"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

Due

Yesterday, 4 years ago, I should have been delivering triplets...well, not really. When we found out we were expecting triplets, no breaths were taken between telling us "the news" and telling us due dates were really just arbitrary. Their importance lay only in telling us HOW early our babies would be born - not if they would be. Our babies would be premature. That was a fact. Typical gestation was about 32 weeks - though some mothers (who typically had previous pregnancies) made it to 34. 36 weeks happened - but was exceedingly rare. Our bottom line goal was to make it past 28 weeks with the babies each weighing over 2 pounds. That would give us the most positive outcome for all involved.

Part of me still feels like I should be snuggling with 3 - 4 year olds.

I had, I think, a unique perspective as a NICU mother. I'd seen the inside of those walls before - for the last 6 weeks of nursing school, I spent evenings in the NICU caring for tiny TINY babies. I had just enough experience and vocabulary to know what 24 weeks pregnant meant...and to know that we wouldn't have luxuries like holding, discussion of the social implications of long term nursing, arguing over co-sleeping and differences in upbringing. It didn't matter what outfits they had, what they would ride home in, if we had a room ready. It was quite simple: when one has a baby at 24 weeks gestation, there is really only one question: is the baby alive? well, is he? is she? now? what about now? still alive? ok...what about now?

I remember when I came out of my initial fog enough to see Brent's face - really see it. I have no idea what day it was or how much time I'd lost. He was changed. He was afraid. He was in so much shock. Every single family member or friend who came to see our babies cried. Cried. They would try to tell us how beautiful our family was on occasion...but end up sort of whispering, knowing that beautiful just wasn't really appropriate...because it wasn't. There were people that just came and sat and stared at me - or us. There really wasn't anything to say. It just was.

And were they alive now?

On occasion, I read things like this. I know how detached medical professionals can be. I relied heavily on that detachment to get through making heart wrenching decisions for our children. I watched as a nurse judged us and took jabs at us with medical terms and medicine dosing when we were just trying to have a moment's peace with Kuylen. I still remember the cold explanation when we rejoiced over a tiny TINY (1cc) wet diaper only to be told it was artificially induced by heavy doses of renal medications. I was angry. However, I remember asking "why" during school to the utter horror of my preceptor as I watched twin boys suffer for days before succumbing to their extreme prematurity. I know that the nurse was doing the same thing. The worry must have been there that she would be "stuck" caring for this suffering "lost cause" for shift after shift while we sat crying, wringing our hands and begging that he be alright. Her heart was pure, but her actions were just so bitter. I know that *the right* thing was done when we did discuss end of life care for Kuylen with the doctor and nurse practitioner. They saw us come solemnly into the NICU and stand staring at Kuylen. The doctor quietly asked that the NP stand by as they turned off the color skewing billi lights and quieted the machines. For the first time, we saw him. No matter how much we wished it was different, we both, I think, knew what Kuylen was saying. It was time. Those few moments and that one request by the doctor gave us a lifetime of peace about our decisions. If you just listen, they'll tell you. Children are born so wise. You teach the child the world. The child teaches you about himself - even if said child only has moments to survive.

Everything in the NICU has consequences - and many times, the "good" outcome, isn't really. The scars referred to in that link exist on Mary Louise and David's heels. Their skin would blister with certain tapes and adhesives. I worried about contractures and severe facial scaring from tape and skin tearing as we gained hope that we would be able to bring *some part* of our 2 survivors home. Though somewhat gratuitous, the doctor is right - people don't understand. How in the world can they? There needs to be support and explanation. There needs to remain a standard of care but also flexibility to assess individual situations. But medical personnel are typically ill-equipped with time and psychological training to provide such - and even if they try their very hardest, most people simply can't understand until they are there...or more often, in hindsight. Furthermore, those same medical "experts" can't be what we, as NICU parents really want: future predictors. They can't tell us with all certainty what's to come. They offer statistics and probailities - but for each and every number they offer, there are high and low cases - that's what makes the average true. There's always possibility fueling the everlasting pleading hope of the NICU parent.

Once home, there is more - so much more. You've brought baby home alive. Congratulations. You are now part of a mass machine of checks and balances and more experts to make sure sweet one stays that way. A system that is always on the verge of utter chaos and bankruptcy, corruption and politics. A system that is designed to help those in need, but also, unfortunately, those who typically lack voice. Enter mass budget cuts, insurance denials, maxed out finances. No where to turn.

The percentages, the outcomes, the quality of life conundrums - and at the center is the fluidity of the medical field and the religion. The religion we grasp and cling to keep in hopes that it can overcome the very science God allows us to explore and the technology that exploration allows us to create.

Most people have never seen the inside of a neonatal unit. They've never passed a tiny bed only to see a mound of fabric move and realize that a 1 pound human was just shifting in slumber. They've never watched with a smile as their child turned blue and had to be pounded and rubbed on the back - because sweet baby was just trying to learn to breathe while eating and regardless of outcome, you, as a parent were just so happy to touch the wee one for an instant. Unless you must, there is no way to personally understand the gravity of decisions made in the bustle of an eerily quiet but incredibly packed delivery room where the only sound is the weeping mother.

There are monitor beeps and ventilator rhythms. There are no cries, no coos and there darn sure isn't any question about "spoiling" the baby that "wants to be held again". Yet, the room is filled with children.

And...are they still alive?

Yesterday was my due date. 4 years past. Mary Louise and David and Kuylen are still very much alive. It is with the grace of humanity that they continue to each hold special places in so many hearts.

The other day I spoke to an IT guy about our router (I know - amazing. Sometimes, I can do things like that.) He asked about the noise level here and asked the inevitable: How many?

"3 at home," I answered smiling as I took the advice of a loved one who offered it so long ago as I struggled to continue to acknowledge Kuylen in a non-confrontational way.

He picked up on it immediately. "At home?" he asked.

"Yes, we lost a son and that is my way of acknowledging him."

And that was that - we moved on with simple explanation.

Thank you, IT guy.

Yesterday, we went for a run / bike ride at the nearby state park. David rode 4 miles!! Mary Louise rode 1.5 (!!) then the rest in the stroller. I walked / ran 3.5 miles with Everett and ML. Brent rode the 4 with David. On our way out, Mary Louise saw a deer we'd passed while riding.

"Das a Mommy deer I think."
"Oh? ok."
"What should we name her Mom?"
"I don't know, what do you think?"
"ummm....Fuschia."
"Mary Louise, did you say you wanted to name that deer Fuschia?"
 "Yes. That's her name."
"Of course it is."

That's my girl.

David actually cried when we put his bike back on the truck after he'd rode 4 miles. He wanted to "go wound da bwok and far far away AGAIN!" We were honestly worried he'd get over heated...but ultimately, his determination and get up and go attitude will take him as far as he wants to go.

Kuylen continues to offer quiet strength in times of need. I have gained empathy, compassion and tolerance. I know people see *just* 2. Though I still cringe slightly as I manage a smile response when some asks, "TWINS?!" (for the record, I still think it's a bizarre exchange: "Twins?!" ... (smile, slight affirmative head bobble), "I thought so." stranger goes on about their business - what is the point exactly? Can someone please explain that to me?), I understand what they see - and am occasionally (pleasantly) surprised when people pick up on my ambiguity in response.

Our children have scars - both physical and emotional (or perhaps, the emotional scars are more mine...). But, with careful encouragement and care, they thrive. They are, by all appearances, pretty typical - very typical. I wished for a day that they would be identified by who they are, and not by their extremely early births. At age 4, they are Mary Louise and David - the children - not the micro-preemies.

I'm pretty sure that day has arrived. Rock on kiddos. Happy due date!

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.
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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

True Stories Thursday

David: Mom! I don't know how to read these letters to make them fit this puzzle!
Me: Well, let's sound them out and find the matches. What is this letter?
David: Umm, uhhh, Duh, Duh, Duh...a Gee!
Me: Think about it David. "G" makes a "guh" sound and "D" makes a "duh" sound. You had it right the first time.

He puts it in the right spot. I cheer and clap. We do a "high five".

Me: Let's do another letter.
D: ok! I want to find the one that goes with the Guh Guh Guh...Grapes!
Me: Ok, well, we're looking for the letter "G" then. It makes the sound "guh" as in grapes. Do you see it?
D: ...
Me: here it is! (I put in in the slot)
D: VERY GOOD MOMMY!!! Good job!! You did great matching the letter and the picture!! (puts his hand up for a high five with a HUGE grin on his face)
************

Mary Louise: (whining)
Brent: Mary Louise. I just asked that you eat what you asked to have. Eat what's on your plate before asking for something else.
ML: But I don't want this! I want something else!
B: Then you shouldn't have asked for that. Just try it. Then you can have something else.
ML: (whining)
B: If you keep behaving that way, we can't go anywhere today. No one likes to be around whining.
ML: Something ELSE! (stomps her feet and balls her fists) you stop being mean Daddy!
B: Mean? I'm not the one whining and not eating. Maybe you should call Mere and Pops like you wanted to and tell them I'm being mean. Maybe they can help you.
ML: Mere and Pops don't like me! I can't call them.
B: What are you talking about? Mere and Pops adore you.
ML: I'm talking about Mere and Pops don't like me when I'm whining. I can't call them right now.
*************

Me: Mary Louise what is wrong?
ML: I feel angry!!! I have my angry face ONNNNN!!!
Me: Well, what can I do to help you find your happy face again? I miss my happy Meesey-pie.
ML: I don't know where to find my happy face Mommy! It's around on my body somewhere...but I can't find it right now.

I love that they can tell me how they feel.
*************

The big kids have fully embraced teaching Everett all they know. Furthermore, Everett has fully embraced the role of "student". It has empowered Mary Louise and David who I've heard, on more than one occasion, speaking softly but sternly to Everett about table etiquette, toy room manners and navigation of the house in general. They demonstrate, he watches and listens, he tries it, they offer constructive advice. It's amazing. The added pressure and responsibility of having a constant audience sponging in all they do has tailored their behavior in such a positive way. My hope is that they look back on these years with all of the fondness - maybe more - that I have for my baby bros.

Mary Louise and David are constantly asking about boundaries as well: Mom? Is this ok? Can we...? Are we...? Will we...? Is this how you say...?  They are spending less time pushing boundaries and more time understanding why they are there in the first place.
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And finally:

PEOPLE!!!! WE HAVE A WALKER!!!!!!!

Everett has been taking steps for quite some time - months in fact. However, he typically does so when he's set up - I place him standing, Brent sits with arms open waiting, Everett giggles the few steps in between us and so on.

Last night, Brent walked in and Everett suddenly got down from me on the sofa and crossed 2 rooms to get to his daddy! We were all so proud - possible none so much as Everett himself. He's continued his efforts today. He'll fall and instead of reverting to a crawl, he stands and tries again.

Growing babies, greatest blessings.

xo,
Heather

Back to it...

Happy Monday.

Within 72 hours of completing summer camp (which was absolutely wonderful), the entire family has snot noses. I really should have just made pedi appointments for this week way back in January when I signed the big kids up for camp. But, I wanted to be hopeful...and I still am as we're not THAT bad right now- in a snotty, "darnit, I don't have time for this" sort of way.

Hanging in there...

It occurred to me this morning that I'd never shared the kids' birthday party here. I'm somehow sure it doesn't need to be discussed or even mentioned, but I did not have the easiest of Springs. The luxury of mourning beat on my emotional door and I chose to let it in a bit...sigh on this.

We gave the kids gifts on their actual birthdays:

bikes for Mary Louise and David as well as "professional what I want to be" outfits:



"Docca Meese"

"on call":

her first patient:


Fire Fighter David:


and Everett got a "tent city":



From 14 ounces and 10.75 inches in length to a big boy bicycle and fire fighting dreams...from 1 pound 6 ounces and 12 inches in length to a big girl bicycle and healing the sick dreams...from having 7 minutes to live to happily exploring houses just his size...Bicycles, dress up and tent cities...it might have been their birthdays, but the enormity of the gifts I've been entrusted to love and protect has not, for one second escaped me...
****************

A few weeks later, we celebrated with friends and family at home - a big LeBlanc kid birthday bash!
Cake table: fireman cupcakes with green icing per David's request; ballerina cupcakes with pink icing per ML's request and a fruit salad with watermelon - our traditional first birthday celebratory food!




Party favors:


Mary Louise and David really loved helping to make everything!

I made clothesline garlands with pictures of the kids.


We had a ton of balloons. I made play-doh and put chalk and bubbles outside. We borrowed a small space walk from a friend. I bedazzled the mess out of some party hats - then totally forgot to force people to wear use them.

It was fun - a wonderful celebration. I still can't quite comprehend how we all of a sudden have 2 4 year olds and a 1 year old at home...

No matter how much time passes, I still have moments of such intense gratitude...for these precious moments we've been given...

xo,
Heather

True Stories

Last night Brent had a funny smirk on his face as he came down from reading the big kids to sleep. David's prayer for the night included the following:

"Please God, help Mommy to not be very very tired."
"Please god, help Mommy to not be too angry so that I can watch a yittle show on my TV"
***********

Yesterday, I was cleaning downstairs. Mary Louise stopped, looked at me with her hand on her hip and said, "Umm, Mom? Could you please stop all dis queening business uh-cause it's annoying us and it's hurting our ears."


*They are learning about their 5 senses at camp. Don't worry, I thanked the teacher for facilitating that little gem.*

Working together at camp:


***********

Everett saw that the gate was open when we were all upstairs. I went to get him. We made eye contact. He smiled and crab crawled backward toward the top step so fast I thought he'd surely fall. To my surprise, he stopped just short to check his placement with his toes before easing down the first step. That boy is processing his environment and all around him so fast it makes MY head spin. He just sat and giggled on the first step as I carefully bent to grab him tightly snuggle him.

When he was backing up, his faced looked a bit like this:

***********

Everett wore size 18 to 24 month shorts this morning. The waist was big, but his fluffy double stuffed Fuzzi Bunz diaper held them up just fine.

David wore size 24 month shorts this morning. The waist was big, but his Dapper Snappers held them up just fine.

Since Everett nursed and ate beef stew, roasted zucchini and squash for lunch, and David ate rice cakes, crackers and a little hummus for lunch, it is within the realm of possibility that David might actually wear Everett's hand me downs at some point...
***********

Last weekend, we went fishing at the nearby Minnonite catfish ponds. David, in particular, LOVED it (which makes his dear daddy wicked happy).



Mary Louise could take it or leave it

having a great time until that big fish came popping out of the water - which is when she would use Everett as a sort of human shield (he didn't mind):


Everett did a whole lot of this:

(you know, in between protecting his big sister)

and I picked up the slack. This isn't really my "thing" but, I surprised Brent by effectively holding my own and helping David out a couple of times. Photo proof:


xo,
Heather

Breaking My Silence

So a month has gone by. A whole month. A MONTH!! If I don't blog soon, I'll build it up far too much in my head and just stop altogether...I know - makes perfect sense right?

The kids are finally feeling better after a week with snotty noses and coughs for the big kids and a nasty tummy bug for Everett. There is an upside...I hesitate to put it in writing for fear that the old "if you proclaim it aloud, it will happen" rule will get us...but my mom says never to react or do things out of fear so here it goes...

We did NOT have to resort to nebulizer treatments!!!! In fact, we didn't even go to the doctor. Mary Louise had pretty ugly sinus congestion - and it actually STAYED in her sinuses!!!!!

Good grief!! and Amen!!

I'm not sure how much I've skipped over in the past month or 2 - but we have been wildly busy and I rarely re-read my old posts...so some of the following posts may be repeated information...

We went to the pulmonologist a number of weeks ago. He put Mary Louise on Advair as we'd already tried and failed with his first 3 suggested preventative med schedules. He changed a few things about our daily routine and wholeheartedly supported our daily probiotic use. We also use Elderberry syrup and local honey daily - increasing the usage of both during illness. He didn't know if either of those would help - but didn't mind that we employ them so we are continuing.

The Advair is wildly expensive. So expensive, in fact, that the doctor didn't even want to prescribe it - assuming we wouldn't be able to keep up with the daily or month cost.

But we have 2 insurance policies for instances such as these - so we got the script and the meds - and are hoping the big kids will get to keep their secondary policy for another year as their cases are being reviewed once again.

Within days of her first dose of Advair, I noticed a difference in Mary Louise's breathing: less wheezing, deeper breaths. It worked. For the first time since her asthma symptoms started, she had relief. All we had to do was wait for a(nother) virus or infection to breeze through and we would see if the effects would hold strong under pressure. We waited a few weeks...and David woke up with a cough...and I furrowed my brow, stared out the windows and looked for the storm clouds...I knew the drizzle would turn into hard rain...

and it did. Unfortunately, it waited until we were at Mommom's house to really let loose - but she was a really good sport about it all.

The big kids got full sinus congestion but no fever. I thought that might be the end of it as it had been days since symptoms started and Everett was happy as ever. Then, he felt warm. Then warmer. His fever blew past the 101's and settled in the upper 102's. He felt crummy and slept awhile, woke, puked, slept, and had HORRIBLE tummy cramping.

It was a rough weekend. But Brent and I did sneak off for a nice dinner and Everett started to recover after an extra night of rest in Houma. Though he's still pretty much only nursing with a few bites of solids here and there, he seems to be feeling much much better - playing, laughing and sleeping - so recovery well underway.

We came back to Lake Charles on Tuesday just in time to see the construction crew finish leveling our house (I know - I mentioned - busy). We start a sort of "phase 2" of repairs and maintenance next week. We've had a bit of a time retaining the services of contractors so I'm hoping the ones that finally did show and have been predictable will follow through with quality...
***********************

Mary Louise and David had eye check ups on their birthday - I know I know - not very nice but it's just how things worked out. They had a special day just the same and the check ups were very quick and non-invasive so it wasn't so bad. Their eyes have remained the same and they have been cleared to go back to yearly check ups for now unless we have any concern about their prescriptions. They have done very well with glasses though we have to have the adjusted VERY frequently and, honestly, the things just slip no matter what we do. Nonetheless, they actually ask me to put them on if we forget (and we do) because they realize the lenses help them to see clearly. Nice.
***********************

We also had a visit with an ENT per the pulmonoligist's request. (Our parting gift was the buffet of viruses discussed at the beginning of this post...) The ENT was very nice and VERY patient. When meeting new doctors, we go as a family. This can be rather precarious when we have to wait over an hour for an appointment. But, Brent and I feel it's important for us both to hear advice, suggestions and feel out personalities, so we take the plunge and the kids together.

Though she wasn't complaining or having obvious symptoms, Mary Louise had very swollen adenoids. Her tonsils were fine - very small in fact. Her ears have never given us issues. But her adenoids were irritated and large. After some discussion, we decided our plan of action would be to try Nasonex for a few months to see if it would alleviate symptoms. Surgery (removal of adenoids) is a possibility long term -but is not on the table right now for a few reasons:

1. we don't know what is irritating her adenoids. Removal would obviously give some immediate relief - but long term, symptoms would likely return because the actual problem wouldn't be addressed (swollen adenoids is the symptom)

2. Mary Louise's immune system is becoming more and more specific. This process will continue over the next few years and by age 7, if there are no more serious injuries (illnesses) to her lung and respiratory system, there is a very good possibility for her to outgrow much of this. (and it is my firm belief that with a ridiculous amount of commitment and diligence, that will, by golly, happen!!)

Therefore, if we find a non-invasive / low risk temporary solution to bridge the time gap for a couple of years, sweet girl can keep all of her parts! win!

The pulmo ran a general immune function blood test on Mary Louise as well. We don't have the results in hand, but I assume they are unremarkable as we haven't had any phone calls...we will discuss this further next month during a recheck. We will also be referred to an allergist here in town for testing there. Mary Louise is a little young, but with her history, an allergy screening would offer a more complete picture of her health and immune system. I am waiting to hear from the local office for our first appointment and we'll go from there.

If you're keeping count, we are minus a cardiologist and adding a pulmo, ENT and allergic to our doctor soup. At least the 3 newbies keep in touch and seem to communicate very well with one another...sigh.
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Everett has sort of put walking on the shelf for a bit. He *can* take up to 10 steps or so when he so feels inclined, but typically chooses to just crawl wherever her wants to travel. He does, however, enjoy doing the Evie shuffle - proudly standing in place while dancing up and down - which provided endless grins and giggles in our house.

He's climbing like mad - up the stairs, down the stairs (mostly - it terrifies me to allow this on our main steps but he has done very very well with just a few steps on porches, etc). He also gets on a off the sofa, beds, pew in our entry way, chairs and anything else he can hoist himself upon. He's amazingly careful with it all and can be trusted to navigate furniture and home very very responsibly (even though he recently learned to flush the toilet - and enjoys doing so while cramming it full of whatever he can reach. I call it House Cleaning by E and would be happy to bring him over should anyone need help clearing a room.)

And finally, Everett is officially TALKING!!!!! He can say: Momma, Dada, pat pat (referring to petting the dogs), outside "tie" or "out-tie", hot - while pointing and waving at coffee or a pot on the stove, cat "tat", bye bye, hi, clap clap "cap cap"and "nuh nuh" which is "nurse nurse". This is a really good thing because, as it turns out, our wee one is following his big brother's footsteps and turning into quite the head banger.

Oh my. This causes me more stress than I care to think about.

The one consolation is that Everett is what I would refer to as a "careful" headbanger: he typically uses a pillow or soft furniture under his head. David would wildly thrash on anything at all and had so many bruises from his fits. So, I'm grateful for the little concessions. Nevertheless, I'll be quite happy when Everett gives up his relatively new little coping skill...

Now, I suppose I'll break down and review a few past posts to see what pics I've neglected to advertise.

xo,
Heather