:)

Avrianna's wall of Ribbons..... I'm so proud of my baby girl! Way to GO Girl! She's only gone to 4 swim meets and look at all of her ribbons :) She has one more meet in Clintonville before the season is over. I think this will be the last meet till Fall, but who knows she might want to do the summer season too.
Here's Danny's ambition level after PT Peter's work out this morning, heehee. Danny did wonderful and tolerated alot more then I thought he would :) He sat upright 90 degrees, laid flat on his tummy, moved his head to the left (elective), and not to mention all the stretching. I guess he's entitled to a nap. WAY TO GO, Lil Man..... shhhhhhhhhhh :)My lil chatter box! My biggest fear of having the trache done this summer was that I would no longer be able to hear that beautiful voice Danny has. Well he LOVES to prove his mother wrong.....listen to this music to your hears. I LOVE this boy so MUCH!!!!!!


Danny and I have another trip down to Milwaukee this week. A fun filled day of appts.....Ortho, Urology, and rehab to have his pump refill. I see the weather is suppose to cooperate for the drive down, whooohooo.

Playing around

Foxy is a new friend that has found our yard to be it's play area. I've seen him the last two days walking in our backyard. Well this morning I found Bailey chasing it, UGH! Now I'm concerned that these two are really going to tango or that Foxy will be around when Avrianna walks home from the bus.Amazing how fast your thinking can turn to a thought of beauty n awe to fear.

Here's Danny playing around with his newest PT. It's so cool that PT Peter is working once again with Danny.....as Peter was the first PT ever to work with Danny in the NICU when he was first born. Once again I'm amazed with my Lil Rock Star! He's holding his head with awesome control, interacting with us, and sitting/standing like NEVER before. Danny looks SO BIG, when did my Lil Man grow up? Where did the time go?

I just LOVE looking at this picture!Danny's facial expressions say it ALL. ..... you want me to do what?Danny is playing his tricks that he's got up his sleeves once again. Since Monday nite he has been bleeding from his trache (Tuesday he was alot) so Aleana (RN) and I took him to CHOW to have him assessed. This was the first time he was back to this hospital since his summer "camp" and he was NOT impressed when we got in the front door. He got very upset, turned red, and became super duper spastic. He knew exactly where he was and didn't like it :(. I tried to reassure him we weren't staying but NO GO so I had to give him something to calm him down or his would have worked himself into a serious tizzy that could have made us stay, I was NOT having that! But after his meds he calmed down and he really had a great appt. Here Danny is chilln out listen to his iPod waiting for the doctor to come in and scope his trachea.

The low down on today was......Xrays showed nothing exciting :), the aspirate cultures grew out only spit but they still did a new culture in the clinic just to be sure :), the docs down in CHOW are now not so excited about the bleeding once they saw how awesome lil man looks :), they were able to get an ENT to come in and do a scope down the trachea to see if they could find any issues :)

Issues with bleeding could be due to (best to worst) ~ pneumonia which we ruled out, granulanoma (scar tissue) due to suctioning or rubbing of the plastic, or from a blood vessel. Of course with the scope they found Danny's issue to be ............ a Blood vessel, BUT it really isn't too bad as it was small and the irritation is located in the opening of the trachea so they were able to easily cauterize it. Hopefully that will take care of it. The theory is it's because of his sensitivity to foreign matter (plastic of the Trache) and the skin broke down. The ENT doc said that Danny's lower trachea area looked awesome especially with how sick he has been. Next visit with the Trache team will be in 3 months :)

Other then the bleeding issue Danny has been doing WONDERFUL! He had a GI appt here in the FV clinic and we got good reports there :) Next specialist appts will be next week,Thursday, back in CHOW to see the Ortho to address Danny's pain, hip, and kyphoscoliosis ~ Urology to address Danny's kidney & Bladder issues ~ and Danny is going to have his Baclofen pump refilled with the Rehab doc.

Tomorrow is another bright n early day as Avrianna and I will be leaving the house around 6am for a swim meet in Green Bay. She is due in the water by 7am and she is entered in 6 races so we'll see what her energy is like in the afternoon, LOL. We are driving with another mom and Wave swimmer so it should be a nice trip. Go Avrianna!

With some help from Ms Aaryn and leg immobilizers Danny was standing up today. Now with him not being in the stander to give him the height I was able to SEE how tall my LIL man is. Avrianna is just about a hold head taller then Danny. She's my sprout!!Yay ~ Good Job standing Danny!Checking out the view from the 6th floor ~ Doesn't he look GREAT. Yeap ~ Avrianna has to be around to help him out ALWAYS, he's stuck with her FOREVER, LOL

Love his eyes......seriously Mom you're NOT going to help me out here?

Dr Kasper called this morning and as we wean Danny off of Topamax for his seizure we are going to add back Tripletal. Danny was on this med once before, but he has issues with maintaining his sodium levels on it. But I would rather have to add sodium to his diet then have to deal with stones on an on going basis. It's the lesser of two evils :( The doctors feel that Danny won't do well just dropping one of the seizure meds so we have to replace it maintaining his seizure meds to 3 meds, UGH! We'll have to go in more for labs to watch his sodium levels, but I'd rather do that then surgery from painful kidney stones all the time.

Dan's Dad, Papa and Claudia are due to be here soon. Avrianna is so excited she is going to be able to hang out with them for a few days. I'm sure we'll have to get some shopping done while they are here as it's still raining a cold here, what better to do then.....SHOP.

Thanks for checking in on us. If you have a moment sign our guestbook or post a comment after the post....We LOVE to hear from you too :)

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.

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 faces....so 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.