Wednesday, November 30, 2011

What Do You Do All Day?

I was recently asked, "What do you do all day now that you're only working part time?"  Yes, it was a serious question.

Lest you think I sit at home lying on the couch watching soap operas and eating bon bons, let me fill you in. 

I work, during a typical 5-day work week, 17.5 hours.  My schedule changes every week, but just for kicks, let's say I'm working Monday, Wednesday, and half-day Friday.

Monday:  Relieve nurse at 7.  Work 8-3.  Come home, get report from nurse, make dinner.  Feed Abby, do therapy, play with Caleb, bedtime routine, trach-tie change, make milk, empty or run the dishwasher (it has to be run at least once a day!) wait up for nurse until 11.

Tuesday:  Relieve nurse at 7.  Matt is gone early for a Bible study.  Nurse comes at 8.  Take Caleb to school at 8:45. Run errands.  Clean. Watch my niece (which I love!) while my sister volunteers at her kids' school.  Pick Caleb up at 12:40.  Race back to the house for PT/OT @ 1:30.  Continue with cleaning during nap time.  See Monday's evening activities.

Wednesday:  same as Monday

Thursday:  Relieve nurse at 7.  Nurse comes at 8.  This is my day to do lots of cleaning, since Matt takes Caleb to school.  Pick Caleb up at 12:40.  Race back to the house for speech @ 1:30.  Continue with cleaning during nap time.  See Monday's evening activities.

Friday:  Relieve nurse at 7.  Work 8-11:30.  Run errands.  Pick Caleb up from MMO at church @ 1:30.  Back for naps.  Get report from the nurse.  See Monday's evening activities.

Any of these days could be completely thrown out the window if we have a doctor's appointment, which usually is the case.  If that happens, my work schedule is rearranged because it's much easier to change that than to try to get the appointment on a different day.  My wonderful sister is great about picking Caleb up from school and keeping him until we get back.  If we have an appointment at JHH (which is everything except her pediatrician), I can expect to be gone at least 5 hours. 

There are also many, many meetings that are scattered around.  More often than not, I have at least one Abby-related meeting a week.  I try to schedule those on a Tuesday or Thursday afternoon after her therapy is done.  Most of the time, I don't have to take Abby to these.  There is one where it's a requirement, which inferiorates me because I'm exposing her to unnecessary germs every time I take her in, but I have to be nice to these people or they'll take away our benefits.  ;)

Saturdays and Sundays are wacky because we do not have a day nurse (and haven't since July).  Therefore, unless Matt happens to be home, I am at home all day and all night.  (If you're new around here, I can't drive alone with Abby because someone needs to sit next to her in case she needs to be suctioned or is in distress). On those types of days, I try to do fun things like bake with Caleb, or make Lego crayons, or play outside, etc.  It helps to make the day go faster. 

I hope that it goes without saying that we do not have a lot of "free" time.  My "free" time is spent waiting for the nurse, which is why I am able to blog.  Since I have to stay in Abby's room, I'm limited as to what I can do and blogging is my release.  We don't watch TV unless it's something special.  I have only been out with Matt without kids twice since we brought Abby home.  Only one of those times was by ourselves, since the other was a Chris Tomlin concert with the youth group.  (Not that I'm complaining about that--it was awesome!!)

I don't tell you this so that you'll feel sorry for us.  Not at all!  I love the reason my life is like this!  But I do want to set the record straight and make sure you realize that I am part-time out of necessity, not for luxury.

Tuesday, November 29, 2011

Standing

Abby is standing very well now.  She can play and hold onto something at the same time, which took a while for her to get the hang of. 

Now I put the play table up like this so that she has to reach up higher for it. 


Love those cheeks!

We're now trying to get her to take steps while holding onto something (like the coffee table) to get to a toy.  There's always a "next step" in her therapy, but we try to make it as fun as we can!

Monday, November 28, 2011

The Tennis Match

Caleb has not one, but TWO bunnies that play music.  Aren't we lucky?!  :) 

This reminds me of a tennis match as Abby goes back and forth between the two.

Sunday, November 27, 2011

Saturday, November 26, 2011

Family Photos

Here are a few of the pictures I took of my sister's family.  We went to a local park and tried to monopolize on the twilight awesomeness, but I forgot about daylight savings (these were taken the day it switched).  SOOOOOO, they're a bit shadowy at times.  But I think there are still some good ones!













Friday, November 25, 2011

Ponderings

There's a whole lot going on in my head right now, but I wanted to share with you an article that was written by the sister of a trach mom.  Her nephew has CHARGE Syndrome, which is pretty rough as far as syndromes go.  She shares her perspective on the way people respond to her nephew.

I could go into so much about this, but I'm simply going to ask you to think about your staring, your questions, your facial expressions, your misconceptions.  Remember that the special needs child you're gawking at is a person and the family with him or her has unconditional love for that child.  Remember that the way you treat that special needs child can either make the child and his or her family feel accepted or isolated.  Remember that everyone just wants to feel loved.  Remember that God made everyone perfect in His eyes.  Remember that your harsh comments and attitudes are hurtful.  Remember that somewhere, a mother is crying late at night because she just wants others to see her little girl the way she sees her. 

Laundry Basket!

Caleb's laundry basket has been falling part for a while now...like, a couple of years.  I just haven't gotten around to replacing it. 

Enter Lock and Lock!  I got this as a supporter gift!

It's a lot bigger than it looks, and it holds quite a bit of little boy laundry!

These are also stackable, if you have more than one.  I don't right now, but I might have to order some more!

Thursday, November 24, 2011

Happy Thanksgiving!

I feel bad for Thanksgiving.  It often gets skipped over because people go right from Halloween to Christmas.  It's always been a favorite holiday of mine because it isn't over-commercialized...just lots of good food and family!  Plus, I love to watch the Macy's Day Parade!  :)

Here are a few of the many things I am thankful for this year:

*  We're home celebrating rather than in Baltimore.  As much as I love RMH, there's no place like home!  We celebrated 4 holidays there last year, and it's just really hard to be away during this time of year.

*  My kids.  They are both so great!  Caleb is absolutely the best big brother for Abby.  I also love that I'm getting glimpses of some of his strengths as he heads into school.  He loves to build things and solve problems as he builds, and he is also really good at math.  Maybe he'll be an architect!  Abby has overcome so many obstacles and is really developing well now.  She is learning something new every day and loves to play.  She's really a happy baby and is pretty content with a box or a water bottle to play with!

*  Matt.  What a wonderful man God gave to me!  He's not perfect (and I venture to think he would say the same thing about me!), but I am convinced more now than ever that he was created for me!  We have been through a lot together this last year.  I love to see him with his kids and appreciate the hands-on dad he is.  He's not afraid to change a diaper or give them a bath!

*  My job.  WHAT. A. BLESSING!  There are very few jobs out there that give me such great insurance and a flexible schedule--not to mention great coworkers!  It's definitely been a learning experience as I started in on something totally new, but I really love it.  I enjoy working with so many different teachers and have already gained a lot of experience.  I think having this position will make me a better teacher. 

*  Abby's "playmate."  That's what our day nurse calls herself, and she is so wonderful!  It is awesome to finally be able to know that Abby is in good hands when I am not there.  She truly is there to play with Abby, and she seems to really enjoy herself too!  It's cute to see how much Abby likes her.  I don't have to worry about Abby being left in her crib or that she isn't getting therapy while I'm gone, because her "playmate" just does it!  I tell her all the time how thankful we are for her (and that she can never leave!!)  :) 

*  Our therapists.  All 3 of them (OT, PT, and speech) are absolutely amazing.  They are so good with Abby and have the mix of gentleness and firmness down pat!  They don't let Abby get away with anything!  I have complete trust in their abilities and am so thankful for the insights they have given me.  At times, they've also been a support when I feel like none of the therapy is working and things are just not moving fast enough.  They're always there to assure me that Abby is doing a great job and "she'll get there!"  They have also been a great resource for us when we go to the doctor and often give us info or ideas to share with them regarding Abby's development.  They are a huge reason why Abby has made such great gains.

What are you thankful for this Thanksgiving?

Wednesday, November 23, 2011

Hugs

This will just about melt your heart! :)


Since Abby hasn't said any words yet, this is one of her first signs of affection (besides the big smiles and clapping she does when we walk in the room!).  I just can't get enough!!

Wordless Wednesday


Tuesday, November 22, 2011

Medical Update

You know that vent weaning we were so excited about?  Well, that's on hold for a little while.  :0/

Abby has an infection and has been on an antibiotic for a week.  It's a 10 day supply, so things should be pretty back to normal by now...but they're not.  So they're going to start her on another antibiotic for 14 days that is put in through a nebulizer directly to the trach.  Our doctor wanted us to start it as soon as possible so that we could start to see some improvement.  If only she were able to just give us the medicine herself...

I found out tonight that it is incredibly expensive (read:  $4,500!!!) and there is no generic. I have a feeling my insurance is going to balk at that one, so I hope Medicaid will pick it up.  Of course, that will require a pre-authorization, and the state offices are apparently closed for the rest of the week...awesome.  We're talking Monday before the request even goes across the desk, and then a few more days for them to hem and haw over it, if history repeats itself.  So "as soon as possible" may be Wednesday, November 30th.

Our doctor won't do anything with the vent weaning--not even turn down the rate--until Abby is done with this new medicine.  Her vent rate has to be at zero (she's at 6 right now) before she can go to MWPH for the final weaning...so stopped singing the "All I want for Christmas is the vent to be gone" song. 

I won't lie--it's a little frustrating.  But I don't want Abby to be set up for failure, so I'm willing to wait until the time is right.  I just hope that time is soon!

Just Because...

How to Talk to a Special Needs Child (and His/Her Family!)

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!

Monday, November 21, 2011

A few quick updates

I worked all day today and am going to MOPS (Mothers of Pre-Schoolers) tonight, but I know my friend Linda gets worried when I don't post!  :)

Abby has learned how to give hugs this weekend, and it is incredibly cute!  I'll say, "Give me a hug!" and she, of course, first shakes her head and smiles.  Then she leans forward and lays her head in my lap with her arms holding my knees.  If I lay my head on her back, she always giggles.  It is sooooo cute!  I am going to try to get a video of it sometime soon, but I was on my own this weekend!

The next few days will be chocked full of blanket-making for the Welcome Project with the youth group on Wednesday, two Thanksgiving dinners on Thursday, Christmas decorating on Friday (Matt will be doing stuff with the youth group all afternoon/evening), and serving dinner and doing the activity hour with MOPS at RMH on Saturday!  Sunday, I'm hoping to finish up the inside Christmas decorations and maybe get Matt to put up the lights. 

AND, of course, there will be lots of thankfulness!  :)

Sunday, November 20, 2011

All of My Gray Hairs are Named Abby

Well, Matt is gone this weekend, so naturally that is the perfect time for Abby to start acting up...and by acting up, I mean worry me to death with low saturation levels.  She obviously missed her daddy and would do just about anything to bring him back home quicker. 

Abby is taking a nap right now and Caleb is at church with my sister and her family, so I have a few minutes to recount the events of Friday evening.

Abby had two episodes of intense coughing where she turned purple.  I suctioned her both times.  The second time, she also started sort of foaming at the mouth (not like a seizure...just a ton of saliva) and then it all shot out at once.  Her saturation levels (how much oxygen she is able to get--it's a percentage with 100% being the best) were also not as high as they usually are.  It was really weird and she wasn't acting right, so I called the pediatric pulminologist on call at JHH.  She suggested giving a nebulizer treatment (Albuterol, like a fast-acting inhaler) and monitoring her closely, but said to bring her in if things did not improve or got worse.

I gave her a neb treatment, did lots of chest PT (banging on her back to break stuff up) and kept her hooked up to her pulse oximeter so that I could watch her sats.  She was doing better by bedtime, so I figured a neb treatment was all she needed.

Around 9:30, her sats really started dropping to levels they haven't been since the hospital, so I hooked her up to oxygen through her ventilator.  The levels were still dropping and not staying up even with the oxygen, so I turned it up higher.  Her sats still dropped lower than I have ever seen them at home.  Abby was asleep, but very agitated and kept opening her eyes.  At this point, I called my parents to ask if they could come get Caleb in case I needed to leave for the hospital.  Abby doesn't make me nervous too much these days because I'm used to her drama, but I was definitely concerned here.

Our night nurse came and I met her at the door to explain what was going on.  I had already set up everything for a trach change, which I told her was my last option before going to the hospital.  We changed the trach (which I could do on my own in a true emergency, but I'd just decided to change it a few minutes before she got here, so I figured I would just wait for her) and Abby immediately improved.  Thank you Lord!

There was nothing visibly wrong with the trach and she didn't have any plugs (thick secretions that keep her from breathing), but something about it must have been bothering her.  We turned the oxygen off and continued to monitor her for a while, but she was fine.  Crisis over!

Throughout all of this, I was texting Matt to keep him informed, and he was just about ready to come home.  Thankfully, she settled down and everything was fine.  I've had no problems with her the rest of the weekend, so it was obviously something with the trach that caused her distress.  I saved the faulty trach for Matt to check out, but I couldn't see anything wrong with it. 

I did my post-emergency crash late that night and thanked God for giving me a level head and for getting me through another crisis.  With each one, I think back to January 25th when we almost lost her.

Unless you have been there, you can't relate to the stress and concern we constantly feel.  Unless you have been there, you have no idea how you would react in these situations.  Unless you have been there, you can't know how I felt watching her sats drop even with oxygen.  Unless you have been there, you can't understand.  But I appreciate your prayers!!  :)

Pretty

Abby LOVES to wear my necklaces!  She gets really excited when I give one to her.  Of course, I can't let her wear or play with one that is breakable, but lucky for her, I wear a lot of Mommy Necklaces.  They are made with non-toxic acrylic beads with a break-away clasp, so they're more or less indestructable.

They are marketed as nursing necklaces, but I wear them all of the time just because they're pretty and Abby likes to play with them.  :)

If you "like" them on Facebook, you'll get notifications of sales and bargain sites that are selling them.  That is how I have gotten all of mine. 

She would giggle whenever I put it on her, then immediately pull it off.


She seems to especially like this one out of all of mine (I have 4).  I think it may be the pinks.



I think her shirt suits her, don't you?

Saturday, November 19, 2011

One Cheap Toy

Abby has a room full of toys, and what does she want to play with? 

The box my L&L supporter gifts came in!
She liked playing peekaboo with the flaps

cheering for herself

Yes, she is standing here!  :)

Friday, November 18, 2011

Fancy Schmancy


In case you're wondering what kind of stuff I get for being a Lock and Lock supporter, this is just one of six or seven items that came in a huge box last week.  It is well worth the blogging time when you get such awesome products to use and review! 

This is a Speed Cook pot.


One of those most fun things about it is that it has holes in the top of the yellow handle on the lid for your chopsticks!!  (Lock and Lock is an Asian company, so many of their products support Asian customs and traditions!)  PLUS, you can flip the lid over and it is a bowl!! 

After using this pot for rice, it does seem to boil the water faster.  I was surprised at how quickly the water boiled--and on my "slow" burner at that!  But it's also a really nice, lightweight sauce pan at a good price.  Plus, L&L is always having some kind of deal, so keep an eye out if you like this pot!

  I am not ashamed to say that most of my pots and pans were hand-me-downs, so it's awesome to have some quality pieces to use!  Now I just have to clean out my pots and pans cabinet to make room!  :)

Thursday, November 17, 2011

The Duggars and a Chore Pack

I have recently been reading all about the Duggar family in their two books:


and


 
I can't say that I agree with all of their practices (I really hate skirts and would pretty much die if I had to wear one every single day!), but I do feel like I can connect with them on some level about their reasons for going public with their family.  We're certainly not on a TV show or anything crazy like that, but making yourself vulnerable to others can be nervewracking.  They don't water down their faith on the show or in their books, and I like that.  I also like some of the family structure they have and the responsibilities they give their children.
 
Enter:  Chore Packs!
 
The Duggars give each child a Chore Pack, which are cards with one chore on each one.  (There are pictures for the younger ones).  They are held together by a ring and the kids flip through each one to make sure they get their chores done. 
 
Well, we're feeling like Caleb is ready for some daily chores.  Until now, it's been more of a help-as-you're-needed kind of atmosphere, and it obviously still will be!  But I want to give him some daily responsibilities.  We all sat down together and talked about what we thought Caleb could handle.  We decided that he would be responsible for picking up his room, picking up toys in the playroom, vacuuming the kitchen (we have a little cordless sweeper), and wiping down the 1/2 bathroom with a vinegar/water solution. I wrote each chore on an index card with a picture clue for each one.
 
This may seem like a lot of chores, and we're still working out some kinks, but the picking up of the toys has already been an expectation.  He often vacuums the kitchen anyway, just because he likes the sweeper!  He has also cleaned the 1/2 bath quite a few times to earn an extra dime for his snack shop.  So none of these chores are new, and we aren't expecting perfection.
 
His chore pack hangs in the kitchen in a visible spot.  When he is done with each chore, he is supposed to bring the pack to one of us so that we can go inspect it and check it off.  There is a check-off on the back so that we can see if he did his chore for that day.
 
In exchange for his doing his chores with a good attitude and (eventually) without reminders, Caleb will earn a dime for each chore to spend in his snack shop.  This could potentially be a lot of dimes (which translates to a lot of snacks!), so we're ready to amend that as necessary!  On the flip side, he will lose a dime for each chore not done or done with a negative attitude.  OF COURSE, there have been many, many reminders in the beginning and we're not expecting this to all tranform overnight.  But, the goal is cheerful obedience!!  (I want to be a fly on Michelle Duggar's wall.  I don't know how she got those kids to be so obedient!)
 
We're not quite ready to jump into a full-fledged allowance and aren't sure if we ever will be, but dimes for the snack shop seem to be plenty of motivation for Caleb right now, so we'll go with it!
 
The first few days have gone pretty well, but I'm anxious to see how things go once the novelty has worn off.  We stress often that we all have jobs to do around the house and that since he's a member of this family, he does too!   
 
It's a work in progress.  I would love to hear how you handle chores at your house with the little ones!  What works, what doesn't?  Oh, and when should I expect Abby to start earning her keep?!?  :)

Wednesday, November 16, 2011

HUGE Sale on Lock & Lock!!

There is a huge sale from now until November 20th at http://www.lockandlockplace.com/.  EVERYTHING is 50% off with the promo code
PREBLK2011
 
I just got some gifts to stash away, as well as some containers to help me organize my hall closet.  Good deals, good deals!!  :)

Organizing Abby's Toys

We have been using a communication book with Abby where I printed small iPad icon-sized pictures of various toys she has and put them in little pockets.  If Abby wants to play with a toy, she has to tell us first by pointing to the picture.  She's doing a great job at this, although she sometimes gets frustrated when she can see the real toy and we make her point to the picture! 

All of this is getting her ready to use an iPad communication app where she will touch a picture and the iPad will speak for her.  She's been working with one during speech sessions, and if she touches the picture of the blocks, it will say, "I want to play with blocks."  It's pretty cool!

The only problem we've hit is that it's sometimes hard to find the toy that she points to once she's told us she wants it...her toys were pretty much just thrown into 6 or 7 different baskets.  There was no rhyme or reason to it, so I often would only give her picture choices of the toys I could find quickly! 

I decided that this method wasn't the best for long-term communication skills, so I reorganized her toys.  Almost all of the baskets have been taken out, except for the two that hold her stuffed toys.  The rest of the toys are organized in...you guessed it...Lock and Lock containers!  :)

The bottom one holds links and teethers (I know that picture of a cow doesn't look like either one of those, but it's actually a stroller book that attaches to the stroller/car seat and Abby chews on it like a teether.) :)

The top one is a few miscellaneous toys I couldn't find another place for.

The big box is one of my favorites.  It holds a TON of stuff!  I could fit all of Abby's blocks and balls in here, and she has a lot.  There's still room to spare!

The top orange box holds all of the shaker toys.  It's actually called a lunch box and has a handle at the top.  Once in a while, L&L has great deals on the lunch sets (a lunch box, a couple of small round/rectangulars, and sometimes a water bottle--they have different sets) so I try to grab them when I can.  They make great gifts and the lunch box size is really nice. 

Actually, the bottom one that holds Abby's tea set is also a lunch box.  I use them a lot!

I can't seem to find the exact set I have, so I'm guessing it is discontinued. A set like this is a good one though.  Bonus:  it's on clearance for $9.99!  :)

Tuesday, November 15, 2011

Fear

Last Saturday, we changed Abby's trach just like we do every Saturday.  This time, she just kept coughing after we finished and couldn't stop.  Her face turned a dark shade of purple and we quickly suctioned her to get whatever was in there out.  That didn't seem to help, but then I noticed that her trach ties were really loose.  For whatever reason, now that the tube that goes inside is longer, it really bothers her if the trach ties are loose and the trach can shift a bit.  We tightened the ties and she finally settled down.  Just to be safe, I hooked up a nebulizer treatment to give her some Albuterol (the equivalent of a fast-acting inhaler). 

Once things calmed down a bit and Abby started breathing normally again, Matt and I did our typical post-semi-emergency ritual and collapsed in a heap on the floor.  This kind of thing hadn't happened in a while and it started without warning, so it certainly got our heart pumping.  The memory of the day we nearly lost Abby burned in my mind.

You see, there will always be a certain amount of fear when I think about Abby.  I just don't know how long we will have her.  We face the fact that a common cold could kill her.  In fact, as I wrapped Christmas presents in front of her the other day, I teasingly told Abby that I wouldn't be able to do this next year...and then I stopped and immediately prayed, Lord, please let there be a next year.  The hard truth is that we just don't know what tomorrow will bring.

But isn't that the truth for everyone?  Couldn't something just as easily happen to Caleb to rip him from our lives forever?  There are no guarantees for any of us.  In a way, I am thankful that Abby's future is so uncertain because it is forcing me to appreciate every second and focus on the beauty of the little things.  You don't know how many times I stop and smile when I see my girl clapping, or as I watch Caleb get creative with his Legos.  I'm certainly not perfect in the stop-and-smell-the-roses mentality, but God has definitely been teaching me to value each moment.

Sometimes I get on here to write and have no idea where I'm going with a certain topic.  That's when I just hope that God uses me in some way!  If there's anything I can stress to you, it's to love your children...enjoy every second with them...give them lots of hugs and kisses...and cherish the little things.

I leave you with this article and hope that you find it a beautiful reminder like I did.

http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&src=tp&smid=fb-share

Monday, November 14, 2011

Can Do's

In the ESOL (English as a Second Language) world I'm now living in, we have what we call Can Do statements, or Can Do's.  These are written as what the ELL (English Language Learner--Special Education and ESOL are battling for the biggest number of acronyms!) is able to do instead of focusing on everything he or she is unable to do.  It just puts a more positive spin on things.

I like 'em...a lot...and even more so when I think about them in relation to Abby.  So much of her life focuses on what she can't do (because, face it, that is what the doctors need to know!) that it is sometimes rather discouraging...especially when they bring in that dreaded n-word* that I hate oh-so-much.

*normal

So, I figured I would make a list of some of Abby's Can Do's!

Abby can...
*  stand while holding onto a table or other sturdy piece of furniture without help.
*  take a few steps while holding onto furniture with a bit of assistance.
*  roll around the floor like a champ!
*  tall-kneel at her play table or learning cube
*  transition from a kneel to stand, sit to stand, sit to back, or sit to stomach with assistance.
*  hug her favorite stuffed toys (especially her kitties, No-No and Hopkins!)
*  blow bubbles from her mouth (and trach!) and blow rasperries.
*  make squeal noises from her trach
*  move her lips to mimic talking
*  eat 1-2 teaspoons of solid food 3-4 times a day (especially applesauce!)
*  sign "more" and use her pointer finger to show you what she wants
*  communicate using a book with picture cards in it in preparation for an iPad communication program
*  clap her hands to show excitement (she does this whenever one of us walks in the door, and it's really, really cute!)
*  steal Caleb's toys, knock down his creations, smack his face, and pull his hair
*  throw tantrums when I won't let her play with my iPod
*  shake her head "no," especially if she really doesn't want to do something

I have found that thinking about her Can-Do's has really helped me to realize how much Abby really can do!  It's so easy to get caught up in the can't do's!

Sunday, November 13, 2011

Obsessions

The Lock and Lock obsession starts young!


 I was filling out this little survey that we did for our Secret Santa at work, and it asked what we collect.  I thought for a while, and I don't really "collect" anything...except Lock and Lock!  So I wrote that!  Hey, anybody who bought me L&L would be the best Secret Santa ever!  :)

I may or may not have a stash in my garage of brand new L&L containers that are waiting to be used to organize a cabinet or closet!  Hey, when the urge hits me, I have to be ready!!

Rollin' on the River

...or the carpet!

Abby is a rollin' fool these days.  She can pretty stop, drop, and roll to get wherever she wants to go--especially if it is something she isn't supposed to have, like my camera (eek!) or Caleb's Magnetix creation.  This video wasn't the best example of her rolling superstardom, but you get the idea. 

Abby is also doing really well standing now.  She loves to stand at the coffee table and bang her toys on it.  (Good thing I let go of the don't-ding-up-the-coffee-table idea  few years ago!)  The other night, she was standing there holding on and I was trying to get her to clap.  She didn't want to let go of the table, but she reallllllly wanted to clap.  The smartiepants leaned down on her elbows and clapped her hands so that her arms never left the table.  She is such a mess!

Saturday, November 12, 2011

Practicin'


She's getting there!

Friday, November 11, 2011

Glass Wars

In the past few months, I have really been trying to make the change to using glass in the microwave instead of plastic.  I'm almost there...I am to the point where I notice when I stick a plastic container in there!  To help with this, I've been trying to put our leftovers in glass containers whenever possible.  This makes it much easier to heat them up without having to pour them from the plastic container to a glass one.  (Plus, it cuts down on the amount of dishes in the dishwasher that we already run every day!)

I got some more glass containers in my last L&L supporter shipment, which made me extremely happy!  I have been running out of glass containers if I have too many leftovers, so this should help.

I do have some Pyrex containers that I will bake in, but honestly, I try to avoid putting leftovers in them.  I'm not just saying this...the Lock and Lock containers keep the food fresh for a whole lot longer!!  Since I'm the only one in my family who appreciates a good leftover, this is important!!

If you're looking for some cheap glass containers, there are some both in the $1 store and in the regular clearance section.  The $1 store is closing on the 14th, so you need to head there soon!

Sibling Lovin'

 Abby's weapon of choice against Caleb
But they really do love each other!

 I find that I catch those moments the best when they don't think I'm taking pictures
So I just snap away while they play

and I capture all kinds of true love


And I even got one posed picture!


Thursday, November 10, 2011

Wednesday, November 9, 2011

Great News!!!!

Abby had her pulminology appointment today, and it was decided that she is ready to be completely weaned off of her ventilator!!!!!!!!!!!!!!

WAHOOOOOOOOOOOOOOOOOOOO!!!!!!

There are a lot of steps to this process.  First, we will schedule for Abby to be in-patient at MWPH (where she discharged originally) for a few days.  Between now and then, we will be slowly turning down her breath rate (which is currently at 6 breaths per minute--bpm) until she is not receiving any breaths from the vent.  (In case you're wondering, all that is left when she isn't getting breaths is what is called pressure support, which basically gives her lungs a little extra push so that they can inflate a little easier with air.)  Once she's down to zero bpm, she'll be as ready as she can be to go officially "off."

Then the fun part starts!  She'll go into MW (this time by car, not be ambulance, and by one of us carrying her, not by stretcher!) and will basically just hang out until bedtime, when she will sleep without the vent.  Obviously, she'll be monitored carefully that night and the next.  On the third night, they will do a sleep study where they hook up all kinds of probes and wires to make sure she's not having any issues during her REM cycles. 

The reason we are doing the sleep study later is because kids usually do fine the first few days, but then their bodies get tired and slack off.  Our pulminologist wants to make sure that she's not starting to struggle on that third day or so.  I really liked that idea and wholeheartedly agreed!

I will be calling to schedule everything and get the ball rolling tomorrow, but we are hoping to have her completely off of the vent by Christmas!!  ("All I want for Christmas is the vent to be gone....")

Because Abby won't be "sick" while she's in the hospital, she will basically be able to go wherever with me and have some fun.  I have big plans to show her around the hospital and visit the playroom. :)  I'll hopefully stay at RMH each night (I can't stay at MWPH in 12-Bed where Abby will be) but spend the day with my girl.

Yay for some excellent, unexpected news!  I was just hoping our pulminologist would say we could do naps without the vent, so this is waaaaaaay better!

Wordless Wednesday

Tuesday, November 8, 2011

Lock & Lock Dollar Store

Lock and Lock is having a $1 sale right now and there are some really good buys in there!  My favorite is this half and half container.  I use this one all of the time in Caleb's lunches (broccoli and dip, chips and salsa, two different snack items, etc.)  $1 is a really good buy for this, so snatch it up now!  :) 

There are a few other fun $1 buys too, like this big container or this water bottle.  We have several of the water bottles in various sizes and really like them. 

PLUS, right now if you spend $100 in one transaction, you get a $25 gift card for L&L!  Christmas shopping, perhaps?!

Let me know if you score any good deals!

Craft Time

We had 4 crafts the kids could do to go with our four seasons theme.

pumpkin playdough (fall) and they each got their own little pumpkin ball to take home



Planting flowers (spring)



Bubbles (summer)

and painting ornaments (winter)

We also had a moon bounce, just because it's fun and it lets them get some energy out!



The crafts seemed to be a hit and kept the kiddos busy!  :)

This little one was just completely worn out!



Monday, November 7, 2011

Article

For several months now, we have had the pleasure of talking about our story with a young journalist.  She heard about it through a friend of ours she worked with and got our contact information.  "A" is in a journalism master's program and originally interviewed us for an article she wrote for a class.  Now, she is doing an internship at CNS and called us for permission to write our story again...this time with a different focus. 

After lots of emails and phone calls, the final article was sent "out on the wire" (that's newspaper-speak for ready for publication...aren't I fancy?!) and to our surprise, it was picked up by Fox news!  Here is the link:

http://www.foxnews.com/health/2011/11/04/after-grim-diagnosis-parents-turn-to-internet-social-networks/

Our sole reason for agreeing to the article was that we would be able to share the miracles God has performed in Abby's life and point others to Christ.  We hope that if you have found the blog after reading the article, you will take a minute to read about what God has done in Abby's life and in ours.  We strive to be transparent and to let you know that we don't have it all together, we don't have all of the answers, and we don't know what the future holds for our family...but God does.  Through Abby's life, God has blessed us in ways we couldn't have imagined and sent our lives on a totally new path!  We hope that you find our blog an encouragement and we would love to hear from you!

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