Tuesday, November 29, 2011

Explaining nursing...

I have a major tendency to need to explain myself, even when it's not necessary.

So, here goes... Nursing. We get 46 hours a week. We choose to use 5-8 hour nights to sleep (and a 5-6 hour day shift). Now to understand why we use it that way, you must know how much I need sleep. I don't do well on little sleep. At all.

When you have a trached child, you get a few choices. Sleep in the same room as the child, rely on a monitor, or have a nurse. I will not rely on a monitor. I can't rely on power to not go out, and not hear his monitor (his monitor has a battery backup). So, when we don't have a nurse, Travis and I sleep on his floor. I live in fear that if it were just one of us, we might not hear his monitor, so we both stay in there. It's really an irrational fear, but if you're kids' life depended on it, you might be irrational too.

This week has reminded me why... even though I sometimes can't stand our nurses, I need it. We had Micah 4 of the last 7 nights. Two nights ago, between 11pm and 6am, I was woke up... maybe 6 times? The feeding pump malfunctioned, and had to be reset. Feeding pump needed refilled (so did his humidity, but in my tired stupor, I forgot) Feeding pump needed shut off. Pulse ox alarmed. Pulse ox malfunctioned. Micah kicked me from his crib. Last night was a little better. I think Travis was up once, and I was up 2 times. Little punk decided to toss and turn from 4:45am on= very little sleep. He sleeps so much better when we're not in there.. probably because he can't hear Travis snoring!

In an ideal night, I get up at about 1:30am and 5:30am. That's if nothing beeps, nothing malfunctions, he doesn't need suctioned, and he stays asleep. (Read: this very rarely happens).

So, yeah. Nursing. Maybe someday Micah will be able to sleep without being attached at the foot, neck and belly. Until then...

Friday, November 25, 2011

Interacting with special needs families 101

(A large group of people including myself put our suggestion in, and this is what came of it. Hopefully it's helpful and it's meant to be shared, so feel free!)

Top 10 Manners for Interacting With Children of Special Needs and Their Families
By Julie Schenk Leach

I was asked to write this list for the MOPS group I'm a part of. It was included in a packet about manners and etiquette for children in various situations. I'm all about taking the fear out of interactions with my child, so I whole-heartedly agreed!

I didn't want the list to just be based on our personal opinions, though. I checked around on the internet and got a few ideas, but most of my research came as a result of a poll of a special needs group I have joined. I asked them what they would like to tell people to do or not do when dealing with their special needs child and his or her family. Let me tell you, the response was overwhelming! 50+ people responded with multiple suggestions. This is obviously a hot topic for special needs families and one that definitely needs to be addressed.

Therefore, I decided to also post the Top 10 list on here. I hope that it helps you know how to teach your children how to interact with special needs children.

Again, these are not solely my opinions. This is a compilation of suggestions from the families of children with a variety of special needs. We hope that you will take these thoughts into consideration the next time you encounter one of our wonderful children!!

Top 10 Manners for Interacting With Children of Special Needs and Their Families

1. It’s okay to ask questions. Children ask questions. That’s part of the learning process. Shushing your child if he or she asks questions about a special needs child suggests that the special needs child is something to be ashamed of. Instead, openly answer your child in a loving, gentle way that he or she can understand. If possible, try to link the child’s physical or mental disability to something your child already knows. If you aren’t sure about something and are close enough to the special needs family for them to hear your conversation, ask them to explain the machines or disability. Most parents would rather you ask about their child directly than avoid him or her. Plus, special needs parents are used to sharing about their child and will probably do a good job of explaining it in a way that your child can understand.

2. Be Tactful With Your Questions. Asking “What’s wrong with him?” is insulting to families who see their children as wonderful just the way they are. Instead, encourage your child to ask, “Why does she have to be in a wheelchair?” or “What is that machine for?” or "What's her story?" Of course, also help your child know when he or she has asked too many questions and is now just inconveniencing the family!

3. Staring is Embarrassing. When you see a special needs child out in public, turn your child’s staring into a teachable moment. Special needs families are probably used to staring, but that doesn’t mean that they enjoy it! Remember that special needs families are trying to live their lives just like you and don’t want to have to constantly feel “different.” Discuss with your child how he or she would feel if people stared at your family like that. Talk about how staring, even “sneaky staring,” makes people feel different and ashamed. Instead, encourage your child to smile, wave, and say “Hi!”

4. Start up a Conversation. As much as possible, children should speak to special needs children the same way they would speak to their own brother or sister (or maybe a little nicer!) :) While they may need to speak slower or repeat themselves (depending on the disability), it’s important that your child realize that special needs kids like to interact with other kids too! Often, these kids feel very isolated from their peers and they would welcome a friendly face.

5. Avoid Assumptions About Intelligence. Teach your child that a physical disability does not always equal a mental disability. Kids in wheelchairs or with physical deformities can often perform on the same academic level as peers, but are often treated by others as if they have learning disabilities.

6. Hands Off! Don’t touch a special needs child (especially the hands!) without permission from his or her parent. Often, kids with special needs have compromised immune systems that make them more susceptible to illnesses than other kids. Likewise, make sure sick children keep a safe distance from special needs children when possible. In addition, some children with sensory issues may not respond well to being touched by strangers. This could cause an episode that will draw even more unwanted attention to the special needs child. Take the cue from the parent, but err on the side of caution with this one.

7. Encourage Them to Find Common Ground. No two people are alike, but everyone has something in common. Regardless of differences, it's important to encourage children to look for things that they can relate to in others. Do both students adore the classroom hamster? Are both great basketball players? Finding common ground builds character and strengthens interactions between children.

8. Avoid Using the Term “Normal.” What’s normal, anyway?! The standard of “normal” changes depending on who you’re talking to, and I would venture to say that most of us would be out of the range of “normal” in at least one category! Using this term sends the message to kids that special needs kids are weird, or that there is something bad about them. Instead, use words like “typical” or the phrase “typically developing.” One mom says she likes, “radically distinctive!”

9. Be Conscious of Your Facial Expressions. Help your child to be aware of his or her facial expressions toward special needs children. You have no idea how many looks of disgust we have gotten, and that is hurtful to families who love their children unconditionally.

10. Don’t Show Pity. It is sometimes very difficult to see a child with major medical problems, but showing pity or saying, “I’m so sorry” sends a message to your child that this is a bad situation or something for which to apologize. For special needs families, they are just thankful to have their children and are doing their best to give them a fulfilling life. These families have fought through the hard times and are stronger for it, so take a cue from them and celebrate the small victories!

Thursday, November 24, 2011

Thanksgiving fun!

Thanksgiving Thankful Thursday

This thanksgiving brings plenty to be thankful for.

For health, maybe not your "typical" health, but health.

For Micah, who has been through a lot and still has a wonderful wild, crazy spirit.

For Travis, who puts up with me (not very easy) and loves me no matter what.

For my parents who are willing to rearrange the schedules to accomodate babysitting Micah, since they're our only options (not that they'd ever say they'd mind)

For my in-laws, who I can hardly call in-laws since it's not the most positive term. Most people can't say they love their in laws. :)

For the blessing of raising little Micah, and how he is a joy to so many of you guys. We appreciate all the people that love him, even if you hardly know him. It's overwhelming sometimes to sit back and think about all the people that care so much about him, even if you've never met him or only met him once or twice.

I'm so thankful for our Cincinnati second family. They take wonderful care of us, and we couldn't ask for more. They make this road so much easier than it could be. (We're also thankful we haven't had to see them for awhile! It's a catch 22!)

And sadly, today brings about the 10th anniversary of my grandma not being with us. I can't believe it's been 10 years. I just wish she could have lived long enough to meet Micah.

Saturday, November 19, 2011

Happy two years home, buddy.

It's probably hard to understand, but I'm so emotional on this day every year. I think back and realize how much time has passed between his second birthday and today, and it feels like FOREVER. I really can't believe I ever made it through that. He was in the hospital 80 days. To some of you that's nothing, and I'm sure some of you can't imagine it. I can't imagine doing it again.

He's come so far.

OH I'm so excited, I finally got this up. Lizziey B, this was supposed to be a little birthday present from Micah, but couldn't get this uploaded. All the rest of you can enjoy it too. Who doesn't love Green Eggs and Ham. :)

Friday, November 18, 2011

He may not look like me, but he certainly acts like me.

He's still asleep (its 8:3o). Which is exactly what I'd be doing if given the choice. :)

I usually wake him up at 8 if he's still sleeping (he normally gets up at 7:15)... but there's no time for a nap today. He has physical therapy at naptime, and by the time he calms down after that it's usually too late for a nap. So, we'll make the bet and let him sleep now.

Thursday, November 17, 2011

After a combined 9 attempts between facebook and blogger, I finally got it up both places! Enjoy my silly son.

Thankful Thursday

1) For Micah sleeping in. Now, ask daddy if he's thankful for this when Micah won't go to sleep tonight, and he might disagree. We've got a busy (boring busy, not fun busy) day so it won't hurt.
2) For my special needs mom's group. Love them, love the fact that I can say all sorts of complicated stuff and they get it. And for the fact that it's at Starbucks (caramel brulee frap... whoa!, and lets just add the muffins the size of my face at Martins.

3) For my respite care morning. I end up being out of the house for like 4.5 hours. It goes too fast, but it's wonderful.

4) For the WCC Holiday Tea (in advance). It's such a girly thing, but I LOVE it.!

In other news, Micah has his last IFSP plan meeting today. It's what early intervention does to set out goals for the upcoming year. I can't believe it, but soon he'll be transitioning to the school system! (Okay, not soon, but this spring!) I'm hoping he still qualifies for all his therapies, although he may not. It's complicated.

I've been desperately trying to get a video on here, and it's not working. Which is SO sad, because I think it's so funny... But I'm his mother, I'm supposed to think that.

So, all I have is a picture. Maybe the video will cooperate someday.

Sunday, November 13, 2011

Whooo are you???

Not sure why, just had a random "Alice in Wonderland" moment.

I'd love for some of you to comment and tell me who you are! People check in from places I've never heard of, sometimes in different countries.

The easiest way to comment is "Anonymous" or with your website, which I'd love to follow. :) Just make sure if you choose anonymous that you put in your comment who you are!


Friday, November 11, 2011

Thankful Thursday (+12 hours)

And, Thursday came and went. Oops. Told ya!

1) For getting to see a million people at WCC on Sunday. I only get over there about once a year, so it's nice to see everyone including some from my moms group last year. And...
2) So thankful for my parents staying an extra hour and for my mom taking micah to the nursery. This was the first time he's really gone to the nursery to play with other kids. While the germ-a-phobe in my just about threw up thinking about it, I was SO glad he was able to have that normal experience (and that I got to sit through church for the first time in a LONG time!) I love my home church, it was just nice to have a change of pace!
3) Micah got his cute little feeding pump that goes in a cute little backpack (although the backpack already broke! Boo!) It's nice to let him have more freedom to roam and not be herding him to get fed every 15 minutes!
4) For podcasts online. I've been listening to various podcasts this week from various churches and Bethel. It's been a blessing since I can't always get to church.
5) For a fun group of youth, and the fact that Travis is cool again (in the eyes of Cora, but not Erica). They are great kids, I hope their parents realize this! We've got some fun things coming down the tunnel. New things! :) Can't wait to roll it out! (By the way, this isn't my job, it's my husbands... hehe!)

Alright, that should be enough for the week. It's been a good week. Micah's got some bug (remember that germ-a-phobe thing.. yep... this is why). So far it's been relatively easy... suction city but no sign of respiratory issues other than that! Hooray!

Wednesday, November 9, 2011

Super fabulous bloodwork

Micah rocked his bloodwork. His white blood cell count was decent, his hemoglobin was decent enough, and his IGG was through the roof! 490! :) WHAT?!?!

In english... IT'S GOOD!

It means, barring any significant trouble, we can avoid the city of Cincinnati til December 15th or 16th. That'll be 2 WHOLE MONTHS! :)

The abnormal has become so normal, the old normal seems abnormal. Got that? Eh, me either it's past my bedtime.

I'm trying to upload another silly video, it's just not working. Sorry. Internet doesn't seem to be quick enough. I'll try to edit tomorrow and try again.

On a bummer note, the little man is sick, it appears. That's what happens for being let out of the house for the last ten days. As long as it doesn't turn into anything major, it's no big deal.

Tuesday, November 8, 2011

Micah's first "real" word!

It may not qualify for all of you as a first word, but we're going to take it!!! :)

Haha, I forgot to mention he's running around without pants because he'd just got a clean diaper :) (Just ignore that part!)

Sunday, November 6, 2011

It never fails.

It never fails to amaze me to watch how many people visit this blog. Crazy! Well, thanks for reading!

Things have been delightfully uneventful here! :) Can't complain about that!

We had a little dance party tonight to the "Walt Disney" station on Pandora. Nothing like the jungle book song "bare necessities" to get your toe tapping. It's a fun station, I'd recommend it!

Micah has bloodwork on Tuesday, mostly to check his IGG and make sure it's not crazy low again. We figure it'll drop, but hopefully not as quickly as it has. It's been 3 1/2 weeks since he's gotten it, the last two times he's been over 100 points low by this point. We figure one more trip to Cincinnati before his surgery (Dec. 16). I can't tell you how happy that'd make me!

Thursday, November 3, 2011

Thankful Thursdays.

I'm totally stealing this idea. :) Whether or not I'll have forgotten it by next Thursday is another story. Remembering isn't my strong suit.

1) So thankful we haven't had to be in Cincinnati for the last 3 weeks (today!) It's been months since this has happened! We love our team, but they'd rather us stay home too!
2) For Target's dollar bins, which make me happy! 48 Christmas cards for $3. Yes, please! :)
3) For a really "normal" Monday. Travis is off on Monday typically and we went Christmas shopping and out to lunch with Micah. Poor Micah hasn't been out much at all in the last year, really! It felt so normal, it was almost abnormal!