Life as a Leach

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 ...

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.

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.  ...

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 do...

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 muc...

......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...

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. ...

We love you, Daddy!

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 ...

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 t...

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! ...

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 staf...

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.  

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. Yes...

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....

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"...

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 i...

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!

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.  :)