Saturday, October 30, 2010

Doctor #Something-or-Other: Chiropractor

Today I took baby to see our wonderful-and-amazing chiropractor, Dr. Jenny (who specializes in pregnancy care but also does regular chiropractic care), and while we were there also got her take on infant reflux. She has recommended weekly adjustments (hurray!) plus probiotics, so we're starting that immediately. We have time for 3 adjustments total before our GI consult, so we're going to see if we can make a dent in this thing significant enough to avoid the reflux test (of course, if baby's back-arching problems are non-reflux-caused, it won't make a difference). Here goes! Anything to avoid the reflux test.

Having a busy weekend! A lovely wedding last night, and Halloween tomorrow before a busy week starts. I'd write more, but I should be doing dishes! Cheers, all!

Monday, October 25, 2010

Brief Doctor Updates

The briefest of updates, as I'm dead tired and ought to be in bed!

Today we started DSI therapy (play therapy) with baby - today was just the interview/evaluation, so the real thing will start in two weeks. We have a very sweet therapist.

Today we also saw baby's ped for his 1-year check-up (we're super-late). My most important/urgent question for him was - Do we, or do we not, need to do the GI test and the brain MRI? His answer was a reluctant, "Yes, do them and do them now" - reluctant because he dislikes the tests as much as I do, but he does believe that they are necessary. His word is good enough for me, so we are now in scheduling phase.

Then lastly, an interesting/amusing exchange between me, our geneticist's office, and our insurance.

Phone call #1 - from the geneticist:

Them: Just spoke to your insurance, and they won't cover the diagnostic blood test X because they don't cover any genetic testing.
Me: *Gulp*

Phone call #2 - to our insurance:

Me: Do you cover diagnostic blood test X?
Them: Yup, it's covered!
Me: Hmm. 

Phone call #3 - to geneticist

Me: They say it's covered!
Them: Really? Did you check the specific codes?
Me: No... oops. Will do.

Phone call #4 - to our insurance

Me: Are these codes covered?
Them: Yup! All covered 100%!
Me: Yay!

Phone call #5 - to the geneticist

Me: They say it's all covered!
Them: Did you specifically say "genetic testing"?
Me: Nope... oops. Will do.

Phone call #6 - to our insurance

Me: Do you cover genetic testing?
Them (now a different person): Nope, all genetic testing is excluded from your policy - none of it is covered. The first person you spoke to didn't know what she was talking about.
Me: Ah.

So after all that, the end result is that the test (which costs thousands of dollars) is not covered. The insurance gave me the appeal process, which we are now beginning. If it doesn't go through, then we will have to give up the hope of diagnosis and just treat symptoms and then hope for a clinical (i.e. symptom-based) diagnosis from our geneticist at a later date as more of his symptoms emerge with age. Not satisfactory to me - like most Americans, I like pinned-down labels! But we'll see where this whole thing goes... there are a lot of different possibilities out there, and we're just beginning.

My goodness, the medical system is exasperating!

Night, all!

Thursday, October 21, 2010

Updates on Baby

I forgot to mention that we had baby's evaluation with occupational therapy (i.e. fine motor skill therapy) on Friday. It was done by an excellent therapist at our house. Baby (who is now almost 14 mos.) measured, by ability/mobility/etc. to be in the 4-5 mos. category, which is where he has been rated by his other therapy and medical evaluations.

The recommendation was made that we begin OT with baby, but after discussing the issue with our DDD coordinator, we have decided to hold off on that, simply because we just can't take too much more! We're already slated for physical therapy and DSI therapy (I can never remember what that stands for), not to mention oodles of more specialist appointments - so we've agreed that we'll reevaluate at the beginning of the year. I'm so thankful - I'm pretty much at my limit for appointments and such.

On Monday we see our pediatrician for baby's check-up - thank goodness! I have half a million questions to ask him, the most important of which are his opinion on the advisability of the GI test and/or the brain MRI. We have a really good working relationship with our pediatrician - he is super-non-interventionist, and prefers to let nature take its course, so if he thinks that these tests are necessary, I will feel completely reassured that they are necessary and that we should go ahead with them. It's great to have a trust relationship with care providers! It's kind of like the relationship we have with our midwife. If she said "You need a c-section!", I would say "Hand me a knife!" - because we have such a strong bond of trust and friendship, and I have seen her be so honest and respectful of my decisions, that when she gives advice in an emergency, I don't need to question it. It's pretty much the same with our pediatrician! So I'm hoping he'll be brimming over with advice on Monday, because we can sure use it!

Right now, besides therapy, baby is scheduled in November for an ophthalmological (eye) evaluation, a physical therapy evaluation, and a GI consult (preparatory to the reflux test, if we go ahead with that), and we'll also be doing the micro-array blood test as soon as paperwork for that arrives. It's going to be a busy month - hopefully a productive one!

I have to admit to feeling somewhat frustrated over this whole thing.... Over the past two months, we have met with something like six or seven (or eight or nine) caregivers, had countless evaluations/exams, done two blood draws, an EKG and an ultrasound, spent several hundred dollars in co-pays, and run all over the Phoenix valley.... and it seems that no one really knows what is going on, nor are we much closer to a diagnosis. Or rather, it's not quite that bad. We have gained a lot of fragmented information, seen a lot of people and forged a lot of good working relationships, checked a lot of specialists off of our to-do list, and ruled out a lot of possibilities - it's just that we are lacking any sort of final diagnosis or coherent direction with regards to treatment.

One thing that bothers me about the medical scene is that it is so fragmented. Each doctor gives you his/her opinion, but each doctor is working in a vacuum, so it's impossible to draw all the cords together. What we really need is all of those doctors together with us in one room for a few hours so that they could bounce ideas off of each other and argue up a storm while they discussed ideas. I think that would be much more helpful than trying to network all of these individual doctors and practices together long-distance via faxed reports. I also see why working the medical system takes so long - with delays and long time spans between contact and actual appointments, it could easily be another 4-6 months before we have anything concrete. Yikes!

Okay, off to do something more concrete! I'll update after Monday's appointment.

Monday, October 18, 2010

Camping Trip #2 for the Year

This past weekend we had our second two-child camping trip - this time to Lost Dutchman State Park, located outside of Apache Junction, AZ, at the foot of the Superstition Mountains.

All in all, a good trip!

By which I mean that we're all alive, relatively unscathed, and still on moderately good speaking terms with each other.


After we got our camp site and ate lunch, we realized that it was too hot and shadeless to stick around, so we drove back to Goldfield Ghost Town, an attraction we'd noticed on the way in - only 1/4 mile away from the campground.

It was fun! We didn't stay long, but we did take the train - how could we not? - which our eldest greatly enjoyed. Here's the view from the train:

There are two places to ride - an open-air car or the caboose. We were put in the caboose. A word to the wise - do NOT go in the caboose. Hot, airless, enclosed, hard to see anything, and impossible to hear the driver (he gives a brief history of the Superstition Mountains). But still fun!

Pictures of the ghost town - I have no idea what is real and what is "yea olde ghost town" invented for tourists:

Our eldest's favorite - an antique steam tractor that is the exact likeness of "Trevor" on Thomas the Tank Engine:

The church - "Church on the Mount" - still a functioning church, and my ideal church building - loved it!!!

The church's minuscule Sunday School/fellowship hall - adorable!

Our camp!

Our car with the Superstitions in the background:

We actually ended up taking two cars with us because we had SO MUCH STUFF. And believe it or not, I did my absolute best to pack lightly. Crazy.

Baby waking up from his nap! He didn't get very good naps during our trip, and the next day (when we came home) he took five naps - basically slept the entire day away! Poor baby, he was so tired!

The two most exciting parts of the trip for our son - the TENT and the AIR MATTRESS. Life doesn't get any better. 

Our camp kitchen - hot dogs, SPAM, baked beans, marshmallows.

Baby sacked out in his stroller.

Our eldest's attempt at photography.

So... we had fun! Outdoor cooking, a visit to a local attraction, two trips back into town for forgotten supplies (tarp and lantern batteries... and ice cream while we were at it), half an hour driving around Apache Junction while we waited for the sun to go down, a walk around the campground, and all the fun of sleeping four people in a tiny tent. Wildlife: Lots of desert birds, flocks of quail, tons of coyotes at night (I love their sounds!!), a spider tunnel so big that it must have belonged to a tarantula, ground squirrels, and others.

The downside to the trip was the fact that one of our party simply has a hard time with camping. So beside all the fun, it was rather stressful. So when we got back, we had a long discussion about how we can make our camping trips less stressful, and we've come up with ideas that we're going to try - possibly renting a tent trailer, or trying to find a cabin, etc. etc. However, this trip was much less stressful than our last, so we're at least making progress!

Another factor to consider was that this trip, like all others, turned out to be much more expensive than we anticipated. We have allotted $15 per month for "camping money," and I had $25 for this trip - $15 for our camp site and $10 for unforeseen expenses. The actuality? The cost was more like $75 when we added up camp site, train ride, trip #1 for supplies (and a toy), trip #2 for supplies, ice cream, and lunch when we got back because we were too tired to cook. So my $25 was completely insufficient! However, as we only go twice a year, saving $15 per month should work out pretty well for future trips - I'll just have to be sure to have enough saved up. The trials of learning a budget! 

But all in all, a success!

Wednesday, October 13, 2010


Yesterday we made our long-awaited foray to our geneticist - the last specialist on our list of specialists to visit that was assigned by our pediatrician.

I went in with great hopes. The other visits (neuro, cardio, developmental peds, therapy, etc.) I kind of considered "fact finding" missions - just data-collecting, which would culminate in this final visit when we would receive ANSWERS.

I was wrong.

We have no answers, just more questions... and more specialists to visit. *Sigh*.

We had a super-long visit - first with the nurse, then a genetic counselor, then the intern, then the doctor with the rest of the team. The doctor was truly excellent - highly recommended. We talked, and talked, and talked, and they looked at baby and asked questions and looked at our family tree. Very good stuff.

However, no answers. Not even real guesses. She named a few syndromes that vaguely matched his symptoms (Angelman's and Smith-Lemli-Opitz - what a mouthful!), but said that she was not satisfied with either solution.

First off, they are going to send us (as expected) to get the more detailed chromosome micro-array test. That will just be a blood test, and it should tell us all we ever wanted to know about Glenn's chromosomes.

However, the doctor told us that this test is so new that even though we will get a diagnosis, there may be no information on it (though there likely would be in a few years). However, it's a starting place. That will be whenever we get the paperwork through, probably in 1-3 weeks (plus processing time).

She also requested an infant eye exam, which we have set up for November.

She also requested two tests that we're not sure about. The first is a GI test for reflux, to see if reflux is causing his back-arching tendencies. The second is a brain MRI, to see about the same plus the other neurological symptoms.

We agreed to them, but after researching the tests, are really questioning them. The GI test is an unpleasant test with risks of its own, and it also requires a 12 hour fast. I am really not happy about putting an infant through a 12 hour fast. Baby is not sleeping through the night - he eats several times per night - and trying to keep him happy without food for 12 hours would be a nightmare. The brain MRI requires general anaesthesia for an infant, and will, I'm sure, also require a fast because of the anaesthesia.

So our question is - How much of this stuff is truly necessary? We want to know what's going on, because we know there are some moderately serious things afoot that we need to know details on. But we don't want to put baby through painful tests if they're not really necessary. So tonight I drafted an email to send to the geneticist, asking, in short, which tests truly are mandatory and which could be avoided or postponed. I hope that she is willing to work with us and isn't just annoyed (an understandable reaction!).

At this point, we have more specialists underfoot than I can even count - baby's medical records are in a 1 1/2 -inch notebook and about to expand to a 2" because we have so much paperwork. I am not desperately worried about the state of baby's health, because whatever is going on he is still happy and content and not suffering or actively sick - and those are my main concerns - but I am worried about how long this process is going to take and the path that we will have to take to get there. So far our path has been easy - just a checklist of to-do items, but now it's getting a bit trickier.

(I just tried to send that email mentioned above, and it timed out and erased everything - blast! Now back to writing it all again from memory.)

Have an awesome week, all!!!

Input Needed

Hello, HG mamas out there! I would love any input you all might have on behalf of a friend who is dealing with some severe NVP/HG right now. She has had bad NVP/HG for her whole pregnancy, but now, at 24-ish weeks, after several weeks of "it's finally getting better," her NVP is back - stronger than ever and getting worse. She has tried Unisom and Phenergan, both to no or little use, and the Zofran that got her this far is not helping that much anymore. She is still losing weight, though baby seems to be doing well. Does anyone have any advice for this mama? Medications to try, good advice to give, how to know when to get help, etc. This is beyond my knowledge, so I'd love to hear from experienced HG mothers out there.

Warning: Absolutely no "brisk walks in fresh air" or "sucking lemons" or "listening to soothing music" etc. etc. etc. Heavy duty advice only!

Tuesday, October 12, 2010

Unusual Morning Sickness Remedy

I found this really randomly:

Birth-Joy: Morning Sickness Cure

Being that I know absolutely nothing about anything mentioned here, I cannot say yea or nay - but this is a morning sickness blog, so I post all that I see! If you try it and it works (or doesn't work), do let me know!

Monday, October 4, 2010

Worrying and What Came of It

I have been spending a lot of time worrying lately. Not that that's anything new - I'm definitely a worrier by nature. I can worry with the best of them.

And oddly enough, I don't worry about some of the things that normal people worry about. For example, baby's health problems - right now, at least, I'm not the least bit worried. I've been able to leave it completely in God's hands.

Anything else? *Worry, worry, worry.*

Part of my problem is that I am really (too much) into planning. I plan-plan-plan-overplan - lists, plan A/B/C/D, etc. etc. etc. I plan around eventualities that may never happen, around all the different outcomes that may come from any decision, etc. etc.

In fact, not too long ago, I actually started a heated discussion with DH in the car over "You know, what if, in 20 years or so, one of our sons does such-and-such? I know it may never happen, but we need to have a plan now!" Yes, seriously. DH, who in true spousal-opposites fashion, does not like discussing the future at all, was predictably irritated, and we ended up going at it hammer and tongs.

Anyhow, as I said, I've been worrying a lot lately - about so very, very many things. Should we have any more children? (And if so, how many, when, how, in what manner, according to which birth control philosophy?) Where are we going to call home for our church decision? (I thought we had FINALLY gotten that squared away, but DH chose to throw another monkey wrench into the works this past week.) How are we going to educate our children - home, public, private, charter, hybrid, Montessori, Waldorf, traditional, etc.? What is going to be my eventual calling within the birth community? (Yet another question that may have 20 years before I need an answer.) Should we stay in Arizona, or should we be open to moving, especially as my parents are considering a cross-country move?

Yikes!!! The funny thing is that all above questions could wait a good year or two or more for an answer - it's just that I am a complete stress case with any open-ended, unmade decisions in my life. I hate-hate-hate having any unmade decisions, and having a plethora of them has been beyond-stressful.

Well, a night or two ago I was praying through these decisions, and I felt a persuasion that I just needed to stop worrying (and stop trying to get the unmade decisions made) and leave these questions with God for the time being - as it were, at the foot of the Cross. To just drop my worrying, leave my questions and problems with God, and trust him to make the answers known to me in His timing, rather than mine.

Can I say that this is a difficult proposition?

But I am doing my best. Not that it will definitely stay that way, but I am trying to wait for God's timing. After all, He knows if He wants us to have more children.... how He wants us to educate our children... where we are going to call our church home.... how I will eventually be involved in the birth community.... where we should be living. I just need to trust him to reveal His answers in His timing.

Just a few thoughts.... worrying does not go away easily! But I'm doing my best.

"Natural Morning Sickness Remedies"

Ran across this on a blog I follow, so I thought I'd share! Nothing much to do with HG, but for normal morning sickness:

Normal Morning Sickness Remedies

I'm also adding another sidebar category (this will be the first entry) for remedies for "normal" morning sickness. Just for any NVP mamas who wander across!

Sunday, October 3, 2010

Week 1 of Fall Challenge

Up late after a long debate with DH, now relaxing with a quick blog post. Tomorrow starts the first week of Women Living Well's Fall Challenge - she is giving one practical and one spiritual tip each week to make our homes inviting and welcoming and loving. I can use all the help I can get! So tomorrow, I'm getting out my candle... and then working on her much-more challenging spiritual tip.

Are You Distracted and Distant or Making Your Home a Haven?

Oh, how very, very, very convicting.... definitely check out her article!

This week will have preschool, AWANA, MOMS Club, and our meeting with the state therapy people - both to transfer our care to the next department, and to set up a schedule for baby's therapy. I find the whole process rather intimidating - I'll be glad when it's over! And the bigger challenge will be finding things to do with our eldest while I am doing therapy with baby. I do NOT want to use the TV as a babysitter, especially multiple times a week. I am considering trying to hire babysitting.... but that could get pricey. I would appreciate prayer for the whole process, and that I would be able to get the scheduling and the personnel issues worked out easily and smoothly!

Have a great week, everyone! Love to all!

Saturday, October 2, 2010

Good Stuff, Part I

A while ago, I posted that I was going to make a concerted effort to purposely neglect my hobbies (especially birth-related lore) and to focus on my spiritual life and my family.

It has had great effect! Let me share some of the great things that have happened.

(1) I discovered that there are great resources to be found in Christian mommy/homemaker blogs! I got a recommendation from a friend for one or two, then went off of "blog roll" lists to get more, and am now reading a considerable number of them. I wouldn't have believed it, but they have been SO incredibly helpful! They have encouragement, reminders, gentle correction and admonishment, practical ideas for child-rearing, discipline, family time and a host of other topics, recipes, and other great stuff. So helpful! Here's a partial list - I don't have time to do the links, but if you google them and add "blog" to the end, they'll come up:

A Wise Woman Builds Her Home
Angel Wings and Apron Strings
girltalk - Conversations on biblical womanhood
Like a Warm Cup of Coffee
Women Living Well
Passionate Homemaking
Raising Homemakers
Raising Olives
Working on a Full House

Good, good stuff. Let me know if you have any others to recommend!

Extra Note: Today I achieved recipe nirvana with a recipe found on one of these blogs: Pumpkin Waffles with Spiced Whipped Cream from Women Living Well. So incredibly good. Try it - and don't forget the whipped cream. Yum yum yum. 

(2) Whenever I get inspired, I start making organizational notebooks. About a month ago, the papers flew as I went into a notebook frenzy! It was just great. I started out by making a notebook with a tab, paper, and page holder for each major holiday. Then, whenever I see an idea or a tradition that I want to add, I can slip the article into the page protector or note down the idea.

This is really helpful for me, because I am clueless when it comes to decorating, traditions, etc. They just don't happen spontaneously for me. So planning is in order! I'm excited to see where they take us as this year's holidays start off.

After that, I made further notebooks:
- A travel notebook - with tabs for ideas, planning, locations, car games, yearly vacations, camping trips, etc.
- A marriage/womanhood notebook - tabs for marriage, personal development, goals, etc.
- A parenting notebook - tons and tons of tabs for parenting advice, school info, snack ideas, etc.

And I'm getting tons of articles from the blogs I'm reading that I copy and print off for my notebooks!

(3) I'm getting serious about planning trips for our family. We've never been into traveling - no money and little motivation. But our trip to Dallas-turned-Tucson this summer made me realize how fun family vacations can be, so I'm now saving and planning for one short family vacation a year plus two overnight camping trips (spring/fall), plus our usual trips to see family.

(4) I've really gotten into using the library. I'm using several anthologies of children's books - "The Read-Aloud Handbook," my favorite, plus "Honey for a Child's Heart" and "Books Children Love" - I order the books every week and pick them up. It has been great! I'm really enjoying getting into children's books, especially now that our son is old enough to enjoy beginning chapter books.

I used to think that writing children's books was rather silly - as in "I could do that while I brush my teeth" - but now, upon reading more, I realize what an art and a craft there is to it. Love it!

(5) I am doing my best to spend time with my family and not obsess over the house. Sort of. I'm an obsessor (sp???) by nature, but I do my best. I am also learning speed cleaning!! I read "Speed Cleaning" by Jeff Dial and the Clean Team, and though I didn't get to finish it before I had to return it, it was excellent and I highly recommend it.

One of the main points of the book was that a majority of "cleaning time" is not spent actually cleaning, but running back and forth getting materials to clean with. This is certainly true for me! Time running back and forth to get the vinegar, the windex, the paper towels, the scratchy pad, etc. etc. The answer, according to the book, is to carry most things on one's person, and other things in a carry-all that goes to each room. That way, one can move around a room only once to clean it, plus another time to vacuum, and then one is done.

So, in my apron (and with me) I now carry a toothbrush, a bottle of windex, a bottle of 409, a moist cleaning towel, a duster, and a whisk brush. In my carry-all I have bathroom cleaner, Barkeeper's Friend, more cleaning cloths, a scratchy pad, and a couple other things I can't remember. I need to get a proper cleaner's apron rather than the flimsy one I have now, but it still works.

And it works! I can now clean my house (sans vacuuming) in 30-40 minutes. So I do that during one of our son's preschool times, and the vacuuming/mopping during the other. It doesn't include deep cleaning, but hey - I wasn't getting to deep cleaning anyway! It's been a big improvement for us.

(6) I resuscitated my prayer life with the uber-new-and-sophisticated Ritz Cracker Box Method, and it's been a big success. Most prayer methods drive me to distraction because of their eternal sameness, but having the variety of this method has been a big improvement. Similarly, my Bible reading time has also been improved simply by borrowing my husband's ESV (rather than my NLT) - I love having a new version (my favorite so far!) and new study notes to read.

(7) I have been purposely studying parenting - reading good books (like "Say Goodbye to Whining, Complaining and Bad Attitudes in You and Your Children" - great book!) and praying daily (and fervently!!!) for wisdom, grace, and the character needed for being a good parent. It has really had great effect.

Parenting is hard. It is the hardest spiritual/emotional thing I've ever done in my life (the hardest physical things are reserved for HG and childbirth). It has tested me beyond anything I could ever imagine - and I'm only 20% done with the first child! (And 5% done with the second!) Some days I have literally ended my day in tears - and I'm not the crying type. I have realized how much I need God's strength, wisdom, spiritual filling, and grace. Focusing on learning about parenting and on praying for wisdom has had great positive impact.


I think there's more, but I need to get to bed! More later (if I remember anything), and have a wonderful Sunday, everyone!!!