Need help with Equipment

=) I finally updated my blog and I am in desperate need of your help! Nicky is suppose to be getting his wheelchair and walker ordered this week, these will be the ones he uses when he starts JK in Sept. Can you please view my choices and tell me what your opinion is or if you know of better equipment can you tell me what it is you use?

Thank you!

I hope you are all doing wonderfully, haven't heard from any of you in ages, must all be busy just like we are.

Logen's Diagnosis

Hey Guys- I say Liz's post on my blogroll so I thought I would post this here to.

Logen was diagnosed with a Mitochondrial Disease this week. Rough week going through the diagnosis thing again. :(

Hope all of you are doing well. I keep meaning to check all of your blogs to see the kiddos and hear what they are doing. We've just had some not-to-great stuff going on and I haven't had a chance. Soon, I hope. Take Care Guys!

hello

I take it no one checks this any more? lol it's kind of dead where is everyone and how is everyone doing?

hello!

where all you all? how have you all been doing? lol been a silent bunch lately, I hope that is a really good thing!!

-Liz

Nicholas

while things are going....that is about all I can say, sorry it's been so long but we've been mighty busy with endless illnesses in this house. Everyone seems to just keep passing bug after bug around UGH! While anyway Nicky's doctor from the asthma clinic is on mat leave and a respiratory specialist from sick kids has taken over for her, and it's a mixed blessing. After being told SINCE BIRTH his day-time snoring was "normal" and he was just a "grunt baby" we are now told it is "far from normal". After reviewing his records and checking him out she is almost 100% certain he is suffering from micro-collapses in his lungs while he's sleeping, but she did say his issues could be caused by two things or a combination of the both (but is still certain he is having collapses and tests with confirm it). She said he is either having the micro-collapses, breathing in food/liquid, or both which is why he's having so many bouts of URIs, pneumonia and his asthma is still out of control so he is being booked for a sleep study and feeding study. She did say that less likely he is seizing in his sleep but is highly doubtful of it but it will still be looked at as part of the routine when they do the sleep study. We've also had his meds changed a bit so hopefully we will see some better results now but we go back in 2 months for her to reaccess him. He also goes in in February for the last measurements on his eyes and he's finally having his surgeries booked so it's going to be a long year by the looks of things. Two eye surgeries, a sleep study, and a feeding study...OH BOY WHAT FUN! Please keep him in your prayers and pray that she is wrong about the micro-collapses and the breathing his food/drinks in. He has enough on his plate already poor boy doesn't need any more things to deal with!!!!

On a good note 4 days shy of 10 months Matthew WALKED! Yes we have a walker now lol he also like climbing EVERYTHING you turn your back even for a split second and he'll go from the floor on the other side of the room to the back of the couch and lay of it and wave at you with this cute little grin on his face like he's saying "HA HA Mom you aint fast enough to stop me from climbing on the couch" lmao so as you can imagine he is keeping us all on our toes! He has also mastered climbing almost out of the crib and scaling baby gates.....that has made child proofing attempts far from easy lol it's more like an adult obstacle course when he decides to take off, but at least I'm getting my exercise....who needs weight watchers when you have a very active baby on the loose?

-Liz

Karen & Jackson

Hi all, just wondering if anyone ever hears from NJ Karen and how things are going with her. Darts to BBC for making everyone disappear!

DESPERATE NEED OF PRAYERS

Logen is in DESPERATE need of prayers. I am in no shape to repost here. Just pray for us, For Logen really.

Our new blog link: http://splendidmayhem.blogspot.com

Nicky-update

I updated our blog lol and it is LONG! Lets just say it's been a long few months! Nicky has been sick most of the time he's been in school, but is doing so wonderful there, has had many asthma attacks, migraines, and three bouts of pneumonia and is on a whole list of meds now. He is now on maintenances doses of Naproxen for his migraines (after 3wks steady to break the cycle), FlowVent & Ventolin (sp?) for his asthma and dex when his infections get into his lungs, advil & tylenol to control the pain of his muscle spasms, colease (sp?) for his bowels, and has been off and on antibiotics for the past three months and they are wanting us to look into botox for his legs! He will be booked for his eye surgery after his next eye measurement in Feb (they want another measurement in hope they do it 110% right the first time so he wont need another surgery) but has avoided the surgery on his penis YAY! AND AND AND He FINALLY has his new AFOs YIPPEE!!! They don't come home for another lil bit because they want to make sure they fit right and they work alright for him, they are at the school, since they have already had to send them back once but OMG we are so happy that he finally has them again! I posted a ton of new pics on the blog since we haven't been on to update in ages but since things have calmed down a bit I think I will be able to keep up with it better lol

-Liz

NBBC

I just wanted to let you all know that I started a roll call post on the NBBC, so if anyone is interested in joining us over there also, feel free. Let us know you are there!
Thanks

I HATE Babycenter.............

I feel like they have completely tore us all apart. I miss all of you so much!! I know we have this blog & many of you have your own blogs (which I check religiously!!)...but it's not the same :(
I think about all of you soooo much & wonder how your kiddos are doing....has Niki had her baby?? What about Carolyn?? UGH!!
Sometimes just logging in to BBC made my day a WHOLE lot brighter....especially if I was having a "downer day"......
I just wanted you all to know that I DO think of you all often & I hope you are all doing amazing! We are good here...Joshie is in Kindergarten & loves it!! Mia will be 2 in January!! (WHAT??) She's quite the entertainer.....LOVES her brother to death & really helps him out when she can...
I guess I am just trying to say that I MISS you all TERRIBLY & think of you all often!!
LOVE & HUGS TO ALL OF YOU.....
& I promise to try & post more often....