"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

Smelling the Roses

Mary Louise and I have been spending wonderful amounts of time together...at various doctors' offices. She loves her "Mommy - Meesey time" and I make every effort to stay very present while waiting with her. We read, color, talk, snack and giggle. We snuggle, laugh, listen and learn. Love and laughter in (almost) every minute. It should be everyone's goal.

I've been stressed lately. Very stressed. I've felt overwhelmed and needed breaks. With the number of doctor appointment mounding, home tasks getting away from me, and the school year (David's therapy) and ballet lessons starting, cracks are showing and cackles are starting...and then there's my bright idea about a booth at the markets here...way to pile it on, self!

Mary Louise and I went to the pediatrician yesterday to chat about allergy test results. The doctor was running late, so I requested we be put in a room (there are some nasty bugs going around our area - and measles has made its way to Houston - a short 3 hours from us. I am not very keen on sitting for an hour in the waiting room.) We waited 45 minutes in the room. When the doctor made it in, the table was a Mary Louise graffiti original and we were reading books after doing a math lesson on the IPad.

The doctor listened while I explained that I was very wary of doing weekly (or twice weekly) injections as it would entail me waiting with 3 little ones in a pedi waiting room twice a week, however long it took to get us in and out. So, I asked, would the risk to our family (being exposed to every illness entering our area), outweigh the benefit of the shot? or vice verse? Would the injections work for her? why?

I had a list of changes we had already started implementing for Mary Louise at home: HEPA filters in the bedroom and downstairs playroom (her 2 areas of most indoor play) as well as upgrading the central air filters. Increasing her elderberry and honey dosing, and introducing a nettles based allergy vitamin, washing our pups twice weekly, protectors on the mattresses and new pillows with protectors on them while also being aware of seasonal patterns and pollen blooms. I've also contacted an herbalist / acupuncturist friend of Brent's who has agreed to help us streamline our efforts and diet to best suit Mary Louise's needs.

For those who have written, the pets have never been allowed upstairs anyhow - except for Lizzie who sleeps in our (master) bed room as of about a month ago when her aging nerves prevented her from settling down to rest...ever. She climbs the stairs with me at night, sleeps in the corner (down the hall from the kids) and goes right back down in the morning. The cat is outside all day everyday and many nights. When he does decide to sleep inside, he's in the laundry room (we don't leave clothing in there). Anyhow, we are not re-homing our pets...haha...an ad would look a bit like this:

11 and 13 year old dogs and a 12 year old cat to be re-homed due to newly diagnosed allergies. All animals have sort of pleasant dispositions as long as they are allowed to sleep undisturbed for the greater portion of the day. The kids love them, and they tolerate the kids (or run from them). They are house broken - but, when angry, the little one (Chester) is sort of an asshole and tends to pee on your foot. All have lovely stink breaths and need water added to their foods so they can chew. Up to date on shots, and will forward their vet files...but it may cause a paper shortage. Oh. And if the grass is wet, don't expect either dog to set foot there for relief. They think the driveway, or sidewalk works just fine. Let me know if interested!! (*grin*)

The pedi's response was very positive and extremely supportive. She said that Mary Louise's allergies, while significant, are not absolutely horrible so unless I had come in pushing for injections, in our situation, the risk of bringing her into the office so often outweighed the benefit of the injections so she would not have gone ahead with them (at this time).

Outside the office, there were masses of blooming rose bushes. "Please can we stop and 'mell dem Momma?"

"Yes baby. Of course."

We went to the ENT the next day. He looked over the results and asked how her symptoms were at home. I told him about the herbal measures and holistic approach. He admitted to not knowing much about it and said it was, of course, my choice if I wanted to explore that route - it wouldn't hurt as far as what I had planned or was already implementing. After an exam, he stated Mary Louise's adenoids were remarkably smaller as compared to our first visit. At this time, he wouldn't make any changes - and supported our plan not to go ahead with the allergy shots.

We also discussed alternatives to the allergy shots should her symptoms worsen over the next year or so. We could do sublingual (under the tongue) drops at home instead of the injections. He has the facility and staff to mix her drops in office and said she would be a candidate for the home therapy should her condition worsen. If it came to that though, she would likely need an adenectomy (adenoid removal). We go back to him for a recheck in 6 months.

Long overdue updates to come - we've just returned from a trip to St. Augustine, Fl.!

xo,
Heather

Week in Review

Just to recap the week:

Brent and I did our first triathlon relay together. It was fun.
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We met our hematologist and found out Everett probably doesn't have some completely random and bizarre genetic disorder. We were happy. He does, however, have a pretty severe iron deficiency and will be on daily medications as well as a high iron diet until Christmas. So, there's that.
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Everett is cutting a top molar. He's taking it well all things considered - just clingy and nursing as much as possible. Odd thing is: he seems to be getting all of his teeth on the right side of his mouth first.
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I committed to having a booth at one of the local farmers' markets. My first day is tomorrow. I'll sell homemade granola, molasses cookies and organic elderberry syrup made with local honey under the name "Downtown Naturals". I'm excited...and nervous. But, mostly excited. Even if the whole thing is a flop, at least I'm trying it out and fulfilling my exotic dream of participating as a vendor at a farmers' market. (I know - I should simmer down - dreamin' big here!)
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AAAAAnd Mary Louise had allergy testing today. She looked like this in the waiting room:

She was so very excited to have a little "Mommy-Meesey time" believe it or not! (sweet baby girl - love her)

As it turns out, she's allergic to just about everything - including dogs, cats, horses and cows as well as grass, pollen, weeds, a few molds and a number of trees. Superb. Please excuse me while I sit in the corner and have a small pity party.

Here's how it went:
Me: wow Mary Louise! you're doing so well! (as the nurse is applying the allergens - ML didn't move at all)
RN: I know! she's being so patient and calm!
Me: What's that giant growing red dot? Is that something she's allergic to?
RN: uh - yeah. That's dog saliva.
Me: (jaw drop) (the sound of the selfish portion of my heart breaking into a thousand pieces. Never in my life have I been without a dog.) But I have 11 and 13 year old dogs?
RN: There are things you can do to lessen their impact on her health...I don't ever tell people they HAVE to get rid of their pets...but she is clearly allergic...the shots will help...(her back looked like this - I was taking pics so Brent could see - not great quality, but the idea is there):


a couple of minutes goes by. Nurse is still in the room discussing a few early allergy reactions.

RN: We're going to have to stop now.
Me: That was fast...I thought she had to sit for at least 20 minutes?
RN: well, she's reacted to almost everything. Some of the areas are about to grow outside the lines I drew. So we can stop here. 8 minutes.

Mary Louise: Mommy? I thought you were going to paint my nails?

and that's pretty much what happened. I'll go on Monday morning to discuss a plan of action with the pediatrician. Mary Louise and I go to her ENT on Tuesday to recheck her adenoids.

Momma = tired.

xo,
Heather

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?
yes.
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?
(scribbling)
Yes, I writing it all down.
Thanks. Bye.

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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.

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ML: Hey Dad!! Dis a MMM mmm *emmmm* for May-wuh-weeze! (pointing to a random M on a magazine)
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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.)
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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.)
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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!!
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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)!
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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.
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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!

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...
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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.
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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