Archive for May, 2010


As you know, Chloe has been sick this week — fever, doctor, seizure, ER, virus, etc.  Anytime Chloe gets sick, it takes her a long time to recover.  A virus that would normally have a child down for a day or two gets Chloe down for a week.  Chloe got sick on Tuesday, and she’s still miserable.  Poor thing.

The doctor called today to say that her urine culture which was clear for the rapid test ended up growing bacteria.  She has a UTI (urinary tract infection).

A few things:

1.  I didn’t start her on the antibiotic that they prescribed since when we went to ER later that day, her blood test showed her white cells in perfectly normal range  — thus the “virus” diagnosis.  Since antibiotics don’t help viruses, I haven’t given it to her.  Now I learn that she indeed has an infection; she would be a lot better today if I had given her the medicine starting on Tuesday.  Ugh.  Bummer.  I’m sorry, Chloe.  But what’s a mom to do??

2.  It’s good to have an answer to why Chloe ended up with such a high fever (over 104) this week.  A UTI explains that.  Answers are good, no?

3.  But UTI diagnosis is a real bummer for Chloe.  She has a dysplastic right kidney and a neurogenic bladder.  (Explanation:  her right kidney never formed, and her bladder doesn’t work for some neurological reason.)  Her bladder hasn’t grown like a bladder should; thus, the plan has always been to eventually reconstruct it and make it bigger.  The hope has been for her to stay infection free so that she won’t have to have her right “kidney” removed — that way they can use the tissue from it for the reconstruction.  She hasn’t had a UTI in about 5 years — awesome!  But this UTI breaks our hearts a little bit.  Makes us concerned.  So the prayer is for this infection to heal quickly and cause no damage to her good kidney and for this to be the last infection for sure!

So . . .  we just started the antibiotic this afternoon.  Hopefully Chloe will feel a ton better in a day or so.

Another Hat

(This post has given me quite a headache.  The photos kept messing up my text and vice versa.  Finally one of my photos somehow was eaten up by another photo.  I give up . . . .  I’m publishing it as is!!)

We parents wear many hats, no?

We have our nurse hat, our chauffeur hat, our soccer mom hat, our teacher hat, our counselor hat, our volunteer hat, our homemaker hat, our encourager hat, etc. . . . you know what I’m talking about.

Well, on occasion, I also wear a seamstress hat.  LOL!  I can’t type that sentence with a straight face.  Me . . .  a seamstress!!  Ha!  That’s certainly stretching it.  But I do on occasion have to don my seamstress hat, get out my sewing machine, and get to work on something.

Chloe requires some custom-made items to make her life easier and more comfortable.

#1  Sometimes I just have to “rig” her pajamas.  Since she has the HORRIBLE habit of taking off her pjs and then taking off her diaper AND since she has NO CONTROL of urine or poop, I had to think of something.  The answer?  Zip-up footed pajamas worn backwards (so she can’t reach the zipper).  But for it to work comfortably, I have to cut off the feet of the pjs and cut the back of the neck into a little v-neck — after all, if you’ve got to be STUCK in pjs, it is much nicer if they’re not choking you all night.

#2  I make all her t-shirts into onesies.  Since Chloe’s bladder doesn’t work, she has a cutaneous vesicostomy, a small hole below her belly button where her urine drains.  I don’t have to cath her; the urine just goes right into her diaper.  That is IF her diaper is tall enough and stays put up where we need it.  She has to wear an adult size M diaper so that it is tall enough to catch her urine.  But also important is keeping the diaper up in place to cover the vesicostomy.  To accomplish this, I turn Chloe’s shirts into onesies.  Basically, I just cut the panty part off of onesies that are too small for Chloe and sew the panty part on a shirt that fits her.  Tada!  A onesie!

#3  My latest feat was altering onesies that no longer fit into onesies that do fit.  (I have photos of this one so maybe you’ll understand at least one of my seamstress products!)  In case you can’t figure it out from the photos alone, feel free to try to interpret and follow these very detailed and knowledgeable instructions:

First, gather some too-small onesies.  (see photo A)  Then, cut the too-small onesie into 3 parts:  the top, the middle, and the panty part.  (see photo B and C)  The top part goes in the trash.  The panty part will be used to sew onto this year’s t-shirts. Next, gather a few more too-small onesies and cut them in half (does NOT have to be exact).  (see photo D and E)  Next, grab a middle part that was cut earlier (refer back up to photo B and C) and sew it onto the panty part of the too-small onesie.  (see photo F)  Lastly, sew the top part onto the middle part, and the once-too-small onesie is ready to be worn again!  (see photo G) And the possibilities are endless. Very lastly, it is always helpful to have a helper close by incase you need help threading your sewing machine or running the material through the dealy.  (see photos H and I)

photo A

photo B

photo C

photo D

photo E

photo F

photo G

photo H

photo I

Sewing gives me quite a feeling of accomplishment.  What I make is NOT pretty, but it is useful and needed.  Usually when I complete a project, Chloe wears it that day or the next.  That’s how much she needs it.

It’s nice to feel useful now and then, isn’t it?

Well, what are you waiting on?  Tell me!  Tell me about one of the hats that you wear or about a way that you feel useful to your peeps.  🙂

Tuesday’s Drama

So you don’t ever get the idea that our life is boring . . .

Tuesday morning Chloe woke up with a fever of 103 something.  She felt awful and was pretty lethargic the whole day.

We went to the doc in the early afternoon; he thought maybe she had a sinus infection so prescribed an antibiotic.

About 1 1/2 hours after returning home, Chloe’s fever began to spike again.  With the spiking fever, Chloe had her biggest seizure yet.  It was certainly the most violent and the longest, lasting over 10 minutes.  It was pretty yucky to see.

I called 911.  The ambulance got here quickly and took us onto Cook Children’s Hospital.  We spent several hours there in ER running some tests and stuff.

Diagnosis:  a virus, a fever, a seizure.

We were sent home with meds to control seizing until she gets through this illness and we can get back in to see her neurologist.

Every thing’s fine.  She’s better today but still running a fever (more like 100-101 instead of 103 and 104!).  Chloe still feels yucky and doesn’t have much energy.  Being sick looks a little more pitiful on her since she has lost much of her ability to hold up her head.  She’ll be home for a couple of days.

Thanks for your prayers for her.  And we’d love more prayer for her quick healing of this virus and fever.

Could’ve . . . . Should’ve

My post and my reaction from yesterday could’ve been very different.  Maybe it should’ve been very different.  Below is my oh-so-feigned pleased response to homework on the last week of school:

This is the last week of school.  It will be a fun week, with celebrations of different kinds, a talent show on Wed, and noon dismissal for Thurs and Fri.

It never occurred to me to ask Zach about his homework yesterday.  I assumed he had no homework since usually teachers completely blow off the last week of school, wasting valuable learning time.  But at bedtime last night, Zachary suddenly remembered that he, indeed, had homework and that he hadn’t done it.

I gasped with surprise.

“You have homework on the last week of school?” I said with happy, surprised eyes.

“Yes, ma’am,” came Zach’s polite response.  (We ARE pretending here, aren’t we???)  “I even have my usual Friday tests on the last day of school:  spelling, math, and grammar.”

“You do?”  I asked, again surprised.  “Wow!  That is so wonderful that your teachers are not wasting any time and that they are expecting you to do your usual work.  Now, THAT’s why I send you to school.  Finally!  Teachers who take it as seriously as I do.”

Both boys were pleased and smiling, happy that their education would not be ignored even on this last week of school.

“Zach, come on, Honey.  Let’s get back out of bed and go do your homework.  It will be fun, and you will benefit greatly from it,” I said as Zachary and I skipped happily out to the living room to do his homework.

“Let’s also be sure to study my spelling words a few times, okay!?” Zachary added with a giddy grin across his face.

Yep, I could’ve responded like that. . . .   but I didn’t.  Not. at. all.

I am still displeased.

Not Me! Monday (on Tuesday)

Today I am NOT joining up with MckMama and other bloggers since they all did their Not Me! Monday on Monday.  Go figure.

But I do have some things to confess. . . . some things that I have surely NOT been doing:

At bedtime last night, when I first learned that Zachary had homework to do, I did not become very angry.  My anger was not directed at the 3rd grade teachers for giving homework on the last week of school!  The last week of school — when we have 3 full days of school on Mon, Tues, and Wed, ending with two half days on Thurs and Fri.  And grades were turned in last week!

Seriously!?  Come on!

You already know how I feel about homework.  Well, little did I know that I have even stronger feelings about homework on the last week of school.

I most certainly did not proceed to throw a little temper tantrum right there in front of my boys, telling them I was angry.  “That makes me so mad!” surely did not come out of my mouth several times during my little fit.  And my anger did not escalate to a higher level when Zach added that he has a spelling test, a math test, and a grammar test ON THE LAST DAY OF SCHOOL as if it’s just a regular ol day!!

My boys did not really enjoy — like really love! — watching Mom get angry at a teacher since they’ve never seen me do it before.  And they both did not take turns adding info or ideas or thoughts that they thought might make Mom madder and madder right there before their joyful eyes.

“On the last week of school!!” Zach added with passion and disgust, watching to see my reaction.

“Are you gonna tell the teacher how you feel?!” Elliot asked hopefully.  “Please tell me what she says!!”

Each of their words added to my anger — and to their pleasure.

Surely, surely I did not then argue with Zach about whether he was going to complete his homework or not.  Please tell me that while my 9-year-old boy was saying “Yes!  I’m going to do it!  I don’t want to have to go to study hall to do it!  Yes, I’m doing it!” . . . . please tell me that I was not the one saying, “No way!  We are not doing it!  That’s ridiculous!  No.  We aren’t doing it!  This is the last week of school!”

<clears throat>

I would never behave like that — especially in front of my children!  Would I?

Sheesh.  Ever blank out and blitz out and behave like a child in front of your children, being a totally horrible example for them?

Yeah, me too.

A Quick Check-up

Today Zachary had an appointment with his psychiatrist.  She writes all the prescriptions for Zach’s medicines for anxiety and ADHD and mood disorder; we visit her every 3 months to get prescriptions and to make sure she doesn’t need to change anything.  The visits include getting behavior / anxiety updates from me, finding out how Zach thinks he’s been doing, and then talking about meds.

Today my report was that he is getting angry — really angry — but is controlling it so that he isn’t hurting someone or destroying the room he’s in.  That’s a big improvement.  But his concentration, his listening, and his compliance are the big issues right now.

I did have to admit that I haven’t been giving Zach his afternoon dose of his ADHD med.  It is a hard one to work into a daily schedule for me.  I finally started setting a little alarm clock to go off everyday at 4, and that worked for nearly a week.  But the first day Chloe heard it buzz, buzz, buzzing, she grabbed it and took off with it. I hadn’t seen the little alarm clock since that day, but I found it this weekend!  My plan is to set the alarm clock to go off everyday again, but this time I’ll stick it up on top of the fridge or something.

When asked if he obeys his parents, Zach looked at me as he replied a little hesitantly, “Not really.”

At least he’s telling the truth.

The doc really got onto him during the visit because Zippy asked me a question and wasn’t pleased with my answer.  He mouthed and questioned my decision.  The psychiatrist gave him a pretty stern lecture about obedience and respect.  I love it when my kids hear another person in authority say the same ol thing that mom’s been saying for years.  It was hard not to look at Zach with an I-told-you-so smirk!

I don’t think we have ever gone to see the psychiatrist that she didn’t end up in total laughter at something Zippy said.

Today she asked him, “Who makes you so angry?”

“Elliot,” was Zach’s answer.

She asked him to tell her an example of a time when Elliot really made him angry.  He told her the story of a couple of days ago when Elliot bonked him with his new inflatable toy mace.  “He knew I had a cup of Froot Loops in my hands!!!  And he made me spill it!  He made me spill my Froot Loops!”

She didn’t need more details.  She didn’t have any deep pulling-your-thoughts-and-feelings-out questions.  She just died laughing.

“Froot Loops!!??” she asked through her laughter.  “Of course, . . .   food.”

As she wrote on her clipboard, she laughed and shook her head. “Couldn’t you just have gotten more Froot Loops from the box instead of getting so angry?” she asked, still smiling.

Of course, no amount of discussion or reasoning can help Zippy see straight when food is at all involved.  Food is his thing.

She continued to ask Zach and me questions.  And she finally mentioned Zach’s fidgeting and watching the clock.  “You sure seem in a hurry to leave from here.  Where in the world are you headed after this?”

“Subway,” answered Zach.

And with that, the laughter broke out again.

Glad we can so easily spread so much joy.  😉


The Top 14 Reasons Why I’ve Been Slacking on My Blog:

#14-  Paul is home in the evenings now — that’s when I normally write my blog.

#13-  May / End of school stuff is busy and stressful!

#12-  Chloe has been needy since her botox therapy.

#11-  Zippy’s homework — still!!  Come on, now!  Let’s stop already!

#10-  My garage sale with friends!

#9-   Elliot’s school and AWANA projects!

#8-   Rearranging Chloe’s room and going through her toys and clothes.

#7-   Doctor appointments.

#6-   Rearranging the toy room and going through toys.

#5-  I think someone has sped up all my clocks so my days are way shorter than they used to be!

#4-   An exciting employment move that’s been very consuming.  (more on that later!)

#3-   Cleaning and cooking!

#2-   Beginning work on moving Zippy to the toy room which will become his room in June.

#1-   Laundry!!!

Not Me! Monday

Today I’m joining MckMama and lots of other bloggers in Not Me! Monday, where we are confessing many things that we absolutely did not do this week!  (Of course we didn’t!)  You can click on over to her blog to see what other bloggers have not been doing!

Here are a few things I have not been doing:

I did not begin a photo tribute to my children last week (or was that the week before!!??) and stop after only two of them.  No Way!! That would be inexcusable!  No amount of stress or stuff or busyness could stop a good mom from posting a cute photo of all three of her children.  I would not have stopped in the middle like that.  Nope.  Not me!

Also in the busyness of life, I did not completely forget that I had a meeting at the church last Monday.  And I certainly did not drive 40 or so minutes out of town for a different meeting which I was thoroughly enjoying while my friends at church were calling every phone number they had for me, wondering where in the world I was.  When I got their messages later in the day, I was not really glad they didn’t know that I was sitting across town enjoying STARBUCKS at my other meeting!!  No way!  Not me!

And I have not been whining to everyone who will listen that this end-of-school season drives me nuts and stresses me out.  I have not complained multiple times about how busy we are.  And I’m not noticeably rejoicing each time we go to the last this or the final that of the year.  Nope.  Not me.

I did not choose to forego last week’s Not Me! Monday just because I wasn’t ready to admit my terrible mistake of missing that morning meeting.  Nope.  I was not totally beaten up about it.

So, anything you’re ready to talk about or ‘fess up to?


Last Wednesday Chloe had anal botox done for the second time.  We chose this procedure because of her constipation and her “mega bowel” and her low-functioning sphincter muscle.  Hopefully the botox will bring some function to her muscle and allow her to empty her bowel on her own.  We will continue with large doses of Miralax and other laxatives while her bowel is trying to contract and shrink back to a more normal size.  This is a procedure that often has to be done more than once.  We will more than likely repeat this procedure a couple of more times before possibly resorting to a surgery option.

At the same time she received the anal botox, she also received nine botox injections in her neck.  Nine!  Botox in this situation is used for the muscles in Chloe’s neck that have become very tight.  She is unable to hold her head up straight; instead, her tight muscles on the right side of her neck pull her head in that direction while also twisting her gaze to the left. Her right shoulder is also raised by the tightness of the muscles.  The idea is for the botox to relax those muscles so that we can do some intensive stretching and strengthening in her neck and have it all worked out and strong by the time the botox wears off — 3 or 4 months.  Chloe really depends on the tightness of her neck for stability; the muscles on the right are unusually tight and the muscles on the left are very weak because they stay elongated (stretched out) and she doesn’t use them.  The purpose of the physical therapy will be to lengthen the tight muscles and to strengthen the weak muscles.

The botox won’t totally take effect for a few more days so we are watching and waiting to see what her body will actually do.  Two of the biggest side effects include losing the ability to hold her head up for 3 or 4 months and losing the ability to swallow for 3 to 4 months.  While these sound really yucky, it will all be temporary — and it won’t stop us from doing the intensive therapy that will help her in the long run.  So far, there is no sign of her losing any swallow function.

Since receiving the botox she is already losing some control of her head and neck as the botox is beginning its work.  Since she doesn’t have the stability of the tight right muscles and she doesn’t have the strength in the muscles on the left, her head is getting pretty floppy, pulling back quickly or flopping to either side.  When she’s tired at the end of the day, she cannot even sit up because her head is too heavy.  All of this, of course, affects her walking, too.  It’s pretty pitiful to watch so I am hoping it doesn’t get much worse.

If you think about it, we’d love prayers for Chloe and for the success of this plan!

May 14, 2001

Nine years ago today, a woman went into premature labor.  She was very surprised.  Not surprised that the baby was coming so early, but surprised that she was carrying a baby at all.

You see, the woman was in a bad place.  She was in a bad season.  She felt out of control of her life and couldn’t find solid ground on which to stand.

She gave birth to a baby that day.  It was a boy, and he was 11 weeks premature.  His lungs were not quite ready to breath air on their own so he was put on a ventilator.  He was cocaine positive at birth and immediately started to have nasty withdrawals from a nasty drug.  The baby experienced an intracranial hemorrhage  at birth — much like a stroke.  He was left with brain damage on both sides of his brain.  Four pounds, brain damaged, hooked on cocaine, and not able to breathe on his own, Baby Boy G struggled for his life.

The woman, shocked and overwhelmed, never asked to see the baby and left the hospital as soon as she was well enough to walk off the premises.  She went back home where no one was even aware of the pregnancy or the delivery.

But she did talk to a social worker and began the process of lining up an adoption for the baby boy.  She knew she could not take this baby home into the life she was currently living.  She had to do something different for the baby.  She painfully began talking to an adoption agency.

Nine years ago today, across the state, a family yearned to adopt a baby.  The couple had a 20-month-old son and were pregnant with a little girl.  But God had placed a willingness and a desire in their hearts to adopt.  They were ready and eager to bring their baby home.

But the couple across the state wouldn’t learn of Baby Boy G for three more weeks.  They prayed everyday for the baby and for the birth-lady.  But they didn’t know the baby had already been born.  They didn’t know he was struggling for his life.  They didn’t know that he was being cared for by nurses and doctors and loved on by a foster mom in a hospital 2 1/2 hours from their home.

Thankfully, Baby Boy G was a fighter.  He pushed through his withdrawals, he gained release from the ventilator, he put on some weight, and he was ready to leave the hospital three and a half weeks later.  He was ready to go home.

That baby boy was later named Zachary.  He was our baby.  We immediately fell in love with his tiny, imperfect body — in fact, we thought he was perfect!

And we still think so!

We brought him home when he was three and a half weeks old and introduced him to his big brother, Elliot, who was still a baby himself.

Our lives, our family would be so incomplete without Zachary.  God designed him for us and us for him.  We are a family, and we’re super glad about it!

So today, I wish the happiest of birthdays to Zach —  I cannot believe you are already nine!!  You are so big and so smart.  You are kind and funny.  You are as strong as strong can be.  I am amazed at you.  And I am proud of you!  You have accomplished much.  And I know you will accomplish much, much more!  You are an awesome kid, and I like you very much.  And I love you!  I love you more than I can even begin to express.  Happy, happy birthday, Zippy!

And guess what, Zip?  I hate to tell you this, but the countdown to your birthday is back up to 365 days!!  Stink.

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