Friday, April 30, 2010

All Nighter

The roller coaster has begun!
Yesterday was such a beautiful day outside so we decided to take a trip to the store with Danny. We were gone for approx. two hours and by the time we got home I could tell Danny was "off". He is a secretion machine!! I've been up with him since midnight trying everything to help him out. At 2am I did a breathing treatment and at 4am I hooked him up the his CPT vest in hopes that would knock the "crap" out of him. NO GO! So at 5:30am I emailed Dr K with the early morning festivities around here and titled it "HOUSTON WE HAVE A PROBLEM" in hopes it would get his attention. We went into see the doc at 10:30 and 3hrs later we were on our way home, UGH. This is what I know at the moment.......he is finally sleeping (4 in the afternoon), he doesn't have strep, his lungs didn't have any real white outs, we are still waiting results on the blood work and loogie cultures. What a LONG weekend it will be around here as I try to get him well. Bring on the breathing every 4-6 hours, 2 others every 12 hours, and the other one that we can do every 6-8 ...... my head is spinning already. Danny is scheduled to have his pre-op appts on Monday, but if I don't get him better that will not be a trip we will be making. They'll take one look at him and say the surgery is OFF, sigh. I will do my best to whip him back into shape :)
Avrianna has 3 friends sleeping over tonight so I don't see sleeping in my near future, only alot of giggling, chit chat, pop corn, movies, and ice cream instead. Boy does Danny have impeccable timing! Oh yeah....tornado warnings are all over the place around here tonight, YIKES! Slumbar party in the basement
I will keep you posted.

Dear Future Physician

I came across this letter through another blog that I follow. Thank you Ann Schrooten and The Willow Tree Foundation for giving a voice to the Special Needs families towards physicians and future physicians. This WONDERFUL letter should be told and heard to EACH and EVERY medical professional. This letter is so RIGHT ON and heartfelt.
I am so VERY fortunate to have the greatest pediatrician to help me care for Danny. One that goes above and beyond the call of duty for my Lil Man, we couldn't ask for a better doctor. I always kid I need to stop bragging about him as everyone is going to want to go to him, but he IS the most caring and compassionate doctor when it comes to kiddos like Danny. Unfortunately in today's day and age there are few and far between that can compare to him. I know we are one of the lucky families as MANY are not so fortunate and I can only hope with letters like this will help mold better physicians to help aid in the care of our kids. They are the most beautiful human beings if only more would give them a second look to see what they are missing.

Dear Future Physician,

On a cold January day in 1999, my two month old son was admitted to the Pediatric Intensive Care Unit in respiratory distress. Five months later, he left the PICU with a tube in his neck, a tube in his stomach and connected to a ventilator to support his breathing. My son was born with a congenital muscular dystrophy and, as a result of his disease, he has severe muscle weakness and is ventilator dependent 24/7. As the parent of a child with chronic and complex medical needs, it’s not only important to find a physician who is knowledgeable and skilled in his or her specialty, it’s perhaps more important to find a physician who will give me and my child his or her time, who will listen, and who is willing to go the extra mile in this time of managed care. It’s important to find a physician who cares.

As my child’s physician, you need to understand that I was sent home with a medically fragile child and I had no choice but to learn how to care for him. I am capable of changing out a tracheostomy tube and replacing a g-button. I know how and when to suction my child’s airway, give breathing treatments, and hook up the oxygen. I can bag my child through a period of respiratory distress. I can adjust ventilator settings and troubleshoot a ventilator. If my child requires a hospital stay, please don’t treat me as though I don’t know how to care for him and don’t prohibit me from being an active participant in his care. Remember that I am part of the team and my vote counts in all decisions to be made.

Recognize that sometimes all I need for you to do is to listen as I vent my frustrations and fears. I don’t need you to have all the answers, I just need you to care. Make yourself accessible. Provide me with your email address and don’t be opposed to answering my questions in writing. Return my phone call the same day I leave a message. I will only email or call you when I really need your help.

Be honest and forthright with me, but don’t give me the worst case scenario only. Take the time to share all the possibilities and options and give me time to process the information. Don’t take it personal if I seek a second opinion or choose a different course than the one you recommend. Understand that a diagnosis is an opinion, not a prediction and never underestimate the importance of hope.

Because of his disease, my son cannot walk, talk or breathe on his own. Yet my son is a human being with feelings. When you walk into the room,acknowledge my son. Talk to him — he can hear. Look into his eyes — they will speak to you. See his smile — it will light up the room.

Over the last nine years, I’ve had the opportunity to spend a great deal of time in the presence of physicians. I’ve encountered the good, the bad and the indifferent. But, by and large, I’ve had the privilege of dealing with an exceptional team of physicians who have provided the best of care to my son. One of my biggest fears the day my son and I left the PICU was of being abandoned by the people who — from my perspective — put me in this position in the first place. I’ve not been abandoned, I’ve been embraced by a team of very special physicians who have always done everything they can to ensure that my son and I have the best quality of life under the circumstances. They have not only cared for my son, they have cared for me. They have supported me, educated me and guided me throughout this very arduous journey my son and I are on. And for that, I will be forever grateful.

In closing, I’d like to share one particular encounter with a physician that I will always remember:

Early one morning as I was sitting in the chair next to my son’s bed, the PICU intensivist came over to talk with me. What will always stay with me was this physician’s simple act of kneeling down so that he was eye level with me, rather than looking down on me, when he spoke. To most, this may seem like a meaningless, trivial gesture. On the contrary, it is indicative of the special person this physician is. He is unassuming, he is respectful and he is kind. He is a physician who exemplifies what it means to practice medicine from the heart. Be that kind of physician.

Allow kindness and compassion to guide you and, above all else, be a physician who cares.

Well put! I can only hope from the bottom of my heart that they will listen.
To see the beautiful video that was made about this letter please click HERE to get you to the blog Touchstones of Compassionate Care

Thursday, April 29, 2010

He Gets My Vote!



(1). Any use of the phrase: 'Press 1 for English' is immediately BANNED!!!. English is the official language; speak it or wait outside of our borders until you can.

(2). We will immediately go into a two year isolationist attitude in order to straighten out the greedy big business posture in this country. America will allow NO imports, and we'll do no exports. We will use the 'Wal-Mart 's policy,

'If we ain't got it, you don't need it.' We'll make it here and sell it here!

(3). When imports are allowed, there will be a 100% import tax on it coming in here.

(4). All retired military personnel will be required to man one of the many observation towers located on the southern border of the United States (six month tour). They will be under strict orders not to fire on SOUTHBOUND aliens.

(5). Social Security will immediately return to its original state. If you didn't put nuttin in, you AIN'T gettin nuttin out. Neither the President nor any other politician will be able to touch it.

(6). Welfare. -- Checks will be handed out on Fridays, at the end of the 40 hour school week, the successful completion of a urinalysis test for drugs, and passing grades.

(7). Professional Athletes -- Steroids? The FIRST time you check positive you're banned from sports ... for life.

(8). Crime -- We will adopt the Turkish method, i.e., the first time you steal, you lose your right hand. There is no more 'life sentences'. If convicted of murder, you will be put to death by the same method you chose for the victim you killed: gun, knife, strangulation, etc.

(9). One export of ours will be allowed: wheat; because the world needs to eat. However, a bushel of wheat will be the EXACT price of a barrel of oil.

(10). All foreign aid, using American taxpayer money, will immediately cease and the saved money will help to pay off the national debt and, ultimately, lower taxes. When disasters occur around the world, we'll ask The American People if they want to donate to a disaster fund, and each citizen can make the decision as to whether, or not, it's a worthy cause.

(11). The Pledge of Allegiance will be said EVERY day at school and every day in CONGRESS.

(12). The National Anthem will be played at all appropriate ceremonies, sporting events, outings, etc.

My apology is offered if I've stepped on anyone's toes .... nevertheless....


Sincerely, Bill Cosby

Sunday, April 25, 2010

Amazing Strides!

This is our newest project here at The Osero household. We picked up the kit last weekend, yesterday Dan and our neighbor started to put it together.

Here are the completed sections. Now once the weather corporates, we can get it outside in the backyard and put the pieces together. I'm hoping to get it up and in playing order by next weekend as I'm expecting 4 extra kids over on Saturday. It would be nice for them to be able to be outside.

Once it's completed outside I will post more pictures :) Avrianna is gnawing at the bit to get on it and "PLAY".

This morning, despite the 40 mph winds and pouring rain the MS walk still went on. It was very impressive to see the amount of people that still came out to participate. Thanks to all that "Joined the Movement" in awareness for a cure in MS. My team, My New DreaMS, was able to raise $365.00 towards a cure, WAY TO GO!

Friday I received confirmation on Danny's spinal fusion n roding surgery. His surgery is on May 14th at 7:30am so we will need to have him to the hospital by 6am. Dan and I are going to take Danny to Milwaukee the night before so we don't have to get up at zero dark thirty in the morning to get there by 6. So Danny and I are going to twist Daddy's arm to take us out to The Cheesecake Factory for dinner, yummmmm. I'm hoping we will be able to stay at the Ronald McDonald house the night before as it is right across the street from the Children's Hospital. That way we can get up and just go next door. Once we get a room there we have it till we don't need it anymore, so if for whatever reason we need it for a few more days at least there is a room to stay in. Once we know how the surgery is going then we can either go and clean out the room for another family or we can let them know we will need it longer. Danny's surgery is scheduled to be 7-9hrs long with a recovery stay of about 5-7 days. Reality is setting in and my nerves have kicked into high gear. This is going to be the BIGGEST and LONGEST surgery that Danny has ever had. I can only hope that after the surgery he is going to have an AWESOME outcome and better quality of life. He should be able to sit better, have trunk control, and internally his organs will not be pushed off to one side as they are being scrunched right now. Not to mention the catheter for his ITB pump is going to be replaced back up into the base of his neck and properly anchored. Our hope is that we can turn down the amount of medicine that he is getting now to get the same results, if not better.

This last week we had another break through in Danny's therapy. Here's part of his team....Nicole (OT), Kasey (ST), and Rand (teacher). They all came to visit on Wednesday and boy was Danny on his game. We tried a new position for a switch and ........

Danny rocked the house!!!!!

He was so proud of himself :) Way to go Lil amaze me!
I am very excited that Danny has shown interest and control with his switch located in his finger. I am hoping he will still want to "play" after surgery. With the switch being in his hand it won't be as difficult as the head position would have been so I'm going try and continue "playing" with it.
This next week is Spirit Week at Avrianna's school and she is TOTALLY syked about mismatch day, wild hair day, Twin day, and Dress your best day. I will post pictures of her weeks doings.

Wednesday, April 21, 2010

Clinic review

Yesterday was a whirlwind day. Alot of nothing happened, but everything got done. Now that you are totally lost in my mumbo jumbo. It really was a nice day. I got up on time (that always starts things off nice) and got lil man dressed and prepared for the road trip. It's always alil exhausting getting everything for the day ready as with me not really knowing when we were going to be home, we bring everything. Amazingly the traffic was wonderful even through all the Oshkosh construction (I can't believe the city thought is was a good idea to reconstruct darn near every exit, unbearable for them I'm sure).
We made it to his first appt alil early. WOW! I had to chuckle, as you know you've made an impression when at the check in desk is the patient relations woman waiting to talk with you. LOL! It's all good she's a wonderful woman. Unfortunately she got alot of the brunt of Danny's hospital admission woes last summer. I'm glad my "complaining" does make an impact on the quality of service and care these kiddos get. I WILL and HAVE been heard, makes me smile that my opinions and stubborness can go towards some good, even if I don't make many friends on the floor, LOL.
Danny's first "official" Trache/Vent clinic went well. I had wondered how smoothly it was going to go with his lil episode with the trache change. It was so nice as they coordinate the Pulmonary Dr, ENT, respiratory therapist, Trache nurse, and even a dietitian to come and talk with you :) One stop shopping, I like that! They even come to you instead of you running through the clinic, then the hospital, back over the the clinic like a crazy person. The first doc we saw was his pulmonoligst. I had told her about Danny's "great" trache change and my concerns that this is becoming a pattern with him in the spring. Thinking it might be an allergy issue as I had allergies so bad I required shots to get any relief, before I had kids. She wasn't impressed with my theory and went on with her questions and then did his phyical exam. Funny when she was done she says, yeap I think he has allergies. UGH!!!! The circles we go around, but at least this one didn't take to long for us to agree. The inside of his nose is inflamed, his eyes were watery, his right ear is nasty again, he's alil wheezy n more congested and let's not forget the scratchy throat thing with the trache change. Hummmmmmmmmmm thought I brought that all up in the beginning, oh well. The ENT thinks the same thing :) He didn't like the way Danny's right ear is looking and that's even with the constant drops we put in. He's theory is that the goo has change over into something fungal rather then bacterial so he did a culture and we are awaiting the news for something new we can do to help his poor ear that seems to drain puss all the time, eeeeewwwww. The ENT was going to talk with the surgeon that is doing Danny's spinal fusion to see if they can come in and do a "clean out" of his ear while he is on the table. Everyone else pretty much just came in to see him and there was no changes done. But I did get a referral to see an Allergist down there :)
From there we went to his first Dental clinic down at CHOW. His new dentist is absolutely wonderful! I have major dentist anxiety, but she was great not only with him .... me too :) Cudos to mommy and the nurses for GREAT dental hygiene for Lil Man. She was amazed with how wonderful his teeth look. Not much tartar to speak of and he's NEVER had a professional dental cleaning. We would have one of the local dentist's just look at his teeth when Avrianna went in for cleaning, but that has been it. Danny let her look in his mouth and he didn't try to bit her finger off, LOL. It did make me VERY uneasy when she would stick that lil mirror in there as if bit down, UGH. She did her assessment and she is also going to contact Danny's surgeon as 4 (for sure possibly 6) teeth need to be pulled. They were going to pull and do a cleaning yesterday but with the risk of bacteria possibly getting in the blood stream when doing dental work they are making sure when is a good time to do it.....before, during, or after surgery. They also had to contact his doctor in the Center for Bleeding disorders as Danny still has a slow time to clot and we need to make sure that there is no added treatment he will need before or after teeth extraction. I should have an answer sometime today or tomorrow of what's going on. If it can be done before she was going to sneak him in her schedule when we are down there for his Pre-op May 3rd. We'll see how this all plays out.
This morning I had an opportunity to talk with Dr K and go over the seasonal allergy theory. Instead of getting another specialist in the mix and putting Lil Man through a skin test, we are going to increase some neb treatments and add some better allergy meds to see how he reacts. To go through the whole skin test to see what he is allergic to really won't change our treatments with him other then if he needs to have the shots, and if we don't try the other medicines out to see how they work how will I know he really needs the shots. So once again the magnificent Dr K is maintaining another "specialty" with Lil Man and making our lives less chaotic. Have I told you how much we value Dr K, he ROCKS!
Once we got home from CHOW we all went to pick up our new patio furniture and the rest of the parts we needed for the Playset. Dan and I stayed up last night and put together the "some" assembly required furniture which is always fun times. Today I'm hoping we get it all put together and outside.
This weekend is the MS walk so if you haven't and still would like to donate a pledge please click on the link in the upper left of column of the blog and that will get you to my personal page. Thanks for your support!
Also this weekend is the start of Dan's racing season so for all you drag racing buffs stop on out and see him on the fast track :)

Monday, April 19, 2010

Hold you breath

Today has been ONE OF "THOSE" days with it starting up in rare form at 1:30am. Danny was UP wide awake needing some significant suctioning every 30 minutes for the duration of the weeeeeeeee early morning hours into the rest of the day. UGH! He started to get congested late Friday night, where I even needed to hook up some Oxygen to him while he slept. I really didn't think too much into it as we had alot of people over to the house on Friday for a WildTree Party and Danny was such a busy body being one of the stars of the party that I figured he was just exhausted. He has been increasingly getting more n more congested with some wheezing in his right lung. So this morning once the nurse came in I decided to get him into the shower for nice steam vix treatment and then a trache change. Well let me tell you, Lil Man had other things in store for us. Sassy!! He did wonderful with the trache removal, BUT when it came to putting a new one in.......he didn't appreciate it NOT one bit. The poor thing went into a HUGE coughing fit (normally he coughs some with the trache changes) that lasted about 30 minutes. He couldn't catch his breath, not even with us bagging him (breathing for him) and cranking up the oxygen up to 5 liters. Very scarey for awhile around here as we were doing everything we could, but he wasn't responding to it. And the colors he was turning, weren't the prettiest on him. I now his favorite color is blue, but that was getting alil out of hand! Why is it I always hold my breath when he does his? It's about 3:30 and he is slowly batting his eyes and fighting to sleep, I don't know about him but with day we've had I could use a LONG nap. He still sounds very junky and wheezey in the right lung so we'll see what tonight and tomorrow will bring. I've called his pediatrician to let him know and tomorrow we have his Trache/vent clinic in Milwaukee so I can let them ALL know about his status when we get there. I just hope it's a quiet ride down and that there is no funny business with Lil Man while on the road. I will keep you all up to date with tomorrow's appts and his status if anything should change.
Avrianna is TOTALLY excited as we bought her a outdoor playset. So you know what Dan will be doing this week :) We are going to extend it so we can attach Danny's swing on the end of it and they can hang out there together.
Well tonight is definitely going to be an early night for the Osero's. Thanks for checking in on us! Please post a comment or sign our guestbook as we love to hear from you also.

Wednesday, April 14, 2010

Welcome Home Madness

We made it home safely Saturday at 2am, so we ended up sleeping in the RV in our driveway so I didn't have to wake up the kids. Once we got up we intended to let the unpacking begin. BUT as I walked out of the RV in my scrubby clothes, wild hair, and the oh not so fresh smell up drove 4 cars in my driveway. WHAT!!! Well the builder had some people that wanted to look at our house and we had a miscommunication thing going so unfortunately they got to see me at my "finest". It wasn't too bad, they were wonderful people and I got a beautiful bouquet of flowers out of it :) You're forgiven Mike, LOL.
I started my IV treatment for my most recent MS relapse on Monday and today was my last day, thank goodness. The nurse was able to get an IV in my left arm, of course right in the bend (I'm left handed) which they wanted to keep in for the three days as I, once again, was a hard stick. Now I know where Danny got his veins from, sorry Lil Man! Unfortunately the IV blew this morning and they had to start a new one up for today, the last day. After 3 attempts the nurse was able to get on in my right knuckle in between my pinky n ring finger, OMG did that one hurt. But it's done and I'm hoping I don't have to do that again for awhile.
Avrianna is back to the grind in school and she can't wait to get back in her swim suit and go in the pool. I have started to look into signing her up for some summer programs, so she can't say she's "bored" over the summer. But I'm sure once school is out and the pool is up n running we'll be a very busy house.
Yesterday Danny had his follow up for GI and ****GOLD STARS**** across the board. He is finally in a "good" place as GI is concerned, but I did make the doc aware of the up coming surgery to fuse n rod his spine next month which might throw a few bumps in road with GI. As Danny tends to go over board and throw things out of proportion which tends to start with GI shut down when his body goes isn't a dysautomonia fit. I'm crossing my fingers that isn't the case this time. I don't want to spend 70 days of this summer in the hospital like we did last summer. Danny goes in for his Trache/vent clinic and a new patient dental clinic next Tuesday in Milwaukee and then the next week we have pre op with the ortho surgeon and anesthesiologist. Surgery is scheduled for May 14th with a 5-7 day stay, cross you fingers it's not too much longer then that.
Since we've been home the weather has been wonderful so I've been trying to get all my outside weeding and pruning done. It's a month early around here, but I'll take it! Warm sunshine can stay, keep the snow away! It's suppose to rain tomorrow so I'm hoping to get the last two bags unpacked from our vacation and then I can be all caught up. We are having family coming over for the weekend and I have a WildTree Party here at the house on Friday night with family n friends so I'd like to have everything put away.
The MS Walk is on April 25th, boy did that come up fast. If you are still interested in pledging a dontation to support the walk and me please click on the link at the top left of the blog and that will get you to my personal page. Thanks for your support!

Wednesday, April 7, 2010

Let the Cleaning Begin

We had a great Easter down here. We had "the TALK" on Easter about the celebration of Easter n Christmas and how if you believe then the spirit still rings on. I kind of new that it was coming as she is way to smart for her own good, but it went well and she was ok with it. :) Phew~ that part is over onto PMS, LOL

Avrianna Painting eggs with Danny's Supervision

And Danny Sporting his new sassy T-shirt. Appropriate .... don't you think?

Some pics of the kids .....

Yesterday I started to tear apart the condo. I started in the master bedroom not only cleaning but tearing everything out and reorganizing it. Yeah I can't do anything simple :) I really like the way the bedroom is now and I wish I would have put it this way along time ago. But of course I didn't stop there.......I put Danny's bed back by the master bedroom so now I can be closer to him as I didn't like him being on the other side of the condo because I couldn't hear him well enough. So then I put the two beds in (now) Avrianna's room and she has a huge bed and alot more space. I'm exhausted already and I only have the Lanai, and both bedrooms clean. Now off to the the rest of the place. Once all the bags n boxes are out of here it will look like a condo again. I'm so glad we decided NOT to sell this place, I just love it here, and now I have BIGGER ideas for the next trip down for some more sprucing up :) Everything is packed and Dan is putting it in the RV so once I have everything cleaned up tomorrow we'll be back on the road to WI .... all good things must come to an end. BUT we'll be back you can count on it!
This week has been amazing weather wise. I couldn't have planned better weather ,we are all getting a nice tan. We've been hitting the pool just about every day and going out to eat at least once a day, yeah I know real rough life style. It's been so nice being able to sleep in and not to have any plans or obligations to tend to. Again all good thing must come to an end as Monday is going to be complete and utter chaos at my house. Not only to clean out the RV and put stuff away, school starts, piano starts, I have to go into start a 3 day round of steroids (more on that), and I'm suppose to go to a parent support group in the evening. Then doctor appts on Tuesday for Danny, Wednesday for me, and on and on and on.
I got Danny in the pool.....he LOVED it as always!
Danny chilling out with "His Girls". We met the therapist's that used to work with him when we were down here for dinner. We are now good friends! Thanks for coming out to see us Shauna n Becky :)

Right before we left to come down here my left foot/leg and up to mid mid side went numb. That lasted alil over a week but starting on Friday my right arm and hand are numb and very weak, as I can't even pick up a coffee cup and let me tell you typing is pretty challenging. Unfortunately I couldn't start the treatment while down in Florida as the local hospitals won't take a script from an out of state doctor and the local Neurologist couldn't see me till after we were to leave (thanks to WI doc for going to extra step and trying to get me seen down here). So I'll be starting right away on Monday morning, yea more steroids, better go get the next size up for clothing. Grrrrrrrr! It's very annoying not to be able to feel or use your hand n arm and starting yesterday it's getting painful. This absolutly sucks but I won't let it ruin our vacation!
I am planning an having a WildTree Party on Friday at my home. I'm really excited to see what they have to offer for healthy foods. If anyone is interested in coming email me and I can get you the info and directions to my home.
Please don't forget to pledge a dontation to support the MS walk and ME! Click on the link to the left of the blog page and that will get you to my personal page. Thanks for you support!

Tuesday, April 6, 2010

My New DreaMS

Here's a preview to the story I've been working on.

I’ve started a new chapter in my life………A new twist

My New DreaMS!
I hear all the time how I should write a book about my experiences, but I think I already have. It’s here in the blog maybe as not as neat and tidy as a book, but it’s ALL here, so I’ll try to put it all together, my thoughts, and my feelings through this turmoil I call ~My Life. Some of this might sound familiar to some of you.

This is again sparked by another “AHA” moment in my life. A moment that makes you step back, ponder, and reflect. You have a choice, you chose how miserable or content you are with your life. Who’s to say that different is bad and who makes that call, YOU DO. Don’t look back, push forward, and never short yourself. You are your own HERO so keep smiling and laughing, please don’t dwell on the negatives. Weirdly enough the worst will bring out the best in us. I'm a Wife and a Mom to Two "Special" Kids ~ "Anyone can give up. It's the easiest thing in the world to do. But to hold it together when everyone else would understand if you just fell apart ~ that is true strength"

I found myself looking in the mirror wondering, where did I go? What happened to ME? I lost apart of myself, the person I used to be, with being the only primary caregiver to my son, plus I homeschooled my daughter and I still maintained a highly organized homestead. Then my duties were all stripped away at the same time right from underneath me… least that is what it had felt like. Everything that defined me was being taken away. Who was I going to be when it was all gone? I was terrified! Now being on the other side of the track I’ve found that I’ve gained myself back, I still can be those people but now I have time for myself. It’s time to find out who I am going to be like because I define my own self worth.
I don’t ask, how much more can I handle or what more, as I know all too well there is always going to be a challenge around that corner waiting to take me on. So I say “Bring it on” as I can deal with whatever comes my way. Nothing Ventured, nothing Gained and I’ve learned from every one of my life stories.

I don’t claim to have been a saint so far in my life, but I’ve cleaned up my act, learned from my mistakes, and improved my life with all my experiences….but still it feels as if that cloud is hanging over my head. You really could make yourself insane trying to live up to the clichés that you were brought up with, those fairy tales that every little girl dreams of for their life to be…..That happily ever after. Many would look back at my life so far and say, “Boy she got a crap hand dealt to her”, but I have to disagree. I got so much more then what anyone can see on the outside.

“ADAPT ~ to adjust or become adjusted to new or different conditions”. What a strong and powerful word. A word that I have found is the description for my life in so many ways. It’s amazing how one CAN adapt when there is the need, but more inspiring on how one DOES adapt. Adapting is not an easy task for many or even acknowledged by most. I believe it’s the fear of the unknown.

“Life IS like a box of Chocolates…You NEVER know what you are going to get”
Forrest Gump, one of my all time favorite movies and quotes. I always say I have this thing with the “misfit” movies, but really it is reality and inspiring for me. Think about the quote…..they’re ALL chocolates so why is it a bad thing? The perfectly smooth delicious outer coating that looks just like all the others, but not knowing what’s inside, is the kicker. It’s what you don’t see. The surprise of what’s inside. What are you going to get? Can you handle it once you get that chance to see or are you going to want to put it back? Simple right, but unfortunately it’s not that simple and many can’t deal with what they get. Just as the chocolates left behind untouched do to fear & anxiety so are the ones left behind with the dents on the underside just so someone could sneak a peek and walk away, such is life’s expectations. There ARE things in life that some people can’t handle, that is laid before them to deal with. So I believe the saying “You don’t get anymore then He thinks you can handle” in reality is far from the truth. It’s up to YOU if you chose to except the responsibility to adapt, if you didn’t get what you had hoped for. Personally I LOVE chocolate, always have, so it doesn’t matter to me because in the end……I still got my chocolate.

I sit here waiting to go into a 2 hour MRI because of a relapse with my MS and reflect back on the last 6 months of my life. I am NOT the SAME person I was even 6 months ago when I was first diagnosed with Multiple Sclerosis. If it was only as easy as I had anticipated. In such a short amount of time there has been so much “tragedy”. How does one change so much, so fast? Honestly I can say even though 2009 was one of the hardest years of my life, ranking right up there with my sons first year of his life, it was a year that had good change too. I had to deal with the construction of our new home, my son becoming deathly ill and spending over 2 months away from my family making some very difficult decisions, missing out on my husband’s best friends wedding, and having to adjust to living a life with MS.

I’ve once again found something deep inside myself that I never thought I had. At first when you see what’s in the inside, sometimes you just want to put it back and run, or turn the other cheek, live in denial. I was faced with some pretty hard events ones that challenged me to my inner core, not to mention scare the hell out of me. But I’ll still try to keep a smile on my face, keep on keeping on, and live the rest of my life happily in the moment rather than grouchy and dwelling on the bad. As you never know when or what challenge may be presented to you the next day.

“Enjoy all the little things in Life….for one day you’ll look back and realize they were the Big things.”
“My New Dreams”
What is supposed to happen now? Where are the emotions supposed to go? Why did this have to happen? How am I going to be able to go on? These are questions that really will never have a straight answer or a right one for that matter. We live life as well as we can and hope for the best, but for some of us there is no best. At least that is what I had thought when my life was at the lowest point it could have.

Your life as you have dreamed has now turned into this horrific nightmare, and you are hoping that someone, anyone, will wake you. You feel numb because all the emotions soaring through you are too overwhelming to except. You are listening to everything that is said, hoping that there is a glimpse of good news that might get you through that day, but all you hear is words. Nothing seems to make sense or to be right. You sit and wonder about all the dreams you had made and grieve over them because they were the life you had anticipated and now the future scares you to no end. My dreams died!

No one asks for this, but you become one of the "chosen ones". The ones to love, care, and advocate for our children unconditionally. Is this an Honor? Most days it is but honestly there will be some days you will feel cheated, frustrated, and burnt out. The role of a "mom" switches to become someone that is so much more. You almost have to lose part of who you were to become this "experienced caregiver". I am a better person now having to go through all this turmoil, but in the beginning I wasn't sure I was going to be able to be the person that these little bodies would need to survive.
As a parent living with Multiple Sclerosis, that has a child with a hereditary blood disorder and another child with severe brain damage from birth, I always kid about becoming a nurse without the degree. It's amazing how one can adapt when given a need.

Our story starts just like the movies. It was a cold and windy October morning and 8 weeks before my due date my water breaks at home after my husband had already left for work. Unsure and scared of what would happen next I was taken to the hospital to do monitoring and check to make sure the lungs of the baby where ready if delivery was going to happen that day. Once all the tests came back that the baby was indeed “ok” the doctors allowed labor to continue. The whole intimate delivery that you were hoping to have with your husband was totally thrown out the door when you have a premature baby. There were SO MANY people in that room, I believe there were 11 people, a team for me and a team for the baby, as we all knew that there was a potential of medical necessity when you deliver a 32 week baby. There was a sigh of relief when I heard it’s a girl and then her wonderful cry. Unfortunately my longing to have her set on my chest after delivery wasn’t an option as she needed to whisped away to the NICU. My beautiful little girl was born and after being in the intensive care unit for 6 weeks to learn how to eat and to teach us how to live with a child that has a blood disorder called Hereditary Spherocytosis, they released her into my care and home we went home. All night I sat and looked at this little girl that was going to require a lot of care and wondered, how could the doctors send her home with me? Having to adapt to her medical diagnosis, ongoing blood draws, and dealing with a jaundice child….I thought I had known it all, boy was I wrong.

Gambling with the fact that our next child would have a 50% chance of having this blood disorder we went ahead and tried for another child, not wanting our daughter to be an only child. We were able to get pregnant right away, which was a HUGE surprise to us as I had thought it would take awhile, as it did with our first. Then the shock hit because I was dealing with being pregnant and having a 6 month old baby that was VERY clingy and requiring a lot of care and attention. I had called this pregnancy my “planned oops” because we got pregnant so soon without having to do any of the strides we needed to do to get pregnant with our daughter.

After a hard and difficult pregnancy the doctors performed an amniocentesis and ultrasound to make sure my sons lungs were “ready” and the next day we decided to induce our labor 3 weeks before the due date. It was just before Christmas so we thought we would have enough time to be home for the holidays. The labor didn't go as smoothly as we would have wished and our son delivered fighting for his life as the doctors performed CPR on my son at the bedside. Day after day we were hoping for the best, but were receiving the worst. We were told he had sustained head trauma during delivery and more test would need to be performed to see at what degree the damage was at. Remember this was a holiday week so things didn't move as fast as we would have hoped for. On Christmas morning, the day of celebration and family, I sit with this little boy clinging to life wondering what next and what did this little being do to deserve this. I was told on that holiday morning that it didn't look good, if he made it to his first birthday it would be a miracle, and I was to prepare to take him home and make him comfortable with the time he had left. He would NEVER walk, talk, feed himself, or communicate is the bomb that dropped over me on this wonderful holiday season. How is a person supposed to act Sad? Mad? Happy? Guilty? This was supposed to be a happy time. My son was still here so why am I not happy? Nothing could be said or done could make me feel or for this to be better.

As I look back now I find those were all feelings I needed to go through to become the parent that these children need. You need to feel everything to possibly understand it. You will never lose the feelings of grief, frustration, and despair but you learn to enjoy what you have, not regret what you weren't given. My children give to me and anyone else who comes in contact with them something that no other can do an appreciation of life and a new dream.

I have learned in this short time there is a purpose to all this. In myself I have found to be a better person looking at the good and living life day to day to its fullest. Life is so unpredictable and I was naive to that. I have met some wonderful people and gone through things I would have probably never had to endure all because of these two wonderful, beautiful, loving children. I make my life the way it is, I chose to become a better person, and I will live on to keep the legacy of my children alive.

What gets me through life's trials and tribulations is that I am not alone in all this there are people out there that need my help and understanding to get through their day. If I can be someone else's ray of hope then to me this is all worth it. In the end I will survive and everyone will know I am and always will be a parent of children with special needs.

“Life is NOT measured by how many breathes we take but how many moments take our breath away”

You wear a suit of armor after you see your child (as they put it in the medical field) “Code Blue”, which means to stop breathing & heart stops/slows down, right in front of you. You realize how much you take, a breath, for granted… something you just assume will always be there, especially in such a young child. Once you see the organized ballet of strangers working so diligently to bring your child back, you understand exactly how precious life is and how fast it can be taken away. I am forever grateful to the dedicated team that allowed me to have more time with my Lil Man and to be able to make more memories with him. I will protect my children with a different sense of life once you experience something like that. I routinely still have to give my kids a kiss, say I Love You and see you in the morning at the end of my day to give me that sense of security that I WILL see them in the morning and IF something should happen in the night they would know I LOVE them. In my sons earlier years I didn’t think he would have gotten this far as he was so ill and with the grim outlook I was given at his birth. One of the hardest decisions of my life was when I put a DNR status on my son, which doesn’t mean Dept. of Natural Resources in my world…….DO NOT RESUSITATE is what DNR means in my world. He struggled for every breath every moment of the day and the doctors didn’t give us an end or fix in sight. I had to step back and ask myself who am I doing this for? I would have been keeping him here for me, and that wasn’t fair to allow him to suffer everyday of his life just so I could have him in my arms. I had to be selfless and not selfish.
Thankfully we chose a different team and facility to help care for him and or The DNR code has been lifted as his quality of life has improved so much and he is back to full code status. There comes a time with a chronically ill child where you have to change your way of thinking from quantity to quality, to make them comfortable and happy with the time that they have. You have to assess what is the right thing for your child and family and make the decisions to the best of your ability as there are no books or guidelines to say if you are doing the right thing with children like mine. You find that even though there is a means and a way in the medical field to “fix” something that it isn’t always the right thing to do. What heavy weights we carry on our shoulders…. Did we do the right thing? Is there more we should do? When is it enough?

Just recently I started to put the pieces of the puzzle together with my son’s delivery. I had read an article that a doctor had shared about his research on children with Hypoxic Ischemic Encephalopathy (meaning lack of blood and oxygen to the brain). Which is the main reason my son has sustained brain damage, now it is trying to find the reasons, WHY? I didn’t really research it as I thought it really didn’t matter how it happened because I was doing everything I could just trying to maintain all the issues that is happening after. Once I read this article on umbilibal cord prolapse it was like a flash back, THAT’S IT. I felt a sigh of relief having the “name” of what happened to him but then this awful feeling of sorrow overcame me. I had this ugly burden that I held onto since his delivery, the secret guilt that I did this to my son, my body hurt him when it was my duty to protect him. Could I have done something more or demanded something sooner, as all I was getting from the medical profession is that they didn’t know what happened and the way they made me feel afterwards I felt devastated. With reading this I could acknowledge within myself that it wasn’t my fault, what a weight that was lifted, almost a gift. I was told I should be a better person not a bitter one, but after you walk in my shoes for just a day then they’ll be able to understand that there are some things I am still VERY bitter about but others I’m so much better.

“The Plan” is something I require to move on and maintain with my family’s well being, but I have an acceptance that the plan will change. It’s amazing how your attitude and way of thinking changes as life presents itself. I said I’d never have a tracheotomy done and I fought it for 5.5 years with my son. It was an agonizing decision to make as the time drew near, until it was time to make the decision. I was very disappointed in the specialists for putting the fear of god in us with the trache and giving us a false impression that it meant end of life. On the contrary because the trache my son will live longer and have a better quality of life and I only kick myself now for not doing it sooner. As long as I see the fight in him or my daughter I will continue to fight for them.

My children’s pediatrician is not only their doctor to us, we see him as part of our family. I truly believe that my family wouldn’t be where we are today without his guidance, understanding, dedication, and “Invested Interest”. He takes on the ones that no one wants… the broken and the difficult. He shows compassion and respect to our children where there is a lack there of with them, even in the medical profession. He’s not afraid to push the envelop with my son when there is a need and he gets the BIG picture with all of issues that are going on. There is an unconditional “care” he has towards his “kids” that I could only hope other doctors could obtain. Fortunately because of him the bar is held high and we are not satisfied with anything less. He has left a permanent mark and we are forever thankful he is in our lives.
“Treat the disease you win some you lose some but treat the person and you’ll win EVERY time!”

My MS Relapse
What a reality check the relapse of my MS had been for me. Since my diagnosis, the symptoms of MS really hadn't affected me other than just an increase in fatigue and some added aches, but you all know me I’ll keep on keeping on. During my sudden relapse my life went into a sudden free fall. It's amazing how fast your life can end up in a tail spin OVER and OVER and OVER again and you wonder when you are going to hit the ground. Just when you think you've been through the ringer enough in your life, BAM another mountain you’re climbing.

I look at my son’s face and I know we are climbing this mountain together more then I had ever thought we would. My New DreaMS !! I am suppose to be the strong one, pulling him through and being his only true one given in life, but the relapse scared me to the depths of the deepest hole. How long would I be able to really BE THERE for my children? My biggest fans :) I love them more then they'll ever know.

I had thought I would be me who just happens to have MS but lately I’ve felt like MS. Once again I have been rocked to my inner core with wondering, "Can I do this". I truly am scared to death to even comprehend "What else" could my family endure. I know this was really my first experience with the hard core symptoms of MS but I can't help finding myself drift to those questions of WHAT will really be taken away from me with this disease and WHEN. I'm finding out you'll never know till it happens with this disease. Maybe this would be so much easier to deal with if I was older in age or maybe if I didn't have those two blue eyes in the wheelchair looking at me, depending on me for EVERYTHING. I had someone ask me early on when my son was born what was I truly afraid of.....if he should die first or if I should die first. That was a no brainer....ME first, as I knew he would be taken care of as long as I was around. With the rapid reaction to my relapse all I could think of was, I might be around but now I might not be able to take care of was killing me. Then I got a grip and understood that there are a lot of parents out there with a disability that are doing an awesome job so I should be able to if that is the path my life starts to head towards.
I do find it disturbing how many friendships/relationships dwindle when you are going through a rough time. The phone just stops ringing and the people just stop coming over. You feel more lost and alone then you ever imagined, as if there is no one you can talk with, cry with, or even rejoice with. Many can’t see the rejoicing when there is a significant chronic illness, but there IS, the sun rises every morning, the moon sets every night, and life still goes on even when you’re “sick”. Try and stay away from toxic relationships that will add stress to your life, no matter how hard it may be. I found our lives to be more peaceful and loving without the drama from family and friends that didn’t get it. Even though it was one of the hardest things to do, during the hardest times in our live, we had to step away from relationships that were making our lives more miserable. It’s their loss really.

Who wouldn’t have “fun” with our dysfunctional family, the 3 D’s ~ Disorder, Disability, and Disease. We now have an extended family of other parents with special needs children, doctors, and nurses that help care for and love my children. Home care nursing is something I swore I would NEVER have as “I could do it” and I had a hard time trying to find where the “mommy” duties stopped and the nurses began. Now that I look back I was so wrong, and I can admit it now. I lost myself in all the cares, I was no longer the person I used to be. I was consumed with ALL my duties. Now that I have let go some of them, but don’t worry I heavily over see EVERYTHING, I can have some ME TIME.

Today is a NEW day and they are working on cure for MS everyday, I can only hope I will be able to see it in my life time. Until then I am going to work hard at making my life choices better and try to fight this! I have done some research on what kind of diet I can do to improve my symptoms. I will continue to take my medicine and treatments when things get bad. I am me who just happens to have MS, I will NOT be MS!

I hear all the time, I know someone who has MS but you'd never know it. I hope I can be that MS person that others talk about, but please understand some days it's all a front and I am just hurting inside. I can't be everything, every time, and I will need help not only physically but emotionally. You my dearest friends and family will be my UP. Please pick me up when I've fallen on the ground. Please pick me UP when my emotions have just crashed. I know I can count on you to be my support and sounding board, but PLEASE don't pity me. I will be strong!!