Friday, June 28, 2013

Plodding Along

Feeding therapy has not been as drastic a change as I had hoped it would be. As is Abby's way, she takes four steps forward and ten steps back. While drinking milk was "easier" for her than eating solids before we started Feeding Day, it has completely reversed now. She eats solids like a champ and doesn't seem to really care about what you put in her mouth. Drinking the Pediasure is becoming a major battle, complete with lots of negative behaviors and pleads to, "Put me in time out!!" (Not cool...not cool at all!)



So we have a new plan. Our therapist decided to back way, way up and only give her two ounces of milk during the meal. She saved the other two ounces for her to drink in the playroom. She also has started a more immediate sticker incentive where she gets a sticker for every good sip she takes. That sounds ridiculous, and in some ways it is! But it seemed to work today at lunch and we're hoping that it will be a very short-term solution to help her get back on track. Until then, we may have to put some Pediasure in the tube. :( It will kind of depend day-to-day.


On a more positive note, they are starting to have me join the afternoon snack and feed her some. Abby likes this and has adjusted very well to having me in there. She eats well for me during the evening snack before bed, but dinner is a different story. We think it's because she is so full from 3 big meals during the day (afternoon snack is really just another meal), and negative behavior is the only way she can tell me she is full. We're looking to cut her afternoon snack to more of a real snack in hopes that that will help.


Sigh. She was doing really well, and now all of the sudden she's not. It's a little frustrating, but that's the way it is with a feeding disorder. She'll get there.



Tuesday, June 25, 2013

There Are Good People in This World!!!

Yesterday, a car hit my parked car while trying to pull into a parking space at MW.  The door and back quarter panel do not appear dented, but there are a lot of deep gashes that will rust if not repaired.  Although she certainly could have gotten away with it, the sweet woman left a note with her contact information.  When I called her, she was very apologetic and told me that she would never hit a car and not leave a note.  Praise God for some people who still have integrity!!

The claim has been filed and my van will be fixed as soon as I can get it back home to our local auto body shop...the same shop that fixed it so wonderfully just a month ago.  :(

So, it's an annoying problem, but it definitely could have been much worse!  I'm thankful for the woman's honesty, because there aren't too many people like that these days.

Teresa Bartlinski

I'm not sure if any of you have heard the story of Teresa Bartlinski.  A friend of mine shared her blog with me a year or so ago, and I've been following her story ever since.  Her mom also has a Facebook page for more immediate updates.  Teresa was adopted from China and was in need of a new heart.  Her time was running out when a donor call came.  They left their Baltimore home and headed up to CHOP, which is their cardiac hospital.  Sweet Teresa got her hero's heart, but there have been a lot of complications--including going into full cardiac arrest.  She has been on ECMO for almost a week now, which is basically life support for your heart.  The longer she is on ECMO, the bigger the chance of brain damage or stroke. 

Her surgeons operated again yesterday to try to enlarge the left atrium pulmonary veins.  It was successful, but she is having a lot of bleeding and the doctors still haven't been able to get her off of ECMO.  They are hoping that a few days of rest will give her heart time to recuperate and be ready to work hard again.  Please pray for this sweet, sweet family and take a few minutes to read their blog or Facebook page.  Teresa's parents are such loving, dedicated parents.  My heart breaks for them to have to see their little girl this way. 

Monday, June 24, 2013

Therapeutic

Eating is really hard for Abby.  I liken a day of feeding school for Abby to a day of boot camp for me.  It's not that she is just refusing to eat or is picky.  It takes about 5-6 swallows per toddler spoonful of food.  That's about half the size of a teaspoon.  All of her anatomy in her throat/airway is just a little interesting, which makes swallowing hard.  She's safe and she can do it, but it's not easy.

So imagine her delight after a particularly hard day at "work" when she came outside and was greeted by these two friendly faces!



Pets on Wheels is a local organization that provides therapy animals to places like nursing homes, hospitals, and RMH!  Abby absolutely loved Lilly, the black dog she's so sweetly posing with.  :)  Lilly was quite a lover too--so cute!

Although Abby didn't think as much of Wasabi (named because "She's hot stuff") the tortoise, I thought she was awesome!!  For kids with allergies to dogs and cats, a hypoallergenic therapy animal is a great solution! Plus, Ms. Wasabi was dressed in a custom-made dress and ate pretzels.  That about did it for me.  I was sold!

While watching the kids play with these sweet animals, I was once again struck by the beauty of RMH.  Here, they aren't kids with chronic illnesses or kids in wheelchairs.  They aren't kids with tubes or pins coming out of their bodies.  They aren't kids with cognitive delays.  

They're just kids...playing with animals.  

And it's a beautiful thing to watch.

Thank you, Pets on Wheels, for sharing your furry (or scaly) friends with us.  It couldn't have come on a better day!



Sunday, June 23, 2013

Family Meeting

This post has had several drafts...one was pretty venomous...one was slightly more mild, and this one was written several days after the initial contact.  For some reason, Blogger wasn't letting me publish my first two drafts.  I'm pretty sure it was God telling me to calm down and gain some perspective.  Consider this version fairly tame and edited.

We had a family meeting with Abby's therapists on Thursday to discuss Abby's progress in the feeding program.

Feeding-wise, Abby is doing really well.  She is eating a lot more volume, and is also more willing to explore different textures.  The milk intake is becoming more consistent and normalized within the meal (rather than constantly chasing after her to drink her milk!).  She is starting to gain weight and has now gained 1 1/2 pounds since she has been here.  The nutritionist changed her formula so that she is now drinking a higher calorie Pediasure.  This way, she won't have to drink so much, which is a whole lot easier!  She's still getting about 70% of her calories from Pediasure, but at least it's by mouth and not by g-tube!!!

I did share the concerns I have about the lack of the structured, language-rich environment of the playroom that was vividly described to me pre-admission.  The kids spend a lot of time watching TV or playing on the iPad while in the playroom, and that's not the best way to stimulate any child's development---delayed or not.  Note that she is basically in this room from 9-4, only to leave 3x for meals and an occasional therapy.   It's safe to say she spends at least 5 hours a day in here, which should give plenty of time for wonderful pre-school learning activities that focus on communication, fine motor, and gross motor skills.  Not so much.  It is more of a holding tank than anything else.  In a hospital that specializes in developmental delays with dozens of wonderful therapists (we really do love them!), this really troubles me.  I've been reminded that the playroom attendants are not therapists or teachers.  Yep, I'm well-aware.

I'm trying to focus on the positives of the program and make the best of the situation, but the playroom is very frustrating to me.  I'm not sure that voicing my concerns did anything but make them darken the PAIN label on Abby's chart, but oh well.  She's where she is today because I spoke up and didn't just let things happen.  And we can't afford to gain ground in the eating at the expense of other areas of development.

Wednesday, June 19, 2013

You Know You're Getting Used to the City When...

......You put an address in your GPS to a place you've never been and realize you know right where that is.

...You ignore the directions your GPS gives you and go a different way...and you're right about it being quicker!

...You ignore the directions your GPS gives you and go a different way...and you get lost, but don't freak out.

...You hit traffic and simply turn off onto a side road, knowing how to get back to your original route.

...You realize that the Target a therapist gave you directions to is actually quite sketchy, and you still go in.

...You get offered a ride at said Target by a middle aged sketchy man, and you simply say "No, thank you" and and continue walking calmly to your car...and lock your doors immediately.

...You are certain that Baltimore parking spaces are significantly more narrow and accept the fact that at least one tire will be on or over the line because you don't drive a Smart Car.

...You fuss at the guy who just cut you off because he didn't realize that the 2 left hand lanes are turn only, when you did the very same thing for approximately the first year you traveled those roads.

...You recognize the homeless people that frequent your route, and even make up names for them.

...You have a favorite parking space in the parking garage.

...Your usual route to your home-away-from-home is blocked, so you choose one of the three other routes you know.

...You walk by a drug deal on the way to the parking garage without thinking anything of it.

...You know at what location on your route the cars begin to park on the street, and switch to the middle lane to avoid them before you even see any.  Then you chuckle at the guy who didn't know to do that and is now slamming on his brakes, because you've been there.

My, my, how things have changed!  Here's to two-and-a-half years of "getting used to" Baltimore!

Tuesday, June 18, 2013

Behavior

Abby is starting to get used to the routine of feeding school, which is both good and bad. She is talking a lot more and is comfortable with most of the therapists now, but she is a little too comfortable, if you know what I mean.  She is starting to really refuse food and thrash around in protest.  This caused her to be put in time out a total of 6 times today.  :(

She did manage to drink all of her milk and at quite a bit of food on top of it, but the behaviors aren't fun.  Abby had a big tantrum at my cousin's house on Monday...one of the worst we have had in a while.  Thankfully, my cousin's son also went through the same feeding program, so she was very gracious and understanding!

I know this is just another step in the adjustment period, and I'm glad that she is talking and eating more overall.  She'll get over this too.

I'm a little concerned that she hasn't gained any weight--in fact, she has gone down slightly since we started here.  Considering that she is now on Pediasure 1.5, which is 45 calories per ounce as opposed to 30 calories per ounce in regular Pediasure, this is an issue.  Never mind that she is eating way more than she did before.  We think that it could be because she is so active now--playing hard all day, playing hard at RMH, running around outside on the playground, walking to and from the parking garage 2x a day, walking all through the hospital 2x a day, etc.  She is definitely more active here than she is on a typical day at home.  We have a family meeting with the doctors/therapists/nutritionists on Thursday, so I am definitely going to address it then.

She hasn't begun to get any of her regular speech or PT therapies yet, so that is on my list of things to ask about tomorrow.  She hasn't even been evaluated yet for speech--to my knowledge--so I will definitely be hounding them about that.  I have to say, I really don't like not being in the "know" when it comes to her therapies.  One of us is always there for Abby's therapy and we know exactly what our therapists worked on and what we need to continue with at home.  Here, I don't even know when she is being taken for therapy, never mind how she did.  I had such high expectations for her development this summer, but those hopes are fading a bit...

Overall though, this week is definitely an improvement over last week!  Anything is better than last week!  I haven't even cried at all these two days.  :)

Sunday, June 16, 2013

Happy Fathers' Day!




We love you, Daddy!



Saturday, June 15, 2013

Relaxing Day

I decided last night that Abby and I needed a fun, relaxing day after the stressful week we have had.  We got tickets from the front desk for the zoo, packed a lunch, and off we went!  It was a wonderful day!  The nice thing is that Abby doesn't have any expectations, so we don't have to see every single animal.  I hit the ones that I knew she would like, such as the elephants, giraffes, chimps, and lions, and we just took our time and strolled around.  It was good exercise for me, and Abby loved rolling in her stroller, watching the world go by!


Abby got a big kick out of this bird's nest...

...but hated the open-air one!  Go figure!

Although she hasn't told me, I think her favorite part was probably brushing and petting the goats.



Abby LOVES elephants.  Besides dogs, I think they're her favorite animal.  She would ride one if she could.


Caleb likes giraffes, so we took a few pictures for him.




The polar bear was RIGHT up against the glass...about as close as you're going to get to one.  It was SO cool!  Abby decided that this big guy was a little too close to her, but I did manage to get a picture before she ran back to me!


A few other animal sightings...




I just lover her little pose here!!

I even actually got a picture of both of us!  If you know me, you know that I don't get family pictures when we are out and about because I'm terrified that someone posing as an upstanding citizen is going to pretend to take the picture and then run off with my camera.  I decided that I really wanted a picture of both of us (even though I definitely did feel like the single, teenaged mother today...), so I stood around the elephant habitat for a ridiculous amount of time, waiting for the "right" person to come along.  My eyes settled on an elderly man, with his wife and slightly unsteady on his feet.  Surely I could outrun him if he tried any funny business, I reasoned.  The story has a happy ending, because the kind man simply took the picture, handed my camera back to my trembling hands, and went along his merry way.  Sheeeeewww!


After a fun day at the zoo, Abby fell asleep on the way home and stayed asleep for four hours!!  I'm now paying for that four hour nap, as it is 10:26 and she is still awake.  *sigh*

I'm thankful for fun, stress-free days like today.  I wish my boys could have been here, but it was nice to have some one-on-one time with the girl that didn't center around eating!









Friday, June 14, 2013

Feeding Day Program: 10 Thoughts About Week 1

1.  This is going to be a lot harder than I thought it would be.  I really wasn't worried about this summer.  Now I am!

2.  This is proving to be harder on Abby than I thought it would be.  Abby went basically mute for the first 3 days, probably from the stress of all of the sudden changes, but she appears to be easing into everything and has started talking again.  She is definitely more like her old self, and I am SO glad!  It was really hard watching her like that and I was so fearful that she was going to regress in speech when we have worked so hard to get her where she is!

3.  Potty training when you're not there all day is super hard!  She's being taken a few times during the day, and then I'm on her all evening.  I'm still not real pleased with the playroom staff's approach or lack thereof to potty training, but this is an improvement over Wednesday when I was told that they had too many kids to be dealing with going to the potty.

4.  Abby definitely responds best to the talkative, bubbly personality when it comes to eating.  She loves when people interact with her and the toy she is playing with (usually the iPad).  The ones with soft voices and even-keeled personalities don't do it for her.  I have also learned that "Big Ahhh" sips are extremely varied, depending on the therapist. Some cheer if she even puts the cup to her lips, and others make her take a gulp (like we do).

5.  She loves the "Talking Friends" apps!!!  The dog, Ben, is her favorite.  She will talk and play with him the entire meal, and it's really motivating for her.  Some of the therapists think Ben is creepy because he repeats whatever you say in a weird voice, but Abby loves it!  We've downloaded them onto my phone so that she can play with Ben at every meal.

6.  I've been pretty impressed with her willingness to try new foods, considering that she has had trouble at home with that.  She has eaten a good amount of chopped up spaghetti and meat sauce, several bites of a cream cheese sandwich, and a few (tiny) bites of mac and cheese.  This is all in addition to her regular purees and lumpy purees.  She is downing yogurt like a champ now, so I went to Whole Foods and bought the full-fat yogurt--33 calories per ounce!!  (That's more calories per ounce than her Pediasure, so I was super excited!  It's hard to find full-fat yogurt in regular grocery stores because most people want non-fat!)

7.  I successfully left Abby at the hospital for about 2 hours today...and we both made it!  :)

8.  I met another family here at RMH whose son is doing the feeding program at KKI.  He is about the same age, and they got along fabulously after bonding over both having "tubies."  :)  Unfortunately for Abby, her boyfriend is inpatient at KKI because his health conditions require him to be closely monitored before and after feeds.  He gets to come to the House every now and then though, so they'll get to see each other.

9.  At the end of week one, I wouldn't say I have learned much about how to feed her.  They are basically doing the same thing that I have been doing (and I feel like I'm the one teaching them, sometimes!).  I think that I will learn from them in the coming weeks, but right now we're still in transition.  But I have learned what kinds of food to feed her to get the most calories per bite.  We're starting to stray away from the Gerber stage 3 foods and focus more on yogurt, cream cheese, mac and cheese, pasta, etc.  Seeing different kinds of food to offer to her has been helpful.

10.  My daughter will be destined to live a life devoid of fruits and vegetables, unless they are covered in cheese or dip.  Their philosophy is not to waste time with those foods because they are such low calorie.  The vegetarian in me is very sad about this.  I still give her fruit.  Shh!

I'm excited to have my girl to myself for the weekend.  I've really missed her, but I think it will be especially hard next week when I don't have either one of my great kids during the day.  I had Caleb to keep me occupied this week!

Soccer Star!

I was sooooooooooooo busy these last few weeks between work, the staff development I am helping to lead this summer (yes, I know, I'm crazy!), packing, and just...life, that I haven't shared anything about Caleb's soccer experience!

While I'm not sure that soccer scholarships are in our future, he seemed to enjoy learning the game.  He has decided he doesn't want to play in the fall, but we may see if we can get him back on a team in the spring.  Matt has also been talking to him about t-ball, so Caleb may go that route.  I don't really care, as long as he is active.

What made the season most exciting was that we had a really good team!  We only lost to one team during the regular season, and we beat them during the first round of the tournament.  In fact, despite Caleb's best efforts to score for the other team, Caleb's team won the tournament for the U6 division!  He was SO proud.  SO, SO, proud!

Great job, Caleb!  We are proud of you!  Just keep focusing on those academics, Buddy... :)



Thursday, June 13, 2013

Looking Up, Looking Down

Things are looking up, and looking down.


Looking Up...
* Abby ate a lot more yesterday.

* We had great therapists for all 3 meals, so she is beginning to talk more. They are also finding out which iPad apps she really loves, and one of them is an app that repeats what you say in funny voices. It's motivating her to eat and talk!

* Last night at RMH we all really enjoyed playing with the staff from Under Armour. One of the women played in the dollhouse with Abby and she just ate up the attention! Caleb did too, because one of the guys played computer games with him. :)

* All 3 of us slept all night, which hadn't happened yet.

Looking Down...
* Because she is eating a lot more, she threw up a ton last night. Her little, tiny stomach just can't handle more than 6 oz at a time. I'm hoping that this will be enough for them to finally schedule the Upper GI I've been requesting and get her on some medicine. I really do think it will help.

* The playroom staff (where she stays between meals) has refused to take her potty during the day. They said that they have 11 kids and don't have time for that. I have asked that they just take her whenever they are taking another little girl. That hasn't happened. They don't even keep her in the Pull-Ups I bring for her--just diapers. I've now asked if I can come get her every hour and a half to take her potty myself, but they said no. Now, apparently they want to "talk" to me about the purpose of this program. I am so angry. She has to be potty trained in order to go to preschool in September, and they won't even take her to the potty. The poor kid is going to be so confused when all day they are telling her to go in her diaper and I'm actively putting her on the potty all evening. Not a happy momma...

More positives than negatives, and I'd much rather be dealing with this than a life-threatening airway issue. If fighting over potty training is the worst I have to deal with, I guess I will take it.



Thankful Thursday

This Thankful Thursday goes to our wonderful RMH!  All of these pictures were taken on Sunday, just a few hours after we arrived.  Just take a look at the joy on their faces!









I hope you know by now that RMH offers so much more than a place to stay.  They do offer a home-away-from-home.  But more importantly, they offer fun, and laughter, and comfort, and hope, and community, and family.  I love this place.  

Tuesday, June 11, 2013

Servers, Streakers, and Stress

My lack of posting is completely related to internet issues.  RMH has pretty patchy internet service, so I can't get a signal out in the kitchen.  The only time I had to blog the last few days was after I put Abby to bed, and typing while she is trying to fall asleep in the bed four feet away doesn't work so well.  Since I can't get on the internet outside my room, there was no blogging to be had.

I thought I'd be able to work at the hospital while she was away from me today, but you have to have a special passcode to get on that can only be done through IT.  Although a therapist called three times for someone to get me set up, no one ever came.  This is especially not good when it comes to the amount of work I have to do (yep, still working...on the staff development workshop I've mentioned a few times).  I was really counting on doing it during the day while Abby is at feeding school, so hopefully I can get the internet issues worked out tomorrow.

Yesterday was pretty bad.  Abby was uncooperative with eating, she cowered in a corner in the playroom because she was completely overwhelmed (lots of screaming kids, some with suspected sensory issues, and even one streaker...), and I was just really concerned about the medical emergency stuff.  In addition, Abby lost 3 lbs since April when she was last seen by the feeding clinic.

Needless to say, I'm pretty sure there's a big note written in Sharpie marker in the front of Abby's chart that states, "Mother is emotionally unstable."  I pretty much cried the entire day.

But today was a lot better.  They have put some emergency protocols in place to set me at ease, the playroom seemed to have a lot more structure today (she even came home with a cute craft), Abby reportedly interacted with the kids and played on the playground (I received lots of reports from multiple therapists--probably because of the note in the chart...), and Abby ate more than I thought she would from a stranger.

The biggest issue was that she refused to take a nap, choosing instead to apparently jump and dance on her cot.  This caused a problem during her last feeding time, because she totally fell asleep during the session and barely ate anything.  That left me to attempt to get 10 more ounces of milk into her this evening, which just didn't happen.  Matt managed to get 6 in, which is quite respectable.  Sadly, 4 had to go in the tube. :( This is frustrating, considering she's been tube-free pretty consistently for a month.  I kind of felt like feeding therapy would increase her intake, not decrease it!

But I know this is a huge transition for her...not only with joining a feeding program, but also with being at RMH.  Nothing is "normal" for her right now, so she's struggling with a whole lot of changes.  The poor thing looks really stressed a lot of the time, and I've especially noticed the stress in the amount of expressive language she has...which is little to none right now.  :(  She is so timid and anxious that she really struggles to talk to anyone right now.  And I don't have too many times just the two of us to just get her talking.  I really didn't consider the emotional toll this would all have on her.  So I'm really, really glad that we have some fun activities at RMH to bring a smile to her face.  She definitely needs some stress-free fun right now.

Prayers for all of the transitions are greatly appreciated!!  I am hoping that she will get used to having so many different people feed her and will start to eat more...soon...really soon...

How CCMS Moms Are Chosen

I was looking through some old blog posts for something else when I came across this.  It was posted in early November, just a few weeks after Abby was born.  It was fitting then, but I love it even more now!  This was originally written for preemie moms.  Although I am one of those too, I found it fitting to make it into a CCMS story.

~*~How CCMS Moms Are Chosen~*~ 

(Erma Bombeck) 


Did you ever wonder how the mothers of CCMS babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. 

"Armstrong, Beth, son. Patron Saint, Matthew. 
Forrest, Marjorie, daughter. Patron Saint, Celia."

Finally, he passes a name to an angel and smiles. "Give her a baby with CCMS." The angel looks shocked. "Why this one, God? She's so happy." 

"Exactly," smiles God. "Could I give a CCMS baby a mother who knows no laughter? That would be cruel." 

"But does she have the patience?" asks the angel. 

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make her baby live in her world, and that's not going to be easy." 

"Yes, here is a woman whom I will bless with a child less than perfect, in the world's eyes.  She doesn't know it yet, but she is to be envied. 

She will never take for granted a spoken word. 

She will never consider a step ordinary. 

When her child says "Momma" for the first time, she will be witness to a miracle and know it. 

I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. 

She will never be alone. 

I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." 

"And what about her Patron Saint?" asks the angel, his pen poised in the air. 

God smiles. "A mirror will suffice."

Sunday, June 9, 2013

Bedtime at RMH

Bedtime at RMH is proving to be "fun."  We participated in tonight's activity hour, then I gave Abby a bath.  We worked a little more on drinking milk (she didn't finish tonight....just too much going on :(  ), and then it was bedtime.  That was at about 8:00.

Note that we are in the same room.  Abby sleeps in a twin bed and I have a double bed, but we are in the same room with nothing in between us but a small night stand.

I brought the baby monitor because I thought it would a good idea for me to go out in the kitchen while she was falling asleep, but the wifi doesn't work in there for some reason.  Just sitting at a table in a kitchen for an hour won't be too exciting, so I thought I'd just stay in here in the dark with my laptop.  Hmmmm.

She has done everything from remind me that she got hit on the shoulder--two weeks ago--, to beg me to sleep in her bed with her--umm, not a chance!--, to sing, to say "I like the Ronald McDonald House" over and over (quite cute, I have to say!), to tell me she is going to watch cartoons, to tell me she is all done sleeping and she wants to get up.

The worst part is that she is so darn cute!!!!  I have a really hard time standing my ground with this one.  But I'm doing it, because giving in today will make the next days even harder!

It's now 9:28.  Do I dare say that the girl is close to dreamland?  I don't want to move or anything until I know for sure.  Oh, wait, nope.  She just announced that she has a stinky diaper.  (false alarm on both accounts.)

I'm going to have to try another approach tomorrow.  Maybe I'll just read a book in the kitchen while I'm waiting for her to fall asleep!  Obviously, being in the same room is not working.  (I thought she'd fallen asleep again, but she just yelled out, "Oh no!" for no apparent reason.  I'm trying not to respond to her.)

We're Here!

We got to RMH around 9:45 this morning, which is no small feat for a mom packing up 8 weeks' worth of stuff in the car, getting 2 kids (and herself) ready, and feeding a little lady who is not interested in eating!  Matt helped quite a bit before he left for church, and we were able to make it out of the house by my goal time of 8:00 a.m.!

Although I don't usually let the kids watch movies when we go to Baltimore (we usually have a 2 hour rule and Baltimore is just under two hours!), I figured that this was special.  I put in the Muppets and we had a lovely singalong and peaceful ride.  Caleb has been singing, "We Built This City"  most of the day.  :)

The reason we got here so early when we couldn't actually check in until 2:00 is because Roaring to Ronalds was at 11.  This is a super-fun annual event that includes lots and lots of motorcycles!  We were able to be at this event right after Abby was born, and Caleb absolutely loved it!
We got here and had planned to ride in the parade in the RMH shuttle, but there was a little mix-up and they ended up having too many families on the list for the bus.  We volunteered to just hang out here and cheer as the parade came in.  It worked out very well because the kids played on the playground and in the playroom, and then had a grand time when their friends E and S came in (with their mom and my friend, L!)  I don't think they missed actually being "in" the parade at all.

When the House got the call that the motorcycles were only a few minutes away, we all went outside and got signs to hold up and wave around.  Look at these cuties!  (Abby and E are hiding behind theirs!)


When the motorcycles all got there, the kids were able to explore them.  Caleb even got to sit on a few!  Abby was too traumatized by the Ronald McDonald sighting to do much of anything but whimper in my arms.  (We will not be taking a trip to Disney World until she gets over her fear of characters!)


Caleb was in Hog Heaven!  Pardon the pun...


This is Chris, who organizes Roaring to Ronald's every year.  It's both a fundraiser for the House and a super-cool experience for the families.  Afterwards, everybody has a yummy catered lunch outside at the playground.  It's such an awesome event!  Thank you, Chris, for all of your hard work.  She remembered Caleb from when we were here 3 years ago!


So, this was pretty much an awesome way to start our newest RMH adventure, doncha think?  :)



Tuesday, June 4, 2013

The Light at the End of the Tunnel

T-5 Days!  Work is winding down and I've put a huge dent in the packing.  I still need to clean the car and we have a busy day on Friday, but I'm getting there.  We move in on Sunday, which will be a crazy, busy day.  Then, Monday will be in-take day where I do a lot of paperwork, answer lots of questions, and go over her medical concerns...and meet with everyone who will be working with Abby and hope that I feel comfortable enough with them to leave her there alone!!  :(  Tuesday, I'll be with her part of the day before leaving her.  Then Wednesday I'll officially hand her over for the entire day (8:30-4)...and I will miss her!!

Pardon my last of posting while I'm packing, getting last minute appointments in, cleaning the car, etc. Postings may resume after we are settled at RMH!

Saturday, June 1, 2013

Beach Babies

On Sunday evening, we took the kids to our local beach to play in the sand.  It was Abby's very first time on the beach!

The jury was out for a while on whether or not she liked it.  She whimpered for a while and wouldn't play with anything.

Do you see the pouty face?!


She did like watching the water with her daddy.  That got her in a better mood.



It was a little chilly in the water, but she liked when it came up over her toes!


Caleb, on the other hand, had a great time!  He dug, sifted, and sorted his way through a lot of sand and shells.




I finally got Abby playing in the sand...but notice where she is sitting!  Certainly not in the sand!!



The highlight of the playtime was digging a big hole and making a sand castle.  They liked standing in the hole!  :)



Simple, fun, memories.  :)