Friday, December 31, 2010

Today

Today, I learned more about this program for special needs families.  It looks like a wonderful organization, but I wish we didn't qualify.

Today, I cuddled my daughter and wished that she didn't have to face all of this pain--both physical and emotional.

Today, I just want to be able to hold Abby without a million wires and tubes getting in the way.

Today, I want so badly to be able to give her a bottle.

Today, I miss hearing Abby cry.  I know that sounds strange, but I do.  Don't take that for granted!

Today, I wish that all kids and parents could just accept Abby for who she is so that we can avoid the hurtful looks and comments.

Today, I am trying to figure out how I'm going to do all of this.

Today, I just want to go home.

I have heard it said that when you have a special-needs child, you go through a sort of grieving process for what you won't have.  Every time I feel like I have finally let go of what I thought things would be like, something else comes to mind that brings fresh tears. 

Today (tonight) has been rough.  I know I write a lot of positive posts and try to keep things pretty optimistic, but sometimes, there's nothing to say but this stinks.  And that's exactly how I'm feeling tonight.  So thanks for continuing to pray for us.  I know that things are better than they were those first few terrifying weeks, but we still need a lot of prayers.  This is by far the hardest thing we've ever done. 

But, we love our girl.  So we're going to do it, because love is strong enough to overcome all of this.

But it still stinks.

Technical Difficulties

For some reason, a couple of my blog posts didn't post at the time I had set them, so you got a whole bunch at once.  Then, I put in the wrong date for my New Year's post (it should have been 1/1/11 at 12:00 a.m., not 12/31/10 at 12:00 a.m.!)  That's just a tad bit anticlimatic, now isn't it?

Oopsie!  Please ignore these technical difficulties and still try to like me.

New Year...New Beginnings!

It's fitting that we will be going home with Abby in January.  January 1st marks a new year and is often symbolic of new beginnings.  The Leach family will certainly be starting over in many ways!

My New Year's resolution is to cherish the little things...when Abby looks at me with those big dark eys...when Caleb cuddles with me...when Becky lays her head in my lap...when someone sends me a sweet card...when students in my class give me hugs...

All of those "little" things are so very important to me!  I hope and pray that I can truly cherish each moment and be thankful for everything God gives me.  It's way too easy to get wrapped up in our situation and lose sight of the most important thing about Abby:

She's here!

As nervous as I am about bringing Abby home, I wouldn't change it for the world.  I am so thankful that we get to bring her home!!

I would love to hear your New Year's resolutions as well.  Please feel free to comment and let me know what they are!

Thursday, December 30, 2010

Swing of the Pendulum

So, the last few days, I have been feeling pretty anxious to get Abby home and start our new life.  I've felt pretty good about my level of knowledge and was kind of starting to get a handle on how all of this was going to work.

Yes, well, today I'm falling back more into the terrified realm.

I had my first vent training today.  dun, dun, dun!!!  It was overwhelming, to say the least.  There is just so much to learn and so much information to apply!  Turns out, this was the easy part!  Right...

So, let me quiz you to see how much of this easy stuff you know:

1.  What do they call the vent tubing?

2.  What are the names of the three different filters in the vent?

3.  How do you test the vent tubing to make sure it doesn't have leaks?

4.  What does PEEP mean, how is it measured, and how do you set it?

5.  Approximately how many different outlets do you need for all of your home equipment?

Alright, I'll give you the answer to the last one...12!  Thank goodness for power strips...

Yes, we have to actually take a written and performance test.  Yes, I took a million notes.  Yes, I have already started studying.  No joke!

Good news:  I really like the DME (Durable Medical Equipment) company we'll be working with.  My respiratory therapist seems great and I've been pleased so far with the equipment and supplies they are willing to supply.  We'll even be getting a bed that tilts (important for secretions) and has sides that lower.

Bad news:  This crib is the size of a twin bed, which makes for pretty tight quarters in our already cramped space. 

I long gave up the idea of Abby living in the beautiful bedroom we've decorated for her.  Now, it will be a very nicely decorated storage room, apparently.  We've converted half of the playroom into Abby's room.  There are a couple of reasons for this:

*  I would really like to keep the upstairs the family space so that we have at least a little bit of privacy.
*  We don't have satellite hook up in Abby's room, which means the nurse wouldn't be able to watch TV.
*  The alarms would most likely keep Caleb awake all night, since he's right next door to Abby's room.  (I don't mind if we're up because--at least in the beginning--we'll probably be awake all night right along with the nurse, but I worry about Caleb being up!)
*  We are on the main floor most of the day, which means that Abby will be around people and is able to interact more with others.  I don't want to isolate her!
*  She's not exactly the most portable little girl, so having her on the main floor where we are most likely to be is just easier.

No, we're not taking Caleb's toys away.  We did purge some, but it was looooong overdue for that anyway.  We have mostly just rearranged some things and made the basement a little more of a playroom as well.  The room is a work in progress, but we're getting there.  I have a cart and some storage units coming, but I think that we'll just have to see what works for us before we finalize the room layout.

Anyway, we weren't really planning on the crib being that big (quite a bit bigger than a regular crib), so that throws a wrench into the planning. 

Are you wondering what exactly has to go into the room?  Well, wonder no more!

*  the crib
*  a pole for the feeding pump/bag
*  the vent (which is on a pole and has the humidifier attached to it)
*  the pulse oximeter
*  a suction machine
*  oxygen tank
*  lots and lots and lots of storage for all kinds of medical supplies

It's gonna be a little bit cramped, but it's the best we've got.  We'll make it work.

Yeah, I know this post has been a little bit of everywhere.  Sorry about that.  That's how my mind is feeling right now too...

Have I mentioned that we will never be leaving the house ever again?!

The New Normal

Yesterday, I went home to work on getting the house ready for Abby's homecoming. 

Today, I began training on the vent she'll be on when she goes home.

We've done two out of three trach changes that need to be done.
Matt and I have both been signed off on g-tube care, trach ties, and suctioning.

Our case manager has found us a home health care company and a medical equipment company.

We'll soon be interviewing prospective nurses.

What does all of this mean?

There really is very little standing between now and when we will be able to take Abby home!  If everything continues to go well, mid-January will be our home date.

WAHOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!

Yes, I'm terrified.  Yes, I'm going to be a nervous wreck that first night (and every night after that!)  Yes, I'm concerned about how we'll get along with our nurses.  Yes, I will miss our old normal.

But that's just it.  Nothing about the past three months--since September 19th, to be exact--has been normal at all.  There is no "normal" for us anymore.  So even though Abby's homecoming won't mean returning to our old normal, it will allow us to create a new normal.  And we're looking forward to that.  I just want to figure out what this new normal is going to look like, and I can't do that until she's home.

And boy, are we ready for her to be home!

I get a little emotional just thinking about that day....what it will look like, who will be there to welcome us, the joy on all of our faces, the love we'll have for our family, the thankfulness to God that we will be feeling...

To be completely honest, there was a time when I didn't think this day would come.  Those first few weeks were the scariest in my life and we seriously didn't know if Abby would make it.  We never lost hope, but it was a terrifying experience.  I look back on it and realize that God is the sole reason why I made it through.  Someone once said, you never realize that God is all you need until God is all you have.  Too true.

So, just the prospect of getting to bring Abby home is thrilling to me!  I'm starting to get a little antsy, but I know I can wait until everything is in place for her to safely come home.

Home.  That has a nice ring to it, doesn't it?

Wednesday, December 29, 2010

Public Service Announcement

We interrupt your regularly scheduled program for this important Public Service Announcement:

Short cuts are not quicker when you get lost.  Therefore, you need to either follow the directions on your GPS or go the way you know.  Never, under any circumstances, should you claim that you know a quicker route than your GPS says...especially in Baltimore city. 

We will now return to your regularly scheduled program.

Wordless Wednesday

abby close up circle

bracelet on abbys knee rounded

toe round

Tuesday, December 28, 2010

Public Service Announcement

We interrupt your regularly scheduled program for this public service announcement:

DO NOT put your driver's license in your pocket for any length of time.  Inevitably, you will lose it. Then you will be forced to spend approximately 103 minutes at the DMV so that you can get a replacement. 

I repeat, DO NOT put your driver's license in your pocket for any length of time.

You know it's time to go home when you lose your driver's license because you have to turn in your ID to the hospital front desk so often.

Now, back to the feature presentation.

Cerebrocostomandibular Syndrome

Five people have found my blog by searching Cerebrocostomandibular Syndrome in the last month.  Now, I'm not sure if they are people who know me who just couldn't remember the blog address, or if they are people who need to find out more information about the syndrome.  I'm hoping it's the latter because I really do want to connect with people whose children have CCMS.  If you are reading this and your child has been diagnosed, PLEASE email me!  I would love to talk with you. 

From time to time, I'll do a post with the title of Cerebrocostomandibular Syndrome so that it will show up in Google if someone searches for the syndrome.  Between my blog and Reagan's, we just want people to know that there are real families out there dealing with CCMS!

Monday, December 27, 2010

Not Me! Monday!

Wow, I haven't done this in forever!  Well, this is a great story about what I did not do to revive this Monday tradition!

No, I most certainly did not attempt to boil four new pacifiers to sterilize them, only to become so preoccupied with my tantrum-throwing four year old that I completely forgot about said pacifiers.  They were not left on the stove to boil for over an hour in a small amount of water.  The water did not evaporate, leaving the now very sterilized pacifiers to melt and stick to the bottom of the pan.  No, I might not have burned down RMH had it not been for a keen-smelling man coming to investigate the burned rubber stench.

When I came to the realization that said burned rubber stench was some extremely sterile pacifiers, I did not run into the kitchen and burst into tears at the sight of a very scorched pan and a whole bunch of on-lookers.  I did not proceed to have a total meltdown that was a result of a pretty terrible day that culminated with melted pacifiers.  I'm sure people did not wonder if I still had my sanity.  I certainly didn't begin to question that myself. 

And in case you're wondering, nope, I didn't call Matt and beg him to turn his car around from his south-bound direction to our house and head up here at 10:00 p.m.  I would never do something like that.  I am totally in control of my emotions and can handle anything that comes my way.

Enough of what I didn't do.  Today, I did buy four brand new pacifiers, I did sterilize them, and I did stay in the kitchen the whole time the water boiled.  I also did take the pan off of the stove in a timely manner and the pacifers did sterilize perfectly fine.  :)

Spending Christmas the Best Way We Know How...

...With our family of FOUR!

family photo christmas

momma and children

reindeer botto

mom and abby close up

Sunday, December 26, 2010

Christmas Highlights

We spent the morning opening presents and eating breakfast at RMH.  Then, we headed off to the hospital to spend some time with Abby.  She was in a good mood and awake a lot of the time.  I was saddened by the lack of parents at the hospital.  :(  We came back here to meet up with my family, open up presents with them, and eat Christmas dinner.  Then we all visited with Abby!

It was a different Christmas, to say the least, but it was good.  We were together...all 4 of us.  There was a time when I wasn't sure that would happen, so I'm thankful!

Christmas isn't about presents, but Caleb did have a few favorite gifts this year:

*  A red scooter

riding scooter

*  Batman Trio Batcave (it's kind of like Legos)

*  A Leapster (with a Toy Story 3 game!)

*  Buzz Lightyear that makes all kinds of sounds

buzz

*  A take-along Thomas train track with trains

094

I also made Caleb a special doll that is just like Abby, complete with trach and g-tube (with a little help from some friends at the hospital!)  He can suction and feed the baby just like we do with Abby.  The respiratory therapists hooked Caleb up with all kinds of vent tubing, catheters, syringes, etc., so he's all set!  He liked it, but I think the doll will be really good when we go home.

Our present to each other was our amazing camera, with which I took plenty of pictures! 

I hope your Christmas was just as wonderful!

Saturday, December 25, 2010

A Christmas Tree Beneath an Overpass

Today, on our way to visit Abby, Matt spotted a tiny little Christmas tree set up beneath an overpass.  Obviously, a homeless person had tried to make the best out of a bad situation.

It got me thinking about how much we have.  Yes, our circumstances are less than perfect, but we have a wonderful place to stay, we have received some fabulous presents, and we were all able to be together today.  That homeless person had nothing to protect him but a bridge, probably didn't get any presents this year, and may not have been with any other family members at all.

I woke up this morning feeling slightly sorry for myself, but was set straight when I saw that tree.  We have way too many blessings to be pitiful.

I hope that you were able to enjoy Jesus' birth today with your family as well!

Wishing You...

A Merry Christmas!

us kissing caleb

family photo

Love,
The Leach Family

Friday, December 24, 2010

Things I Never Thought I'd Do...

*  Drive to, from, and all over Baltimore by myself...or in the dark...or during rush hour!

*  Change a trach.

*  Be on a first name basis with many insurance representatives.

*  Allow complete strangers into my home to care for my daughter--even when I'm not home or when I'm sleeping.

*  Be flown in a helicopter on a stretcher. (I prefer a sightseeing tour)

*  Navigate city streets on foot by myself.

*  Need a place like RMH to stay.

*  Be stuck with 100+ needles, two of which were in my stomach...and they were really big.

*  J-Walk on a regular basis.  (You must understand.  I'm a rules girl and rules girls don't do that.  It's illegal, which makes it against the rules.)

*  Ride in a cab alone.

*  Be able to give people directions to places in Baltimore.

*  Search in vain for a specialist that doesn't exist for a disease that nobody knows about.

*  Be separated from my family for the better part of three months.

*  Receive gifts, cards, and emails from complete strangers who just wanted us to know they're praying for us.

Yep, I'm doing lots of things I never thought I'd do these days.

Thursday, December 23, 2010

Beautiful...

Everything about last night was beautiful...

...100+ Baltimore police officers who brought in gifts for the kids of the Ronald McDonald House.

...shouts of joy when children spotted the Maryland State Police helicopter circling above us and aiming the spotlight at us.

...amazement on the faces of the families as officers carried in box after box of toys.

...three humongous mounds of toys that were spread across the main floor.

...excited squeals of children as they picked out bikes, games, dolls, Nerf guns, and every other toy imaginable.

...Pete, the man who started the program 17 years ago in honor of his mother, who was killed during a robbery for $60.

...tearful embrace Pete and I shared as I thanked him for doing this for us.

...encouragement he gave to me to cherish every moment.

...words Pete shared with the group of officers and families about Abby.

...tears Pete shed when he told them of the rarity of her syndrome.

...smile I had when Pete told me to call him when Abby graduated from high school.

...hugs I received from big, burly police officers with tears streaming down their faces.

The night had nothing to do with the presents.  It had everything to do with the love that filled this house.  Last night will be forever etched in my memory. 

Beautiful.

Thankful Thursday

caleb and amy
Caleb and my favorite sister Amy


I am so thankful for this girl!  She loves my boy like her own and has really gone above and beyond for us during all of this.  Doing much more than just giving Caleb dinner and a bed, Amy has calmed him when he gets upset, hugged him when he misses his family, and brought him up to visit numerous times just because I missed him!  Caleb isn't exactly the easiest boy in the world, but Amy has taken it all in stride because she loves us and knows we need the help.

I've always loved my sister and have grown very close to her in our adult years, but she has demonstrated her love and dedication to our family in new ways in the past three months.  I seriously don't know what I would do without her.  She calls or texts me often just to see how Abby is doing, and that's not easy to do when you're a busy mother of 3 +1!  (the +1 is Caleb!)  We've cried together quite a few times since Abby's birth, and I have been able to share with her a lot of my fears and frustrations that are hard to put into words.  She just knows.

So if you see Amy around, give her a big hug and thank her for being there for us.  She's the best sister anyone could ask for. 

I love you Amy!  Now stop crying.  :)

Wednesday, December 22, 2010

Ya Know...

...isn't it just like God to give you a day filled with encouragement and good news after having a rotten day?

Yesterday was pretty rough.  We'll just leave it at that, because that's not what this post is about.  This is about today being a pretty fabulous day.

*  Abby was awake for most of my visit and interacted with me quite a bit.  While her test results aren't back yet, she's feeling much better and they don't think that she has the virus they tested.  (Yes, we're still on contact precautions--but I'm determined to go in with street clothes on Christmas!!)

*  Caleb was well-behaved and really enjoyed his medical play time with Megan.  She gave him an entire bag full of medical supplies to keep!

*  Old friends of ours from high school, Keba and Aaron, came to visit us today while they're here from Seattle.  It was great catching up with them!

*  I was able to find a baby doll for Caleb and gave her a trach and g-tube just as he requested.

*  Thanks to the wonderful Baltimore Police, we ended the night with a bag full of all kinds of toys.

*  I met a wonderful, encouraging man named Pete who turned his own sorrow into a beautiful way to give to others.  His mom was killed during a robbery and he organizes the police toy drive every year in her honor.

*  There are some wonderful families here at RMH right now that I have really enjoyed getting to know.  Being the second most veteran family here at this point, we've seen a lot of families come and go.  The group that is here right now is pretty great! 

I am incredibly touched by the police donations we had tonight.  It deserves a post all of its own, but I'm too sleepy to write it tonight.  Be on the look out for it though, because it's a good one!  ;)

Wordless Wednesday

caleb kissing hand

Tuesday, December 21, 2010

10 Things

10 things running through my head right now...

1.  I made it through two consecutive days at school with only a few gray hairs and one massive paper cut.

2.  What do you say when someone new to RMH asks if your child (as in Caleb) has sensory issues (as in autism)?  Um, no, he's just really good at throwing tantrums.

3.  We have been blessed beyond measure by the generosity of so many people.  HUGS!

4.  I'm convinced that anything Mrs. Cain makes is bound to be good.  :)

5.  Not too many people get a glimpse of what their house would look like if they died.  I did.  It's not pretty.

6.  Caleb just renamed his favorite blanket "Peace and Quiet."  I need one of those too.

7.  While I usually love snow, the prospect of my family being split on Christmas (with Matt being at home, Caleb and me being here, and Abby being at MW) has me very upset.  I want us all to be together, in the same room, without gowns, masks, or gloves, on Christmas.

8.  I've had a few Debbie Downer days, which is unlike me.  This is all just really wearing on me. 

9.  I'm pretty impressed that I drove up here by myself in the dark for the first time and didn't have one bit of trouble.

10.  I miss my girl.  I haven't seen her since Sunday and couldn't go tonight because I have Caleb by myself and we're trying to protect him from the germs.  I can't wait for tomorrow!!

Just Sayin'...

...I really do have the cutest little girl in the world!

abby

Monday, December 20, 2010

A Big Girl Seat

Our sweet Child Life Specialist, Megan, brought Abby a bouncy seat! 

bouncy seat

Although I never got pictures of her with her eyes open, Abby loves her new view and is able to sit in it in her crib and see over the rails. 

bouncy seat close

Another plus is that it gives her practice sitting up, which she hasn't been able to do too much in the hospital.  The staff is encouraged that she is able to sit for so long in her bouncy seat without desating because that means that she should be fine for the car ride home!

spike
She had some rad hair that day, didn't she?!

Sunday, December 19, 2010

The King and the Knight

Caleb often calls himself the knight, protecting the king, queen, and princess from all evil.  Just wait until he sees the suit of armor, sword etc he is getting for Christmas!

So isn't it fitting that in this picture, the king and the knight are holding the hand of the princess?  It's as if they're telling her, "We'll protect you, Princess Abby!"

abby holding caleb and matt's hands

Saturday, December 18, 2010

Q & A

Here it is, folks:  the Q & A!

Are you going back to work or are you going to stay home with Abby?

This is a tricky question.  Abby requires 24 hour care and it doesn't look like we'll be getting 24 hour nursing assistance.  Therefore, we're going to have to work something out that allows me to take care of Abby.  Right now, I'm just working when I feel like I can (depending on our training schedule at the hospital, meetings, and how Abby is doing) and taking it day-by-day.  My principal has been nothing but supportive and is just going with the flow.  I have also truly appreciated the assistance the board of education has given to me, because they have really been working with me to figure this out!  I have a fabulous long-term sub who is doing a great job with very little help from me!  So far, I have worked one day and will hopefully be working the two days before winter break.  After that, it's still up in the air!

Because of Abby's rib abnormality, do you have to carry Abby a special way or be extra careful holding her so as not to injure her internal organs?

No.  Right now, we can hold and care for Abby just like a typical baby.  The fibrous tissue that is holding her rib gaps together is strong enough to withstand the little bit she moves around.  There was a time when we were concerned about her hips and were very careful when changing her diaper, but that isn't a concern anymore.  Down the road as Abby becomes more active, there may be limitations on what she can do because of her ribs.  We'll learn more about them from the spinal and thoracic specialists we meet.

What kind of clothes can Abby wear?

Because of the trach, vent, and various wires, snap-up sleepers work best.  The wires can go in between the snaps easily rather than having to come up through the neck.  I'm sure we'll get to a point where she can wear anything and we just adapt it, but right now I'm a big fan of the snap sleepers!

How is Caleb handling all of this?

Caleb is doing as well as can be expected.  He misses normalcy just like the rest of us, and sometimes his frustration is shown through his behavior.  We are all just trying to be patient with him and help him use words to share how he is feeling.  His medical playtime at the hospital has helped some, and he will have another session next week.  This one will be without us, so I am interested to see how he opens up to Megan when we aren't around.  We did have a conversation the other day where he mentioned that Abby wouldn't have any tubes when she came home.  As much as I tried to explain that what Abby has now is what she'll be coming home with, I'm not sure he really gets or accepts that. 

We're really just working on being able to spend quality time with Caleb while he's here (visiting the zoo or Science Center, doing the activity hour here, snuggling, reading books, etc.) and brainstorming ways he can be involved in Abby's care at home.  I'm trying to teach him the medical terms for some of the supplies she needs so that he can grab me things as I need them.  Maybe he'll grow up to be a doctor!! :)

Will you have help when you go home?

We need all of the help we can get!!!!  :)  Yes, we will have nursing care.  We're not sure of the amount of hours we'll receive and probably won't know until a few days before discharge (why, yes, that does drive the planner in me absolutely crazy!!)  I do know that we'll start out with 24 hour nursing care and then that will be tapered pretty quickly.  I'm hoping that we stick with at least 16 hours of long-term nursing care!  We will also have a respiratory therapist assigned to us who will come by about once a week to check the vent and assist in anything as necessary. 

Will you be able to travel with Abby?

Well...not anytime soon!!  That is more of a comfort thing for us than a medical reason--although it's not a good idea to be out in public too much with a medically fragile child during flu season anyway.  But with all of the "stuff" we have to bring with us for Abby, it's going to take us a while to work up the nerve to venture out of our house.  I'm thinking we'll start small...maybe just a ride down the driveway!  :)

Here's a list of what we'll take with us whenever we go anywhere:  the vent, a suction machine, a to-go bag that has all of our supplies in it (suction catheters, extra trach, gauze, sterile water, saline, etc.), a feeding pump, her heart/lung monitor, pulse-ox machine, an oxygen tank, the water heater for the humidifier, a regular diaper bag...oh yeah, and Abby!

I think that's it.  There may be more that I don't realize yet.  I'm hoping that her heart/lung monitor will have a place for the pulse-ox on it so that we can lose one machine, but it doesn't appear to be that way.

If it's a short trip of less than three hours and we time it right, we can leave her feeding pump at home.  Otherwise, it needs to go with us.

Are you starting to see why I'm panicing at the thought of taking her home???  Forgetting the suction catheters isn't like forgetting diapers and having to improvise or stop by Safeway.  They don't sell suction catheters at grocery stores!!

I'm hoping that we get comfortable enough to take her out, but it's going to take a while.  When we finally are ready, then I'll have to prepare myself for the stares.  But that's a different worry.

Tiny Toes

toe

toes

Thanks to Katie for the tip about using flickr to upload pictures!!

Friday, December 17, 2010

Waiting in a Yellow Gown

Today wasn't the happiest day at Mount Washington.  I came into Abby's room this morning to discover that she has been put on contact precautions, which basically means that she may have something others can catch.  Sooo, anyone that comes within three feet of her must donn a yellow gown, gloves, and a mask.

I was thinking my yellow gown days were over!  Not to mention that I hate that Abby can't feel my hands or see my face when I hold her.  It's just so impersonal!  But, I understand that this is what we have to do in order to keep it from spreading even more.

Our other piece of not-so-great news is that we will probably be here at least another month.  That's if everything goes well and there are no set-backs....which probably means more than a month.  We're just really starting to feel the stress of being apart for so long, so I think we're all ready to just be at home again...together.

But, we'll do what we have to do to ensure that our girl will be safe and truly ready to come home!

Thursday, December 16, 2010

Stream of Consciousness

Ah yes, another one of those!  I have been cooped up in my room all day because of the snow, unable to go see Abby because of the slick roads and my uneasiness about driving in the city in the snow.  I have been quite productive today though, which is a plus.  There was lots of researching about nursing care and medical equipment going on!  Lots of phone calls were made, several thank you cards were written, some cleaning was done, and a few forms were completed.  I discovered that I can in no way make snowflakes.  After three botched attempts, I labeled myself a failure and moved on.  I'm good at lots of things, but snowflake creativity is not one of them.  I'm getting to know a few other lovely people who will be here for a while as well.  It's rather sad when so many people come and go and you're still staying.  We've been here for eight weeks.  One of these days, it will be us packing up our car and turning in our key!!!  Matt and I were discussing whether we would stay at RMH for the night after our discharge.  My feeling is that unless we are discharged really late, I want to go home.  I love RMH and will always hold it near and dear to my heart, but I've been away from familiarity for waaaaaay too long.  It's just pitiful when you walk in your house and don't feel like it's yours.  I do want the staff members to be able to meet the special girl they've heard so much about, so we may stop by and pick up our last minute stuff before we head home.  We'll just have to see how it goes.  I drank a cup of hot chocolate today with marshmallows and it fit the weather perfectly.  I sipped it while I was editing the beautiful photographs we received from the photographer that took pictures while Abby was in the NICU.  In our mailbox today, Caleb got two stuffed toys and three goody bags.  I swear (except I don't) that this boy is going to have major RMH withdrawal when he gets home and realizes that there won't be huge breakfasts, or constant gifts, or treats, or activities every night, or an awesome playground.  I have a feeling there will be a big reality check here--especially since we had a conversation yesterday in the car where he told me that Abby wouldn't have tubes and wires when she came home.  Despite my best efforts to [gently] set him straight, I don't think he truly understands that Abby won't be coming home "free."  And so as I look out my window at the snow-covered roads that haven't even been touched by a plow, I hope that tomorrow I'll be able to wake up bright and early and head out to see my best girl!

To Whom it May Concern: Please Excuse My Absence

I'm sorry I haven't been around for a while!  Please allow me to explain:

I was at the hospital all day with Abby on my birthday and there's no internet access there...not even for the staff!  Archaic?  Why, yes, yes, it is!

Then Matt and I went to dinner with our good friends Jenn and Steven for my birthday.  By the time we got home, I was too tired to post. Plus, I had to get a good night's sleep for my first day "back" to work!

So, Thursday I went to work.  No, I'm not really back.  We're all just taking it one day at a time and I'm working whenever I feel like I might be able to.  So I worked yesterday, and will work the two days before winter break.  After that, I'm not sure yet!  Nevertheless, it was really nice to be back into some kind of normalcy and I have definitely missed my kids! (And yes, we did work--hard--on rise and fall climax maps and analyzing characters!)

I picked Caleb up and we high-tailed it back up to Baltimore for the RMH holiday party (which was fab-u-lous, by the way...but more on that in a different post!)  When we finally retired to our room, we spent the rest of the night looking at the photos from the photography session we had back in the NICU! 

So yeah, that's why I haven't been posting recently.  So sorry!

But I'll have you know that Abby did, in fact, handle my inexperienced trach change just fine!  I just kept telling myself that it was just like doing it on a baby doll.  Oh yeah, except that I don't hold the baby doll's life in my hands!!  It was really okay though, and I will feel a whole lot less nervous next time...maybe! 

My birthday was nice.  I spent the day rocking my girl and the evening with good friends.  My present is my amazing camera...which will be my present (and Matt's!) for a very looooong time!  Matt also made me a very cute calendar with lots of pictures of our family.  Thanks for all of the birthday wishes!

In other news:  Remember to get your questions to me by Saturday.  I'll do the post Saturday night.  I've gotten a few good questions and am ready and willing to answer them!  :)

In other, other news:  For some reason, Blogger is saying that I have run out of space to load pictures and have to purchase more space.  Blog hoax?  I'm not sure.  Any ideas?  I tried to delete a few old pictures that don't really matter, but it didn't seem to free up any space.  I would love suggestions, because I miss posting pictures!  In the meantime, you can go here to look at the professional pictures we had done! 

Tuesday, December 14, 2010

Hodge Podge

I enjoy when people hear our story and ask how in the world I stay so calm through it all.  God has given us so many opportunities to share with others!! 

I'm still floating on cloud 9 over being accepted into Model Waiver.  I really didn't think we'd get it and it's a HUGE weight off of our shoulders.  If no one else has insurance, at least Abby will!  (just kidding...we will have insurance...just maybe not a house...)  :)

Tonight will be the first night I've stayed "away" from Abby since her birth.  I'll be going home (you know, that tan house with the black shutters where I used to live?) tonight so that I can go to work tomorrow.  I'm pretty certain I'll call the hospital about 15 times while I'm gone.  Yes, their number is programmed into my cell phone.

Saturday night is far enough behind me for me to admit that I had a major meltdown.  It wasn't pretty.  I'm better now.  It had all just built up way too much and I just kinda lost it.  Poor Matt witnessed it.

I'm eating at The Cheesecake Factory tonight for my birthday with some good friends.  I can almost taste the cheesecake deliciousness.  Mmmmm.

Abby is quite possibly the cutest little girl I've ever seen.  Just sayin'.  Now that I have learned how to hold her with her head up by my shoulder (not so easy to do with large amounts of tubing in the way!), I proudly wear the Mom Badge Slobber Spot on my shirt wherever I go! 

Today will be my first time changing a trach.  Nervous?  Why, yes!  TERRIFIED!!!  But I'm too stubborn not to learn how to do it.  I will do this!

I've been toying with the idea of doing another Q & A post.  Any takers???  Send them my way, either by leaving a comment on this post or emailing me directly.  Get them to me by...let's say Saturday, and I'll answer them in an upcoming post.

Monday, December 13, 2010

Model Waver

We got some great news today:  our application for Model Waver has been accepted and Abby will be in the program!!

Now, I am fully aware that most of you are going, huh? right now.  That's okay.  I had never heard of it either before Abby was born!  I have gained a whole new vocabulary in the last two months!

Model Waver is a Medicaid program for children who have such big medical needs that they might not be able to go home without certain things in place (ie: private duty nursing and medical equipment).  It's pretty difficult to be accepted into the program because Maryland only takes 200 kids at a time....and once you're in, you're in until you don't need it anymore.  This is wonderful for us now that we're in, but not so great when you're on the waiting list.

Fortunately--or not so fortunately, depending on how you look at it--Abby was put pretty high on the waiting list because of her vent dependency. This is pretty much why we were accepted into the program.

So what's the big deal?  Medicaid, which is normally based on financial need, is given solely based on medical necessity through Model Waver.  It will help cover what our primary insurance doesn't--including private duty nursing.  With a typical person, a few copays or deductibles here and there isn't a big deal...but that's so not the case with Abby!  Getting into this program will be extremely beneficial to us!

We've been praying that we would be accepted into this program quickly, but we really didn't think it would be this fast!  That just goes to show that you shouldn't put limits on God.  :)

In other news:  Abby's red blood cell count is UP significantly from last week, which is a very good thing! 

Yay for a day filled with some happy news!

Welcome to Holland

I have heard this story several times over the last two months.  It is an interesting--and accurate--description of my feelings!

"Welcome to Holland"


by Emily Pearl Kingsley

"I am often asked to describe the experience of raising a child with a disability. To try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo, David, gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"HOLLAND?!" you ask. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy."

There has been a change in the flight plan. They have landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. Learn a whole new language. You will meet a whole new group of people you would never otherwise have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. However, after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandt.

But everyone you know is busy coming and going from Italy, and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that is where I was supposed to go, that is what I had planned."

And the pain of that will never, ever go away because the loss of that dream is a very significant loss.

However, if you spend your life mourning the fact that you didn't get to Italy, You may never be free to enjoy the very special, the very lovely things about Holland.

Sunday, December 12, 2010

Healthy Fear

That what all of the nurses say I have.  A Healthy Fear.

They tell me that they're glad I'm nervous because they'd be worried if I acted like all of this is no big deal.

I don't see it as a healthy fear. 

I'm TERRIFIED!

The realization that I will very soon--not really very soon, but very soon in comparison to a lifetime--be the primary caregiver for a vent-dependendent child with a tracheostomy and a gastrostomy tube hit me really hard this weekend. 

Don't get me wrong.  Matt has been wonderful.  He has done a great job of learning everything and practicing whenever he is here.  I know he'll be wonderful with Abby's care when he is home.

But we all know that his job takes him away a lot, and that leaves me. 

As the primary caregiver.

For a vent-dependent child.

With a tracheostomy and a gastrostomy tube.

Oh and not to mention being the mother of a spunky nearly four-year-old little boy!!

Like I said, terrifying.

Yes, I know most of the above statements weren't complete sentences.  I did it that way on purpose.  Call it a writer's prerogitive.

Tonight we had trach and g-tube training. We have already been checked off for g-tube care, but we needed to learn how to actually put it in (it's changed every 3 months).  That wasn't too bad.  The trach changes are another story!  We're fine with the trach tie changes, but putting the new trach in is very scary.  Let's just say I cried with fear.  Nope, we never even touched Abby! It was all done on a baby doll and I cried.  That's how scared I am about all of this!  Healthy fear.

What scares me the most is that I am directly in charge of maintaining Abby's airway.  If I mess up, she could die.  It's as simple as that.  This is why I didn't become a doctor or a nurse.  Well, that and the fact that science and I don't mix. 

However, I keep reminding myself of another time I was pretty nervous.  Back in college when I worked at a camp, I thought I might like to learn how to drive the boats.  One day of boater's training and getting the tomato-in-the-blender demonstration for what will happen if you don't watch the propeller was enough for me to say, nope!  Nevvvvvver mind!!  The director pulled me aside and convinced me to stick with it because the most cautious drivers are the best drivers.  Many, many trips out onto the river without kids later, I finally felt like I could do this....and I loved it!  That summer of [cautiously] driving kids around on the double banana boat and double tubes was awesome!

I'm not sure I'll ever be able to describe changing a trach as awesome, but I'm hoping that I will at least reach a level of comfort where I can do it without crying!

Saturday, December 11, 2010

Big Brother

On Friday, Caleb met with Ms. Megan, the Child Life Specialist who works with Abby.  Our goals for their session were for Caleb to be introduced to some of the medical equipment Abby has, to get Caleb to open up about his feelings about Abby's trach, and to allow Abby and Caleb to "play" together! 

It was awesome!  Megan is wonderful at allowing Caleb to explore at his own pace.  He naturally wanted to check out all of the toys in the room and pull everything off of the shelves.  Slowly, Megan introduced the idea of playing doctor.  She had a little doll with a trach and a g-tube.  Caleb was allowed to "feed" the doll through the tube just like we would with Abby.  He loved sucking the water up with the syringe!  Megan even pulled out the Kangaroo Bag that we will be going home with, since the way she is being fed now is slightly different than she will be at home. 

Megan also had all of the actual medical supplies we use with Abby:  suction, ambu bag, catheters, gloves, syringes, trachs, etc.  Caleb was allowed to touch and try out everything.  He even "suctioned" the water out of the cup!  (That ended up backfiring on us a bit because he announced later that suctioning Abby was now his job!)

Oops!

In his three year old way, Caleb lost interest pretty quickly.  He made it clear that he didn't want to talk about the trach or his feelings about it at all, which was pretty telling.  Megan was able to pull things in every now and then though, and I know Caleb absorbed way more than he let on.  I look forward to discovering just how much he actually got out of it over the next few days.

The best part of the session for me was being able to bring Abby out into the playroom!!!  This was the very first time that she has ever been transported anywhere without being on some kind of stretcher or isolette, so it was very exciting.  Matt and I even got to carry her to and from her room!!

It's quite a production taking her anywhere, and it didn't help that she was in the middle of a feed.  If she hadn't been eating, we could have lost the pole.
Caleb had a great time learning how to play with Abby.  I think he realized that he could do a whole lot more than he thought.  He especially enjoyed tickling her toes, pretending to talk with her on the phone, and getting her to grab the beads.
It was wonderful to see the two of them together in a more natural environment.  For once, Abby was at Caleb's level and he could do more than just lean over her crib.






 





Now that Megan knows Caleb a little better and has identified the touchy subjects, she is going to meet with him several more times throughout our stay so that she can help him become more comfortable with the trach.  I can tell she's going to be wonderful!

Friday, December 10, 2010

Learning

Matt and I have learned SO much since we've been at Mount Washington!  In the last week, we've demonstrated proficiency (it's like medical MSAs!) in trach tie changes, g-tube cleaning, feeding and disconnecting, giving medicines, non-nutritive oral stimulation, and range of motion exercises.  I've learned a lot about the ventilator, but still don't really understand it.  We've also watched a trach change while the respiratory therapist talked us through it step-by-step, so the next one will be up to us!  (Of course, the respiratory therapist will be close by giving lots of directions!)  We each have to do three trach changes before we are considered proficient on those because they are the most intense.

So since we've learned so much, why do I feel so overwhelmed?!?  I kind of lost it today when I thought about how I would ever be able to do all of this by myself.  We'll start out with 24 hour nursing care, but that will quickly be tapered to where we'll probably only have 8-10 hours a day.  Pitiful, I know!  When I consider how I'm going to be able to take care of Abby and entertain Caleb by myself when Matt is at work, I pretty much start hyperventilating. 

Who is going to tell me when it's time for her to eat?  What if I lose track of the time and forget to feed her every three hours?  She can't even cry to tell me she's hungry!  Who will help me troubleshoot when the feed isn't going through?  Who will explain the meaning behind all of the different beeps?  Who will help me untangle the tubes and wires?

Yeah...I really need 24 hour nursing care.  I don't have it nearly as "together" as I would like to think.

In other (but related) news:  I had a mini-meltdown yesterday because I couldn't get Abby out of the crib to hold her for all of the wires and tubes going every whichaway.  I thought I had refed all of the tubes (which requires unhooking, refeeding, and rehooking each one individually) so that she could be taken out, so I picked her up only to realize that her feeding tube was still through the rails.  I laid her back down, stopped the feed, refed the tube, and hooked it back up.  Finally, I was able to bring her out, sat down in the rocking chair, got comfy....and Dr. A came in to examine her.  Yes, she wanted her put back in the crib for this. 

I *might* have started crying at that point at the sheer frustration of the amount of effort it takes to hold my baby.  Sigh.

Thursday, December 9, 2010

It's the Most Wonderful Time of the Year...

I am learning this year that the holidays aren't about the pretty decorations that I used to slave over the day after Thanksgiving.  They aren't about expensive presents and trying to out do others in giving the best gifts.  They aren't about eating yummy food and watching the snow fall.  They aren't about the traditional Christmas shows on TV.  They aren't about the traditions you've worked hard to establish as a family.

This year, we won't be doing much of the above.  We've decorated our little RMH room as best we can, but it's nothing like the way I normally decorate my house.  The spending has been cut way back and our awesome camera will be our gift to each other for the next year of occasions!  While I'm sure the food at RMH will be nice, it won't be quite what we are used to.  I heard that it snowed a bit today, but I never saw it from the inside of Abby's little hospital room.  We never have time to watch any TV at all, much less entire movies.  We won't be doing many of our annual traditions because we just don't have the time, resources, or energy.

But that's okay.  Because that's not what Christmas is about.

Christmas is about a little baby a long time ago who changed the world forever. 

Christmas is about being with your family and celebrating Jesus' birth together.




Christmas is about giving to others, even in small ways, to show your love.

So we're okay with celebrating Christmas a little differently this year.  It will definitely be one we will remember, and I have a feeling we'll look back on this Christmas with very fond memories.

Wednesday, December 8, 2010

More Than Firefighters

The Baltimore City Fire Department came to visit the kids at RMH tonight.  They brought toys, played with the kids, and--most importantly--let them sit in the fire truck!

Each child got a stuffed fire truck, two tshirts, a fire hat, and a toy.  It was so great!  Caleb loved every minute of the entire thing...except when the firefighter got dressed in the full gear.  Then he ran and hid.
Thanks, BCFD!  You put smiles on the faces of lots of kids today!

Commenting

I have changed the comment permissions so that you do not have to sign in to leave a comment.  I know this was frustrating for some of you!  Hopefully, I won't start getting weid anonymous comments again.  If I do, I'll just have to go back to logging in.  Happy commenting!!  :)

For Your Listening Pleasure



33 Miles is one of my favorites these days.  I'm a big fan of the chorus and the line "When I'm shaking like a leaf you're the comfort that I need that melts my fears away."



This is also 33 Miles.  Told ya I liked them!



This is an oldie, but a goodie.  I still can't really sing it without a few tears.  It's just one of those songs.



Matt and I had an opportunity to see Carrie Underwood in concert a few weeks ago.  It's safe to say that both of us kind of lost it during this song.  Good thing we were in the back...




I have always, always loved this song.  "Let me know that you hear me.  Let me know your touch.  Let me know that you love me.  Let that be enough."

Tuesday, December 7, 2010

Chosen

During a recent conversation, I was explaining just how rare Cerebrocostomandibular Syndrome is.  In reply, the person I was talking to commented sarcastically:

And you're the chosen ones!

I paused for a moment before answering very sincerely, yes, we are.

We were chosen to be Abby's parents by a God who doesn't let anything happen by accident.

Before I was born, I was chosen to be the mom to a boy who is always ready to cuddle and a girl whose smile just melts my heart.

Before Matt was born, he was chosen to be the dad to a boy who loves to wrestle and a girl who's got him wrapped around her finger.

Matt and I had a conversation the other night reflecting on how God had been preparing us to be Abby's parents for many years.  I recalled being an assistant to a girl in high school who had a trach.  Working with her was my first experience in seeing how a trach doesn't make people different.  Matt commented on how he has always had a real sensitivity to children with special needs.  It's interesting to look back and see how all of this was perfectly orchestrated by God.

I am learning that God made me stubborn and independent because He knew that my fighting spirit would be essential for when no one else had hope for Abby.  God made Matt compassionate and loyal to give Abby a daddy who would stand by her through thick and thin and help her cope with all of the surgeries and therapy.  God gave Caleb my independence and Matt's compassion, making him the perfect big brother to a little girl who is going to need a protector in her life.

So yes, we were chosen.  And we're thankful that we were. 

That little girl has changed our lives forever.

Monday, December 6, 2010

Frustration

We were supposed to go back to Mount Washington today. 

Now, I know all about hospital time, but this was especially frustrating.  Nurses kept telling me that we were definitely going, but they just didn't know when.  At 4:00, the case manager finally came in to tell me that MW didn't have a bed today, so we couldn't go. 

Did it really take them that long to figure out that there were no beds available?!

It's not like I had anything else to do, and I loved the private bonding time with my girl.  I just wish I'd known so that I wouldn't have been waiting all day long to leave!

Hopefully we'll head out tomorrow, but there are no guarantees.  I'm not holding my breath!

Photo Shoot

 Now that Abby has a much bigger bed with lots more room, it's a little easier to take pictures of her.  I took the opportunity to do a bit of a photo shoot the other day. 

It just so happened that her flowered blanket matched perfectly with the striped blanket underneath of her!

 My Aunt Sue (who is not really my aunt, but my cousin by marriage...since they are my parents' age, we always called them aunt and uncle...I was extremely confused when I learned who they really were at age 8!) made Abby a very cute quilt.  I think she liked it too!
Doesn't she look like she is plotting something here?!  Seriously, this girl is a royal mess!  I am going to have my hands full in a few years when Caleb and Abby can work together...

Sunday, December 5, 2010

Rule Breaker

Remember my motto?


No ER visits!

We would only be going to the hospital for a scheduled procedure or surgery.

Yeah, well, that lasted all of 2 ½ days.

Matt and I went to bed early Saturday night because we were both just exhausted. When my phone rang at 10:30ish, I was extremely disoriented. It took about half a second for me to realize something was wrong though.

The attending physician at the Mount explained that Abby’s g-tube had fallen out. They weren’t sure when it happened, but thankfully it was before they started her continuous overnight feeds (being on continuous when it happened could mean that milk had gone out of her stomach and into other parts of her body, which would have definitely been bad!) Her infection was also looking worse, so she was being transferred back to UMMC.
Matt and I decided that I would go to the hospital and he would stay at RMH because Caleb was sleeping soundly and Matt needed to be awake for church in the morning. Of course, he would definitely come over if there was any change or concern.

I called the shuttle and headed over, getting to the ER right around 11:30, which is when the doctor said she should be arriving at UMMC.

Silly me! She meant 11:30 hospital time, which meant 12:30 a.m. I forgot.

Never fear though. I had plenty of entertainment while waiting for the ambulance to get here. After all, it was a Saturday night in a Baltimore City hospital. :)

As soon as Abby arrived, they ushered me back to her room where they took a whole bunch of information. The pediatric surgical team came to evaluate her and ordered a new antibiotic. An IV was started without too much drama (yay!) and then the surgical team put the new g-tube in. This one was a bit different than the original that had been placed at surgery. It took them quite a while to get the balloon to fill up and they were worried that the site was too inflamed, but they finally were successful.

By this point, Abby had successfully knocked her trach tubing off approximately 56 times in loud protest of all of this nonsense. The sounding of several different alarms because of rapid heart rates and breathing must have given her some sense of satisfaction as well, because it was quite noisy in her little room.

The reason is still unclear because we knew she’d be admitted from the start, but it took until 3:00 a.m. to get Abby moved to a room. It’s the whole hurry up and wait philosophy that is oh-so-familiar to me.

We were finally brought up to the pediatric floor where she was placed in the Intermediate Care Unit. If you’ve been following me for a while, you’ll remember that I was also in the IMC several times during my month here. (Flash back: absolutely no privacy, the woman to my left throwing up all night, the woman to my right screaming “Help Me!” every time she went to the bathroom, turning on the overhead lights every time they had to do vitals on any of us…) Thankfully, this IMC is not used as overflow and is actually quite nice! Abby has her own room with a bathroom, and the nurse keeps a very close eye on her. The privacy is kind of nice and I was able to sleep in the same room with her for the first time ever!

Pediatric surgery came to check on her this morning and they said that the site looked better and that she should be able to get her button tomorrow. The button is kind of a little port that is put in where you can just hook up the long tube when she is actually feeding. It’s much less noticeable than the big ol’ tube hanging out! We'll hopefully be able to be transferred back to the Mount after the button is placed, never to return to UMMC through the ER again!!!
I really don’t like late-night phone calls from doctors. They scare me.

And Abby and I will definitely be having a talk about the No ER Visits rule. She’s definitely going into time out for breaking that one… :)

Friday, December 3, 2010

Settling at the Mount

I swear I wrote this post once before, but it has disappeared.  It's a mystery...

Yesterday, Abby was transported to Mount Washington Pediatric Hospital.  The transport bed was soooo tiny and I felt a little clausterphobic just looking at it!  We said goodbye to our friends at UMMC and were off!

We drove to the hospital and arrived right after the transport team did.  Upon arrival, we were ushered in to our first family meeting with Abby's doctor, our social worker, and our case manager.  They went over tons of information and asked lots of questions.  It was good to share what we knew and have them give feedback in a few areas (read:  insurance!)

WE LOVE OUR DOCTOR!!  Dr. A. is extremely knowledgeable and has a great sense of humor.  That's just not a combination that we've found in too many of our doctors so far, so it's kind of refreshing.  She is very personable and has stopped by just to visit Abby several times over the last two days.  Dr. A even gushed about how cute she is to a new fellow who was touring the unit today.  Anyone who talks about my daughter's beauty is okay in my book!

Dr. A is also cautious and decisive, which I like.  Wishy-washy doctors who act like they aren't really sure what they should do just don't give me a lot of confidence!  Plus, Dr. A. seemed to recognize that at this point, we know more about Abby than anyone there.  She included us in the decision-making and seemed to truly value our opinion. 

Imagine...the parents may actually know something!! 

gasp!

Today, we met Abby's therapists:  OT, PT, the SLP, and CLS***.  You know what I looooove about this hospital???  She has exactly one of each!  No more explaining to the new PT person what the last one did or didn't do!  Unless someone is out sick, Abby will see the same people every day.  Yippee!  There's definitely something to be said for consistency.

***Occupational therapist, physical therapist, speech-language pathologist, and child life specialist.

The bad news of the day: Abby's g-tube site is infected.  Our cautious and decisive doctor took one look at it and said she wasn't going to wait and see if it got better--she was starting a round of antibiotics.  Sounds good to me! 

Because of the infection and the pain it caused, Abby wasn't in the best of moods today.  Lots of people came to evaluate her for various things and she just wasn't having it.  I held her a lot in between evaluations to try to soothe her and settle her down (such a sacrifice, I know...it's such a pain holding that gorgeous little girl!)  :)  Abby didn't even tolerate the CLS and she was just playing with her!  Thankfully, I was able to calm her down and get her to take a good nap in the afternoon.  When she woke up, she was in a much better mood and the CLS came back to play again.  It was much more successful the second time around!

We are so glad that we are settling at the Mount.  We (I) were definitely hesitant about coming--maybe it was the fact that I really don't do change well because I have slight issues with control and have had too much change in my life recently fear of the unknown--but we're really liking it now that we're here. 

Our one complaint?  BABY JAILS!  I really hate these cribs.  They extend 6 feet in the air (some even have covers!) and just look like prison cells.  Plus, they're humongous.  Abby is a tiny girl in this monster bed and it's just ridiculous. 



But, I guess it's really saying something if my biggest complaint is the type of bed she's staying in.  :)

In other news:  I took some more Christmas pictures today of my girl using her real stocking.  Look for them in the next few days.  :)  (She promptly peed all over her Christmas outfit, but at least she waited until after the photo shoot was finished!)

Thursday, December 2, 2010

Sassafras

My little girl is sassy!  I'll tell you what, she's got more personality in her big toe than some adults I know!  I would love to tell you a little bit about my Abby Girl.

For starters, Abby is not particularly fond of the Speech-Language Pathologist (SLP) at UMMC.  I'm not sure why, because she's a lovely woman named Melissa who believed in Abby from the start.  I think it may have something to do with the fact that Melissa puts her gloved fingers in Abby's mouth all of the time!  Whatever it is, Abby basically cries the entire time Melissa works with her.

Anyway, the last time Melissa came to visit, Abby was wide awake.  As soon as she heard Melissa's voice, she shut her eyes tightly and pretended to be asleep in hopes that Melissa would go away.  Melissa stopped talking and Abby peeked to see if she was still there!  Melissa spoke to her and WOOP, the eyes closed again.  That stinker!  Melissa didn't fall for it though!

Another thing Abby likes to do is dirty up a brand-new diaper as soon as possible. I guess it's kind of like clean-sheet day...except instead of snuggling down under the covers, she turns beet red and poops.  It happens every time I change her.  Every time.

At times, Abby remembers that this huge tube that is in her neck isn't really supposed to be there and she tries to pull it out.  She has done everything to get rid of it and is often successful in knocking the tubing off of the trach.  She enjoys playing this game with the nurses who have done particularly mean things to her and thinks it's pretty funny to make the alarm go off every five minutes with disconnected tubing.  Several nurses have tried to tie the tubing to the trach to keep Abby from knocking it off, but that doesn't work!  When there's a will, there's a way...

My girl loves to be held and snuggles right on up to you when you hold her close.  While it's a little more challenging to hold her with tubes going every-which-a-way, I have gotten to where I can hold her quite naturally and almost forget she's connected.  I love our bonding time, especially when she studies me with those big dark eyes of hers.  *Melt my heart!*

I have a certain noise that I make with my tongue to get Abby's attention.  I guess it's a bit of a cluck.  Abby definitely knows it as my sound and will open her eyes when she hears me.  Matt tried to trick her one night when he was visiting her alone by making my sound.  Abby's eyes flew open and she looked for me, but started crying when she saw Matt.  Get your own sound, Daddy!  That's Momma's sound!

Abby's favorite word is monkey.  She smiles really big every time I say it.  It's so cute!!

When I talk to her, I often tell her about what Caleb has been up to, who has come to visit, where we went recently, etc.  It's just the normal stuff that I always did with Caleb as well.  (Matt and I are firm believers that if you want your child to be an early talker with a good vocabulary, you have to talk to him/her in a normal way modeling good vocabulary!  There's no baby talk at our house, folks!)  You should see the way Abby studies me while I'm talking.  It's like she's really taking it all in and comprehending what I'm saying.

My Sleeping Beauty often "cuddles" with her trach tubing by wrapping both hands around it and nuzzling it while she sleeps.  I have informed her that this is weird and that it is not natural to have tubes coming out of your neck, but she still does it.  I guess she doesn't know any differently, so it is normal to her.  Still, I think a teddy bear or a doll is a little softer...and cuter!

So that's a little glimpse of my girl. Since many of you won't get to meet her for quite some time (we're not going to be venturing out in public too much until flu season is over and we figure out how to make her "portable!"), I hope you enjoyed "meeting" Abby.  She's quite a character! 

I think she's going to take after her brother....Lord help us!

Thankful Thursday

Matt and I are incredibly thankful for the many people who have come alongside us to show their love and support.  While we never imagined ourselves in this position, we have been amazed with how God has provided for us.  The thoughtfulness behind the cards, emails, and gifts has been so sweet and we can feel the prayers being said on our behalf.  Abby is one loved little girl! 

Thank you all from the bottom of our hearts.  That seems to be a miniscule way to show our appreciation, but we truly are very thankful for all of you!