Saturday, January 31, 2009

Senior Moment

This evening I gave Danny and hair cut, bath, and a new G-tube. But I have realized that after a long day NOT to take on too much in the evening as the Senior Moments happen.....hence to "new" hair do (ok Erin can you fix this one, LOL)

This is what happens when you are trimming his neck line and then forgetting to put the attachment BACK ON when cutting the hair, argh! As I'm cussing myself out Danny is laughing, figures. If it wasn't so darn cold out (but we hit 35 today, this is the first day in 34 days to hit above's a heat wave, NOT) I'd shave the whole back and let it grow in together. THANK GOD it happened in the back of his head and no one will really know (except me!). Of course I have an artist coming over on Monday to take close up shots of the kids for life like statues I'm having made of them for in the new house. It's a good thing it's in the sorry buddy. As you can see even after the hair cut his hair is still very thick (except in that spot) and wavy so I'm hoping it will camouflage it more. I'm so glad the bath and the new G-tube (I replace his every 3 months) went better then the hair cut. It's not that I did anything really tiring today but I did get alot done.

I had a visit with another mother in the Valley that has a special needs child and two "normal" children. She was here for a good part of the afternoon and it was GREAT! So nice to talk to others that "get it" and be able to share our son's milestones ie: holding a head up for a few seconds, no seizures, hitting a switch to activate a toy. You don't know how many times I can tell someone that Danny held his head up for 10 seconds by himself.....and then get the look as if yeah he's five and it was just 10 seconds. They don't get it!!! She too is building a new home so we shared ideas about the accessibility for our boys(yes our current home is still for sale, check out the link to the left in Our Stories for info). It was wonderful to see how they interact together. Another bond and friendship I hope to continue for many years to come. Thanks again for coming over.

After they left I finished making the Superbowl goodies. It's just going to be us but thought it would be nice to have our own mini Superbowl party. We are not BIG football fans but you have to watch the Superbowl for the commercials, right? Tomorrow morning Danny and I are going to take a ride to the new house and take some pictures of the progress there, then off to my aunt's house for lunch. There we are having a birthday party for my niece and mom (aka Nanny). Dan and Avrianna should be home before the kick off .... if not more for me to eat, heehee. I made taco dip, ham rolls, beer bread and spinach dip, subs, and I have strawberries, kiwi, & blueberries so Avrianna will be totally excited about that....she is a fruit fly!

I am also going to surprise Avrianna when she gets home ..... I signed her up for Gymnastics again once we get back down to Florida....she is going to flip, REALLY. I took her out of Gymnastics last year because of her spleen being enlarged and with her on the bars, climbing ropes and such I knew that we were farting around with now that her spleen is out and that she has ALL this EXTRA energy, Go Baby GO!

Have a great Superbowl Day and be Safe! Take care

Friday, January 30, 2009

PT, Xrays, & Shopping ~ 3rd Post of Day

What a day Danny had. Here's Mr Dan (PT) and Danny. Notice anything......Danny is holding his head up all by himself and sitting with a smile on his face, no tears, YIPPEE! He did so well with Mr Dan today as he was alert, smiling, and vocalizing the whole time. Sorry Ms Kristi, LOL. Mr Dan is impressed with the how well Danny can bend is leg this week. He said Danny has gained about 30 degrees of range in his right leg, Way to go MOM, I guess I am stretching him right. :0) We did find out that his right leg continues to be shorter then the left by about 1.5". Mr Dan even said we can try to put Danny up in the stander next week, OMG ~ I didn't think he'd use that till this spring or even summer. I am so excited that he is going to be up once again. I hope it's not painful, cross your fingers!
Awe, Isn't this sweet. Danny's holding his own hands....He's NEVER done that before
Here Danny is talking to Mr Dan at the end of therapyI took some pictures of his xrays so you all could SEE what I'm talking about. Here's my lil man. These pictures show the scoliosis of his back, the ITB pump & Catheter, and his new leg hardware. They took the xray with the brace on so the dots and buckle are from the brace THAT is NOT internal. His scoliosis bend is about 50 degrees to the right and the kypho bend (which means the spine bends forward) we did get a new angle of so we'll have to get that this spring.I changed the contrast to black on white....kinda coolThis picture shows the catheter really well and how it attaches to the pump then coils internally around and runs up his spine. The catheter was suppose to be in the base of his neck but it wasn't properly anchored and it has now migrated to his mid back, argh.These show his hip IN THE SOCKET when his legs are frogged and straight, YEAH!!! The plate on his leg is holding the leg together where they cut it...then the piece they cut was graphed up in his hip socket to make is bigger(up by the puck). I like these ones cuz you can really see the computer stuff inside the puck...modern technology, it's amazing!After therapy I took Danny out shopping with me. We went to go look at Stain glass that I am ordering for the new house. Danny loved being in that store....all the colors. Plus they had this Yellow parrot that kept squawking and Danny seems to love it. After that we went to visit his Nanny at her work. So he got ALOT of attention by all the women there...yeap he sucked it in. I had some stuff to drop off at GW (Goodwill) cuz this morning I cleaned out my closet and I FINALLY got rid of all those bigger clothes. Then we went shopping at Walmart to get some odd n ends, Birthday presents for my Niece and Mom, and Superbowl yummies. Danny sat in his chair like this for just over 3 hours and was in a great mood. He hasn't sat up in this position for that long EVER. YEA! He is usually very reclined. Things are working in the right direction!!!! Well time for night meds and then Danny and I have a date snuggling watching a movie.... Titanic! Thanks for following our story. Stay warm! Tomorrow is suppose to be a heat wave with mid 20's, but it's suppose to snow rain...will this weather ever get better. Please sign out guestbook or make a comment to let us know you stopped by.

Handsome Dude! ~ 2nd post of Day

Here's my lil man today....He was thinking of Avrianna and thought this shirt is appropriate as she is gone to Papa & Claudia's for the weekend. Have FUN sis! He's so Sassy....but handsome! Got to love him. Today he has Mr Dan (PT) coming to play with him so I'll post some more pictures of them together too :) Stay warm.....Is it EVER going to warm up????? This -20's is for the Eskimos and I'm NOT an Eskimo!

Occupational Therapy

Yesterday Ms Kristi (OT) came out to play with Danny and of course she got the same old same old from Danny.....NOTHING! For whatever reason he chooses NOT to participate with Ms Kristi on a normal basis. I know he has sensory issues but I would think it would be fun to play with the stuff she brings out, I guess his fun and our fun are two different things. Here's Ms Kristi ... she even brought out water...he LOVES water! For a moment here I thought just maybe he was going to play with her but then....He turns his head and TUNES her SASSY!!!Or he'll try this one during her time! ARGH boys!!

We have a running joke that it must be Thursday' the other therapies are at the same time of day just different days and he does fine with them. So it's not the's got to be the day,lol. Next week we have a dental appt on Thursday during Ms Kristi's time so maybe we can fake him out and have her come a different day...then we'll see what he does, heehee.

On a more serious note: I caught rumor that Danny's previous OT from Birth to Three was called to serve her county over seas. We'll be thinking of you Ms Becky! Stay safe and we are hoping for a speedy return back to your lil boy and family.

Dan and Avrianna went back up to Tomahawk early this morning (6:30am early), so once again a VERY quiet house. I'm thinking if the weather is nicer Danny and I will attempt to venture out (to the grocery story, for Super bowl snackies) for new change of pace. Avrianna is NOT a morning person so to wake her up and get her out the door was a challenge. With tears flowing she left....she didn't want to leave me and Danny, how sweet. But I informed her that in 2 weeks we'll be in Florida together and it'll be JUST us for 2.5 months so she'll be with with us enough. So I told her and encouraged her to GO and spend time with her Daddy, Papa & Claudia. She would rather sit around the house with me and go out the grocery store for fun, then to go ice skating and sledding, NOT! I think she was just an emotional wreck from being woken up. Well hope you are having fun Avrianna!!! Danny and I are doing just fine :o) I will update and take picture more often so Avrianna can check out her Brother. She is an AWESOME big sister!! We Love you Avrianna!

Wednesday, January 28, 2009

Speech Therapy

It was a good day!! Didn't get the full smile but there was one. Mr. Scott brought out "fun" stuff for Danny.... they played in snow which Danny definitely had a reaction to, he brought his hand up and pulled away, YAY, Purposeful movement! Then Danny played with Play Doh and really liked that, really really liked that. We switched to Floam but that wasn't too hot in Danny's world. It's great to be able to see Danny's reactions to things. Then Shaving cream, WOOHOO! Danny enjoyed that too and then he smelt like a manly man for the rest of the day, SNIFFFFFF!Finally I have some pics of Ms. Maria and Mr. Scott. Here they are during Danny's therapy yesterday. Danny did very well with them. He even talked to them, Yahoo!! Way to go buddy, talking to the speech therapist even, not a common thing for him. I did get a video of Mr. Scott and Ms. Maria singing to Danny, Frosty the Snowman, but I'll spare them is so cute though! The principle came out to to observe the visit and Danny really seemed to notice that there was someone NEW in the house so he was all resevered but then when Danny realized it was a guy he warmed up alil. I say he's sick of his mom and likes more guy interaction. All that testosterone, ya know, LOL.
Here they are reading him a story....Did you notice.....wait for it...wait for it.......He's BACK IN HIS CHAIR, YAHOO. I can get him up and out of bed!!!!!Do you see the smile.....On Danny!! He's playing with the Play Doh and with Mr. Scott.Here she is......the face......"Really I have to have my picture taken"! Thanks Ms. Maria, we Love You. You would have never known she broke her nose two weeks ago, except for it happened in my driveway, doh! She looks great! We're glad you're back!Ms. Maria brought out a Mac computer that has programs in there for Danny. He Loved them! Dan was even in amazement with how excited Danny was to play with it. Boy does this open a whole NEW door for Danny's communication. Thanks to you guys in Florida for jump starting the process.....I'm one happy Momma!!!! Now that both places are working towards this's wonderful. Here is Danny reading a book to Avrianna, WOOHOO!
Here is Avrianna and Tyler playing this weekend....they played so well together!

I love this picture...the colors! I bought them these T-shirts last week when Danny and I were in Milwaukee at Children's. Here are my babies!!

Tuesday, January 27, 2009

25 Random Things about Me ~ 2nd Post of Day

I did this fun activity on Facebook and thought I would share!

1. Touching bare wood makes my teeth grind like finger nails down a chalk board
2. I still have a nasty habit of chewing my nails...Do as I say not as I do, lol.
3. Sean Connery's voice is AMAZING!
4. Who drinks wine by the bottle now when it comes in a box
5. I absolutely LOVE being a mother
6. My life as I knew it changed forever the day my son Danny was born, I love you buddy!
7. I swear I have OCD - I'm anal at trying to make EVERYTHING right
8. I'm adictted to FB it's so great getting back in touch with old friends and staying in touch with new ones.
9. Would LOVE to drop another 10lbs, but not sure how to do it.
10. I love telling medical staff my new statement.. I'm not out to make friends here I'm here to make my child well so DO YOUR JOB. Yeah I'm shy, NOT!
11. Telling a mother of a special needs child "You're a great advocate for your child"...Is just a nice way of saying you're a Royal Bit*$, lol.
12.I don't like the beach...sand in a wheelchair is a mess,swimming in water that has something that could eat me freaks me out,
13. I can't wait till we can adopt another child...some say I'm NUTS, but never really know now do you
14. I could be a RN (not by choice) with all the training for my kids
15. Chocolate covered Strawberries are a HUGE weakness
16. I'm scared to death that my son is going to pass away, but most of all.....what will happen to him if I go first.
17. I met my husband when we worked together and couldn't STAND HIM at first
18. Always said I would never date someone younger, shorter, or with red hair and found my husband is all would have thought, lol
19. Looking back on the nights I could sleep uninterupted and MISS them terribly
20. Find myself feeling jealious when I see children my son's age or younger that can do more then he.
21. Thrive on giving my children EVERY opportunity possilbe for them to be ALL they can be
22. Actually I am used to driving my full size van (the bus), heehee, even though I bucked having to drive it.....Where's my Mustang, lol
23. Really looking forward to my postponed (16 year) class reunion this summer
24. Feel soory for the guy that marries my daughter....I've created an independent drama queen, lol
25. Life is NOT measured by the breathes we take, but by the MOMENTS that take your breath away. LIVE LAUGH NEVER know what tomorrow is going to bring

Give it a try it's kind of fun!!

Who Is Your Role Model??? ~ 1st Post of Day

Found this fun thing to do! Enjoy
Step #1. Pick your favorite number between 1-9
Step #2. Multiply that number by 3
Step #3. Add 3 to that number
Step #4.Multiply that number by 3.
Step #5. Add the digits together (Example if your number is 45 you would add 4+5=9, your final number is 9). So what is your number??
Now Scroll down .............Now with that number see who your ROLE MODEL is from the list below:
1. Albert Einstein
2. Nelson Mandela
3. Abraham Lincoln
4. Helen Keller
5. Bill Gates
6. Mahatma Gandhi
7. Thomas Edison
8.Winston Churchill
9. Lori Osero
10.Franklin D. Roosevelt
I know, it's crazy but I just have that effect on people....I can't help it, I was born this way.

Play Dates

Wow what a busy day yesterday was.....for Avrianna. I love it when play dates are here, they keep her busy so she's not stuck up my behind for "things" to do. My nephew ended up spending the night Sunday (he didn't have school yesterday) and played with Avrianna ALL day yesterday, YAHOO! It was great...people think I'm nuts to have more kids around, but I love it! The more the merrier. Then in the afternoon a friend of mine came over with her 3, bring them on. The older kids were down stairs having a blast and we had the younger ones upstairs with us. Her daughter Maggie is such a hoot...I forgot what it like around the house when an infant can walk. She's on the go and VERY fast she keep me on my toes, lol. It was great to see Jack again (his website link is to the left) too. I'm just amazed at what he can do and what he acknowledged, Way to GO Jack!! It was great to have some adult conversation, Yay some normalcy around here. So to add it up I had 6 kids here at once and LOVED every minute of it.
Danny thinks he needs to get up at the crack of even earlier to chit chat and then falls asleep when the rest of the house is getting up. So I'm looking forward to sleeping through the night.......ONE of these nights, lol. He is doing so well. I didn't need to wean him out of the brace and he is tolerating MY therapy more and more, yahoo. I am going to call today to see if I can get more PT for him going...better to stretch him more after surgery!!
Did I tell you how much I HATE winter!! This cold weather just has to stop. Once again in the -20's and I'm NOT liking it, not one bit. My skin is looking like an albino lizard, Florida here we come. We have the count down up on our calendar and 18 days can NOT come soon enough. Well I need to get the kids in the shower and get stuff accomplished (I've been addicted to facebook lately so haven't done anything yet this morning but putzing on there) before my meeting on the new house at 12 and then Danny's therapy at 2:15 with Ms Maria and Mr Scott. Yeap this is the first therapy since Ms Maria's fall so we'll have see how the broken nose is doing....we MISSED you Ms Maria. I am hoping Danny will nap through the morning and will be ready in the afternoon for them. Today the Principle of the school is coming out too to check out the home bound setting and how it's working....told Danny it's not good that at age 5 that the principle wants to see you already, heeehee.
Have a great day! Take care and stay WARM!! Our current house is still for sale and the link to the info and pictures on it is to the left in "Our Stories" , check it out if interested. Please sign our guestbook or make a comment to let us know you stopped by!

Sunday, January 25, 2009

So Happy Video

Can you tell he is a Clean and HAPPY boy? Totally love this!

Avrianna is ecstatic cuz her cousin Tyler came over the play with her today and he brought over more fish for her fish bowl. Way to redeem yourself Auntie Brenda, lol. She now how 7 in her red fish bowl, WOW. Let's see how many make it the next 24 hours, heehee.

Friday, January 23, 2009

A New Man

I'm simply amazed on how well today has gone, so far. Danny got his bath with no tear or whimpering, yahoo! The first issue was trying to get his butt up to put a new diaper on. I didn't want to pull up on his leg, but I figured out a way and he did VERY well. I even got....yeap a smile, he's my hero!
Here is the finished "product". I was given a CD with all Danny's previous to now xrays of his hip and spine to give to Dr Kasper. Unfortuntely I don't have the program in my computer to open it so I can't show his therapists or Dan, but the hardware that my lil man has now, WOW! This is a side view of his right leg and where his incisions are. They really look good!

Look PANTS!!!! YAY! It's the simply things, LOL.Clean boy, clean sheets, A NEW MAN! He wasn't too happy with the position he was in, Can yo tell?

He was crying when Mr Dan (PT) got here as I changed his diaper before therapy and I must have moved something wrong, sigh. I hate that fact that I "hurt" him. This is were the mommy/therapist line gets crossed. I am all hands on and do EVERYTHING for him but I would rather do the extensive stretching when the therapist is here. Let them be the bad guys..I will stretch him like I'm suppose to but not to the point where he is aggitated. I'll let Mr Dan be the meany for awhile, heehee. Right now he is "sitting up" in bed and I am monitoring his blood pressure closely to make sure he doesn't have issues being up right more, like passing out. He is doing well but is very tired with all of today's activities. OMG ~ did Danny do AWESOME with Mr Dan....He applied pressure to the hip, ranged him and Danny was OK with it. I haven't touched that leg since surgery so things are tight but I was amazed on how well Danny did when his hip was rotated, not one tear. The worst for Danny is the stretching right now not the hip as his right leg muscles are way too tight, yeap we got a few pouty weird, I was scared to death of moving the hip not the leg and it's the complete opposite. Of course prove me wrong Danny!!!!

I'm going to try (key word = try) to put his wheelchair back together. They had to take off alot of pieces to get Danny to fit in it when he was in his brace. I think I know how to put it back together, wish me luck. I have an appt scheduled on Monday for them to come out and put it back together but I don't like to wait (for all you that know me, heehee). So I'll attempt it and if I can't figure it out, I at least know they will be out here on Monday, lol. Dan if you're reading this, don't worry I'll put your tools back where I got them from!! Not sure if Dan and Avrianna will be back tonight or tomorrow so I have a few hours at least left of this quiet time.


Ok I am so NOT used to all this quiet. Dan, Avrianna and the dog went up North to Tomahawk on Wednesday to hang out with Papa & Claudia. So since I've been home I don't know what to do with myself it's so peaceful. Which takes me TOTALLY out of my element, lol. Can't believe I'm complaining about peace. Today I'm going to get lil man in the tub....he NEEDS it. Get that surgery stink and sweat smell off him :) I didn't want to push my luck with him last night so we are doing this in baby steps. Took him out of the brace and got a let him be last night. This morning I'll give him a bath. Then this afternoon his first PT, YAY! I'm sure Danny isn't going to think that but it will be good to get him stretched again and back to his routine. I'll post later and let you know how things went today.

Thursday, January 22, 2009

Gold Star!

WOW ~ what a busy two days that has been, but we got it all done!! So to recap for you all :
This is how I got him around with his brace on...he was so LONG, but comfy. I had to have him reclined all the way to get him to fit and then I put him in a sleeping bag so his leg didn't get cold with NO pants on, lol. We did it! He ended up in the chair for both days just about all day long and he was so GOOD!
Our first appt was GI at 11:50 in Milwaukee -
He defiantly is a BIG boy...and they are concerned with his weight still 54lbs. A dietitian had come into talk with us about his feedings. We didn't see eye to eye so I just referred her to talk with the new dietitian we are following and have our dietitian get back to us on any changes they felt needed. First she wanted to cut 2 more oz of formula out of his diet.....Danny takes only 16oz (that is less then a can and half of soda) a day worth of formula. He has an intake of 20mg per kilo (I know too much info) of calories with the amount where a "regular" child needs about 80mg per kilo for just a maintenance. I know Danny's is teetering dangerously with the amount (or lack there of) formula and she wanted to decrease it, NO WAY! Obviously Danny isn't gaining weight due to calories but because of some his "global issues" (I hate it when people use that,lol). Then she wanted to take out his liquid multi vitamin for a "Complete" vitamin like Flintstones but I'm not sure we are going to do that either as the "Complete" has Iron in it (Danny's iron levels were through the roof, so he doesn't need anymore of that) and Selenium which we just increased already so adding more might "boil" the pot over. I need to do some more research and check with Dr Kasper on that one. She did have one good point and that was too add Calcium to his diet....not only is he lacking, but due to the precocious puberty his bones need all the help that they can get as they could get brittle. The G-tube site is looking great and we still have some time before Danny needs to have surgery to have it repositioned lower, YAY! So we'll see the GI doc in 6 months.
From GI we went to get his ortho X-rays that were suppose to be scheduled, and of course they weren't. Thankfully the ladies made an exception and got Danny in. Once in the xray room and Danny was on the table they ask ME about the brace, like I know! No one knew if it could or should come off for the me crazy but isn't that why we were down there to do xrays to see if the hip healed so the brace could come off? Some times I wonder, OK MOST of the time I wonder. So they did xrays with the brace on until someone got ahold of the doc and he said nope the brace is suppose to be OFF for the xrays. So we took it off. Danny was in some discomfort at first but seemed to do pretty good. When xrays were done I asked if we should put the brace back on as we weren't seeing the doctor till the next day and they all looked at each other and said I'm not sure, What do you think? Are you kidding me? I put the brace on and we went on to his next appt.
The Endocrine doc....she was a wealth of knowledge....I love knowledge, they can never tell me too much as I am a need to know kind of mom! They told me that yes he is indeed in puberty, which I knew already. They sent us down to lab (only 1 attempt) for more blood test to rule in or out some issues with him going into puberty... is it due to the amount and location of his brain damage or is their some underlying issues too. Then she sent us to have a bone age xray done. This tells you not chronologically how old you are but how old you are by your bone growth. This xray had shown that my 5 year old son is about the same bone grwoth as an 8 year old. Then add the puberty age....which he is at about a 12 year old, head is spinning and it's only the first day, lol. What happened to my 5 year old lil boy? This growing up so fast phrase....well Danny's is taking it to new levels, oh my. We should have the test results back in about 2 weeks.
Unfortunately the Ronald McDonald House was full so Danny and I had to get a hotel room, but it wasn't too bad as it was relatively close to the hospital. We got in and ready for bed right away, then watched movies till 11 last night. Just me and him snuggling :)
Crazy day = Today
First appt of the day was at 9am in the clinic building with ENT. Great reports there! He does still have excess fluid in his right ear (the doc took this vacuum to it to get all the gook out) so I need to keep up with the ear drops a few more days. He said see you in 4-6 month, YAY!
Then we were off to the other side of town to another clinic building with the ortho doc by 10:15. We made it with time to spare. The hip is alot better, whoo, and the ball in now in the socket, woohoo!!!!!! The brace can come off. I was interested in seeing all the new hardware that was installed. He has one plate and about 6 screws holding his right leg together and then the bone graph on the right hip socket. Wow it just amazing me what they can do. I left the brace on for the rest of today till we got home. One kind of weird thing is that both of the incisions this time are: blistering, cauliflowering, or the correct term - Keloid. Which is weird as if you have the trait of keliod scars normally you always do but Danny has never had this issue before but now BOTH incisions from this last surgery are doing it. Once again an enigma??
After this appt we were back on the road to be back to the clinic building by 11:30. I know give me a challenge....3 appt in 3 hours at two different places....We made it!!! And they thought it couldn't be done. With time to spare once again =) Danny's next appt was with Hematology. Just when we can write this specialty off from Avrianna, Danny needs one. Well we did alot of talking and the though was the issues were a flook due to the surgery and his body being stressed so they sent us back down to lab (only 2 attempts) for more blood work to rule out the "off" labs during his hospital stay. Well I was called on the way home that the blood work today was also off so they are doing more tests to see why or what's going on. His PTT level (rate that his blood clots) was still delayed. Which means he can bleed more. I will have those results back next week some time.
From there we had to walk across the hallway to his last appt, Pulmnology, YAY! The doc says Danny looks great and a big kudos to mom for making sure Danny didn't get any respiratory crap will being laid up, big smile. They checked to make sure his Bipap was still working properly and they commented on my engineered mask/head gear that I made for Danny. The ones out on the market just dont work for Danny so I took 3 different one to make Danny's. I pulled out all my tricks to make this work for him as his next step was a trach and I was in no way going to give into that yet.
Well here he is at home and can you see what missing?He did awesome when I took him out of the brace. No cries or whimpers. He did have a frazzled look but then.... here it Danny SMILE :)

I'm sure he still has a long road ahead of him, but he's such a good trooper. A GOLD STAR for my lil man. Thanks for following our journey! Please sign our guestbook or write in our comments to let Danny know you stopped by.

Tuesday, January 20, 2009

Heading to Milwaukee

Where did the day go?? I am trying to get everything set, as tomorrow Danny & I will be leaving in the am to the Children's Hospital for 2 days worth of follow up appts., sigh! But the brace should be able to come off on Thursday, YAY!! So much left to do and not enough hours in the day. With Danny I have to bring EVERYTHING along with so it looks like I'm staying 2 weeks not just 2 days, ugh! Well just wanted to stop by and say HI, I'll post when I can or definatly when I get back. You know me...I have to blog, LOL. Take care! I am so glad the weather is going to hold off and be fair for our travels.

Monday, January 19, 2009

Holy Kringla!

Speckles didn't make it through the night, very sad :( . So we fished (no pun intended) him out of the bowl and put him in the freezer with the receipt and we'll exchange him next time we are out. Not too bad 1 out of the 4 fish died (so far, LOL).
This morning we had 3 different meetings with contractors working on the house. We were very busy this morning, but got alot accomplished!! I'm getting more and more excited to see the house completed.
Then this afternoon we made Kringla. This is a tradition I started 5 years ago. It is a Norwegian cookie that Dan's relatives used to make when he was a lil lad, heehee. I started with an old recipe and after many blah batches of cookies I've finally tweaked it to a very tasty treat, yum. Now everyone asks me to make this things or for me to give them MY recipe. I only make them twice a year, so that way we don't get sick of them. Here is my lil helper, isn't she adorable!!

Thanks for following our journey's. Take care!

Sunday, January 18, 2009

Sledding & Fish

Just wanted to share some pictures of Avrianna sledding. She and I went to the park to go sledding and we were out there for over 2 hours today, I can't believe it myself. The weather was great and there wasn't too many kids on the hill, much to my surprise. We had a great time together and afterward we went to my Dad's to warm up. Laurie played games with Avrianna and we had homemade hot chocolate. It hit the spot!Having a great time running up the hill ~ NOT!! She is going to sleep well tonight, heehee

All pooped out and ready to go in and get warm!

After we warmed up we ran to the store to pick up a few things and to get some fish, FINALLY. My sister gave Avrianna this red tank for Christmas but never brought out some fish so we went today and picked out 3 for the tank (all some sort of goldfish) named: Shadow, Speckles, and Swimmy. She is SO EXCITED to have some fish....I hope they live!And another beta as our last Florida trip our old one of 3 years died (very sad) this one is named ZAK!
I even got Danny out of his bed for a breif moment today and put him on the couch. Dan had to retrieve to remote that fell down and under Danny's bed. I got this smile, LOL. I'm so glad he is doing so well.


This is what I woke up to this morning....a ton of Turkeys in my driveway and the road. There were 2 Toms and the rest were female. Another bonus for the selling of our house (check out the info on the house click on the link to the left in Our stories), wildlife! We also have a 12 point buck that hangs around the back yard in the farmers field.
Danny was up bright and early this morning..around 5am. He is still junky and coughing alot now but stats are still doing well.
I'm thinking about taking Avrianna to Washington Park today and going sledding down the big hill there. As the weather isn't suppose to be TOO cold today.

Saturday, January 17, 2009

Nice Day

Well despite the way the morning turned out it was a nice day. This morning when I woke up in the early am and I heard an unknown noise coming from Danny's video monitor that is at my bedside, so I checked it out. He was making a gurgling bubbly noise while he was sleeping when the Bipap blew in for his inhale (he tends to make this noise when congested) which I've heard before so thought nothing of it .... I checked the pulse ox his stats & heart rate were fine so I went back to bed. Once I got up for the day I hung his bipap tubing and nasal cannula up when water started dripping out of the tubing, OMG it was blowing water directly into his nose last night. Danny stats still are great but can't help but wonder how much blew into his lungs, ARGH!! Danny was still congested last night and the pulmonary doc always said I could increase the heat to the water reservoir warming the water producing more humidity. Well that I guess it also makes more water in the lines?? I won't be warming the water any more, that's just scary. It could have drown him, NOT cool. Danny has been great all day so crossing my fingers that he continues. Danny got to bond with his Daddy for most of the day as Avrianna and I were gone. So I'm sure Danny was jamming out the Stevie Nicks, The Outlaws, and Bruce Springstein watching his daddy dance around the living room like a crazy man. LOL! Danny just enjoys it when something...anything is going on around him. He is such a busy body, I don't know where he gets that from, heehee.
Avrianna went to her first Sibshop activity and she absolutely loved it. This is a program for the sibling (age 6+) of a special needs child. A place where they can play, talk, and be involved with peers that are going through some of the same things. As being a sibling to a special needs child has got to be some hard shoes to fill....I can only imagine! She herself having a disorder but then having to deal with her brothers lifestyle too. Avrianna is my inspiration and my role model, she ROCKS. What a wonderful, compassionate, lil lady she is becoming.
While she was there I went out with Connie , her kids were at the sibshop too and Joe was bonding with Grif. Girls afternoon out, YAY! We went out for lunch, did some shopping, and we were able to have an adult conversation without ANY distractions. Oh My, it was wonderful! To hang out without kids and enjoy our time out alone. It snowed outside the whole time, but we didn't care, it was pretty and peaceful.
Avrianna is being our waitress is so cute! We are going to bake some cookies together soon so better wrap things up. Danny's hanging out in bed, like always. He is enjoying the last few days in his brace (lil sarcasm here), lol, as there are 5 days left. I am very nervous and excited for the brace to come off. My thought is it's going to be freeing but very painful! He cries and tremors when I just lift is leg up slightly to change the pads so I can only imagine what kind of discomfort he is going to be in after the support is gone. It's amazing how you can dislike something so much but still like having it around. I'm afraid of it being off and what kind of pain Danny is going to feel. So far this recovery has gone well but I have this voice telling me things are really going to start to get exciting around here once that brace is off. Any words of wisdom from you hip surgery veterans it would be great!! I just don't want to hurt him, I'm scared to death.
Take care! It is finally going to start to warm up around here....we are going to get to the 30's WOOHOO! Let's get the shorts out, NOT! It's going to be 70 degrees warmer tomorrow then yesterday was, can you believe that. WOW!
Please continue to keep Zachary and Cameron in your thoughts as they both still have a long road ahead of them. You can follow their stories they are to the left.

Thursday, January 15, 2009

1 week from TODAY!

I am amazed how fast the six weeks went....well at least for myself, for Danny it might have been a different story. Next week Thursday he is free from his brace, YAY!! Dan and I were recapping the recovery and it went so well, as I had anticipated the worst. Danny's recoveries in the past have tended to swing towards the worst rather then OK. So I am pleasantly surprised! Thursday night when we get home Danny has a date with the tub.........and he is going to soak soak soak to get the sweaty surgery stink off of him. The sponge bathes just don't do the trick. I am going to leave his bed in the living room as that too has turned into a good change. It is so nice to have Danny comfy and part of the family ALL THE TIME! Laying him on a couch just doesn't do the trick either plus when I lay him on the couch he consumes the whole thing now..he just doesn't listen when I tell him to STOP GROWING, LOL! Yesterday and last night Danny started to get VERY the point where he was crackling when he took a breath. I am not excited about that, but his oxygen stats are good right now and I have ALL the equipment to intervene if he should get worse. He had once apnea episode during his nap yesterday but if was brief. Today he seems better but I will be watching him close today. I contribute alot of the junkiness to him laying down all day.
I haven't heard how Ms Maria is doing since her fall, but might call her today. With a broken nose I'm sure she isn't feeling GREAT! We are thinking of you Ms Maria!
With school being closed today (we are already at -41, OMG) Danny isn't going to have therapy today either. Boy therapy just isn't working out for lil man this year, I hope this isn't going to be the way the rest of the year goes, ugh! Guess he is just stuck with me, LOL. I am going to give him a sponge bath today and really stretch him out, so I'm sure he will take a nap this afternoon. Avrianna still has her school today......snow/cold days don't effect her, heehee. I know I'm mean!
Cameron and Zachary are still in the hospital so please continue to pray and check out their sites. Thanks for following our story! Stay warm today! If interested check out our current house that is for sale (link also to the left). Please sign our guestbook or make a comment and let us know you stopped by.

Wednesday, January 14, 2009

Zachary Needs Prayers!

Just a quick but IMPORTANT post.....please click on Zachary's site to the left in sites I follow...he was brought into the hospital and is having a VERY HARD time. Please send prayers...they are VERY MUCH needed.

Tuesday, January 13, 2009

ER visit ~ 2nd post of the Day

Yes I was at the Theda Clark Hospital ER today, not for any of my family members (per say) but for my extended family......Danny's Speech therapist! OH NO!! What we do for fun around here, LOL, NOT! Ms Maria slipped in our driveway when she got here and instead of catching herself with her body, arms, hands, hip, anything else then what she did..........HER NOSE! Yeap her face took the hit and broke right there in the driveway. I feel terrible!! She came into the house for just enough time to regroup and then I took her to the ER as she had a pretty large cut down her nose and it was evident it was broken as it was swelling and bruising right before my eyes, YIKES!! Danny hopes you are feeling better soon Ms Maria and Avrianna really hopes you are OK. Please let us know how you are doing! If I was smart enough I would have grabbed the camera and took a picture to post but I didn't get one, you're safe Ms Maria, LOL. Since Danny's been back on the schedule with therapy he hasn't done so well with it as things just seem to happen on therapy day.

I got a ride home as I drove Ms Maria to the ER and to her house in her vehicle. When I got home Avrianna was eating and ready to go to her Theatre a new outfit......FYI don't let the pages of those cool Explosion books from crayola (the black pages that turn funky colors with the special marker) get wet. I guess Avrianna did and then the pages bled all over her. Dan said she looked like a Smurf (remember them). He got her all cleaned up and ready to go so no worries. She is so excited for Theatre class as at the end of the session they are doing a play. I can't wait to see her....she is such a drama queen. This is what happens when a 6 year old girl gets bored.......Our family dog Bailey

Take care and stay warm! Now I hear negative 25 without the windchill on Thursday. Yeah, now my long hair is gone, NUTS I know, but it's only hair it'll grow back. Much to my surprise though Dan informed me he REALLY LIKES my hair this way and maybe I shouldn't grow it out, WHAT? Total surprise to me as he LOVED the long hair look. Good work, Erin!! Works for me, I just go with the flow.
Check out Cameron's site his brain surgery went well and on the road to his 2nd surgery in a few days. We're thinking of you Buddy!

Locks Of Love


Well here is the NEW DO! 10" donated to the Locks of Love foundation. Hair cut in honor/memory of all the fallen angles: ^earned wings^
^Feb 08^ Liliana Walters
^Dec 07^ Chase Stadler
^June 08^Jayden Hixenbaugh
^Sept 08^ Lilie Clark
^Dec 08^ Declan Kelly
^Nov 08^ Reese Kostjuk
You all will be missed! I never got to meet most of you in person, but you've each touched my heart in ways that words can NOT express. You all are my inspiration!!