Update on Luna~

[nomoretears00]

From Luna on FB~

Luna Ella Aldora

♥ to u all - quick update - body def geting stronger - ive begun using walker w assitancne trying to get my legs strong again - have bout 40 words under my belt and can manage smal sentences..even told wee pixie i love her - she said 'mommy im so proud of you - you tlaked!' itw as amoment for sure...fine motor/dexterit still needs work - i wrote two poems (firs writing in 9 mon) in recreation therpy on ipad- then they turnd into poster for me - will post it - -

looks like have to wait til outa here to continue the search for hte cause of all of this - but as my resident dr said - i need to get stronger either way - so taking tat approach - seizures and episods leaving me more confuse and forgetful than ever and i amvery concerne about my vision and tryng not to be scared - the good eye see shadows and shapes and barely detail, bad eye when able to open very bright distorted - eyes open together double visionall the way its a awful so i keep sleep mask over that eye and wear sunglasse 24/7 - no tv watching or chattin -

been learnin use ipad here becuase got the keyboard memorized - thankgoodness have some way comunicate.. ill know mondy if ins will aprove another week - finger croseed - otherwise prob have to g o back ot skilled nursin place for more rehab - ugh that would suck - so glad brought my music and musicals to listen to

 

[PennLady]

Thanks, nomore. :-/ Poor Luna. Sending all the positive vibes I can.

 

[estragon]

I am praying for her every day. Luna, much love and prayers.

 

[nomoretears00]

From Luna today:

was told i walked w walker 50ft and back, up and down steps, up and down ramp today and had seizure after and remember NOTHING of it - aprntly i asked someone to video it so there is proof, but damn i wish iremember..thats huge feat...just damn!

 

[LettersFromTatyana]

From Luna today:

was told i walked w walker 50ft and back, up and down steps, up and down ramp today and had seizure after and remember NOTHING of it - aprntly i asked someone to video it so there is proof, but damn i wish iremember..thats huge feat...just damn!

This epitomizes the roller coaster that is her recovery.

She and the pixie are in our thoughts.

 

[TE999]

From Luna today:

was told i walked w walker 50ft and back, up and down steps, up and down ramp today and had seizure after and remember NOTHING of it - aprntly i asked someone to video it so there is proof, but damn i wish iremember..thats huge feat...just damn!

Poor Luna. This lovely woman is a bottomless well of courage and determination. The Gods bless you sweet lady and hasten your recovery. Healing vibes and good thoughts on their way to you.

 

[estragon]

Have heard Luna was listening to the Olympic games yesterday. Delighted she is able to. Thoughts and prayers and love to a lovely lady.

 

[PennLady]

Recent updates from Luna:

my new roomie is watching olympics and i can hear Loreena McKennitt song in the background of the gymyst routine - that rocks!

no news today - my family is coming out tomorrow for "family training" - at which time should have answer from ins. - everyne here figting for me to stay extra week to be able to go straight home - and not anothr skilled nursing facilitly stay - making great strides here - working my ass off - literlly - it feels like my ass is falling offf - along with tother parts of me

 

[SydneyBlake]

Sending prayers Luna's way....

 

[nomoretears00]

Good news!

YES - got my xtra week at rehab - which is unherd of!!!!

(then she said in a comment

Luna Ella Aldora chopppy conversation but it sthere - that takes more energy out of me than the physicl stuff - but everyne patient - and happy - means i bypass skilled nursing facility and go straight home tues wiht home therpaies and then later outpatient....got disabilit yin works to help with expenses too - and appt with D.O. few weeks who will leave no stone untunrned to solve the mystry of me - GOOD DAY!

~this was about 6 hours ago.

 

[PennLady]

yay!

This was posted about an hour ago (which would make it about 4pm EDT) by Luna:

as of this moment - starting two days ago - i SPEAK! im progressing super fast in all my therapis - poor peopl dont know what hit them when luna the chatterbox opened her mouth and hasnt stopped since - still hard time reading and while i can trace and copy i cannot write - working on making reading smooth enough for pixie to know im mommy and not a mommy robot - in OT i made mac n cheese on the stove with the aid of my walker - whew quite a task! in PT my strengtha nd endurance is coming bakc and they have added a cane for balance purposes while im there - even sidestepping with just a hand guiding me - in speech im speaking as fluent as ever (now its all the visual stuff) - weve been playing word association and catogry games to help and ive been staying up til wee hrs playing board games and word assocation and such with other patients - all of us needing the extra cognitiv training - i have been kicing butts left and right had a neuro-opth eye appt which took me away for 3 hrs and was pointless - but in contact with an ophthalm friend of a family member who has asked important questions about the double-vision and eye pain and will be seeing me next friday - his first thought was lyme (esp after learning that if i look straight its double but if i keep head still and shift my gaze to the left its singular and i cannot shift my eyes to the right at all....my eyes just wont go that way) - next thoguht diabetes and then MS - hes flippin fuming to hear i havent gotten a full neuro workup and i think will be huge advoctate for me - so ill see him when i go home but i HAVE to keep bothe eyes open for this field vision test he is going to do - hard so hard to do esp when spasm...starting neurontin tonight (finally somethin for nerve pain) which might even help the seizures, not sure about the agonizing eye pain...but i got a smart-ass boy on the spinal cord unit - similar situation with suddeness, drs not beliving or testing, and entire body being affect - hes taken the task on of helping me practice - i hope he considers going into at least recrreation therapy when hes better- esp knowing the hosp will pay for school - great motiviator and inspriation for an 18 yr old and kinda like a little brother or cousin- I GO HOME TUESDAY - in time for pixie's birthday! so excited...have been learning coping skills in meantmie by a ffabulous neuropsychologist for bad days and how to remember its temporary and to honor that moment --- sorry if im babbling but as you see thinking is returning too - memory is another story but will b worked on too...

 

[nomoretears00]

Yay! Excellent news! LOL, she sounds full of energy.

 

[slave_]

Thank you for the updates! Please relay to Luna that she continues to be in my thoughts. Luna, you amaze me and leave me in awe!

litfan wishes you well and is horrified by what you are going through but continually amazed at what a wonderful soul you are! He sends all the healing wishes he can give and a Happy Birthday to the Wee One.

Very true! You go through trials with small steps and achievements, doing what you need to do while those on the outside are slack jawed at your strength.

 

[estragon]

Luna, please keep talking. God is listening. I too will keep bothering Her. Luna, we love you and are praying for you and sending thoughts. Much love.

 

[PennLady]

More good news from Luna

So glad to see this, and boy, can I relate to wee pixie being car sick. Someone once said to me, well, come on, that's all in your head, right? And I said, yes, until it's all over the asphalt.

Posted about 3 hours ago:

parents on way to pick me up!!! had to turn around few miles into trip because even with car sick medicine, pixie got car sick - poor baby - so have to wait to see her when get home...she did say "im sick mommy i puke all over, but i made you welcome home sign" my sweet little girl! AND got eye dr appt for friday and somehow mom managed to get the appt with the dr who came highly recomended for tough cases for next monday - aweosme...

 

[estragon]

On Luna's Facebook page 12 hrs ago:
"OME!!! snuggld and sang my wee girl to sleep after she requsted the same song over and over and over...got an attack of love by the furbabies, homecooked meal, shower, nad am exhuasted but feeling good about things...the dr to see me fri called today to check up on me and said as soon as we get a true diagnosis...hes gonna help us kick ass ".

Praise God from whom all blessings flow! And please keep praying for and thinking about that dear lady.

 

[PennLady]

So glad to be hearing good news.

 

[RedHairedandFriendly]

Thinkin' and prayin' that our Luna heals quickly.

 

[TE999]

So pleasant to see some positive news about Luna.

She's a tremendously brave and determined woman. Lots of love and good vibes going out to her and her little one. Continue to heal and become stronger, Luna.

 

[PennLady]

Just found this on my FB page, posted about 5 hours ago.

Went to dr. E's today he is happy with how I'm doing have to go for a 6min walk test tomorrow (they didn't tell me I needed to do it today, so I wore flip/flops) I was not goint to walk well in those.
My top goal is to get my dose to 15 right now, but due to edema in my legs we may need to take it slower (it helps when they put you back on your diaretic).

Sounds like progress of a sort, at least.

 

[estragon]

Found this on Luna's Facebook page, timed 11 hours ago:

"crappy day - strugling - was told id backslide once home, just ugh - sucks - very hardtime to talk or think today - more tests and dr appts lined up - least got dr on my side now - have to repeatt visual fiedl test in couple weeks - hard enuff first time round gonna be dificult to do another time but if it gets me somewhere, ill do it - just have to prepareagain"

Keep fighting, Luna! We'll keep praying and thinking.

 

[LettersFromTatyana]

Thanks for keeping us posted, PL and estragon. Even when it's not the best news, it's good to know she's still fighting.

 

[PennLady]

Posted about an hour ago (it's nearly midnight my time as I post this)

quick update - been rrough - lost 2 weks worth of time and memory 3 days ago - lost some musclememory - speech declining - a neuro follow-up that i dont remember went nowhere - today neuro eye appt yielded undeniable prooff and findings that there is a severe neurological component - got name of neuro (drs own friend) who will give me the full workup and lumbar puncture i have needed for six months and will figure this out and diagnose me finally - meantime got priism shield for sungalsses which is a quick fix allowing me to see SINGLE for first time in months - i cried! relief hvae docs listening and advocatinng, but wont lie im scared of what they will find - but stay positive cause fwd movemnt and bveing lead to right peopole finally and have hope knowing i wont ever be tossed out the dooror again - and the dr promissed me no neuro in right mind would look at findings and tell mee theres nothing wrong with me - yest single words - today full words but severe stutter...he says its all part ofi t and to hang in there....and so i do - thankyou and please continuet he love because its working! ♥ now im going to actually watch a show and it wont be doublevision!

 

[TxRad]

It is great to hear some progress with diagnostics is finally being made.

Love and good thoughts still being sent.

Thanks PennLady for the optimistic update.

 

[estragon]

Please continue prayers and thoughts for a wonderful lady.

Luna, I am praying for you every day, and I am sure many others are too. And thoughts as well.