This is a very poignant article from the NY Times that was brought to my attention by my friend, Janet. Well worth a read.
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html
The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Thursday, October 27, 2011
Tuesday, October 25, 2011
13 weeks
Sunday, October 16, 2011
Fuzzhead
Seamus has a lot of hair. After his bath it gets curly when I dry it with a towel. It's the funniest thing. But it will dry straight. Here's a picture to give you a laugh.
He's doing well. At 10 weeks we went to the doctor for his well visit. He's 23 3/4 inches long (70th %) and 12lbs 4 oz (40th%). The weight doesn't show much increase from two weeks prior, but the weights were taken on two different scales. I am not at all concerned. Oh, and his head is 80th%. Maybe they measured that hair.
Also, we started sleep training him last night. It went pretty well. I put him down awake and let him cry for 3 minutes. I went in and comforted him without picking him up, left, and then let him cry for 5 minutes. I comforted him, and let him cry for 7. That was it. He fell asleep. He woke up again at 9pm and we started again. He also woke up at 11:30pm, which is unusual for him. I nursed him and put him down asleep. He woke again at 4:20am and I nursed him. At 5:30am he was up and crying, so I set the timer for 3 minutes. He fell asleep during the 5 minute span. Tonight, we did the 3 and 5 minutes. He fell asleep after 2 of the 7 minute span. We'll see how the rest of the night goes.
*update* Seamus slept from 8:20 pm until 2:25am. I nursed him and put him down. He slept until 6:30am. It was a great night. Oh, and we ditched the swaddle and are using a sleep sack.
He's doing well. At 10 weeks we went to the doctor for his well visit. He's 23 3/4 inches long (70th %) and 12lbs 4 oz (40th%). The weight doesn't show much increase from two weeks prior, but the weights were taken on two different scales. I am not at all concerned. Oh, and his head is 80th%. Maybe they measured that hair.
Also, we started sleep training him last night. It went pretty well. I put him down awake and let him cry for 3 minutes. I went in and comforted him without picking him up, left, and then let him cry for 5 minutes. I comforted him, and let him cry for 7. That was it. He fell asleep. He woke up again at 9pm and we started again. He also woke up at 11:30pm, which is unusual for him. I nursed him and put him down asleep. He woke again at 4:20am and I nursed him. At 5:30am he was up and crying, so I set the timer for 3 minutes. He fell asleep during the 5 minute span. Tonight, we did the 3 and 5 minutes. He fell asleep after 2 of the 7 minute span. We'll see how the rest of the night goes.
*update* Seamus slept from 8:20 pm until 2:25am. I nursed him and put him down. He slept until 6:30am. It was a great night. Oh, and we ditched the swaddle and are using a sleep sack.
Neuro appt
Last week, Eve had her semi annual neurology appointment. After some debate,we ended up taking Seamus to daycare (rather than bring him on the long car ride) which turned out to be a good thing. Then Jim, Eve, and I headed to Springfield for the neurology appt. Eve started crying in Pittsfield. We pulled over and checked her out. We couldn't find anything wrong. So we carried on figuring she'd settle down in a few minutes. She cried for the next 1.5 hours. Nonstop. Until we got to the doctors office. We think she was scared, but have no idea why she wouldn't calm down. Most of the trip is highway driving, and we kept thinking, "Surely she'll stop any minute. Surely she can't cry the whole way there." She also cried a lot at the doctor's office and finally relaxed when she realized we were just talking with him and there was no procedure. The drive was an awful, incredibly stressful experience. I felt so helpless. I just cannot imagine this being our new reality for car trips. Most of Eve's specialists are 1.5 - 3 hours away.
I asked the neuro if we could see him once a year instead of two times (yes). I mentioned the possible seizures and he didn't seem concerned. The last episode was nearly two years ago, so he didn't feel this warranted anything other than monitoring. He also upped her baclofen, adding two doses of a half pill (morning and afternoon). Hopefully this will relax her legs and make diaper changes easier, but we need to call if there are side effects (most likely sedation). Finally, he recommended an OTC medicine for motion sickness and gave us the dosage. He said that mito patients often have migraines, and that motion sickness goes hand in hand with migraines. I thought that was interesting. The neuro noted her hands being more clenched and that she has trouble holding her head up. We are to call if anything changes.
The trip home went pretty well. Eve watched a DVD and Jim slept. I enjoyed the fall foliage. Eve has been doing great in the days since the appointment. We haven't noticed any changes yet with the increased dosage of baclofen. She is still enjoying school and loves to laugh at her brother.
I asked the neuro if we could see him once a year instead of two times (yes). I mentioned the possible seizures and he didn't seem concerned. The last episode was nearly two years ago, so he didn't feel this warranted anything other than monitoring. He also upped her baclofen, adding two doses of a half pill (morning and afternoon). Hopefully this will relax her legs and make diaper changes easier, but we need to call if there are side effects (most likely sedation). Finally, he recommended an OTC medicine for motion sickness and gave us the dosage. He said that mito patients often have migraines, and that motion sickness goes hand in hand with migraines. I thought that was interesting. The neuro noted her hands being more clenched and that she has trouble holding her head up. We are to call if anything changes.
The trip home went pretty well. Eve watched a DVD and Jim slept. I enjoyed the fall foliage. Eve has been doing great in the days since the appointment. We haven't noticed any changes yet with the increased dosage of baclofen. She is still enjoying school and loves to laugh at her brother.
Saturday, October 1, 2011
keeping track
Seamus weighed 12 lbs 3 oz on the day he turned 9 weeks old. I can't believe how big he's getting! He's quite smiley when he's in the mood. Here are some pictures I took of him:
My mom asked me if I was going to keep a baby book for Seamus. I've decided not to. The blog is my digital baby book. I post pictures and write about development. I stopped writing in Eve's baby book when she started missing many milestones because it was just too difficult for me. Who wants to fill in "age baby first rolled over" when she's 15 months and still hasn't done it? A friend once told me you can have a company print your blog into a book. At this rate, it's going to be one hefty book! But, it's a record of both children and I think I'm just moving along with the times.
My mom asked me if I was going to keep a baby book for Seamus. I've decided not to. The blog is my digital baby book. I post pictures and write about development. I stopped writing in Eve's baby book when she started missing many milestones because it was just too difficult for me. Who wants to fill in "age baby first rolled over" when she's 15 months and still hasn't done it? A friend once told me you can have a company print your blog into a book. At this rate, it's going to be one hefty book! But, it's a record of both children and I think I'm just moving along with the times.
Three little ones chillin' together |
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