Wednesday, July 31, 2013

True Stories Thursday (a little early)

Mary Louise loves to make *pretend* phone calls:

Hello? Uncle Collin?
Yes. How are you?
Umm...we're going to da docca taday so day can yook at me...den we going to da dentist so dey can yook at Evie's teef.
Yes. Oh. You at work or you at Mommom's house. Yes. Ok. Mommom at exa-size or is she at home? ok.
Yes. You doing ok?
Good. Wuv you!

and then:

Hello docca? yes. Dis May-wuhweeze-wuhbwan.
Yes. I need appointment. Evie. Yes. Check his heart.
You need ta yisten to it wiv a stefacope?
ok. 8 weeks until an appointment?
(she gets out her magnadoodle and scribbles)
hmm. yes. I think we can make that.
ok. Is Uncle Collin working?
Yes. and you need to yisten 3 times to Evie's heart?
Yes, I writing it all down.
Thanks. Bye.

ML: Mom!!! David's interrupting my priba-see in da orange room where I am playing. I dus need some priba-see Mom!! So I can pway! hmph.

ML: Hey Dad!! Dis a MMM mmm *emmmm* for May-wuh-weeze! (pointing to a random M on a magazine)
Everett kisses the phone when I talk to Brent while he is away. He also blows kisses to the kids while to climb the stairs to bed. Sweet boy.

(He calls every living furry animal a cat and can identify his belly button with pointing and his nose by sniffing when asked where his nose is.)

D: Hey Mom!! Does dis say "bolcano"? (and it did - it said volcano - David had been practicing the letter "V" and early reading skills on the IPad.)

ML: (holding David and Everett's hands in hers before eating dinner) Now boys, you need ta yisten to me. We gonna eat our dinnah and Mommy will be so happy. It's such a nice dinnah. See. (eating some) Mmmmm! Nice dinnah. ok, now you try a bite.

(David tries a bite. Everett watches, grinning.)

D: MMMM! Dis is so good! I'm eating!

E: (starts shoveling)

ML: Very good boys!! You eating all you dinnah!! MOM!!! Da boys are eating all dere dinnah!! It's so good!!

Brent recently won an I-Pad Mini at a meeting. We were so excited to use it - especially with David who has responded very well to electronic feed back during school and therapy sessions. I downloaded some apps for the kids to see how they would do. Between David and Mary Louise, they have yet to miss a phonics or letter question!! It's been really wonderful to see how much they've retained from just random lessons on letters and numbers.

They will be home again this (school) year. We have a truck load of reasons for not enrolling them in school...perhaps I'll discuss them in length later...but for right now, this is just the best thing for them and for our family. I am in contact with our school of choice and am patterning lessons and year goals after their program. I feel very lucky to have such wonderful community support as we enter a more formal weekly schedule and more uncharted territory.

As for future years, we'll see! Right now, we're just exploring this one (year)!

We went to an allergy consultation today at our pedi's office. There has been some confusion about appointments, doctors (who will manage Mary Louise's allergy care) and where and when all of the consults and testing will take place. We've ironed it all out for now and made it to an in town (win!) appointment this morning and will have an allergy (scratch) test done on the 16th. From there, we will know if allergy shots will benefit Mary Louise and reduce her seasonal symptoms. I'm begging for a big fat "no"...but we'll see.

We had a really good day considering Mary Louise had the appointment described above, then Everett had a 1pm dental check up. I had all 3 kids in tow and was prepared with my enormous red bag (sheesh I love red) full of tricks to keep the "waiters" entertained while the "patients" were seen: Ipad with phonics, early reading, spelling and math games loaded and ready; crayons and markers for the table paper (that stuff is a great canvas!), easy hand snacks - dried fruits, protein bars and nuts and gum as a last resort.

We had just enough time between appointments to have a picnic lunch followed by a 30 minute run around at a nearby park.

Then off to the pedi dentist (one of our many doctor office homes). The big kids love their dentist...well, they don't mind the actual dentist, but really, they love his office. It's a super neat train themed set up complete with a playroom attached on the side made from an old caboose. There is an electric train that runs around the exam area non-stop. All that and the fact that Mary Louise and David leave with literally a bag a swag - toothbrushes, toys, toothpaste, stickers - each time they go makes it a happy place for all.

They were so sweet with Everett - giving him a pep talk pre-exam:
ML: now, Evie, it's ok to be a yittle bit nervous about the dentist. But it's really nice. See the trains?
D: Yeah!!! See da trains!! Hey yook! ANOTHER TRAIN!!

Everett did well and only fussed a little when the dentist needed to get a little closer for a better look at the concerning tooth.

The verdict: NO CAVITY!!!!!

Everett's tooth may not have formed quite right and just has an indentation on the front. Right now, there is no cavity - but it's a very likely spot (due to the pitting) for one to develop. So, we must continue to brush often (at least 1 to 2 times daily). We are already flossing as his bottom teeth are close together. Sweet boy is a great sport about it all - mostly because he wants to be just like his big brother and sister. We will also add a tiny dot of OTC fluoride gel via Q-tip on the pitted area for extra protection until Everett learns to properly spit fluoride toothpaste post brushing.

After the dentist, we came home. Mary Louise and David begged for a viewing of Bubble Guppies. I obliged and after their 30 minutes of couch time, they played and played and played until dinner.

They ate SUPER well: brown rice mixed with scrambled eggs, sesame oil, Bragg's liquid Aminos, and green peas, some left over round roast, and fresh beets - they ate the beets!!! Well, Mary Louise ate the beets. David ate about 3 bites - I'll take that - and Everett ate a few beets, half his eggs and rice, then finished his roast, got seconds and pulled roast off of ML and D's plates (and he's nursing again now).

Again, I'm just not sure about that iron...testing for that next week!


Sunday, July 28, 2013

Medical updates

David is doing very well - no real updates or concerns right now. He continues to use his preventative inhaler (Qvar) before bed and takes his vitamins, probiotics and elderberry syrup in the morning. That's it! (yay!)
Mary Louise is in the middle of check ups and meetings with a few specialists. (Pulmo, ENT and allergist)

We had a visit with the pulmo last week and I am very happy to report that we have been able to reduce her preventative medications to just one puff of Advair daily until September. We will go back up to twice daily then as it will be RSV and flu season and she'll need the extra protection. She'd had immune function testing during her last visit with him and he reported everything was normal and very stable so her respiratory condition is uncomplicated by secondary factors.

We are participating in a few activities this fall(ballet classes for one), but must remain very mindful and weigh our winter outings carefully to protect Mary Louise and David as best we can. Their immune systems are becoming more specialized and will continue to develop over the next few years. Preventing any further serious illness or hospitalizations is one of our top priorities as doing so can offer our sweet big kids the very best long term heath outcome.

The doctor spoke with me at length -discussing our plans socially and medically to formulate the best road for Mary Louise. It was a very positive visit and he is pleased with our decisions and progress so far. He asked that we consider a beach vacation (we have one planned) as swimming in salt water works wonders for asthmatic patients with seasonal allergies - helping their sinuses to clear and reducing inflammation. (ha - I can't say I mind that sort of medicine!)We will have another check up in 3 months.

P.S. precious girl is 30 pounds 15 ounces as of last week. WHAT?!! we have a 30 pound kid in this house!!

Everett went in for his (late) 1 year check up last week. It was a circus with all 3 kids in need of some sort of immunization. We vaccinate - but do a very mixed schedule. Mary Louise and David reacted, in some way, to every shot they had - typically fever and pain, general malaise - so we only give 2 at a time now. It works for us. Our doctor is supportive. But it means I am trucking back and forth to the office a few times extra to get things done. Anyhow...

This was the very first time Mary Louise and David have reacted - emotionally - to shots. Keep in mind, these kids have been poked and prodded more than some terminally ill patients I've encountered. They have a history of not even flinching - much less fussing - for shots or blood draws.

Yeah - those heart breaking quiet days are apparently over. Those 2 were WILD. So much so that I'm pretty sure the office breathed a sigh of relief when we were finally able to cart the screaming banshees out of the door. (Gracious thanks to Mommom for helping with the wrangling). Mary Louise tried to escape at one point. David tried to kick me in the face a few times. I stood wide eyed and drenched in sweat when all was said and done. Good times.

Everett has a concerning spot on one of his top teeth so we'll be making his first appointment with the dentist next week.

He is on the petite / normal side at 20 pounds 15 ounces and just over 30 inches long. But he's growing just the same.

The doctor did a routine CBC (general bloodwork) and lead screening. The lead screening takes a day or 2 as the lab does them in batches. I didn't hear anything yet so it's either normal or I'll hear something Monday.

The CBC was very concerning. Everett has moderate anemia. The cause is, as of now, unknown. We have started a prescription supplement (though the insurance company lists it as an OTC drug so they will not cover it and I have no appeal recourse as the classification is preventing the coverage...could someone please explain that to me?! It's not very expensive - so that's not the issue - it's the principle: We pay for the policy. The policy should cover NEEDS. This is a need. It should be covered. I've spoken to 2 pharmacists. There is no OTC med that comes close to this and this is, in fact a prescription medication.). We will have repeat blood work done in 2 weeks time. The expectation is that, if he is simply iron deficient, the lab values will show notable turn around. If not, further testing is warranted and there are a couple of pathological processes to rule out.

I wish I could say that I am not worried at all...but I am terrified. The idea that something might be awry with that boy makes me ache inside, makes my brow furrow uncontrollably, makes my lips draw into a permanent slight frown and my shoulders tense. I want to shield him (and Mary Louise and David) from all that makes life difficult at times. I haven't succeeded with any of them of course - that want was poo-poo'd from the moment their cells became an organized mass for goodness sake. But the want is still there. It's not just that though...this is Everett:

It boggles my mind that anything could even be off with that child - much less "moderate to severe"ly off. It just doesn't make sense.

Truth be known, I thought about asking for repeat blood work right there - thinking they might have accidentally switched the vials somehow...I just don't understand...

So, we are giving the medication as prescribed (ICAR) and focusing on an iron rich solid diet as much as possible. I spoke with the lactation consultant where the kids were delivered about whether or not increasing my iron would help. She couldn't find any particular research stating it would, but said it would make sense that me taking in more iron would increase the iron in my milk. So, I'm do all I can with regards to my diet as well as Everett still nurses a considerable amount of time (though I can't say how much volume he's getting...) (oh, and because this is a hot topic in breastfeeding discussion groups: Breastmilk is not considered a "high iron" food. However, the iron there is much more easily absorbed which makes it nutritionally sound and, in most cases, supplementation of vitamins and minerals is unnecessary.)

In 2 weeks *sigh* we will have more answers...and hopefully not too many more questions. I'll, of course, update here...


Saturday, July 27, 2013

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.


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.


Tuesday, July 16, 2013

Sometimes we go a-visiting

We skipped town for about 10 days of visiting friends. Yep. We have friends... and they are, well, fabulous.

I've often said that I'm a passive flake: I don't answer my phone that often, I have been known to avoid social events just because I'm tired and I'm really just fine by myself. I'm a rather natural homebody and with computer access, I can literally get all of the social interaction I need just by answering email. The friends I've kept through the years are so much more than simple acquaintances or a few phone calls. They are family in every societal sense. These are people I can see after years of no contact, say nothing, and they know just by a smirk or slant of my eyes what I'm thinking.

We stayed a week with Nanny Pan (Amanda). My family has known hers for decades. She and I (apparently) met at the ripe old age of 2. She has been by my side through every. single. major event in my life. Every. one. (and most of the minor ones to be honest).

Oh the months I've been waiting to meet this squishy face!:

(sweet Wade - just a few months younger than Everett. So much fun to watch them play!)

A few days into our stay, this precious face appeared: "Miss Alisha"

Little did we know the years of friendship that would result from that fateful day she joined our 4th grade class at St. Matthew's, got seated behind me, and I followed my mother's instructions to, "always be nice and introduce yourself to any new kids".

It was a good week filled with the feel of home and simple fun. We went to the park, the nature center, did a 5K race and just visited - lots.

Just a few favorites:

ha! this is how we do nature centers!

My proud walker!

next in line!

Impromptu family floor time:

First thought when I saw this pic: Yay! David for sticking your tongue all the way out!

Proud Momma:

Love these guys!

and these gals!

Race day/ leaving day (taken during the first mile - no. I don't always look so happy running):

On the way home, we stopped for the night at my friend McCall's house. You can *meet* her yourself: here. Though we were pretty tired, and the kids were wild, we did have a great visit and Mary Louise was in girly girl Heaven with Libby and Hollyn.

10 days gone and many MANY great memories made.