career options with a special needs child

I am Nicole Ott, a 2009 graduate of the UCF Bachelor degree program in Sport and Fitness. I would appreciate a few minutes of your valuable time to ask for some guidance. I have reached a point in my professional life in which I am at a loss on how to proceed.

I am not sure if you remember me from four years ago but I was the student who in her last semester pushed for early completion due to being nine months pregnant with her third child. I guess you could say I’ve always been a multi-tasker and embraced my circumstances to push forward with a deeper purpose. I distinctly remember having to write out and present short and long term career goals in one of our classes and upon graduation, I steered right towards those goals. The hands-on approach of your program, along with the detailed instruction gave me the confidence to pursue my dreams. With the support of my husband and three amazing children, I took on entrepreneurship and successfully ran my own Personal Training business in the Kissimmee/South Orlando area. Despite only working part-time hours in order to be with my family as much as possible, I still managed to appear on a radio show and contributed to a couple published fitness articles. Things were going very well and I loved every minute of it.

Life however, decided to throw a major curveball and my dreams had to come to an abrupt end. In June 2011, our fourth son was born with a rare genetic disorder which would make him lifelong dependent on a ventilator. To say that life changed in an instant would be an understatement. Without giving it a second thought, I dissolved my business and threw myself into the medical caretaker life that I would have to lead from that point forward. When not directly taking care of my son (or my other three children), my time was occupied with medical research, respiratory care studies, fighting insurance issues and medical advocacy, and learning sign language. It’s been a little over two years now since taking on this new life path. And while I am happy to report that our son is stable and acting like a typical two year old, I am personally now really struggling with the question of when, where and how to pursue my career again. Having no reasonable child care options for a medically complex child like our son, his care solely depends on my husband, my mother-in-law and mostly me. Part of me has accepted that I will not be able to work again until our son goes to Kindergarten and that even then, three years from now, his needs will still be the priority. At best, my work schedule would then have to fit his school schedule and in the fitness industry such a 7a-3p schedule is very hard to achieve. Another part of me though is the fighter who never wants to settle, who doesn’t want to wait another three years, and who wants to prove to her other kids that no matter what the circumstances, you can find a way to make your dreams come true. I have been out of the fitness industry for over two years now and I feel some sort of a disconnect. I have gone through tremendous personal change and even my entire outlook on life has changed so much that I am not sure where my original career goals fit in anymore. In a different life I have this Bachelor degree in Sport and Fitness and I have experience running my own Personal Training business but somehow that all seems just theoretical to me now. It’s like a void that hasn’t been filled for so long that I’m not sure how to get that passion for the fitness industry back. I know it’s still there somewhere in me, I just don’t know how to reach it and apply it.

My apologies for taking up so much of your valuable time. I am not even sure what it is that I am trying to accomplish here. I guess I am just reaching out from one professional to another hoping for some guidance. Maybe, despite of or because of my circumstances, there are opportunities out there that I haven’t considered, or maybe a unique idea could come out of this that could lead to a new outline of short and long term goals.

Thank you for taking the time to read this email and please know, your program not only opens doors for your students but also opens their minds to the many opportunities that life has to offer.

In gratitude,

Nicole Ott

New Year, New Outlook

Who would have thought a year ago, heck even 6 months ago, that we could stop focusing on Wyatt's needs as our primary daily worry.


The hiatal hernia repair surgery in November of 2012 transformed this kid in such a positive way, I sometimes have to take a second look to make sure the hospital staff didn't accidently give us back someone else's child. Recovery was drawn out and argumentative as usual and we had some pump feeding issues for a little while post-op but it was because of these same pump feeding issues, that we were so sick and tired of, that we dared to take a chance. Every doctor we had ever met was always so concerned that Wyatt would lose weight, they didn't even want to try weaning him off the pump feeding, always stating that his body already uses so much energy trying to breathe. If they knew more about CCHS they'd know that his body, well specifically his brain, really could care less about breathing ;) Knowing our son's personality though of readily taking the easy way out or playing the sympathy card when given the chance, we knew that if we stayed on this path of scheduled pump feedings he's never learn to eat on his own. So we first switched him to only a continuous overnight feed making sure he got all his daily calories he needed, and then allowed him to eat whatever he wanted during the day. Based on how much he ate during the day, we'd lower his pump feeding volumes at night. Wyatt did ok with that method but still had days where he was simply too lazy to even try to eat and since he had all his calories over the course of the night, he wasn’t hungry for breakfast and he often had stomach pains from the pressure of the pump feeds. And frankly, hooking up a pump feed every night and making sure it doesn't come undone just to leave a big mess all over the place was getting old very fast. So we decided, what the heck, we'll try it for three days without any pump feedings and see how he does. Damn I wish we would have had the guts to do this a long time ago. By day two he had discovered his love for food and all we had to do was encourage him to drink sips of water between bites. That was the end of the pump feeds. Ironically it took us blindly giving it a shot against doctor’s recommendations and simply trusting in Wyatt’s abilities to realize he didn’t have feeding issues in the first place, he has saliva production issues that caused him to get frustrated while eating. He doesn’t produce hardly any saliva and therefore food gets stuck on the roof of his mouth easily. No doctor was aware of that or had even considered that to be a possibility. It was always assumed that CCHS also meant oral motor skills delays. We always knew his skills were there but couldn’t figure out why he wasn’t progressing in the oral feeding department. A few sips of water in between bites, problem solved! That’s what I hate about having a medically complex child. You start to over think everything and treat everything as a medical issue first before using your common sense. Well, lesson learned – simplify! Not only did the surgery lead to him now eating independently (NONSTOP), Wyatt is now also SLEEP-VENTILATED ONLY!!! I never thought we’d get to this point but again, it took having the guts to trust his abilities! For those of you who do not have a child on a ventilator, I’m sorry, there is no way I can explain to you what a difference that makes. Sure, we still have to take his equipment with us everywhere we go and we are still too nervous to try to let him sprint while driving in the car but we can pick him up and go in our backyard or upstairs now and leave his equipment on the chart. Since being able to come off his leash as I call it, he’s made huge progress crawling like he’s racing someone, crawling up the stairs, and standing up and walking assisted. He knows his limitations when he’s hooked up to the vent and is now able to take full advantage of his freedom when he’s sprinting. He still throws his tantrums and passes out so we can’t leave him out of sight but him being mostly independent of the vent during awake hours is a huge relief on all of us. And now that he’s vocalizing more making up his own language with the weirdest sounds, you can often audibly tell where he is at which is also something that wasn’t possible before. I swear he can call whales and sea lions, imitates donkeys even though he’s never met one, and plays like a dog by still picking up balls with his mouth sometimes. And the eye contact he gives you is so hard to resist. He’s a character, always ready to entertain and he so knows how to wrap people around his little finger… Last year we were not able to enjoy these moments because he always had some sort of medical issue and threw so many blue spells we could never relax. Today, he still throws 1-5 blue spells a day but we’ve learned to “ignore” them and only observe from a distance as they are now mostly attention getters and when hooked up to the vent, he usually recovers on his own. He’s learned to accept car rides as normal routine and rarely throws a tantrum in the car anymore which has allows us all more freedom and we are comfortable enough to not have an adult sit next to him in the backseat anymore. Heck, we’ve gotten so in tuned with his routine and cues that we don’t even hook up the Pulse Ox or CO2 Monitor to him anymore unless he’s sleeping or seems a little off. Overall, 2013 so far has started to be much more relaxing than 2011 or 2012. Let’s keep our fingers crossed that it will stay that way, at least for the most part.

 

Life as I know it now

I know, I know. I’ve been really slacking on writing blog posts. To be honest, I simply didn’t feel like talking about Wyatt anymore. It’s such a bitter sweet tool. This blog started out as my own personal therapy session. I could put in writing any and every thought that crossed my mind. I didn’t have to hold back and it allowed me to process all the ups and downs of this thing called CCHS. While this blog certainly has served its purpose and today I even hope that this naked truth of my emotional roller coaster ride can help someone is this world, it has now become a tool for me that can also easily backfire.

When Wyatt was first diagnosed, all the other families affected by CCHS told us, the first year is the hardest and then it gets easier. What no one told us was why. So here’s my viewpoint so far having surpasses that one year mark by a couple of months now. I think the term easier is misleading. Having a healthy infant is hard. We have to get to know that new person, their likes and dislikes, their personality and what life changes that will entail. As exhausting and sometimes isolating as it may be, every new accomplishment of that perfect little human being seems worth a celebration and we can’t wait to see when the next milestone is going to be reached. Having kids turns us into this whole new person who almost overnight becomes less concerned with their own personal goals and suddenly feels the urge to tackle the world in the best interest of their child. Having any subsequent children, we start to have less and less time focusing on all the little accomplishments and shift more towards tackling the bigger battles such as what school to choose. Now consider having a child like Wyatt in the mix of that already challenging balancing act. Initially when we got the diagnosis, it almost felt like a relief to me because at least the medical problems that remained a mystery for so long finally somewhat made sense. Somehow putting a name to it made it all just a little bit easier to deal with. While waiting for several weeks for the test results of course, I had already done my research on what such a diagnosis would mean and what future medical options we might have. I felt prepared even though my mind played tricks on me every second of every day wishing for a medical answer yet hoping I’ll magically wake up from this nightmare. Once we got the answer that we were and were not hoping for, I went even further into overdrive mode. Now the practical aspect kicks in of learning everything there medically is to know so that I can adequately take care of the daily needs of this special child. There wasn’t really any time to reflect and process what’s going on. The complete load of that freight train of emotions hit me much later after we were already settle in at home for several months. One day something seemingly unimportant just opened the flood gates. Suddenly I realized, to no fault of my own but simply out of necessity, I was so busy juggling the medical needs of this one special child and chasing the next hopeful treatment option that I didn’t really even know who that person who’s living in our house attached to all the medical equipment was. I suddenly realized how much time taking care of that one special child has led to me missing valuable time with our other children, how much we all had to give up to be where we are today. The first year is the hardest not because of all the medical reasons. Sure, those are challenging and come with their own up and own emotions. But what was the hardest for me was to take the time to grief the loss of my hopes for my family’s future and accepting what is, the unknown. I had to learn to accept that doctors are not the heroes with the magical answers and cures like most of us were taught when we were young. With such a rare and not well understood diagnosis with an unclear medical treatment plan, doctors don’t know anything. In fact they are even scared of your child and we as the parents are all alone in making the right medical and non-medical decisions. Looking that fear in the eye and believing that the unknown and the loss of control are not my worst enemies, that took time. Hell, I still fight the battle in my own head sometimes.  That’s what makes the first year the hardest. The first year was very isolating because we were just treating water and didn’t even realize that we were losing  a part of ourselves. If I was not dealing with insurance, medical equipment or yet another medical challenge, I was busy contacting every researcher and other affected family. While it is great to have those contacts and that support system, I’ve also noticed that because of my personality it can become a downward spiral. Not even the most experienced specialists nor the CCHS families who have been living with this condition the longest have clear cut answers. Just like a healthy infant, each child is so vastly different. I had to learn to stop looking for answers and stop looking at my child medically and stop over-analyzing every move he makes. Instead I had to pay attention to who he is as a person and how we as a family could repair that unintentional disconnect that slowly marched in between us over the last year. In my darkest days I realized that I will not be a good mother to any of my children nor a good wife to my amazing husband if I only focus on life with CCHS. Since I am an all or nothing type of person though, that meant I had to let go of doing research and making treatment plans which is the complete contrary to my hard to break habit of always having to have a plan. It takes a huge amount of effort for me to simply live in the moment and not make comparisons to the way things should have been. Coming to that realization and taking that dive into the deep also known as leaving my own comfort zone, that’s what made the first year so incredible hard for me.

I can’t say that I have succeeded in putting that realization into action just yet but it’s work in progress. This is the reason why I haven’t been posting on here much anymore. I have to make the conscious effort to get to know my four children all over again for who they are today. I have to ask out loud for quality time with my husband so we can get to know each other all over again in the middle of our new life together. I also have to speak up and demand time to myself so I can figure out who I am now instead of trying to chase down who I used to be. So here I am making the first step.

To all my friends and family out there: I know you care and I am sorry for previously turning down your efforts to help. I’m not good at asking or accepting help, nor do I even know exactly what kind of help I could use. I will work on that. It must be difficult for someone on the outside to know what to say or do. Sometimes the best help is to simply be there. Even if it hardly ever works out, please don’t give up on offering to include me or my husband in get-togethers. Don’t worry about how much effort it would be for us, suggesting a play date or a cookout is still a good idea. Discussing parenting or career issues is actually nice because in the end we all face similar difficulties.  So let’s face the world together again!

stoma reconstruction surgery with a surprise find

On Thursday, July 12^th, Wyatt was admitted to the hospital for a scheduled stoma reconstruction surgery to remove the access skin growth around his stoma site and to close off the additional stoma opening. Now post-op and sedated in the PICU, we are glad we had the surgery done now rather than later. It turned out that right under his vocal cords there was scar tissue that had grown from the inside and up his airway. That scar tissue had gotten so big that it was blocking any air from going through around his trach. Aside from the obvious concerns that this blockage could have caused a sudden serious issue with trach changes one day and ventilation by mouth may not be possible, this find explains why Wyatt used to be able to vocalize much better several months ago and lost his ability to breathe through his mouth and nose almost completely. We assumed it was due to his trach upsize, meaning a wider trach would leave less room for air to pass by his trach through his vocal cords and out his mouth and nose. While this unfortunately means that the surgery ended up being a completely stoma reconstruction and therefore has to be treated like a new tracheotomy in regard to recovery, finding and removing this blockage opens up the possibility again of better vocalization and therefore, less frustration and possibly even less blue spells for Wyatt. I’m not betting money on the last part but simply hearing him snore when he’s sleeping now brings tears to my eyes. Snoring means he can make noise. I’d give anything to hear him laugh or even cry and I will break all parenting rules and let him curse on occasion if he will just learn to talk.

Looking down his airway during surgery, this is what they found... Don't worry, I covered up the gross pictures of the actual reconstruction portion of the surgery.

bye, bye nursing

So after numerous discussions over the weekend, we cancelled nursing for good. We might have to revisit that dreaded idea again when we decide on daycare for Wyatt but that's still 2+ years away. Instead of being upset or frustrated, we have always been excited when a nurse would call out sick or the agency couldn’t find coverage. I don’t think my personality is made for home nursing and when I’m stressed Wyatt is stressed. It’s just a downward spiral. I have always noticed a night and day difference between the morning hours for example when we had a nurse and the afternoon or weekends when we didn’t have a nurse present. Not only does the nursing agency/FL Medicaid put restrictions on what Wyatt can do, where he can go and when but I recognized that having nursing made me treat Wyatt differently, too. I don’t want him growing up defined by nursing. I don’t want him to start to believe that he can’t do certain things or that he needs constant supervision to do anything. He will know his limitations and may have to make modifications but I want him to know that he can do anything he want to do, whenever he want to do it. He can and should be just as independent as his brothers and I cannot stand for anything less. We haven't had a nurse since Friday and our entire family including Wyatt has been so much more relaxed and acting normal around each other again. No more house arrest for Wyatt (stupid FL Medicaid rules). We took Wyatt grocery shopping and to Grandma and Grandpa’s house. We took him to the park/playground and let him swing and go down the slide for the first time. We sat him in the kiddy pool on our back porch. We have been successfully sprinting him (taking him off the ventilator to let him breathe on his own while awake) several times a day for 30min-1hour at a time. And the best, most amazing and reassuring part is, we did all that without a single breath holding cyanotic episode. Just since Friday, since we haven’t had a nurse, he has even greatly reduced the number of episodes when it’s nap time and now settles down on his own and even just. That is so huge, I can’t even find words powerful enough to explain how big of an accomplishment, how big of a difference that is. This boy just needed his freedom and get out into the world. No more explaining to nurses and the nurse case manager why/when we spint Wyatt and why we don’t have an official doctor’s order for it to cover liability for the nursing agency. No more explaining why we won’t feed Wyatt exactly 150mL every 3 hours on the dot. No more making endless phone call to update everybody and their brother on Wyatt’s latest appointment schedule, new orders and discussions with doctors. No more overanalyzing every little fussy moment or changed ventilator need as being medically related without considering normal growing discomforts. No more treating our son like he’s sick and holding him back from doing normal growing up kid things. No more of that. What Wyatt does, how and when is back to being a family business only.

I wasn't sure of the cold water at first but boy, splashing everyone sure is fun.

I better hang on to dear life, Mommy might get too excited.

Crawling is optional when you can just stand?!

Better not drop me. I'm hanging on to my vent circuit just to be safe.

upcoming stoma reconstruction surgery

Wyatt’s stoma reconstruction surgery is scheduled for July 12^th and will require a 3-5 days post-op hospital stay.

The enlarged skin growth visible in the picture was caused by a suture that cut his skin when he had his tracheotomy placed in July of last year. That tear in his skin created a larger than intended stoma meaning there is an extra opening behind that skin growth. ENT refers to it as a panhandle shaped stoma. In other words, a normal stoma is supposed to be round but Wyatt has a figure 8 stoma. During the reconstruction, they will ventilate Wyatt via intubation to get a clear view of the stoma. They will try to save as much of the good tissue as possible but will remove the excess skin growths and tighten up the stoma to make it round. The expected post-op procedures and discomfort level will be equal to having a new tracheotomy. Sedation will most likely be necessary for a few days post-op to prevent numerous cyanotic breath holding episodes caused by discomfort.

While we certainly don’t want to put Wyatt through another surgery, the enlarged stoma has only gotten bigger as he’s been growing. The air leak is getting worse making it impossible to know how well ventilated he truly is because we can’t be certain how accurate his daily reading are, especially his CO2 readings. The skin growth has gotten bigger over time as well and is often irritated. He has also been decannulating more frequently doing simple things like moving his head or coughing. We were giving it time to let him get bigger and more resilient but it’s simply not safe anymore and needs to be fixed. Our hope is that after the recovery period is over, he will be a lot more comfortable and we will be able to assess his ventilation more accurately. Once the air leak around his stoma has been minimized, he should be able to vocalize more again as well like he used to – fingers crossed.

seriously???

Alright CCHS family, I have to vent about my home nursing dilemma and I’m hoping you guys might be able to offer some advice. I’m so frustrated with nursing lately that I went through phases of anger, guilt and holding back tears today. Quick backstory.

When Wyatt was discharged from the NICU at three months old back in September 2011 we went home with nursing. We had a few good nurses but also had some experiences we could have done without. After some issues with the business ethics of the first home nursing agency, we switched to a new agency in November in a last ditch effort to give it another try. Even though the second agency was providing far better coverage and better overall service, by December we still went from needing a one week break from nursing to cancelling services altogether. And then came the Chicago visit. We were given the speech by doctors that by declining nursing services we were not acting in our son’s best interest and were not providing optimal care and safety. So after some soul searching we decided that maybe due to the negative business experience with the first nursing agency we didn’t give the second agency a fair shot and we agreed to start nursing back up at the end of February.

Well, here we are now and we are back to the same issues that bothered us about nursing from the very beginning. Aside from having a hard time finding good nurses who are willing to learn about CCHS and who can handle the unpredictability of this disorder, we’ve always felt uneasy about nursing for various reasons. From December to February our whole family seemed so much more relaxed and together without nursing. The obvious bumps in the road that come with home nursing are the loss of privacy and having someone else take care of your child. That never sat right with me and probably never will. My husband and I are both very involved in our son’s care and we don’t see it as burden. Of course, there are days when we get frustrated and we’re tired but we don’t consider it to be any more challenging than raising any other infant or toddler. We have always approached Wyatt’s care as family affair. In fact, one of my conditions of agreeing to return to home nursing was that we do not live our life depending on nursing coverage to make any plans such as doctor appointments, and that I will no longer make several phone calls each week to keep every case manager and nurse informed of ongoing treatment or medical order changes. I absolutely hate having to ask for a doctor’s order for everything we do with Wyatt. We made it very clear to the nursing agency as well as every individual nurse that comes into our home that either myself or my husband will always be there and that the nurse is only present as a second set of hands, and only in rare and brief occasions will the nurse get to take over complete care. Well, based on recent conversations with our nursing case manager, our outspoken and very involved approach seems to be limiting the agency’s selection of nurses that they consider a good fit for Wyatt’s case. Another recently discussed issue has been when and where a nurse can accompany Wyatt. Since our private duty nursing coverage is paid for through Medicaid, their guideline state that a nurse can only provide care within the home and to/from doctor’s appointments. We are expected to notify the agency every time we are taking Wyatt anywhere outside of the home and ideally the nurse would be cancelled in advance for that shift. I basically told them that these restrictions make home nursing pointless in Wyatt’s case. We the parents provide his care and having him on house arrest is not helping his social, physical or mental development. If we can’t have nurses sit with him in the backseat of the car for example when we want to go to the park, then what’s the point of having nurses? It’s hard enough living around nursing shifts but to have to ask for permission when and where I can take my son is just an unacceptable flaw in the Medicaid system. I want Wyatt to grow up to be independent and all he is learning so far is what he can’t do. I’m afraid eventually that is going to lead to him believing that he can’t do certain things or at least not without help. That’s bullshit. That is not how I raised any of my other kids and Wyatt will be no different. To top it off, our daytime nurse has been pushing my buttons lately by simply sitting out her shift at our house. She was great in February when she first started with Wyatt but has since lost that original enthusiasm. Wyatt doesn’t want to be near her now when he’s cranky so she has gotten more and more frustrated and I in turn have taken over even more to prevent Wyatt’s endless breath holding episodes. I have tried to explain to the nurse that this is normal baby behavior and that her getting frustrated is only raising the level of tension which Wyatt easily picks up on and therefore only makes matters worse. I have even given her hints on what to try to do to earn his trust but nothing has been working. Worse, over the last few weeks her frustration has led to her distancing herself to the point of slacking on her nursing duties. I even had to talk with the nursing case manager about the fact that she hasn’t been doing CO2 checks despite me telling her repeatedly that they have to be done. She also hasn’t taken any of our instructions on how to look for Wyatt’s cues to prevent episodes and when and how to intervene. When I spoke with the nursing case manager again today, I told her straight out that it seems that this nurse just doesn’t care anymore and no conversation is going to help that. I am done with her sighs and me explaining over and over again what to look out for, yet when I put tough love to use with Wyatt when I try to get to fall asleep by himself for example, she just sits there and plays with her phone instead of observing what I am doing to try to get to know his likes and dislikes better and to start picking up on his cues sooner. I told the case manager I cannot make someone love their job and I cannot teach her to want to get to know my son’s personality. She tried to tell me that during his four hour nap she couldn’t get access to do a CO2 check because he was sleeping on his stomach. She gave me that excuse even though I showed you several times how to do it and I even set it up for her and left the inline co2 monitor part in place already. But she couldn’t get to it in four hours? That’s called not caring. To push matters over the edge though ,the nursing case manager calls me back later today and says that she discussed these issue with the nurse and that the nurse said I am taking away her independence to take care of Wyatt. The nurse said to the case manager that she feels I have been increasingly frustrated, I am acting as if I don’t want nursing and that I am taking over more and more of Wyatt’s care and therefore she is unsure what I want her to do during her shift. Seriously?  Yes, I am taking over more and more because I can predict and prevent cyanotic episodes before alarms sound, whereas the nurse hasn’t applied any of our instructions and suggestions, she doesn’t do shit until a machine alarms at which point it is too late to prevent the cyanotic episode. So, excuse me for not just sitting back and watching her put my son through episode after episode. This is not like the first day of daycare where the child throws a tantrum and then gets used to it after a couple hours. We are talking about a child who does not know how to cry, who faces very real risks of further brain function compromise with each cyanotic breath holding episode. So no, I will not just hand him over to the nurse and put him through this, crossing my fingers that in a few days, a few dozen episodes later, he will simply get over it. Then the nursing case manager proceeded to ask me if I want that nurse to return tomorrow and simply shadow everything I do with Wyatt to give it another try. Their concern is that if I take this nurse of my son’s case then we have no coverage at all. No thanks, I don’t want coming back tomorrow because I cannot bite my tongue at this point. I have no trust left for this nurse and I have no patience left to be civil if she returns. I am perfectly capable of taking care of Wyatt and I don’t want her to stay on his case only to keep the agency out of hot water. Long story short, coming from the nursing agency, I’m one wrongly phrased word away from canceling home nursing altogether again. Based on my personality alone, I know I will never be comfortable with depending on or reporting to someone else about my son’s care. No one is ever going to know him as well as we do and no nurse will ever have the same sincere selfless drive for Wyatt’s best interest and safety as we do. I am so angry right now that I even have to put up with this and listen to these comments. I am angry at doctors for pushing home nursing on us when our gut feeling from the very beginning told us that it wouldn’t be the right decision for our family. I am angry that stupid bullshit like this still rocks me to my core and makes me doubt my parenting choices for my special needs child. I am furious at comments that indicate that a special needs child should be treated differently and that a special needs child should take advantage of special programs. Just because these programs and assistance like home nursing exists, doesn’t automatically mean it is the right or best choice for every case. It is not that simple. In the end it comes down to the parents deciding what they want for their own child’s care and future, how they want to raise their child and what works best for the child’s personality. I will not stand for being told how to raise my child or how much care to provide for him myself… I am not sure that after all this nonsense and unnecessary stress, I am even willing to start looking for another “good fit” nurse again. I think the nursing agency and this one nurse might be right about one thing, I don’t want nursing for my son.