Anxiety

There are so many things that I should be doing.  Getting ready for Grace's swim meet, laundry, cleaning, taking out the trash.... But instead I am so anxious I am almost paralyzed.  I am anxious for Grace to swim tonight, she hasn't practiced all week.  She has been to VBS instead, which she has loved.  But mostly I am anxious for Monday.  The fear of the unknown can be awful.  Logically I know it is just a test, that she has had a cath before, she has been sedated before and come out clear and that this time next week she will be off of all restrictions, probably even able to take a bath.  But instead I am up until way past midnight, what iffing.  I pray every chance I have, I worry all the time and still life keeps trucking.  I want it to be June 14th already.  I want it to be over just as much as I want it not to happen.  We don't know what time to be there yet, they will let us know Friday.  I have to pack an overnight bag in case we have to stay.  We have to make arrangements for Grace to have things to do next week.  I don't even know what happens after.  Where do we go for our check up visit, when do we have to do that?  I cry for unknown reasons, I can feel the anxiety in my heart.  I am writing in hope to alleviate some of the anxiety.  Oh well, time to pack the bags for tonight.  I hope Grace does OK and is not too tired to perform at her best.

TTFN

Big Girls Don't Cry, especially when dancing.



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keep smiling!



Lily had her first recital this year.  Her group being between the ages of just turned two to around 33 months was a hoot.  They danced to "Big Girls don't Cry".  It was great.  At any given moment one child would be looking on the stage for their sticker to stand on, following Ms. Amanda as she demonstrated the moves or waving to thier parents; but none of them did this simultaneously.  The only thing that they all seemed to do together was clap when it was all over.  Lily had a great time dancing, smiling and most especially being a part of something she has seen her big sister and mommy do now for 3 years. 

Grace did a spanish ballet number and then tap danced to "We Got The Beat!"  Her group is our studio's oldest group of girls.  They did really well.  They knew their dances without assistance and performed each step with precision.  Grace even smiled some, however both my girls when they are concentrating seem to chew their tongues.  It also seems to be hereditary in that my mother and Aunt do the same thing.  Me not so much.



Both girls looked beautiful and made me one proud momma.  They also made a long day for mommy even brighter.  I need to say a big thank you to Grandma and Poppop from Florida for coming up for the weekend.  Your help and yummy food was greatly appreciated.  Also thank you to Granma and Papa for helping get the girls hair done and bringing Taylor to recital. 





Sisterly love!

At this point we have recieved the professional video, 2 days ago and I am surprised it still works.  We have watched the DVD at least 6 times most of them in succession.  I hope that my girls had fun and will always have fond memories of dancing and I hoped they learned from my one number that was titled "I hope you dance."  This journey we call life can be a struggle, I hope they remember to enjoy all the good moments and wash away the bad.



Is it over yet?

Have I ever told you I strongly dislike the month of May?

Well, it is not really hate, just frustration.  We try to jam way too much stuff into one month.  And whoever put mother's day in May was not thinking.  Let's move it to July or September.  Not when school is winding down, so there are performances, recitals, tournaments, competitions, last day parties.....  I want a day to just  sit and not think about anything and have peace.  (Never gonna happen)

This particular May has been hard.  My 2 year old laptop died never to be resurrected no matter how  much money we throw at it. Cody was very sick/hurt for about a week and a LOT of money. We have had massive amounts of things to do each day and the worry train just keeps on trucking June 13th is right around the corner.

That being said, I love the things that happen in May.

This past weekend was recital, yet another busy hectic day, but fantastic. I laughed, I cried, I slept like a rock.  It was Lily's first recital, and she danced and smiled and did a great job!  Grace was great.  She knew her dances and smiled and only chewed her tongue in nervousness through half the dances.  She is really a great tapper and growing every week as a ballerina.  My classes did well too.  Thank goodness for grandma's and papa's who helped to take care of Grace and Lily and have them arrive on time, ready to smile for pictures and dance beautifully.  I will add pictures later and maybe video too.

This week is busy too.  Swim team end of year parties for Grace and Lily, post planning, swim team and then Daddy is off on Friday (first furlough day) and he will be very busy helping me clean out this weekend.

So here is to May almost being over, may June and July be slow and peaceful the way summer is meant to be.

Uh oh, it's May

Once again it is May.  (ugh!)

Take a breath now the month is only begining. 

We have Swim Team practice everyday,  we have recital in t minus 2 weeks, we have field day, 4 class parties, AIM presentations, homework , Tom is attending a friends wedding in another state,  and all that is on top of the normal month stuff like my 2 jobs, Tom's 3 jobs and School is still going strong for both Grace and Lily.  We will still have to do laundry, make lunches, cook dinners, clean rooms, send birthday gifts and Mother's day too, sparks and ballet class and all the things we can't plan for.

At this point I have spent last week with all phone calls forwarded to my cell phone so that I could get my phone call returned from Lily's cardiologist.  It only took a week and finally he called.  Sometime in the next 4 to 6 weeks Lily will have a catherization with possible ballooning of her right pulmonary artery.  Now I get to spend the next week waiting for the scheduling nurse to call to get us on the schedule.  Sounds like fun huh? 

So for now our summer plans are.........Swim team everyday for Grace, work for Tom and well Lily and I are waiting on that phone call.  I will let you know when our plans turn into something definite.  i can hardly wait(dripping with sarcasm)

Hippity Hoppity

Happy Belated Easter.  Yes I know it is a week late, but we have been busy as usual and I wanted to post info from the MRI first, but no news yet so here we go.

Really, just give me the chocolate.

What do you mean the hunt is over?

Some time for the Zip line, after a quick wardrobe change.

Time to make the ressurection rolls.

The hunt is on!

We had a quiet Easter at home.  We made deviled eggs.  We had a great lunch with wonderful friends.  We had two egg hunts. We ate way too much food and candy and I am ready for the Easter candy to quietly disappear.

I am sad that we did not get any pictures as a family.  I tried to take pictures of everyone there, they are not posted here because I do not have their permission.  But I forgot to ask my family to get together for one picture.  The girls enjoyed dressing up in their Easter finery.  Grace's dresses embroidery did not make it all the way through the hunt.  It started to unravel at the him.  Lily lost a button somewhere in Lala's backyard.  All in all it was good and they had fun.

The Easter Bunny was once again too good to the girls.  He brought play sandals in of course pink, the movie Tangled, a Dora movie for Lily, Lala Loopsy dolls and playset for Grace, a flashlight and a Bubble Machine for Lily and WAY too much candy.  Not to mention all the filled eggs from school easter egg hunts and the real hunts on the day.

This is how we wear our bunny ears, What do you mean that's not right?

Finding the eggs.

Checking out the loot at school

Lily's hunt at school

Peter Rabbit may like carrots, but seriously, GIVE ME CHOCOLATE.

April 19

So it just turned out to be another day.  For almost 2 months we have built up this day in our minds as the pinnacle of the spring.  NOPE!  We knew we would have no immediate answers, that we wouldn't know what was coming next and that it was just another test.  I began to realize a few days ago that it was not going to be cathartic.  I still feel in limbo, waiting for the other shoe to fall, for someone to call me and tell me that my baby is going to have more surgery or a catherization or possibly both.  I had a hard time planning things that would happen after the 19th.  I couldn't commit to do things, Easter, a wedding coming up in May, etc.  I also felt I had to get everything done for work, Grace and life in general before the 19th.  I failed miserably in that aspect.  I still have a ton of stuff to complete and Grace is going to be working hers buns off getting ready for her egg drop at school and getting her homework done.

We went in for a cardiac MRI that was suggested at the end of February/ begining of March so that the doctors could get a better look at the peripheral pulmonary arteries (which to you and me is the arteries that take the blood from the heart to the lungs to get the oxygen).  Her stenosis (tightening)  in these areteries is after the valve and was showing increased gradients well above what is considered normal or healthy on her echo.  Lily has also had a run of sinus infections/colds/ general snottiness since last October.  She has been on 5 different antibiotics since Jan.  The last one being for the last 5 weeks.  So her ENT ordered a CT of the maxiofacial sinuses to occur immediately following the MRI.  She has to be sedated for both so the easiest thing to do was do both at the same time, or one right after the other.  This meant one sedation, one recovery, two machines and only one stressful day for Mommy and Daddy.

We ordered a personal hospital gown from our friends at Emmy's Got Style with a matching bow.  They are a not for profit group that is committed to making patients feel beautiful while they spend time at the hospital, developed for the owners daughter with chronic health issues.  The gown was beautiful and had lots of pink as we requested, since it seems to be our girls favorite color.  Unfortunately the hospital was less than cooperative for letting her wear it.  We did put it on, but by the time the nurses who were prepping Lily for the procedure came in, we were changing her.  Everyone seems to blame everyone else, but I think it all ties down to the fact that we all get so stuck in routines and procedures that we forget the comfort of the patients and their parents.  They made us put a gown that tied on her with the ties in front.  By the time the procedures were complete, Lily had on a completely different gown on, adult sized and not tied, just draped over her with her arms through the holes.  We did get the bow on her in the recovery area, where she pepped up and took everyones attention for a while.

So we got to the hospital around 6:15 for check-in/registration.  Lily then decided to walk from the registration area to radiology.  She then quickly found the toys and wanted to play but no we had to be ushered back to a colorless/toyless room.  Once there she was weighed and measured, we were asked if she had a physical within the last 30 days?!?!?  Um, no, she did go for her 30 month appointment and has been to the ENT within the last 6 weeks.  No one said she needed a physical.  We had seen her cardiologist within 8 weeks and it took the cardiology department six weeks to get us on the schedule.  So, we never fully understood what that was about, just more to add to our worry plate.  Then we changed her out of her pajamas into our gown and let her watch a show while we waited.  Then we met the second nurse of the morning who made us switch the gown and then the anesthesiologist.  We were asked why she was having an MRI and not a catherization because according to the anesthesiologist her file looked like she needs a cath.  Um, the doctors here at Sibley Heart Center DECIDED she should have the MRI to determine what she needed, surgery, cath, nothing...  We were not so impressed with the anesthesiologist, she was nice enough, took good care of Lily but expressed her own opinion WAY TOO MUCH.  We then had to ride and elevator and go down to where the actual MRI is.  They are doing some updating to the hospital and the waiting and prep area for the MRI is under construction so they are borrowing rooms in radiology right now.  We were taken to another prep area, where we got to talk to Dr. Parks.  He is GREAT.  He explained everything to us and why the MRI not the catherization was what was decided.  It seems, that they are trying to reduce unneccesary radiation where possible.  The MRI is the least invasive but most telling procedure they have.  If a catherization is necessary a detailed MRI can tell the doctor where to go and what to do when they get there.  On the same note if a surgery is preferred to correct a problem, then you haven't exposed the patient to unneccessary radiation and other complications connected to a cath.  Everything is digitized on the MRI and 3D models can be made, it is amazing what all they can do.  Lily was given versaid to relax, which she did and got loopy too.  She was smiling and loving and cuddly and giggly and went easily to the nurse when it was time.

Tom and I then went to find breakfast, it was about 8:20.  We then had until around 10:00 to do nothing but read, sleep and worry.  At 10:00 they came and got us and took us with her on another elevator ride, her being asleep on a gourney to the catherization lab.  The anesthesiologist works the catherization lab after all cardiac MRI's are done.  By bringing cardiac MRI patients up to the cath lab, she can check on her patients as they recover and wake up.  The nurses in the Catherization lab are wonderful.  Lily had a nurse that she had 2 years ago in the CICU and step down unit.  He was very attentive and removed all those pesky wires, sticky things and IV lines whenever Lily asked.  It took Lily 30 minutes to wake up enough for the nurses to remove the tube in her throat that was placed to secure her breathing passage.  Then we got to be in the room with her as she drank juice, watched shows and complained about being "ticky"  which is sticky due to the EKG lines and iv tape.  She ended up enjoying 2 juice boxes and a banana before we were sent on our way home with a grilled cheese sandwich.  Half the sandwich was gone before we even hit the highway home.

We were all glad to get home about 7 hours after we first left at 5:15am.  We ate lunch and had a quiet afternoon of playing and eating.  We were all a little tired(mommy was really tired but stupidly stayed up until 10:00)  and tried to go to bed at a normal time.  Lily was up at 6:45 this morning ready to go, so Life goes on and once again I feel like I am playing catch-up. 

Super Lily, Fly Girl Gracie and Super Bunny

So spring break around these parts brought some crazy folks.  We had days of laying in our pajamas and wearing funny clothes.  Lily's favorite pastime was putting on her sister's old supergirl costume and running around "saving" things.  Grace would then put on a made up costume of a dressup skirt, an old scarf tied around her for a shirt and butterfly wings and be Super Fly Girl.  Lily was Super Eeiy.  She can't say the L's in her name at all.  Then her build-a-bear bunny would turn into Super Bunny.  Lily then liked to climb the stairs and say she was flying.  Luckily not off the stairs. 

We spent afternoons outside riding scooters, tricycles, playing with chalk, eating snacks and having a good time with the neighborhood street rats.  The older kids would play hide and seek and when they finished a round you would hear the smallest voice saying "find me".  Grace then took to holding Lily's hand and hiding with her to feel a part of the whole group.

We went to Walmart one day and purchased a new two wheeled pink razor scooter for Grace based on her behavior tickets and she passed the three wheeled princess scooter down to Lily.  We also bought cousin Taylor's fifth birthday present.  ( yes he is that old, hard to believe Kindergarten next year)  We replaced the shower rack in the master bathroom, got some construction paper and some eggs for the girls and my classes respective Easter activities.  We also ate a picnic lunch of chick-fil-a and later went to Menchies for some yummy frozen yogurt.

We had a playdate with our friends that do not live on the street but would fit in greatly and the older kids took a walk down to the lake(Thank you Ms. Lara and Mr. David for being adventerous)  The girls stayed up late, slept late and ate a lot of food(some not so good)

Daddy had to work two of his three jobs, but took the day off on Friday for some family fun time.  We went to Menchies again, the blockbuster that is closing :(, and back to Walmart.  We played outside and in, we cleaned and did laundry and had dinner with friends.

All in all it was a great week.  Unfortunately we had a leak in the master bathroom that caused a drip in the family room which left a hole and now we need some new insulation.  This week we found out Tom has been furloughed 5 days over the next 4 1/2 months as well as 10% cuts in his office's budget, and in September probably more furlough days and possible bigger cuts.  Lily has her MRI and CT scan hanging over our heads which means no wedding this coming weekend for us.  And summer is coming which means my paychecks come to an end for a couple of months.  

So hopefully things will get better quickly and calm the ($*#%@* down.  Until then pray for Lily to be miraculously better and no surgery or catherizations will be needed. That mommy and daddy don't go crazy with worry and Grace gets on pink(behavior chart in which she gets tickets instead of money).