Sun is out!

The sun was out this morning and all 3 babies had a solid nights sleep despite the situation.  For me that means good day ahead!!

Good news is what we got, count was up to an 18 and doc is sending us home.  Today's report was very positive and it left me with a feeling that this time we win!  We are hopeful and just like all medical situations it's a roller coaster, one day seems terrible and the next not so bad.  So while we are up we are up! Next time they check will be Friday, they need to allow the body to do its thing.  Keep the prayers coming for another big jump.  Doc says get levels back in 40s we are in clear and then normal range we are rocking.  

See you later hospital! Once again we did have the best staff and have so many good things to say about our Children's hospital.  Something about being surrounded by people who love working with kids! 

In other good news, you have to hear Maugs sing twinkle, twinkle, little star!

Keeping our heads up...

New week but unfortunately it did not start as I had hoped.  We were positive and ready for the week.  A scheduled blood check at 8am and then the call around 10am that levels were back very low.  Ugh.  I have always been honest, while I remain positive and will continue to do so this stinks.  While packing I talked with the God, I think this is enough.  We can and will fight through but please no more. 

As you walk these halls and hear these sweet babes cry all night, I'm reminded people have it worse than me.  We are here with home insight, she is tolerating all of this, she slept all night, and life will go on.

Making the best of situation post treatment, wagon ride around the halls. She loved it! 

So the update:

The first treatment esstentially did what it was suppose to but the body did not respond with platelets. So we have to try something else and today they treated with IVIG.  This time essentially flooding her system with antibodies that will help protect the platelets and allow her numbers to go up.  With ITP we esstentially are trying to fight the bad antibodies so they die off, we just have to start winning so body can fight them off.  At this point still treating the ITP and diagnosed with just that.  They think the minor cold she caught aided in triggering this low count again.  Good news is white blood count and red are where they should be.  She is hanging in there and did great during the 6 hour treatment.  No negative reactions which was a positive.  Lots of sitting.  I was covered with just about everything by the end!

This Mary is tough and I know my Granny (Mary) is watching over her.  My Granny hated hospitals so she won't have us here much longer! 

We are praying this does the trick.  Doc was very optimistic.  She has no indications of leukemia and at this point that is still not a major concern.  

As in any medical situation one day at a time and we have to work through all the treatments to get our answers and fix. 

We are keeping on.  EK had her first swim class last night and loved it!  Margaret is happy, happy!

We will have an update this morning and the journey continues.  We can not thank you all enough for the love, support and prayers.  

Hoping for more of times like this ahead.  A little toes in hot tub post swimming workout!

*sorry for spelling errors (you may be use to them) I'm typing from my rubber bed, in the dark,and from my phone!!

Did that really happen?

We had one of those weeks that you just want to act like never happened.  We survived and I truly kept telling myself, it's all about ups and downs and this is down so the rest has to be up. 

So disclaimer my poor baby looks like a hockey player, one of those when you see you wonder where were the parents when that happened? Answer is right there.  

So last week Monday Matilda fell off her kid size table head first. Jay could not grab her quick enough.  She had a goose egg with bruising and really the next day looked better. On Wednesday her and Margaret bumped heads playing, nothing crazy but Matilda's head instantly swelled up.  We both were concerned but also trying to not over react.  Already set to see doc for ears on Thursday we had it checked then.  Doc didn't like look of it but felt after examined it didn't need to be drained and no signs of concussion.  In the next few days she did throw up a few times and we thought maybe she had flu.  Then things seemed to be better Sunday until Wednesday am.  

On Wednesday she was up super early, while changing her in dark I thought her face looked different. Turned on light and she had these little red dots on her face, some faint but looked like broken blood vessels.  Momma instict took over and I felt something was wrong.  Text a pic to doc at 6:15 and she knew what they were.  Asked if she had a crying episode or choking as those could cause them.  Said no and she made appointment for me at 8:20am, they drew her blood and would call us.  Jump forward to 10:30 and we were checking into Children's.  Momma was panic and Poppa thought just more tests.  As the docs start taking I'm pretty sure we were both deer in headlights now.  Stay could be a day or week, concerns of internal head bleeding, concerns of ruptured blood vessel behind the eye, if she would have gotten a cut could have bled to death....what is happening.  We all know this but never take good health for granted.  They other side is so scary.  

The staff was fabulous and made it all as pleasant as possible.  Nothing worse than seeing your baby cry from pain of needles and tests.  We stayed strong and  optimistic as possible all day.  

Updates came and so far good news.  No brain bleed and no bleeding behind the eyes.  She was diagnosed with ITP, caused by some virus she caught that ended with producing bad proteins that were eating her platelets.  The head injury had nothing to do with it and doc says wasn't healing because of low platelets.  Very lucky that head did not break open when she fell or hit heads.  So the bad fall actually helped put our gaurd up to catch this.  Still Wednesday now 4ish, they get her transfusion ready.  She was treated with winrho.  About an hour or so later you could see her body reacting. She spiked a fever, chills, and then got sick.  Doc said a sign her body was reacting.  Once through that bump, she was one tired babe.  Huge blessing was that she slept all night peaceful at the hospital.  My rubber chair turned bed was as you can imagine. I really was not worried because my baby was sleeping.  

Next day theydrew her levels right away, 6:15am.  Did I mention best night nurse ever, she took vitals 2 at night without waking her.  We got up and dressed, cleaned up Whike inside praying hard that we would have good results.  Doc came in at 7:30, her levels were a 15.  Doc wanted a 20 but this was good improvement and safe enough to go home.  Relief.  As you can imagine we were surrounded by sick kiddos so news of home was very welcomed.  

We had to go back on Friday, up to an 18 so next check Monday.  We are hoping the levels keep upward back to normal range and this is a one off situation.  However we won't know for about 6 months of monitoring what the final verdict will be.  Optimistic and back to normal life.

So normal that we had to take Margaret to the urgent care last night before we left STL for what looked like her lip was caught between her teeth.  She was playing with a buddy pushing the crazy coop and he pushed car towards her and hit mouth.  Doc thought so to but when he went in to numb it was actually just already swollen... Ok black cloud I'm done with you!!!

Valentine Day(s) Fun

Mighty Margaret

She may be little but everything else about her is mighty.  Say she isn't doing something and watch out she will do it, with a smile! 

She has battled the worst ear infections and thank heavens for tubes because she is still draining.  After a doc visit last week, back on the drops to help move it all out.  Our doc said "she is all around a miracle baby, can't believe she is such a happy baby with all the ear pain she has to have".  

Last week we met with the OT and she had a few concerns about Maugs not walking or standing alone yet since she had been pulling/pushing for awhile.  We noticed her shoes to be small and I had decided to change up the shoe.  Ordered her some pink chucks and one hour in I swear she was standing and walking with better form behind things.  Who would have known!!  Poppa and I couldn't believe it and MM has same reaction.

Then tonight she took her first steps by herself!!!! So not expecting it she took 3 good steps to of course Poppa (her favorite!!!)! We were all so excited!! EK so much that she ran for her camera to capture more.  

So Matilda still doesn't walk 100% of the time so Maugs may walk before her. Mighty Maugs, just when you think, should I worry she surprises you.  Love that girl!

Lots of LOVE!

Poppa did it and...

Another Poppa creation!

Paper roll for the playroom. EK loves it!

He is so good at the details!

And Momma and Lulu did it!

It's about time I learn to make bows! We of course got better and better as we went. Love bows!! 

Winter Wonderland

We had a snowy week last week with 5 school snow days in a row! Thank heavens for a next door nanny who doesn't take snow days.  Even the University shut down for 2 days which meant builder had to go in early and stay really late.  Not sure how I feel about everything shutting down these days with winter weather, are we getting wimpy or just having to be overly protective?  I see it as this, it is how things are changing so got to roll with it.  So all in all snow days are normal days for me but man oh man after that many days in the house we are ready for a warm day!

Snow eater!!

Few minutes of fresh very very cold air felt good! 

EK picked the matching hats for her and poppa.  Always wants to help shovel or eat snow and watch!

Everyone got outside! We didn't really move from front walk because under the snow was ice, all the men fell shoveling our driveway, ice is the worst. 

The girls had a great week with Gia, making snowier cream, playing with snow in the bath tub, making necklaces, and baking.  Lucky to have her and Bah!

Ended the week with a weekend of Lulu and Poppy! Oh and more snow on Sunday! 

Back to school this week!!!!

Little billy goat

aka Mary Matilda! Any chance she gets this where you find her...

She is fast!

Pushes the chairs around (can so walk but still prefers to push something) and then climbs up. 

Her favorite spot! Up the stairs and you always find her here. 

Ask her if she wants to go to her chair and pure excitement as she scurries over. 

Upside down! 

Loves that white purse, carries it around on her wrist. Too funny!

Find Matilda! Love this little wild little climber or as we say little billy goat.  

Baby Bump

I again am not a fan of belly pics but I continue for two reasons; I did for the other 3 and I don't live near family so this way they can see this growing bump. 

Momma Hen

The best two words to describe this sweet baby! She is so nurturing and caring it's almost scary. She changes diapers, always says "I got them" and of course does some bossing. This next tiny babe will be smothered by her love!

Yes she thinks 2 babes is the norm!

Shopping and carrying the coffee she insisted I let her hold because mommas drink coffee. 

She is so loving.  Melts my heart. 

Momma's do laundry with helpers. 

She's so good at making them laugh.  She will say "I make them happy!!"

In her words "best pals"!!!!