Brain Dump...Lots of pictures!

For the first time in the 10 years we have lived in our home, our lawn will be virtually dandelion free. Hannah loves the yellow weed and refers to it as a "beautiful flower". Many people spend thousands on lawn care to have their lawn weed-free.  We just put our thousands of dollars into an alternative method of having a weed-free lawn:)  Thanks to this cutie:   

Monday morning Hannah allowed Natalie to hang out in her crib while I picked out their outfits for the day.  Here’s photo and video of this rare opportunity:

She LOVES her sister!

Such a cutie

They are this close to each other
 and still smiling!

Kisses for Hannah

  

While Natalie and I were waiting patiently to pick up Hannah from school, we did an impromptu photo shoot with the iPhone…

      This morning the girls and I packed up early and hit the road.  I was on a mission to hit up the drive-thru ATM by our house.  Hannah was staying after school for a pizza party lunch and I needed $5 cash, naturally I didn’t have it because I scrounged up five bucks (from around the house and my emergency coffee fund) the last time she stayed for lunch!  Little did I know, before they open, the bank typically services and restocks the ATM’s between 8:30-9am.  This just happened to coincide while I was trying to access the ATM.  I drove over to the Wawa in the same shopping center and as I pulled into a spot, the entire scenario played out in my head.  It was very similar to If You Give A Mouse A Cookie.  ~I would have to take both kids out of their car seats and lug them into Wawa.  If I lug them into Wawa, then I would smell the coffee and if I smell the coffee, than I would want a cup.  If I get a cup of coffee, we'd inevitably walk passed the giant well-lit donut display and if we walk passed the donut display; then Hannah would have to have one.  And if Hannah wants a donut and I want a cup of coffee, than I just spent the $5 that I needed to pay for her lunch. Oh, and I'd be doing all of this sans a stroller. I changed my mind and decided that we would do a PNC tour…I finally found one that had a functioning ATM!!

Check out this Race Car Study through the University of Delaware.  A week ago Monday a PT student who’s participating with this study came out to trial Natalie in some of the race cars; to get a feel for which style will meet her needs. 

Natalie has been approved to participate in the study!!  We are still in the baseline phase, but we've already completed the home visit and the developmental tests.  I'm very excited and can't wait for her to receive and start using her race car!!

Brain Dump...late again

Sorry, I'm averaging a new Brain Dump post every other week instead of every week as I originally intended.  Life has been crazy hectic...attending several conferences, dinners, parties, therapy, and sprinkle it with some mommy guilt...that's the extent of my past two weeks!  Without further ado...

I know I complain that I am tired, often.  But this week I literally thought about going to the basement and putting the whites from the washer to the dryer.  When I got to the basement, I started the dryer and walked away.  As I was about to head up the steps I realized that nothing was clinking (buttons & zippers up against the metal door- I don’t want you thinking that I have some issue with my dryer).  I walked back into the laundry room to discover that I had not even taken the clothes from the washer!  At that point do you just call it a day?  Go back to bed and try again the next day?

I snatched up an opportunity of a lifetime!  Our sitter was in town a week and a half ago for spring break.  I was so grateful that she took the time to email me and ask if I needed her.  I responded with “ HA!!  HECK YEAH I need you!!”  With the unseasonably warm weather we’ve recently been blessed with, I let Elizabeth come over and entertain the girls.  I needed uninterrupted time so I could see what Hannah might still fit into from last summer and sifting through Hannah’s baby clothes to see what will work for Natalie.  It’s a double edge sword…it’s amazing diligently I can work when I’m not constantly interrupted, yet it’s amazing how fast I can burn through 2hours alone!  I highly recommend this for all moms.  Hire a sitter and give yourself two or three hours, it was one the best gifts I could give myself….aside from a day at the spa, but then I would have just felt guiltyJ

 What better way to celebrate World Down syndrome Day than with your very own Down syndrome delight?  I mean, seriously, who wouldn’t want to spend a day with this little cutie? 

Hannah was excited to celebrate.  She had no clue what we were celebrating or why, all she knew was that she was wearing an over sized t-shirt with ribbon tying up the sleeves…and she felt like a princess.

  We were so grateful to have so many supporters.  Their participation varied from thinking of us to shout-outs to wearing blue & gold or various shirts supporting Natalie!  Every year we reach more and more people, touch more lives and increase the awareness!   Even though our own personal celebration wasn’t a huge production, we still made an impact and had a fun time doing it!

Two weeks worth of Brain Dump!!

Yeah, yeah, yeah.  I know I missed last week’s Brain Dump.  We were busy: visited the grandparents, attended Kellen’s 2^nd Birthday Party and attended Adrianna’s 8^th Birthday Party.  Come Sunday night, we were exhausted!!   Just look at it this way, you get DOUBLE the storiesJ

~I decided that I needed a pedicure.  To save the money, I’ve been doing them myself.  It’s my biweekly treat to myself when the girls are napping.  I get to prep my feet and put a new shiny coat of polish on my nails.  Hannah didn’t really nap this particular day so my pedicure was a quick process and I did as much as I could before I rescued her from her crib.  We went into the living room so she could read books quietly while I finished pampering my feet; before I started her pedicure (ah, the life of my almost three year old!).  I was rubbing lotion on my foot, Hannah looks over at me and says “Mommy, you have toe jam?”  She is obsessed with the lint that socks leave in between toes and refers to it at “toe jam”.

~~I have the worst Mommy Guilt.  I preach to other mom’s about not feeling guilty and typing out excuses as to why they should not let it get to them or how to “let it go”, yet I can’t do that for myself.  GAH!

~~~I have a bumper magnet that I proudly display on the back of my mommy van (yes, I’m one of THOSE moms), but it’s for a really good cause….cause it’s for Natalie.  It’s a hot pink rectangle with the words “My Daughter Has More Chromosomes Than Yours” in white.   I often think how many moms read it and snicker to themselves and say “no she doesn’t”.   A few Saturdays ago Ben, Hannah, Natalie and I attended the DE Down Syndrome Association Valentine’s Dance.  We had an amazing time!  Natalie was so social and she loved meeting new friends and dancing with mommy, Hannah & daddy.  She spent most of her time in the Ergo baby carrier, but she is quite content in there, plus it deterred people from touching her (did I mention I have a severe phobia of germs?  Two hospitalizations in a 4weeks span will do that to a mom!).  Hannah had an absolute B-L-A-S-T!  She wore her heart tutu that she sported for Natalie’s birthday party and her Valentine’s Day party at school and she thought she was all that and a bag of chips!!  We practically closed the party!  We even happily obliged when Hannah was chosen to take home one of the decorative heart balloons …just what we needed, more balloons.  As if we didn’t already have 6 cornered in the living room, left over from Natalie’s birthday party and hospital stay!  Sorry, now I’m just getting off topic!  The point of the story, as we left the Middletown Moose Lodge with full hearts and grins from ear-to-ear, I busted out with laughter when I looked at the back of my van and read my bumper magnet.  Oh the irony of that magnet at a Down Syndrome gathering. 

~~~~~During the first weekend of March we had an addition to our home.  A bunny has set up camp behind the barberry bush that is in our front landscaping.  You can see him/her as you stand on our front steps.  Hannah is beyond excited to have a new animal to call her own.  I’m fairly certain she will be a veterinarian when she grows up…she inherited her love for animals from her Uncle RayJ Anywho, as Hannah was walking up our steps and she saw the bunny she immediately gave him a name; Henry.   That name came out of the clear blue….then it dawned on me, the day before we attended a playgroup sponsored by the DE Down Syndrome Association.   Hannah had made friends by sharing her apples with a boy named Henry.    Obviously he made quite an impression, she named a bunny after him!! 

~~~~~~I am in love with unseasonably warm weather we are experiencing.  We've had temps in the mid 60's to mid 70's for almost two weeks now.  I’m also worried that come summer, it will be 120 degrees!  The Rohe family had a spectacular weekend and it ended this evening with an impromptu bbq with my parents & sister.  After Hannah had finished her meal, she was let down from the table and asked to use Auntie Kelly’s phone; Hannah loves watching videos of herself on everyone's phone!  Hannah found the camera feature and went to town!!!  She walked around our house snapping pictures of Pops, Natalie, Ben, my arm, my face, her eyebrows and the hallway.  The best part…after every photo she took she would say “ohhhh, that was a good one!”  This kid is too much!!

Brain Dump...Mostly Hannah

On Wednesday, I was feeding Natalie a bottle before her afternoon nap.  She grabs her burp rag that was draped over my shoulder and proceeds to play peek-a-boo by covering and rapidly uncovering my eyes, then giggling.  I was trying so hard not to laugh at her, as naptime is a very serious matter to this mommy!!  The following day, instead of playing peek-a-boo, she decided to laugh hysterically at me…she was deliriously tired!

We use Burt's Bee All Better Balm (we refer to it as “boo-boo balm”) on scrapes, cuts, bruises and chapped cheeks/noses.  We ended up having to hide them from Hannah…you see, it’s in a tube similar to chap stick and we all know what happens when we wind up the chap stick with the lid still on.  Yeah, well Hannah did this to all our tubes of boo-boo balm so when I purchased all new tubes, I hid them from her.  On Monday she found Natalie’s tube and popped of the cap, “mommy, you have boo-boo’s?” as she pulled up my pant leg.  She proceeded to put the balm on a bruise.  A moment later I realized that she was still touching up my leg with the balm, I looked down to see her rubbing it on my freckles too…hahaha.

I am so grateful for my video monitor!  Hannah has recently (well, over the past 2 to 3 weeks) declined her afternoon nap.  I continue on with our routine of rocking, reading and singing before placing her in her crib. Every. Single. Day.  In hopes that she will fall back into her old routine of actually taking a nap.  On this particular afternoon my gut was telling me to ‘check in on her’.   As I flipped on her monitor, I was so relieved I did.  I forgot to move her changing station basket out of arms reach and I caught her JUST in time before she spread lotion all over the wall and her crib, again.  I miss the days of her taking the wipes out of the warmer (also located next to her crib) and wiping down her crib!

On Tuesday, Natalie had what can only be described as a PHENOMENAL Physical Therapy session.  She was amazingly happy and super cooperative.  Typically she only lasts 45mins at best, but this particular day she did so well that her therapist and I lost track of time.  Following her PT session I still had to change her diaper, get her dressed, jacket and shoes on and last but not least…feed her a bottle.  Natalie is a slow bottle eater, very slow.  She often falls asleep sucking on a bottle because it’s that tiring for her.  Well after an hour-long intense PT session the bottle basically had to drip into her mouth and then she’d swallow what had built up.  Suffice it to say we were running late to pick up Hannah; and we hadn’t even started our trek from the ground floor of the hospital to the parking lot.  Natalie and I hightailed it out of there and hopped on 141.  I know this highway is frequently monitored for speed and I make it a point to drive the speed limit….except this particular day.  THANKFULLY a white Pathfinder on the other side of the road flashed his high beams a few times, literally seconds before I was to round the bend to a State Trooper with his radar gun pointed right at me.  Whew!!  Mr. Pathfinder, if I ever find you, I promise to give you a big kiss!!  To pay it forward, later that morning I forewarned people on Kirkwood highway about a cop up aheadJ

 Every year I snap a picture of Hannah
 posing with her daff-o-deals

The front of our house faces south so we are drenched with sun all day long.  My mom planted daffodil bulbs in our front landscaping for Hannah when she was a baby.  Her thought was that they would bloom right around Hannah’s April birthday.  Well with the mild winter we’ve had the Daffodils sprouted several weeks ago and Hannah has been watching them intently.  When the first batch had a bud, she was beyond thrilled. She would stop, every time we walked to/from the garage, to say hello and kiss the “daff-o-deals” (as she calls them).  

The 1st two to bloom~ 2012 season

On Monday evening I took Hannah to her first Toddler Tales at our local library.   It Our first session couldn’t have been any better, the books, snacks and craft were all birthday themed…Hannah’s favorite holiday!  When storytime came to an end, Hannah and I went to pick out new books for her to take home.  The reality: She played with the other children while I chose books for her.  When storytime came to an end, Hannah and I went to pick out new books for her to take home.  Now, excuse me while I backtrack...on our drive to the library I had chugged a travel mug of coffee and drank a tall bottle of Smartwater. (yeah, you know where this is going).  By the time we wrapped up Storytime and book selection/playtime, I had to pee!!!   The main bathroom was out of order so we had to walk through the main part of the library…you know, the quiet part.  We are smack in the middle of the library and Hannah stops dead in her tracks:

Hannah~ “MOMMY, WHERE ARE WE GOING!?!”

Me~ “To use the restroom.”

Hannah~ “MOMMY, YOU HAVE TO GO POOPY??”

Hahahahahahahahaha….

Enjoying a snack & a story 

February 2, 2012

      I can't believe it was one month ago today that I found myself trying to calm a cranky baby.  Natalie wasn’t herself the entire day. A baby who only cries if she’s overly hungry or overly tired.  She cried the entire day.  If she wasn’t asleep, she was crying.

     I’m.    Not.    Kidding. 

     Every Thursday, we go to my parents for dinner, EVERY Thursday.  I wasn’t planning on going because Natalie had been so fussy, but since she awoke at 5:30pm from a 3.5 hour nap, I figured she had plenty of energy to stay awake till 7:30.    She was actually not crying when she woke up.  Ben came home and she gave him a few smiles.  I thought, “This is GREAT!  She must being feeling better.”  I let her spend some time with her daddy while I decompressed and packed her dinner prior to heading to my parents. 

   By the time we arrived at my parents house (which is next door to ours) Natalie had slipped into her fussy mode, again.  Her breathing was erratic and it frightened me.  My first thought was “shit, she’s having cardiac issues.  She’s shunting.”  I tried to calm myself and think of other signs to look for.  I needed more evidence to back up my theory before I whisked her off to the ER.  In my head: “Think Shawn, THINK.”  I remembered that I needed to count her respirations; she was at 60 breaths per minute.  A child her age should be around 30 at the highest…check.  The next thing I noticed was her grunting.  The best way I can describe it, it was as if she was straining to poop, but her ab muscles were not engaging…so it was obvious she was not trying to poop.  The third and final piece of evidence was when her extremities, lips and gums turned purple.  I freaked.  I ran home to pack a bag and call the pediatrician to confirm my fears.  Thank goodness the on-call pediatrician was Natalie’s actual doctor.  I could hear the fear and panic in her voice, that’s when I knew I wasn’t an overacting mom.  She suggested calling 911, but I convinced her that I was capable of driving Natalie to the ER; and that as long as she called the ER to notify them of our impending arrival, I would be forever grateful…she obliged.

   Upon our arrival, they took us right back to a Triage room.  Natalie’s O2 was at 92 on room air and she had a fever of 101.8 (she had no fever when we left home 20mins earlier).  The nurse gave her Motrin and escorted us to an ER room.  Almost immediately we had a doctor and a respiratory therapist in our room.  By this point her fever had reached 102.4.  Seeing as we had just been to the ER one-week prior for croup, the doctor was baffled by Natalie’s downward spiral.  She ordered another set of x-rays and blood work.  First up, x-ray…Natalie was so exhausted and lethargic, she barely put up a fight.  By the time we walked the 20 yards from x-ray to Natalie’s ER room, the doctor was waiting to tell me that Natalie had pneumonia.  They wanted to get an IV started and run some labs.  I despise IV’s.  I’m a hard stick and so is Natalie!  The IV team arrives and they looked for 20mins to find a decent vein.  They began the IV process and that’s when Natalie’s 02 dropped to 88-89.  We masked her and she received O2 support till the IV team was finished.  She bounced back to her new norm of 92.  Once she fell asleep, she dropped down to 86 and stayed there…86 isn’t good, she’s typically at 100% and might drop to 96 as a low.  The doctor came in and hooked my girl up with her very own nasal cannula.  Then she informed me that they were admitting her.  I wanted her to go to 2B, the cardiac floor, but she isn’t able to room on that unit since her heart has been repaired.  Instead, she received a room on 3E.  The staff on this floor was simply amazing!!!  Very kind and extremely accommodating!  Natalie’s roommate and his family were amazing in their own sense…amazingly stupid!

   My mom was gracious enough to stay with us during our three-night stay at Hotel DuPont, in a reclining chair, nonetheless.  I am so grateful for her support!  I’m not sure if she realized what a calming effect she had on me during that stay.  On our first night in our room, I tried to lay down and rest.  Unfortunately, Natalie was restless.  She was exhausted but I think she knew she wasn’t in her own crib.  I worried that she would bang her head into the rails (something that is not an issue at home, because she has a bumper pad).  Another issue with sleeping in the same room as your baby, every time she moved or made a sound I jumped up to see what was wrong.  Once I finally was able to settle myself and was just about to drift off…In walks Natalie’s roommates mom and grandmother.  What a dynamic duo these two were!  Hopefully you followed my FaceBook posts last month, because I’m not going into too much detail about the Billies from Bridgeville.  They came in at 2am with suitcases and stroller in tow.  My mother and I had the pleasure of hearing the entire life history of the roommates (he was 4mos old at the time) baby mama & daddy drama, the woes of the grandmother (she is on disability/SSI)…and it went on and on and on.  My mom and I had front and center seats for a live, 3-day episode of teen mom. 

    Somewhere around 5am, Natalie’s nurse came in to inform us that Respiratory Therapy would be coming in to place her on Vapo-therm (a high flow oxygen therapy).  The regular O2 wasn’t cutting it for her.  Even though her numbers looked good, she was still struggling to breath and continued to have high respirations.  I’m not sure if I blocked out this process, forgot it all together due to sheer exhaustion or if I stepped out of the room while they set her up…either way, I don’t recall any of it except for when I asked them the move the system to the other side of her bed so that I could hold & rock her. 

    The next day (Friday) people were in and out of her room.  It was like a revolving door.  It didn’t help that her roommate had a different team than we did, so every time we got settled Natalie’s roommate would end up having some a nurse, doctor, respiratory therapist or social worker stopping in.  It was frustrating!   One thing that was nice, Ben came up to the hospital to relieve my mom and I so we could go home, shower and pack a change of clothes (seeing as we were told Natalie would be there till at least Monday).  

  Saturday was pretty much the same as Friday, minus a time-out of the hospital.  The roommates & the drama kept us quite entertained!  Natalie did start to eat a little bit of her rice cereal and pureed fruits Saturday at lunch.  By the time evening rolled around she was smiling, happy and kicking her legs and feet…so much so, that she kicked her IV out.  The nurse called the doctor, who wanted to establish another IV…Fan-freaking-tastic!!   IV team rolls in and I inform them that she is a difficult stick.  Then I escort myself to the kitchen to wash and sterilize her dirty bottles from the day.  I come back from my ventures and they are still working on her.  I tagged my mom out of the game and took over her job of holding down one or possibly two of Natalie’s appendages.  15mins later an IV is in.  45mins after that…it was out!  When the nurse came in I looked at her with my frazzeled self and said “no more! If the doctor wants the IV team in here again, you tell her I said no and she can come talk to me.  I want to switch Natalie over to oral antibiotics.  I’m done and so is she!”  For the record, I think my mom was done too.  It’s extremely exhausting to have a little one screaming from pain, especially when you know just how painful the pain actually is!  Turned out Saturday night was a big night of change for little Miss Nat.  She ditched her IV (twice), switched over to oral antibiotics AND she came off of Vapo-therm & switched to regular O2.  Natalie did well, she even maintained fantastic oxygen levels that night while she slept! 

  The next morning when her nurse practitioner arrived, my mom and I convinced her to let Natalie go home.  Natalie had to pass one test and that was to maintain 95% (or higher) O2 levels, while napping.  My girl passed that test with her morning nap!!  And by 3pm we were packing our bags and signing discharge papers.

   That was one hell of a crazy & exhausting weekend.  Thanks for reading.  Enjoy the following photos of our stay!

In the ER, after IV and nasal canula.  She was being combative and pulling at her O2 tubing
 so she became the proud owner of a set of "no-no's".  See her arms??  lol.

Her 1st night in her room on 3E

Friday Morning

Natalie's room faced the construction site...kinda neat!

Ahhh...she feels so refreshed after her sponge bath:)

No pictures, please!

Ok, ok...just one

Friday night...after nap

Hangin' with mommy

Saturday night; finally in the mood to eat

HELP ME!

Can you, um...get me out of here?

This was the deciding factor...she maintained appropriate numbers during her nap!

Our bags, waiting for Patient Escort to arrive.

I leave you with this picture.
This was on a locker outside our room..
It made me chuckle every time I read it!