Genetics

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!

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!

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!

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!

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
AnneElliot.com
Femina
girltalk - Conversations on biblical womanhood
Like a Warm Cup of Coffee
Women Living Well
MckMama
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!!!