Sick, sick kids

I may have spoken too soon.

We truly have not been healthy for over a month now.

Matthew was released from the hospital, and was almost back to normal, when he got yet another ear infection.  (Yes, we will be talking to an ENT about tubes soon.)  This infection was resistant to the first round of antibiotics, so the misery was prolonged until we started a second course.  Just today, he looked like he felt a little better … but we’ll see how the night goes.

Micah mostly recovered from his nasty cold, but had a dry cough that lingered and lingered for weeks … then got worse.  He started coughing more and more, then woke up from his nap yesterday with a fever of 103.  His pediatrician today diagnosed “Croup,” (better than pneumonia, which I was worried about!) and gave him a dose of a steroid.  We’re doing nebulizer treatments with him, too, which we haven’t had to do since he was a baby.  He’s still spiking fevers, and is pretty miserable, but we’re doing all we can for the little guy.

Jesse still has his “lingering cough,” too, but we’re doing our best to protect him from the croup virus.

Please say some prayers that this family can recover and be healthy again!

Babies don’t keep.

Song for a Fifth Child

by Ruth Hulburt Hamilton

Mother, oh Mother, come shake out your cloth,
Empty the dustpan, poison the moth,
Hang out the washing and butter the bread,
Sew on a button and make up a bed.
Where is the mother whose house is so shocking?
She’s up in the nursery, blissfully rocking.

Oh, I’ve grown shiftless as Little Boy Blue
(Lullaby, rockaby, lullaby loo).
Dishes are waiting and bills are past due
(Pat-a-cake, darling, and peek, peekaboo).
The shopping’s not done and there’s nothing for stew
And out in the yard there’s a hullabaloo
But I’m playing Kanga and this is my Roo.
Look! Aren’t her eyes the most wonderful hue?
(Lullaby, rockaby, lullaby loo).

The cleaning and scrubbing will wait till tomorrow,
For children grow up, as I’ve learned to my sorrow.
So quiet down, cobwebs. Dust go to sleep.
I’m rocking my baby and babies don’t keep.

My Jesse is growing up too quickly.

At 19 pounds, he is only 3 pounds away from catching our little 22-lb Matthew.

He can sit up.  He can push himself up to a sitting position.  He can crawl forward using just his arms – and is surprisingly quick.

He is getting up on “all fours,” even with his brace on.

He loves his “Johnny Jump Up.”

He is eating “real” food, and loving it.

And, he is 7 months old today.

Believe it or not, this is his “happy face.”

Whenever he gets really excited about something (especially food!), he bubbles with his lips.  It takes such concentration to do this, though, that the face is pretty priceless.

We love you more than you’ll ever know, Jesse.

3-21 World Down Syndrome Day

Happy “World Down Syndrome Day!”

Today’s date, 3/21, represents 3 copies of the 21st chromosome:  the genetic condition known as “trisomy 21,” or “Down syndrome.”  For more background information, or if you really don’t know much about the condition, I would recommend that you start with last year’s post.

This year, I would like to highlight two things.

1:

This is the new video produced by the National Down Syndrome Congress (NDSC) “We’re More Alike Than Different” Campaign.  These men and women are truly inspiring, and I wish I could meet all 4 of them!

2:   Reece’s Rainbow.

If you ever wanted to support Matthew financially, please consider making a donation to Reece’s Rainbow in his honor.

This is an organization that raises funds to help families adopt a child with Down syndrome.  Most of the adoptions are international, and can cost a family up to $30,000 – a huge barrier in the effort to give a child their “forever family.”  Most of the waiting children are in Russia or Eastern Europe, although there are children in need everywhere.  These children are living in orphanages, but will be placed in institutions once they reach a certain age – sometimes it is age 3, sometimes age 5.  Most children with Down syndrome die within their first year of institutionalization.

Reece’s Rainbow also funds humanitarian aid projects and educational/therapeutic opportunities aiming to improve the quality of life of these waiting children.  The organization also funds and facilitates the development of new Down syndrome birth parent support groups in foreign countries, with the goal of decreasing the number of children placed in orphanages.

Visit the Reece’s Rainbow website.  Browse through the pictures of beautiful children waiting to meet their forever families.  It will break your heart.  Many of the children already have a committed family, but just need more funds for their adoption grant.  There are many, many families eagerly waiting to welcome a little one with Down syndrome into their homes, but they just need a little help to make that possible.  You can make a donation to the general fund, which will go to where the need is greatest, or you can choose to sponsor a particular child or family.

Could you be a child’s forever family?

Could you help a child meet his forever family?

On the Up-Swing

Sometimes the challenge seems so very big …

Like a wall that just won’t budge … no matter how hard you push!

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But a brighter path is just around the corner …

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And, before you know it, you’re back in the swing of things …

I am happy to report that we are feeling much better.  Matthew is probably the healthiest of all, with renewed appetite and energy.  The rest of us still have a lingering cough, but are definitely on the up-swing.

Again, I was amazed by God’s graces … As usual, I was blessed with extra when my child was in the hospital – I had unexplainable extra energy and endurance; was wide-awake when I should have been exhausted, and had a very real sense of peace – Someone Else was in control, and my child was, and always is, in His hands. 

I also had lots of extra helping-hands to help take care of Micah and Jesse, meals, and even some yard work!  Thank-you to everyone who lent a hand, and everyone who lifted us up in prayer last week.

Home again

Matthew was discharged from the hospital this morning. He had a restful night, and was rehydrated, happy, and playful this morning. He is still having quite a bit of diarrhea, but we are able to keep him hydrated at home now.

The doctors discovered that he has rotavirus – a nasty bug that often causes severe vomiting and diarrhea in little ones. Most kids are vaccinated for it now, but the vaccine has to be given in the first months of life (2mo, 4mo, and 6mo) – it is not effective if given to older babies. Matthew didn’t get the vaccine because we didn’t vaccinate him when he was on Hospice. We caught up on all the other immunizations, but he was too old for rotavirus at that point. (The doctors didn’t know if his immune system could handle vaccines when he was so sick – there was a chance the vaccines could actually make him very, very ill! Besides – what’s the point of vaccinating a dying baby??)

The good news is that Micah and Jesse ARE vaccinated, so they will be safe from this one. Thank You, Thank You, Lord!!!

Now, we all just have to get rested up and recovered – we’re glad to have the weekend.  Many, many thanks to everyone who has helped out, and everyone who has been praying for us and supporting us through this.  I can’t tell you enough how much we appreciate it.

Back in the Hospital with Matthew

While we were on vacation last week, we all got sick – cough, sore throat, etc. Little Matthew was the worst of all, however – he had vomiting and diarrhea, too – to the point where he couldn’t keep anything down, was refusing to even try to eat, and becoming quite dehydrated.

So, yesterday afternoon found us in the ER, where they started an IV to give him fluids, gave him Zofran to treat the nausea, and did a chest X-ray. One doctor thought the chest X-ray looked like he may be starting to get pneumonia, so decided to admit him to the hospital for IV antibiotics, continued rehydration, and observation. The pediatrician who saw him didn’t think the chest X-ray showed anything to be too concerned about (but did comment that it was a little hard to read with all the wires holding his sternum together after surgery, and his enlarged heart) – but still thought it would be good to keep him for awhile to get him rehydrated.

I left last night around 10:00, and Aaron spent the night with him in the hospital.  When I left, he was finally sleeping, and looking like he was feeling a bit better.  However, I just talked to Aaron, and they had a really rough night.  Around 11:30, Matthew started crying, and wouldn’t stop or be consoled.  Several hours later, they found that his IV had infiltrated – was filling up his arm with fluid instead of his vein – which is incredibly painful.  So, they had to find a new IV site … and by the time it was all done, Matthew was angry, exhausted, and in pain.  He finally went back to sleep a couple hours ago, but Aaron and Matthew got very little sleep last night.

We don’t know how long they are going to want to keep Matthew there – we’ll know more after the doctor sees him this morning.  So, for now we’re trying to figure out how to juggle the logistics of 3 kids – one who is nursing and can’t be left – and one who needs Mommy or Daddy with him in the hospital … and Daddy needs some rest.  My parents are out of town this week visiting my sister and her new baby, otherwise they would take Micah or help us in the hospital.

I’ll post again when we know more, but for now please say a prayer for recovery and rest for all of us.  Thanks.

End the R-Word

Today is 3/3/2010 – the day set aside by the Special Olympics, Best Buddies International, and the special-needs community to “Spread the Word to End the Word.”

This is an ongoing campaign to raise the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using the R-word.  You can pledge your support at www.r-word.org.

Who’s with me?

I admit, there was a time when I would casually say, “that’s retarded,” but I had no idea how hurtful that word is.  Of course, we realize that most people don’t mean to hurt feelings or offend, but that’s why this campaign is important.  It IS hurtful, and it IS offensive.  Now, when someone says, “I’m such a retard …”  I hear “I’m such a Matthew.”  When someone says, “That’s so retarded …” I hear, “That’s so Matthew.”  When said in reference to something undesirable, it is an insult – to Matthew and the rest of the special needs community.

This topic is difficult for me to write about, because it is so wrought with emotion – every time I hear the “r-word” dropped in casual conversation, it cuts like a knife to my very core.  Please help me bring up my boys in a culture that doesn’t use this word – that doesn’t use my SON as a synonym for “stupid,” “undesirable,” etc.

So, spread the word to End the R-Word!  It’s simple – don’t use it yourself, and if you hear it used, simply say, “Hey – that’s really not o.k.  I know a beautiful little boy with Down syndrome, and it’s really offensive to say r___ like that.”  And, just for today – post it on your Facebook, Twitter, MySpace or whatever you use …

Please??

You can't say "no" to these eyes!

Help us spread the word!

Also – if this topic is important to you, check out the “Oz Squad” blog – it is a group of advocates for Ds committed to (nicely and tactfully) educating those that use the “R-word,” especially high-profile individuals, that it is hurtful, offensive, and wrong.  They periodically post “missions” when they need some help from our community to get the job done!

Thanks … from all of us.

Actor John C. McGinley (Scrubs) has a son with Down syndrome, and has actively supported this campaign for years: