Lately

We have had a whirlwind of activity lately.  Unfortunately a lot have time has been spent at various doctors offices.  I have been going to the chiropractor to help relieve the stress that I carry in my back.  Lily went for her 30 month and sick visit to the ped and then the ENT to hopefully get rid of the nasty sinus problems.  Unfortunately the medicine isn't working out so well, so after 6 days we are changing to a 5th antibiotic in 3 months and NO ONE carries it.  Now the medicine before was extremely hard to give her because it tasted awful and yesterday she started vomitting which is a side effect, but it could also be she caught a bug from school, no real way to tell at this point. 

Oh and it was Saint Patricks Day.  Nope I have no pictures of my girls in their cute festive attire because well, Lily wasn't dressed when we took Grace to the bus and had to be changed around 12:00 when she threw up all over the school floor.  I have no pictures of what the leprechaun did in my classroom because, well Lily threw up and everything else left my brain at that point.

Grace was the top fundraiser for the first grade for Jump Rope for Heart and got to eat Chick-fil-a with the PE coaches.  She has also made it into the AIM program which is for the gifted an talented at her school, that officially starts next week.    She is super excited because most of her girlfriends in her class already go to AIM and now she will go with them.

Tom has been busy working his three jobs outside of the house and worrying about his girls.  I have been busy getting lesson plans ready, looking for a sub for Lily's MRI and CT scans and working on recital dances.  We had to replace the seal on the master bathroom shower, and one day soon we will have to paint the ceiling in the family room.  I need to clean out more stuff and go through Grace's old clothes to see what Lily will wear.  We have plans to go shopping for some spring clothes this weekend.  Grace's 3 inches are showing now with her clothes.  I swear I am not buying her any more pants, she NEVER wears them unless they are leggings under a dress or maybe a tunic.  So hopefully things will be calmer this weekend and we will get some sleep and cleanning done.

Hope you have a great one!

Catching up

So the first official day of winter break for me was Sunday Feb. 19th.  (I had to work the 18th.)  I awoke to a little girl running down the hall screaming  "MOMMA, MOMMA, MOMMA, Look it fell out!"  She came bursting into my room with the tooth in one hand and a HUGE grin on her face.  The tooth has been good and loose for over a month and she wouldn't let us pull it out.  Every night we would brush it, floss it and wiggle it until she couldn't take it anymore.  Every day she could be caught a wigglin that tooth.  It was her first tooth to fall out and she waited seven long years and almost 3 months for that sucker to fall out so the heralded tooth fairy would make her visit.

She then put the tooth in the pillowcase that had been mine, but frankly I do not remember using it ever, to await the tooth fairy's arrival and impending economic windfall that accompanies her.  Unfortunately for Grace the tooth fairy was rather poor and only left a dollar for that tooth.  It's OK though she was thrilled and ending up getting another dollar from the tooth fairy via Grandma Terry's house, she got to go to the American Girl store later that week and she got 2 new books from Daddy.  All in all she made out like a bandit.

I hope to always remember these moments that are monumental to her.  She is a ray of sunshine in some dark days and a great snuggle bunny, although she is rather bony.  I love this girl so much, toothless smile and all.  The tooth fairy had better start gearing up though there are two more in there that are waiting for the early morning hours to pop out of that girls head.

Four Years

Brendan Daniel

March 1, 2007

May you continue to watch over your loving family, knowing that we miss you everyday.

Not what I was expecting

So, today we went to the cardiologist.  Lily has routine appointments every 6 months since her surgery 2 years ago. You can read about the month here and the feelings the next year here.  I was hoping to get another great visit with positive news that I could glow about here on the blog.  Instead non-smiling sonographer clued us in that there might be something coming we really didn't want to hear. 
At birth Lily had a LOUD murmur.  Some babies are born with an innocent murmur that goes away with time.  Not Ms. Lily she was later diagnosed with Supra-valvular aortic stenosis and Pulmonary stenosis.  What this means is that in the two major arteries of her body she has significant tightness.  She had surgery at 4 months of age to correct this problem, the hope being that as she grew the arteries would grow also.  It seems that her aortic area grows as she grows but still has some tightening, this is a change from August where it was indiscernible.  But the pulmonary is the biggest problem, right now.  One Week post surgery before she was put in the step down unit after being in the ICU the sonogram had trouble finding the pulmonary branches of the artery.  So they did a catherization saw it, looked good went on to the step down unit and we were home 2 days later.  Well same thing is happening.  We spent an hour on Monday trying to keep her positioned for the sonographer to get a good picture of the pulmonary branches.  The sonographer was not  happy with the pictures, she couldn't get the angle and Lily was getting upset being prodded for an hour.  The pictures she did get showed some tightening in the branches.  In doctor speak, her gradient in the right branch was 78 and left was at 46, it needs to be between 10 and 16 for "normal".  Her aortic was at a 10 in August and was up to 26 yesterday.  There was no real pressure on the heart at this point, however it could get there eventually.  The doctor then started to talk about getting further imaging.  This can be done with an MRI of the heart and lungs, or a catherization.  Her cardiologist prefers the catherization since if there is something that can be done, they are already in there; this could mean ballooning of the artery or stints.  However if it is more than just a small section, it could mean more surgery.
So now we are not glowing we are waiting.  Her case file, pictures and pertinent information go to the panel.  This includes her surgeon, her intervention doctor (catherization doctor) and even the doctor who performed her last MRI will be there.  They will discuss her and decide which course of action they are going to recommend.  So we know somewhere probably in the next month we will be headed back to Egleston at o'dark'thirty in the morning for sedation(she is only two and is NEVER still) and one of two procedures and then after that who knows.  We do know that after both an MRI or a catherization it is 98% she would come home that day.  Under 6 months they may stay the night of the cath.  We won't know even if she was discussed until next Wednesday.  I almost wish the doctor had fast tracked her so that we would know what was going to happen, but not being fast tracked is good news meaning she is in no immanent danger.  I feel that we won't be doing anything about it for a month. 
We had planned to go visit Granma and Poppop in Florida for our spring break, but who knows if that is going to happen.  I feel like I am whining when there is so much going on in the world that is larger than me, but I wasn't ready for this yet.  The doctors had told us about scar tissue and large growth periods and when they would watch her more closely, it is not supposed to be now.  And yes I know in the scheme of things an MRI or a cath are not that big of a deal, but I am freaking out a little.  I mean heck we can't get her to sleep alone through the night in her own bed for more than a week.  I know I coddle her but wouldn't you?????  How can I say no to my baby who has been through so much and will go through so much more when she says "Momma sleep me" meaning she wants me to lay down with her until she falls asleep.  Or how do I not comfort her in the middle of the night when she just wants to cuddle after a bad dream?   Having lost a child only I knew and held for only 20 gestational weeks, I can't and don't want to think I could lose her too.  And then there is Grace, what do we tell her?  She doesn't need to know, but I know she feels our stress and is affected by our diminishing moods.  When they say depression affects everyone, oh YEAH IT DOES.  Even if not clinically depressed, worry, stress and the winter blahs can make things bad. 
So for now, we are not discussing it, but we are, and we are hoping that a little sunshine and a special Daddy's birthday celebration on Friday will pull us up out of the dumps and keep us going til more is known.  So it is off to the outside we go and maybe we will make it to next wednesday.........

It's HEART month!

Yes, yes I know Valentines day is more than a week away.  But I am talking about your actual heart.  Heart disease is the number one killer of Women, more than all the cancers combined.  Now I am not downplaying cancer, Cancer is a HORRIBLE thing.  But it is heart month, and my baby is a CHD kid(congenital heart defect).  Her Grandma, my mom has a heart that beats to its own drummer and drives Grandma crazy when it goes out of whack.  Her great grandmother died of stroke after quadruple heart bypass surgery.  My baby's daddy, aunt and grandfather all have hereditary high cholesterol.  These are all very bad things.  Leading me to this, while it is heart month, please think about the health of your heart. 
Grace's school is doing Jump Rope for Heart which raises awareness as well as money for the American Heart Association.  Build-a-bear is running a promotion with Children's Heart Foundation which is an organization that works closely with doctors and hospitals that deal with CHD kids.  Lily has her 2 year post operative visit in two weeks,after which we will be going to build a bear to get a bear and donate too. Aunt Molly works for the American Heart Association in California, which means she is far away but is full of info and is also a CHD kid herself.  So if you need to know what to do, I have some resources for you.  But most of all think of how to keep yourself healthy and you heart beating so that your LOVE day can be full of HEART.
Talk to you soon.

The Winter Blahs

So after a gorgeous weekend of 70 degree weather, we are back to the blahs.  It is in the 50's and rainy.  I know it is better than the below freezing snowed in days of two weeks ago, but I am ready for spring.  Ready for the renewal, the vitamin D, the playing in the street, riding bikes, sidewalk chalk, bubbles and short sleeves.  I know with all that comes the sneezing, itchy eyes and general allergy pains that it seems both girls are going to inherit. 
I am hoping that as the girls get older the allergy problems will get better.  So far Lily has had hives for some unknown reason, was put on a nebulizer for 5 days of treatment along with steroids for wheezing in her chest and both girls take prescription antihistamine: Allegra for Grace, Singulair for Lily.  We have cool air humidifiers for the winter, air purifiers for the rest of the year.  We dust and vacuum the girls rooms each weekend and they can only sleep with washable luvies.  They take their baths at night to wash off the allergens before bed.  And yet they still have issues, Grace's retreat to her upset tummy and Lily has had cold symptoms since October. 
This all leads to the blahs, dreams of warmer weather, beaches, Disney and various other vacation wishes.  If only................ 

A giggle or two

This was shot with my iphone over the Christmas Break in Florida, make sure to turn the music down at the bottom of the page.