"Hanging in there"

My typical answer for the general "how ya doing?". And it's true. I logged into this blog for the first time in months a few minutes ago, took a deep breath, and started this. I'm not sure what will come through, but it's time...

We've had a time of monumental change and I needed to retreat to a tiny corner and sit for awhile. Process, love on the littles, and just be. Thoughts have been a blur, and I literally am unable to think 5 minutes into the future anymore (which, I'm finding is quite nice actually).

Everett had his last visit with the hematologist in March. Fully recovered, he is within normal limits for both circulating and stored iron.

Tomorrow, he has his first visit with a plastic surgeon. He has a rapidly growing granuloma on his cheek. It is (upon a dermatologist visit) thought to be one that continues growing rapidly and never resolves, is very unstable (as evidenced by Ev running into David on Sunday or so and bleeding and oozing just about non-stop since), and it needs to be surgically removed (meaning stitches...meaning scarring...on his face...hence the plastic consult). It is thought to be benign and the greatest concerns would be 1. sedation, 2. infection, 3. amount of scarring and 4. reducing chance of regrowth as much as possible. I'll post more here as I know more.

Mary Louise and David had eye check ups in January. They went well - very little change in vision. However, David's left eye has been wandering outward during exhaustion since I can remember. It was corrected with glasses to some degree. But the vision in that eye has declined faster than the right. I am now putting dilating drops in the unaffected eye weekly and patching as much as he'll let me (we play pirates...often...and super heroes...who only need one eye...and when all else fails, I let him watch a show I wouldn't normally allow (Spiderman). My favorite David conversation so far was the first time I put the patch on:

Me: Hey David? Remember those super cool pirate patches we got at the store?
D: Yeah!!
Me: How about you come and choose a color and decorate one. Then we can try it out and be rockin' pirates Bub!
D: OK!! YAY!
ML: I want to wear an eye patch!!
Me: ...
(David put stickers on his patch...I put it on)
D: Hey Mom! I can't see if you cover my eyes!

Sweet baby really doesn't seem to be able to see much out of that left eye...but we're working on it. We go back mid summer for a recheck...hoping for some resolution or at least slowed progression.

Mary Louise has had a couple of visits with her pulmonologist. He will see her again mid summer to hopefully stop all meds completely for awhile. This. THIS. is huge. She is taking 1 puff of Advair daily right now. No nasonex, no adenoid removal, no sinus surgery on the horizon...She runs, she plays, we've used the nebulizers once this year during the winter. Vitamins, probiotics, kicking dairy, elderberry syrup, local honey, nettles based allergy vitamin, shark liver oil immune boosters and the correct (CORRECT) preventative prescriptions. It's what's working. Each little step pushed her to get a little bit better, recover from illness a little easier, faster, stronger. Each brick is so important. And with the doctors seeing that with diligence, this preventative approach is well worth the outcome, perhaps hope will resume (because, let's face it, it is so very needed). The next time they find an ubber obnoxious wild eyed bear momma sitting in their office insisting that "it's just not good enough" and "my baby CAN and WILL be better - I just need to find the way"...perhaps in this critical but relatively typical situation, they can offer something more than "well, this med will work, but it's expensive (without even looking at our ins. coverage)..." or "you know, when people come to me, they usually just want a quick fix script - not a long term diet change".

Mary Louise and David will have their end of the year recital this weekend. David is nervous, ML is hard to contain and has informed David that he must NOT mess up her "big stage". Ha. Stinkers. They will have swimming lessons and a fine motor / handwriting course this summer. and....they will attend a Montessori preschool program 3 days per week in the fall!!! It's very small (15 students total), in home, and they are beyond excited to attend "real" school. I'm nervous...mostly about exposure to illness. But, developmentally, it's time for them. They are begging to try. Having an opportunity to get them into a program like this is a great blessing. So, we'll dive in in a few more months!

We've had another round of birthdays here as well...5 and 2 ya'll...5 and 2. 5 and 2...5 and 2...FIVE AND TWO!!



Mouth in the middle:




Ma Monkeys...




My greatest lesson: if you see a field of flowers...stop and enjoy...








and...you know...if you're allergy prone, perhaps have the appropriate antihistamine cream on hand post crimson clover dance...always learning...

xo,

Heather

Special days indeed

Special days take 4 have come and gone...well, we're still on David's currently but, you know, it is after 9pm. We celebrate Mary Louise and David's homecoming by allowing them whatever they wish on their anniversaries.

Mary Louise asked for a "Mommy - Meesey Day". Since she's been begging to have her nails painted, I took her to a salon. It didn't work out, however - she burst into tears and begged to leave as soon as we walked in the door. We went back to the car and she asked if we could go shopping (no, I'm not kidding). I asked where: The Mall. I asked what we were looking for: shoes, I dus want to try some shoes.

Umm. Ok. Mary Louise, I'm going to need to you go ahead and be slightly more girly. bahahaha.

We walked The Mall, talked and tried on shoes. I catered to her every whim and actually allowed her to ride on the little quarter (now 50 cent) rides, and eat ice cream. She literally tried on shoes at 5 different stores, putting each pair back in its box and moving on to the next - never asking for anything...until...she saw these little gems:

(yes, she spent the whole day in that leo and tutu.)
Bless her sweet heart, she insisted that David needed the red one. She was so proud when we got home and she presented him with his special gift.

They have begged everyday to play with those umbrellas.

My baby girl. 4 years home. Our beautiful miracle.
*****************************
David's special day was today. It coincides with my dad's birthday. We woke up, had breakfast and offered to take David to see a movie he's been asking about since he saw a short preview a few weeks ago: Turbo.

Brent and I talked ahead of time: if the kids could not handle movie theater etiquette, we would simply leave and have a wonderful day together doing something else. Attempting this with 3 kids 4 and under would be a bold move for us.

It worked far better than we ever could have hoped. Mary Louise and David did get a bit restless about half an hour before the ending - but just needed to move around a bit. Everett nursed a little then fell asleep and snuggled into my shoulder for the entire show.

The movie was so sweet as well. The underdog wins - BIG. Being different is so much more than ok - it's celebrated and encouraged. Brent and I grinning ear to ear over the soft downy heads of our babes - teary eyed with happiness. Listening to David and Mary Louise giggle and describe what they saw on that HUGE screen. Everett breathing deeply on my chest. Oh my heart was and is just so full.

Ya'll. We went to the movies with kids for the FIRST TIME EVER!!! How normal!!!

But the day had just begun. We left, stopped at home for a quick change, and were off to the university for some swimming.

I went last week to join there as Brent and I have signed up for a triathlon in a few more weeks. We'll be doing a relay: I am swimming and running and Brent is biking. Back to David's day...

We had the whole pool to ourselves! Mary Louise and David are gaining confidence quickly around water, can kick very well, float on their backs and put faces in while moving their arms. Everett is amazing as well - overcoming apprehension very quickly and attempting to copy anything and everything "the big kids" do.

On the way home, we asked David what he'd like for supper: noodles. (we occasionally get Chinese take out but this time, he wanted to eat there)

A family dinner around bed time - in public- could have been a complete disaster...but it wasn't. In fact, on our way out, 3 people commented about our well behaved children saying they barely noticed we were there at all!!

David was so proud. "Thank you for my special Day Mom! Wub you Daddy! Thank you!" big kisses and plenty of hugs sent our tired little superman off to bed.

Special days indeed.

xo,
Heather

The Birthdays of Men

Brent and Pops had birthdays this week.

When I turned 16, Nanny Pan (Amanda) threw me a surprise party. A party with friends, classmates and family. A wonderful celebration of life. I don't remember a thing about presents to be honest. I don't even know if there were any. What I remember is warmth and love. I remember going shopping with my mom and the outfit we chose together (I thought I was going to dinner with my friends). I remember the look on Mom's (Mommom) face when I got ready. I remember my dad - cooking dinner especially for me - and I didn't think much of it (in terms of him not knowing I was planning on going to dinner with friends) because he never really knew if we had plans anyhow. I remember Amanda's face when I looked at her after everyone yelled, "SURPRISE!!" She was proud that she'd carried out the planned charade.

I remember love. I remember the celebration of me as a person and the realization that these people came together because I brought them there. (ok - we were 16. There was a distinct possibility they were there because they *heard* it was a party. Romantically realistic. yes.)

I remember standing in the "family" room of the hospital where my dad died. Numb and devastated at the same time. My breath would not return to my chest for years. I literally could not inhale completely. Mom stood and looked around. She said, "he brought me you." It was the first time of many she would verbally thank Dad for bringing our family together - for creating us with her - and proclaim that no matter what happened in the future, she would not hypothetically change nor regret her past - because it brought her us. Not a day goes by that I don't think of that moment.

Brent and Pops had a simple wish: time with family. People, we made it happen.

Pops wanted a family meal.

We gussied and went out for a wonderful Sunday lunch. Then came home for coffee and dessert...and a whole bunch of playtime!






Don't think I let this crew get out the door without some good old group shots!






It was happy. It was a celebration of Pops - and acknowledgement of the gift he is to us. It was, simply put, a good day.

Brent's birthday was later that week:

Mary Louise and David helped with the cake - red velvet! and gift wrapping (we had so much fun)


(that's 38 - ha)

and you know there are plenty of willing hands around here for unwrapping!

and candle extinguishing


Even Everett helps!

(no - David does not have pants on. No, I didn't notice at the time. Yes, I do have to check everyone for pants before leaving the house.)

Happy birthdays to Daddy and Pops. Thank you for the gift of time as a family. May we have many more years of celebration together.

xo,
Heather