Waiting for Water

Communication is vital to my life. My marriage depends on being able to communicate despite long physical distances, iffy Internet service, varying time zones, and hastily written emails. My husband and I are constantly trying to improve and become more effective at communicating so that when we can only hear that the other one is talking on Skype, we can glean enough information from playing "fill in the blanks".
When I was pregnant with Anna they cautioned that because of my illness at a certain point we ran the risk of Deafness...I actually sighed a huge sigh of relief that that was "all" because I know ASL...I could communicate, we could bond and get to know each other.
When we were in the hospital they cautioned the same with Nolen because of the antibiotics he was on...and I sighed feeling relief...once again this was the "devil that I know". What they didn't say was that his hands wouldn't work...or that a lot of Encephalitis survivors can't connect spoken words with meanings or figure out how to produce a word with their desired intent. They didn't warn me that he could be trapped and I could spend my days searching his sweet face trying to "see a connection". That I would sign "eat", "more", and "all done" for months and not see any desire to reciprocate (even though the girls were signing already at this age). So I sign, repeat verbally, babble incessantly back at my little man hoping that something starts chipping away at that wall barring our ability to communicate. Oh how I live for our "water" day...



*reference to Helen Keller and Annie Sullivan in the Miracle Worker*


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How many military spouses does it take to change a flat tire?

Remember how I mentioned Murphy's Law of Deployments, If it can break, it will break.... Here is a shining example... My new (as in that is a BRAND new tire) flat tire. Thankfully I had my fellow military spouses there to help out (Thanks Julee, Laura and Tiffany) and Dunkin Donuts to occupy my children.

And it takes 0 Military Spouses, we just call a man in green to come do it for us ;P In all seriousness....I did learn a lot! 

Tips to Change a Tire:

1. Unload all the tools. We glanced over the tire iron (or lugnut turny thing as it was called until we remembered the proper name) and attempted to use a Jeep Tire Iron. No they are not universal....which proves that a man makes them.

 

2. The lugnuts are screwed on tight (and this is the step where a man in green came in very handy)...like super tight...so put your parking break on and JUMP onto the Tire Iron. Viola!

 

3. Put the jack on the shock thingy (go ahead and laugh, but I know EXACTLY what I'm talking about)....and lift it up, take the old one off and put on the new one.

 

4. You can only go about 50 miles on a spare, and about 50 mph at that...which is why I am driving the beat up chevy that is my husband's until I can garuntee Toyota can work on my car.

 

A very special thanks to all the guys who helped and the ladies as well!

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10 "Good" things about Deployment

So Ryan's been gone for a bit, no need to get specific...OPSEC and all, but while I was cleaning up after dinner tonight and thinking to myself that these leftover Chicken Kebobs were going to be AH-MAZING tomorrow for lunch, I realized that they were the perfect "husband" sized portion...and instead of getting sad, I actually thought...there might be a plus side to this quasi-single parenthood. So here comes my somewhat ridiculous, sometimes trivial attempt at "10 Good things about Deployment".

1. Leftovers/Deployment Dinners
           After being used to cooking for a family of 5, and now having the main eater removed from the equation, I find myself bombarded with leftovers. I myself, am not a big fan, but I usually end up "recycling" or recreating the previous meal into something new (taco night is always followed closely by beef stroganoff night). The girls however require "real" lunches and leftovers are just the thing! In addition to leftovers, you have what my friends and I have dubbed "deployment dinners"...things that you would NEVER serve your husband and probably should never admit to eating. For instance, some nights it's just easier to pretend you are back in college and feed everyone cereal, or toss some hot dogs in a pot of boiling water followed closely by mac n cheese and maybe a few carrots and ranch dip just to ease the guilt of feeding your kids crap a little. We also take FULL advantage of deals like "Kids Eat Free at IHOP every Tuesday" or "Free kids meals at Wendy's when you buy an adult meal" nights.  The kids eat, someone else cooks and cleans, everyone is happy.

2. A Get Out of Bed Free card:
        You can literally get out of bed, not put on any make up, or shave your legs, and walk around with out your significant other EVER knowing. Go ahead, throw your hair up in a pony tail...wet, and throw on some "work out" clothes (aka buying really cute gym outfits so that you can run around and have people thinking how "good" you look going to the gym and wondering how great you must look when you actually try when in reality you are totally faking it). It's actually very liberating...and makes dressing up so much more fun when your loved one returns. Not to mention all the money you save by not having to replace razors or makeup.



3. Cover Hog's paradise:
        See all those covers, see all that bed...it is all yours for however long he's gone. You can sleep sideways if you want, take his favorite pillow, not make up the bed, whatever you want because it.is.all.yours.

4.  Complete Controller Control:
        You have complete control over the Television, radio, a/c, heat...whatever you want you can do it. Want to watch a Vampire diaries marathon all day Saturday? Have a sick affection for Zombie films or Ghost Whisperer??? Go ahead and indulge, no one is around to complain (accept for your children...)

5. Books, Books, and more Books
       I LOVE to read, and find that I spend a large portion of my "free time" that is usually our "quality couple time" reading....and it tends to be trashy romance novels. Things that my husband teases me for.

6. Ms. Fix-It
      We all know Murphy's Law of Deployments If it can go wrong, it will go wrong....something WILL break, someone WILL get sick (probably requiring a trip to the ER) and some major purchase or decision WILL have to happen. So get ready to learn a new skill, how to navigate tricare and other such demands having three small children with the stomach flu will do to ya. To date, I have learned how to repair and replace the waterhose connector thing on the fridge, replace the innards of a toilet, eliminate clogs and snake drains, bug bombed a nest of yellow jackets while pregnant, installed shelves, and put air in my tires. These are things I would have NEVER even thought about doing but because of my Darling Husband who would do them for me, but I have become quite adept at googling how-to videos and trying my hand.



7. "Endearing" traits are gone
    Ryan is a pretty amazing and is a nearly perfect husband. And by nearly perfect, I mean he likes to clean his razor and leave the clippings IN THE SINK. It drives me nuts, and has since we were first married. I drive him bonkers because I am handicapped in the area of putting lids properly back on things like the toothpaste, milk jug and various other cartons. These minor annoyances or "endearing traits" of a relationship are absent as soon as the other leaves the house. I don't have to clean the sink and he doesn't complain about my inability to close things. It's a win-win.

8. To Laugh at oneself, Cope with Stress, and Roll with the punches
     I have never in my life been so humbled (other than perhaps by childbirth) as I am when my husband is gone. I learn what sets me off, I learn what stresses me out, and I learn how to handle those stresses (bubble bath, candles, chocolate, and good book, please. Wine is optional.). I have had to learn to laugh at myself when I am so stressed and can't find my phone only to open up the fridge to grab a juice box and see it sitting on the shelf next to the butter. I learn to roll with the punches and be grateful for what I have. Three days in a row last week the kids and I had 5 am wake ups for doctors appointments, therapy appointments, meetings and what not. We got up, we got dressed, and we went with it because it was the only option. Learning to roll with the punches and find laughter in a situation can be the key to surviving.

9. Relationship/Communication
         I learn to appreciate my spouse, to appreciate the little things he does (like take out the trash) that I now have to do. I remember to say thank you to him when he gets home and takes the trash out. As rough as deployments are on a relationship, I have found that ours continues to improve because of them. We learn to "read" the signs of stress through a broken up skype image, we support each other across the miles with an emailed joke/comic, videos of the kids, or flowers because he knows I had a rough day which lead to me crying behind the kitchen counter while the kids played in the other room. Our communication skills are honed and sharpened by the distance and demands of deployment.



10. Homecoming
       I get to look forward to a day, a time, when I get greeted by my husband because he has missed me for an extended period of time. We get to think about that day, dream about that day, and plan that day. And then we get to live it out. We get that first kiss fireworks explosion over and over again. I get to go shopping, primp, shave my legs, and dress up so that I look my best for the man of my dreams. We have memories to share, stories to tell, and we get to stay up looking at each other making sure that the dream is now real. I get to cook "real food" and have it appreciated. I get to share the covers, TV, and movie picking decisions. I get to cuddle with my husband, reach my foot out at night and touch his leg just to make sure he is still there. And those endearing traits, they reappear and for awhile you are so glad to see those razor clippings in the sink...they actually make you smile.



Don't get me wrong---Deployments/Trips/TDYs/Seperation from the man you love sucks, but there is always a silver lining.

No such thing

I'm starting to think that their is no such thing as a good doctors appointment. Kaelyn and Nolen both had "well baby" check ups a few weeks back and I go thinking..."Finally, a normal, routine doctors appointment." Boy was that thought shattered fast. Kaelyn has had what we thought was a benign Stills Heart murmur that was "fading", meaning that up until the other day we were confident that she would grow out of it. Apparently it's back, it's loud and it warrants a very thorough eval with a pediatric cardiologist.
Nolen's was equally bad and very much like watching a precious diamond ring (in this case my dream of a normal drs Appt) spiral in slow motion down the sink drain...you want to scream, you frantically try and stop the spiral only to watch your wasted efforts go tumbling down the drain. Nolen's head has been growing at an alarming rate, and before the Neuro team would let us leave the office they stressed that he MUST be seen and frequently by our pediatrician to keep an eye on the potentially threatening situation. I didn't mention this to the Ped and the first words out of her mouth were, "Nolens head growth is alarming..." Basically, we are waiting to see how his head growth will be in the next month or so before we do further testing. Meaning pray and hope it slows down so that we can avoid an MRI and/or CT scan. A lot of different things can cause this, one of which being poor cerebal spinal fluid circulation which would then lead to surgery where he would have a shunt installed that ran from his brain to abdomen to help the flow of fluids. Other causes are tumor/poor bone structure/and other ugliness.

In addition to this new concern, Nolens weight is yet again "not so good"...so I've been stuffing his face...and need suggestions for high calorie/high protein baby friendly foods (already doing sweet potatoes and avocados). Suggestions?


So there it is in a nutshell...my lovely brood of children can not have a normal, routine doctors appointment. It's just not possible!


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2 Birds, 1 Stone

When you are routinely outnumbered by many small children you find joy in things that kill "2 birds with 1 stone". Point in case, my shark broom/light vacuum can hit my wood floors, kitchen tiles AND the throw rugs! Newest thing my Shark can do...

PT for Nolen!!! He LOVES chasing me when I sweep (with a real broom he goes after the crumbs) and the Shark.

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Why my blog posts are lacking

Monday- Developmental Instruction-Early Intervention 12-1pm
                Physical Therapy, Private with about 25 min drive  2-3pm
                *absurd amount of traffic means we typically eat crockpot meals for dinner!*
Tuesday- Occupational Therapy-Early Intervention 1130-1230
Thursday-Physical Therapy-Early Intervention 1230-130
Friday- Kaelyn's Dance class 5-6
Saturday-Anna's Dance class 9am-930
Sunday-Church

Sprinkle with doctors Appointments, trips to the Hospital, and one pending weekly therapy. As needed add visits to the grocery store and other such errands. Apply coffee generously and let Rest for at least 5 hours. After it has risen, knead back down and start the cycle again.

How far we have come!

*sorry for my man voice in the video, had a hideous cold! Also, the picture of Nolen with the girls is the most recent of my big man!*
I have been promising this post for quite some time....here it goes! Check out how much progress we have made! (More like He has made)

From IVs, EEGs, Oxygen, Warmer beds, and NG tube

From postioning rolls, head turns, and mobiles

From meal time weight checks, calculations and conversions

From not being able to lift our head, open our hands, clear our nose from the floor, laugh or smile

to...

Sitting and playing with our sisters

Laughing, smiling, eating and babbling babas and mamas

To scooting, rolling and moving.

We are far from perfect, months from normal, and absolutely blessed to be where we are! The progress he has made in the past 7 months leaves me breathless, he has done more than I dared hope for!

Just a tad bit frustrated

I have been using the Blogpress app to write and post, and I have written about 3 post, hit publish and then POOF they are gone :(

So here is the recap

-I started couponing, and am addicted.

-We are home and are trying to get back into the swing of things. My family decided to give us an extra special parting gift of the stomach virus...thankfully we are all recovered and no one landed a trip to the hospital (it was a bad strand and two of my friends kiddos ended up in the hospital because of it).

-We hit the ground running with 2 therapy sessions on Monday, Neurology (and car maintenance) appointments today, a new Mom meal tomorrow and then a quick trip to a friends cabin for the weekend (after Thursdays therapy of course).

-nolen started scooting at my Moms. It's not much, it's not pretty, but it's forward movement and I'll take it!

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Can you say burnout?

I was really feeling the pressure with all the new therapies, doctors appointments, and other concerns...so I packed the kids up and ran away to...my mamas!

My stash for the ride...:-)


I get to enjoy sunsets with my Anna on my parents new balcony (in their GORGEOUS home that can hold the entire family, first time we have ever fit in a house)...

My four siblings have come in town and I got to spend the day having fun with the kids...something I don't get to do very often...because we are always going, always doing therapy, or schoolwork, or work, or a thousand other things.


We went for a walk-- and yes there are extra toes...those are my darling nieces (5, and one is missing)!


We explored some empty bird nests, old cows bones, look for a mermaid in the pond, and played a very long and somewhat hysterical game of Sorry.



Tomorrow my one missing niece will be here...I can't wait!

I love our "family"

A fellow military wife was lamenting the woes of "Grandparents" day at her children's schools and how it really just salts the wound of not having your "real" family close enough for these type of things.

And then tonight I hosted a good, ole fashioned slumber party and realized that these little girls (and their moms)...

Are part of our New Jersey/Military Family.

And I love these little ladies (and their Moms!).

Kaelyn and her friends are enjoying a night of fun. Heart shaped pizzas, movies, popcorn, cookies...laughs and memories! While my dear sweet Anna spends the night with her Best Friend Hunter...


(Ryan is not a fan of his mothers sense of humor...she added a candle to make the dinner for 2 much more romantic)


I don't think I say it enough, but I love my kids and I love our makeshift family!

I love that I can ask these ladies for anything, that they can come pick my kids up at 4 am from the ER, they think to send my husband a copy of our daughters first soccer game when he is deployed, that I have sat and cheered on their daughters at soccer games and dance recitals and felt the same swell of pride I feel for my children. That they will help me find the humor in anything and when its not there, pass a glass of wine and drink a toast to shared worries and the woes of Grandparents day.

These ladies not only get "it", they get me.

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The "Stack"

Here is just a fraction of Nolens medical records that I have to provide for our Disability application! I had to input a comprehensive summary of his records for each doctor, therapist, specialist etc for most visits! Talk about making you want to give up before you even start.

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Must be a 4 year old thing

Kaelyn has gotten really good about delivering some funny punchlines unintentionally. Recently, Ryan forgot his cover/hat and we drove on base to drop it off. Kaelyn inquired as to how I knew which car was his because "a lot of cars look similar to Dads". So I explained about how I know the color, the make, and the license plate number along with my old parking sticker from College.
Kaelyn quickly states, "For yours we would just find a car that looks similar and then look inside to see if it was messy. If it's messy than we would know it's yours!"


Just so you all know, my car is pretty clean right now...so I don't know what she is talking about!

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Long time no post

Once again, I must apologize to you all for neglecting the blog. Life has really gotten hectic!! Ryan is currently in training so we have been soaking up the Daddy time while we can, knowing that as soon as training is done life will get even more hectic!!!

Nolen has passed the 6 months since illness mark, and we have accepted that a full recovery is not to be expected buy we still hope for it. I will post more on him later, but his health and GI issues have improved. His blood levels aren't normal, but don't indicate Leukemia/Liver/Kidney failure as of yet. And he is making some great strides in therapy. Which brings me to why life has been so crazy.

--We have our application in for Disability, our Social Worker Stan thinks we have too much money in savings and unless we can get them to look at Nolen separate from us we probably won't qualify. The application process is absurd! It took about a week of nothing but working to post his medical history! I'll send you guys the picture of "The Stack" so you can fully appreciate the amount of work that goes into just the beginnings of the application process!!

--Nolen has been evaluated for Occupational therapy (adding it once a week), Developmental teaching (to help with his cognitive, social, emotional and language delays). He qualified for both and we will be adding these two therapies to our existing two for a total of 4 therapy sessions/week (maybe five because our CHOPS therapist wants to add OT as well).
We are waiting on referrals for a hearing test and developmental pediatrician as well.

--Nolen has these precious braces to wear

-My Darling husband and my best friend from Oklahoma arranged for a quick getaway to NY. It was amazing and much needed...as I was and am probably quickly approaching therapy burnout. Tips anyone??

Here are some snapshots from our trip
--Prom-- the Awesome 80s Prom, an interactive improv show where Em and I partied like it was 1989.



Breakfast club anyone??



Then we went on to Ellis island and liberty Island...where we did not act our age an ended up with some awesome pictures.



I co-hosted a Kraft First Tasters party! Lots of great food and free stuff!!


And...I was contacted by word of mouth for my first sewing job! A passion made a modest profit.

Custom Colts Baby Bedding
-Bumpers-



Pillow


Crib Skirt


And Blanket



I also painted this for my girls...







We have been making some serious progress on the homeschooling front, which has also cut into my blogging time.

Along with my job...my sister in law is due in July and keeps handing over some items to me to handle while she peeps for baby and I get my feet wet as her replacement come the arrival of her little girl in July!

Thanks for hanging in there and for checking up on me! I miss you guys too!


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Kaelyn's Dreams

My girls (and possibly Nolen, but I won't know until he is much older) have always seemed to have dreams. Both good and bad. So part of our morning routine is to talk about what we dreamt about the night prior. Yesterday morning, Kaelyn shared this gem of a dream  with me...

 "I had the craziest dream last night mom"
"Really, what did you dream about darling" expecting to hear about the latest princess dream in a LONG line of princess dreams
"I dreamed that Dad, Me and Anna went swimming. And *insert gigle* Dad was wearing a little *hold her hands really close together* girls swim suit. Isn't that silly!"
"That is really silly!"

So, I made her repeat the dream and video taped it so that Ryan could see it when he got home. He didn't find as much humor in the situation as I did! I spent the whole day imagining my husband in something like this...

And it made my heart happy. Do your kids dream?

My homeschooling Secret Weapon

Audio books are my secret homeschooling weapon! The girls LOVE them, they buy me about 15 mins while also counting as "educational". Matter of fact, this post WOULD NOT be happening if it wasn't for an audio book rented from the library!

I like to say it works on Anna, my 2 year olds, listening skills....she is now very good at knowing when to turn the page, while Kaelyn has excellent listening skills, it teaches her how to use inflection with her book as well as reading comprehension. I've picked up a few really cheap audio books from the Dollar Tree (Jonah and the Whale, Jack and the Beanstalk, Noah's Ark and Cinderella). While the biblical ones have songs following the story, the classics have questions. Kaelyn has started answering the questions outloud.

In addition to audio books, my lovely Mama Dot (aka my Grandma) bought the girls a subscription to Highlights and it has an audio book option on it's website! LOVE IT! The girls will sit and flip through their stack of three highlights while I cook dinner.

I know my posts have been scarce these past few weeks, and there is a LOT going on in my life (I'd really enjoy a slow down) and to better serve my family, my job, my volunteer position, I've had to let things slide. Once I get the handle I'll be back in full force, but for now I am going to squeeze in a shower while Snow White finishes on audio!

What are your homeschool secret weapons/tricks? I would love to diversify!

More Preschool corner visit here!

Denial-What is it good for?

I struggle sometimes to balance my want to live in denial with my NEED  to keep a positive but realistic outlook. I want to ignore  to vehementantly deny the possibility that my son might have delays and special needs for the rest of his life. But, I can tell you one thing that I have learned in the past 6 months...having a special needs child radically changes YOUR life....even if his "specialness" is just possibly temporary.  These radical changes permeate more than the big picture aspect of your life. Even the mundane day-to-day living has become completely different.

Almost everything I do with Nolen is calculated, from how I try and pick him up by coaching him from laying on his back onto his side, then to sitting as opposed to just grabbing under the arms and going  to how I carry him differently then I carried my girls, trying to keep the pressure on his hips and not under his butt (so that he is encouraged to lengthen his body and not curl up). I try to make every moment and every interaction with him an attempt to instruct him, strengthen him, and encourage him.

 I push my son. I push him more than my girls were ever pushed, I stand for hours in the toy aisle analyzing which toys encourage suplination in his forearms. (Any suggestions?)  I sing ridiculously loud lullabyes over the sound of the EEG monitor being glued to his scalp and his screams. I spend hours at therapy making crazy sounds and faces and popping his binky in trying to keep him from screaming the entire session. (Again, any suggestions?) And in those session in which he just isn't having it and I would have whisked my girls up in my arm and walked away, I fight the urge and push him through it. Why? Because he needs to be pushed and my emotional need to protect him has to be ignored by HIS needs for therapy.

  I live, breathe, eat and sleep his difficulties daily. I watch his progression and jump for joy when a new skill is mastered, but I am constantly aware of the other milestones he should have reached but hasn't.  This is why I am so quick to recognize denial in those around me...I know and see his issues on the most intimate levels, I hold him when he has bad nights full of residual pain, I worry when he sleeps for a full day and doesn't show interest in eating, I watch and hear his frustration when his hands don't perform as he needs them too. I simultaneously beam with pride and cringe with realization when he adapts to using his wrists to move things because he can't open his hands. I spend hours on the phone with my sister adjusting his lab levels and demanding further test because 6 months later his liver and other levels SHOULD be normal, but aren't. (Any suggestions on how long post Encephalitis abnormal labs are  considered acceptable?)

I get that every parent or loved one of a child requiring different needs wants to ignore them, wants to gloss over them, wants to give their child more time, begs that it's just a time thing and not a real issue to be faced head on. But what good does glossing over do for a child who *might* have real issues? None. Just like becoming overly emotional when my son was in the hospital didn't help him it only exhausted me.


Because I am his mom, I don't struggle with denial because I am faced with this one hard truth---Denial has no value other than to make me feel good.

     Denial does not make a problem go away. In fact denying that your child has a problem only makes it a  bigger problem because you neglect to push them and seek out assistance and therapies that can make a HUGE difference when you start early.

   Denial is not the same thing as being optimistic. Optimism is choosing to hope for the favorable outcome. I hope, pray and believe that Nolen will be well, but I am very realistic about where we are, and less than comfortable with the fact that he might not be "normal". Ryan said it best, "Nolen just wants to be loved, and regardless of what happens, I am more than happy to love him"


So,  help me out here (since I did just let you read my diary)...how do you balance Denial with Reality? Worry with Optimism? Do you think you can be Optimistically realistic? Am I in denial about being a Pessimist?

That little snot!

The girls have our old iPhones because I have become *that* parent...the one I swore I would never be! I figure all you "No video games for my kids parents" can talk to me after multiple doctors and physical therapy appointments in one day...and then judge my decison. But be forewarned...this is one of my best parenting concessions to date.

This morning...Kaelyn, in all her sweetness, walked up to me holding her phone, "Mom check this out" and holds up the phone to show me the pictures she took.

I feigned interest, expecting yet another montage of random blurry shots. She could tell and decided to narrate with a very proud grin.
 "These are the towels on the floor," she succeded in getting my full attention as I saw the blurry shape of white which could only be the pile of towels waiting to be washed,"and this is a picture of my blanket on the floor, and these are the toys on the floor, and this is a picture of the dishes in the sink. This house is a mess! See all these things"

*she keeps flipping photo after photo*

As I mentally thanked her for the digital "to-do" list, I looked up and said "Well, now you know what needs to be done".

Preschool review: Hearts and more Basics!

So this week has been pretty awesome as far as homeschooling goes.
Kaelyn continues to  progress with Reading and she enjoys her new reading corner (I'll put up pictures later), Anna has started signing her alphabet although she really doesn't like to actively do anything yet.

Kaelyn worked on cutting...so she made this cool fence.

Then we sorted colors, counted and graphed the results. We "predicted" which color would have the most hearts, which would have the least and the "evaluated" the results.


We made "heart snowflakes"!!! And decorated them.

And we also talked about recycling. We turned toilet paper rolls into heart garland and took the broken crayons and made them into heart shaped multi colored crayons for our friends.

The girls painted them, and I cut and poked holes. Then the girls threaded the ribbon through!

Visit Preschool Corner for more!

Preschool Corner- Getting back to basics

I know, long time no see! I now have a computer and although I don't really have any pictures of the kids in action, I do have some shots of their work!

In order to actually get homsechooling done, I've had to eliminate some of the fun themed aspects because they take time, planning and often require us to be at home. The basics, and adapted fun activities have become our staple since we spend a lot of time in the car and at doctors appointments.

KAELYN: 

MATH: We are counting past 20 without mistakes, and if she could remember the tens changes past 40 she would be well on her way to counting over 100. We are doing great at manipulating items to solve word problems for both addition and subtraction using "key words" like gave, added, earned, etc to determine what type of problem she is doing and to manipulate her manipulative's to find the answer.

WRITING: I have had her practice her penmanship and spelling by using Progressive Phonics handwriting pages. She has started coloring her drawings and illustrating scenes from books...and her artwork is impressive!

Both the flash card and hearts are from the dollar spot at Target. We use those hearts as manipulative for Kaelyn and for Fine Motor Skills work for Anna. Anna uses a spoon and moves them from one container to the other. She seems to really enjoy this!

READING: We are READING PEOPLE! It's so exciting. She is using phonics and sight words to sound out and read!!!! Below are some of the books that she is picking up and bringing to read to me regularly. What I love, is if she can't figure out a word, she spells it out, tries to sound it out and THEN brings it to me for help! Her confidence is there, and she is tackling reading with excitement and pride.

See the colored picture in the middle??? Kaelyn colored it!

SCIENCE: We are reading aloud Magic School Bus Whales chapter book as a family at nap and at bedtime. The girls are really enjoying it and we are discussing the difference between Baleen Whales and Toothed Whales. Due to the snow, we have been reviewing states of matter (what does snow become when it melts, etc) and talking about the seasons and why some trees still have "leaves" and others do not.

ANNA!!! 3 in August
I just started really working with Anna on learning some of the basics that she refuses to learn "naturally". It was around this time that I started actively working on Kaelyn's attention span and teaching her to sit and learn for longer periods of time. Anna struggles with colors so we have been doing a lot of sorting, coloring and labeling in our everyday environments. Shapes are coming along easily, and we have a fun game that we play. In addition to I spy (numbers for Kaelyn Colors for Anna), I give Anna a hand drawn list of shapes and ask her to "call out a shape" to Kaelyn. She points and says the name of a shape and Kaelyn is suppose to try and find it. Obviously I might have to help find the less common shapes (heart shaped lettuce anyone?). Anna has taken to signing her alphabet with me which makes me very happy!

NOLEN:
We have been working on rolling over and Nolen is a rollin'! We are also working on opening and closing his hands by using puffs to encourage him to open, grasp, release. He can't get the puffs in his hand but it does encourage him to move his hands  with purpose towards a small item, which is difficult. Anna loves "helping aka eating" Nolen's snacks during this exercise, but at least she is sharing!

Here are some great weekly recaps at Preschool Corner!

We are seizure free!!!

We were released today with a "Seizure free" ruling!!! I'm soo excited and relieved. Now we can focus on his GI issues, liver issues and other minor lab abnormalities. We made it home before the snow/ice/rain mix fully hit the area. Learned a cool new meteorological term, compliments of where the Air Force has stationed us...apparently we are having Thundersnows...sounds made up huh?

Not nearly as cool as the Dustnados we had in Oklahoma!



BTW...I wrote this using the free app of Blogbooster. :)

Prayers Please

So, I know this is going to sound crazy, but I'd love for everyone to pray that if Nolen is going to have any more episodes, that he has them today while he is hooked to the monitor. I would love to know 100% either way if these episodes are seizures or not. The easiest way to know is for him to have them while hooked up and the machines to clearly say "This is not a seizure".

I hate the idea of seeing him have them, but if I have to see them, I'd like to see them while he is being tested. I'd also like to only have him there for 24 hours and if he doesn't have one in a 24 hour time frame we will stay for longer.

**This was meant to come out on the 25 of Jan. Not today. In my rush to get out I didn't press the right button. Sorry :)**

A One Computer Family, A little white lie, and a trip to the hospital

So, unfortunately we are down to one laptop. This probably wouldn't be a problem from most families, but Ryan is completing his Masters, trying to catch up on work AND doing taxes while for some reason unbeknownst to me, my boss is selling houses like the economy is good and I am trying to send out contracts, comps and post new listings. In addition to all of this, I am working on a second blog for my volunteer spot with Ryan's squadron. Needless to say, computer time is virtually non-exisitant and this blog has long been forgotten. What I need....is an app for my phone where I can blog....any suggestions????

Now on to my little white lie and the hospital stay.
 Nolen was having frequent seizure like movement and it was really freaking me out in early December late November. As his other issues and general health improved these seizures seemed to slow down (meaning I noticed them less...but it could also have been tied to the fact that I started moving him back into his crib). I lied. Yep, I HATE lieing and it bothers me soo much that I'm actually admitting it here. I never to his doctors about this little glimmer of hope where his "episodes" slowed down. Nope. Sure didn't. Because like his diahrrea and other health issues that absolved for three weeks and have now returned in full force, I suspect that the "episodes" will pick up as well. So, the Neuro team finally have decided to test and see if these episodes are in fact seizures or just infantile movements. This means that I am leaving with Nolen for a 24 hour video EEG tomorrow! And believe me, taking an infant overnight into the hospital requires a lot of baggage!

I'm bummed that I haven't been able to update you guys on what all is occuring here at our home.
Kaelyn has started reading. I'm so excited for her because right now her reading issues aren't actual issues, it's more a lack of confidence. She's grasping the concept, putting phonics into use and sounding out words, now to get her to realize that she CAN do it! She's also counting past 30 without help...well on her way to 100 if she can just remember the teens changes. Adding and subtracting are becoming more automatic for her, although her number recognition beyond 10 is needing some serious attention.

Anna is doing well, refusing to learn her colors, but knows most of her shapes. She's starting to count beyond 7 on her own. Her abilities to dress herself, care for herself, and express herself never cease to amaze me! I have to remind myself that she isn't much over 2 frequently.

I have a lot of fun crafts planned for Valentine's and for the Chinese New Year! I only hope that we will have our second computer back in time for me to share:)

Now, I have to go get everyone ready for a return trip to Labs for more blood tests for Nolen (his Liver and Calcium levels are messed up a bit), therapy and then more packing for tomorrow's trip to CHOPS!

Welcome home!!

We welcomed Ryan home today! So exciting!

This has been a huge relief. We have had a very busy week of various doctors appointments.

Feeding Team-
Want us to continue fortifying his food in hopes of encouraging more weight gain.

GI-
Nolen had a Barium Suck Swallow test and it was perfectly normal! YAY. That means that his choking is probably due to fatigue, poor tone and reflux. We will know more after he spends two weeks on his new medication (which according to Ryan tastes AWFUL! We will definitely do our best to make sure to ask for it to be flavored next time considering the LARGE amount he takes each day.). Nolen is still having blood in his stool, so we will be waiting to wean (ughhh) for at least another 4 weeks. I don't want to introduce formula to him (or spend days very uncomfortable to having to stop weaning quickly) until the blood has stopped. During the next 4 weeks, I will have to eliminate soy and dairy.

Neurology-
Concerned about his seizure like movement so we will be going to CHOP for an overnight EEG, possibly over two night frames. We will be waiting to do an additional MRI until he is older unless his development stalls or deteriorates. Encephalitis can become degenerative, and brain damage can be extensive and we won't know until his brain is fully mylienated. Neurology was very hopeful given his development that things looked positive regarding his brain damage. IF he is having seizures we will end up undergoing further test to find out where they are located and how best to treat them (drugs/surgery).

Now, I'm back to snuggling with my husband and I will do my best to try and post our AWESOME developments in our homeschool as well as some yummy recipes!