Monday, February 28, 2011

Slow and Steady

Not too much to report over here. I guess that is a good thing :) February was here and gone, wow time flies.
Avrianna is finished with swim for the season. She has decided to not swim in the spring/summer season BUT she will start up again in the Fall/Winter which goes from September to February. There is alil break between now and when spring/summer starts so maybe she'll change her mind....we'll see. She finished doing VERY WELL. Her ribbon board received more ribbons from the last meet she had in Fond du lac. What a wonderful facility that was to swim at. Unfortunately another BIG snow storm hit as we were getting there on Sunday so once we were ready to leave the roads were AWFUL. Fond du lac had already but a towing ban on so IF we were in need of help we'd have to wait it out till after the storm had passed. Thankfully we made it home safe with no issues. Slow n steady :) Avrianna is pretty excited to have some time off. Swim is a BIG commitment with practice 3 times a week and then a meet that takes up one weekend a month so for her to be able to just veg around after school is a blessing for her. Right now Avrianna just has piano on Monday nites so the rest of the week she is "bored" ~ LOL, never a dull moment with that girl. She needs to be busy ALL the time. This weekend I am going along with her Girl Scout troop for a sleepover at the Children's Museum...welcome a late nite with a stiff back in the morning :) Avrianna is EXTRA excited as next Monday her expander is coming off. 6 months of having all that hardware in her mouth. I have to say I'm very proud of her as she really didn't complain about it at all. I know I wouldn't have been such a good trooper about it. I'm not sure how it all works with getting it off and going to the phase 2 which is braces, if the braces will be going on right away on Monday too or not. Of course this too will be something new so she can't wait to get them on....we'll see how excited she is a couple days after the braces are on, heehee. Avrianna is doing AWESOME in school...I'm so proud of her. She placed higher then the ADVANCED bracket for her Math and Reading state testing. WOW, that was a surprise to me for the reading as I had just got a letter in the mail stating she was struggling alil with it.....I think Avrianna does better with the written tests then she does with the oral ones. Yay! And Math well she is a WIZ I don't need to worry about that subject with her. Maybe she needs to be in a class that needs to be challenge her more, I mean higher then Advanced ~ WONDERFUL ~ Way to GO Avrianna! Unfortunately she had to deal with some school bus bullying but for the most part she handled VERY WELL and did what she needed to do and got help with it. She's a tough cookie but boy can kids be's SO SAD that kids have to deal with this at such an early age. I just breaks my heart :( But I'm glad she was smart enough to get help :) And cudos to the school for stepping up and helping her/us to defuse the problems.
Danny continues to be healthy :), I hope I don't screw myself by saying that. Unfortunately he still has ALOT of discomfort in his lower back hip area. I'm hoping that with growing the rods out and having the steriod injection in his hip area it will help with relieving his pain. It's just awful knowing that when I pick him up, change his diaper, or just reposition him that he'll cry. Pulling at the heart strings here :( We are going to have his pre-op done here by his Pediatrician so we don't have to run back down to Milwaukee. We might have to go down the afternoon before surgery to have his PICC line placed. I'm hoping if we do then they can admit him right afterwards so we are in house for the surgery first thing the next morning. It will be less stressful and less traveling for us if it can be done this way. I'm waiting for the Ortho dept to call us back with the details of what's all going to happen. We'll be talking with Danny's Neurologist this month about his "non-seizures" episodes and what is the best way to treat it.
I will be going in to see my Osteopathic doctor this week not only to crack every bone in my back in neck, LOL....but to have injections of steroids and numbing meds in the base of my head. The hope is to get rid of this headache!!! I'm alil nervous about needles going in my head/neck but I'm to the point that I will try anything. Next week I go in for my second dose of the new MS med Tysarbi. I'm so glad I had no reactions to the first treatment, but I still feel uneasy as I know it can have serious side effects down the road :( I have a follow up with my Neurologist in the middle of this month my stuff.
We have planned to go down to Florida for spring break. I am really looking forward to sun, pool time, and getting together with my friends down there. I really miss not being able to go down there for months at a time anymore. This trip is going to be alittle different for us....I'm so excited that Danny's nurses are coming down too. One of them is driving down with us and then flying home.....while the other will fly in and then drive home with us. It's going to be GREAT time!
Well so much for not having too much to report, LOL. Thanks for checking in on us! As always I'll keep you posted :)

Monday, February 21, 2011

Eye Candi

Looking for a great product to use for a fundraiser? Or just looking to get one (or a couple) for yourself? Check this out!

One of my girlfriends is making these wonderful pieces of jewelry that can be custom made with a picture, symbol, the sky is the limit. Click HERE and that will get you to her link and you can see what she can do. It's amazing!

Thursday, February 17, 2011

Follow up Appt

On Tuesday Danny, Gail, and myself went down to CHOW for a "Fun" filled day of appointments. Ok there is alil sarcasm here, but we did try to make is a "fun" as possible.
Our first appt was to have Danny's spine and hip xrayed so they have a guide line if/when they do the rod lengthening. Once we got up to xray in the ortho dept of course Danny was NOT on the schedule, grrrr. I had multiple email conversations with the dept reassuring me that Danny would be on the schedule so we were to just walk in when we got there. So they had to track down the Dr to be able to put the order in the system. Grrrrr! Luckily we only waited an add'l 20 minutes, the xrays went smoothly, and we weren't late for his second appt :) Yesterday they got back to me with the xray results and the right hip is dislocated, the left looks fine and his spine has started to curve once again, so he is indeed ready for the rod lengthening. It is scheduled for April 1st (no joke). It's suppose to be a day surgery, but we all know Danny (and even the doctors are starting to figure that out) so he is going to be admitted afterwards. I'm not sure how long we'll be there but I'm hoping to be home no later then Monday. Now that might be a stretch but maybe Danny will surprise us for once and this will be a breeze.
Danny's second appt was the trache/vent clinic. This one is a long one, BUT they all come to you, this is SO NICE. We saw a dietitian, respiratory nurse, trache nurse, ENT, and the Pulmonary Dr. There was a few hiccups in the paperwork there, but other then that is was a good visit. We got the "you guys are doing a great job, he looks wonderful, keep doing what you are doing" :) With the exception of the ENT having us come down to his clinic to have Danny's right ear cultured. Danny continues to have goo in the right ear (ALWAYS) so the ENT sucked out what he could with his lil machine and sent it off to be tested. We'll see what Danny is still growing in his ear. Poor Lil Man always has ear issues.
Then from there we had about a 45min lunch break. PHEW! The hospital was starting to smell like food and my stomach was chatting :) Unfortunately this stop to CHOW didn't give us enough time to take a lunch at The Cheesecake Factory, but we did find some cheesecake for dessert, not the same .... but it was good and got rid of our sweet tooth :)
After lunch it was off to Radiology to have his Kidney and bladder looked at with an ultrasound before his appt with the Urologist. The images still show a stone/pocket of goo in his left kidney. BUT it hasn't grown or changed so we are just going to watch it......and see you in a year. Whooo hooo!
Danny's last appt was to have an EKG done. With him being on a new Med for his dysautonomia the doctors wanted to make sure his heart was working properly as Danny has been very sleepy, has a low heart rate n Blood pressure, and has been very cold to the touch. I guess they wanted to make sure it was just the med reactions and not a heart issue too. The EKG has come back normal :) So now, sit and wait to see if his body will process the new med better. We've had to decrease the dosage once already.....which I do see his blue eyes more in doing that, BUT in turn he is having more "eposides". Sigh! Can't anything go easy?!?
By this time Gail and I are just loopy and ready to call it a day. Even though it ran smoothly our brains were was a LONG day.
We did go up and visit our Friend Karen. Please keep her daughter Kylee in your thoughts n prayers as she is fighting for her life. Everyday is a challenge for her and we can only hope n pray that things start to turn around so they can go home and be with their family, happy n healthy. Before we left we HAD to stop over in the cafe' to get Sundaes ..... yes ~ we HAD too, LOL.
Last night I had a Wildtree party here at the house. It's always a good time getting together with friends.....bonus there was drinks and food involved! I really love the Wildtree product, not only is is easy and tastes great, it's also healthier. I'm all for that :) If you are interested....
Go to this link.....Wildtree
Or you can contact my Sales Rep
Meghan Huss
Wildtree Representative

Friday, February 11, 2011

Striving Ahead

Is the cup half full or is it half empty? Neither are really wrong.....So I chose to teeter between both of these options. But it will NOT be empty!!
Obviously you can tell my "attitude" has changed. Not that my issues have gone away, just that I have had the SHOCK and the feeling of being overwhelmed subside. I always have alot on my plate, that's just how we roll. I have somewhat organized and processed everything in my head so now I can relax....somewhat as I know all too well how fast life can turn you upside down, in a blink of an eye.
With that being said there are many of Danny's lil friends sick in the hospital and a couple of them are fighting for their lives. I ask you keep them in your thoughts and prayers. Life can be so unfair. It's at times like this, when reality is right in your face, that you feel as if you hate this life. These innocent, precious, beautiful, strong kids have to fight so hard. . . . and then one day they may be gone. I just breaks my heart!
Danny remains Healthy (knock on wood). I might regret saying this/typing this, as Danny LOVES to throw things at me. BUT this is the BEST winter he's ever had! I believe it's because of the GREAT nursing , not only just the care he gets, but because I don't take him out everywhere all the time anymore. Danny used to be glued to my hip where ever I would go, he would go...and just because he was in wheelchair I didn't let that stop me from going anywhere and everywhere. We did start him on a new med for his Dysautonomia which unfortunately has snowed him so he's been mostly asleep then away the last few days. I am hoping in a week are so his body will have adjusted to the dosage and he'll be more awake. As it's so sad not to see those beautiful blue eyes.
OMG the Packers WON Super Bowl 45. What a nail bitter at the end, but they pulled though.
Danny getting ready for the BIG day.Ready!Well he needed a nap as the excitement was just overwhelming :)
Let's get ready to RUMBLE!WOW ~ how awesome!
I took Danny along with Avrianna's Girl Scout Field trip to one of the local Dentist offices. They all had a blast! What a great time I had just watching them.
Avrianna DDS, Heeheee
I had my first treatment of Tysarbi yesterday. It would be lie if I said I wasn't nervous. But everything went well. I had no issues with the port or reactions to the med. Now to sit and wait to see if it's going to work for me. This could be the start of a new beginning or the start of another end. Half full or half empty? Time will tell! This is what the IV access looks like when connected to my port. Looks like a bug, heehee
I am going to be taking Avrianna to an ALL STAR swim meet for kids 8 & under on Sunday. I can't wait, it should be a "fun" meet. I will let you know how she did. Last nite I got back on the "cool" mom list as I took her to the School Skate Nite at the local roller rink. WOW ~ she really hasn't been on skates a lot but she got that mastered and even managed to win at the skate Limbo.It has been brutally cold here. Today is the coldest day I believe at -24 with the wind chill. Seriously? What the heck am I doing here.......brrrrrrrrrrrrr. I am burning wood in the fireplace like a mad women. Dan then says well then you can't complain when I have to spend more time up north cutting more trees. LOL ~ I LOVE the wood burning fire cozy :)
Thanks again for stopping by to check on us.

Friday, February 4, 2011


So unfortunately the last couple days I've been ................. (you will have to pause the music at the bottom of the blog to here the video's on this post)

This is it ~ It says it ALL! Wednesday night it hit me and the emotions were just rolling on. The whole pity party, the ANGER, the sadness, the feeling of helplessness :( I'm not sure what the deal is, but I know what the triggers were/are. I don't have it all together all the time, I'm not perfect, and I don't know everything. I'm just a mom trying to do what is best for her children and herself, but the options are very difficult and unsettling. I had my cry, I picked myself up, brushed myself off, and now I'm ready to take what comes our way, but I can honestly's been a difficult road lately.
Danny was in an awesome mood all smiles and chatting up a storm, so you all know me....more video and pictures ~ Yeap TONS of them. You can't have enough in my opinion. Well as I'm videoing my Lil Man... in a good mood, not in pain, not repositioned, he out of the blue FLIPS OUT! GREAT :) ~ Ok let me explain that one. I think sometimes I feel as if my child LOVES to prove me wrong when I'm trying to tell the doctors he is having these "seizures" which are coming on more often, more intense and I'm not liking it. So I was "excited" to be able to catch it on film. He had the EEG with NO seizure on the what the heck is this?

I sent this video to his Pediatrician, Palliative Care doc, and Neurologist. To get their opinions.
I had an assumption in which I included in the email of what I thought it might be. Danny has already been diagnosis with DYSAUTONOMIA a couple of years ago so I was wondering if this is another phase of it. ~"Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of our bodies, including our cardiovascular system, gastrointestinal system, metabolic system and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. Dysautonomia conditions can range from mild to debilitating and, on rare occasions, can even be life threatening. Each dysautonomia case is unique and treatment must be individualized". Danny's symptoms so far are not able to stabilize his temps well, his lack of ability to urinate at times, not have a BM, his body flushing/blocthing/rash, B/P issues, GI shut down when put under, control is sodium levels. The Neurologist and Pediatrician both feel these "episodes" are indeed dysautonomia attacks, FIGHT OR FLIGHT. Also with all the other issues we've been seeing the last year I can say the light bulb has unfortunately turned on. Ever since Danny got so severely sick in '09 which required a 70 day stay in the hospital and the trache he has never been the same. So the theory is regressive dysautonomia. I don't have to tell you that doesn't sound good :( You know something is up when Dr K calls me at 7pm and the first words out of his mouth are "Don't freak out".......UM, NOW you have my attention. I was at a restaurant when he called so I'm sure to all I looked like a deer in the headlights. It didn't help that Danny was NOT doing well being "OUT". He was coughed up a storm and crying....he's been doing this alot when we take him out. Once we put him in the van BOOM he is a Prince and himself........another symptom of this dysautonomia rearing it's ugly head (anxiety). Once I/we (his "girls") started to put ALL the pieces together it was like someone hit a switch. Which is good, but terrible at the same time. To know his own body is "freaking" out or "shutting" down just because and not knowing if it will reset itself..... is very difficult to swallow. SO once again I sat and cried my heart out. It just HURTS. Saying I'm sorry to my sweet lil boy will NOT make him OK, he will NEVER be "OK". If only I could turn back the clock and be able to save my son....make him safe. Now comes the gut wrenching decisions on how, what, and if to treat this horrible disorder. No stress levels are NOT high!
Danny is my HERO and my Strength as long as he continues to FIGHT I will continue to FIGHT for HIM.
Look at this smile and hear his voice ..... Tell me he doesn't make you just melt.

On another sad note ~ Danny's PT whom Danny has had since day 1 with the school system. Is moving on to Big n Better things. We will MISS you PT Dan !! Here is the collage page I did for PT Dan's memory book :)Danny with PT in the hot tub doing Warm water therapy. They BOTH enjoy hot tub time.Want to stress out my Dad.........Look what my Mom did?
Don't worry it's just a sticker :)
For me......I'm just waiting for the stress to drive my dysautonomia (MS) out of whack. I've been trying to be not stressed out, but come one.......Really? Can I do that now? I've been calling everyday now for 4 days to see what the hell is going on with starting my new med treatment. I've been approved, my blood work is done, the port is in, and still not answers! Grrrrrrrrrrrrrrrrrr
Sorry for just downer kind of post but this is our life right now. Got a love it, NEVER EVER and dull moment. Thanks for the kind words and support!