Thursday, August 26, 2010

Doctor #2: Developmental Pediatrician

Yesterday we traveled half an hour north to baby's appointment with a developmental pediatrician. It was a good visit, with lots of time and talking and looking over baby. However, if I was looking for conclusions, I went to the wrong place! Instead, we have more questions and another slew of doctor's appointments to make - to our original list (neurology, genetics, developmental peds, physical/occupational/speech therapy) we now have added cardiology, vision/hearing, and two state-run physical therapy programs. My goodness!

This doctor could not give us a definite diagnosis, as our blood tests are still pending, but she did give us her best guess, which was a tad intimidating - or rather, it's not too scary to me as I've had it on my radar since baby was born (due to something I noticed in him at birth, but then disregarded), but I think DH is a bit freaked out. We should know as soon as the blood tests come back! Of course, it could be a host of other things, so hopefully the blood tests will shed light on the question rather than just raising more.

I had no idea how complicated this medical thing could be! We've always enjoyed good health, so the complications of getting doctors connected, writing down and tracking vast amounts of information, contact information, appointments, and notes, is a bit overwhelming - though, as an over-organized type of person, I do enjoy the paperwork challenge. I just graduated our baby-medical-control-journal from a 1/2-inch to a 1-inch, due to the burgeoning paperwork having burst the smaller size, so we are on our way.

Hopefully answers will be here next week! Love to all!

Friday, August 20, 2010

The Trend Continues

Did I say that this past weekend was crazy? I lied. It paled in comparison to the week that followed it. If anyone would have told me what this week would have held, I would have laughed in disbelief. What a week.

Our friend in hospice died this morning. His "two to six weeks" ended up being not quite five days. We were able to visit him three times earlier this week before his condition deteriorated past being able to take visitors. He was not conscious during our visits, but we were glad to get to spend the time there with him and with the family and our church family. Besides the grief at his passing, there is also our grief for three small kiddos who no longer have a daddy on earth, two of whom are too young even to really remember their daddy.

This actually was my first in-person experience both with dying and with cancer. I have known plenty of people who have died, and plenty who have died of cancer, but they have always been out-of-state relatives, or relatives who died when I was too young to know what was going on, or other not-in-person situations. (Another church friend of ours died 4 years ago - he was also dealing with brain cancer - but he died from post-operative cardiac arrest rather than the cancer itself.) It was a bit shock to experience in person, especially as I had not before seen how cancer ravages its victims. When we first saw our friend, four days after he entered hospice, I would not have recognized him had not his sweet wife escorted us to his room. And that was just one week after they went to the doctor to find out what was making him feel "off." Three days later - hospice, and he only lived one week more. Such a tragedy.

I have been honored with a request to play at the service, which will be on Sunday.

In less tragic news this week: On Tuesday, I took my midwife's advice and took our 11 1/2 month-old in to our pediatrician to go into the issue of his developmental delays. The reaction from him was immediate - Yes, there is something going on, though he couldn't tell me what it is. He is such an awesome doctor - we have the best pediatrician ever. Seriously. He's great. Anyway, he spent something like an hour and a half with us, going over baby and talking about possibilities. At one point, not too far into the exam, he said, "Hmm, this looks interesting. Let's get everyone in here to take a look." So for the rest of the time, in one small exam room we had me, our 4yo, baby, the doctor, a nurse-practitioner, and two interns. It was crazy! However, it was good and I was thankful to be taken seriously.

Our doctor ordered blood work and a host of specialists' appointments - geneticist, neurologist, developmental pediatrician, and physical/occupational therapy. I spent Tuesday night making up a control journal to keep the various doctors' offices straight, plus making forms to record phone conversations and appointments and to corral all the information - test results, contact information, personal information, prescriptions, etc. After that I felt much better! Organizing things always makes me feel on top of situations. The past few days have been spent on the phone with various offices and receiving paperwork to fill out. The form for one office alone is 26 pages! (And would be longer if he was school-age!!)

We did blood work on Wednesday morning. Unfortunately due to the volume of tests ordered, they weren't able to do all of the tests with one draw - so we have to go back next week too. Poor baby. They had me hold him during the draw - and if you know me, you probably know that I am the most squeamish person in the world when it comes to needles and blood. That's odd for someone who's hobby is actually in the medical-ish world, but thankfully homebirths occur WITHOUT needles, so I am able to indulge my passion in a needle-less fashion. Otherwise I would doubtless have a different hobby, LOL! So I held baby and kept my eyes shut tightly so that I wouldn't see anything - and I had a hard enough time not going under the table as it was! Yikes.

So we are on our way - we should know results within the next month or two, so hopefully we'll get a definite diagnosis rather than a vague umbrella term meaning "We have no idea what's wrong with the little guy, so we'll just give it a vague label." Our doc is thinking along the lines of a genetic condition, due to some physical signs that he has along with the developmental delays - things like clinodactyly (crooked pinky finger - can be normal or can be associated with genetic conditions like Downs), a simian crease in his palms (ditto), and some unusual facial morphology (close-set eyes, lowered ears, etc.). We're all taking our guesses, but hopefully the tests will give definite answers.

So this has been a tumultuous week, in every sense of the term. Worry over our baby, grief and shock at our friend's passing - the whole gamut. A week like this can go away and not come back - any time!

Love to all.

Monday, August 16, 2010

What a Weekend

This weekend has been all over the place - geographically and emotionally. Yikes!

On Friday we got some news related to DH's job that was both elating and disappointing, but I won't write about that here - hey, it's the internet! :)

I also heard the news (through Facebook hints) that a dear friend's baby has arrived, though said baby is now THREE DAYS OLD and we have as yet seen NO PICTURES!! Hopefully our pictoral ignorance will be soon remedied this week!

On Saturday, I had a to-do list the size of a small novel, due to the fact that we were having dinner guests (first in a year!) and I was taking dinner to a new mama and her family - and due to various dietary restrictions, I couldn't cook the same thing for everyone. Then for some reason I decided to complicate that by making a huge family breakfast - not sure what I was thinking on that one, but what with one thing and another, I spent the whole day in the kitchen! It was crazy.

The dinner party went splendidly, though, and it was so nice to see some old friends whom we are only able now to see a few times a year. Of course, long uninterrupted conversations are now a product of bygone days, with two kidlets running about, but we tried! It was a fun time.

On Sunday, we tried another new church - our friends' church, actually. DH liked it, I did not. And for some reason I had our old church on my mind and how much I miss it... and I'm afraid I got a bit squiffy with my hubbie. Sweet and mature I was not. I'll have to try again next time.

Thankfully, I was able to get out of the house (rather than continuing the squiffy-ness) to take dinner to our friend with her new baby. I got a glance at the little chap (asleep and comfy in his Moby wrap) and got to chat with my friend and her hubby for a few minutes. A nice break! My friend had probably one of the most difficult births on record in my experience (super-long several-day labor followed by transport to hospital and cesarean), so it is so nice to see her looking well and happy.

Then that afternoon, we had a visit with our midwife - hurray! It had been far too long - something like 4 months. I find that I really love reconnecting with her on a regular basis - she is now a good family friend.

While we were there, I went ahead and brought up something that has been on my mind with increasing anxiety these past few weeks - our baby's physical milestone development. I have thoroughly enjoyed this past year of having a docile, non-mobile baby, but as his first birthday approaches, it has dawned on me that he is not where he should be physically. At nearly 1 year of age, the most he does is turn over - no sitting, scooting, crawling, etc. So we talked it out, and even she (as an extremely non-interventive health care provider) confirmed that something is not as it should be, and that I should bring this up to our doctor. That will be this week (tomorrow), so I'm mentally biting my fingernails as I wait for that appointment. I can worry with the best of them, I'm afraid!

On our way home, we stopped by a friend's house to drop off some borrowed DVDs, and while we were there she gave me some devastating news about a church friend of ours, a young man with three small children - he has lost his long battle with brain cancer and has now a matter of only days or weeks to live. We have been in a state of shock and grief ever since.

Then I walked in the door to an email from my mom telling me that I lifelong friend and neighbor of ours has been diagnosed with multiple malignant bone tumors and is starting chemo tomorrow.

Oh, and our eldest son is down now with a cold.... And a friend's (darling, adorable!!) twin babies arrived last night (CUTE!)... And we're having a sewer line put in today... And I'm spending considerable time worrying about preschool issues (more on that later).... Has that packed enough into one small weekend? I think there were a couple of things I missed, as well.

Here's hoping that this week is a calmer one, though I know it will be a sad one as we receive news of our friend's last journey with cancer.

Saturday, August 14, 2010

Last Night....

We all go to bed late. When I go to go to bed, I see that baby was awake in his cradle (next to our bed), so I have to wait for him to start getting sleepy again before I can lay down.

I finally lay down and am reading my Bible... when our eldest wakes up with a nightmare. I spend 15 minutes calming him down, then go back to our room. Baby is awake again. So I go out to the computer and waste some time looking up information on schools. Go back in, baby is sleepy, good, I read, lay down. Baby immediately wakes up and starts crying. I give up and pull him into bed with us (he usually comes into bed with us when he wakes during the night, but I like to start off the night alone). He goes back to sleep; I start falling asleep.

Then the 4yo starts crying again. That's when I really start praying. "Lord, please let him fall asleep so I can get some sleep before I go insane." Thankfully, the prayer is answered and everyone goes to sleep for the night, at who-knows-how-long after midnight.

Five hours later, from our eldest's room - "Mommy! Can I get up yet?"

It's going to be a long day!

Wednesday, August 11, 2010

Tossing Out the Red 40

Last night, we attended an Eagle Scout Ceremony for a friend's teenager. Afterward, they served candy (M&M's), punch, and cake (white with white and black frosting). Our eldest son had some of each.

Fast forward to today: He was a little hellion. All day. It just went on and on and on and on. By mid-day, I was ready to sell him to the gypsies.

Was this just a "bad day" with normal discipline issues? Was it the sugar? The fatigue? The food coloring?

I don't know - probably some of all of the above. And I don't like to blame bad behavior on physical issues, because it feels like an excuse ("Sorry, Susie, the reason my son is destroying your crystal collection is because he's tired. It's not his fault.") And discipline issues are a constant issue for us; I am a constantly-learning parent, and he is a challenging child. However, I have noticed a uniformly bad response in our son to red 40 food coloring - which, I learned after looking it up this evening, is a major component of black food coloring (apparently it's just a globby mass of all the different colors mixed together - yum!).

Whatever the cause, I am going to keep a closer eye on it - one piece of cake is not worth 24 hours of parental suffering.

Though telling a preschooler, "Sorry, I know everyone's having cake, but you can't have any" is a difficult proposition! (Though I know parents of celiac kids have to do it all the time.) A new challenge!

Something to work on.

And here's hoping tomorrow is a better day, because I may start seriously looking for gypsy bands if it's not!

Saturday, August 7, 2010

Pregnancy Reenactments, and an Ode to Zofran

This past week, I hosted a playgroup at our house. It was great!

And then, about three hours afterward, one of the moms emailed to say that her son, who had attended the playgroup, was now coming down with stomach flu.


So I got out the rubbing alcohol and went over the house fixtures (doorknobs, light switches, etc.) and as many toys as I could (which is a losing battle, let's face it). Then we sat down to wait.

As the weekend came to a close, I was hopeful that we had avoided any infection. And then, Sunday night, DH looked at me and said, "You know what? I don't feel so well."

Two hours later, bam! Stomach flu. He was down for two days, having a lovely time (I'm sure I don't need to include details!).

We kept disinfecting and eating Vitamin C, and the week wore on.... hope began once more to blossom.... and then yesterday morning I woke up, did my normal routine, sat down to play the piano (my current method of waking up DS), and then suddenly noticed, "Wow. I don't feel too well. Oh, shoot."

As I quickly continued feeling worse, I hurried to the bathroom and overdosed on vitamin C, Pepto Bismol, and a few leftover Zofran. Oddly enough that regimen (most likely the Zofran) really kept it at bay for the rest of the day. I continued to feel tired and yucky, but "the flu" didn't actually arrive - until DH returned home, and then shortly thereafter it set in full force. Thankfully, the worst of it was over by late night, so I was able to get some exhausted sleep, and I'm now feeling much better, though still tired, achy, and mildly yucky. However, I am so thankful that the Lord permitted me to get through the day so that DH didn't have to take any more time off of work.

Now we are once again back in the waiting mode to see if either of the kids is going to come down with it. I am praying that the answer on that one will be no!!! We have not yet had to deal with stomach flu with the kidlets, and I'm not anxious to start.

So I once again had the chance to think through this whole pregnancy thing. "Remember? Pregnancy is just like this, my friend. Do you really want to consider putting yourself and your family through this nightmare again?" Of course, when I'm sick, the answer to that is "Fat chance!" Once I'm feeling better, it waffles back into an, "Oh, I don't know. We'll think about it." Sheesh. Talk about ridiculous vacillations.

But anyhow - have I mentioned how much I love Zofran? Morning sickness, stomach flu, crunchy ice cream topping - it's great for just about anything.

And so, in that spirit, I offer the following brief ode, which I penned last night before collapsing into bed. Great poetry it's not, but hey, I'm writing about a drug here. Don't expect literary greatness.

Oh, and in case anyone is wondering, "Ondansetron" is the drug name - "Zofran" is the brand name.

Ode to Zofran
(to the tune of "America")

My gratitude for Zofran lies
On on-so-many planes
The morning sickness gently fades
The nausea it wanes

Ondansetron, Ondansetron!
I thank my God for thee
May my supply
Not once run dry
This is my heartfelt plea!

Enough said. And now I am off to nap!

Monday, August 2, 2010

Preschool: The First Day in Review

Today was the first day of preschool for our 4yo - sort of, at least - as I said, it's not the "true" preschool but a sort of "half preschool" - it's a 45 minute "athletic" version. Very neat.

The result? Mixed.

Since I could wait outside and he could see me, we avoided drop-off hysterics (though he told me that he cried anyway, though I didn't see it). However, from what I could see, he was only marginally involved or not involved at all - he would just stand off to the side watching the group do things.

This is not new - it's been going on for about three years. Our son loves being involved with adults and older kids, but with his peers he is completely disinterested. It's come up as an issue with at least two Sunday School teachers.

How to deal with it? I don't know. It will either get better with time, or it won't. If we do change our minds and decide to homeschool, having cross-age classes and get-togethers will be one of the big pluses.


The next four months will be our testing ground. Here is my plan:

I will be:

(1) Taking DS to preschool (pre-preschool for 1 month and real preschool for 2-3 months) and observing the issues I mentioned earlier - do we see good results in him, do we see good results in our family, are we dealing with constant illness, how does it fit all of us.

(2) I will be reading and doing my homework on the homeschool side of things as well - I have reserved a bunch of homeschool books at the library and am going to go on a reading spree.

(3) I will be making this issue (school v. homeschool) a matter of constant prayer.

Hopefully, then, by the New Year I should be able to make a final decision that I can have peace with, and stop eternally flip-flopping back and forth.

In other news, the stomach flu caught DH last night, so he is recovering and we are waiting with baited breath to see if he was the one and only victim, or only the first. Hopefully it's the former rather than the latter!

Happy Monday, all!