge today, I was told I wouldn't get the results for 4-6 days. So, I knew when I got the call it wasn't good. The results of his MRI showed that he has significant brain damage in a deeper part of the brain, totally a separate issue from the hematoma. In most cases it's caused by an injury or stroke, but could also be from a lack of oxygen. The neuro on call thought it may be an underlying metabolic issue that caused the stroke/lack of oxygen/damage. Dominic has already been tested for hundreds of metabolic disorders, so maybe it's one they haven't tested for yet. They really don't know what's going on but are concerned this could happen again and cause more damage. So, he told us to head into the hospital to be admitted so they could monitor and evaluate him. The neuro on call will see him tomorrow morning and he wants to review all scans, ultrasounds, test results, medical history etc. to see if they can figure out what the heck is going on with him.
I honestly didn't know I could physically handle more bad news, but here I sit once again in the hospital with my little baby, waiting for someone to find answers. Somehow God gives you strength when you just don't think you can endure anything more. I guess it's a huge blessing they did the MRI today, since it was originally scheduled for March 15th. But at the same time, it's incredibly difficult to be told that your baby has brain damage.
I continue to ask for prayers as we now have to deal with this new issue. How to treat the damage he has and how to prevent any further damage. It seems that every time things seem to be turning around, we end up back in here with another problem. I don't know how much more I can take...
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| Guess who's back, back again |
I honestly didn't know I could physically handle more bad news, but here I sit once again in the hospital with my little baby, waiting for someone to find answers. Somehow God gives you strength when you just don't think you can endure anything more. I guess it's a huge blessing they did the MRI today, since it was originally scheduled for March 15th. But at the same time, it's incredibly difficult to be told that your baby has brain damage.
I continue to ask for prayers as we now have to deal with this new issue. How to treat the damage he has and how to prevent any further damage. It seems that every time things seem to be turning around, we end up back in here with another problem. I don't know how much more I can take...
Wednesday, February 23, 2011
Paralysis, Hemtoma and Kidney Stones - Oh my!
Things are going pretty well this week, no trips to the ER and no hospital stays. We did see the Urologist on Monday and he feels that there is nothing to do right now. He's not in pain and since we stopped the Topamax, he is hoping they will dissolve on their own. We will go back in 3 months for a follow-up ultrasound to make sure they are not getting bigger. If they are, they will need to remove them. The way he described it, that does not sound like fun. Hopefully we can avoid that procedure. Both Dominic's Neurologist and the Urologist thinks it's best if he still sees a Nephrologist, so we're in the process of making that appointment.
I spoke with his Neurologist for awhile last night and he wants Dominic to have an MRI as soon as possible, which is this Friday. He thinks the hematoma in his brain was probably caused by the ACTH. I guess when you're on steroids, your brain swells and then shrinks. So, he thinks that some of the blood vessels in his brain that attach the brain to the skull tore a little when his brain shrunk...yeah, sounds a little scary to me too, but he said not to worry. Yeah, okay. But I guess it can happen and it's the only logical explanation since he did not have an injury and his blood work that tested for bleeding and clotting disorders came back normal. The MRI will reveal where exactly the hematoma is and how bad it is. He is hoping that if it was from the ACTH that come Friday, it will be much smaller or gone altogether. So, that's what we're hoping for.
We were supposed to have his diagnostic BAER test today, but due to a confusing and unnecessary scheduling mix-up, we now have it scheduled for March 17th. We still have our appointment with Dr. Chugani in Detroit scheduled for March 8th, although Dr. Arndt is leaning towards cancelling it since his seizures seem to be under control. But, we'll wait to see what the MRI shows.
Dominic's arm situation has gotten much better, so they are pretty sure it was just Todd's paralysis, which is temporary paralysis following a long seizure. It just seemed to take a bit longer to clear up than normal. He has actually been doing very well. Despite everything he's been through, he is such a happy little guy. Every time you look at him and smile, his face lights up and he has the biggest grin from ear to ear. Well, cheek to cheek I should say. His cheeks are so big they get in the way. He is getting much more active and is constantly kicking and grabbing at things, cooing and gurgling. His favorite thing to do is mimic me when I stick my tongue out, he thinks that's absolutely hysterical. He's also sleeping much better. Yes, he is still sleeping in his car seat, but he is now in his own room and after a few nights of crying it out, he goes for 4-6 hour stretches. This is amazing for me. For awhile he was up every 2 hours or so. It's amazing what 5 straight hours of sleep can do!
We are hoping to take a family vacation in the next few months to my parent's place in Florida, although I'm not sure his doctors will be okay with it. It just seems like a week away as a family is something we could really use right now and the warmth and sunshine wouldn't hurt either. Hopefully over the next few weeks we don't see any more seizures or have any more unexpected trips to the hospital and the docs give the green light. I know this disorder is something we will have to deal with for a long time, but I would be really sad if it prevents us from going places and doing things as a family. So we'll keep our fingers crossed!
I spoke with his Neurologist for awhile last night and he wants Dominic to have an MRI as soon as possible, which is this Friday. He thinks the hematoma in his brain was probably caused by the ACTH. I guess when you're on steroids, your brain swells and then shrinks. So, he thinks that some of the blood vessels in his brain that attach the brain to the skull tore a little when his brain shrunk...yeah, sounds a little scary to me too, but he said not to worry. Yeah, okay. But I guess it can happen and it's the only logical explanation since he did not have an injury and his blood work that tested for bleeding and clotting disorders came back normal. The MRI will reveal where exactly the hematoma is and how bad it is. He is hoping that if it was from the ACTH that come Friday, it will be much smaller or gone altogether. So, that's what we're hoping for.
We were supposed to have his diagnostic BAER test today, but due to a confusing and unnecessary scheduling mix-up, we now have it scheduled for March 17th. We still have our appointment with Dr. Chugani in Detroit scheduled for March 8th, although Dr. Arndt is leaning towards cancelling it since his seizures seem to be under control. But, we'll wait to see what the MRI shows.
Dominic's arm situation has gotten much better, so they are pretty sure it was just Todd's paralysis, which is temporary paralysis following a long seizure. It just seemed to take a bit longer to clear up than normal. He has actually been doing very well. Despite everything he's been through, he is such a happy little guy. Every time you look at him and smile, his face lights up and he has the biggest grin from ear to ear. Well, cheek to cheek I should say. His cheeks are so big they get in the way. He is getting much more active and is constantly kicking and grabbing at things, cooing and gurgling. His favorite thing to do is mimic me when I stick my tongue out, he thinks that's absolutely hysterical. He's also sleeping much better. Yes, he is still sleeping in his car seat, but he is now in his own room and after a few nights of crying it out, he goes for 4-6 hour stretches. This is amazing for me. For awhile he was up every 2 hours or so. It's amazing what 5 straight hours of sleep can do!
We are hoping to take a family vacation in the next few months to my parent's place in Florida, although I'm not sure his doctors will be okay with it. It just seems like a week away as a family is something we could really use right now and the warmth and sunshine wouldn't hurt either. Hopefully over the next few weeks we don't see any more seizures or have any more unexpected trips to the hospital and the docs give the green light. I know this disorder is something we will have to deal with for a long time, but I would be really sad if it prevents us from going places and doing things as a family. So we'll keep our fingers crossed!
Wednesday, February 16, 2011
Your Hands
"When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands"
The last week has been a whirlwind. We were released from the hospital late Friday afternoon and enjoyed a nice weekend at home as a family. We put Dominic in his excersaucer for the first time (see pic below). Since he can't totally hold his head up, we had to put a lot of pillows and blankets around him, but he seemed to like it. I'm hoping this encourages him to put weight on his legs and will strengthen them. It was so nice to just hang out as a family, we even got out on Saturday for lunch. I'm hoping my days of being a hermit are over.
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| Out lunch with the fam |
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| Notice all the pillows and padding! |
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| Back in the ER for a CT |
I have unanswered prayers
I have trouble I wish wasn’t there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away
I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine
When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands
When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right
When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands
Your hands that shaped the world
Are holding me
They hold me still
- JJ Heller Your Hands
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