Sunday, December 30, 2007

More Disturbing News

We got some very disturbing news for Christmas and just want some time spent together at home right now between the next visits and series of procedures and stuff with my son.
The Drs think he's having a series of TIA's and that they also think there on the right path direction of more answers. They put together 4 & 5 opinions and more Drs working together from the Boston Area From Children's Hospital, Mass General & the Brigham. Which on Christmas Eve came into my sons room with ALOT to tell and not talk about and no straight answers. From what they are speculating is that he's having some minor episodes of Central Sleep apnea being caused by lesions in his brain and/or possible tumor they can't yet locate which are from TIA's also known more commonly as mini strokes that you recover very quickly from but the technical term is
called transient ischemic attack also maybe accountable for some seizures and can be associated with epilepsy as well.
Therefore all MRIS, CTs, Xrays and other tests haven't picked them up as any structural damage. They happy with these results which gives them more reasons to look further into the brain function. They also found some dysplasia (isn't this abnormal cancerous type cells?)as well and are working on bringing him back ASAP into the hospital again for more diagnose reasoning testing and PET scan. They decided it's safe for me to bring him home while they set all this stuff up for a long term admission and started him on some newer drug that have some serious side effects. They told me about 20% of children on it develop a fatal rash and any skin changes at all to being him back....can't be late or miss 2 does would have to be seen, can cause bone marrow separation, also dizziness, drowsiness & blurred vision, headaches.. These are most common. They do think it's be more beneficial to have him on these types of drugs then nothing.
Some sections of his brain didn't develop properly, may have happened while in utero but nothing I did or didn't do, just happens and more common with preemies.
this is not benign epilepsy anymore, he wont outgrow it, is considered disabled and paperwork was summited to social security and he's eligible for past payments as well, but we wont get because gross household income to much were not living in total poverty, just on the poor side. whole other issue..
It's permanent , not fixable, curable or possible not operable.
So this horrible drug is suppose to help keep his brain at bay for a while. They don't' know the long term effects.
I'm suppose to be happy with this? this is what the neurologist call good news and heading on the right track . They may not ever be able to locate it on any of these tests/procedures they have to put my little guy through.
Oh and it's also goes together with ADD & low end Autism as well. (which they like to get him on some medication for that too but not until after the next admission and series of next steps are done first because other drugs maybe added Which they suspect he also has and accountable for lots of his temperaments/behavior issues... (hmm not because of everything they are torturing him and not many straight answers!!!)
oh and he has RLS to Rest Leg Syndrome. Unusual for a little kid.

I do one one thing right now, in all my years of living with a chronic illnesses and 3 children and lots of specialists! Neurologist have to be the worst with information and helping, explanations, answers reasons anything!

To me hearing all this is that they still basically don't' know and not sure suspect and guessing just isn't exceptable I want answers and want to let me little boy just be a happy kid and be a kid... I also want to know what this means for him which they can't tell me that either but will keep me informed step by step and will be in better communication.....????

I have so many questions and they can't give me direct and straight answers?? I just don't understand.
sorry wish I had better news and answers for everyone!
Him keep banging his head is OK just avoid trauma to his head.....hmm him banging could be just that it makes him feel better, jogging a mm sized thing(s) also make it harder for them to locate and try to get to it to or treat it....
Not sure and don't' want to jinks us here but I hope this is the last of bad news for this year!
I know we have a long way to go and very long road ahead.....the past 10 months haven't been very much fun either to get tot his point...

Some good news I have a package I need to open from someone! Along with a stack of bills and junk mail! Hmm Where to start???
oh yes Santa did visit us in the hospital....It was nice not the same but nice under the circumstances.
He's a little happier, holding up quite well through all of it and being so brave I'm very proud of him!! He looks and appears to be a typical 6 year old boy whose on the bit of a small size then most but good! He has a few cards to open from his class & teachers... How sweet! ;o))

Thank you!
Hope everyone enjoyed the holidays and Best wishes for the New year!

Tuesday, December 18, 2007

Home and back to hospital

My son's surgery went well, he stayed in the hospital a couple days.. Good thing we had a HUGE storm!! Only thing ran out of cash!! only the coffee shop (Dunkin Donuts would take debit card!) They ran out of foods by the next morning too....and splenda...
So my sons beens home for a couple days, getting HIGH temps and bad pain stomach cramps must be an intestinal thing... chalking that up to catching something most likely of course slowing him down healing wise..
The Neurologists called me 3 times today.. They finally received faxes with some new data from studies last week. They discussed it and started going over and called me 3 times!! They say that the new data regarding mini stokes causing seizures and lesions that he may NOT have another seizure disorder and want him to come in first thing to see another specialist up to Boston! (when we get there to have the DR page the neurologist to do a conference call while were there)
They are extremely concerned about these diagnosis pertaining to the sleep observation, said they very harsh and serious conditions not to mention rare in an Adult let alone a 6 year old...
The Neurologist did say I should be able to take him back home, but she is arranging a plane longer stay in the hospital ASAP!!! She's on rounds in the inpatient unit for a couple weeks and would like him to be there with more monitors 24/7 for a long stay??? I guess it takes a few days to set up with the observation inpatient unit and getting a bed...
Theres a good chance we'll be staying at the hospital through the holidays...
I just really prefer that the figure this out fix him treat him do whatever! They did also tell me YES in fact with this happening if it's really if and something else isn't being overlooked then potentially he won't ever be able to drive or work!! Don't think he'll out grow it and just the beginning on a LONG road for all of us! the longer it takes and he develops more scaring on the rain.. NOT GOOD!!
Just beside myself tearing us all up! DH & I fighting really badly! Wants me to stop babying him! OH NO!! I'm not! He's in denial!
So much for baking & cooking! Finishing shopping, wrapping of anything!I just want to curl up in a ball and cry!

Monday, December 10, 2007

Sock Wars & updates

Sorry it took so long to get the sock wars photos up and updates. It's only taken me 2-3 days to do this post...

there thick & comfey

First year I could get my son to get close enough to Santa for a picture

We've had alot happened in the past week or so now .
My son woke up one night and was scared, couldn't speak or get any air in to breathe.
I tried everything I had for emergency medicines waiting for the DR to call and he was getting worse so I didn't wait to ran him to the closest local ER.
They took us in immediately when they saw us walk in and me carrying him.
They first found out they couldn't see down his throat it was closed and swollen. Not tonsils either. Stenosis of his upper airway. Low stats, heart rate under 50 and this wasn't an asthma attack!!
kept him on monitors with low O2s, etc. gave him high doses of steriods to get the swelling down right away,etc.
They did a sleep observation overnight and found out he's having clusters of mini stokes, causing seizures and lesions on the lower part of his brain. The lesions are not sending the proper signals to his body to tell him he needs to breathe when he's sleeping. We're so very proud of him, being such a big brave boy through everything!

They also gave him a couple new diagnosis's. The said he has centralized apneas and RLS which is rare in adults let alone children. Which need to get treated immediately or corrected up to the neurologists. First they need to do a surgery tomorrow morning to help his breathing issues first (of a couple or so) and fix the stenosis of his trek. Then afterwards healing time before the next route.
The DR thinks that all of this is contributing to his learning issues and behaviors issues and his IEP at school. They still think he may be somewhat high end Autism.
I had to get a seizure monitor for home to monitor his o2 and movements during the night.
So I haven't be online much nor will I be in the coming weeks.
he's out of school for a while hopefully he'll be ok to go back in Jan.
I can't enough concentrate long enough t relax and do any knitting or anything really.

We're not even thinking of the holidays either.
They did have their holiday pageant and my son was so scared and looked as though he was going to cry on the stage!! Beforehand he was singing Jingle bells and so excited...(he doesn't do well in crowds, just doesn't like crowds or loud noises and music, he never has)

then The principal and vice principal took my kids to a holiday concert with a couple of their friends this past weekend. Kinda expensive to.. the ticket stubs were $45 per ticket! YIKES! (my son wouldn't get in the pictures at the concert hall downtown)
I'm just glad he got to participate in some holiday festivies. He's going to miss a few but its ok as long as he gets well soon!

Thanks for the notes and sorry it took me so long to send out updates!
Thanks so much for all the thoughts & prayers & for all the support!

Hope everyone enjoys the holiday season!
Hope to be back soon! (will check emails but can't promise it'll be everyday so please be patient on hearing back from me

Friday, November 16, 2007

Yarn Porn & Brief updates & Fos

Update of Sock Wars is that I've sent off my socks and killed and have received mine afterwards. Will upload photos over the weekend of the ones I've received.

Here's some photos of the ones I sent out.... with my little baby gnome I made as well....

I use a gorgeous very soft luxury Alpaca yarn for a little luxury for my targets feet!

Worked out a swap for some Fleece Artist Wool/silk & sea silk sock yarns

since there was no labels I'm sure sure which is which exactly but some lovely colorways thats for sure

quick update on my son is we still have no answers the DRs haven't figured it out exactly and don't' know whats wrong they do recognize something but want a different opinion from other DRs at a different Boston Area Hospital besides Children's Hospital... Errrr! So very frustrating in the meantime we've been weaning him off Meds and dealing....

Monday, October 22, 2007

Birthday & FO & crisis's

Inbetween small crisis's my little one had his 6th birthday
He also insisted on a 3D baseball cake!
That he got I managed to jungle that in somehow, don't' ask I have no idea.
I don't' even remember doing it really..

2 days after his party he had a very lengthy type of generalized type of seizure, once I realized what was going on and had 2 drs on the phone, yelled for a neighbor to help and had to get rid of all the kids that were in my backyard, call 911 and stay with the DR s on the phone telling me what to do and not do... while waiting for 911 response to show up. When the fire Dept & ENT showed up he was just coming out of it and becoming semi cautious, thank God it was well into 10-15 minutes by then at least! It seemed like ALOT longer....
the DR also sent him home with an EEG attached to him for the entire week...He's had way to much seizure activity and the machines battery packs kept running out within hours.. I guess apparently he's been having clusters of them 50-100 per day which we have no way of catching.. How could anyone.. (still beating myself about that one)\
I did managed to get these socks done for him, which HE LOVES! He wants to wear them all the time. Pattern from Vintage Socks Child's French Sock, I used Trekking XXL size 0 needles.
Now he cant' wear socks without shoes on at all because it can create static electricity and give his brain shocks...

The DRs don't' understand and seem to think it's another form of epilepsy then originally diagnosed with back in March of this year.. It's definitely not an easy one to deal with and also effecting his entire brain now not just partial as I was told in the past.
Not sure how to treat yet eitehr.. I'm so frustrated and have had to deal with the school NOT meeting his needs and saying he shouldn't be in school, even though the DR wants him to be.. So The superintendent has allowed me to be his shadow in school because they don't want the responsibility or liability of him while in school, so now I have no time in my life for anything else...

EDITED TO ADD:on top of this on Friday late morning I had to leave the school for another emergency with my niece She went in for a routine surgery like I had last year on sinus's and deviations of her nose.. well after they brought her to the OR her mom left for a while, the DR said about 4 hours or so.. We never expected after she was put under for anything to go wrong..Well after about 1/2hour to an hour into getting her asleep and preped in the OR,etc. They tried several times to incubate her but totally unsuccessfully. Then did an immediate pedi scope etc.. (she's 24 y/o) and still unsuccessful so they DR couldn't go forward with her surgery as planned and called immediately.. Well they believe that her tracheal is smaller then the inside of a straw..Normally it should be about the size of your thumb... Extremely narrow and very serious., She was moved to the ICU unit which I seen her between leaving the OR recovery room and before getting up to the ICU.. I walked with her, she tried to talk to ask about my son... She's so sweet but I was more concerned about her at the moment..
I'm helping her mom to get her up to the Boston area hospitals and the appropriate care and treatment plan. Possible totally reconstructible surgery with prosthetic trachea..or whatever they recommend but most likely not a good candidate for any stents ..All her life the DR keeps getting on her about her breathing that it's Asthma.. Now the hosptial is convinced that she probably doesn't have asthma yes on allergies ...
Also that anyone in the family that has been diagnosed with Asthma, premature at birth, underdeveloped lungs at birth, hmm oh and RSV an an infant as well would all be reason for this problem or even a cogentital birth defect.

Hmm yep my son will get reevaluated as soon as we get through the next few weeks with the seizures again and back to a normal dull roar around here. He was a premie, RSV, immature lungs at 40% at birth, has moderate to sever asthma...

She's out of ICU and home now on all liquid medications, including antibiotics pending further treatment plan until then she get afford to get ill.. Tough time of year with that one...

All and all Today has been a better day for all of the family.. Now to educate ourselves before all the appointments & meetings start up this week.

Monday, October 08, 2007

WIPs & TIPs (thoughts in progress)

I went to start or swatch if you will with the pink yarn for the Campanula socks and this yarn just isn't going to work out.. So back to dive into stash to find something or maybe a totally different color who knows.. hibernating now....

So I proceeded to work on a sleeve for the Everyday Cardigan using Lane Cervinia Londra (alpaca/wool/acrylic blend)This one will most likely be a gift because I have a different yarn in mind for one for myself....

Friday, October 05, 2007

Breast Cancer Awareness Month! Join the KAL

Of course most of you know that October is Breast Cancer Awareness Month.
Stop by and Join the KAL/Cause for Campanula for the Cure if you haven't already

I have't been diagnosed with breast cancer but was 18 years ago with cervical cancer,a few surgeries, a hysterectomy and minor set backs, very lumpy & fast growing breasts these last 5 years which had a large recent reduction (14lbs!) but am finally totally cured and finally cancer free for 5 YEARS next month!! WoooHoo!! Definitely a reason to celebrate for sure!!

I found this beautiful pink yarn, the perfect pink shade too I thought

what do you think?/ 500 yards and ohhh so very soft!
I need to cast on very soon!! Sock Wars and Tea Swap 4 is coming soon!

Hope to see some familiar faces over at Campanula for the Cure!!

Happy Knitting and Have a Enjoy the LONG weekend!

Friday, September 28, 2007

SP11 Strikes

Sp11 appears with goodies!
Pretty packaging too

Inside I found a belated birthday card, which I'd assume she made.. Very neat with approx. 4oz of chocolate roving (which I'm assuming is a merino) ohhhh yum!

then a couple skeins of Crystal Palace newer veggie sock yarn Maizy Prints in Night Shades which is very neat I'm designing a new pattern for Crystal Palace with some of their new yarns but didn't have this colorway.. Hmmm Wonder if my SP knew this one....;o)

some neat goodies here too some black sessa assam tea from Premium Steap , a package of Knit tags from Rosie's yarn cellarwhich you hand sew on garments.. Very cool! She also included a couple samples of Soak.....looking forward to trying the citrus scented one..

Thank you very much my SP!!!! I wonder if you knew me before and where I shop??? hmmm Still I have no idea who are you are....;o))

Monday, September 24, 2007

Weekend Activites

I've been so busy uploading info to Ravelry!! It's addicting let along time consuming
here I am over there

other than that weekend news wasn't much knitting did get nearer to the end of Picovoli

A trip to Keith's Farm with a couple neighbors and kids
mine love to climb the trees for those apples

my other neighbor got a little stuck between some branches...ROGroundLMAO!

she also had to get this ugly gourd for her steps

these are different, the pumpkin looks like a strawberry

my other neighbor and her son struggled a little at the pumpkin patch.. First time city girl on a farm...heehee She actually had a good time! Hey I'm a city girl too at heart! ;o))

see I'm the more plain simple and normal right??

Ok maybe not totally normal my kids painted their pumpkins

Friday, September 21, 2007

A New Favorite!

here's some beautiful EWA-Sockenwolle sock yarn that purlpower had sent me last year

see it has 4 strands plied together...

which I finally turned into these lovely socks.. Just a plain s t st sock with EOP heel so I didn't take away from the beauty of this yarn..
A perfect fit, most comfortable pair of socks.. A new favorite for sure

such a generous ball of yarn with this leftover, 33grams left!!! a third..

Some Spinning more gray merino

Thursday, September 20, 2007

Maybe Ravelry Very Soon! I'm IN!

# 31 people are ahead of you in line.
# 19026 people are behind you in line.

so exciting!! today just might be the day!!! I'll let you know!

Edited to add!!

YEAH I'm in!!

to keep it short & simple

I'm soapy over there!

Wednesday, September 19, 2007

Surprise Mail Call & Quick Updates

New present came in the mail from Laura yesterday!
the box is very pretty much nicer in person the photo does absolutely no justice at all! Made of wood ~

Inside some wonderful exotic teas! teabags of each of 6 different varieties..
Bostons (by Bentley I believe) Oriental Green tea, Earl Grey Green tea, Mint Green tea, English Breakfast tea, French Vanilla tea, & Chai Tea..
Pretty ship on the front/back of each packet too...
Thank you so much Sweet for thinking of me!! It's a gorgeous gift set and will enjoy very much even after the teas are gone.. Will be thinking of you with each cupful too! ;o)

Now I just couldn't' resit this Hershey Kiss! What chocolate lover could?? Not this one thats for sure..... It's actually a tealight fondue pot...ohhhh I bought all kinds of fruits now to melt some chcolate for dipping fun!! YUM!

One of the kids has been home since Friday from school sick so been tending to her alot, keeping up with schoolwork, DRs twice and hospital for 3 x-rays and blood works.. So far viral & sinusitis and possible sinus infection about to brew.. The chronic brutal cough has been so annoying and the entire house has had very little sleep in result of it..
Have managed to get a little further on some WIPs, will post about later in the week and a FO
Watching the sneak peak Grays Special tonight....Woohoo!! Need to get the little ones in bed early..I hope I don't' fall asleep during it from pure exhaustion!
Besides still recovering form surgeries myself...Had a small setback from a small abscess (which luckily didn't get into my bloodstream) but otherwise recovering nicely
Got a new prescription for some feneghan with codeine hopufully my DD will get a good nights sleep tonight!!

Sunday, September 16, 2007

Never Get Lost Again!

Not with this nifty gadget thats for sure. It's a Magellan Roadmate
my hubby & I borrowed a neighbors GPS over the summer a couple times and he loved it so said it'd be a good birthday gift..hmmm
I wonder for who????

really wish it had a sexy mans voice though. lol Instead of the usual ya know computer bad I can't find a site that offers downloads to GPS......bummer!
It did include a home charger, and yes it's portable very cool. My son takes it with us to the bus stop so we don't' get lost, (just up the road 2 houses to the corner).
Also a USB adapter but having issues trying to download updates at the moment...
I tried to tell my son it's my little PS2.....heehee of course now he wants to play with it all the time...duh!? What was I thinking.

DH also gave me A Gretchen Wilson CD'One of the Boys' (which I've never heard of) and Dream Girls DVD (which I haven't seen, wasn't real excited too either) but very excited over the Mega bag of M&Ms....LOL

Wednesday, September 12, 2007

Birthday Presies for myself

Celebrating 29 AGAIN!

I think I went a little over board.. opps,Oh Well, and how funny it all shows up within 24 hours

a HUGE skein of CTH Sock It To Me sock yarn approx 7 oz 952 yards for socks of course!

here's one side the red/purple shades

and the other side shades of reds

then I got a bag of Louisa Harding Kimono Angora... oh so yummy I have no idea what to make with it so it'll be for petting, to stroke & cuddle right now, until it grows up

15 skeins of Contrasto by Skacel, but at the time I had a project in mind and since I received it, I haven't the foggiest what I wanted to make!!!! YIKES!

a few Ebay purchases some 800-1600 yard cones of cotton, rayon, linen to weave with
maybe towels

a luscious 100gram skein of Sontata rayon/cotton/cotton chennile/silk blend. I think it's make a very cool pair or two of ankles for sure

3 skeins of Hempyarn I bought from Zonda to make wash cloths and/or sock sacs with the leftover

part of my KP order some gloss a couple skeins of Serengeti for me and Woodland Sage for someone else in a swap

and Charmed Knits need to make some gifts. My neighbor had asked me to make a couple of the scarves already.. Now I need more yarn!

Of course 2 days after I place my order the New Harmonycome out and I really want them but now I guess I'll have to wait.. Spent way to much money already.....

Tuesday, September 11, 2007

New Color Panda Wool

Ohhhh This yarn is so yummy!
A New Fall color Panda Wool by Crystal Palace is Chocolates

I'm designing a new pattern with it to be published in the upcoming New book called Friendly's Sock Book #3. Check here for more info on upcoming release

I wish I could show you more of the design I'm so excited about it, it's a beautiful lace pattern is all I can say.. Sorry; this pattern was a perfect choice with this color for sure.
Here's a picture of the yarn knitted up... so sorry to be a tease but this is as much as I'm allowed to show....