Road Trip

Tomorrow is the big day ... road from from GA to NY with Anne and the girls.  I've been running around like a chicken with out a head, picking up things to keep Zoey busy and full (that kid could out-eat a grown man!).  Hopefully I don't forget anything important - basically as long as I have all of Riley's med's and equipment I'll be all set.  Anything else can be replaced.  This is our first out-of-town trip with Riley so I am a little anxious; no so much over how she'll do in the car because I suspect that she will sleep through most of it, but on making sure that I have everything that she needs to stay healthy and happy.  Wish us luck as we embark on this day long "field trip" (as Zoey is calling it).

Swallow Study

Well Riley had her swallow study and we had a good news, bad news kind of situation.  Good news is that she is progressing and that the therapist also agrees that Riley will eventually get rid of the g-tube.  Bad news is that it is probably going to take a little longer than Josh & I were hoping for.  I know Josh was hoping that she'd be tube-free before starting in day care in October, but we just have to roll with it.  We will continue feeding Riley the baby food, but we have to take longer between bites ... even if she opens up and wants another bite right away (which is a common occurrence) since it takes her 2-3 swallows to get her food down her throat properly.  We're only going to offer her water from the cup, no more juice in case she does aspirate it into her lungs.  Also, not at the same time that she is eating to help avoid the aspiration as well.  It could be that he system still needs to adjust, but we just need to keep putting one foot in front of the other.  Riley is doing so amazingly well in everything that we just need to count our blessings, not our setbacks.

G-tube Update

Well, we had our latest appointment with Dr. Sherrod, our GI, whom I just adore.  Riley is doing awesome ... but the greatest thing is that Dr. Sherrod told us is that Riley will get off the g-tube, it's just a matter of when.  I have to admit that I totally teared up, but they were good tears.  It's just a great thing to hear that it will happen, not that it's only a possibility.  Unfortunately there are kids out there who don't have that possibility. 

We are currently working on weaning Riley off of her continuous night feeds.  Every 3 days increase her daily bolus feeds by 10 ml (each feed).  We know that Riley required 835 ml in a 24-hour period to maintain her caloric intake, so whatever is leftover she gets on her continuous feed.  The first day we increased her, Riey spit up after her first couple of feedings.  It seems like it will take her little system a little while to adjust to the changes.  This is a good thing though, for as Riley becomes more mobile, there are more and more times she wakes up tangled up in her cords, or we find her yanking on it, or even chewing on it.  This is a big step in getting up to our ultimate feeding goal.

We continue to introduce a sippy cup, and even a regular cup for drinking purposes. Dr. Sherrod said we will get to the point where we try out giving Riley 1 oz of her feeds orally and see how she does with that.  Some kids take to it right away, and just want to gobble it up.  Other kids take a little longer to adjust.  Plus there are the times that the kids who love it take a slide backwards.  We do know that even when we get to the point where Riley is taking 100% of her feeds orally, it will still be a few months after that before we remove the Mic-Key.  It's very easy to take out and close up, but it's much more difficult to put back in - Lord knows I do not need my little girl having any more surgeries.

I am hopeful and that is a good thing.

Sisters

Zoey and Riley just adore one-another; no one can make Riley laugh like Zoey can and Riley is always looking at what her big sister is doing.  I hope those two keep it up and don't let growing up get in the way of their relationship.  I'm hopeful that the 4-year age difference will be a good thing ... just enough that they can have separate interests and friends, but not too much that they can't relate to each other. 

As Riley continues to progress in her development, it is fun to watch the two girls interact.  Zoey, being the ham that she is, loves to put on a show (any show for anyone) and Riley being the true little sister just loves to watch whatever show Zoey decides to put on.  Be it dancing, singing, or just running in circles to make Riley laugh.

Father's Day

Well, after traveling for almost 2 weeks straight, Josh is finally home (at least for a little while).  Although he ditched us for the Roller Derby, even though some of the wives were promised that we could go the next time the guys went .... but I digress.  All Josh wanted to do was sleep in for Father's Day as going to Roller Derby was his "present".  Of course once 11:00 crept up on us, it was time to wake up daddy with some cinnamon rolls, a juice box and presents.  The girls & I did a secret photo shoot of them in their matching Red Sox gear (the very first thing I bought of the baby before we even knew who she was).  Luckily, he really liked it.  We spent a nice afternoon at the pool cooling off from the heat, then chilled out at home as a family and enjoyed one-another.

Travel

Well Josh has been traveling a lot these past few weeks ... it's always hard with him gone, but we've been doing our best while he is out bringing home the bacon.  Zoey has actually been on pretty good behavior, which is a nice turn of events.  Riley is a bit cranky, but that is primarily due to the fact that she is teething, so we'll cut her a break.  Nana & I are holding down the fort and watching what ever we want to on the TV (some good Lifetime TV movies and Real Housewives of NJ).

Zoey & I are starting to gear up for our road trip to NY.  It's going to be a long drive with the 2 kids, but we'll make it.  I've slowly been stocking up on stuff to keep Zoey busy in the car.  Cheap movies that she hasn't seen yet, new crayons and a sketch book.  The thing I dread the most is the packing, I guess it's because I am nervous that I will forget something important.  Granted I always start a packing list like 6 weeks before the trip and generally speaking I tend to remember to bring what we need, so I am not sure why I stress over it so much.  It's going to be a short trip, which stinks, but it will be a fun one, I am sure.  Looking forward to my sister Melissa's shower.  I am bummed that the red dress I ordered to wear makes me look like I am wearing a mumu, so I'll be sticking with the basic black cocktail dress.  Wonder how I can go about returning that dress.  I've been working on dresses for the girls, yes, they match.  The fabric I got is really cute.  Zoey's is all done, although it's a little longer than I wanted, so I think I'll do a quick hem job.  I still need to measure & cut out Riley's dress, considering that we are down to a week and counting, I guess I need to make that happen, and soon.

So last night on my way to book club, I had to pull over to the side of the road for a fire truck.  Well the thing is we were having a MAJOR rain storm, I was just before the bridge on Kimball and they are doing major road work over there.  So, needless to say there was no where for me to go but in the mud.  I was certain I was going to get stuck, luckily I didn't, but I did hear a ka-klunk noise and as soon as I got back on the road there was a slight shimmy to my wheel.  UGH!  With Josh out of town I was thinking about how/when I could bring my car in to be checked out before the NY trip.  Well, this morning driving 400 my bracelet and watch were rattling so loudly against one-another I had no choice but to call up KIA and ask if I could just come on in - thankfully they had an opening and thankfully it ended up just being mud in the wheel well and an alignment.  I was worried it was going to be a major (hence, more expensive) issue, but I walked away with only a $139 bill.

Josh is coming home tomorrow and he's looking forward to sleeping in for Father's Day ... I guess we can make that happen.

Tooth

Well, it's official - Riley's first tooth has popped through.  On her 8-month birthday we have the evidence, the top of a little tooth has come through.  Funny enough, it's the same tooth that came in first for Zoey too.  I am amazed at how well Riley has handled this.  She really was not drooly and she was barely fussy.  She has been chewing on anything that even went near her mouth, but that has been the only major indicator that a tooth was coming.  Granted, Zoey started showing all the teething signs around 3 months old, but didn't actually cut a tooth until she was closer to a year old.  So, who knows how these things work.  I really think that Riley didn't want her little friend Lila, who is about a month younger, showing her up as Lila cut her 1st tooth last week.

Swimming

It's that time of year again where we went from lovely nice weather to tropical heat over night.  Thankfully or pool has been opened for the last couple of weekends.  In a nice change of pace, Zoey took right to the water this year.  Unlike last year when we she had to be peeled off my body just to get her big toe wet.  This year she is jumping in, playing Marco Polo, swimming underwater and just having a great time.  The hard part is getting her to leave when time is up.

Riley is slowly adjusting to the pool as well.  At first she was not a big fan, which I tend to blame on the initial temperature of the pool water.  We've now been able to get her in her floaty and she will lean back and enjoy the ride, little legs kicking underneath the water.  The great thing is that we do not have any restrictions with her Mic-KEY (her feeding tube button).  Dr. Sherrod, our GI, said she can even go in lake water or ocean water.

Pre-K Graduation

Today was Zoey's Pre-K graduation from Appletree-ABC.  The class put together a very nice ceremony for the parents & grandparents, starting with a play of Goldilocks and the three bears.  Following were several songs and dances.  The kids were all presented with certificates to show their completion of the Pre-K program.  After all the group performances, one of the little girls did a solo dance ... and we went Bollywood.  What a performance she put on!  I was so impressed with how well she remembered her 3 minute routine and how well executed it was. 

We are so proud of our little girl for how well she is doing in school.  We have had some behavioral issues with school, but the teacher, Ms. Andrea feels that Zoey will out grow this.  I can only hope that she is right with that assumption.  After this nice long Memorial Day weekend, Zoey will start summer camp at Appletree-ABC, and then -- the Big Times; Kindergarten at Ocee Elementary.

Getting caught up on events ....

Easter - 4/24/11

We celebrating Riley's first Easter with a nice, low key day at home.  The girls woke up to fun filled Easter baskets and yummy Easter bread.  We had our own egg hunt in the back yard and Zoey did great finding all the eggs (and sharing with her sister)

Royal Wedding - 4/29/11

This mom TiVo'd the wedding of William and Catherine so that the girls could watch it and see a real princ marrying his princess.  Unfortunately due to misbeahving, Zoey wasn't able to watch until Sunday morning.  So dressed in our PJ's and crowns, we all sat down to watch the pre-recorded festivities.  Okay, I admit that Rose Mary and I couldn't wait, so we'd already watching it Friday night, so we were able to fast forward to the parts that would keep Zoey's attention.  I vividly remember watchng Charles and Diana getting married, so I wanted my girls to have that same opportunity.

End of Soccer - 5/14/11

Zoey's first season of playing soccer has come to an end with a fun game followed by a fun pizza party.  Overall Zoey had a good time playing soccer on the Sharks team.  For some reason she can kick butt with the game with Josh in the back yard, but when actually playing a game she turns into this timid kid.  We suspect it's that she's just a little too polite and doesn't want anyone to get hurt.  While those are commendable traits, it's not always the best thing for wining games.  Granted, they don't even keep score at this age, but some day they will.

Zoey's Dance recital - 5/20/11

Zoey had her 2nd dance recital at Appletree-ABC.  The great thing is that this dance company comes to the preschool for classes and they do the recital right at the school.  Plus the provide the costumes to use on recital day, so that is a big money saver.  Zoey was an amazing littler performer.  She just loves being in front of an audience and strutting her stuff.  I was impressed at how well she remembered the steps and didn't have to look towards the teacher all that much.

Riley's 1st time at the Pool - 5/21/11

We ventured into the pool last Saturday, and man, was that water COLD!  It probably wasn't the best idea to expose Riley to her first experience in the pool in freezing water, but we did it any way.  Bunbled un in a swim suit that covers her scar from exposure to the sun, we ventured into the artic water.  Needless to say, this was not a favorite experience for Riley.  I was finally able to get her about waist deep when she gave up and promptly fell asleep on my chest.  Hopefully as the water continues to warm up she will like it as much as Zoey does.  Thankfully Zoey took to the water like a fish and she remembered quite a bit from her swim lessons last year.

22q at the Zoo Worldwide Awareness Day - 5/22/11

We we fortunate to have a participating zoo near us in this 1st ever worldwide awareness day event.  Our local 22q partnered with the Dempster Family Foundation and we have the 2nd largest gathering of the 65 participating zoos internationally.  We all had matching t-shirts that we pre-ordered, but can you beleive that they did not have baby sizes, not even toddler sizes.  So, determined to have Riley, the reason for our going to this event , matching the rest of the family, I found a pattern on-line to turn her t-shirt into a romper.  It was nice day (but super-duper hot) where we met other families living with 22q and it was an amazing thing to see all these red t-shirts all day long

After the long day at the zoo, every one conked out.  Riley has been sick with a cold and thank heavens it seems to be staying as just a cold.  Well, the little one has literally infected everyone in the household except for Nana.  So, she passed out on the floor with Duke keeping her company

Physical Therapy - weekly

Riley has (finally) started physical therapy (PT) through the Babies Can't Wait progam.  Sumi, the therapist, said that Riley is really not that far behind.  Since Riley was born at 37 weeks, they look at her gestational age, not her chronologial age.  Based on that Riley is pretty much on target for an almost 7 month old, versus an almost 8 month old.  Sumi is working with Riley to strengthen her core and get her sitting up on her own.  Sumi will be coming to the house once a week and we will continue the exercises at home to help continue her development.