My Book

Emmy is sleeping...all wrapped up like a papoose here on the bed. I didn't swaddle the first two...oh how I missed out on a wonderful calming tool. She has been going to bed at 10:00pm and waking up at 3:00am to eat, then again at around 6am. This is a good schedule. I hope she keeps it up. Her fussy period is for a couple of hours at night before bedtime and is contained by DH and I taking turns with her and me nursing her quite often. With both of us working to keep her comfortable, the crying is minimal and that is kind of amazing. She cries in the car. Owen calls it the "waaa song." It is uncomfortable but I am not too bothered by her crying in the car since there is nothing I can do about it. If I have learned anything in the past couple of years it is to tune out things I have no control over. It makes life easier.

I have been writing a book. I haven't added to it since before we moved to this house. I put some of the problems I was going through, in the book, as the character's problems. When I read it last night for the first time in months, I was kind of shocked at how bad my anxiety was and how DH and I were going through a bad patch. We do much better together now on a team, parenting a little one. We are so proud of the little beautiful person we created together that how can we be angry with each other?

Before I got pregnant I was starting to get antsy and wanted to connect with him somehow, either by writing music together again or him helping me with the business again. But he was instead spending more time with his other band and pulling away from helping me with the business. So I was feeling kind of alienated. But we were also living with my parents at that time and that is pretty bad for our relationship. That was when they had just moved here and were living with us for a few months.

I guess I kind of worry that when Emmy gets older that DH and I will drift apart again. But I also suppose that every couple has bad patches and I know that we will fight for our relationship. I was also grieving very badly at that point, an DH seemed to be acting like I was supposed to be getting better, not tanking. When I found out I was pregnant, DH was suddenly way nicer to me. I suppose we suddenly had that connection that was missing and that I was craving. Then when we moved to this house it was like a weight lifted and we were both happy again.

So the book is over 40 pages long. It is pretty good actually. It needs a lot of work too but it was interesting which is a good thing I think :) I just need to figure out how to spin it into a plot a bit more and make something happen and then be resolved. I'll have to think about that.


We had a good night tonight. The kids went to bed OK and last night they went to bed well also. I have been bribing them...saying that if they go to bed well they can have chocolate the next day. Today they got chocolate and so at bed time they wanted to be good again. I was also in a good mood which I know sets the whole positive tone of the routine and makes things much easier.

I ordered some more b12 today so I will give AJ a shot tomorrow.


We are filming a wedding tomorrow. I have to be away from Emmy for hours while my mom watches her and the other two. The wedding is near my house so I will be able to nip home to feed her while DH films. But I also have some bottles saved up and I will bring the pump with me to the wedding. Goodness knows where I will go to pump in a church. I just hate being away from Emmy for any amount of time. She is 6 weeks old today. I don't know how people can bare going back to work at 6 weeks and putting their babies in day care. I know many people just don't have the choice and I feel beyond lucky that I do.

me.

Kinda weird

Last week when I was having a morning sleep-in, I had a vivid dream that a government company was laying huge pipes in our streets and came in our yard and even had to come in our house to do it. When I woke up I heard big trucks drive up outside the front of my house. I looked out of my bedroom window and was stunned to see 2 enormous trucks with a huge pipe on the back of one. I realized later when I went outside that it was not a pipe, but a telephone pole...and the work they did was 2 houses down, putting up a new telephone pole. So it wasn't exactly like my dream. But then today we got a notice from the electric/water company, a leaflet left on the gate to the front picket fence, that they would be working on our street tomorrow and possibly have to come in our yard. I just think that is very odd. They said the electric would be out all afternoon.

We went and got pizza for dinner tonight...we let AJ cheat and I cheated too...hopefully Emmy won't have green poop. The result for AJ was a huge melt down at bed time. I suppose that could have happened anyway, but I found out today that the pizza crust is made of millet and flax, which seems to make her crazy...never mind all that cheese too. I think that we are done cheating. I always say that and always end up cheating. Her behavior was horrible tonight:

1. She dumped her sippy cup of water on rug because she was angry it wasn't rice milk (we said only water since she had already brushed her teeth).

2. When I put her in time out she was trying to hit me and succeeded a few times.

3. I sat on the floor with her in time-out to restrain her and then when she said she would stop hitting we just sat there. I was so angry but when I am being challenged like that I pretend I am on TV, on super nanny and I have to act perfect for the cameras. This helps me do the right thing when I want to give her a good hard smack on the butt, but know I shouldn't. Super Nanny wouldn't like that, and neither would I after the fact.

4. I got her some paper towels and she wiped up the water quite happily, almost proud of the mess she had made. It was both frustrating and a relief that she enjoyed it.

5. Back in bed she wanted me to lie down with her and I said I didn't want to lie down with her because she hit me and I don't want to lie down with someone who hits me.

6. She said, "Oh I'm sorry". She learned about "sorry" in social skills a couple of weeks ago.

7. I told her that words don't fix it. Only actions...and being good and lying down for 15 minutes quietly with her head on her pillow will show me she is truly sorry and that will fix it.

8. She did this and I ended up going in 15 minutes later and lying down with her and talking to her for a little while. I asked her what we could do to make her go to bed at night without hitting or having bad behavior. She said, "I don't know."
I don't know either.

I feel like such a failure when this stuff happens. I know it will help to have a clean house so I will try to work on that. Right now is it after midnight and I am waiting for a DVD to burn. It will take hours. I have most of them burned and printed up and I will send them out to the bride on Friday. I had to turn down work today from a company who wanted me to make them an instructional video. I told them I couldn't help until August and they didn't want to wait that long of course. I am just so behind on my weddings, I couldn't make the brides wait even longer while I took up a new project. But I hate turning down work too. Its not like we have money or anything.

Tomorrow is a new day.

OK, I'm off to clean.
me.

Good Morning

I have got the sweetest, prettiest, most laid back baby and I attribute it to a few things. The first is because I am exclusively breast feeding and although it hurt at first and although the thrush thing has been a struggle, it is worth it to not have to listen to her cry after a bottle and not know what to do next, to always have food with me where ever we go and to have that closeness with her. I am not worried about her food because she is growing and pudging up really well.


This morning we slept in until 1 in the afternoon (right now). Jeff dropped the kids off at school this morning and is picking up Owen this afternoon. I was up this morning actually, getting the kids ready for school. But the rest of the morning I slept cuddling with Emmy and feeding her every few hours. She didn't even spit up because I held her upright on my chest for 20 minutes after each feeding. Then she was fine and didn't even have any cramping. This is a very different experience for me!! And this morning she gave me the best smile. I thought I would melt. Yesterday, a mom at AJ's therapy waiting room saw me nursing Emmy in the car and came over to say hi. She told me that when babies smile at this point, it is because the angel who looked after them in the belly are coming to visit them and check on them now, and it makes them smile.

I worry that our mornings are too decadent. I shouldn't be allowed to spend this much amazing quality time with my baby. But I am just going to soak it in while it lasts and enjoy every single tiny second of it. This is what life is all about right here and for some reason, I don't have to rush by it right now.

Emmy is allergic to dairy too

So I don't know if I mentioned this before but I am not eating anything with casein in it because I wanted to cut down the chances of Emmy getting bad colic while nursing. It seems to be working. She is a fairly easy baby unlike my previous 2 difficult little ones. She still has reflux and chokes sometimes, but I so know what to do, that it all feels pretty normal. She doesn't freak out crying for hours every night either. What I do to help her with reflux and stomach cramps seems to calm her and we are both happy.

I cheated:
After my mamagram the other day, Jeff and I got lunch at a local restaurant that I like because it it posh, well priced and all organic and localy grown food. I totally cheated and ate lots of dairy, including cheese and a creamy artichoke dip that was so yummy. Right after that meal, Emmy nursed and her next poop was flourescent green. Today it was finally back yellow again and I think that is so weird that it took a whole week to get back to normal. I know that not getting enough hind milk will turn poop green. But Emmy gets tons of hind milk. In fact, if there were milk behind hind milk she would get that too with how much she treats my boob as pacifiers. We are also dealing with yeast and I have to put All Purpose Nipple Cream on like, every day. That probably isn't good for her stomach either.

I told DH tonight that I am so attached to Emmy that it is like still being pregnant, except louder since she cries at her fussy time...which is only for like an hour at night after I get tired of cluster feeding her and let her cry for a bit while I hold her or while DH holds her.

OK, I'm tired
Goodnight,
me.

I have been looking for a Hello Kitty lunch box for AJ since she has been asking me for one and it is quite unusual for her to ask for specific things...so when she does, I enjoy indulging and getting it for her. Something as small as a Hello Kitty lunch box is quite easy, but I hear there are lead in lunch boxes sometimes so I checked it out on http://www.goodguide.com/products/211185-hello-kitty-lunch-box

It said that it has lead and PVC in it and rated it one of the most toxic things you can buy.

Emmy calls...
me.

Not Cancer

I do not have breast cancer. That is one less strike against me in the possibilities of death before my children are raised.

OK, enough with the dramatics and I have to say that the best part of the mamagram this morning was that the mamographer controls the squoosher with a pedal, it doesn't just come down on its own and gauge the pressure automatically like an automatic bloodpressure cup does. I was so scared that the machine was just going to come down on its own and clamp my breast until it was so horribly squeezed. The mamographer was in control of the squoosher with a pedal and yes, my boob was flattened like a pancake, but I had a human in control of it so I could ask her to change it if it ended up being excurtiating...which is wasn't. In fact after nursing Emmy and then pumping and pumping and pumping, it really wasn't half as bad as I thought it was going to be.

The Doctor came into the room finally (no men were allowed past the waiting room...weird) so it was just me. The Dr. put my boob pics up and showed me that they looked fine. I just saw a bunch of white swirly lines in what looked like an outline of my breasts and didn't really know what she was talking about, but glad she said they looked fine. She then did an ultrasound on the lump in question and said that since it was white and not black it showed that it was just breast tissue and not "trouble."
Then she said, "What do you think it is?"

That surprised me. She seemed to really want to know. I said that I guessed it was breast tissue like she said, because it wasn't a plugged duct because it didn't change when I nursed or took a hot shower and it wasn't tender or anything. She said that she didn't know why they were called plugged ducts, because there wasn't milk stuck in there or anything. That confused me, because....yeah, there is milk stuck in there when there is a plugged duct and I started to wonder if she knew what she was talking about. She must have sensed my fear because then she said that I looked totally fine to her and she spotted trouble very well and she had seen over 65,000 patients so she wasn't a newby.

I said OK and she said that I can go to a surgeon too if I want. I sat there, a bit confused. Why did I need to go to a surgeon if I was fine? Then she said, "Why don't we have you come back in 6 weeks and have another look and see if it has changed."
I said, "Do you think it will go away?"
She said, "Well, yes!."

So........we shall see.

In the mean time I feel pretty good that I don't have "trouble" in there. I can go on establishing the routine with Emmy in the house and trying to get things kind of back to normal. No more elephant in the room.

OK, time to change Emmy's diaper.
me.

Fever gets rid of autism...sweet validation and exciting article

I am so excited about this article and so glad I didn't delete it from my inbox before looking at it. I am going to paste in here for you. I have been saying for years AJ's autism just goes away when she has a fever. During her flu bout a couple of months ago we had a week of conversations, no sensory issues at all (I could have her in bed with me and she didn't drive me nuts with wiggling around constantly) and her behavior was wonderful with no tantrums. She was my typical little girl that week of the flu. Now, FINALLY here is an article about autism and fever, validating what I have been shouting from the roof tops:

New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible

ScienceDaily (Apr. 2, 2009) — http://www.sciencedaily.com/releases/2009/04/090401145312.htm

Scientists at Albert Einstein College of Medicine of Yeshiva University have proposed a sweeping new theory of autism that suggests that the brains of people with autism are structurally normal but dysregulated, meaning symptoms of the disorder might be reversible.

The central tenet of the theory, published in the March issue of Brain Research Reviews, is that autism is a developmental disorder caused by impaired regulation of the locus coeruleus, a bundle of neurons in the brain stem that processes sensory signals from all areas of the body.

The new theory stems from decades of anecdotal observations that some autistic children seem to improve when they have a fever, only to regress when the fever ebbs. A 2007 study in the journal Pediatrics took a more rigorous look at fever and autism, observing autistic children during and after fever episodes and comparing their behavior with autistic children who didn't have fevers. This study documented that autistic children experience behavior changes during fever.

"On a positive note, we are talking about a brain region that is not irrevocably altered. It gives us hope that, with novel therapies, we will eventually be able to help people with autism," says theory co-author Mark F. Mehler, M.D., chairman of neurology and director of the Institute for Brain Disorders and Neural Regeneration at Einstein.

Autism is a complex developmental disability that affects a person's ability to communicate and interact with others. It usually appears during the first three years of life. Autism is called a "spectrum disorder" since it affects individuals differently and to varying degrees. It is estimated that one in every 150 American children has some degree of autism.

Einstein researchers contend that scientific evidence directly points to the locus coeruleus–noradrenergic (LC-NA) system as being involved in autism. "The LC-NA system is the only brain system involved both in producing fever and controlling behavior," says co-author Dominick P. Purpura, M.D., dean emeritus and distinguished professor of neuroscience at Einstein.

The locus coeruleus has widespread connections to brain regions that process sensory information. It secretes most of the brain's noradrenaline, a neurotransmitter that plays a key role in arousal mechanisms, such as the "fight or flight" response. It is also involved in a variety of complex behaviors, such as attentional focusing (the ability to concentrate attention on environmental cues relevant to the task in hand, or to switch attention from one task to another). Poor attentional focusing is a defining characteristic of autism.

"What is unique about the locus coeruleus is that it activates almost all higher-order brain centers that are involved in complex cognitive tasks," says Dr. Mehler.

Drs. Purpura and Mehler hypothesize that in autism, the LC-NA system is dysregulated by the interplay of environment, genetic, and epigenetic factors (chemical substances both within as well as outside the genome that regulate the expression of genes). They believe that stress plays a central role in dysregulation of the LC-NA system, especially in the latter stages of prenatal development when the fetal brain is particularly vulnerable.

As evidence, the researchers point to a 2008 study, published in the Journal of Autism and Developmental Disorders, that found a higher incidence of autism among children whose mothers had been exposed to hurricanes and tropical storms during pregnancy. Maternal exposure to severe storms at mid-gestation resulted in the highest prevalence of autism.

Drs. Purpura and Mehler believe that, in autistic children, fever stimulates the LC-NA system, temporarily restoring its normal regulatory function. "This could not happen if autism was caused by a lesion or some structural abnormality of the brain," says Dr. Purpura.

"This gives us hope that we will eventually be able to do something for people with autism," he adds.

The researchers do not advocate fever therapy (fever induced by artificial means), which would be an overly broad, and perhaps even dangerous, remedy. Instead, they say, the future of autism treatment probably lies in drugs that selectively target certain types of noradrenergic brain receptors or, more likely, in epigenetic therapies targeting genes of the LC-NA system.

"If the locus coeruleus is impaired in autism, it is probably because tens or hundreds, maybe even thousands, of genes are dysregulated in subtle and complex ways," says Dr. Mehler. "The only way you can reverse this process is with epigenetic therapies, which, we are beginning to learn, have the ability to coordinate very large integrated gene networks."

"The message here is one of hope but also one of caution," Dr. Mehler adds. "You can't take a complex neuropsychiatric disease that has escaped our understanding for 50 years and in one fell swoop have a therapy that is going to reverse it — that's folly. On the other hand, we now have clues to the neurobiology, the genetics, and the epigenetics of autism. To move forward, we need to invest more money in basic science to look at the genome and the epigenome in a more focused way."

Journal reference:

1. Mehler et al. Autism, fever, epigenetics and the locus coeruleus. Brain Research Reviews, 2009; 59 (2): 388 DOI: 10.1016/j.brainresrev.2008.11.001

Adapted from materials provided by Albert Einstein College of Medicine.

I called the radiologist this morning and they got me in for this Friday morning, just two days from now... and said that I will have a mamagram  that morning too. I am feeling pretty cheerful that I got an appt so quickly, although I am not looking forwards to the testing and stuff. I really hope that from the tests that they will be able to tell that there is nothing wrong and it will just go away or just not be a big deal or something. 

me.

not just a plugged milk duct

I went to see my midwife, Lilly, this morning. When I called yesterday and told her about the lump in my breast she said I could come in today if I was worried about it. So I did and when she checked me out she said that I was right and this was not a plugged milk duct but a mass and that I needed to go to a specialist. She referred me to a radiologist who also does ultrasounds and such. After the exam she walked me up to the front desk. She is a big woman and her voice is rather booming. She said loudly to the receptionist and pretty much everyone in the waiting room, "Call to get her an appt. She has a mass in the left breast, she is breastfeeding, see that the Dr. gets her in as soon as she can." 

When I walked through the waiting room to leave, with Emmy in her car seat, I felt like everyone was looking at me and I felt like I was in a bad dream.

So now I wait for the phone call for the appt. But I'm not going to wait. I will call the radiologist office tomorrow and set up the appt since I don't have too much faith in front desk operations and procedures. I have a few very good reasons why I can't die of breast cancer and my biggest one is my child with autism. DH said something kind of weird. I know he is terrified and he said, you don't have anything to worry about, I'm the one who has something to worry about...implying that he doesn't want to be left a single father of three kids. It was kind of a joke but a little alarming anyway. 

I'm not going to mention anything to my  mom or younger sister until I get the all clear or otherwise, because they don't need to do the waiting game with me. I wish I could talk to my older sister about this. If I prayed... I would pray about this.

me.

I don't think this lump is a plugged duct. I have had many plugged ducts before and they were nothing like this. I am going to go and see my midwife tomorrow and she said she will have a look at it. She said if it isn't a plugged duct we will do an ultrasound and she will set me up with a consult with a surgeon. I just talked to another friend who just went through the same thing...I talked to her about it like, last week. Now it seems to be happening to me.  She was fine after her biopsy. I really hope this is nothing and I really hope I don't have to even get a biopsy. I am terrified of surgery. I am more terrified of dying of breast cancer. This sucks. I haven't told my mom or younger sister and I am going to keep it that way.

me.

a bit scary

So last night I found a lump in my left breast. I had DH check it out and he said,  yeah, you need to go to the dr about that. But this morning I mentioned it to my friend who came over, and who's mom has struggled with breast cancer said that she didn't think I needed to worry because it was probably just a plugged duct from nursing. I said that it doesn't feel like one because it isn't sore and it doesn't drain at all and it is at the top, not near the areola. She said that she got all sorts of weird lumps and bumps while she was nursing and that we have milk ducts everywhere. So I will still go to the dr about it tomorrow but I'm not going to worry about it in the meantime.

me.

So what kind of an autism mom am I? Recently I have been deleting articles in my in-box and avoiding the autism month thing. I have been just completely avoiding autism and kind of pretending like it isn't in our house anymore. I am playing house like I have 3 typical children but I don't and I am wondering if/when I need to change my tune. 

One email from the Generation Rescue site was asking for stories of recovered children. As I looked at it I realized that I do not have a recovered child. I have a little girl who is brilliant and who is hurdling the barriers that autism shoves in front of her daily, hourly...by the minute. But she does have autism and it wasn't that long ago that we were dealing with endless reverse pronouns and limited speech...no real conversations. In fact that was at the beginning of this school year. Now she will carry on a conversation and ask questions. She will play well with her brother, even make eye contact and she will approach children on the playground when we go to the park in our neighborhood, and she will end up playing with them. She is not typical. Her conversations are often quite odd, and often repetative, "Mommy how old are you?" I get that multiple times a day even though she knows how old I am but that transitions into endless questions about how old I will be when she is 27...and how old Owen will be when she is 45 and how old Emmy will be when she is 76. This goes on all day and I go through it all with her doing the math in my head like a rusty swing. When she talks to other children she seldom looks at them and her speech is very musical. But she has all sorts of phrases and expressions memorized and she uses them appropriately in a way that makes DH and me smile. She even says, "Oh OK!!" in a huff when we ask her to wash her hands for dinner. This is so great for me because it is so typical, but somehow it is a little more rehearsed sounding than a typical child. 

So even though she plays the part of a typical child, she is not recovered, she still has autism and so maybe I shouldn't be playing the part of a mom with a recovered child. I should still be reading the articles. But I think I avoid them because I don't want to delve into more biomed. I wonder if I do more that perhaps I could help her even more. But it is such a huge commitment to do this diet so strictly and it is such a huge expense that I don't want to take it further. I am afraid to drive to where the DAN! doctors are ( OK so not recovered from anxiety disorder completely either I guess) and I don't want to shell out hundreds and hundreds of dollars for the  appointments and the testing. I have so little time as it is, and researching and implementing biomed is a huge investment of time. So I play the part as if I am done with autism, but it is not done with us. Thank goodness many of my friends email me stuff because I do actually read those.

We still do the B12 shots and they still give us amazing results. I am very interested in the hyperbaric oxygen treatments but she will be terrified to sit in one of those tanks. I don't want to do that to her, but it might be amazing for her. I could take the articles with me to her pediatrician and ask her to prescribe it as a treatment perhaps. Or maybe I could ask her psychiatrist who diagnosed her (saw her once) to prescribe it as a treatment so our insurance would pay. Maybe it still wouldn't though. 

I should be sleeping since Emmy is sleeping. I have a bit of mastitas sp?? or thrush or something, another pain in my butt..or boobs I should say. So nursing hurts. I have some "all purpose nipple cream" to put on but I need to bug Emmy's dr for some stuff to put in her mouth because we are passing the yeast back and forth. But I hope she will just call it in for us because I hate taking Emmy into the germiest place ever, the pediatrician's office. Fun stuff eh?

Bye for now,

me.

I am so absurdly behind in my work that I am going to have angry brides beating down my door pretty soon. 

Today I baked cookies. I haven't made anything from scratch in years, but when I looked at this recipe that a dear friend emailed to me, I saw with surprise that it was super duper easy. I had all the ingredients and both me and AJ could eat it because all it was, was almond butter, sugar, an egg and baking soda. I threw it all in a bowl and stirred it up then made little balls and stuck them on a baking sheet. They were done in only 10 minutes and I suddenly had delicious GFCFSF cookies that were actually good for you because of the almond butter.

OK, I'm off to fee Emmy, she's fussing.

me.

update

My older sister's husband came today and brought belated birthday presents for DH, AJ and Owen. He sat on the couch and looked at Emmy and said that her fingers were so small. I knew he was thinking about his son and it made us both cry. His mom was with him but she stayed in the car and didn't come inside to see me. I was so relieved. I haven't seen her since the funeral and I know that I would remind her so much of my sister it would have been too much for her, especially with a newborn in my arms. It would have been too much for me too. I would have just cried the whole time I think. 

It was nice to see him anyway but so so hard. It doesn't seem to get any easier. He is just struggling  without her. He said he never knew what nervous breakdowns were before but now he is dealing with them, although they are starting to get better. We talked about how we try and stay in a  world where she is still there in a way. We can't think about the tragedy. We live kind of how we lived when she was in our lives, only well, she isn't, but we can't face  that or something. We don't let ourselves think about that too much. I think of  her all the time but I can't face that she isn't accessible. I can't imagine that so I just sort of block that part out. I picked up my cell phone a few days ago and spoke to her on it. I know that is weird and I didn't expect her to talk back and I didn't dial any numbers or anything. It is just how I used to talk to her every day, sometimes more than once a day so it seemed like the best way to somehow reach her with what I wanted to say. I don't even remember what I said...something about how hard it is without her but how she is still with me every day. I gave Emmy her middle name to honor her.

Well, Emmy wants to nurse again. I have her in a sling here. I can't believe she sat here without fussing at me for 15 minutes so I could write this post.

Bye for now (things are still going well)

me.