Pretty cool fortune I got :)
January 20th ~ International Day of Acceptance! Kids with special needs are not sick or gross, being differently ~ "abled" doesn't mean that they can't do things, they just do it their own way in their own time. They only want what everyone else wants...to be accepted. Here's to honoring all made in their unique way. WE LOVE YOU DANNY!
Danny got a package in the mail ~ Ms Annie, his runner, sent him some new medals. They are on a wonderful pace to achieve their 2015 goals! Way to GO Team Danny!!
Supporting our Hero ~ Danny my Lil Man!!
Talking about Heros' ~ I'd like to share with you the essay Av wrote. She's one amazing sister I tell ya. Man I LOVE these kids!! Kleenex's ready?
I know ~ right? Just wonderful!! She is becoming a wonderful writer .... not sure where she gets that from, lol. After sharing her essay on FB and friend of mine asked if it would be ok to share her essay in a blog post as she couldn't just let it go without being noticed by her friends, family, and fellow SN families. Please stop by HERE to see the wonderful blog post she did. TEARS all over again. I have some wonderful kids!!
Last Wednesday we took Danny up to Green Bay to have his 6 month follow up with Dr Edgar, his neurologist, and to have his ITB (Intrathecal Baclofen) pump refilled. Danny is at a dosage that the meds expire before we can use it all so every 6 months is when it needs to be refilled. If his dose ever goes up then we might have to go in sooner than the 6 months as we would run out of the med before it expires. We had a great visit. Danny has been doing very well on the Neurological end of things so we didn't have to change anything. We decided to try Botox in multiple areas instead of increasing his Balcofen pump for his increase spasticity in his elbows and knees in hopes to prevent fixed contractures.I can't believe that I, Ms photo guru, hadn't gotten a picture of these 2 together before now.
This photo speaks volumes.
We are so VERY LUCKY to have such an amazing Neurologist working with us. This man has a heart and really truly cares about "his" kiddos. He takes on children that most doctors will not touch....the most complicated cases. I admire his knowledge and dedication he has towards trying to give Danny a quality of life. Bless his heart he really tries with every effort he has to fix these kids.
Well I have to tell you......
All the talking Danny up with how well he was doing when Danny was in the room, totally back fired and I jinxed it ~ As the very next morning all hell broke loose. Danny had a seizure that lasted about 90 minutes from start to finish. It was pretty intense at times. We managed to stay at home, but it was close to calling 911. Thankfully on his day off (like he gets a day "off") Dr K was with us via phone through most of it. We exhausted our resources at home so if things didn't start turning around quickly the only option I had left was to call the ambulance as there was no way I could have transported him in his chair to the hospital. On these occasions it makes caring for Danny at home in a crisis situation alil "easier" with all the equipment and monitors that we have. We have ALL the stuff the hospital has and I can actually SEE how his body is reacting along with the how he clinically looks on the outside. Now he wasn't in a full grand mall the entire time ~ from ramping up, to tonic clonic, to coming out of it ~ it was about 90 mins. I have been asked by many why we didn't call 911 right away. This is our life and has been for a very long time.....I got this and I've been down the 911 road enough to know what they can do for him. I tell you they don't do much more then we do here at home, other then really snow him and monitor him. We then run the risk of him picking up some bug in the hospital or them making him worse (yes it's happened more times then I care to talk about). I had a nurse here (nothing like breaking the new nurse in right away), he was hooked up on
every monitor, Dr K was in contact via phone and available to come to the house at my call, bonus Dan IS the first responder, and again this wasn't my first time at the rodeo with seizures. Danny has
had them since 5 hours of life. As long as Danny continued to maintain the numbers on the monitor that we were watching very closely I was comfortable with keeping at home. Now I also know when to through in the towel, like I said I had exhausted all the resources I had at home to try at stop the seizure and I knew that I couldn't let it go on too much longer without being out of my comfort zone as any more meds would have probably put his system into a crash scenario and I didn't want THAT to happen here at the house if I didn't have to. His poor lil body did take a hit with working extra hard for that long. Thankfully with all the rescue meds he was given he ended up sleeping the better part of the 2-3 days afterwards. Unfortunately his dysautonomia has been triggered since the seizure and we have to monitor him closer for significant temp fluctuations as he dropped to 89.7 at one point and then shot up to 102.9. His kidneys and secretions are in over drive too, so we are watching that too. I will post a video as I took them to send to Dr K and Dr Edgar so they could see what I was describing over the phone to them. Modern technologies ... man what did I do without them?! This episode has bought him a 48hr video EEG that will be put on and done right here in the home. I'm sure it will show nothing as, like I said he has been doing great with seizure control except for this one out of the blue BIG Dog. But I have been wrong before, so we'll just have to see what it shows. We have put off the botox injections for know until we can get his system back to more of a baseline.
He unfortunately had yet another BIG seizure Monday morning. This one only lasting 30 minutes and not as intense as the one from last week, but a nasty seizure none the less. I see the increase in his seizure medication hasn't done the trick yet. The 48hr video EEG goes on tomorrow, but I'm sure it won't capture anything new. I could be wrong....but
Here are the videos of his first seizure
On a good note ~ on Monday Danny got his first professional massage and he LOVED it! The woman I have been going to for the last few years agreed to come over the house and work with Danny. How cool is that!! Not only did Danny love it, I loved getting her input as to what she was feeling in hopes to get a better understanding of what his body is going through. Very informative and I'm so excited to continue to learn and give Danny some much needed enjoyment in the process. Best Christmas present EVER!
Not only does she massage Danny and myself, I started taking Av there too. With her diving and her constant on the go personality Av has been feeling some pain and soreness. Again very informative to get input as to what Av's muscles and body is feeling like. We have decided as a whole, (her
coaches, us as parents, and Av) to pull Av out of the Platform diving. We wonder if that wasn't part
of the source of discomfort for her. Platform takes a toll on ones body and I'm not too keen on screwing things up for her at such a young age. I want this to be a fun and learning experience not a grueling and painful one. So we decided to take a step back with the platform, but spring board diving is in high gear!! I have to say I think this is going to be her busiest Spring and Summer with diving competitions and camps. Now lets see if she can make it all the way to Nationals once again. This years Regionals will be held in Milwaukee, if she qualifies from there we're off to Zones in Iowa (home of the Hawkeyes and her favorite dive camp thus far), and then it's off to Orlando if she qualifies for Nationals there.
Av had a diving meet at Schroeder Aquatics and boy did she shine!! She took home 1st place in both the 1M and 3M events. WAY TO GO !!
Here's a short slideshow of her events at the Dive meet. We are SO PROUD Of her!!
|Photo slideshow generated with Smilebox|
We received some more unsettling news from the nursing home front. We are losing another wonderful nurse. She had been promoted to Case Manager and will no longer be working directly with "patients". I am so sad as she's been wonderful to work with and is amazing with Danny. I'm back to finding more nursing hours to fill. Monday & Tuesday 7-4 and every other Friday 430-830. People wonder why I don't ask for help as when I do I end up becoming dependent and attached then BAM the floor gets pulled out from underneath me. I guess I had it too good back in the good 'ol days and I've fallen naive to all the nasty lack of nurses available and lack of good nurses to work with our kiddos. More disappointment and MORE change. Oh Hum.....will things ever work out for us again. Time will tell!
I took Av and my nephew Tyler to Nordic Mountain for a 3 hrs snowboarding lesson and then the rest of the day hitting the hill. Snowboarding hasn't come as easy to the both of them verses the down hill skiing was. They both did well and agreed it was challenging but they enjoyed it. Unfortunately the day was cut short when my nephew fell and hurt his wrist. Av didn't walk away without getting a few bumps n bruises too. She woke up the next morning pretty sore from using muscles that weren't used to be used and her one knee cap has a nasty looking bruise on it. As long as they had fun right?!?
Thanks for stopping by and checking on us!