SLOW DOWN

February is a short month, but WOW where did it go?? I've been running my butt off EVERYDAY going here n there for Ms Avrianna's activities and doctor appts for Danny n myself .....you would "think" I would be shedding off the butt ~ NOPE. This Monday we went down to CHOW for Danny's Orthopedic appt. I was going to cancel it, but I'm glad I hadn't .... I TOTALLY Jinx myself on the last post as after I wrote it down Lil Man MUST have gotten access to it and read that he was doing well. So he decided to turn it up alil bit ....He's been teetering with respiratory crud, nothing full blown, but alil more attention is needed to be given. I just did a spit collection this morning to be sent to be cultured, just to stay ahead of the game, in case things turn. We've also needed to put his leg brace back on due to more discomfort :( While we were down in CHOW for xrays to monitor his VEPTR rod growth I mentioned that his leg/knee is STILL bothering him so they added addl xrays to take a look again. Unfortunately there still is no definite for why Danny's knee is bothering him. I got a "Keep doing what you're doing, as long as it helps" speech. It's alil frustrating, but at least we were able to get it looked at. Theory is that in the OR room, with his gall bladder removal, they moved him, forgetting that there is no hip on the right side and traumatized it in some way. BUT as I (and alot of you reading) know....what happens in the OR ~ Stays in the OR, so it's just speculation.

I know I've shown you this before, but I'm just in amazement at the correction.

Here's the before the VEPTR xray next to the NOW xrays ~ not only is the correction impressive but look at ALL that hardware (Trache, med port n cath, 2 VEPTR rods, G-tube, ITB pump n cath)
I thought this angle was neat.....they normally don't get his head in there. I know I'm weird ~lol
Danny is scheduled to get grown out again on April 24th. That will work nice as we are planning on going to Florida for spring break, so alil nice R&R in the sun and then we'll be all refreshed for surgery.

After Danny's appt we made our trip to The Cheesecake Factory........YUMMY, that makes it SO WORTH driving down! Unfortunately Danny's dysautonomia "episodes" are back and in full force....even in a restaurant they pop up. At least it looks as if he is having a great time. Again I know I'm warped, but how can you not smile seeing him smile like that. Even if it's coming off an episode :) We are going to see his Neurologist in 2 weeks to go over more options to see if we can help control this NASTY CRUEL disorder.Danny got his new Cascade AFO's last week ~ Avrianna picked out the patterns....she's so proud :) I think they turned out pretty cool. I have to admit I was alil concerned with what all the colors were going to look like, but she did good!
I think we have the start of a Halloween costume here.....my cane and Danny's old AFO's , I can work with that :) Now maybe a house coat and a wig of grey hair, LOLI laid Danny on the floor the other day and Gunner made himself very comfortable with his BFF. I have to say Gunner is WONDERFUL with Danny.....Danny is HIS person.He is Danny's protector ...... It just makes me SMILE :)

Ms Keren and Avrianna are busy getting ready for St Patricks' Day and the art projects are in full swing. I can't wait to see what they are going to do. All I know is they looked like Ogers with all the green paint on their hands.

My Angry Bird ~ All bundled up to visit Dr Kasper for an ear check up.

Last night was pictures for the Wave swim team. I can't wait to see how they turned out. There was about a 45 minute gap between her individual pics and the Group Team photo ~ I couldn't keep her out of the water. Her dive team was practicing at the pool during pictures and next thing I knew she was in the water. Oh well, why not have wet hair for a swim team picture, right? At least her individual picture her head was dry.
This girl has got me running crazy to get her to her after school activities. Well I guess most of it is my fault for signing her up, but she is enjoying it and it keeps her occupied it's better other then sitting around home being a bump on the log. I'm really glad she is so active :) She has Dive every nite after school from 4-5:30, then Piano on Mondays, Art on Thursdays, and then throw in a school function of skate nite or Girl Scouts on top of it which makes us busy bees in the evenings. Next fall she I believe she wants to do BOTH dive and swim so I think she's going to have to chose what days she wants to do what as it will be too much to do both in one evening. I'm just tired thinking about it.

I am getting geared up for a Wildtree Freezer Workshop here at the house on Saturday. I was alil disappointed in the turn out, but non the less we WILL have FUN! We are getting together and prepping 10 freezer meals with Wildtree products. I LOVE Wildtree and what better to cook with them, with some of your girlfriends, and I'm almost POSITIVE there will be some cocktails too. I will DEFINITELY be having another one of these later this year. I think it's going to be a great time, PLUS I will have 10+ meals already done and in my freezer. I can use that will all the running around we do. I am also planning a Game nite on St Patrick's Day with a few of our friends. Just alil friendly competition and again cocktails, but I'm sure these will be green. Do you see a common denominator here?? And Yes I do like to plan get togethers. I'm really looking forward to the surprise party at the end of the month.....I hope I can pull it off (you never know....it could be you) LOL.

Thanks for stopping by to check on us!

I Matter

WOW ~ who needs to go to therapy when I have YOU guys! I'm truly blessed to have a great support system. I can't express how appreciative I am to have my blog family. You guys are amazing! Even if you haven't "reached out" I can SEE that you care, by all the visits my blog has gotten. I don't know why I strayed away from here as I know blogging is MY thing...to get it ALL out there ~ the good, the bad AND the Ugly. It's MY outlet and a place where people can go to see what we're up too, feeling, and going through. A place I can write down everything that is spinning in my head. Not only to just capture it (so I can stop thinking about it), but a place I can also hold myself accountable.

To show someone else that may be out there that they are not ALONE. I'm NOT perfect ....

I'm just ME!

Funny how I don't look at or treat myself the same way I would others. The drive I have to take care of my kids and give them the best quality of life is my STRONG point, don't mess with this MOMMA BEAR, but when it comes to me.....well the spark is not there.

I SETTLE

I understand that there are things that I just have to settle with with my life, but then there are others things that I just NEED to do. I need to push myself to BE out there. I need to be honest with myself.....I guess I've been in denial and suppressed many of my "feelings", I've coasted along, numb of my emotions. I put a smile on my face and went on as if life is rosy. So was I crazier to make things looks ok, or am I nuts now? I'm struggling with what's the right way to "feel". I look back at what I wanted for my life and I just wanted to be "simple", a wife and mother. My life should be GREAT, right? I'm married, I have two wonderful kids, a beautiful house, I don't have to worry about finances BUT here I am..........struggling with myself.

Filled with WORRY and ANXIETY!

There are SO MANY things that are out of my control. What in the hell makes me so damn special.....to not only "endure" all of this, but to be the one to be in "control" of it all too. Am I really good enough? Am I strong enough? Why ME? "Life" hasn't been the easiest and yet I've pushed through....... so why do I KEEP getting MORE? What a cruel joke....lets see how much Lori can take before she snaps!

Will she?

When?

So after my last post I really didn't know what I was to do or where I needed to go, but I knew I needed something......ANYTHING! I am floating out of reach with myself and I just need to get grounded. Even though it was hard to admit and "expose" my feelings last post I felt this awkward sense of "help" after hitting PUBLISH POST. That was my first acceptance to change ..that I needed to come back to ME. I NEED to not only treat MS, and take care of the kids but I need to treat and take care of MYSELF too. Why do I always sell MYSELF short? I know it's going to be a long, tiring, and forever going trip but I NEED to do this. I realize it's NOT going to be easy and some days I will feel utterly defenseless and defeated, but I will continue to push through.

Lately I've come across some weird "encounters" with the "media" (aka tv, book,s and radio) as they seem to know what I need. Let me explain (I'm not TOTALLY NUTS, I swear)....right after I posted my last post I sat down to watch some TV. What was on? Dr Oz, who had Montel on the show, talking about his MS treatment that has helped with his energy levels. Well wasn't that Cool ... I need that !! I was excited - For the first time in a while, I was excited! I went straight to my computer and started to print off all of his advice. I think it's a START - it's right in front of my face, how much more clearer did I need the message to get moving. It was a wake up call. One of Montel's statements was, "it was time to get busy living instead of getting busy dieing". In not so many words I say this all the time towards Danny's quality of life so why didn't I connect it to mine? Guess I just needed to hear the words.

Here are the linkes to the show:

http://www.doctoroz.com/videos/montels-energy-plan-pt-1

http://www.doctoroz.com/videos/montels-energy-plan-pt-2
http://www.doctoroz.com/videos/montels-energy-plan-pt-3

The next morning while I was getting ready these two songs play back to back and I had this ah ha light bulb moment

"Who Says" by Selena Gomez -

I SAY!! It's up to me! No one is going to do this for me, so I Say it time to get out of this funk!

"There She Stands" by Michael Smith

I know this song is about the Statue of Liberty and how she stands after all the diversity, but I can relate. I WILL stand!

I bought some books to read on MS and the first one I started is "Awkward Bitch" ~ it's wonderful. This woman is heart felt, raw and TRUE! She calls it how it is....MS SUCKS!! Not only is this a painful physical disease, but the emotional craze is also very very REAL! Not knowing what the next day, hell the next minute, will bring, is very SCARY. Not to mention enduring daily pain and vision issues is enough to send anyone to the NUT house. Depending on the day I even feel as if I've already entered the funny farm, when I look at things and it looks like I'm looking at them in warped blurry mirrors.... I can only imagine the effects it takes on my "abilities" of which I either don't notice or will tend to ignore. I've acknowledge that I have MS but I haven't excepted it yet....does that make any sense?

There's been a lot going on with me & Danny, many would say this....whatever I am going through, is justifiable. BUT in my eyes it's not me, it's not ok, and I'm just trying to figure it all out.

The kids are doing well. Avrianna is LOVING dive and continues to do wonderful in school. Tonight she is on a date with her dad they went Bowling for a Girl Scout event. I hope they have a blast. Danny is (on the Danny scale) doing good. He's been teetering with a respiratory funk not a full blown illness but just not his "normal". He's been having A LOT of neurological "episodes" again and we are waiting to hear back from his neurologist on what we should do. The pain in his leg has been doing much better and for that I am thankful. Seeing him cry EVERY day was a killer, I'm NOT going to lie. Dan has been a busy man, I know BIG surprise. The newest Clothes Hamper Coin Laundry is due to open the end of the month. It's located in Oshkosh on Jackson St. Things are progressing nicely and the store is looking GREAT!

Thanks for checking on us!!

Just keep Swimming, swimming, swimming!

I'm afloat in large, deep waters lately ... some days wondering if I have the strength to stay afloat or am going to sink. I'm stuck in a rut and it SUCKS! I can't understand where or why this has reared it's ugly head, as it's not me.... I'm distant, tired, agitated, anxious, it's hard to concentrate, I'm just

* HERE *

with no drive or care to do anything. Honestly it's difficult to even blog these days...I know right? Right there is a RED flag. It's really hard to swallow personally, I'm always "in control"....or has it just been a front and I'm really spinning OUT of control? I'm questioning a lot lately.....everything . Why can't I just swim to shore and get back on my two feet. It shouldn't be this difficult? But right now it is......

I know right from wrong and the way I'm feeling and thinking lately is just

*WRONG*

Yesterday I had an appt with my neurologist to follow up with my MS and then to have my monthly infusion. I knew I had to say something to her, despite the fact she might throw me in the nut house if I do talk, but I'm

*TIRED*

and right now the shoreline is nowhere in my sight....so I needed her to know I'm NOT me! I know if I can't be honest with her then I'm not being fully honest with myself. I'm scared to all hell that this is something that I won't or can't get a handle on. Am I

*CRAZY*

What's wrong with me? Why can't I get a handle on this? All the symptoms I'm having could be progressive MS or anxiety n depression but from where I'm sitting I'm not sure which one I'd rather be. I don't want to "feel" like this for the rest of my life.

*BLAH*

I'm a work in progress and ................... I WILL keep swimming!

This isn't suppose to happen.................

This a "normal" comment I get, directed towards Danny's medical status. So when the ENT stated this yesterday about Danny's ears I just had to chuckle as I've heard this more times I care to comment on. Gail n I both looked at each other and shook our heads. Does it surprise me .....NO. It does make our journey more complicated....YES, like we need more complications. Our journey is FULL of bends, twists, and pot holes. It's kinda funny when the Dr's get that ah ha light bulb moment.....Danny IS an enigma. I know Dr Martin is working very diligently to help me get Danny's ears healthy, but I also know how frustrating it is for him to keep running in to road blocks continually. Here is what I know...his ears are bad :(. The right ear looks awful full of white n yellow cheesy/pussy goo, bleeding, and the tube is out. The ENT cleaned out as much of the goo in the right side as he could, and it will be sent down to be cultured. Hearing the suction machine suck all that out of his ears is just WRONG, YUCK. While the ENT was cleaning out the right side he was able to go in a retrieve the tube that has fallen out. This got Dr Martin on the not so nice list really quick. The left ear, even though it doesn't "look" as bad as the right has got it's own alarming issues. For whatever reason the left side had bled at one time and left a bloody film over the opening which is clogging the tube now. The tube isn't positioned correctly either so the drainage doesn't have a chance to come out which leaves it all sitting behind the ear drum. I'm almost positive we'll be heading back down to CHOW to have the left tube removed, but we are sitting tight till we get the culture results from the right ear. What is determined to help the right ear will also aid in what we will do with the left. SIGH!! I HOPE we can get a "fix" for Danny's chronic ear problems. That HAS to be painful.....it breaks my heart. It doesn't help he has had issues with his ears before the trache and vent as they only aid in ear problems. I'm hoping we get at least a preliminary report before the weekend so I can treat whatever it is that's having a party in his ears.

While we were in CHOW I was able to sneak Danny into see the dentist and get his teeth cleaned. I've been pretty lucky at getting Danny in on same day appts, yay! Danny has been lacking on the dentist visits, I think he has the same anxiety as I do with the dentist, because every appt we had this last year I've had to cancel due to illness or surgeries. His normal dentist has left since the last time we were there so he was seen by a different one. I LOVED her!! She was fantastic with Danny (and Mom). Of course when the appt was over she informed us that she too will be possibly leaving to a different establishment. Grrrrr ~ why do all the good ones leave. I think CHOW needs to invest in more of the ones that are leaving in hopes they stay. So it looks as he'll be getting a new dentist yet again. I'm always on guard when it comes to coming into an appt with a Dr I don't know. I can only hope that the rest of the dental staff is as great as the last two even had.

After we he was done in CHOW we just HAD to go to The Cheesecake Factory for some great food. I left there Fat n Sassy, lol. It's always a wonderful treat to be able to go there. It's even better to be able to go with great friends :)

Once we were home there was no rest for the weary because PT was already there waiting for Danny to come home. Danny was casted for new AFO's. He's been long over due..his last pair were made 7-08. Funny thing is, other then his big toe sticking out the front the rest of the AFO is too BIG for him. I guess in '08 he had beefier legs, feet, n ankles then he has now...he's more slim in trim these days. I can't wait to see what they turn out to look like as Avrianna picked out all of the patterns :) His sister will make sure he is "IN" with the style now.

Ms. Bailey is having a rough time lately. She's been throwing up more n more. I had her to the vet to run a bunch of tests n xrays. Everything panned out ok, but the vet is thinking a possible tummy ulcer. We started treating her for that but since then she's gotten worse....so tomorrow we are going back to vet .... maybe he'll "find" something else. I feel bad as I know she's already lost 4 lbs, she's loosing her beautiful coat, and she's getting sick all the time. She's 11.5 yrs old so I know she's getting up there in age which doesn't help either.

I've been busy planning a few parties/get togethers for the next few months. I thoroughly enjoy planning events. We'll just see how they all turn out. Wish me luck!! This next month I have an appt with my Neurologist for my year follow up. I can't wait to see her and talk to her about my MS treatment. I know I will be needing a MRI to catch up on how things have "progressed". I'm alil nervous about talking about my treatment plan as I will have been on the Tysabri for a year now. A wonderful year at that, BUT the chances of me getting the brain infection after being on Tysabri over a year is greater, sigh! What to do, what to do.

I will keep you posted!

Diving Wonder

Avrianna has taken to Diving VERY WELL! It's like she's been doing it for years. Even the coach has commented on well she is at diving!

Here are some pictures I took on her 1st and 2nd practice.....YES that's right the first time!! AMAZING, I tell ya...AMAZING!

Here are some videos of Avrianna diving!







Have I told you how proud of her I am ~ She ROCKS!!

Sorry but I just had to gloat!! LOVE HER!!

This house is going CRAZY!

Not only does craziness run rampid through our house ~ I swear I'm going to make a Welcome sign "Welcome to the Funny Farm". Danny has found a favorite book to read on the computer that has a vibrant loud males voice that says "this house is going CRAZY"! It's so great to see him engaged in a book and having fun. We are finding his head to still be the best location to put a switch for him to activate. He gets so excited to hear this book, that he knows what pages have this phase and will skip pages until he hears it. LOVE HIM!!It's well into January and we've finally got hit with winter weather n temps. It's been pretty calm around here for January. Jan 12 and we were wearing sweatshirts outside the weather was almost 50 and no snow on the groundThe next day snow snow snow. Winter is here and the temps are dropping :( Can't say I'm happy about it, but we do live in Wisconsin so I can't really piss n moan too much.

This white car, the driver unknown to me, decided to drive up my driveway and attempt the the round about. They went wide and found themselves stuck in my yard....literally as went so wide they were in the grass. LMOA!! I went out to ask them what the H*!! they were doing on my property but they were able to get the car free and drive away. Morons!! My drive doesn't look like a street so NO Trespassing.

We went into see Dr Kasper on Friday and he made Danny a smaller lightweight splint. We still have no concrete theory of why he continues to have pain in his leg. 1~ hair line fracture 2~ pulled tendon or muscle 3~ knee cap not running on right track. All of which needs "rest" to help recover. The first splint was too heavy n big so I'm hoping this one will help him better. We've increased his clonezapam which should calm his tone down more too.

Danny is still having issues with his ears. His right ear is just chronically yucky but now his left ear has decided to play with in game. Grrrr! Other then the daily pain and the ears Danny is doing pretty good.

Gail helped me organized Lil Man's closet once again. It was getting alil outta control.

Now it's all good :) and even labeled :)Our newest nurse Keren, who started in October. She's become a wonderful addition to our Family. She's been an enthusiastic breath of fresh air. I wasn't sure how Danny would tolerate all the enthusiasm she has, but it's been a wonderful thing. She is constantly doing stuff with him from books, to toys, to massages, she never give him a break. And I LOVE it!! He looks forward to her and Danny is so alert and vocal for her. I've seen him light up around her....I can see positive things between these two. What a great team of nurses Danny has, we are so blessed.

I was at school this last week to pick up Avrianna for an Orthodontist appt and happened to see this on the wall. I can so see her as a Nurse or some part of the Medical field...she's getting into all of that kind of stuff now. Too Cute!!Avrianna is ending her 1st phase of the Orthodontist. She was alil disappointed that she has to have one more month with the braces on, but she knows it's almost over with. Then onto an upper retainer. She will be having phase 2 done on the lower level but she'll have to wait a little longer before we start that.

Here's my AWESOME swimmer with her BIGGEST fan ~ at the Wausau swim meet last weekend. She did FANTASTIC improving on her times and her stroke etiquette is impressive.

Some of our silly swimmers :) What a great group of kids!!

She understands that ALL her practicing through the week has helped with her meet results, but with that being said she's reaching her limit. It's been a LONG season and she's worked very hard but I think she's burning out. She LOVES to swim!! So to keep the "spark" we are starting to dwindle down and give her some down time. It's been becoming a constant quarrel to get her to go to practice as when there, it's swim up n down in the pool for 1.25 hours straight. She does great but it needs to be "fun" too for a 9 year old and really it's not "fun" it's hard work. She's going to try something different the next couple months ~ to join a Diving team. We'll see how that pans out.

My treat to myself!! My first pair of Dansko's ~ I love them. The way they look, feel, and the statements. Gives me a lil pick me up :) This is their 20th anniversary edition and I fell in LOVE with them. Thanks to Keren for sparking my interest in these :)

It's been a crazy few weeks for me too. This last Monday I was able to go out with some of my support group moms for a few drinks before our meeting. I haven't been able to attend the meeting for a VERY long time. It was GREAT seeing them and be able to just ......... get out to unwind.

I'm starting to get why people just SNAP. I'm not sure how much more I can take on, the kids are enough to keep me busy and on my toes, but now I get more. This last month I've found out that in addition to my MS and crappy working thyroid I now have two nodules one on each side floating around in my thyroid. Right now they are just going to "watch" them too see how aggressive they grow. I also had my annual mammogram this week too and NOT to my surprise there was a new mass growing in the right side. Of course it has to be on the right side...the side with the Med port up in my chest, which makes the squishing alil more tricky. I had to go back the next day for more pictures and thankfully what was seen the day before was no longer there on the extra imaging.....so in other words they squished the girls so hard, the day before, it popped ~ lol. Another year until I have to deal with that again :)

One day at a time...right?!? I'm just hoping we can catch our break SOON. This house is going CRAZY!

Thanks for stopping by and checking in on us.

Danny's School Day

Jan 5th Danny went on a "Field trip" to his School, Coolidge Elementary...for the first time :)
Danny even got to see the Principle :) ~ It's was so nice so got to see him. We talk about him to her at the IEP's but she's never met him. Leave it to my kid to go to the Principle's office on the first day, LOL.
Danny with his Teacher's ~ Mrs. Bowers on the left, his CDL teacher who comes out the house to work with him and Mrs Weyenberg the 2nd grade teacher.
No play time for Danny.....they worked him hard. Here he is in the computer lab. Where PT ~Ms Nicole and ST ~ Ms Cathy joined with us
Danny checking out the smart board in his classroom. While he was introduced to his classmates. There are 6 other students in his room.
Even PT ~ Ms Karen came by to see Danny shine in school. She helped him do a project.
TOO Cute ~
The reaction I got after I asked Danny if he liked going to school :)
Visiting the school was great! I really enjoyed seeing Danny's reaction to the unusual surroundings. I really do think he had a good time :) I am so glad we went. It also confirmed that (even if he could) the school setting wouldn't be the right one for him. Not that they aren't doing a great job there, I just don't see Danny thriving there. He can absorb/learn so much more in his one on one that he gets here ALL DAY at home.

Sit down ~ hold on tight 2012

My Lil reindeer :0) ~ they are too cute!

We managed to stay at out of the hospital over the Holidays so we hunkered down at home and enjoyed playing with our new toys. It was SO nice!!

Don't let these faces fool you..............

they are NOT as sweet n innocent as they may look. Just ask the carpet guy who had to return to the house twice the last month, grrrrrrrr! Worst part about it as I can't tell you which one is guilty :(

Danny is ringing in the new year of 2012 in true Danny form ~ sigh. It's only the 4th and he's already thrown an ear infection, GI issues, irritability, crying and just today ........

possible bone fracture in his femur ~ Which could be the source of his irritability and crying lately.

Today we went down to CHOW for an eye appt for Danny and then I was to be off to my MS infusion. I was able to sneak Danny in for xrays of his right leg, which has been giving him discomfort, so thankfully Ortho was able to get him in for a picture. I was also able to have ENT check out his right ear as the tube in there has slipped out of position and has been draining funky goo. Once we were finished I got a phone call from the Ortho dept asking if we could bring him back for more xrays. Well that can't be good :( They really thought he had fractures in his femur bone so they wanted a closer look........ there are suspicious marks but nothing the really jumped out at them with the closer views. So the next step is some labs, a bone scan, and possible MRI.

Those fine white lines above the knuckle/growth plate could be fractures or just marks from a "traumatic" episode that has happened in Danny's life. Kinda like a tree with it's rings.

His knee is swollen and soar which the Dr was able to actually see so it was advised that Danny wear this splint for support until we figure out what's really wrong. It looks so comfortable ... doesn't it ~ NOT!!

Another PERFECT shirt ~ Gotta LOVE his attitude......I'm not sure where he gets that from, LOL

What a day today was! Tomorrow I should have a better idea when the other testing will be able to to be done. So we wait ~ Impatiently! Bring it on 2012 ~ I'm READY!

To end on a good note:

Here's a video of Danny chattering away. He's been vocalizing more the last few days which has been music to my ears. The last few months he's really lost the drive to talk, so to hear him once again just warms my heart. Boy have I missed his voice :)

Prepared?

8 years ago I wasn't prepared for .............. for what was about to happen to our family, the next day. I could have never been prepared for how devastated we would be and how fast our lives would spin in a tailspin. How can one be?? I was so clueless! Our family would NEVER be the same. I was prepared to bring my sweet baby boy into this world happy, healthy, SAFE!! IF only........ I had a crystal ball.

I stare at this picture more then I care to admit ~ This is the last picture I have with my baby boy healthy n safe and I can't even see him. But I know he's in there with everything working like it's suppose to... all his fingers n toes are wiggling, he's sucking his thumb, his brain is functioning, he's moving and kicking around in that small area (he's moving more in there then he ever will out in the BIG world). I was so excited and happy I couldn't wait to see my bundle of joy.

This is MY day that I set aside for myself! The day before Danny's birthday is My day to get it all out! To grieve for all the lost dreams that I had for my son and family. Everything that was taken away... in an instant it was ALL GONE. And once the damage was done there was NOTHING I could do to get it back or make it better! Today is the day where I can be ANGRY!! Angry that this happened, angry how it playing out, angry there is a world out there that my son will NEVER participate in, angry that he has to go through life in fear and pain, angry I will NEVER hear him say "I love you Mom"!! Angry that Avrianna will not have a "normal" relationship with her brother, angry that she has to worry about her brother more then she should!! Angry that I have to keep in the back of mind....is today the day? The day where I will see his baby blue eyes looking back at me for the last time. Angry that I have to keep this fear bottled up inside me EVERYDAY!! Today I pop the cork and let myself be sad. I GET to be SAD!!

Don't get me wrong I LOVE my son more then words can express and I would give anything for him. But I just wish he has what every parent dreams for their child .......... DREAMS! The dreams that he doesn't know exists :( I need to let it all out to be able to start a new, wipe the slate clean, a "new year's resolution in a way.

I did EVERYTHING right! So WHY!?! Where's the logic? Where's innocence? Where's the life I dreamed for my SON!!

This picture is the first I have of Danny, out in the Big Hard Cruel world! Fighting the ultimate fight~ one that no infant should ~ there was NOTHING I could do but hope n pray. This is Total helplessness! This Lil boy you see here will never be the same as he is forever broken. He was brought into this world and taken away injured and never fully repaired..... As you see the brain can NOT be fixed.

This picture has such raw emotions for me.............You can't even imagine! I am reaching out touching my precious Lil boy with only my finger tips wondering if that will be the last time he will ever feel my touch. Does he feel me? Does he know I'm there? Does he know I'm sorry? Sorry just doesn't seem to fit but that's all I could say, is sorry ~ Sorry my precious boy you may not make it through the night .........sorry you will never have what I wanted for you, sorry I will never know who you truly were. Amazing how all that can run through your mind in a matter of moments. How does one ever recover after something like this? Do they??

I wasn't able to hold him, talk to him, Kiss him, let him know Mommy loves him. All I was able to due was Just touch him with my finger tips....Will he continue to fight? Why would he, I'm sure he was scared, cold, and all he knows is pain. He isn't even breathing on his own, will he ever breathe? Then you sit and wait and wait it's so quiet, it's so alone, it's so helpless. I remember after getting the grim prognosis just crying out "OH my sweet boy".

After the dust settles you just want to scream WHAT THE HELL HAPPENED?!?! As it's goes by like a flash but will leave a lasting impression you just can't shake. I am forever scar'd. How terrible is that, on the day of your sons birth and even though he's here.....there is nothing nice to say? Traumatizing !!! Guilt!!! I too am broken :(

I look back at his 8 years of life and the Lil Man he's become. It's all at a very hard and painful cost, over n over n over again he's overcame diversity and medical prognosis'. We've fought the fight and we'll keep on fighting! I was trying to figure out how many times he has had surgeries (I should have kept better track of them) but I think this last one was 37. AMAZING!! What a road it's been and I'm grateful and thankful I am able to walk the road with him. I've learned so much from him and I've met some pretty amazing people along the way.

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Tomorrow I will celebrate your birth, your life, your accomplishments, our New Dreams!

Danny ~ You ARE AMAZING Lil Man and my hero....I LOVE You and will ALWAYS be there for you Danny ~ Mommy

I know you know different.....I just wish you didn't have too You are my Inspiration!!

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So now onto some updating ~

Danny's new wheels :0) We got it yesterday, just in time for his Birthday! He's only sat in it for a few minutes and I've had it in the house for less then a day, BUT this chair (so far) seems to be IT! All the little bells in whistles that Danny needs, but in a fun and functioning version. It's got everything plus it folds (somewhat) and is light weight! Not to mention the awesome color, heehe.

It's a Convaid Rodeo Tilt n recline :)
Thanks to Peter from Walking and Wheeling (Danny's Private PT) for setting us up with this sweet new ride :) I hope to put many miles on it

Yesterday Danny also got his staples taken out. The incision looks good. The area around it is alil angry as I believe he is reacting to the ointment we were putting on it. So we've changed to a cream in hopes that will help. He heals so well....I just wish his system would bounce back as fast. He continues to dance a fine line but we are able to control him at home. We still are making strides to recovery but it's 2 steps ahead and 1 back....but it's still forward :)

We did some labs on Danny at the clinic and all of them have chilled out and are reasonably back to "normal". We were able to discontinue the TPN and Danny has been tolerating his formula at full strength now we just have to work back up to his usual routines. That might take awhile but we will be working towards it each in every day.

I've been every busy working at the school with all the holiday festivities going on. Tomorrow is Avrianna's last day before winter break. I know she's excited about that as they are having alil pizza party and then no school for a week. Too bad we have no snow yet for the kids to play in over break :( It's going to be a brown Christmas over here. I am officially done with buying gifts and even the wrapping so let the Holidays BEGIN!! I do have to say I was sweating it a bit as I'm usually done long before this so I'm relieved to know I was able to finish WITH some time to spare.

Dan is busy building another laundry in Oshkosh on top of finishing his certification for Firefighting. He is hoping to have the laundry up and running near the beginning of February, but we'll have to see. My garages are FULL of laundry equipment, but don't worry I still have a parking stall inside :) And you guys say I'm the crazy one......I beg to differ, LOL. So he's not to disappointed that there is no snow from him to remove throughout the day.

I'm sad that our lifestyle just won't be fair for us to adopt. A few month back Dan and I had looked into the process again, but with the recent events around here that helped refresh me with previous events ...it's just not fair to our family to add to our craziness. Nor even fair to a child that we would add to our family with all the hospitalizations that I'm pulled away for. It wouldn't be so difficult if we weren't inpatient so much but we are so unfortunately we are not going to pursue adoption now. See it as selfishness or selflessness as with this one I'm not so sure which way of the spectrum it lies. Our lifestyle isn't easy....but it's US!

Thanks for stopping by to check on us! You are my saving grace, my outlet. If it wasn't for you guys and the support I get I would be even more crazier then I already am, heehee

Merry Christmas & Happy Holiday

Lori