Thursday, December 22, 2011


8 years ago I wasn't prepared for .............. for what was about to happen to our family, the next day. I could have never been prepared for how devastated we would be and how fast our lives would spin in a tailspin. How can one be?? I was so clueless! Our family would NEVER be the same. I was prepared to bring my sweet baby boy into this world happy, healthy, SAFE!! IF only........ I had a crystal ball.
I stare at this picture more then I care to admit ~ This is the last picture I have with my baby boy healthy n safe and I can't even see him. But I know he's in there with everything working like it's suppose to... all his fingers n toes are wiggling, he's sucking his thumb, his brain is functioning, he's moving and kicking around in that small area (he's moving more in there then he ever will out in the BIG world). I was so excited and happy I couldn't wait to see my bundle of joy.
This is MY day that I set aside for myself! The day before Danny's birthday is My day to get it all out! To grieve for all the lost dreams that I had for my son and family. Everything that was taken away... in an instant it was ALL GONE. And once the damage was done there was NOTHING I could do to get it back or make it better! Today is the day where I can be ANGRY!! Angry that this happened, angry how it playing out, angry there is a world out there that my son will NEVER participate in, angry that he has to go through life in fear and pain, angry I will NEVER hear him say "I love you Mom"!! Angry that Avrianna will not have a "normal" relationship with her brother, angry that she has to worry about her brother more then she should!! Angry that I have to keep in the back of today the day? The day where I will see his baby blue eyes looking back at me for the last time. Angry that I have to keep this fear bottled up inside me EVERYDAY!! Today I pop the cork and let myself be sad. I GET to be SAD!!
Don't get me wrong I LOVE my son more then words can express and I would give anything for him. But I just wish he has what every parent dreams for their child .......... DREAMS! The dreams that he doesn't know exists :( I need to let it all out to be able to start a new, wipe the slate clean, a "new year's resolution in a way.
I did EVERYTHING right! So WHY!?! Where's the logic? Where's innocence? Where's the life I dreamed for my SON!!
This picture is the first I have of Danny, out in the Big Hard Cruel world! Fighting the ultimate fight~ one that no infant should ~ there was NOTHING I could do but hope n pray. This is Total helplessness! This Lil boy you see here will never be the same as he is forever broken. He was brought into this world and taken away injured and never fully repaired..... As you see the brain can NOT be fixed.
This picture has such raw emotions for me.............You can't even imagine! I am reaching out touching my precious Lil boy with only my finger tips wondering if that will be the last time he will ever feel my touch. Does he feel me? Does he know I'm there? Does he know I'm sorry? Sorry just doesn't seem to fit but that's all I could say, is sorry ~ Sorry my precious boy you may not make it through the night .........sorry you will never have what I wanted for you, sorry I will never know who you truly were. Amazing how all that can run through your mind in a matter of moments. How does one ever recover after something like this? Do they??
I wasn't able to hold him, talk to him, Kiss him, let him know Mommy loves him. All I was able to due was Just touch him with my finger tips....Will he continue to fight? Why would he, I'm sure he was scared, cold, and all he knows is pain. He isn't even breathing on his own, will he ever breathe? Then you sit and wait and wait it's so quiet, it's so alone, it's so helpless. I remember after getting the grim prognosis just crying out "OH my sweet boy".
After the dust settles you just want to scream WHAT THE HELL HAPPENED?!?! As it's goes by like a flash but will leave a lasting impression you just can't shake. I am forever scar'd. How terrible is that, on the day of your sons birth and even though he's here.....there is nothing nice to say? Traumatizing !!! Guilt!!! I too am broken :(
I look back at his 8 years of life and the Lil Man he's become. It's all at a very hard and painful cost, over n over n over again he's overcame diversity and medical prognosis'. We've fought the fight and we'll keep on fighting! I was trying to figure out how many times he has had surgeries (I should have kept better track of them) but I think this last one was 37. AMAZING!! What a road it's been and I'm grateful and thankful I am able to walk the road with him. I've learned so much from him and I've met some pretty amazing people along the way.


Tomorrow I will celebrate your birth, your life, your accomplishments, our New Dreams!
Danny ~ You ARE AMAZING Lil Man and my hero....I LOVE You and will ALWAYS be there for you Danny ~ Mommy
I know you know different.....I just wish you didn't have too You are my Inspiration!!

So now onto some updating ~
Danny's new wheels :0) We got it yesterday, just in time for his Birthday! He's only sat in it for a few minutes and I've had it in the house for less then a day, BUT this chair (so far) seems to be IT! All the little bells in whistles that Danny needs, but in a fun and functioning version. It's got everything plus it folds (somewhat) and is light weight! Not to mention the awesome color, heehe.
It's a Convaid Rodeo Tilt n recline :)
Thanks to Peter from Walking and Wheeling (Danny's Private PT) for setting us up with this sweet new ride :) I hope to put many miles on it
Yesterday Danny also got his staples taken out. The incision looks good. The area around it is alil angry as I believe he is reacting to the ointment we were putting on it. So we've changed to a cream in hopes that will help. He heals so well....I just wish his system would bounce back as fast. He continues to dance a fine line but we are able to control him at home. We still are making strides to recovery but it's 2 steps ahead and 1 back....but it's still forward :)
We did some labs on Danny at the clinic and all of them have chilled out and are reasonably back to "normal". We were able to discontinue the TPN and Danny has been tolerating his formula at full strength now we just have to work back up to his usual routines. That might take awhile but we will be working towards it each in every day.
I've been every busy working at the school with all the holiday festivities going on. Tomorrow is Avrianna's last day before winter break. I know she's excited about that as they are having alil pizza party and then no school for a week. Too bad we have no snow yet for the kids to play in over break :( It's going to be a brown Christmas over here. I am officially done with buying gifts and even the wrapping so let the Holidays BEGIN!! I do have to say I was sweating it a bit as I'm usually done long before this so I'm relieved to know I was able to finish WITH some time to spare.
Dan is busy building another laundry in Oshkosh on top of finishing his certification for Firefighting. He is hoping to have the laundry up and running near the beginning of February, but we'll have to see. My garages are FULL of laundry equipment, but don't worry I still have a parking stall inside :) And you guys say I'm the crazy one......I beg to differ, LOL. So he's not to disappointed that there is no snow from him to remove throughout the day.
I'm sad that our lifestyle just won't be fair for us to adopt. A few month back Dan and I had looked into the process again, but with the recent events around here that helped refresh me with previous events's just not fair to our family to add to our craziness. Nor even fair to a child that we would add to our family with all the hospitalizations that I'm pulled away for. It wouldn't be so difficult if we weren't inpatient so much but we are so unfortunately we are not going to pursue adoption now. See it as selfishness or selflessness as with this one I'm not so sure which way of the spectrum it lies. Our lifestyle isn't easy....but it's US!
Thanks for stopping by to check on us! You are my saving grace, my outlet. If it wasn't for you guys and the support I get I would be even more crazier then I already am, heehee
Merry Christmas & Happy Holiday

Thursday, December 15, 2011

We are HOME ~ Pics ~Update

Seeing I wasn't able to post pics on here from the Hospital's network, and now that we're home I thought I would update you guys that don't follow me on Facebook with some pics.

Mr Hot box in the local ER ~ We left there with a Dx with Tracheitis, from being there for 6 hrs
Mr Kissy face the next day down in CHOW after being admitted for Pancreatitis The next days ultrasound showing ~ 3 Gall Bladder stones along with thickening wall and sludging. I'm not sure how they see all of that but I do see the 3 stones. I was told that this is an issue that needs to be taken care of, BUT it may not be the reason why his pancreatitis flared.My beautiful baby girl all dolled up to sing in the Christmas Concert for school
What a great Concert it was....I'm so glad I went :) I missed her so much. I'm so proud that she is very good when I am gone.
Our suite for the 11 days.
This is the first time he's ever been stapled. I thought they used the same incision as the Nissen but they ended up lengthening it. His very bloated tummy, sporting his new Gtube pad.
A couple day post op looking very good ~ especially with his blue new Trache n Gtube pad :)
The very large Hematoma in his groin from the CVL they put in just in case he needed blood or other things for extra access. Which is as painful as it looks for Danny's reactions :(
I can't even begin to tell you how exhausted I was last night slipping in my OWN bed. I don't even remember my head hitting the pillow. We were discharged Wednesday morning and we were unpacking the very full van (how does one acquire so much stuff in the hospital?) by 12:30 :) I was on a mission to get it all done before the Home Health company came by with all of Danny's TPN and IV supplies. Even though we are home he still isn't running on all 10 cylinders yet, but we are comfortable with doing TPN and blood draws at home. We sure are an ICU room now....all the pumps, vents, incision care, monitoring and Port access. It's all worth it just to be home :)
We did run into a snag with the Home Health company that brings his supplies. I had called once I noticed the supplies I ordered, before we were admitted, weren't here at the house. I was told they are no longer going to support us with Danny's supplies or equipment because we went with a different Home Health company for his Vent. Mind you they changed manufactures on their vents and CHOW doesn't support theirs I had no choice to go to a different company to get what we needed. This my friends was their "out" and wash their hands of us. They don't make enough money off us ~ so drop us this first chance they could. Gotta LOVE the system~ NOT! Of course the cowards didn't tell me this when I placed the order and I had to find out when I'm OUT of supplies. One being his formula, sigh! A formula that I just can't go buy at the store because of his allergies and sensitivities. Luckily I found out the pharmacy will order it up for him :) What a pain in the ass, I have worked with them for the last 7 years you'd "think" they would respect us enough to not jeopardize my son's health an weal being. WHATEVER!! This coming from a company that I used to get EVERYTHING from, his supplies, food, the ceiling lift, the wheelchairs, the standers, everything. Their loss as I will NEVER go back to them, EVER!! Not how they treated us in the end and it's over something that was out of my control....they couldn't get us what he needed.
Well I'm not sure how LONG we'll be home as my Mr Social Butterfly. I believe, is planning a Round Robin to head back to CHOW. This morning something triggered him to go into a screaming mess. He was crying, spastic, sweating, tremoring it was very scary to watch and VERY heartbreaking. His RR was 84, HR 184, and sats slowly decreased so we called up Dr Kasper for his wise words of wisdom cuz Gail n I were ready to call 911 (I wasn't going to call Dan and see how long it was going to take him to realize his pager was dispatching to his own home....Yeah I know mean, but kinda funny??) Thankfully Dr K picked up the phone and ran right over to our house. We gave MANY drugs to help him with no such relief so we doubled some of them and then it kicked in. He was snowed finally which meant he needed to go back on the vent cuz his sats dropped down to 76, seriously my nerves are shot!! Unfortunately the med relief hasn't lasted too long as I see he's trying to open his eyes, I just hope he stays comfortable. He should have been out for hours, but no! I'm not sure what today is going to bring, but we'll have a better idea once the labs we drew, while Dr K was here, are in. Needless to say my mind is thinking I should start to pack up the bags again as this party might continue back down in CHOW. I DON'T want to go back! Even though I've been just talking up the wonderful care we received this admission, I don't want to go back this soon!! One day home just isn't enough for us. What a roller coaster ride this has been the last 2 weeks. I'm not sure how much more I can remain "stress free" ~ HA! before my MS starts to act up. I know I'm not running on all my cylinders either, but I do know I can get alot worse too :( The roller coaster is set in motion so hold on....hell put your seat belt on too.
Please keep my family in your thought n prayers. All I want for Christmas is .......... HOME together with ALL my family!

Sunday, December 11, 2011

Moving in the right directions

Danny is doing amazing recovering. Since surgery all his pancreatitis numbers have calmed down and he is back to "normal". This is wonderful which means the trigger for this attack seems to have been the gall bladder. Which going into the surgery we all weren't too sure if the gall bladder problems were in fact THE reason, we knew it was a problem that needed to be addressed but was it the problem driving his pancreas to get angry. With Danny having multiple medical complexities it is not a cut n dry thing with what could be wrong, so my best option was to remove the one potential trigger that I KNEW was going on. Now because the gall bladder is out it doesn't mean he won't have another episode but I can only hope. The surgery went well, the gall bladder wasn't "impressive" (as they say for bad things in the medical world), and his labs are continuing to regulate. His pain meds are needed further apart which is a great thing, but his his BIGGEST hurdle today is pain driven from coughing and wretching. It's very difficult to watch him cry, it's just breaks my heart. I used to think that since the trache it was hard to watch the "quiet" cry but now the cries where he can actually push air up n out to make squeaks and whines are MUCH more heart breaking. The "plan" today is to start up zofran to help with the wretching and change his meds back to oral from IV. Thankfully he is still on TPN for nutrition so most of the meds he he normally gets at home are in the TPN as they are vitamins that he lacks. This is a HUGE step to going home is if tolerates his meds via gtube. We can do the rest of recovery and getting back to normal at home once he is ok with meds in the gut. He'll need to
****med in gut did NOT work this am, poor bug. Another time :(******
Well this is alil set back, but we're still doing ok. Slow n steady is the game Danny plays. He IS being on his own already so we know one system is back up n running :). The wretching has gotten pretty bad even with the zofran, how painful after an abdominal surgery, so I hope it subsides soon.
We've learned that Danny grew a new strain of pseudo in his trache aspirate so he's been put on an antibiotic for that....funny they now had him a dx for tracheitis when we really came in with it, but the pancreatitis and gal bladder trumped it :(. Infectious Disease also found him positive once again for VRE, which I'm totally bummed about. He got this wonderful bug from a friend his nurse was paired with in the crash of '09. Danny needed to have 3 negatives with a certain time frame not on any antibiotics so it s taken this long to get all the tests in. The one would have been the last negative he needed to be out of VRE isolation, but unfortunately it came up positive :(. I don't think we'll try the process again and just bow down to being in isolation forever. It's not a bad thing, meaning the opportunity to pass him more bugs is less likely, but I'm said that he can't have "fun visitors" like the therapy dogs or baseball players come in when they are here. Isolation on top of being inpatient is just another stressed as you just feel like out casts with all the gowns in gloves they need to where to just come in. I feel bad for my Lil Man ...... That no one will touch him in house without those blue gloves n yellow gowns that are so "inviting". You know what I mean?
Dan and Avrianna came down yesterday evening and it was nice to see them. But its a bitter sweet to see them and then watch them drive away, usually with tears in both Avrianna's and my eyes. I miss them so much :). It's never an easy time to be away from your family, but luckily I so blessed that Avrianna does really well when I'm gone .... Wish I could say that about Ms Bailey this time. Yesterday would have been Danny's 8th birthday celebration party and it makes me very sad that we had to cancel it. Just means we will need to plan a bigger n better party later :)

Friday, December 9, 2011

Surgery Update

The general surgeon came to talk with me right away. He told me the gall bladder had to be removed BUT we could wait if we wanted to have it removed. He wouldn't push it off more then 6 weeks, but we could wait. Even though the proposition sounded good to NOT have surgery right away the idea of going home and having to come back, possibly emergency, didn't sit well with me. So he was put on the surgery calendar for Today. It was suppose to be at 3 this afternoon but I'm thankful they were able to push it up to this morning. I was afraid that it might not happen as last night was alil rough on Danny. After his Mr Jiggles treatment last night he went NUTS with shaking, breathing fast, fever, high heart rate which required more pain meds. He finally calmed down and slept, but was up at 4am doing the same thing. Pain meds were given again and he did coming back down to a more Danny vitals.
They came to get him around 8am but the procedure didn't start till about 10, as I guess I was right on with telling them his internal anatomy wasn't right cuz 5 attempts with ultrasound/X-ray and 1.5hours later he presented to be challenge for his 2 extra lines. The thought was he needed more access then the med port for all the meds, anesthesia, and blood transfusion for surgery. Thankfully the extra access was the only challenges for his gall bladder removal as everything went well and he didn't even need blood. The incision site is where his scar is from his Nissen/fundoplication so there is no extra "war wounds". Woot Woot! They are keeping him paralyzed until later today or even till tomorrow so he reminds comfortable for alil while longer. He looks GREAT!! And I'm so happy he is back in his room where I can be at his side.
The surgeon needed to do an "open" procedure because of the location of the gall bladder and the ITB pump. It would have been too risky to do it laparoscopically so his surgery and recovery is going take longer. They stapled the incision as this procedure has a higher risk of infection so with it being stapled it will allow any bacteria to ooze out easier rather then being sealed in.
Anxiety was high this more I'm not going to lie. You would think after all the procedures he's gone through it was start getting easier...but NOPE! On the contrary It was very difficult. I am glad I saw his labs from this morning as my anxiety was eased (a little bit) because his labs shown his pancreas & liver markers were starting to increase again. Possibly the reason why he was irritated last night. It needed to be done and now he can start the road to recovery
Thanks for following us and keeping Danny in your thoughts n prayers.

Tuesday, December 6, 2011

Gall bladder

The ultrasound yesterday has shown stones in Danny's Gall bladder, sludging in the gall bladder, and thickening of the gall bladder wall. This explains A LOT with some of this issues that Danny has been having (not just with the acute issues). In talking with Palliative and Dr Kasper we feel the best option for Danny is to have his gall bladder removed. I will now have both kids that will be gall bladder free, avrianna has hers out on Dec '08 steming from her blood disorder. The surgeon has been paged to get consult and then we'll get a game plan. Danny's pancreas #'s number continue to go down with The gut rest so Now that surgery is in his very near future I can bet they are going to start TPN for nutrition.
During respiratory therapy this morning Danny stared to bleed from his trache, ok really?? Theory is a few things (suction trauma, trauma do to cuff being inflated so much because of the vent, or there is something wrong with is trachea) so we wait to see how today plays out, if it gets worse or better with a few tricks of the trade, or is a more invasive approach needed. Danny is really reacting well to the pain long as they stay on top of them, Because he has a high pain tolerance they are apt to wait longer to give it to him. Which I am pushing to make it more scheduled so heh as a more restful stay. This morning he was breathing really funny and I couldn't figure out why till I realize he was clenching down from pain :(. Pain meds were given and he is breathing much better :)
Last night I drove home to go to Avrianna's school christmas concert. I'm so glad I went! It was so cute. I am so proud of her :) Then afterwards it was back to the hospital. This lifestyle SUCKS and I don't wish it on anyone. To be separated from your family is just plain awful :(. I can only hope we are not here for a very extended stay. I am even more thankful that I am done with my christmas shopping so I don't have to power shop when we get home, or even worse have nothing for Christmas. I have some wrapping left to do and then I'm finished.
Unfortunately I have to leave Lil Man for a couple hours today to go get my MS infusion, but thankfully it's right here in the Milwaukee area so it won't be too long for me being away. Today we have a nurse that is framiliar with Danny so it makes it alil easier to leave. This hospitalization is really testing my trust issues as you all know I NEVER leave him alone while in the hospital, so my anxiety levels are HIGH.

Monday, December 5, 2011

Go BIG or Go Home

And boy does Danny do it BIG! We are currently inpatient at CHOW rm# 507 ICU with tracheitis and pancreatitis. I have one sick Lil Man :(. So let's back track a few days a give you the scoop. In my last post you knew Danny was still so so and still wasn't back to himself. Well Saturday afternoon it all came to a head, once I got home from Avrianna's swim meet.
Off to the local ER we went with a fever, breathing like crap, and seizures. We sat there for about 6 hours and the verdict was tracheitis. As he sputium tests grew out moderate WBC, gram + rodes, gram + cocci/strep, gram - cocci, gram - bacilli, gram + cocci/staph. Pretty much anything that he could have .......he does :(. Where in H€\\ did he get that!! They gave him an IV does of cypro in the ER and said that because we had a great support system at home we could go as long as I felt comfortable. Which we did, but not before we had a full blown grand mall for them to see, nice Danny real nice! Thankfully the rescue med worked and they were STILL comfortable with us going home. We just needed to keep him on the vent for support, treat fever n seizures, and go out in the am for oral cypro. Home we went :) ,but we knew if he got worse we'd be coming right back. The next morning he was really not himself and was giving Aleana, RN some grief. I was at the last day of Avrianna's swim meet - which by the way she did fantastic, I'm so proud of her - 2 days 8 events 4 medals n 4 ribbons :). WAY TO GIRL! After the meet Dan was on a mission "impossible" for this ciproflaxin that Danny needed. He went to multiple pharmacies with NO luck. I called Dr K to see what he wanted to do next and then $h!¥ hit the fan, UGH!
Dr K checked over the labs n such that were done in the ER the night before to see if there was anything more definitive if the antibiotic needed to be changed anyways. No he didn't find that, BUT what he did find was his lypase #'s were high (normal 23-300) at 2644, YIKES! So Dr K called the lab to run a different test,stat, and it was high too, which means Danny has pancreatitis. So I got the "pack your bags you have to go south" :( As I was backing I get a knock on the's Dr K, how awesome is that!! He wanted to give Lil Man and pep talk AND me the blessing to drive him down by myself, cuz I didn't want to go via our chariot the ambulance. I got the thumbs up to go and off we went. About half way there Danny started wretching which made it for a long more stressful ride. Once we got to CHOW we unfortunately had to go through the ER, as we usually are a direct admit,but we were able to sit around and watch the Packer Game before the commotion.
While we've been here he reminds stable but still very ill. Thankfully his pancreas numbers have started to drop with just being NPO (gut rest). He is receiving his meds and hydration through IV, we will access tomorrow wether he can start small feeds or go on TPN. It all depends on what the ultrasound his going to have later says and want the labs show. He is having some issues with the amount of fluid thHimyarites him and he's now 3rd spacing and puffy and we are hoping his dropping hemoglobin is do to too much fluid and not something else, so they are going to decrease fluids and watch him closely. Ive signed papers for transfusion IF he should need it. Let's hoping it will recover after the fluids are lowered.
We sit and wait now to see how his system reacts to the meds to figure out what the next step is going to be. I'm not sure how long this stay is going to be :(, but my gut says its not going to be quick fix :(. I will be leaving this afternoon (yes I have to leave him alone in the hospital, yikes) to go see Avrianna's school Christmas concert tonight and then return here later in the night. I'm very anxious about leaving him here alone, as I've really had bad experiences but I need to be home for her concert. The timing really sucks for this inpatient, but then again there really isnt a good time for there? This weekend we were to have Danny's 8th bday celebration, but I needed to cancel :(. I'm very sad, but it is what it is and we just need to get him better. It's snowing here in Milwaukee so I will have to leave even earlier then I had planned, man this is so hard to lead him :(
Thanks for checking up on us. I will keep you posted

Thursday, December 1, 2011

Let the Holiday's BEGIN!

Our 2011 Christmas Card
Our 2011 Christmas tree :)Thankfully this year I am on my A game and was able to decorate the house inside & out over the weekend after Thanksgiving. I am NOT a Black Friday shopper, I use those 3 days to get the house ready for The Holiday's. Last year was a difficult one for me as I was in a full blown MS flare up and it took me about 2 weeks to get everything done. It took everything I had to get it done, but not this year! I was able to get it done over those 3 days AND I enjoyed doing it. YAY!!
With the Season of Giving our family holds onto tradition and gets SICK! Dan goes up Hunting and comes back not always with a deer, BUT he does come back SICK. Which in turn shares the bug with the family. Isn't that NICE?!?! Avrianna got it next, GREAT! She actually stayed home from school, which was the first time ever she's had to stay home sick from school. With the both of them not having spleens it's always hangs with them longer and hits them harder. STAY AWAY from Danny and I, who BOTH have crappy immune systems. I know what a family we make up ......dysFUNctional all the way baby.
My Lil bug trying to steam out the chills in her body, guess it works better in Momma's tub :)
Thankfully so far it hasn't effected Danny or I much. I think Danny is still battling his dysautonomia which was kicked into HIGH GEAR after this last surgery. But you wouldn't know it with his attitude :) The day after they grew his rods out 1.5" and his sitting up all by himself, smiling, and trying to talk.
Look what I can do ~ "All stressed out and no one to CHOKE". Love his sassy t-shirts :)
Even though he's been all smiles during the day....when the night comes it's another story. Danny has always had a hard time regulating his body temp which is why he likes to hangs around 93-94 degrees...that is his normal. Anything over 95 and his system goes into over drive...his body goes flush n sweaty, his HR and respers increase, and if we don't intervene he continues to increase his temps. Unfortunately with the amount and location of his brain damage he can't do it on his own so he needs someone to be his thermostat. Whenever he goes under anesthesia it just heightens his dysfunction of his autonomic system (dysautonomia) and this time it really has been an issue.
We are trying to figure out if it's to do with "Puff" ~ here's his new one LTV1150
This is really the first surgery he has had with "Puff" and we haven't found that prefect setting for Danny yet. Even before "Puff" Danny's had issues with heated humidification on the mask aerosol so I'm playing with the setting to see if it I can control Danny's body temps better through "Puff". The heater and the heated circuits on "Puff" are just too warm for what Danny's body is acclimated to. That's my theory anyway. Last night I brought out the fan to blow on him and lowered his heater temperature, which seemed to help. So tonight I'm going to try and disconnect the heated wire and just have the heater going along with the fan to cool him off. It's a work in progress and I'm on a mission to find out what's the best route for Danny ... even if it doesn't fall within the "normal" guidelines. I swear when you ask for options the "system" doesn't like to do anything that isn't written in black n white. Well Danny is ALL GREY people so lets think outside the box. Wish me luck as I know my support from the "system" won't have my back on this one.
Avrianna has her home swim meet at the Neenah High School this weekend. How exciting!! I'm hoping she does well seeing she hasn't been feeling herself all week. Her school Christmas concert is this Monday so she's been singing up a storm around the house to be ready for her on stage performance.
Danny's 8th Birthday celebration is right around the corner and we're very excited to be taking on a new Project this year. In Leau of presents for Danny we are asking his party guest to get supplies, toys, and gift cards for a local program that helps out local families who are inpatient. As I know ALL TOO WELL when going into the hospital you are not prepared, so this program puts together baskets and gifts to the parents and child. This project is very near and dear to my heart...Not only because I've been that parent, but because the Mom that created the program is a local friend. The program is The Princess Kylee Project and it was created in honor of ^Kylee^, by her mom, after Kylee's passing this spring. I had the pleasure to know Kylee in person and she will be forever missed. Please take a moment and stop by her website and see the wonderful things that they do. They just posted a new Hospital Holiday Wish list ~ if you'd like to participate in donating through Danny's 8th birthday celebration please let me know and we can work out how to get the items to The McGlin's. Danny's party is going on Dec 10th so lets work together and see how many great things we can get! What an amazing thing to do to not only to help out families, but to keep Kylee's legacy alive.
Thanks for stopping by to check on us! Pleas leave a comment or post to let us know you stopped by. We LOVE to hear from you as well. Happy Holidays!!