Life as a Leach

Today, I learned more about th is 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 ...

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.

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...

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...

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 Sep...

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.

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.

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!

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 cu...

...With our family of FOUR!

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 *  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 *  A take-along Thomas train track with trains I also made Caleb a special doll that is just like Abby, complete with trach a...

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!

A Merry Christmas! Love, The Leach Family

*  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 th...

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 t...

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 ...

...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 ...

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, ...

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

Our sweet Child Life Specialist, Megan, brought Abby a 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.  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! She had some rad hair that day, didn't she?!

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!"

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 ...

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

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 gir...

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 ...

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 ...

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 a...

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 accepte...

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 ...

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 mo...

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:...

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 ...

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 les...

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!

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!!  :)

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."

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 sensitivit...

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!

 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...

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 de...

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 ...