Dear Baby,
This evening, my received information from the Musculoskeletal Transplant Foundation with brochures and pamphlets of the National Kidney Foundation. I have previously received a card from the MTF to thank us for your gfit. Did I ever tell you we have donated your heart valves? I guess not. Even before you left us for Heaven, daddy and mommy have thought of donating your organs to help other babies. But we were unsure if it's possible because of the genetic disease that you had. On the day you went to Heaven, we asked the Chief if it's possible. She has actually tried to contact MTF to see if it's possible to donate your heart valves. The hours after you left us, Mommy spent a whole hour and a half on the phone with the counselor from MTF, and answered all the ten billion questions that they had regarding our medical history. Took them a while to figure out if it's possible. The following day, mommy received a phone call saying everything went well. Your heart has always been healthy. So, Mommy was glad that you will be able to save two to three babies' lives, if not, to contribute to research to save lives in the future. The hours after you left, and waiting for the MTF were tough. You were lying in bed in front of me, looking peaceful and angelic, but Mommy and Daddy had to stay strong, and waited for the long process to complete. We tried to stay positive. You could save lives!
Mommy was too chicken to look at your scar and your stitches. I only want to remember the good, and forget the bad. I remember always wanted to be an organ donor. But when it comes to actually putting that little sticker on my driver's licence, I chickened out. I don't know why. Theoretically, it's great. But at that moment, I just couldn't do it. But after this experience, you have given me the strength to get that sticker. I haven't done that yet, but I promise you, I will.
Getting information in the mail today reminded me that you have really left us. Periodically, they will send other information to us, and it will just keep reminding us that you're gone. However, I know one day I would be glad to receive information in the mail telling us that a baby has received this Gift of Life. I don't need details, I just want to know a baby is saved and his/her family doesn't have to go through what we have gone through. Then, it's all worth it.
Throughout this experience, I found out that there are many resources out there for grieving families. It seems like wherever we go, there's a pamphlet that lists different organizations or support groups. Even today, through the National Kidney Foundation, they have support groups and tons of resources. Unless I am in denial, I feel that I am still doing ok. I can still get up in the morning, run my errands, watch my tv, continue to surf the net and write my blog. Your big brother has also taken the responsibility to cheer Daddy and Mommy up. I think we're ok. But if we're not, we know where to turn to.
Honey, watch over all the other sick babies. Give them and their family strength. Hopefully, in a few months, Mommy will receive good news in the mail that a baby has been saved by your gift of life.
Love you,
Mommy
Thursday, April 30, 2009
Second part of Phone Interview
Hello Sweetheart,
How are you doing? A cloudy day, not too much sun here in S. SF. I hope there's some sun in Los Gatos. Mommy did a lot of errands this morning, but stayed home in the afternoon. I got you some beautiful red carnations. I'll bring them to you tomorrow, ok? The weather forecast said it might rain tomorrow and Saturday, hopefully, it rains after I come visit you. But then with the rain, my allergies won't be as bad, and it would be a lot more comfortable for me to stay longer at your new home.
Mommy also finished the phone interview with the psychologist about your big brother. They really have a long list of questions. The two-part phone interview lasted over an hour and 15 minutes. I asked the Dr. if knowing so much details would be bad because the people evaluating your big brother would have a a preconception of what your brother is like. It's like when Mommy goes to work, and I read the intake packet of a client before meeting the client. Sometimes, it's a good thing, sometimes it's not. Not sure if it's a good thing or bad thing. The psychologist said it's their protocol to gather as much information as possible, especially, in regards to a child. I also asked her after meeting Aidan yesterday, if she had any other concerns aside from the obsession with the door. She said his attention span seemed a little short, and he seemed to keep himself busy with toys, instead of engaging in conversation or playing with her. Sometimes, he didn't immediately take directions and needed re-directions. Mommy is trying to keep an open mind about all this. Whatever the evaluation result it's going to be, I am going to think of the positives. I am hoping he would grow out of all these 'concerns', but if therapy is needed, then we'll do it. Somehow I always think he's on 3, and he should not be judged so early, especially, when he's only been in preschool for 2 months and is still getting to know the routine. Can't a boy be more interested in a toy than to talk talk talk?
Anyways, Mommy also mailed your clothes to Auntie Shelley today for the quilt. I hope I have sent enough. I still need to figure out what to do with the rest of your medical supplies, such as, feeding tubes and syringes. I think I might post on the message board and see if any other babies need them.
Well dear, Mommy will see you tomorrow. Take care and don't forget to watch over your big brother.
Love you,
Mommy
How are you doing? A cloudy day, not too much sun here in S. SF. I hope there's some sun in Los Gatos. Mommy did a lot of errands this morning, but stayed home in the afternoon. I got you some beautiful red carnations. I'll bring them to you tomorrow, ok? The weather forecast said it might rain tomorrow and Saturday, hopefully, it rains after I come visit you. But then with the rain, my allergies won't be as bad, and it would be a lot more comfortable for me to stay longer at your new home.
Mommy also finished the phone interview with the psychologist about your big brother. They really have a long list of questions. The two-part phone interview lasted over an hour and 15 minutes. I asked the Dr. if knowing so much details would be bad because the people evaluating your big brother would have a a preconception of what your brother is like. It's like when Mommy goes to work, and I read the intake packet of a client before meeting the client. Sometimes, it's a good thing, sometimes it's not. Not sure if it's a good thing or bad thing. The psychologist said it's their protocol to gather as much information as possible, especially, in regards to a child. I also asked her after meeting Aidan yesterday, if she had any other concerns aside from the obsession with the door. She said his attention span seemed a little short, and he seemed to keep himself busy with toys, instead of engaging in conversation or playing with her. Sometimes, he didn't immediately take directions and needed re-directions. Mommy is trying to keep an open mind about all this. Whatever the evaluation result it's going to be, I am going to think of the positives. I am hoping he would grow out of all these 'concerns', but if therapy is needed, then we'll do it. Somehow I always think he's on 3, and he should not be judged so early, especially, when he's only been in preschool for 2 months and is still getting to know the routine. Can't a boy be more interested in a toy than to talk talk talk?
Anyways, Mommy also mailed your clothes to Auntie Shelley today for the quilt. I hope I have sent enough. I still need to figure out what to do with the rest of your medical supplies, such as, feeding tubes and syringes. I think I might post on the message board and see if any other babies need them.
Well dear, Mommy will see you tomorrow. Take care and don't forget to watch over your big brother.
Love you,
Mommy
Wednesday, April 29, 2009
Lovely lunch and Aidan
Hello Honey,
Did you get to enjoy some sun today after Mommy left? Mommy's allergies were acting up while I was there. I even took some drugs beforehand, but it didn't work very well. After I said goodbye to you, I actually sat in the car for a little longer. I didn't want to leave too early, so I sat in there, closed my windows, and took out my Ipod Touch to look at your pictures. Those pictures brought back so many memories. I've been looking at your pictures so much that it seems like you're still around. But when I looked at the final picture that I took of you when you're sleeping in the hospital, I felt sad again. You looked like a sleeping baby, so angelic, and didn't look sick at all.
After visiting you, Mommy went back to The Arc to visit some co-workers. Oh, I forgot to tell you that my dear co-workers donated to The Arbor Day Foundation and have 25 trees planted in memory of you! How cool is that! Honey, if you could live till you're 18, with some sort of developmental delay, I would want The Arc to provide services for you (assuming 18 years from now, The Arc continues to provide such excellent services with excellent people like now). I am confident that you would be in good hands, and you would have the best quality of life you could have when Mommy and Daddy are not around anymore. Mommy got to thank all her co-workers for all of their amazing support. Through this, Mommy also got to know some of them a little better, and their personal stories, which Mommy would have never found out if it's not for you. I am trying to think of all the positive things coming out of this experience. We had lunch at Don Ramon's. I love their chimichangas, and their super-fatty-lard-filled refried beans with cheese are to die for. I think my cholesterol level went up because of those beans. Noneless, it was a lovely lunch. Mommy has also decided to go back to work on July 1st.
Then Mommy went to pick-up your big brother from school and went to see the Child Psychologist for an evaluation. The psychologist played with your big brother alone for about 20-30 mins, while I waited outside. When I went back, she told me that she played with Aidan both in a little more structured way, and also a non-structured way. Your big brother was able to tell me what they did: playing with playdough and made a car, drawing a smiley face, counting, identifying body parts, making different faces of emotions. Apparently, he was able to do most of them. But the problem is his obsession. He was playing with the door, and when she wanted to redirect him to draw with crayons, he was using the crayons to do open-and-close motion. Just couldn't take his mind off that open-and-close idea. The psychologist recommended a more thorough, standardized evaluation in San Francisco. I asked her if Aidan's obsession is more of OCD instead of Autism. She said OCD usually involves some kind of anxiety, and Aidan doesn't have that. I then asked about ADHD. She replied Aidan is too young to be evaluated on that. They usually do that when kids start going to school. Right now, it's unclear if it's one of the symptoms of Autism, or he's just being a 3-year-old boy. He might grow out of it. But to get a more thorough evaluation will give us more information, and to have early intervention, if needed. I told her I would be leaving the country soon and then go back to work, so I'd like the evaluation to be completed the week after I come back from Asia. Tomorrow, we will complete the rest of the phone interview, and then she will make a referral to the ASD clinic in San Francisco. I might ask for a second opinion through the Regional Center after this evaluation. Going through Kaiser is just a little faster. I know the budget cut at GGRC will just drag the whole process, and I probably won't be able to get a hold of them before I leave. Logan, please watch over your big brother and make sure he's ok.
Speaking of your big brother, I think he really misses you. One night, he woke up from his sleep and was whining/crying. I heard him say "Baby Logan", but was unable to get much out of him. He doesn't understand what's going on and still wants to visit you in the hospital. It's so hard to hear him say that because I would have to explain to him that Baby Logan is not in the hospital anymore. Yet, he doesn't quite get it. I know he misses you.
Mommy also got to check out your brother's school pictures yesterday. The pictures were very nice and I really wanted to purchase them. However, they are super expensive. How can they charge $14.50 for ONE 4x6 picture?!?! Are you kidding me?? If I want to get a CD of all the pictures (all 34 of them), it costs $149!?!?! Geez! I know he's a fancy photographer, and the school is in Palo Alto, but still!!! I might order one or two, just because they do look very nice. Heck, I think I could take pictures like that, too! haha.. I know, Mommy is being stingy and silly.
Tomorrow will not be as busy as today. Mommy did a lot of driving today. South SF --> Palo Alto --> Los Gatos --> San Francisco --> Palo Alto --> San Bruno --> South SF. Wow! Time to pump gas again!
Take care for now, my dear guardian angel.
Miss you,
Mommy
Did you get to enjoy some sun today after Mommy left? Mommy's allergies were acting up while I was there. I even took some drugs beforehand, but it didn't work very well. After I said goodbye to you, I actually sat in the car for a little longer. I didn't want to leave too early, so I sat in there, closed my windows, and took out my Ipod Touch to look at your pictures. Those pictures brought back so many memories. I've been looking at your pictures so much that it seems like you're still around. But when I looked at the final picture that I took of you when you're sleeping in the hospital, I felt sad again. You looked like a sleeping baby, so angelic, and didn't look sick at all.
After visiting you, Mommy went back to The Arc to visit some co-workers. Oh, I forgot to tell you that my dear co-workers donated to The Arbor Day Foundation and have 25 trees planted in memory of you! How cool is that! Honey, if you could live till you're 18, with some sort of developmental delay, I would want The Arc to provide services for you (assuming 18 years from now, The Arc continues to provide such excellent services with excellent people like now). I am confident that you would be in good hands, and you would have the best quality of life you could have when Mommy and Daddy are not around anymore. Mommy got to thank all her co-workers for all of their amazing support. Through this, Mommy also got to know some of them a little better, and their personal stories, which Mommy would have never found out if it's not for you. I am trying to think of all the positive things coming out of this experience. We had lunch at Don Ramon's. I love their chimichangas, and their super-fatty-lard-filled refried beans with cheese are to die for. I think my cholesterol level went up because of those beans. Noneless, it was a lovely lunch. Mommy has also decided to go back to work on July 1st.
Then Mommy went to pick-up your big brother from school and went to see the Child Psychologist for an evaluation. The psychologist played with your big brother alone for about 20-30 mins, while I waited outside. When I went back, she told me that she played with Aidan both in a little more structured way, and also a non-structured way. Your big brother was able to tell me what they did: playing with playdough and made a car, drawing a smiley face, counting, identifying body parts, making different faces of emotions. Apparently, he was able to do most of them. But the problem is his obsession. He was playing with the door, and when she wanted to redirect him to draw with crayons, he was using the crayons to do open-and-close motion. Just couldn't take his mind off that open-and-close idea. The psychologist recommended a more thorough, standardized evaluation in San Francisco. I asked her if Aidan's obsession is more of OCD instead of Autism. She said OCD usually involves some kind of anxiety, and Aidan doesn't have that. I then asked about ADHD. She replied Aidan is too young to be evaluated on that. They usually do that when kids start going to school. Right now, it's unclear if it's one of the symptoms of Autism, or he's just being a 3-year-old boy. He might grow out of it. But to get a more thorough evaluation will give us more information, and to have early intervention, if needed. I told her I would be leaving the country soon and then go back to work, so I'd like the evaluation to be completed the week after I come back from Asia. Tomorrow, we will complete the rest of the phone interview, and then she will make a referral to the ASD clinic in San Francisco. I might ask for a second opinion through the Regional Center after this evaluation. Going through Kaiser is just a little faster. I know the budget cut at GGRC will just drag the whole process, and I probably won't be able to get a hold of them before I leave. Logan, please watch over your big brother and make sure he's ok.
Speaking of your big brother, I think he really misses you. One night, he woke up from his sleep and was whining/crying. I heard him say "Baby Logan", but was unable to get much out of him. He doesn't understand what's going on and still wants to visit you in the hospital. It's so hard to hear him say that because I would have to explain to him that Baby Logan is not in the hospital anymore. Yet, he doesn't quite get it. I know he misses you.
Mommy also got to check out your brother's school pictures yesterday. The pictures were very nice and I really wanted to purchase them. However, they are super expensive. How can they charge $14.50 for ONE 4x6 picture?!?! Are you kidding me?? If I want to get a CD of all the pictures (all 34 of them), it costs $149!?!?! Geez! I know he's a fancy photographer, and the school is in Palo Alto, but still!!! I might order one or two, just because they do look very nice. Heck, I think I could take pictures like that, too! haha.. I know, Mommy is being stingy and silly.
Tomorrow will not be as busy as today. Mommy did a lot of driving today. South SF --> Palo Alto --> Los Gatos --> San Francisco --> Palo Alto --> San Bruno --> South SF. Wow! Time to pump gas again!
Take care for now, my dear guardian angel.
Miss you,
Mommy
Tuesday, April 28, 2009
Guilt
Hi Sweetheart,
How are you today? Mommy was so tired yesterday that I slept with your big brother from 9:30 p.m.-7:30 a.m. Remember I told you yesterday that I went to get my blood drawn to test for Leigh's Disease. The counselor said the results won't come back for another 2.5 weeks. I gave her my date of when I leave the country, and if the results come back early to give me a call. I know we still need to meet with the Geneticist to go through the result because of how complicated it is, but I still would like to get a "Yes" or "No" from them as soon as possible. Mommy worries about your big brother, too. Though it's unlikely that he will develop symptoms as he's already 3, but Mitochondrial Diseases can have a late-onset as well. Can you pray for us and make sure we're ok?
Mommy told you yesterday that sometimes I questioned my decision about you. It was a very emotional decision and it was very difficult to make. But when I read about how other babies with Leigh's Disease or Mitochondrial Disease can live until the age of 2 or 3 or even 14, I wonder if we have made the wrong decision. I know deep down we're right, especially, with all the objective facts in front of us. But I just can't stop thinking about it. The decision makes me feel like I am choosing your big brother over you. I know that's not it, because I don't want you to suffer. But now that you're in heaven, our lives go back to somewhat normal. No more long drives to the hospital everyday, no more worrying about how to take care of you if you're home, no more worrying about when we have to go to the ER once again if you get sick, no more worrying about all of the inconveniences that would happen, if were you home. Oh honey, that sounds so selfish. That is definitely not how Mommy and Daddy feel when we let you go. We want you to be happy. We want you to be free from tubes and tapes and needle-poking. We want you not to suffer. But, that guilt is still there. It's eating me up whenever I read a story about another baby who lives longer than you. I should be happy for them, and not feeling like this. When will this guilt go away?
Mommy made a photobook of you yesterday. Mother's Day will be here soon, and there are coupons for free photobooks. I've been thinking about making one for a while, just never actually feel like doing it. Since the coupon expired yesterday, I made three books: one for me, one for Ah Po and one for Grandma. I know they will be sad when they see pictures of you, but I want them to have it because they love you so much.
Daddy's friend, Auntie Shelley, has offered to made a quilt out of your clothes. I think that's a great idea! Thanks Auntie Shelley! Mommy will pack up some of your clothes and then send to her. You have clothes that you wear all the time, and those would make a nice momento because I have pictures of your wearing the same sleeper and sleepsack.
Mommy will try to clean up the house a little today. Got a lot of laundry to do and the house is a mess. Today will be a day that I am not going anywhere. It's time to chill and relax. Mommy will come see you tomorrow, ok?
Take care baby.
Love you,
Mommy
How are you today? Mommy was so tired yesterday that I slept with your big brother from 9:30 p.m.-7:30 a.m. Remember I told you yesterday that I went to get my blood drawn to test for Leigh's Disease. The counselor said the results won't come back for another 2.5 weeks. I gave her my date of when I leave the country, and if the results come back early to give me a call. I know we still need to meet with the Geneticist to go through the result because of how complicated it is, but I still would like to get a "Yes" or "No" from them as soon as possible. Mommy worries about your big brother, too. Though it's unlikely that he will develop symptoms as he's already 3, but Mitochondrial Diseases can have a late-onset as well. Can you pray for us and make sure we're ok?
Mommy told you yesterday that sometimes I questioned my decision about you. It was a very emotional decision and it was very difficult to make. But when I read about how other babies with Leigh's Disease or Mitochondrial Disease can live until the age of 2 or 3 or even 14, I wonder if we have made the wrong decision. I know deep down we're right, especially, with all the objective facts in front of us. But I just can't stop thinking about it. The decision makes me feel like I am choosing your big brother over you. I know that's not it, because I don't want you to suffer. But now that you're in heaven, our lives go back to somewhat normal. No more long drives to the hospital everyday, no more worrying about how to take care of you if you're home, no more worrying about when we have to go to the ER once again if you get sick, no more worrying about all of the inconveniences that would happen, if were you home. Oh honey, that sounds so selfish. That is definitely not how Mommy and Daddy feel when we let you go. We want you to be happy. We want you to be free from tubes and tapes and needle-poking. We want you not to suffer. But, that guilt is still there. It's eating me up whenever I read a story about another baby who lives longer than you. I should be happy for them, and not feeling like this. When will this guilt go away?
Mommy made a photobook of you yesterday. Mother's Day will be here soon, and there are coupons for free photobooks. I've been thinking about making one for a while, just never actually feel like doing it. Since the coupon expired yesterday, I made three books: one for me, one for Ah Po and one for Grandma. I know they will be sad when they see pictures of you, but I want them to have it because they love you so much.
Daddy's friend, Auntie Shelley, has offered to made a quilt out of your clothes. I think that's a great idea! Thanks Auntie Shelley! Mommy will pack up some of your clothes and then send to her. You have clothes that you wear all the time, and those would make a nice momento because I have pictures of your wearing the same sleeper and sleepsack.
Mommy will try to clean up the house a little today. Got a lot of laundry to do and the house is a mess. Today will be a day that I am not going anywhere. It's time to chill and relax. Mommy will come see you tomorrow, ok?
Take care baby.
Love you,
Mommy
Sunday, April 26, 2009
Blood Test and Baby
Hi Sweetheart,
How are you today? Mommy didn't do much. It's a relaxing Sunday, after such a work out yesterday. Mommy's legs were sore yesterday evening after walking so much. Actually, it's more of my shoes scrapping my ankles, instead of the actual walking. Mommy, Daddy and Big Brother Aidan only went to Costco today for some shopping. Your big brother had a whole big slice of pizza for lunch! He really loves pizzas. He also took a passport picture for his China visa, which Mommy needs to complete the application tomorrow and bring everything to the travel agency. Mommy is being lazy. I'd rather pay an extra $20 than to wait in line with 100000000 other people at the Chinese Consulate.
Mommy is going to get her blood test done tomorrow at the Genetics department. Because of your Leigh's disease, Mommy wants to be sure whether I am a carrier of the DNA as well, or you're just one of the rare ones with the DNA mutation. Since Leigh's disease is a Mitochondrial Disease, and it's genetic and only spread from mothers to children, Mommy needs to be sure whether your big brother carry the DNA as well. The Geneticist mentioned that it's very likely Mommy and your big brother have the same DNA, but not all the mitochondrial DNA have that problem, thus, we're able to function normally. Unfortunately, you had the more severe case and nothing could be done to help you. It might take a while for the blood test result to come back, and I won't know the result until I return from my trip.
One of Mommy's friends, and also Ah Gung and Ah Po asked if Mommy wanted to have another baby. I flat out told them NO. Mommy mentioned to Ah Po whether anyone in Macau or China would like your unsued clothes. If not, then Mommy plans to donate them all. Then Ah Gung and Ah Po asked why not save the clothes for the next baby. Mommy told them, I will not have another baby until I know about the result of the blood test. Mommy tried to explain to them what Leigh's disease is about, and that if Mommy is tested positive, your Auntie might need to get tested, too, as she might also pass that to her future children. I am not sure how she can get tested in Macau, as this is a very specialized genetics test, and I think only a few labs in the world actually perform the test.
Even if Mommy were to have another baby, I don't think I can bear seeing the new baby wearing clothes that should have been belonged to you. Seeing them will just remind me more and more of how you couldn't wear any of these clothes. In the next few weeks, Mommy will slowly start to sort through all of your stuff. Some I will keep and put in a shadow box. Others, I will try to sell or donate them. Your room still remains untouched at the moment. I have all of your medical information, which I don't know what to do with them now. I think I will have to organize them and probably keep them in a box. You will have a special box or chest, where Mommy keeps all of your things. I might not look at them often, but you will always be with us, to the new house, and wherever we go.
Mommy's going to come see you tomorrow after the blood test, ok? I'll talk to you then.
Love you,
Mommy
How are you today? Mommy didn't do much. It's a relaxing Sunday, after such a work out yesterday. Mommy's legs were sore yesterday evening after walking so much. Actually, it's more of my shoes scrapping my ankles, instead of the actual walking. Mommy, Daddy and Big Brother Aidan only went to Costco today for some shopping. Your big brother had a whole big slice of pizza for lunch! He really loves pizzas. He also took a passport picture for his China visa, which Mommy needs to complete the application tomorrow and bring everything to the travel agency. Mommy is being lazy. I'd rather pay an extra $20 than to wait in line with 100000000 other people at the Chinese Consulate.
Mommy is going to get her blood test done tomorrow at the Genetics department. Because of your Leigh's disease, Mommy wants to be sure whether I am a carrier of the DNA as well, or you're just one of the rare ones with the DNA mutation. Since Leigh's disease is a Mitochondrial Disease, and it's genetic and only spread from mothers to children, Mommy needs to be sure whether your big brother carry the DNA as well. The Geneticist mentioned that it's very likely Mommy and your big brother have the same DNA, but not all the mitochondrial DNA have that problem, thus, we're able to function normally. Unfortunately, you had the more severe case and nothing could be done to help you. It might take a while for the blood test result to come back, and I won't know the result until I return from my trip.
One of Mommy's friends, and also Ah Gung and Ah Po asked if Mommy wanted to have another baby. I flat out told them NO. Mommy mentioned to Ah Po whether anyone in Macau or China would like your unsued clothes. If not, then Mommy plans to donate them all. Then Ah Gung and Ah Po asked why not save the clothes for the next baby. Mommy told them, I will not have another baby until I know about the result of the blood test. Mommy tried to explain to them what Leigh's disease is about, and that if Mommy is tested positive, your Auntie might need to get tested, too, as she might also pass that to her future children. I am not sure how she can get tested in Macau, as this is a very specialized genetics test, and I think only a few labs in the world actually perform the test.
Even if Mommy were to have another baby, I don't think I can bear seeing the new baby wearing clothes that should have been belonged to you. Seeing them will just remind me more and more of how you couldn't wear any of these clothes. In the next few weeks, Mommy will slowly start to sort through all of your stuff. Some I will keep and put in a shadow box. Others, I will try to sell or donate them. Your room still remains untouched at the moment. I have all of your medical information, which I don't know what to do with them now. I think I will have to organize them and probably keep them in a box. You will have a special box or chest, where Mommy keeps all of your things. I might not look at them often, but you will always be with us, to the new house, and wherever we go.
Mommy's going to come see you tomorrow after the blood test, ok? I'll talk to you then.
Love you,
Mommy
Saturday, April 25, 2009
March of Dimes - March for Babies
Dear Baby,
A Grand Total of $3613!!!! That's all the donation Team Logan The Lobster received!!!
We had such a wonderful walk today. You would be so proud of your Mommy, Daddy, Grandma and Big Brother. Though we didn't do the whole 6.25 miles, we did 2/3 of it, which is the Family Walk. We got to Fort Mason right at 8 a.m. and Uncle Yance and his friend were already there. We hung out for a while, had breakfast and got some juices and snackies for your big brother. It was windy but it was nice and sunny. Mommy loves to see bright sunny blue sky. Auntie Shelley then joined us shortly and she was able to raise $200 worth of donation from her friends! Mommy also met up with her co-workers and friends from The Arc. They participated in this event because of you. Mommy is so grateful that so many staff and clients showed up for the event. Mommy will personally go back to The Arc on Wednesday and thank them all. I haven't been back since I started my maternity leave. I've been wanting to bring you back, but we never got the chance to. You're so loved by them all, even though they have never met you. You could see from the pictures below how much fun we had. Grandma was such a good sport! She was carrying and chasing after your big brother and also pushing the stroller all the way back. She got a lot more exercise than Mommy and Daddy! Mommy really needs to exercise more. My legs are already sore! Were you watching over us? Did you ask God to grant us such great weather as well?
Honey, I hope you enjoyed the picture. We did it all in memory of you. Because of you, your big brother has his first charity event. We will do more of this in the future. For now, take care of yourself and go play with the little angels.
Love you,
Mommy
A Grand Total of $3613!!!! That's all the donation Team Logan The Lobster received!!!
We had such a wonderful walk today. You would be so proud of your Mommy, Daddy, Grandma and Big Brother. Though we didn't do the whole 6.25 miles, we did 2/3 of it, which is the Family Walk. We got to Fort Mason right at 8 a.m. and Uncle Yance and his friend were already there. We hung out for a while, had breakfast and got some juices and snackies for your big brother. It was windy but it was nice and sunny. Mommy loves to see bright sunny blue sky. Auntie Shelley then joined us shortly and she was able to raise $200 worth of donation from her friends! Mommy also met up with her co-workers and friends from The Arc. They participated in this event because of you. Mommy is so grateful that so many staff and clients showed up for the event. Mommy will personally go back to The Arc on Wednesday and thank them all. I haven't been back since I started my maternity leave. I've been wanting to bring you back, but we never got the chance to. You're so loved by them all, even though they have never met you. You could see from the pictures below how much fun we had. Grandma was such a good sport! She was carrying and chasing after your big brother and also pushing the stroller all the way back. She got a lot more exercise than Mommy and Daddy! Mommy really needs to exercise more. My legs are already sore! Were you watching over us? Did you ask God to grant us such great weather as well?
This is your big brother with his March of Dimes shirt. Since they didn't have a kid's size, he was wearing it like a dress. Your brother loved it!
This is the poster that Mommy tried to send out the other day but couldn't make it work. So, I had to print it out myself. It's a little smaller because I didn't have legal size paper.
This is the Mission Mile poster section. You were accompanied by all these babies. Wow, look how special you are! All in the middle. Actually, another baby joined you in the special section later on.
Your big brother Aidan enjoying his juice. He had so many juice boxes today that I lost count!
Big brother was playing with Grandma's walker. He was enjoying the music most of the time, and that kept him busy and entertained.
Team Logan The Lobster! Uncle Yance, Daddy, Mommy, Big Brother, Grandma, Auntie Trinh, Yoori the Doggie, and Auntie Shelley. Mommy is waiting for the official Team picture to be e-mailed to me. Hopefully soon!
This is just a gorgeous view of the Golden Gate Bridge.
This is the poster that Mommy tried to send out the other day but couldn't make it work. So, I had to print it out myself. It's a little smaller because I didn't have legal size paper.
This is the Mission Mile poster section. You were accompanied by all these babies. Wow, look how special you are! All in the middle. Actually, another baby joined you in the special section later on.
Your big brother Aidan enjoying his juice. He had so many juice boxes today that I lost count!
Big brother was playing with Grandma's walker. He was enjoying the music most of the time, and that kept him busy and entertained.
Team Logan The Lobster! Uncle Yance, Daddy, Mommy, Big Brother, Grandma, Auntie Trinh, Yoori the Doggie, and Auntie Shelley. Mommy is waiting for the official Team picture to be e-mailed to me. Hopefully soon!
This is just a gorgeous view of the Golden Gate Bridge.
Honey, I hope you enjoyed the picture. We did it all in memory of you. Because of you, your big brother has his first charity event. We will do more of this in the future. For now, take care of yourself and go play with the little angels.
Love you,
Mommy
Friday, April 24, 2009
A Realization
Dear Baby Logan,
Mommy started off today on the wrong feet. Mommy forgot to do the Mission Mile poster for tomorrow's walk last night and was scrambling this morning to get it sent by 9 a.m. After messing it with for a while, it didn't work out as planned. I would have to print it out and bring that in tomorrow instead. During all this frustration, Mommy realized something. I thought I was fine. I was keeping myself busy this whole week with different errands, going to different places. Mommy didn't cry a whole lot. There were moments when I got teary-eyed, but I did fine for the most part. But when I was so frustrated and upset this morning, Mommy broke down. I wasn't doing as good as I thought I am. I was so upset at myself. I know it takes time, since you it's only been a week and two days since you left us, but I still miss you lots.
Did you hear Mommy and Daddy's voice today? We were at your new home visiting you, and brought you your toys that have kept you company when you were at the hospital. Mommy was also trying to salvage the roses that your grandparents gave you. Since we left the flowers there on Wednesday, we were unable to attend to them as there was no place to put them. Mommy was able to trim the roses and put them in a vase, and also put the potted chrysanthemum nicely on your temporary door. Mommy has also taken a 360 degree view of your new home because I know Ah Gung and Ah Po would like to know what your new home looks like.
We were at the office and tried to pick out a "door" for you. This is going to take some time because we want to get it right. We've made copies of the fonts and pictures that we like, and then Daddy and Mommy will decide what to write on your it. Mommy will definitely get it done before I go back to Macau. It's going to take a while before you have this new "door" to your new home. Hopefully, you will like it.
Remember Mommy told you Daddy and I went over to KB Home yesterday to check out our future home? Daddy told the Sales Rep about you and today we got a surprise from them. The Sales Team at KB Home sent us this pot of beautiful pink flowers! Aren't they sweet? Logan, you have been bringing the kindness and generosity out of everybody. Mommy is so proud of you.
So, tomorrow is the big walk. Mommy will take tons of pictures to show you, and will tell you all about it. Remember to watch us up in heaven with all the other babies whose families are walking in their memory as well.
Love you,
Mommy
Mommy started off today on the wrong feet. Mommy forgot to do the Mission Mile poster for tomorrow's walk last night and was scrambling this morning to get it sent by 9 a.m. After messing it with for a while, it didn't work out as planned. I would have to print it out and bring that in tomorrow instead. During all this frustration, Mommy realized something. I thought I was fine. I was keeping myself busy this whole week with different errands, going to different places. Mommy didn't cry a whole lot. There were moments when I got teary-eyed, but I did fine for the most part. But when I was so frustrated and upset this morning, Mommy broke down. I wasn't doing as good as I thought I am. I was so upset at myself. I know it takes time, since you it's only been a week and two days since you left us, but I still miss you lots.
Did you hear Mommy and Daddy's voice today? We were at your new home visiting you, and brought you your toys that have kept you company when you were at the hospital. Mommy was also trying to salvage the roses that your grandparents gave you. Since we left the flowers there on Wednesday, we were unable to attend to them as there was no place to put them. Mommy was able to trim the roses and put them in a vase, and also put the potted chrysanthemum nicely on your temporary door. Mommy has also taken a 360 degree view of your new home because I know Ah Gung and Ah Po would like to know what your new home looks like.
We were at the office and tried to pick out a "door" for you. This is going to take some time because we want to get it right. We've made copies of the fonts and pictures that we like, and then Daddy and Mommy will decide what to write on your it. Mommy will definitely get it done before I go back to Macau. It's going to take a while before you have this new "door" to your new home. Hopefully, you will like it.
Remember Mommy told you Daddy and I went over to KB Home yesterday to check out our future home? Daddy told the Sales Rep about you and today we got a surprise from them. The Sales Team at KB Home sent us this pot of beautiful pink flowers! Aren't they sweet? Logan, you have been bringing the kindness and generosity out of everybody. Mommy is so proud of you.
Love you,
Mommy
A Busy Day!
Dear Baby,
Wow, Mommy had such a busy day today! It started when I dropped off your big brother from school at 9:30 a.m. and ended after I picked him up at arrived home at 7 p.m. Non-stop! Let me tell you what I did today.
After dropping your brother off at school, Daddy and Mommy went down to the location of our future home. It's the first meeting with the Superintendents and our future neighbors at our new townhome in Sunnyvale. We toured around the site and saw that the foundation has been poured. We will have more of these meetings in the future, showing us step-by-step how our home will be built. This is exciting! This is probably going to be the only meeting that Mommy could attend. When I go back to work, it would be difficult to come down to Sunnyvale. But Daddy will try to attend those meetings. We met our future neighbors, who we have met several times when going to the model homes. This family has a young baby daughter with Down Syndrome, and is about your age. The mommy asked me how you're doing, and I had to break the news to her. I know she's sad for us, as her daughter is going through some medical issues herself, and she could imagine the pain that we're going through. But it's nice to see friendly and familiar faces, and to know that they will be living right across from us in the future.
Mommy and Daddy then went back up to San Bruno and had lunch with my old high school friend, Auntie Julie and her husband Uncle Andy, who are visiting from New York. It's been many years since I last saw Auntie Julie. Mommy visited New York many years ago, and Auntie Julie was nice enough to let me stay at her place. Auntie Julie has been very supportive of what's going on and has asked her Church friends to pray for you. Aren't you a lucky little fellow?
Mommy and Daddy then went to another appointment at Kaiser for your big brother. We attended an orientation on the services that their Child Psychiatry Dept provided. We also talked to the psychologist a little bit about your big brother, as your big brother's school was concerned about some of his behaviors and suggested us get him evaluated for Autism. Mommy will have another phone interview with the doctor on Monday, and then will bring your big brother in on Wednesday. Please pray for your big brother. Make sure he's fine. Mommy is not sure how much more emotional stress she can take if your brother were to be diagnosed with Autism. Mommy deeply feels that he is fine, but is scared that the doctor would tell me otherwise.
Mommy's day continued with finally buying plane tickets to go back to Macau. Mommy and your big brother will be going back from May 12 to June 20. I know this is a long time, but Mommy wants to make sure we're back to cheer up Ah Po before her surgery. Your Uncle Carlos and Auntie Mena are also helping us plan our Hong Kong Disneyland trip. Oh, how I want you to be able to go to this "happiest place on earth" with us.
Mommy then went to Bank of The West in Burlingame to drop off the checks for the March for Babies Walk, and got some T-shirts for the walk on Saturday as well. Well, the sizes of the shirts are not perfect for everyone, but at least we have shirts! This is going to be exciting. Mommy also had a conference call with other mommy walkers earlier tonight. It's nice to hear everyone's story and how inspired they are to walk this Saturday. I am really looking forward to it. We all love you, honey, and this event is for you.
Mommy ended the day with attending your big brother's preschool Annual Spring Picnic. Mommy really didn't know what to expect, but was glad to have attended. Your big brother had a lot of fun eating all the fruits and cookies, and totally ignored the puppet show until after it's over. I guess for him food is more important than the puppet show. Mommy also saw how your big brother interacted with his friends. I was glad I didn't see any hitting. The other boy was a little 'wilder' than your big brother, but they mostly played nice. Not much damage, aside from sand in the hair.
Wow, Mommy had a long day! I would have to go to sleep soon. Tomorrow is another big day. Mommy and Daddy would be going to see you and to select your marker. Would you please inspire Mommy tomorrow so that I could select something you like? How about an angel? Mommy wants an angel to always watch over you because I know you will be our guardian angel from above.
I'll see you tomorrow, dear. Mommy will bring you some toys to keep you company, ok?
Miss you,
Mommy
Wow, Mommy had such a busy day today! It started when I dropped off your big brother from school at 9:30 a.m. and ended after I picked him up at arrived home at 7 p.m. Non-stop! Let me tell you what I did today.
After dropping your brother off at school, Daddy and Mommy went down to the location of our future home. It's the first meeting with the Superintendents and our future neighbors at our new townhome in Sunnyvale. We toured around the site and saw that the foundation has been poured. We will have more of these meetings in the future, showing us step-by-step how our home will be built. This is exciting! This is probably going to be the only meeting that Mommy could attend. When I go back to work, it would be difficult to come down to Sunnyvale. But Daddy will try to attend those meetings. We met our future neighbors, who we have met several times when going to the model homes. This family has a young baby daughter with Down Syndrome, and is about your age. The mommy asked me how you're doing, and I had to break the news to her. I know she's sad for us, as her daughter is going through some medical issues herself, and she could imagine the pain that we're going through. But it's nice to see friendly and familiar faces, and to know that they will be living right across from us in the future.
Mommy and Daddy then went back up to San Bruno and had lunch with my old high school friend, Auntie Julie and her husband Uncle Andy, who are visiting from New York. It's been many years since I last saw Auntie Julie. Mommy visited New York many years ago, and Auntie Julie was nice enough to let me stay at her place. Auntie Julie has been very supportive of what's going on and has asked her Church friends to pray for you. Aren't you a lucky little fellow?
Mommy and Daddy then went to another appointment at Kaiser for your big brother. We attended an orientation on the services that their Child Psychiatry Dept provided. We also talked to the psychologist a little bit about your big brother, as your big brother's school was concerned about some of his behaviors and suggested us get him evaluated for Autism. Mommy will have another phone interview with the doctor on Monday, and then will bring your big brother in on Wednesday. Please pray for your big brother. Make sure he's fine. Mommy is not sure how much more emotional stress she can take if your brother were to be diagnosed with Autism. Mommy deeply feels that he is fine, but is scared that the doctor would tell me otherwise.
Mommy's day continued with finally buying plane tickets to go back to Macau. Mommy and your big brother will be going back from May 12 to June 20. I know this is a long time, but Mommy wants to make sure we're back to cheer up Ah Po before her surgery. Your Uncle Carlos and Auntie Mena are also helping us plan our Hong Kong Disneyland trip. Oh, how I want you to be able to go to this "happiest place on earth" with us.
Mommy then went to Bank of The West in Burlingame to drop off the checks for the March for Babies Walk, and got some T-shirts for the walk on Saturday as well. Well, the sizes of the shirts are not perfect for everyone, but at least we have shirts! This is going to be exciting. Mommy also had a conference call with other mommy walkers earlier tonight. It's nice to hear everyone's story and how inspired they are to walk this Saturday. I am really looking forward to it. We all love you, honey, and this event is for you.
Mommy ended the day with attending your big brother's preschool Annual Spring Picnic. Mommy really didn't know what to expect, but was glad to have attended. Your big brother had a lot of fun eating all the fruits and cookies, and totally ignored the puppet show until after it's over. I guess for him food is more important than the puppet show. Mommy also saw how your big brother interacted with his friends. I was glad I didn't see any hitting. The other boy was a little 'wilder' than your big brother, but they mostly played nice. Not much damage, aside from sand in the hair.
I'll see you tomorrow, dear. Mommy will bring you some toys to keep you company, ok?
Miss you,
Mommy
Wednesday, April 22, 2009
Prayers... Support.... Love...
Do you know how lucky we are? We've been blessed with amazing friends. Do you know how much support and words of encouragement mommy has gotten from other mothers who have gone through what I am going through, just by reading each other's blog? This is such an amazing community. Do you know how Mommy got reconnected with old elementary friends that I haven't talked to in over 20 years, and they are also sending their love to us? I don't know how I am going to repay everyone's kindness and generosity. Mommy is really speechless. Honey, this is all because of you. Through you, I see kindness and generosity in everyone. Through you, I realize how lucky and blessed I am. Through you, I have hope that this world is a better place, because you have made me a better person.
Mommy wants to share with you a prayer that Auntie Shelley's aunt, Joan, has written for mommy. This is exactly how Mommy feels.
"Oh, God, I don't know how I can bare this pain. I miss my boy so much! Please help me, God. I'm not going to turn away from you, God. I don't understand why this happened. But I need you, God. I need to celebrate my son's beautiful little life. Thank you for entrusting me to be his mom. Being his mom was the most magnificent privilege of my life. He knows how much I love him. He brought out in me things I didn't know I had. I will never be the same. I am his mother. I love more deeply. I care more completely. He gave me these gifts. Take him in your arms, Lord, and squeeze him tight and say, "That's from your mommy and daddy." Help me to find a way to live without him. I am so glad that he is without pain and struggle. How lucky all of heaven is to have him there. I don't know how I'm going to make it through this day. I am your child, God. Do you love me half as much as I love my little boy? Will you help me? I'm not running away from you, no matter how much I don't understand. I am running to you. Please give me the grace I need make it through this day, and to celebrate Logan's life. Thank you for the gift of his life. Take good care of him. I trust that you love me, Lord. Please take care of me and my family."
Mommy's old elementary friends, Auntie Christine and Auntie Goretti, sent us "The Serenity Prayer"
Logan baby, please be all of our guardian angels and watch over our beloved friends.
Love,
Mommy
Love,
Mommy
Do not be afraid, you're not alone...
Hello Sweetheart,
I hope you don't feel too lonely in your new 'home'? Mommy was so careless and forgetful that I forgot to pack everything before this morning. I should have done this way ahead of time: to pack the little stuff animal that Auntie Stacy got you, the rattler that Uncle Kyle and Auntie Leonor gave you, and especially the pendant and necklace that Auntie Mena sent from Macau. I even forgot to bring our family pictures. Luckily, Mommy was able to print some pictures at Kinko's today before heading to Gate of Heaven. I don't want you to be lonely. You need to know that you will forever be in our hearts.
Mommy did good today. I was calm and did not cry like a baby. When I picked you up from the funeral home, you were in this beautiful urn. I am sad because I could never hold your tiny little hands, kiss you on your forehead, or rock you to sleep while singing lulabies to you anymore. But I was holding you tight while traveling up to the cemetery. I could see that Daddy and Grandma missed you just as much as I did. Grandma was holding you, and couldn't stop rubbing the urn, just like when she was holding you in her arms. Daddy and Mommy were sad knowing that Grandma, Ah Gung and Ah Po were all crying when you left us. This is so heartbreaking, even though we know you're in a better place.
Did you see the pretty roses that Grandma and Grandpa got you? How about the lovely pot of chrysanthemum that Uncle John brought for you? Of course, don't forget the family picture we took on Christmas morning with Ah Gung and Ah Po, and a picture with Grandma right before you were hospitalized. We were so happy then.
But seeing your tiny urn inside the huge grave, got us all very upset. We didn't know it's going to look like that. Grandma was so upset that we didn't get you a nice box, so that we could put you in, before you touching the soil. We thought there would be a metal frame of some sort in the soil. You looked so alone in there. It was such a huge space for you. I am so sorry. Mommy really didn't know what to expect. Please don't be afraid, we will bring you more flowers and stuff animals on Friday. On Friday, Daddy and Mommy will be up there again to design your marker, and to visit you. Unfortunately, we couldn't come tomorrow because we had a lot of errands to do. Mommy will tell you all about it tomorrow, ok?
Mommy knows you are finally at peace. I am relieved, though the sadness is still there. There are still moments when I miss you so much. But I think I am doing well. Reading about other mommie's stories, and writing to you, have been helpful.
Take care for now, Mommy will talk to you some more tomorrow.
Love you,
Mommy
I hope you don't feel too lonely in your new 'home'? Mommy was so careless and forgetful that I forgot to pack everything before this morning. I should have done this way ahead of time: to pack the little stuff animal that Auntie Stacy got you, the rattler that Uncle Kyle and Auntie Leonor gave you, and especially the pendant and necklace that Auntie Mena sent from Macau. I even forgot to bring our family pictures. Luckily, Mommy was able to print some pictures at Kinko's today before heading to Gate of Heaven. I don't want you to be lonely. You need to know that you will forever be in our hearts.
Did you see the pretty roses that Grandma and Grandpa got you? How about the lovely pot of chrysanthemum that Uncle John brought for you? Of course, don't forget the family picture we took on Christmas morning with Ah Gung and Ah Po, and a picture with Grandma right before you were hospitalized. We were so happy then.
But seeing your tiny urn inside the huge grave, got us all very upset. We didn't know it's going to look like that. Grandma was so upset that we didn't get you a nice box, so that we could put you in, before you touching the soil. We thought there would be a metal frame of some sort in the soil. You looked so alone in there. It was such a huge space for you. I am so sorry. Mommy really didn't know what to expect. Please don't be afraid, we will bring you more flowers and stuff animals on Friday. On Friday, Daddy and Mommy will be up there again to design your marker, and to visit you. Unfortunately, we couldn't come tomorrow because we had a lot of errands to do. Mommy will tell you all about it tomorrow, ok?
Mommy knows you are finally at peace. I am relieved, though the sadness is still there. There are still moments when I miss you so much. But I think I am doing well. Reading about other mommie's stories, and writing to you, have been helpful.
Take care for now, Mommy will talk to you some more tomorrow.
Love you,
Mommy
Missing you
Dear Baby,
Sorry Mommy didn't write to you yesterday. It was a long day and I just fell asleep with your big brother. We went over to KB Studio to select our carpet, flooring, cabinets, tiles, etc, etc, for our new home. When I saw the Disney packages, it almost brought tears to my eyes as I would really like to you to have the Winnie The Pooh room. That would be the perfect room for you.
Ah Po reminded Mommy that today marks a week of your passing. She is going to have a mass held on your behalf. According to Ah Po, that's what we do. Of course Mommy doesn't know all these things. I am not prepared to have to do this, not for my own child. Do you remember a week ago when you spent time with Daddy and Mommy? We both held you in our arms.
Mommy and Daddy will be picking up Grandma soon. Then we will drop off your big brother at school, and then head over to the funeral home to pick up your remains and the urn. We have selected a gold rectangular urn, with a teddy bear on the side. I hope you will like it. I am not sure how I would react when I see you and hold you. Either I will cry or I will be in a daze and don't know how to react. Your Uncle John and Father Peter will be joining us at the cemetery at 11 a.m. for your ceremony to bid our final goodbyes to you.
Mommy will see you in a little while, ok?
Love you,
Mommy
Sorry Mommy didn't write to you yesterday. It was a long day and I just fell asleep with your big brother. We went over to KB Studio to select our carpet, flooring, cabinets, tiles, etc, etc, for our new home. When I saw the Disney packages, it almost brought tears to my eyes as I would really like to you to have the Winnie The Pooh room. That would be the perfect room for you.
Ah Po reminded Mommy that today marks a week of your passing. She is going to have a mass held on your behalf. According to Ah Po, that's what we do. Of course Mommy doesn't know all these things. I am not prepared to have to do this, not for my own child. Do you remember a week ago when you spent time with Daddy and Mommy? We both held you in our arms.
Mommy and Daddy will be picking up Grandma soon. Then we will drop off your big brother at school, and then head over to the funeral home to pick up your remains and the urn. We have selected a gold rectangular urn, with a teddy bear on the side. I hope you will like it. I am not sure how I would react when I see you and hold you. Either I will cry or I will be in a daze and don't know how to react. Your Uncle John and Father Peter will be joining us at the cemetery at 11 a.m. for your ceremony to bid our final goodbyes to you.
Mommy will see you in a little while, ok?
Love you,
Mommy
Monday, April 20, 2009
I was gonna do this and that.. but...
Hi Sweetheart,
How are you doing today? Daddy was bugging Mommy for the last hour and a half on finalizing the options and upgrades for our new place. We are having our appointment with KB Home tomorrow. Daddy is always so last minute. Should have done this earlier so that it won't cut into my time in talking to you! When Mommy went to the model home, I saw this beautifully decorated nursery with a Winnie The Pooh theme. It was so pretty and I thought, maybe I could get that for your future room. I like the nice, comforting colors of green and yellow, and the stencils on the wall. The last time we went for our first appointment, before the diagnosis and all the bad news, I really wanted to get you that room. At the time, I knew the road ahead of us would be tough. But I was mentally prepared to do whatever it takes to get you home. I knew it would be difficult if you were to have the tracheostomy, but I was up for the challenge. Unfortunately, things have changed so much within the last 2-3 weeks. The dream of decorating a nursery for you is gone. I never really got to decorate one for your big brother, since we're only renting. Now that we're finally going to have our own place, I had big plans on decorating your room and your big brother's. Instead of decorating your room, we would have to decorate your lawn level marker for your grave. :(
Mommy didn't do much today. It was 95 degrees here and our house was just stuffy and hot. The only time Mommy got to breathe was when I was driving your big brother Aidan to and from school, while blasting the A/C. Mommy also called up four different travel agencies and price-check/compare the airfare to fly back to Macau to see Ah Gung and Ah Po. I tried to check the airfare and hotel packages to Hong Kong as well, so that we could head over to Disneyland. I think Mommy is just going to take your big brother on Eva, and then head to Hong Kong on the weekend with your uncle and auntie.
Mommy didn't get a chance to order the Family Team T-shirts for the walk this Saturday. Just when I was planning to order them and to see how many of our friends are going, that's when your diagnosis came in. I didn't have the mood or the energy to order the T-shirts. But now the walk is fast approaching, I am hoping I could get some shirts from the March of Dimes office. I think I am going to give them a call tomorrow, or I'll just go print some shirts myself. I should also call up the T-shirt company to see if they could Fedex it to me. If not, we'll just walk for the walk in your memory.
Love you,
Mommy
How are you doing today? Daddy was bugging Mommy for the last hour and a half on finalizing the options and upgrades for our new place. We are having our appointment with KB Home tomorrow. Daddy is always so last minute. Should have done this earlier so that it won't cut into my time in talking to you! When Mommy went to the model home, I saw this beautifully decorated nursery with a Winnie The Pooh theme. It was so pretty and I thought, maybe I could get that for your future room. I like the nice, comforting colors of green and yellow, and the stencils on the wall. The last time we went for our first appointment, before the diagnosis and all the bad news, I really wanted to get you that room. At the time, I knew the road ahead of us would be tough. But I was mentally prepared to do whatever it takes to get you home. I knew it would be difficult if you were to have the tracheostomy, but I was up for the challenge. Unfortunately, things have changed so much within the last 2-3 weeks. The dream of decorating a nursery for you is gone. I never really got to decorate one for your big brother, since we're only renting. Now that we're finally going to have our own place, I had big plans on decorating your room and your big brother's. Instead of decorating your room, we would have to decorate your lawn level marker for your grave. :(
Mommy didn't do much today. It was 95 degrees here and our house was just stuffy and hot. The only time Mommy got to breathe was when I was driving your big brother Aidan to and from school, while blasting the A/C. Mommy also called up four different travel agencies and price-check/compare the airfare to fly back to Macau to see Ah Gung and Ah Po. I tried to check the airfare and hotel packages to Hong Kong as well, so that we could head over to Disneyland. I think Mommy is just going to take your big brother on Eva, and then head to Hong Kong on the weekend with your uncle and auntie.
Mommy didn't get a chance to order the Family Team T-shirts for the walk this Saturday. Just when I was planning to order them and to see how many of our friends are going, that's when your diagnosis came in. I didn't have the mood or the energy to order the T-shirts. But now the walk is fast approaching, I am hoping I could get some shirts from the March of Dimes office. I think I am going to give them a call tomorrow, or I'll just go print some shirts myself. I should also call up the T-shirt company to see if they could Fedex it to me. If not, we'll just walk for the walk in your memory.
Love you,
Mommy
Sunday, April 19, 2009
Intimate Moments
Hi Sweetheart,
How are you doing today? Did you play with any angels? It's so hot today. Heat Wave in the middle of April. Our house traps heat and was so hot, actually it's still warm now. Couldn't wait for us to move down south where we have A/C in the house. Of course, our PG&E bill will be expensive since it's so hot down there. If you were here with us, you would only be wearing a short-sleeve onesie and I wouldn't have to worry about you catching a cold. That's always what I am worried about. One more hot summer and then we will have heat and a/c! I wish you could share this excitement with me. It's nice not to have to worry about you being too hot or too cold.
Daddy and Mommy took your big brother to the park/playground today. You've actually been here before as well. We went there with Ah Gung and Ah Po when they were visiting. You were sleeping the whole time, but we let you sit under the sun for a little while to get some Vitamin D. Ah Po actually captured one of your rare smiles in your sleep. It was such a cute picture. Aside from your rare smiles in your sleep, I've actually never seen a real smile from you. I remember thinking, after all the hard work during your monthly stay at the NICU, it would be a lovely reward if you could just flash me a smile. Unfortunately, I didn't have the pleasure of seeing that. I am glad Ah Po captured your sleeping smile, at least I could look at the picture and imagine you smiling at me.
It feels like when I am writing to you, that's our most intimate moment. During the day, it's hard to have any downtime when your big brother is around. Mommy also keeps herself busy with watching tv, reading blogs, and surfing online. But then, there are moments when Mommy would miss you so much. They usually occur when I am driving, taking a shower, or doing dishes. Other times, Mommy is busy enough so that she won't be missing you too much. But when writing these letters to you, I feel like I am really talking to you. Can you feel that?
Mommy has been researching to find plane tickets to go back to visit Ah Gung and Ah Po with your big brother. Mommy is worried about Ah Po's surgery and hoping your big brother could bring some joy to her. Ah Po was so heartbroken when she found out you have left us. Ah Po also told me that at the mass in Macau, your aunts, grandaunts and uncles came. You are truly loved by a lot of people, even those that have never met you. Mommy would never in a million years know that we're surrounded by so many loving people. Thanks to you, my angel, I now know and will be eternally grateful.
Take care, my dear. Mommy will talk to you tomorrow.
Love,
Mommy
How are you doing today? Did you play with any angels? It's so hot today. Heat Wave in the middle of April. Our house traps heat and was so hot, actually it's still warm now. Couldn't wait for us to move down south where we have A/C in the house. Of course, our PG&E bill will be expensive since it's so hot down there. If you were here with us, you would only be wearing a short-sleeve onesie and I wouldn't have to worry about you catching a cold. That's always what I am worried about. One more hot summer and then we will have heat and a/c! I wish you could share this excitement with me. It's nice not to have to worry about you being too hot or too cold.
Daddy and Mommy took your big brother to the park/playground today. You've actually been here before as well. We went there with Ah Gung and Ah Po when they were visiting. You were sleeping the whole time, but we let you sit under the sun for a little while to get some Vitamin D. Ah Po actually captured one of your rare smiles in your sleep. It was such a cute picture. Aside from your rare smiles in your sleep, I've actually never seen a real smile from you. I remember thinking, after all the hard work during your monthly stay at the NICU, it would be a lovely reward if you could just flash me a smile. Unfortunately, I didn't have the pleasure of seeing that. I am glad Ah Po captured your sleeping smile, at least I could look at the picture and imagine you smiling at me.
It feels like when I am writing to you, that's our most intimate moment. During the day, it's hard to have any downtime when your big brother is around. Mommy also keeps herself busy with watching tv, reading blogs, and surfing online. But then, there are moments when Mommy would miss you so much. They usually occur when I am driving, taking a shower, or doing dishes. Other times, Mommy is busy enough so that she won't be missing you too much. But when writing these letters to you, I feel like I am really talking to you. Can you feel that?
Mommy has been researching to find plane tickets to go back to visit Ah Gung and Ah Po with your big brother. Mommy is worried about Ah Po's surgery and hoping your big brother could bring some joy to her. Ah Po was so heartbroken when she found out you have left us. Ah Po also told me that at the mass in Macau, your aunts, grandaunts and uncles came. You are truly loved by a lot of people, even those that have never met you. Mommy would never in a million years know that we're surrounded by so many loving people. Thanks to you, my angel, I now know and will be eternally grateful.
Take care, my dear. Mommy will talk to you tomorrow.
Love,
Mommy
Saturday, April 18, 2009
Funeral Service
Dear Baby,
Mommy was scared this morning when visiting you at the funeral home for the final viewing. I was worried that the calm, peaceful image that I had of you last, would be destroyed and be replaced with a horrible image. I am so sorry, dear. But Mommy couldn't resist saying goodbye to you and looking at you one last time. You looked beautiful. I've never seen you looked so good. The funeral home had done an amazing job in making you look comfortable and peaceful, like you're a very healthy baby sleeping in your crib. Daddy and Mommy miss you so much. We knew you're in a better place, but we couldn't help but cry and want you to come home.
Did you see all the people who came today to say goodbye to you, especially Grandpa? We had over 50 friends and family to come celebrate your new life. You were so loved by everyone. They shed tears of sadness from missing you, but also tears of joy knowing you're in a better place. Mommy printed pictures of you and made two posters. One had pictures of only you while you're at home with us, those good two months when you're healthy and make us so happy. The other poster had pictures of you with Daddy, Mommy, Big Brother, Ah Gung, Ah Po, and Grandma. We all loved you so much and we loved taking pictures with you.
After mass, many people came to the restaurant to continue the celebration of your new life. Mommy was so happy to see everyone. It has been a long time since Mommy saw her friends. It was nice to catch up with them. They have all been so supportive of what we have gone through. It was nice to personally thank them for their love, support and prayers. Logan, we're very lucky. We're very blessed to have great people around us. Now that you are up in Heaven, you need to watch over all of us, ok?
When Mommy told Daddy that I was going to continue blogging, in the form of writing letters to you, Daddy was concerned. He's worried that Mommy won't be able to move on. But don't you worry, Mommy would be fine. Mommy wants you to know how much I miss you, but also wants to tell you what's going on in our lives. Writing letters to you might make me sad sometimes, but I think it's also therapeutic in a way. Don't you worry, baby. Mommy will continue on with her life, but Mommy will never forget you.
Watch over us, dear. On Wednesday, we will lay you to rest. You will have a new home, and we will visit you often.
Miss you dearly,
Mommy
Mommy was scared this morning when visiting you at the funeral home for the final viewing. I was worried that the calm, peaceful image that I had of you last, would be destroyed and be replaced with a horrible image. I am so sorry, dear. But Mommy couldn't resist saying goodbye to you and looking at you one last time. You looked beautiful. I've never seen you looked so good. The funeral home had done an amazing job in making you look comfortable and peaceful, like you're a very healthy baby sleeping in your crib. Daddy and Mommy miss you so much. We knew you're in a better place, but we couldn't help but cry and want you to come home.
Did you see all the people who came today to say goodbye to you, especially Grandpa? We had over 50 friends and family to come celebrate your new life. You were so loved by everyone. They shed tears of sadness from missing you, but also tears of joy knowing you're in a better place. Mommy printed pictures of you and made two posters. One had pictures of only you while you're at home with us, those good two months when you're healthy and make us so happy. The other poster had pictures of you with Daddy, Mommy, Big Brother, Ah Gung, Ah Po, and Grandma. We all loved you so much and we loved taking pictures with you.
After mass, many people came to the restaurant to continue the celebration of your new life. Mommy was so happy to see everyone. It has been a long time since Mommy saw her friends. It was nice to catch up with them. They have all been so supportive of what we have gone through. It was nice to personally thank them for their love, support and prayers. Logan, we're very lucky. We're very blessed to have great people around us. Now that you are up in Heaven, you need to watch over all of us, ok?
When Mommy told Daddy that I was going to continue blogging, in the form of writing letters to you, Daddy was concerned. He's worried that Mommy won't be able to move on. But don't you worry, Mommy would be fine. Mommy wants you to know how much I miss you, but also wants to tell you what's going on in our lives. Writing letters to you might make me sad sometimes, but I think it's also therapeutic in a way. Don't you worry, baby. Mommy will continue on with her life, but Mommy will never forget you.
Watch over us, dear. On Wednesday, we will lay you to rest. You will have a new home, and we will visit you often.
Miss you dearly,
Mommy
Thursday, April 16, 2009
Funeral Service on Saturday at 11:00 a.m.
Date: April 18, 2009 (Saturday)
Time: 11:00 a.m.
Place: St. Joseph of Cupertino
10110 North De Anza Boulevard
Cupertino, CA 95014
(map)
Reception to follow:
Great Buffet
20030 Stevens Creek Blvd
Cupertino, CA 95014
(directions from St. Joseph)
Time: 11:00 a.m.
Place: St. Joseph of Cupertino
10110 North De Anza Boulevard
Cupertino, CA 95014
(map)
Reception to follow:
Great Buffet
20030 Stevens Creek Blvd
Cupertino, CA 95014
(directions from St. Joseph)
Please join us in celebrating Logan's new life in Heaven. Our little lobster was loved by many during his short life. He will always be in our memories and our hearts.
We request that you do NOT send any flowers to the Church, but instead to donate to March for Babies or United Mitochondrial Disease Foundation.
Virginia will continue to participate in next Saturday's March for Babies in San Francisco. You are welcome to join us in the walk, in memory of Logan the Lobster.
We would also like to invite you to join us at the reception directly after mass at Great Buffet. We have always wanted to give Logan a big party when all his tubes were out, so we postponed his Red Egg and Ginger Party. At first, we thought he wouldn't need his nasal cannula a month after he was discharged from the NICU. Unfortunately, that didn't happen. Now that he is in Heaven, he is free from all suffering, and we would like to celebrate his new life.
If you have never met Logan, come and say "Hello". If you had the pleasure of meeting him, come and say "Goodbye".
Logan will be cremated and we will have a Graveside Committal Service at Gate of Heaven Catholic Cemetery next Wednesday. We would like to just limit that for the immediate family. However, you are welcome to visit Logan at Gate of Heaven after that. You can e-mail us for the information.
p.s. Happy 5 Months Old, Logan!
Wednesday, April 15, 2009
Rest In Peace, Logan
Logan Michael Lee
November 16, 2008 - April 15, 2009
Our dear Logan left us for a better life in heaven this afternoon. He has gone to a place where there is no needles, no tubes, and no suffering. He left us quietly and peacefully in the arms of his Daddy and Mommy, who love him very, very much, and are very proud of him.
We want you to remember Logan as a cute baby, before his hospitalization, and without a tube down his throat.
Funeral Mass will be in Cupertino this coming Saturday. Details will be posted in a day or so.
Thank you very much for all of your prayers. We know Logan is in heaven watching over us.
Monday, April 13, 2009
He looks comfortable
Day 43 - Hospital Stay
Day 38 - Intubated
Logan doesn't look as swollen today, which is good. The nurses gave him a nice bath, so that he doesn't stink. When I held him yesterday, I could smell his stinky, sour neck. During the bath, he didn't really open his eyes. He just did his usual coughing when the tube was irritating him, and when they suctioned his tube. I went over to him after the bath, to put the Elmo socks and his necklace/pendant back on his feet. I felt his chubby little thighs and sang him "Hush Little Baby". He slowly opened his eyes, and continued to open and close his eyes periodically. If Logan could hear, he would recognize that song. I sang that song to Aidan every night when I put him to bed, while Logan was inside my tummy. I sang that song to Logan when I was trying to put him to sleep when he was home. I remember he used to cry a lot at night, and we're not sure if it's the acid reflux, or colic, or he's just not comfortable. I would hold him, rock sideways and sing him the song. That usually calmed him down.
The Chief came in and asked if I wanted to hold him. I declined, especially, since he's opening his eyes. It's such a bittersweet moment. Trust me, I would love to hold him every single day, and kiss his head while I do that. But knowing his future and him being awake, holding him becomes heartbreaking. I don't think I am emotionally strong enough to do that. I'll just go by his bedside, feel his arms and legs, sing or talk to him every once in a while, so that he knows Mommy is still there.
Logan's blood pressure is a little low today. It just further shows that his body is getting tired. We have a few more days to make preparations. All I wish is for Logan to stay comfortable, and conscious enough to know that Daddy and Mommy are with him everyday and love him very, very much.
Day 38 - Intubated
Logan doesn't look as swollen today, which is good. The nurses gave him a nice bath, so that he doesn't stink. When I held him yesterday, I could smell his stinky, sour neck. During the bath, he didn't really open his eyes. He just did his usual coughing when the tube was irritating him, and when they suctioned his tube. I went over to him after the bath, to put the Elmo socks and his necklace/pendant back on his feet. I felt his chubby little thighs and sang him "Hush Little Baby". He slowly opened his eyes, and continued to open and close his eyes periodically. If Logan could hear, he would recognize that song. I sang that song to Aidan every night when I put him to bed, while Logan was inside my tummy. I sang that song to Logan when I was trying to put him to sleep when he was home. I remember he used to cry a lot at night, and we're not sure if it's the acid reflux, or colic, or he's just not comfortable. I would hold him, rock sideways and sing him the song. That usually calmed him down.
The Chief came in and asked if I wanted to hold him. I declined, especially, since he's opening his eyes. It's such a bittersweet moment. Trust me, I would love to hold him every single day, and kiss his head while I do that. But knowing his future and him being awake, holding him becomes heartbreaking. I don't think I am emotionally strong enough to do that. I'll just go by his bedside, feel his arms and legs, sing or talk to him every once in a while, so that he knows Mommy is still there.
Logan's blood pressure is a little low today. It just further shows that his body is getting tired. We have a few more days to make preparations. All I wish is for Logan to stay comfortable, and conscious enough to know that Daddy and Mommy are with him everyday and love him very, very much.
Sunday, April 12, 2009
Easter Celebration - Part 3 - Family and Friends
We started our Easter Sunday bright and early. We drove down to Cupertino for the 9:30 a.m. Easter Sunday mass at St. Joseph. Aidan was mostly well-behaved. He was fascinated with the numbers showing the hymns, as they changed periodically, instead of the old style where they posted all the hymns out for the whole mass. He would say "The number is off", or "The number is back on". He was able to tell me what the numbers were, so that we could turn our pages together to look for the hymn. He wanted to be held whenever we stood up, probably because he couldn't see much. He was the quietest I've seen him at a Church, much better behaved than Christmas. I guess my little boy is growing up, and observing and understanding when everyone had to be quiet.
We then head over to the hospital to visit Logan. We brought a basket of goodies for the doctors and nurses, and a little bucket for Logan. I also brought Logan a pair of new Elmo socks. Aidan was kept occupied most of the time with the laptop, so that he wouldn't run in and out, and cause trouble. Logan's face didn't look too much more swollen than yesterday. However, when I changed his socks, I noticed his feet were pretty swollen. He used to have cute little feet, but now the toes were getting smaller, while his soles were getting thicker.
Uncle Kyle & Auntie Leonor came to visit and brought us a lovely fruit basket. Uncle John (Hank's brother) & Auntie Katie also came to visit our little boy. The nurse was nice enough to let Hank and I hold Logan for a good 15-30 mins EACH. When I first held him, Logan opened one eye to see what was going on. When Hank was holding him, he was more awake, and opened his eyes for a very long time (closed periodically). He was wide awake right before we left. It was a very bittersweet moment to see him awake, and he seemed to recognize/sense us. I haven't seen his eyes in a few days. And on Easter Sunday, he recognized us, knew he had visitors, and appeared to be happy that we're there. But it also saddened me that we will soon not be able to experience this anymore. Happy thoughts! Happy thoughts! I plan to keep this Easter weekend posts happy. So, let's not talk about the sad things. We were able to take a good family picture while holding Logan. We were very happy about that.
Logan and his new Elmo socks.
Logan started to open his eyes more and was more awake while Daddy was holding him.
The lovely fruit basket from Uncle Kyle and Auntie Leonor. It was a HUGE hit with Aidan. I just realized I forgot to take a picture of you guys!
Uncle John and Auntie Katie
Logan's all wrapped up after his huge explosive diaper! Must be too comfy in daddy and mommy's arms.
Berry Apple Crisp and Classic Green Bean Casserole & Rustic Rolls
Pork Medallions and Cherry Sauce
Saturday, April 11, 2009
Easter Celebration - Part 2 - San Mateo Central Park Egg Hunt
We took Aidan for his second egg hunt at Central Park today. This year, he could enjoy it a lot more than last year. Last year he was still so young, he couldn't appreciate the puppet show, or what those plastic eggs were all about. I remember when we exchanged the plastic eggs for a small bottle of bubbles, he was so scared of the bubbles that he wanted nothing to do with them. Such a big difference this year. Now, he's obsessed with bubbles! However, this year they changed the bubbles for a bag of bunny crackers. Speaking of the egg hunt, it was madness! We had to run alllll the way to the end of the park to find two eggs. Aidan was doing good running half-way through the park, until he realized he's too slow. So, I picked him up and carried him with me until we finally spotted some eggs. Hank and I basically had to surround the eggs ourselves so other kids and parents wouldn't snatch them away. Some kids left with a full basket of eggs (over 8), while others had a couple, or none. Mostly, it was the parents going crazy. No matter how many eggs you get, you still only get ONE bag of crackers!
After we had lunch, we went over to the hospital to visit Baby Logan. Aidan is always happy to go to the hospital. He knows that Logan is there, and he's sleeping. Despite not paying much attention to Logan after saying "Hi" to him, I know Aidan likes to be around Logan. I know he still has good memories of Logan when he's home with us. I remember Aidan watching the same clip of Logan sucking his lips and he would replay that many many times. I want that to be the memory that Aidan will have of Logan. Aidan also received a bucket full of Easter goodies from the hospital. I think the bucket was for Logan, but since Logan can't fully appreciate it and the nurse saw Aidan today, she gave it to Aidan. He was happy to carry it around with him, but didn't really care much about the contents. He's too obsessed with the laptop. We were able to keep him quiet at the hospital because of the laptop.
Watching the puppet show
Sitting by the curb, enjoying his apple slices, while waiting for the parade to start.
Waiting in line with millions of people for the egg hunt to begin.
Finally, we found eggs!! Yay!!
Aidan LOVES the parachute!!
Chilling with daddy at the gazebo. Hank is actually sitting on the Easter Bunny's chair, where the bunny takes pictures with kids. No bunny in sight though.
Friday, April 10, 2009
Easter Celebration - Part 1 - Preschool
I left the hospital early today so that I could head over to Aidan's preschool for his little party. Well, apparently most of the parents have to work, and I was the only one that showed up and brought Hank's raisin cookies for the class. A parent brought in juice for all kids earlier in the morning, and one brought in Matzo (gotta celebrate Passover, too). I was actually sad to see that only 3 parents signed up to bring something to school. Maybe Easter isn't such a big deal to many families. Or, maybe there are just too many events like this throughout the school year that parents get sick of doing it. To me, it's more like it's Aidan's first school event that I attended. I will try to attend as many as possible. Enjoy the pictures!
Aidan at story time. He was actually able to sit still, but couldn't resist playing with another kid.
Aidan put on his bunny hat, holding his paper bag, and ready for the Egg Hunt!
"Oooo... I found a green egg!!"
Enjoying cookies made by daddy and the grape juice brought in by another parent. He wasn't a big fan of the Matzo.
Aidan always likes to swing like a monkey outside, before heading into the car.
I'm glad I showed up at Aidan's school. I think he really likes seeing me there. I'm glad to show him that despite all that is happening, Mommy will always be there for him as well.
The Decision
Day 40 - Hospital Stay
Day 35 - Intubated
I've been thinking about what to write today. Yesterday's meeting was as horrible as expected. I held up pretty well for the first half of the meeting, not shedding any tears. I thought I've cried enough the past week that my tears are all dried up. But towards the end, I couldn't hold up anymore. Deep down, we already know what our decision is, it's just hard to officially tell everyone about it to make it final.
With this heart-wrenching decision, comes with many, many, many more other decisions that we have to make and will affect our family. I'm not sure how we are going to do this. All I know is, we will be spending Easter together as a family.
Day 35 - Intubated
I've been thinking about what to write today. Yesterday's meeting was as horrible as expected. I held up pretty well for the first half of the meeting, not shedding any tears. I thought I've cried enough the past week that my tears are all dried up. But towards the end, I couldn't hold up anymore. Deep down, we already know what our decision is, it's just hard to officially tell everyone about it to make it final.
With this heart-wrenching decision, comes with many, many, many more other decisions that we have to make and will affect our family. I'm not sure how we are going to do this. All I know is, we will be spending Easter together as a family.
Thursday, April 9, 2009
Balancing Sodium
Day 39 - Hospital Stay
Day 34 - Intubated
Logan was baptized yesterday. Unfortunately, Hank got held up at work and by the time he arrived, he missed it by a few minutes. So, it was just me and the priest. I am hoping a miracle will come, or God will give me a sign and tell me what's best for my baby.
Logan's face looked a little more swollen today than yesterday. I immediately asked the nurse what his sodium level is, and it was down a little to 131. His vitals are stable, and his oxygen level remains at 100%, unless he coughs or gets upset. He only had 3 stools yesterday, probably because he's not on antibiotics anymore. Intensivist decided to supplement him with sodium, give him some diuretics and watch his urine output. She wants to make sure the sodium level doesn't go too low because it will cause swelling in the brain. We definitely do not want his brain to go any worse than it is. We also talked about his Ativan level. It's been decreased to 0.2ml. Logan looks too comfortable even with such a low dosage. I don't think the tube bothers him much anymore, or he's not feeling it at all. He probably doesn't need the sedation medication. However, the neurologist commented that the Ativan also keeps the seizure at bay. With the results of the EEG and the MRI, he's concerned that if we don't give him or further decrease his amount, he might seize. Even though he doesn't need the sedation medicine to sedate him, I told them to keep it, just in case he seizes. We don't want any seizures. We should at least keep it until our big family meeting this afternoon. I also asked how we can tell if the vitamins that he's getting are doing their job. Neurologist said it's hard to say. We can't tell if the vitamins are slowing the deteriorating or not, and we can't tell if his cells are actually absorbing the vitamins. They will just continue to give him the recommended dose.
I probably won't blog much for the rest of the day. Logan will probably be stable for a while. I might blog about the results of the family meeting tomorrow.
Day 34 - Intubated
Logan was baptized yesterday. Unfortunately, Hank got held up at work and by the time he arrived, he missed it by a few minutes. So, it was just me and the priest. I am hoping a miracle will come, or God will give me a sign and tell me what's best for my baby.
Logan's face looked a little more swollen today than yesterday. I immediately asked the nurse what his sodium level is, and it was down a little to 131. His vitals are stable, and his oxygen level remains at 100%, unless he coughs or gets upset. He only had 3 stools yesterday, probably because he's not on antibiotics anymore. Intensivist decided to supplement him with sodium, give him some diuretics and watch his urine output. She wants to make sure the sodium level doesn't go too low because it will cause swelling in the brain. We definitely do not want his brain to go any worse than it is. We also talked about his Ativan level. It's been decreased to 0.2ml. Logan looks too comfortable even with such a low dosage. I don't think the tube bothers him much anymore, or he's not feeling it at all. He probably doesn't need the sedation medication. However, the neurologist commented that the Ativan also keeps the seizure at bay. With the results of the EEG and the MRI, he's concerned that if we don't give him or further decrease his amount, he might seize. Even though he doesn't need the sedation medicine to sedate him, I told them to keep it, just in case he seizes. We don't want any seizures. We should at least keep it until our big family meeting this afternoon. I also asked how we can tell if the vitamins that he's getting are doing their job. Neurologist said it's hard to say. We can't tell if the vitamins are slowing the deteriorating or not, and we can't tell if his cells are actually absorbing the vitamins. They will just continue to give him the recommended dose.
I probably won't blog much for the rest of the day. Logan will probably be stable for a while. I might blog about the results of the family meeting tomorrow.
Aidan, Autistic?
Yes, that question came up again yesterday. As I was driving to Aidan's pre-school to pick him up yesterday, I received a phone call from the Director of the school. She wanted to set up a time to discuss some of Aidan's behaviors that they are concerned about. When I arrived at the preschool, I briefly chatted with her. They are a little concerned about his obsession with opening and closing doors, washing his hands, and interacting with other children. Apparently, they observed Aidan pushing a kid, even though he wasn't provoked or the kid wasn't in his way. As if he wanted to get their attention, but did not know how to approach the kid, except to hit or push. Aidan would run around in circles and when he stopped, he had this daze-like look. She recommended me contacting the school district to have a specialist to observe Aidan's behavior. They would e-mail me notes of what the teachers have observed, and the specialist could come to school to observe Aidan as well.
I personally, do not think Aidan is autistic. He is very affectionate, has great eye contact, and loves to smile and makes up funny faces. He is obsessed with doors, traffic lights and elevators. If we have to categorize him, I would say he is more obsessive-compulsive with poor impulse control, and maybe ADHD since he likes to run around and can't sit down. But then, aren't most 3-year olds like that? Do we always have to be overly sensitive and label our children so that we can find the 'correct' diagnosis? Can't children be like children, run around and have fun anymore?
I am not a specialist, so I can't say what I think is right. If Aidan is autistic, it's best to start therapy to help him. I am not opposed to contacting the school district to have him evaluated. It would give me the peace of him if he's ok. If not, we'll do whatever intervention necessary to help him. Most importantly, if I don't do it, the school might bug me again in the future. Let's just put the issue at rest by doing what's best for Aidan.
How much stress can one endure emotionally, psychologically, physically, before the body breaks or shuts down?
I personally, do not think Aidan is autistic. He is very affectionate, has great eye contact, and loves to smile and makes up funny faces. He is obsessed with doors, traffic lights and elevators. If we have to categorize him, I would say he is more obsessive-compulsive with poor impulse control, and maybe ADHD since he likes to run around and can't sit down. But then, aren't most 3-year olds like that? Do we always have to be overly sensitive and label our children so that we can find the 'correct' diagnosis? Can't children be like children, run around and have fun anymore?
I am not a specialist, so I can't say what I think is right. If Aidan is autistic, it's best to start therapy to help him. I am not opposed to contacting the school district to have him evaluated. It would give me the peace of him if he's ok. If not, we'll do whatever intervention necessary to help him. Most importantly, if I don't do it, the school might bug me again in the future. Let's just put the issue at rest by doing what's best for Aidan.
How much stress can one endure emotionally, psychologically, physically, before the body breaks or shuts down?
Wednesday, April 8, 2009
EEG, MRI, Eye exam and Baptism
Day 38 - Hospital Stay
Day 33 - Intubated
Logan's sodium level is back at a good 134, down from 127 at his worst. They will continue to monitor his sodium level. They will giving him even more concentrated formula at 26 cal, and maybe some diuretics to lose the excess water. His urine output was good, as well as his dirty diapers. Today is his last day of antibiotics, so hopefully, the diarrhea will stop soon. But do we want it to stop, since it helps getting rid of more water? At least his little bottom won't turn red again.
I have requested to speak to a Catholic priest. I have not been the best Catholic in recent years. However, I need some guidance. I want Logan to be baptized. Maybe a miracle will happen after he's baptized, or it might give him and us some peace.
We will have our big meeting with the Geneticists, Intensivists, Neurologist and other specialists tomorrow at 3:30 p.m. This is it. The big one. This will be the worst meeting of my life.
10:30 a.m. - Logan is down at MRI at the moment. Logan opened his eyes during transport and was moving a bit. Maybe he knows something is going on? I was chatting with the Chief earlier, when she was accompanying Logan to the MRI room and getting him set-up. She just talked to the neurologist regarding the EEG result. I knew it's going to be bad news. The result was a lot worse than the one he had a month ago. He is showing some seizure-like activities, and he's not very responsive. His waves are basically all over the place. The Chief said we might actually see him seize in the near future. Because of Leigh's disease, anti-seizure medication is probably not going to help. I do NOT want to see Logan seize. I just want to see him calmly sleeping.
11:10 a.m. - I just heard that Logan will be back up soon. I already know the MRI will show more strokes and more damages to his brain. I can't imagine how one month can change everything.
11:20 a.m.- Neurologist stopped by, basically confirming what the Chief said. He asked me what I want to do in case of giving Logan anti-seizure medication. He said he won't base a treatment solely on the result of the EEG, but on Logan overall as being Logan. I told him I just want Logan to be comfortable. I asked him how responsive is Logan in regards to me touching him. He explained Logan is like having a flu, he might respond but because he's so sick, it might not be the appropriate response that we're looking for. The EEG technician tickled Logan's chin and toes yesterday during the EEG, but did not see much brain activities going on.
11:45 a.m. - Logan is back and has his eyes open. I just talked to a priest. He will come and baptize Logan at 4 p.m. and will talk to me about what I should do. I hate to be one of those people who turn to God whenever there's a crisis. But I really don't know what to do.
1:00 p.m. - Just talked to the Opthamalogist regarding the findings of the eye exam. As expected, things have gotten worse. In the past exam, it was noted that Logan had a cherry red spot, but he was still able to see light and transmit it to the brain. The cherry red spot is not red any more. Blood hasn't been transported through the blood vessel, and the spot has become blanched. The layers that is in the retina are slowly become smaller, as well as the blood vessels. Signal of the light no longer transmits to the brain. He said in a few weeks, there may not be enough blood to flow through the optic nerve to the brain. I guess basically, anything that can go wrong, has gone wrong.
2:00 p.m. - Intensivist came in to talk to me and gave me the result of the MRI. There are more strokes in the basal ganglia and the brain stem. It's more and more difficult to be optimistic after test and test prove that there's no light at the end of the tunnel. I would be lying if I say I haven't thought of the unthinkable option of letting him go. I can't decide right now. I don't know if we should continue to be optimistic to give Logan a chance to fight, or to let him rest so that he doesn't have to fight anymore. His respiration rate dropped just now and took a minute or two to bring that back up. Maybe he's getting tired. I don't know what's best for him anymore.
Day 33 - Intubated
Logan's sodium level is back at a good 134, down from 127 at his worst. They will continue to monitor his sodium level. They will giving him even more concentrated formula at 26 cal, and maybe some diuretics to lose the excess water. His urine output was good, as well as his dirty diapers. Today is his last day of antibiotics, so hopefully, the diarrhea will stop soon. But do we want it to stop, since it helps getting rid of more water? At least his little bottom won't turn red again.
I have requested to speak to a Catholic priest. I have not been the best Catholic in recent years. However, I need some guidance. I want Logan to be baptized. Maybe a miracle will happen after he's baptized, or it might give him and us some peace.
We will have our big meeting with the Geneticists, Intensivists, Neurologist and other specialists tomorrow at 3:30 p.m. This is it. The big one. This will be the worst meeting of my life.
10:30 a.m. - Logan is down at MRI at the moment. Logan opened his eyes during transport and was moving a bit. Maybe he knows something is going on? I was chatting with the Chief earlier, when she was accompanying Logan to the MRI room and getting him set-up. She just talked to the neurologist regarding the EEG result. I knew it's going to be bad news. The result was a lot worse than the one he had a month ago. He is showing some seizure-like activities, and he's not very responsive. His waves are basically all over the place. The Chief said we might actually see him seize in the near future. Because of Leigh's disease, anti-seizure medication is probably not going to help. I do NOT want to see Logan seize. I just want to see him calmly sleeping.
11:10 a.m. - I just heard that Logan will be back up soon. I already know the MRI will show more strokes and more damages to his brain. I can't imagine how one month can change everything.
11:20 a.m.- Neurologist stopped by, basically confirming what the Chief said. He asked me what I want to do in case of giving Logan anti-seizure medication. He said he won't base a treatment solely on the result of the EEG, but on Logan overall as being Logan. I told him I just want Logan to be comfortable. I asked him how responsive is Logan in regards to me touching him. He explained Logan is like having a flu, he might respond but because he's so sick, it might not be the appropriate response that we're looking for. The EEG technician tickled Logan's chin and toes yesterday during the EEG, but did not see much brain activities going on.
11:45 a.m. - Logan is back and has his eyes open. I just talked to a priest. He will come and baptize Logan at 4 p.m. and will talk to me about what I should do. I hate to be one of those people who turn to God whenever there's a crisis. But I really don't know what to do.
1:00 p.m. - Just talked to the Opthamalogist regarding the findings of the eye exam. As expected, things have gotten worse. In the past exam, it was noted that Logan had a cherry red spot, but he was still able to see light and transmit it to the brain. The cherry red spot is not red any more. Blood hasn't been transported through the blood vessel, and the spot has become blanched. The layers that is in the retina are slowly become smaller, as well as the blood vessels. Signal of the light no longer transmits to the brain. He said in a few weeks, there may not be enough blood to flow through the optic nerve to the brain. I guess basically, anything that can go wrong, has gone wrong.
2:00 p.m. - Intensivist came in to talk to me and gave me the result of the MRI. There are more strokes in the basal ganglia and the brain stem. It's more and more difficult to be optimistic after test and test prove that there's no light at the end of the tunnel. I would be lying if I say I haven't thought of the unthinkable option of letting him go. I can't decide right now. I don't know if we should continue to be optimistic to give Logan a chance to fight, or to let him rest so that he doesn't have to fight anymore. His respiration rate dropped just now and took a minute or two to bring that back up. Maybe he's getting tired. I don't know what's best for him anymore.
Tuesday, April 7, 2009
Don't tell my mom...
My dear relatives:
I know you have been following Logan's blog and sending us good thoughts and prayers. We greatly appreciate it. If you happen to talk to my mom, please do NOT let her know the seriousness of Logan's illness. Mom's health has not been very good lately. In anticipation of her surgery in May, we need her to take good care of herself. She is constantly worrying about Logan, not eating or sleeping well. All I am going to tell her is that we're still waiting for blood test results and Logan is stable. Please help us with this.
Thanks,
Virginia
I know you have been following Logan's blog and sending us good thoughts and prayers. We greatly appreciate it. If you happen to talk to my mom, please do NOT let her know the seriousness of Logan's illness. Mom's health has not been very good lately. In anticipation of her surgery in May, we need her to take good care of herself. She is constantly worrying about Logan, not eating or sleeping well. All I am going to tell her is that we're still waiting for blood test results and Logan is stable. Please help us with this.
Thanks,
Virginia
It's just going downhill from now on...
Day 37 - Hospital Stay
Day 32 - Intubated
Logan's sodium level continues to go up and down. He has the Syndrome of Inappropriate Antidiuretic Hormone (SIADH). His brain is basically not regulating the kidney to do it's job to control the amount of water in his body. If they feed him, his sodium level drops and messes up the electrolytes in his system. But, they cannot not feed him. It's a catch-22. The only thing they could do now is to decrease the amount of feed at a rate of 10 with concentrated 24 cal formula. He's been having periodic episodes where his face will swell from retaining too much water. He has enough wet diapers, but not enough to get all the excess out.
More physical tests will be arranged for Logan to get a better understanding of how his little body is doing. MRI is scheduled for tomorrow. An Opthamalogist will be consulted to see him again. Will also do an EEG to see if his brain is responding, or if he's having any seizures that we're unaware of. We're trying to gather as much objective information as possible before meeting with the Geneticist, hopefully, on Thursday.
Deep down, I can sense that he's not getting any better. I've been questioning why he's so calm even with so little sedation. A couple weeks ago, the nurses had to keep giving him medication to keep him comfortable. Now, he's only on 0.3ml Ativan, and the tube doesn't bother him a bit. Even though his eyes are open, I think he is losing his ability to sense any outside stimuli. His breathing pattern is becoming erratic again. He's having long pauses in between breaths. He was doing so good 2 days ago, or at least I thought so. His right face starts to twitch a little. These are all my very subjective observations. That's why we need all the other objective tests to tell us what's really going on inside Logan.
I've been trying so hard to keep that nasty picture of him dying in my arms. Just a few days ago, I thought we made a comfortable decision that we could live with. Now, we have to re-visit the painful process again. This is all going too fast. He's not even 5 months old.
Day 32 - Intubated
Logan's sodium level continues to go up and down. He has the Syndrome of Inappropriate Antidiuretic Hormone (SIADH). His brain is basically not regulating the kidney to do it's job to control the amount of water in his body. If they feed him, his sodium level drops and messes up the electrolytes in his system. But, they cannot not feed him. It's a catch-22. The only thing they could do now is to decrease the amount of feed at a rate of 10 with concentrated 24 cal formula. He's been having periodic episodes where his face will swell from retaining too much water. He has enough wet diapers, but not enough to get all the excess out.
More physical tests will be arranged for Logan to get a better understanding of how his little body is doing. MRI is scheduled for tomorrow. An Opthamalogist will be consulted to see him again. Will also do an EEG to see if his brain is responding, or if he's having any seizures that we're unaware of. We're trying to gather as much objective information as possible before meeting with the Geneticist, hopefully, on Thursday.
Deep down, I can sense that he's not getting any better. I've been questioning why he's so calm even with so little sedation. A couple weeks ago, the nurses had to keep giving him medication to keep him comfortable. Now, he's only on 0.3ml Ativan, and the tube doesn't bother him a bit. Even though his eyes are open, I think he is losing his ability to sense any outside stimuli. His breathing pattern is becoming erratic again. He's having long pauses in between breaths. He was doing so good 2 days ago, or at least I thought so. His right face starts to twitch a little. These are all my very subjective observations. That's why we need all the other objective tests to tell us what's really going on inside Logan.
I've been trying so hard to keep that nasty picture of him dying in my arms. Just a few days ago, I thought we made a comfortable decision that we could live with. Now, we have to re-visit the painful process again. This is all going too fast. He's not even 5 months old.
Monday, April 6, 2009
Hope is taken away from us...
Just when I made peace with my decision of a trach and g-tube for Logan, life threw me a curve ball to test all of us.
LEIGH'S DISEASE
(Chinese definition below, after the English version)
Definition
Leigh syndrome is an early onset, progressive neurological disease that involves defects in the normal function of the mitochondria. The mitochondrion is a small organelle located in most cells and is responsible for producing energy for cells and tissues throughout the body.
Description
Leigh syndrome is caused by defective cellular respiration that supplies many tissues with energy. The disorder is severe and can be particularly difficult for family members, as infants are among the severely affected. Leigh syndrome is also known as necrotizing encephalopathy.
Demographics
Leigh syndrome is a very rare disease that affects different peoples relatively equally. Some studies have shown that more males are affected than females.
Causes and symptoms
In Leigh syndrome, symptoms usually develop within the first year of life; rarely, symptoms can develop during later childhood. The infant usually initially develops symptoms that include hypotonia (decreased muscle tone), vomiting, and ataxia (balance or coordination abnormalities). Overall, failure to grow and thrive is usually the primary reason parents seek medical help. Eventually, the infant experiences seizures, lactic acidosis (an excess of lactic acid, a normal product of carbohydrate metabolism, in the body), and respiratory and kidney impairment.
Various abnormalities of the eyes are also common in Leigh syndrome. Ophthalmoplegia (paralysis of some or all of the muscles of the eye) is a typical finding, along with optic atrophy (degeneration of the optic nerve) and pigmentary retinopathy, a disorder that eventually leads to blindness.
On the cellular level, persons with Leigh syndrome have an inability to produce ATP (an energy source for the cell) in the mitochondria. Tissues that are not provided with adequate energy replenishment usually die. Irreversible damage can occur first in cells requiring much energy, such as the brain, leading to mental impairments and developmental delay. Many parts of the brain are affected by the lack of ATP in Leigh disease, including the basal ganglia, which helps regulate motor performance; the brainstem, which controls the functions of breathing, swallowing, seeing, and hearing; and the cerebellum, which coordinates balance and voluntary muscle movement.
Several genetic causes explain how persons develop Leigh disease, and several genes are involved. These genes include defects found in nuclear DNA as well as the smaller, less widely known mitochondrial DNA. Genes from both genomes contribute to the normal function of the mitochondria. Mutations in genes from the nuclear and the mitochondrial DNA have both been implicated in Leigh disease.
Diagnosis
In general, diagnosis of Leigh syndrome is often difficult due to the broad variability in clinical symptoms as well as the many different genetic explanations that cause this disease. Genetic testing for specific nuclear or mitochondrial DNA mutation is helpful in this regard.
Laboratory studies can assist in the diagnosis of Leigh syndrome. A muscle biopsy often determines if there are abnormalities associated with the mitochondria. Additionally, as the mitochondria are responsible for producing energy, a deficiency in a protein complex that has an important function in the mitochondria is often detected. In Leigh syndrome, this deficiency is found in one of five complexes that make up the mitochondrial respiratory system. One of these complexes, complex IV, or cytochrome c oxidase (COX), is commonly deficient. Although a COX deficiency is associated with Leigh syndrome, it can also indicate other mitochondrial abnormalities. Similarly, there are mutations found in other complexes that can cause Leigh syndrome.
Treatment team
Treatment for Leigh syndrome is aimed at easing the disease-related symptoms and involves neurologists, pediatricians, clinical geneticists, nurses, and other related caretakers. Psychological counseling and support for family members caring for a child with Leigh disease is often encouraged.
Treatment
Currently, there is no treatment that is effective in slowing the progression of Leigh disease. Thiamine or vitamin B1 is usually given. Sodium bicarbonate may also be prescribed to help manage lactic acidosis.
Recovery and rehabilitation
As there is no cure for Leigh disease and the nature of the disorder is rapidly progressive, maintaining function for as long as possible is the primary focus rather than recovery. Physical therapists often assist in exercises designed to maintain strength and range of motion. As the disease progresses, occupational therapists can provide positioning devices for comfort.
Clinical trials
As of early 2004, there are no clinical trials to treat or cure Leigh syndrome. However, studies are underway to better understand all mitochondrial diseases in an effort to identify treatments and, eventually, a cure.
Prognosis
Soon after the onset of symptoms, the progression of Leigh disease is unrelentingly rapid. Death usually occurs from respiratory failure within two years following the initial symptoms, and usually by age six.
LEIGH'S DISEASE
(Chinese definition below, after the English version)
Definition
Leigh syndrome is an early onset, progressive neurological disease that involves defects in the normal function of the mitochondria. The mitochondrion is a small organelle located in most cells and is responsible for producing energy for cells and tissues throughout the body.
Description
Leigh syndrome is caused by defective cellular respiration that supplies many tissues with energy. The disorder is severe and can be particularly difficult for family members, as infants are among the severely affected. Leigh syndrome is also known as necrotizing encephalopathy.
Demographics
Leigh syndrome is a very rare disease that affects different peoples relatively equally. Some studies have shown that more males are affected than females.
Causes and symptoms
In Leigh syndrome, symptoms usually develop within the first year of life; rarely, symptoms can develop during later childhood. The infant usually initially develops symptoms that include hypotonia (decreased muscle tone), vomiting, and ataxia (balance or coordination abnormalities). Overall, failure to grow and thrive is usually the primary reason parents seek medical help. Eventually, the infant experiences seizures, lactic acidosis (an excess of lactic acid, a normal product of carbohydrate metabolism, in the body), and respiratory and kidney impairment.
Various abnormalities of the eyes are also common in Leigh syndrome. Ophthalmoplegia (paralysis of some or all of the muscles of the eye) is a typical finding, along with optic atrophy (degeneration of the optic nerve) and pigmentary retinopathy, a disorder that eventually leads to blindness.
On the cellular level, persons with Leigh syndrome have an inability to produce ATP (an energy source for the cell) in the mitochondria. Tissues that are not provided with adequate energy replenishment usually die. Irreversible damage can occur first in cells requiring much energy, such as the brain, leading to mental impairments and developmental delay. Many parts of the brain are affected by the lack of ATP in Leigh disease, including the basal ganglia, which helps regulate motor performance; the brainstem, which controls the functions of breathing, swallowing, seeing, and hearing; and the cerebellum, which coordinates balance and voluntary muscle movement.
Several genetic causes explain how persons develop Leigh disease, and several genes are involved. These genes include defects found in nuclear DNA as well as the smaller, less widely known mitochondrial DNA. Genes from both genomes contribute to the normal function of the mitochondria. Mutations in genes from the nuclear and the mitochondrial DNA have both been implicated in Leigh disease.
Diagnosis
In general, diagnosis of Leigh syndrome is often difficult due to the broad variability in clinical symptoms as well as the many different genetic explanations that cause this disease. Genetic testing for specific nuclear or mitochondrial DNA mutation is helpful in this regard.
Laboratory studies can assist in the diagnosis of Leigh syndrome. A muscle biopsy often determines if there are abnormalities associated with the mitochondria. Additionally, as the mitochondria are responsible for producing energy, a deficiency in a protein complex that has an important function in the mitochondria is often detected. In Leigh syndrome, this deficiency is found in one of five complexes that make up the mitochondrial respiratory system. One of these complexes, complex IV, or cytochrome c oxidase (COX), is commonly deficient. Although a COX deficiency is associated with Leigh syndrome, it can also indicate other mitochondrial abnormalities. Similarly, there are mutations found in other complexes that can cause Leigh syndrome.
Treatment team
Treatment for Leigh syndrome is aimed at easing the disease-related symptoms and involves neurologists, pediatricians, clinical geneticists, nurses, and other related caretakers. Psychological counseling and support for family members caring for a child with Leigh disease is often encouraged.
Treatment
Currently, there is no treatment that is effective in slowing the progression of Leigh disease. Thiamine or vitamin B1 is usually given. Sodium bicarbonate may also be prescribed to help manage lactic acidosis.
Recovery and rehabilitation
As there is no cure for Leigh disease and the nature of the disorder is rapidly progressive, maintaining function for as long as possible is the primary focus rather than recovery. Physical therapists often assist in exercises designed to maintain strength and range of motion. As the disease progresses, occupational therapists can provide positioning devices for comfort.
Clinical trials
As of early 2004, there are no clinical trials to treat or cure Leigh syndrome. However, studies are underway to better understand all mitochondrial diseases in an effort to identify treatments and, eventually, a cure.
Prognosis
Soon after the onset of symptoms, the progression of Leigh disease is unrelentingly rapid. Death usually occurs from respiratory failure within two years following the initial symptoms, and usually by age six.
*information taken from Healthline.
前言： 童年期腦脊髓病變 (Leigh’s disease) 是一種罕見的神經代謝異常之遺傳疾病，其特色是中樞神經的退化。
病因學： 目前已知有四種造成退化性腦病變的遺傳因素
1.pyruvate dehydrogenase complex deficiency
2.Complex I deficiency
3.Complex IV (COX) deficiency
4.Complex V (ATPase) deficiency。
這些缺陷可能是透過體染色體隱性的遺傳方式，如 COX deficiency；或是X-linked的遺傳方式，如PDH Eα deficinecy；或是由母系遺傳而來，如 complex V deficiency。
臨床表徵： 童年期腦脊髓病變 (Leigh’s disease) 是一種急速惡化的疾病，經常開始於3個月至2歲之間。在小孩最常被注意到的症狀可能是吸允力差，頭部控制功能消失，及之前的一些運動技巧消失。這些症狀亦可能伴隨食慾變差、嘔吐、躁動不安、持續哭鬧或抽慉等。
隨著症狀的惡化，可能伴隨有全身無力、肌肉張力消失、乳酸中毒的發作。酸酸中毒是因乳酸堆積在腦部而影響呼吸和腎臟的功能。心臟的問題也可能發生。童年期 腦脊髓病變(Leigh’s disease)有少數的病例可能在青少年晚期或兒童期早期才發生，而這些病歷其疾病惡化的程度可能比典型的童年期腦脊髓病變(Leigh’s disease)來得慢。
診斷： (一)影像學檢查
電腦斷層或核磁共振掃描可見在基底核處有兩側對稱性的低信號區域。
(二)病理學發現
於視丘、基底核、被蓋(tegmental)的灰質區域、腦室周圍、大腦導水管外圍區域、及腦幹和脊柱的後側區域可見局部對稱性的壞死性區域。
(三)顯微鏡的發現
於這些海綿狀的病灶處可見神經細胞減少性的囊狀空洞化、去髓鞘化及血管性增生的現象。
(四)血清學檢查
Lactate值會升高。
治療： 1.最常用於治療童年期腦脊髓病變 (Leigh’s disease) 是服用thiamine（vitamin B1）。在一些有pyrurate dehydrogenase enzyme complex 減少的病人，則可給予高脂肪、低碳水化合物的飲食控制。
2.口服碳酸鈉或檸檬酸鈉(sodium citrate)也可用於治療乳酸中毒。
預後： 退化性腦病變 (Leigh’s disease) 的癒復極差。通常會在幾年後便死亡，偶而可見病人活至6~7歲，某些病人甚至可活至十幾歲。那些於第一次疾病發作之後存活下來的病人，大多不易完全復原，之後多會持續性地朝著同一方向逐漸惡化而終至死亡。
*information taken from Web Services for Genetic Disease
He opened his eyes today again!
*I forgot to mention that I would like to thank Kerry and Marg for bringing over some delicious soups yesterday. Thanks for coming by, sharing laughs and girly chats with me!
Day 36 - Hospital Stay
Day 31 - Intubated
Came in just in time to do rounds. The nurses and the student nurse were trying to change Logan's ng tube. Of course he didn't like it. Who likes to have a tube through one of your nostrils and then down into the stomach. I hated doing that for him when he was first discharged from the NICU at 1 month. It's not as difficult as it seems, but still sucks doing that for your baby.
Rounds:
Logan lost a little weight, weighing 7.1 kg as he hasn't had any feeds since yesterday. His sodium level is at 132, still not quite back to the 135 range. His level wasn't really slowly building up; it went up a little, and down a little, and settled at 132 at his last blood drawn. In order to make sure he is having his nutrition, they are starting his feeds again at a rate of 30 ml/hour, down from 50. A consult will be made to Nutrition to decide if we should continue with this rate, or to give him a more concentrated formula. His sodium and glucose level will be checked every 6 hours (poke one less time than yesterday). Poor thing, his heels are scarred again. This is the time when I wish he has his central line, so that they can draw blood without poking him with needles. In addition, he had 7 stools yesterday! That's a lot of poopy for a little guy with nothing to eat. The resident doctor was not sure of the consistency. But I bet this is due to his antibiotics (day 5 of 7). Logan also had a low-grade temperature of 100.1 last night, but after removing some of his blankets, his temperature was back to normal. Phew! The ventilator rate is further decreased to 10 breaths/min, and the volume of the breath is decreased to 13ml instead of 15. Oxygen concentration is also down to 30% instead of 40%. The blood gas showed he was hyperventilating a little and the volume of his breaths was a little high, at the 70s instead of between 35-50ml. Let's see how he does with the new setting. These changes are all good news. Logan is showing us that he's fighting and has not given up yet! Director said he will talk to Neurologist today about the MRI. If he's getting it, it might be towards the end of the week.
I've noticed that they have taken his Hugs tag off. The Hugs tag is usually attached to all kids, I think under the age of 12, so that they can't run off, or no one could steal any babies. If the tag is being tampered with, or not taken off while leaving the PICU, the alarm will sound off . I guess they figured he's on the ventilator, no one can really sneak him out. It's more comfy with one less tag attached to him.
I've also noticed they attached a tag to his bed with a medication name. For some reason, I keep on forgetting to ask what that is until today. They tried to give him Theophylline before to open up this bronchial tubes to help with breathing. Apparently, he's allergic to it. His heart rate went up to 200, and he had rashes all over his body. After they stopped it, he's back to normal. I wonder why they didn't tell me that. It's pretty important to know that he's allergic to a medication, even though it's not something that's common, but still. They must have given that to him the days Aidan or I was sick and I was unable to come. Now whenever someone asks if he's allergic to any medication, I will have to say yes.
Logan is a lot more awake today. He's like when he was 3-5 days ago. I didn't know excess water retention can make him sleepy (thanks cousin Peggy). I guess it's showing that he is losing that excess water. Yay!
11:20 p.m. - Neurologist just came in. I gave him a brief update on how Logan is doing. He agreed that it might be a good idea to do another MRI. I also asked him to explain to me a little more about Logan's infarct. He drew on the white board and explained it to me. The black parts on both sides of the brain are where the stroke is. I didn't know it was on both sides and more than one part. They are located in the Midbrain. When he first met Logan, he has asked me about the movement of his arms. At first, he questioned if it's the side effect of Reglan. Now we know it's because of the stroke. He said because of the location, they aren't really close to the 3 big blood vessels, but off to the side where the small blood vessels are. That's why they suspected it's Mitochondrial disease, esp. when it happened on both sides of the brain. He said the gray matter along the side of the brain looks fine, and the little of the brain stem that they can see. I asked if we can do an MRI to see the brain stem. He said it's difficult because of it's location and the size. I also asked about the hearing test/loss. I showed him the hearing test result that I received from the Audiologist. He showed me the nerve in the brain stem. He said it might be possible to surgically do something about it, but the nerve is so small and it's so close to other nerves that control the face. The benefit of doing something might not be worth it. I told him I think Logan could hear some noise, but probably not enough. I then asked about his eye sight. I was told he reacted to light but not sure if he can actually see. He said there's the actual seeing of something, and the interpretation of what you see. He has seen Logan before he was sedated. He said it's hard to say because Logan has been sick and in the hospital for so long. He might not have the chance to develop normally.
12:50 p.m. - Finally got the name of the enzyme that showed low-normal in Logan's bloodwork last time. It's Carnitine. He's getting supplement for that, on top of his antibiotics, co-enzyme q10 and Ativan.
2:25 p.m. -Director just came in and told me we might have some results back from the lab. He's trying to get more information and to set-up a meeting with the neurologist and geneticist for today. It seems like there is an abnomality in the mitochondria and the lab recommends some more tests to get a definitive result. Director wants to consult with neurologist and geneticist about this. If possible, we might have a meeting to talk about it later today. I am not sure how I feel about this. Bad thing, it is the deadly Mitochondrial disease. Good thing, we might have a diagnosis. Depending on the conversation and how I feel, I will blog about it tomorrow.
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