Day 483: It has been awhile...

All has been going well so far: Miabelle's 1st immunizations past with nothing to report, her second set of immunizations past with nothing to report.  Miabelle and Noelie started ballet class (as seen on the picture above) and 1 day of school a week, which has been lots of fun to see them interact with other children.  The cutest thing of all was when Miabelle went to the playground for the first time 2 months ago, the look on her face when she saw other toddlers was priceless : "What do you mean we are not alone?".  Both girls are so happy to see other children and the smiles on their faces when they see and interact with them is heart warming.  Normal life feels good, although the first day I went back to the office after 1.5 years working from home was a big thing.  Mama had tears, the girls cried as if I was never coming back and personally I had the feeling of a toddler going to school for the first time (separation anxiety big time).  Believe it or not but we do miss our cocoon, the Cincin Angels and Cincy a lot. Being back in the NY area is great although we have not had much time to see many friends, which with time we will get to do (sorry).  Yes, it has been an excellent two months with lots of laughter, tears of joy and full of happiness.  It's good to be back and to pick up where we left off.

However all good things have a start and an ending... and a start again and most likely an ending and so on.  It has been awhile since we heard Miabelle cry, regretfully we had to hear it a few more times today and in the past week.  Needless to say her cries pierce like nails through our minds and hearts reminding us of the dark days.  Miabelle got her first post-BMT cold (second since she was born) 10 days ago, Noelie got the same cold.  We were "excited" (sarcasm) that finally we would get a small test of her immune system.   Would her immune system be strong enough to protect her and comparatively to Noelie how will her system cope with it.

Two weeks ago on a Thursday Miabelle and Noelie started to sneeze and have stuffy noses, that Sunday she started to cry and complain about her ear.  I was on watch while Mama had a weekend off, I must say that I was panic stricken: Ear? Infection?!! What now?!!!.  I called the doctor on watch who recommended giving her some Tylenol to ease the pain.  A few hours later Mama (the cavalry) arrived and we decided waiting it out and see how it progressed. But by Monday she ran mild fevers and things were not improving.  Although Noelie had similar cold symptoms she did not have fever or ear pain.  We rushed Miabelle to the doctor on Monday morning where they informed us that she had early stages of a double ear infection, very common for kids with colds.  Both of our todds were prescribed antibiotics for 10 days.  This past Thursday we stopped the anitbiotics and all looked fine, on Friday we went for a checkup which confirmed that the infections were gone and that both Noelie and Miabelle were in the clear.  We were in cloud 9, both girls were healthy and Miabelle had survived her first infection.  Her immune system was working!!!!

Regretfully, on Saturday morning Miabelle started crying again and complaining about her ear again, yet Noelie showed zero signs of a cold.  Both V and I got really concerned.  The antibiotics didn't work? The infection is back within 24 hours?  Again mild fevers?  Does this mean that her immune system even with anti-biotics cannot fight an infection?  What now?  Stress stress stress!  We rushed back to the doctor this morning who confirmed that Miabelle had again an ear infection and was prescribed another 10 days of a stronger antibiotic.  Happy feeling gone!  She ran a mild fever this evening but by bed time she was fine, just cranky a la Miabelle, which truly means sucking her thumb and begging to be held.

The good news is that Miabelle's medical staff, which we emailed, are telling us not to be concerned at this time.  Many toddlers experience multiple ear infections in a row and that we should not read into it that the immune system is not working.  Just wait things out but to inform them if she takes a turn for the worse.  So we wait.

Also, Super Noelie is doing extremely well.  Like always she is an extremely caring and loving sister.  "Papa... Mama, Miabelle has ouchies" and then she runs over to hug her.  Last night, aka Pizza and a Movie Night, we watched the newly issued Disney Movie "Tinkerbell and the Secret of Wings".  (stop reading if you have not seen the movie yet) The story talks about two fairies, Tinkerbell and Fairy Winkel, separated at birth who during the story get reunited.  Long story short during the movie Tinkerbell breaks her wing and her sister saves her.  Mama was in tears when Miabelle said "My wing is broken" and Noelie answered "Wait...I fix it" and they role played the final scene of the movie.  As parents we cannot be prouder of our girls, they care about each other more than anything in the world.  But Noelie, being the older one by 1 minute, truly fills the position of bigger sister who protects her little sister.

Both girls are doing extremely well from a developmental perspective and are most of the time well behaved.  Today at the medical office a mother of twins approached me and said "wow!! your girls are so well behaved."  As the father I blushed, coughed, propped up my chest and said "oh Thank you.  They are sweet ladies indeed", taking obviously all of the credit (sorry Mama).  From a developmental perspective Neolie continuous excelling in absorbing all and everything very fast.  She will say things like "Let's go already, I have no time" or "Tell abuela, titi and mamie bo that I love them all day long"; she counts in Spanish, Dutch and English to 20; understands perfectly all three languages and now and then blurs out a word in Spanish or Dutch in perfect context.  She is a powerhouse in strength, sometimes a little too much, but based on her legs and strong bone structure she will follow papa into becoming a fanatic skier.  Also Miabelle is doing great, Noelie challenges her daily and she lives up to all of Noelie's challenges.  Miabelle's physical development is slightly behind, she remains stiff (typical for steroid treated patients) but just started to jump this week.  She is a top ballerina despite her muscles being stiff and she loves it.  With her mama-style petite structure and her passion for ballet who knows. She is also very studious and observes things from far but they all register.  The girls are doing great!

As to V and I, the fevers, the crying and the moaning took us back to the dark days, both V and I still have a hard time forgetting those days when Miabelle walked through the valley of death.  When I said "Needless to say her cries pierce like nails through our minds and hearts reminding us of the dark days", it truly makes our minds run in overdrive.  During the conference of the HLH Center of Excellence in Cincinnati last month (which I have attended in the past two years; I recommend every parent of an HLH child to attend) a psychiatrist spoke about Post Traumatic Stress and the fact that most if not every parent going through the HLH experience suffers from it in one form or another.  We experienced it this past 10 days and especially today with Miabelle still suffering through her cold while Noelie is cruising again.  Any signs, any infection, any belly ache... both V and I stress levels increase immediately.  Stress above and beyond: V went to bed early and I seek therapy in blogging... sounds familiar?  As per the conference, it will take awhile for us to learn to live with it but like the doctor said... you learn to live with it but you never get over it.

To all of those who pray, please say a little prayer for Warrior Liam who had a transplant a few days after Miabelle.  Liam's new cells' count has dropped (not good) and are showing fatigue in the the war of bloods.  He recently had a procedure done to boost cell count by injecting new cells from the same donor (his brother).  In addition he was just diagnosed with Rhino Virus (not good if it goes in the lungs or triggers HLH flare).  We hope that destiny, god, nature or whoever will give him that one chance to fight.  V and I follow his story closely: http://liamsjourney.com/wordpress/

We will try to post more often, but man! is normal life a busy experience... how do you people do it?  Cocoon... Angels.. Cincy... where are you?