The best $40 I ever spent

Sorry it's been awhile.

The boys have been sick.

It started with Andrew. We noticed some red, blistery spots on his hands last Saturday. I immediately thought of hand, foot, and mouth disease. First of all, this is not hoof and mouth disease. It is simply a virus. Many people have not heard of it. But here is a brief description:

HFMD usually affects infants and children, and is quite common. It is moderately contagious and is spread through direct contact with the mucus, saliva, or feces of an infected person. It typically occurs in small epidemics in nursery schools or kindergartens, usually during the summer and autumn months. The usual incubation period is 3–7 days.

It is basically known for painful blisters on the hands, feet, mouth, and tongue. A fever is usually present, and b/c of the mouth/tongue blisters, the child doesn't want to eat.

Thankfully, Andrew's *only* symptom was the blisters. He had some on his hands, feet, bottom, and a couple in his mouth. He never got a fever, he never had trouble eating (no more than usual), and he never even seemed to feel bad at ALL.

So all day Saturday and Sunday, we kept the boys separated (which is hard) to try and prevent Benjamin from getting it. It is not an air-borne illness, so contact was the key.

However, a few hours after he'd been asleep on Sunday night, Benjamin woke up crying. I think it was 12:30.

And you moms know, when your child who never wakes up in the middle of the night, wakes up, he/she is sick.

And you have to gear yourself up for your Mommy Duty.

Well, when I went to check on him, there really didn't seem to be anything wrong with him. I held him for awhile and he went back to sleep.

Until 4:30.

When he woke up screaming. And burning up with a fever.

The next day wasn't really that bad. I saw a few light spots on his bottom, but no huge blisters. And he wasn't especially irritable. I called and spoke with the doctor. She confirmed that it was most likely HFM, and told me to just try and keep them comfortable. They are no longer contagious when they've been fever free for 24 hours. (And since Andrew never developed a fever, he was fine, even though he still has a few fading blisters.)

At this point, I assumed Benjamin just had a mild case like his brother.

I continued to give him Tylenol and Motrin to keep his fever down and any discomfort at bay.

That night (Monday) was uneventful, as was Tuesday. He didn't feel great, and certainly wasn't his usual chipper and smiley self, but nothing big.

Then Tuesday night came.

Oh my goodness, y'all.

Even with two newborns, I have never been up so much at night.

I've never had to go up and down the stairs so much.

To hold one of my babies that much.

To try so hard to bring comfort when there wasn't really much I could do.

Between 11:30 and 6:30, he woke up every 30 to 60 minutes. I think I went up there eight or nine times. He would just be sitting there in his crib, crying. In pain. Hot with fever. I would hold him, sing with him, pray for him, rock him in the chair, give him medicine when I could. Get him back to sleep.

Then he'd wake up again. And I would groan, throw back the covers, and trudge up 16 stairs. At one point, at about 6 a.m., after I got him back to sleep and left his room, I just curled up in a ball right outside his room (at the top of the stairs) on the carpet and passed out. I just couldn't do the stairs again...going back to bed, getting my hopes up that I was going to get some sleep.

By 6:30 he was up for the day. Matthew got the boys up, as usual, and when he brought them downstairs to me, he asked me if I had seen the blisters on B's tongue.

I hadn't. It had been dark. I was half awake.

But there they were. Horrible. White. Covering a great deal of his tongue. Obviously painful.

Poor, poor baby of mine.

There was only so much pain medicine could do for us yesterday. It was hard for him to eat, and he was so clingy. Both my boys have always done well playing independently. So for me to have to hold him and walk around with him most of the day was hard for me. Especially when I had things to do. You know, like eat and pee.

I called his wonderful doctor as soon as they opened at 9:00 and asked her what I could do to help his mouth. I had read online and heard from friends that there is a mixture of Benedryl and Maalox you can coat their mouth with (or have them drink) to help with the blisters. But the doctor had something better for us.

Magic Mouthwash

It's a prescription, and it's a compound. We're familiar with compounds. You can only get them at certain pharmacies (Kingwood, for you local folks) b/c they have to make them there on site. One of Benjamin's heart medications was a compound. So we knew that insurance does not cover them.

Matthew left early from work so he could pick up the MM from Kingwood. It was just shy of $40. But at this point, I didn't care. I had heard back from some of my Facebook peeps that the MM worked wonders.

So when B woke up early from his nap, I gave him a dose. It's supposed to be 1 tsp four times a day. It said it might cause drowsiness. I was hoping it would help to not only ease his mouth discomfort but maybe even help him to go back to sleep.

No dice.

The next two or three hours, he was SO clingy and SO fussy. Thankfully, my mom came and got Andrew when he woke up from his nap and put him to bed at her house, so I was able to focus on Benjamin. Even though after my horrible night and only a 45-minute nap (for me) and no shower, I didn't really want to take care of Benjamin anymore. LOL

So Matthew watched him and fed him dinner while I took a shower and got a break.

Benjamin got a nice bath and then we went upstairs to take him to bed.

It was time for another dose of the MM. And as I gave it to him, I realized my mistake from earlier. The instructions said 1 tsp. I had measured to the 1 on the syringe that came with the MM and gave it to him.

Yeah.

The wrong side of the syringe.

I had given him 1 mL, not 1 tsp. (A tsp equals 5 mL.)

No wonder it hadn't helped. I had only give him 1/5 of what he needed.

I'm just thankful that I realized it before bed. Because if we had had a repeat of the previous night because I misread the syringe, I would have been so mad at myself!

After we put him to bed, we ate a yummy dinner of poppyseed chicken casserole and rice, steamed broccoli, and crescent rolls. (Matthew watched B while I cooked, and I was so glad b/c the food was definitely something I needed!) Then I drove less than ten minutes to my younger brother's house to watch the season four premiere of Friday Night Lights. It's only available to DirecTV subscribers, and he has DirecTV! So now I don't have to wait until NBC airs the episodes next summer. It was a great break, and wonderful to be able to watch Coach Taylor FNL again! On the way home from Justin's, I stopped off at Mom's and got Andrew so he could finish out the night at our house. He's so sweet when he's asleep. LOL

I got into bed at about 11:30, not sure how the night was going to go.

But like the title of this really long, rambling post says, buying that MM was the best $40 I have ever spent.

Benjamin slept all night, waking up at his normal 6:20, and I got a luxurious seven hours of sleep.

Today he's not better. Not by a long shot. He's still eating poorly, the blisters still look horribly painful, and he's fussy and clingy.

But I've had more sleep, and I know we're on the way out of the woods.

I kept Andrew home from preschool on Tuesday just in case, but today was one of only two field trips this year, so Matthew was able to take the morning off and take him. (They're going to the Rock City Enchanted Corn Maze.) Andrew will still be able to go trick-or-treating on Saturday, and it won't matter if Benjamin can or not.

I'm just glad this is not an illness that Matthew or I can get! And when Benjamin got sick, it was almost a relief from the perspective that we no longer had to keep the boys apart.

I went back to the doctor on Tuesday for my 17-week check up. The baby looks great. Nice, strong heartbeat, and all the measurements are right on track. (He turned the screen away when he measured the femur so I wouldn't catch a peek of the gender, or lack thereof!)

My amnio is next Tuesday, so I will update more about the baby later!

Now it's time to try and get Benjamin to eat lunch. Fun, fun.

Swallow study = good

Sorry for the delay: Andrew's swallow study went fine. He ate the foods well and passed w/flying colors. They said all looked normal. So I talked to his pediatrician and she said that it's probably a combination of small mouth/throat vs large tonsils. We're going to wait until summer and see an ENT about removing the tonsils. Meanwhile, we're giving him soft foods in small portions.

More later about other things...just busy right now w/laundry and dishes. You know, the usual. :)

Really, just not much to say

I haven't been neglecting blogging for any particular reason.

I just don't have anything to say, really.

Things here are pretty normal. Except that Andrew is going for a swallow study tomorrow. Yes, you read that right. It says "Andrew," not "Benjamin." He's always been a picky and slow eater, but it's gotten really bad lately. He just chews food and holds it and sometimes complains that it won't go down his throat. His pediatrician sounded concerned, so we went to see her last week. She said his tonsils weren't exceptionally large, but that she wanted him to see an ENT doctor, but she wanted him to have a swallow study done first.

For those of you who aren't familiar with a swallow study, here's the gist. You take the child in hungry. (His appt is at 1:00 p.m., so he can eat a light breakfast but that's all.) They coat several foods (banana, cookie, applesauce) and some liquids (thin and thick consistencies) with barium. (Thankfully, they can also add flavoring to it, something we never had to do w/Benjamin, but will most likely be necessary w/Andrew.) Then they have the child eat each food and drink each drink while they take a video x-ray of the entire process. The barium shows up nicely on the x-ray, and they are able to determine if the food and liquids go where they're supposed to go, and if the child has any abnormalities swallowing.

Because of the x-ray part, Matthew is having to take Andrew, since x-rays and pregnancy don't bode well together.

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Hmmm....what else?

Oh, we have some ants in our kitchen. Not many, so far, and the exterminator is coming tomorrow. At least it's keeping the cats entertained.

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OH! Benjamin has started to sign a little bit. We've been working. And working. And working on sign language for many months. Mainly just the basics. So the other day, actually while the boys and I were waiting for the doctor to see Andrew, I gave Benjamin some Cheerios (Multigrain, his favorite) in his stroller snack tray. When he finished them, he looked up at me, put his chubby little fingers together, and made the sign for "more."

I might have cried.

And then I called Matthew, and he might have cried.

See, when you have a delayed child, it worries you when things are delayed even when you know they're going to be delayed. Some children w/DS don't talk until they're three or four. Or six or seven. Or never. Seriously. This is my possible reality now.

But now he's started to communicate. Even if it's just a little bit.

It gives us hope.

Plus, he's just so dang cute when he does it.

Now we're working on "all finished," which he's done a few times, but not when he's really finished.

Oh, well, it's a start.

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Oops. Guess I did have some things to say.

:)

My advice to someone who just got a diagnosis of DS for their child

Through Facebook, I found the blog of a family who just found out, via amniocentesis, that their fourth child has Down syndrome.

Needless to say, their lives have now completely changed, and they are trying to come to grips with it.

I left him (the dad is the one writing) a comment, and after I hit "publish," I decided to post it over here on my blog.

I figure I've been on a little bloggy break anyway, and this is fresh material. LOL

But I really hope it might help someone else. You never know.

We all deal with these things differently.

Here is how I deal.

The blog address, in case you'd like to stop by: http://thehaganxp.wordpress.com/

My response to his post about being devastated, angry, and numb:

Okay, seriously? This sucks. I’ve been there. Except we found out about an hour after our second son was born. We don’t find out the sex of our babies either, so we were looking forward to finding out if we were going to be bringing home a Benjamin or a Katherine. Never dreaming that we’d bring home a life that we never, ever thought would happen to us.

He is now 18 months old. So it’s still fairly new.

Everyone here who has commented has good intentions. I remember getting the same kind of encouragement. I remember not wanting to read another blasted book about DS b/c all it did was depress me. I remember not wanting to hear about another child’s accomplishment b/c even though it was great for that child and for that parent, it was still a delay, and that was not what I wanted for my son.

I remember everyone telling me that I would one day be okay with this. That I would even (GASP) think of it as a blessing.

No. Freaking. Way.

But you know what?

They’re right.

You can’t see it now. God knows if you could, you’d be some sort of superhuman. You have to go through this process of mourning and just being sick about it (not everyone does, but most of us did) and thinking that you’ll never look at your child or think of your life without hearing/seeing “downsyndromedownsyndromedownsyndrome.” It’s all those months and months and, dare I say, years, of coming to grips with it that forms the new you.

Because I don’t know a single parent of a child w/DS who doesn’t eventually think it’s the greatest thing that ever could have happened.

EVEN THOUGH AT TIMES WE HATE THE DIAGNOSIS.

And even though I never, ever, ever thought I would say it. It almost shames me to say it simply b/c I am having to eat my own words.

I am not a bumper-sticker mom. I don’t chastise people for saying things that are politically incorrect. I haven’t even been on a Buddy Walk. I’m still, 18 months later, coming to grips with all of this.

And even though you may think you never will, you just can’t help yourself.

It’s like a club you never wanted to join, but once you unwillingly do, you realize that life is different here and that we all get to be a part of something that no one else truly gets.

Give yourself time. You don’t have to read the books now. You don’t have to read all the blogs. Please don’t Google every possible birth defect. You’ll go nuts.

Just be.

Mourn.

Smile when you can.

Embrace the fact that this is now your reality but it won’t always be.

We’ll be here for you when you have questions or want to cry or scream or just talk. There is always someone who is farther along on this journey, and there is always someone who is not quite as far.

Above all, just be honest. It’s truly the only way to grow through this.

Quick update

Sorry for the temporary hiatus.

We are actually at the beach right now.

Last-minute decision. :)

I might have to make my blog private.

Or just stop it altogether and delete it all.

I don't want to make it private b/c I know as a blog reader that it's a pain to have to sign in to read a blog, and a lot of times it's not worth the hassle to me.

And I don't want to stop/delete it b/c I love it.

No one is threatening me.

I'm not in danger.

I just have a person I don't want to read it.

To read my words.

To read about our lives.

And most especially to see pictures of my precious boys. Especially my Benjamin. Whom she thinks would be better off if he wasn't even alive. Because you know, his life will amount to nothing. He'll never be able to run outside with other kids or play sports. He'll have a miserable life because we didn't pray for God's will when I was pregnant. Because God's will was for him to just die when I was pregnant with him. Because we were selfish to have him because we wanted what WE wanted and not what was best for him. (I hope you can sense my dripping sarcasm and utter disgust here.)

Okay. I just made my decision.

I am not making my blog private.

I am not deleting it.

I don't even know if my mother-in-law knows I have a blog. But I know she's on Facebook. But she cannot find me because I blocked her. But I refuse to hide my blog. If she is reading this then let her. She can't do anything about it.

It is her loss.

I don't know a single soul sweeter than my son. And it is her loss.

October 3--One year later

**WARNING--Some of these pictures are graphic**

Benjamin is growing and developing great these days. Physically, he's able to do quite a bit. I'm amazed at how well he is doing.

Sometimes life does seem just like a day in the park.





Of course, one year ago today, on October 3, 2008, things were not at all gleeful.

At 7:30 a.m., I handed him over to the nurses at Vanderbilt Children's Hospital.



And he had his heart fixed.



It took my breath away to see this picture again.



And to think of how far we've come.

Sure, life isn't all a day in the park. Even when we're at the park, I see children Benjamin's age running around and going up and down stairs and down slides unassisted.

Even though that part isn't as hard as the fact that he's so terribly behind verbally.

And he always will be.

But you know what?

It's okay.

Even though as I'm typing this I have tears rolling down my cheeks because no matter how okay with it I am, it still saddens me, it's still okay.

I have so much to be thankful for.

I can hear Benjamin playing with his toys in his playpen in the next room.

I can hear loud banging and cars crashing upstairs in the bonus room where Andrew is.

I can see Matthew across the room working on the dishes from our dinner last night.

It is a beautiful, crisp autumn day.

God's mercies truly are new each morning. His love surely is all I need.

It's okay.

In fact, somedays, it's more than okay.

It's a day in the park.