Saturday, September 15, 2012

More Games...

I wrote about more games and activities for toddlers at NEK Moms today. Check it out and tell me what you favorites are!

Monday, September 10, 2012

DIY Toddler Games & Activities

I spent a lot of time perusing the internet the last week looking for fun things to do with Sweet Pea. Now that she is sitting up by herself I feel like there is so much more we can do! I pinned a ton of ideas on Pinterest so you can find a lot more there, but here are some of the games and activities I made yesterday and today:

Sensory floor
For the sensory floor I just taped a bunch of different stuff to the floor for Sweet Pea to touch. Seen here are tinfoil, wax paper, and a Ziplock bag with about 3 tablespoons of water (which I later added blue food coloring to just to make it look cool). She loved it, especially the bag of water.

Shakers
I have a ton of leftover breastmilk containers. I put a few of them to use as shakers by filling them with rice, beans, marbles, etc. Make sure you hot glue the lids shut!

Pom-pom fun
This may be Sweet Pea's favorite game. I bought a pack of pom-poms at the dollar store and put a few in another empty breastmilk bottle. She had fun shaking them out of the bottle and then putting them back in. To change it up a bit, I gave Sweet Pea an ice cube tray and set her to work "sorting" pom-poms. Fun!

I also bought a few used books on Amazon for $.01. Yes, you read that right: one cent (+$3.99 shipping, but still...). One of them arrived last week and I have really enjoyed reading it. "Baby Days: Activities, Ideas, and Games for Enjoying Daily Life with a Child Under Three" is full of activities divided up by time of day and age of baby. It's funny that I need a book to remind me how fun it is for Sweet Pea to play with a box of tissues, but I do! I get so caught up in the day-to-day routine of taking care of her and myself and I forget all the other things we could be doing. Anyway, I am loving the book. When the others arrive I'll let you know if they are worthwhile.

In the meantime, check out my Activities for Toddlers Pinterest page. There are so many free ideas on the internet from lots creative moms that it's actually a bit overwhelming!

Monday, August 20, 2012

Bayt Boutique

Do you love finding cute, handmade decor for your home? Do you also like to support great causes? My sorority sister Jenny and her husband have opened up an etsy shop full of one-of-a-kind treasures for your home, with all proceeds going towards the adoption of their little one in Ethiopia! Check out Bayt Boutique (bayt means "home" in Amharic - the official language of Ethiopia) and let me know what your favorite item is! I love, love, love this children's table!

Only $129.99 from Bayt Boutique

Tuesday, July 31, 2012

Preemie No More

Last night I was going through some of Sweet Pea's baby stuff and found her very first outfit. It was a preemie sized onesie that my sister bought her and that she pretty mush swam in. Today I decided to try it on for fun. I could barely get her arms in it and didn't even bother attempting her legs! I can't believe she will be one this Sunday!


Friday, July 27, 2012

Olympic Cupcakes

I was inspired by a college friend who made a similar dessert. Excited to watch the opening ceremonies tonight!
I wasn't picky about the colors  of the M&Ms matching...

Tuesday, July 3, 2012

Where have I been?

I can't believe my last post was from June 19! What have I been doing?

I dropped the ball on the photo-a-day thing and haven't been blogging because basically, my husband is out of school for the summer and we have been having a lot of fun outside.

I've also been introduced to Listen Up Vermont where I can check out ebooks on my Nook - I am addicted! In the last two weeks I've read Battle Hymn of a Tiger Mom, The Peach Keeper, and now Emily, Alone. Maine is on deck too! I forgot how much pleasure I get from reading a good book.

I also spent hours reading magazines that have been piling up. I feel terrible if I recycle one without reading it, so this weekend while the Hubs was at deer camp for a work day I read them all. (If I could only convince myself not to also hang on to many of my magazines my house would be a cleaner more organized space! Damn you Atlantic, Vermont Life, Cook's Illustrated and Yankee!

Our garden looks spectacular and will, I hope, stay in good shape while we are in Florida. The deer have let it mostly alone this summer but we've been invaded with flea beetles, then cucumber beetles and potato beetles. We've already been able to eat the lettuce, and some basil and cilantro.

I've been making mental packing lists for weeks now for Florida and need to actually write it down. Flying with Sweet Pea's meds and bottles actually seems pretty easy. I will not be using cloth diapers that week to save my sanity and space in our luggage!

Speaking of Sweet Pea, her first birthday is a little over a month away and I've been working on it too! I can't believe she will be one already! The anniversary of my pre-term labor and bedrest is July 7... that also seems soooo very long ago.

Happy early 4th of July! I hope you all spend some time reading the Declaration of Independence tomorrow!

Cheesy self-portrait during our walk/hike to the abandoned West Wheelock Cemetery

Tuesday, June 19, 2012

Disorders of the Corpus Callosum and the Validity of a SOD Diagnosis

A couple of days ago a virtual friend of mine (I call her son Sweet Pea's Australian twin, as we experienced an almost identical pregnancy, NICU stay and diagnosis) posted on Facebook that the ONH Research Lab at Children's Hospital LA was taking questions online and would try to answer as many as possible. Although we were headed out the door I took a few minutes to ask the one question that has bothered me since Sweet Pea's diagnosis with SOD:  
My 10 mo. old was born with SOD - no vision problems though and optic nerve looks perfect. How common is it to have SOD without the vision issues? Could she develop problems later? She also has DI, hypothyroid and has emergency cortisol... may need GH later as she is still only 12 pounds but blood sugar is fine. Is anyone researching just SOD?
I was so happy to get their response yesterday:
The defining feature of SOD is ONH (small optic nerves and vision impairment) plus other features. As a side note, we just use the term ONH as it encompasses all of these features. Have you had a second opinion by a pediatric neuro-ophthalmologist? If the optic nerves are normal, there can be no ONH and thus, no SOD. Children can have hormone deficiencys due to some other cause.
Of course, this brought up another question:
 Thanks for the response! We've had both a pedi neurologist and a pedi ophthalmologist care for her over the past 10 months from Boston Children's Hospital. They explained there were 3 areas (hormones, brain structures, or vision) involved in ONH/SOD and that you only had to have problems in two areas to be considered SOD. In my daughter's case she is missing hormones, has no septum pellucidum, thinning of the corpus callosum posteriorly, and a small pituitary - but normal optic nerves (checked three times now). We've thought of seeking a second opinion though - can you point us in the direction of someone in the New England/east coast area? THANK YOU for your response! It is great to have the opportunity to ask questions!
And their response:
There are 3 areas involved in ONHl; however, the definition they are using is incorrect. The defining feature is small optic nerves (ONH) and over the years, many physicians began using the term SOD when there is ONH (small optic nerve) plus hormone dysfunction and/or brain malformations. Without small optic nerves, neither the diagnosis ONH or SOD can be accurate. For a better explanation of this diagnosis, email our study coordinator Joyce Sutedja (jsutedja@chla.usc.edu) and ask for a copy of the JNO article titled "Reappraisal of the Optic Nerve Hypoplasia Syndrome". For recommended ophthalmologists, take a look at our searchable database on the ONH webportal: www.chla.org/onh
I requested the JNO article and received it within the hour. Basically, it states that "'Septo-optic dysplasia' and 'de Morsier syndrome' are historically inaccurate and clinically misleading terms that should be abandoned." It says that Caroline cannot have ONH/SOD without the hypoplastic optic nerve. Dr. Borchert's office recommended that we get a second opinion from a pediatric neuro-opthamologist to confirm that her optic nerves are normal. I've requested an appointment with the neuro-optha office at Children's and have emailed our neurologist with both the article and questions about Sweet Pea's diagnosis.

One of the common associations of ONH is something called corpus callosum hypoplasia. Last week, in a totally unrelated series of events, a high school friend posted a link (again on Facebook) to her friend's blog. When reading her friend's blog post I noticed on the sidebar a link to the National Organization for Disorders of the Corpus Callosum (something my friend's friend's daughter has - isn't it a small world?) and had briefly scanned the website and decided I should look at it later. Yesterday, when I read the association between ONH and what I am going to call CCH (corpus callosum hypoplasia) I decided to pull out Sweet Pea's medical discharge paperwork from Boston.

When I read the discharge paperwork on our way home from the hospital there was something mentioned about Sweet Pea having a "thinning of the corpus callosum" which was discovered when neurology did her MRI. This was new information to me and I didn't know what it meant. All that neuro said to me in our meeting re: Sweet Pea's diagnosis was that she was missing the septum pellucidum which was an indicator of SOD and that it meant nothing else (it's like the brain equivalent of your appendix). I assumed upon reading this new information in her discharge papers that this too must be something not very important... and I never thought of it again until last week. (Even at our last neuro appointment when the resident showed us Sweet Pea's MRI and pointed out the thinning of the CC, I didn't think to ask what that meant because of my prior assumption.)

Yesterday, after reading Dr. Borchert's article, I decided it was time to also read the NODCC website that I had found by accident. I was - and am - pretty shocked and upset by what I found for two reasons. First, the information itself took my breath away like a sucker punch. Second, I couldn't believe that this was never brought up by neurology at Boston as it seems to be even more important than Sweet Pea's endocrine issues! Along with the SOD diagnosis I emailed about, I wrote in detail to our neurologist for an explanation regarding this new information.

If Sweet Pea does have this "thinning of the corpus callosum" it is medically referred to as hypoplasia of the corpus callosum:

Hypoplasia refers to a thin corpus callosum. On a mid-line view of the brain, the structure may extend through the entire area front-to-back as would a typical corpus callosum, but it looks notably thinner. It is unclear in this case if the callosal nerve fibers are fully functional and just limited in number, or if they are both less plentiful and more dysfunctional.
What does this mean?
Likewise, in partial ACC and hypoplasia, once the infant’s brain is developed, no new callosal fibers will emerge. 
In that sense, disorders of the corpus callosum are conditions one must “learn to live with” rather than “hope to recover from.” Long-term challenges are associated with malformation of the corpus callosum, but this in no way suggests that individuals with DCC cannot lead productive and meaningful lives.

The 200 million fibers of the corpus callosum are the most important structures in the brain for sending messages from the right to left hemispheres. If they are not fully developed (or absent) then the brain can not "communicate movement or... think about complex information." They are formed between 12-16 weeks gestation and are fully functioning by 12 years old. Thus around the age of 12, children with CC issues begin to fall behind developmentally and behaviorally. You can find a list of common issues here. Can you see why I would be a little upset?!?!


It also made me think about the small delay's that Sweet Pea has faced so far. Our doctors and our Early Intervention therapist have blamed these delays on two things: 
1. She was a preemie (side note: I did find a study that shows preemies or more likely to have disorders of the corpus callosum when compared to full term babies)
2. She wasn't fed for so many days in the NICU and as a result did not grow appropriately making it physically impossible for Sweet Pea to do certain things on time.


Now I ask myself if these two reasons explain anything at all? Granted, Sweet Pea is pretty much on target for her adjusted age but it looks like we could be in for more significant delays as she gets older. Or maybe she will be perfectly fine? Who knows! In the meantime I will probably question everything and worry way too much. 


I have requested a hard copy of Sweet Pea's MRI and the neurologist's report and am anxiously awaiting a reply from her neurologist to see what she says about all of the above. It will be a real kick-in-the-ass if she confirms what I have learned. Then I'll be curious to know why this wasn't brought to our attention sooner (couldn't we been given a handout of some sort while in the NICU?). 


Thursday, June 7, 2012

June 7: Drink

Sweet Pea loves to drink the clean bath water!

This was yesterday's photo: Hat.

Monday, June 4, 2012

June 4: Close Up


Smoothie makings.
I didn't use this one but I like it. :)

Sunday, June 3, 2012

June 3: On Your Plate

In this case, what's in Sweet Pea's bowl... but close enough:
The Red One - From Ella's Kitchen
I bout these new baby-food pouches today from a company called Ella's Kitchen. I bought one of each kind that my store offered to try with Sweet Pea. She loved "The Red One" which is a fruit smoothie made with organic bananas, apples, strawberries and raspberries. No water - which is great! She loved it! It's the first fruit she's really liked! I can't wait to try the others...

SimplyFun 2-Day Clearance Sale

I've signed up as a SimplyFun consultant just in time for the 2-day clearance sale. There are over 30 great games and puzzles for 50-70% off. Now would be a great time to stock up for birthdays and Christmas! Here is the link to the sale: aimee.simplyfun.com. 

Friday, June 1, 2012

June 1: Morning

This month, I am participating in a Photo-a-Day Challenge with my virtual mom's group (LOVE THEM!). I am so excited to improve my photography skills... although I took classes in college, it was a LONG time ago and we used old school cameras (and I can't remember anything). Anyway, I'll post my photo with them but also on here each day.

Today's theme was "Morning." Sweet Pea got up a little early today - just in time to see Daddy off to work. I can't wait until school is out so we have many more days like this:

Wednesday, May 30, 2012

10 Days Remaining

10 Days
Today begins the 10 day breast milk countdown. Sweet Pea will have gotten BM for 10 months!  I stopped pumping 49 days ago, so she will have gotten milk from my freezer stash for 59 days (until June 9). Although I will always wish I'd been able to really breastfeed her, I am thrilled that I could give her milk for so long.

Now I wonder though: will she start cow's milk at 1 year actual or adjusted? I still add calories to all of her bottles - will I need to add calories to cow's milk?

~~~~~
In other random news, I've just signed on as a Simply Fun consultant under my sister! I am excited for this new adventure and hope it will enable me to spread the word about the importance of play in learning. More to come...

Thursday, May 24, 2012

Companion Planting

T'maters were planted Monday
It's a stunning day in the Kingdom and Sweet Pea and I are going to take full advantage of it. After our morning walk with friends it's time to finish the tomato patch.

My tomato and pepper seedlings all died this year so I took a field trip sans baby to Berry Creek Farm Sunday afternoon and picked up 18 tomato plants, 12 pepper plants, and a bunch of flowers for the deck. I got the tomatoes planted Monday just before it rained on Tuesday - perfect timing.

Yesterday I got my basil seeds in the dirt - I am hoping to have 6 plants although I haven't had much success in the past. I've read a lot about companion planting and although Wikipedia says that in blind taste tests people couldn't tell the difference between 'maters planted with basil and 'maters planted without, I'm doing it anyway.

So, after our walk today we will hit up the greenhouse again in search of Marigolds. I like to plant them all throughout my garden, but am going to focus on the tomatoes today. I think 12 plants should do the trick. Once they are planted, the patch should look like this:

The plants won't be THIS close together in real life!
This weekend the Hubs and I are going to plant the rest of the garden - and I will turn 35.  (Next year I'll stop acknowledging my age!)  It will require lots of sunscreen, bug repellant, and patience! What are your plans for the long weekend?

Wednesday, May 23, 2012

NEK Moms: Blood Draws for Babies

Today at NEK Moms I've written about tips for making a blood draw easier on you and your baby. For example, did you know babies need to be well-hydrated to make it easier to find a vein and get the blood flowing? Learn more at NEK Moms!

Friday, May 18, 2012

Lessons from the NICU: Patience

At one point during our NICU stay it seemed that every baby around us was a full-term baby, and they were all there for minor (at least to me) issues like jaundice. They'd stay a day or two and then would head home completely healthy.

Because I could hear everything from the "cubicles" surrounding my baby I knew what was happening with all of these neighbor babies and could easily hear the complaints from their mothers. Many of these moms were upset that they could not immediately take their baby home, even though they were only expected to stay for a day or two. At this point I'd already been in the NICU with Sweet Pea for over a month and it seemed like we were making no progress toward getting her home.

Often I could not nurse Sweet Pea because she was on bowel rest - the result of not knowing what the hell was wrong with her digestive system. (Eventually Boston Children's did discover that she had a stricture - scar tissue - blocking her sigmoid colon. But at this point she would stop eating and pooping every 5 days and we had no idea why.) She had just gotten over an infection and was starting to eat again, although she was having trouble remembering how to nurse so I was at her side all through the day so that I could practice at every opportunity.

One day, I got to the NICU early enough to snag one of the "nice chairs" so that I could be comfortable nursing and kangarooing with Sweet Pea throughout the day. Just after noon however, one of the nurses came over and told me she needed my chair for a "nursing mother."

Let me tell you how badly I lost it. I gave Mean Nurse the chair (because I knew they were coveted and I did have it all morning) but then immediately burst into tears. Our nurse overheard and went searching for something for me to sit in, finding what was essentially an office chair. Great. I'd really be able to nurse now. I just knew that my chair had gone to one of the mothers with a term baby and that they were going home while I'd be stuck forever in the hospital.

Poor me.

That night I asked if we could go home. Not home, home. But I wanted to be transferred to our home hospital - which has no NICU. I just could not stand to feel stuck any longer, and my heart couldn't take watching any more babies go home while we sat and waited. To my surprise, the docs thought it would be okay. They thought Caroline's main issue was just to re-learn how to nurse and then she'd be fine.
This is how your transport a baby in an ambulance!

Within a couple of days we were at our home hospital. I thought it would be great.

It wasn't.

I'll skip the details but it turned out that 5 days after she had started eating again she was sick. My husband had planned a BBQ at our house to thank all the people who had been helping us out (I did not think this was a good idea - too soon to celebrate in my mind), and while we were at our house our daughter began fighting for her life. The infection that ensued was so nasty that it caused her to stop breathing. To this day I am extremely grateful to the nurse who noticed what was happening and who called for help.

We had some warning that things weren't going well. The whole time we were at our home hospital Sweet Pea looked terrible. She was having terrible gas and diarrhea. She refused to eat and would throw up anything that we forced into her through the NG tube - including her meds. There was faulty medical equipment at the hospital and so the nurses weren't sure at first whether she was really having problems or if it was just the equipment acting up.

The night of the BBQ Sweet Pea had to be intubated so that she could breath and Dartmouth was called to come pick her up. This was not a problem a level 3 hospital could manage.

After a very long night of no sleep (now our second most terrible night ever), we made it to Dartmouth and Sweet Pea was started on antibiotics and tests were being run to determine the problem. However, I learned my lesson: this was not something that I could rush. It didn't matter that I wanted her at home, she was not ready. It didn't matter that I was upset about the term-babies who were going home all around us, Sweet Pea was not ready. I needed to be patient with this process and I hadn't been. Now it felt like we were starting over.

No one with a baby in the NICU wants to be told to be patient, especially when those around you are going home while you continue to wait. But patience and time really are the most powerful warriors.
Life is pretty good now!

Read my first post about things I learned in the NICU here.

Thursday, May 10, 2012

DI in the News


A doctor has found the cure for a mysterious and debilitating condition which afflicted people in a rural part of Sweden with the need to urinate up to 15 litres a day.
Read more: http://www.dailymail.co.uk/news/article-2141888/Doctor-discovers-cure-mystery-100-year-old-pee-disease-Sweden.html#ixzz1uUI8dTfY

Tuesday, May 8, 2012

Steam mop envy

A while back a friend posted on Facebook that she had just used a steam mop for the first time and was amazed at how clean her floors were afterward. I've been jealous ever since.

We installed new hardwood floors in our living room and bedroom last year (to match the ones already in the kitchen and dining room) and they looked beautiful until Sweet Pea's reflux got bad... then it got ugly in here.

Floors that had been relatively easy to maintain now look like they've been smeared with Elmer's glue. Yuck.

So guess what I requested for my first Mother's day:
Yep. A Steam Mop. And I believed it arrived yesterday from Amazon! Can you tell how excited I am?

I've always been practical about gifts and while I would love to spend my first Mother's day being pampered at a spa, this year having clean floors is going to be even more enjoyable. (And no need to use chemicals!)

So what about you?Any odd requests this Mother's day? Anyone requesting "Fifty Shades of Grey"?  

Monday, May 7, 2012

Easiest Mobile Ever

When I was pregnant I spent hours looking at nursery decor, especially once I was on bedrest and had nothing better to do. From all of my "research" I knew I wanted a functional mobile for the crib, and a pretty mobile to hang above the rocking chair. There are some beautiful mobiles on etsy:
from Whimsical Accents
from Hannah and Aspen
from Birds of a Feather by Lacey414
But... all of the ones I loved were $60+! I decided to make my own.

Since I live in the middle of nowhere all DIY craft projects take a lot of planning. You have to order everything that you need online or drive far, far away. God forbid you forget something! After much brainstorming I decided to go the easiest route possible. (Recently I've seen many other bloggers post their mobiles based on the same idea.)

I bought a Photo Clip Mobile from Amazon for less than $10.Then, I found wonderful bird postcards at a quaint gift shop in Southern Vermont. You can find them on Amazon now for $10.80. (Amazon has everything a rural Mama needs!)

Once you have your mobile and whatever it is you want to hang from it, just put it together and you have something cute, inexpensive and reusable. (I would NOT hang this above or near a crib because I am a worrier and would fully expect it to come tumbling down on baby while she's sleeping!)
Hung with a push pin and fishing string.

Our cozy little reading corner!
Other versions of similar mobiles include this fancy bird one at Iffer's Nest, or this under the sea-themed mobile at Renewing My Mind, or this photo mobile at Apartment Therapy. So many different ideas!

I am STILL not finished with Sweet Pea's nursery (again, no big deal since she doesn't live in there anyway) but when I am done I'll post pics!


Friday, May 4, 2012

Lessons from the NICU: Strength

Sweet Pea's first 90 days of life were spent in the NICU at Dartmouth and Boston Children's Hospital. Tomorrow she'll be nine months old and we will celebrate having been home for twice as long as we were in the hospital. Although it's been six months since we left the hospital, it often feels like it was just last week.

I often think about the things that I learned (about myself and about life in general) from spending so much time in the hospital with her. Over the next few Friday's I'll share some of the insights I had from that time.

Glacier National Park - a pic from our honeymoon
I never thought of myself as a particularly strong person. I've survived my share of crap in life, but I've done it with a lot of worrying and crying and lost sleep. However, I became strong - or perhaps just aware that I am strong -while we were in the NICU.

When Sweet Pea was born at 32 weeks gestation I thought we were doing pretty well. The docs were able to stop labor at 28 weeks and I successfully baked her another month (while on bed rest). When she was born on August 5 after 18 hours of scary labor (more on that another time) she was a good size for her age, she had 9s for her Apgar scores, and she came out screaming. I even got to hold her after they got her cleaned up!

Later that night I got to breastfeed her and she seemed to be doing great. Although sleep was interrupted all through that first night because I had to pump, I felt good knowing that Sweet Pea was healthy and had hoped we'd be part of that lucky few who get to take their babies home from the NICU before her due date.
Day 3
The next day we were told that she was slightly jaundice and needed to be kept under the lights. We understood that this was nothing out of the ordinary and actually thought her "sunglasses" were cute; she looked happy under the warm lights in her little incubator. My husband and I got to kangaroo with her off and on over the next few days - although not for very long because we wanted her to get as much photo-therapy as possible so we could take her home. I continued to pump away and would offer her the breast on occasion. On day 5 things started to look bad - this is what I wrote on my personal blog:
We spent the day with Caroline but she wasn't doing so hot. I tried to nurse her but she wasn't at all interested, instead she just fell back to sleep. They continued to feed her my milk but she stopped digesting it and thought perhaps she had a slowed digestive system from the jaundice. We left around 5:30PM and I just had a bad feeling. She was so out of it all day but I am hopeful tomorrow will be better.
Day 5 - under the lights, but we'd been moved out of the critical side of the NICU
Around 9PM that night the NICU called to say that after we left Sweet Pea started to have a lot of As & Bs (apnea and bradys). She had also started throwing up and she was very lethargic. (To this day I don't understand why they didn't call sooner.) We rushed to the hospital:
The doctor's suspected an infection of some sort so they started antibiotics. They took blood and urine for a culture, took x-rays, and did a spinal tap to check for meningitis.  ...She was continuing to stop breathing and her heart kept slowing down, in addition her blood sugar levels were sky high. As we were standing there my nightmare came true. My poor baby would not breathe and turned an awful shade of purple and we were told to leave her area. They tried a C-PAP to get her some air but it didn't help, so they had to intubate her.
The "nightmare" I spoke of was literally a nightmare I had had the night before. I dreamed that Caroline had died in front of me.
Day 6
This was one of the longest nights of my life. Throughout it all I kept telling myself that if I could survive this, I could survive anything - and that mantra came in handy as we experienced similar trauma two more times over the course of Sweet Pea's hospital stay.

Within a week of this event Sweet Pea would be diagnosed with NEC (necrotizing enterocolitis - which, as it turns out, she didn't actually have; instead she would later be diagnosed with a stricture in her sigmoid colon and would require surgery to remove it) and central diabetes insipidus. She would have her first surgery to place a subclavian IV line, her first ultrasound, and her first MRI. We would also experience the DDAVP drug shortage for the first time - we had to wait a day for a diagnostic test because the hospital couldn't get it in.

Things would get worse before they got better, but today we are home with our precious baby girl and she is going great!
She's a reader, just like her Mama!

Thursday, May 3, 2012

Got some...

Just wanted to update everyone on our DDAVP issue. I spent Tuesday on the phone trying to get some answers re: the shortage. The FDA website showed that one company had the injectable in stock so I called them (Sanofi) and spoke to 5 different people - but the last person was incredible. She is a pharmacist for the company and explained that they did have DDAVP in stock but that it was brand name, not generic (apparently they are no longer making generic). She suggested calling our mail order place to make sure that they were checking for both products. I also picked her brain about the shortage in general (she said it was not a raw material issue since they are able to make the other versions of DDAVP but she didn't know why they keep running in to shortages) and asked some more specific questions regarding the rhinal tube (on back order because of the tube, not the medicine) and the nose spray (she tried but was unable to pry the lid off the container). All in all, very helpful stuff.

Next I called our mail order company - I now have the direct number to the backorder department - and asked them if they had checked both brand name and generic. What do you think their answer was? Our conversation went like this:
Me: "Do you have the brand name DDAVP in stock?"
Agent: "Let me check...... Yes, we do but it will cost you $40. Are you sure you don't want to wait?"
Me: "If my daughter doesn't get this medicine will have to go to the ER; so yes, I want the medication now."
I wanted to scream. She proceeded to tell me that yes, the prescription is written for either product so in the future they will check for both. Why they didn't check for both on Monday is beyond me.

Because I wanted to make double-sure that the nose spray cannot be broken into, I went to my handy-dandy DI Facebook group (love them) and asked if anyone had done it before. Not one, but two people responded with pictures and descriptions of how they pry the tops off. Fabulous! There has NEVER been a shortage of nose spray so at next week's appointments I hope that we can come up with a plan to switch to that product (which we would give to Sweet Pea orally, thus the need for breaking into the bottle).

As a side note, once I cleared up the generic/brand issue it took exactly 22 hours for me to receive 4 vials of her meds + supplies for giving it. They sent it all overnight... we now have 6 months worth of meds. Hooray!

Tuesday, May 1, 2012

Suffering for Beauty (Or, Am I Blonde Enough?)

Throughout history women have suffered for beauty. Chinese women practiced foot binding hoping for better marriage prospects through tiny feet. Neck stretching, lip plates, and waist-cinching are all methods used (or previously used) to achieve beauty. In American culture women pluck, wax, dye, paint, tan and surgically enhance their bodies to live up to the pop-culture view of what's beautiful. Often the results of these procedures are anything but beautiful (a common example from middle-school girls is the botched dye job, or in 20-somethings, botched breast implants). I've participated in my share of beautifying, although I like to think less so than typical American women. However, I decided recently to attack my hair with hopes of being a blonde again.

I was born blonde. Well, more of a reddish-blonde; it was definitely not brown. Growing up in Florida and playing outside kept me blonde as a kid. Hours spent at the beach or on the tennis court resulted in a pale, strawberry blonde that I really liked. Even now, when I am in the sun my hair lightens quite a bit. This has allowed me to avoid having to pay for professional highlights or color over the years (and not exactly in a teacher's budget!).


A few times I did pay for highlights. These were mostly in college when I thought student loans were supposed to be spent on things like that. (Oh the lessons we learn the hard way...) When I moved to Atlanta and decided to chop off my hair and donate it to Locks of Love, I got highlights for free. Once the sun-bleached hair was pony-tailed and cut, all that was left was what my Mom would call "mousy brown" looking hair. The hairstylist suggested highlights and instead of comping the haircut, offered to comp the color. Yes! After that I again maintained my hair by spending time on the lake or on the tennis court. Ah, the benefits of free sunshine (and sometimes a little lemon juice)!

 This past July - one of my favorite months for free sunshine - I was 28 weeks pregnant and put on bedrest. After a month of laying around in my bedroom my Sweet Pea decided she wanted to come eight weeks early, with health problems. Besides completely altering everything meaningful in my life, this also meant (get ready for a completely superficial complaint) 90 days spent indoors with practically no sun. Dang. There goes my hair.

I wouldn't have really noticed my hair color but for my dear husband who reminded me - what seemed like weekly - about my new brown hair, which he claimed was lovely. With every remark I cringed. How could I possibly have brown hair? Even my child has white-blonde fuzz on her head, I couldn't have birthed such a thing unless I too was blonde! Now there isn't anything wrong with real brown hair. But that's not what we are talking about. Mine had turned into - gasp! - mousy brown. How could this be? I told myself I didn't care and that this was the least of my worries. But upon returning home from the hospital and realizing that I no longer had a job to go to where I must look decent, I decided to take a chance and color my hair. If it looked bad at least no one but the husband and the babe's doctors would see it.

But why do I care so much about being blonde? First of all, I want to keep the color I grew up with. I always liked being blonde, whether it was because I had heard several thousand times that "blondes have more fun" or more likely,  because my natural color has been complemented by numerous hairdressers. Once, I was even selected to be a model for Aveda in a hair show in Orlando because of the color of my hair. All I had to do was walk around wearing a deep-conditioner treatment for 3-days and I scored a nice check and tons of free product. Also, I associate my hair getting darker with aging - and seriously - who wants to get old?
8th Grade: Notice how the blonde hair just stands out in the crowd? ;)
After reading up on how to select the right color from a do-it-yourself hair coloring kit, I went to the drug store. I debated briefly the pros and cons of using the "dark golden blonde" (was my hair so brown that dark blonde would be enough to lighten it?), "medium golden blonde" (perhaps this was the right shade?), or "light golden blonde." Light golden blonde seemed like it would do the trick. Just enough blonde without being super noticeable. I waited for the husband to go to work the next day before attempting my experiment, mostly because I wondered if he would even notice the new color. After getting the babe to sleep, I began by reading the instructions of the kit, but was rudely interrupted by the phone ringing. I ran to answer it and was surprised to hear that it was the dermatologist I had seen just the week before. The backstory:

Last week Sweet Pea had a couple of follow-up appointments so I figured that while we were at the hospital I might as well get some really ugly stuff (seborrheic keratosis) that had grown during pregnancy frozen off my skin. Although I've had lots of suspicious moles removed in the past, I had been cleared a couple years back to stop my twice-yearly mole-check appointments and just to show up when I thought something looked weird. I was not at this appointment because of a weird mole; I was there to improve how my skin looked. During the visit the doc found a scary looking mole on my back and sliced it off, and I thought Great! So glad to get that removed while I'm here. Moving on...

The dermatologist told me that unfortunately the mole they removed was no good. In fact, it showed signs of severe atypia - meaning that it's the kind of precancerous mole most likely to turn into melanoma if not removed. She told me to schedule surgery and they would make sure to get rid of the rest of it, thus preventing any type of cancer. Wonderful news. And completely ironic too.  Here I am about to color my hair so that it again looks "sun bleached"  while receiving news that all that time spent in the sun has caused potentially life-threatening damage. Now I'll spend the rest of my life indoors or covered up, not to mention that I'll have to keep coloring my hair until eternity!

And the results of that light golden blonde hair dye? Well, what do you think?

Before (left) and after (right). Absolutely no difference!
*And the husband didn't notice either!

Monday, April 30, 2012

DDAVP Drug Shortage (Injection and Rhinal Tube)

Once again I am having heart failure over the national drug shortage of Sweet Pea's medication. Last week I called to get her next shipment and it was scheduled to be delivered tomorrow. Today I got a call from the mail order pharmacy (Curascript - the specialty division of Express Scripts) alerting me that the medication - DDAVP 10mL vials - is on back order until May 31. It had been scheduled to arrive in their warehouse on April 27 but was just pushed back.

I inquired about the rhinal tube as that was our back up plan and was told that they do not carry that in their inventory at all. (Our local pharmacies also do not have either product available.)

We see our pedi endo next week and were supposed to put together a new medication plan at that time but what do we do if both forms of DDAVP are unavailable? Currently the rhinal tube isn't even listed on the FDA drug shortage list - which means no one even knows the problem exists!

There is a nose spray and a pill form but babies cannot take either. If we could break open the nose spray bottle we could make that work by giving it to her under her tongue - but I am not sure how feasible that is. A mom I have befriend online is going to try it out and let me know before the appointment.

And to top off the craziness, DDAVP nose spray is now being sold online as a memory enhancing drug!  Why any healthy person would risk seizures (from hyponatremia) to improve their memory is beyond me... it seems very unsafe.

To report a drug shortage to the FDA you can email drugshortages@fda.hhs.gov. You can also ask your pharmacist to report drugs on back order to the ASHP (prof. organization for pharmacists).

I wish I could end with some sort of call to action but I can't. I have no idea how to fix this problem...

Friday, April 27, 2012

Ancient DI

An interesting article from Live Science was posted on the DI message board today. An ancient mummy who had previously been mistaken for a female was recently discovered to have been very sick before he died in his 20s:
Researchers examined a 2,900-year-old mummy using X-rays, CT and magnetic resonance imaging (MRI) scans. They found that he suffered from Hand-Schuller-Christian’s disease, a very rare condition that left him with lesions in his skull and spine. A large hole on his frontal-parietal bone can be readily seen in this image. His brain appears to have been removed through his nose during the mummification process.






Scientists believe that he may also have had diabetes insipidus as a result of this disease.  Since DI is such a rare disease I'm always glad to see it highlighted in the news (or on TV as was the case in Season 3 of House way back in 2007).
Photo credit: Dr. Mislav Cavka

Wednesday, April 25, 2012

Clean House, Dirty Products?


One of my favorite bloggers wrote about "dirty" cleaning products on Babble today: Toxic Cleaners Hall of Shame (and included a little Ryan Gosling which is fun for everyone!). One of the surprising products from the list compiled by the Environmental Working Group is Simple Green Concentrated cleaner.
Simple Green Concentrated All-Purpose Cleaner claims to be “non-toxic” but contains 2-butoxyethanol, a solvent absorbed through the skin that irritates eyes and may damage red blood cells. This concentrated product is sold in a ready-to-use spray bottle despite instructions to dilute, even for heavy cleaning.
You can find the full "Hall of Shame" list here. 

Because Sweet Pea's endocrine system is already a hot mess, we have been slowly eliminating all chemicals in our household. First to go were any shampoos, conditioners, lotions, and potions containing parabens - and I was surprised to find them in just about EVERY product! While there is debate over whether parabens really disrupt the endocrine system and cause cancer I would much rather play it safe.

On April 6th I was listening to NPR's On Point discuss "Unease Over Girls and Early Puberty" with Elizabeth Weill and Dr. Louise Greenspan. One of the things mentioned was that many people (including many doctors and scientists) are opting to care for their families under the belief that it's better to avoid a product that might be harmful instead of using a product until it's found to be safe. When I heard that statement I thought, "Of course! Who wouldn't operate that way!?" 

But I know the answer: most Americans. I just don't understand why. It's so easy to buy products that are safe and it's even easier (and cheaper) to make your own. After ditching our tainted beauty products I moved on to cleaning products. I've used Shaklee products for a long time now because they are safe, but I added other products to my arsenal as things ran out (mostly because I needed something and just plain forgot to order it). Nothing in my house is on the "Hall of Shame" list and so I did decide that instead of throwing out perfectly usable cleaning products I would just use them until they ran out (after all, I am not working so I can't just waste money!).

My main cleaners these days are plain old vinegar and baking soda. As I need them I will concoct new DIY cleaning potions - I've been compiling recipes on Pinterest and feel a twinge of jealousy every time a friend mentions making her own laundry detergent (but alas! I can't be wasteful!).

One of my fave tricks: fill a zip lock bag with vinegar and tie it around your shower head (I use a rubber band). Let it sit for a while (I do it after a shower in the morning a leave it during the day but that's definitely longer than necessary). Take off the bag and... Tada! Sparkling clean shower head!

Have you made the switch to green household products? Leave a comment with your favorite DIY cleaning solution!

Monday, April 23, 2012

Pinterest Popular

I am the type of person who loves to find something new and then share it with others. I'm sure this is one reason why I love teaching so much and part of the reason why I majored in advertising. If I find a book that I love - I share it. A new makeup product - shared. Recipe - yep, those too. I've found Pinterest to be the perfect place to collect and share my new finds. (Before Pinterest I tore pages out of magazines and kept a little book full of things I love.)

When I was pregnant and dreaming up ideas for the baby's room I perused hundreds of websites and blogs for inspiration. I created several "idea boards" and shared my favorite one on my BabyCenter Birth Board. One of my fellow September Mama's responded and introduced me to Pinterest. I had never heard of it but after checking it out I was hooked. I requested my invite and 2 weeks later I was in - that was 51 weeks ago!
My original idea board for Sweet Pea's room

Some people like just searching through what other people have pinned and repinning the things they love to their own boards. I often do this with recipes figuring that if someone I know made it and liked it, I might like it too. However, my favorite use for Pinterest is to find new things to pin from various sources - just like I used to do with magazines. And I get ridiculously excited when I pin something new to a board and then see people repinning it - to me it feels very similar to winning a student government position in high school (I know, this is so ridiculous!). Anyway, I found a couple of neat things over the weekend that other people seem to like too. What do you think?



Source: umbra.com via Aimee on Pinterest





Tuesday, April 17, 2012

NEK Moms

For those of you who don't already know I've started blogging for NEK Moms. Today I wrote about taking Sweet pea and my Dad to Willoughby River in Orleans yesterday to watch the trout swim up a waterfall - it was incredible. Read all about it here and check out all of the family-friendly things going on in the NEK!

Tomorrow I'll finish up with the Must Have baby gear list!
Can you see the fish in the bottom of this pic?

Monday, April 16, 2012

Must Haves For Baby: Feeding

My "pump station" with all of my tools: pump, chair, water, watch, pump log, Motherlove, chapstick and reading material. :)
Essentials for Feeding
If baby is breastfeeding you may not need any of these items - at least not right away. Although as I suggested in my first "Must Have" post, things could go awry those first few days and you might feel more comfortable knowing that you are prepared. I wanted to breastfeed but had to pump for Sweet Pea; these are all of the things that I needed. If you are formula feeding the only thing you need to add is the formula. I've also listed a few things that you may need if you are breastfeeding. (There is an interesting article on Babble about the cost of breastfeeding. Apparently some women are spending upwards up $2,000 on it?! I don't see how that is possible, although they've estimated $1,000 for a working mother to rent a hospital grade pump. If you really need a hospital grade pump - I did - your insurance will cover it. I'd love to hear from someone who has spent that much breastfeeding.)

  • Bottles - Dr. Browns bottles work for my babe, but you may have to try a few different ones before settling on a brand that works. (So don't go nuts registering for huge sets!)
  • Steam sterilizer - I'm a little psycho when it comes to Sweet Pea staying healthy so we steam bottles every night.
  • Bottle drying rack - You could just put them on a dishtowel but this is so easy.
  • Bottle brush
  • Breast pump and storage bags/bottles - The type of pump you need will depend on how often you are using it. If you are exclusively breastfeeding and only need to pump for the occasional trip away from your babe, you can get one pretty inexpensively. If you are going to pump when you go back to work the Medela Pump in Style is quite nice (and some insurance companies will pay for it if you participate in their pre-natal program). Also, there are those of us who pump full time for various reasons, if it's medically necessary ask your insurance about a hospital grade pump. I used the Medela Symphony for the 8 months I pumped. It's a rental but it's amazing and only cost us about $30/month.
  • Bibs/burp cloths - I got a lot of hand-me-down bibs from my sister and I made burp cloths out of flannel. Had I known how bad reflux could be I'd have made them comforter-sized! 
  • Nipple cream - I highly recommend the Mother Love products.  If you are pumping you can also just use olive oil.
  • Nursing bras - I bought two good ones and two sports bra-type nursing bras. Total spent - about $100. Had I know that I wasn't going back to work I would have only bought the sports-type of bra which is the most comfortable in my opinion. And they were $10/each!
  • Boppy - I mentioned this item on my "Adding to your stash" list. It's not only good for propping baby up while you feed, but it also comes in handy for tummy time and to practice sitting up.
  • Mother's Milk tea and oatmeal - if you are pumping or breastfeeding you might want to have these on hand to help with your supply.
  • KellyMom - this website has been my go-to source for almost all of my breastfeeding and pumping questions. Even if you plan to - or end up - formula feeding, there is a ton of great information on this site that is incredibly useful.
Have I missed anything that you found helpful? (I purposely left off "hooter hiders" and bottle warmers because I think you can live without them, am I wrong?)
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