Update in vain

Emily is still in high spirits except when it comes to her shot. We as the parents have been dealing with many setbacks in providing things for her. According to many we have great insurance.....unless you have SoJIA I guess. We are still paying for most things for her since we can not find out what she qualifies for. We are up to around 4 case managers so far and that makes it interesting in it self. The insurance has been great about PT and OT but finding out anything else she may qualify for has gone no where (and the original PT/OT insurance referred won't take Emily due to her age). Doctors say ask the Case Managers and Case Managers refer us to the doctors for prescriptions.....but when your doctors have not dealt with anything like this how do they give you a prescription since most things might get denied....but the case managers can't say unless we have a prescription.

And, when the doctors are hoping for the best and want to wait on everything what help is that when you as a parent are trying to get things in the works now. So, we have doctors saying wait, case managers saying wait. And, yes....we are still paying for things that some have said might be covered by the insurance but since we don't have a prescription (doctor needs to know if its covered or how to write it) it can not be provided.

We are currently working on something to see if we are actually going to be provided the service. We are prepared if it is denied. Just makes it harder on us. But I guess that is how insurance is suppose to work. You have to know the system to get the things you need.

We were looking at a service dog or therapy dog but those are looking like no goes since we can't even get a handicap placard to help us with our daughter and getting her places and moving around. Instead we have to park far away and take her by stroller where ever we go. She is already 40 lbs minimum and seems to be growing more....stink in steroids. Just makes it harder to push her around as she grows but that I guess is our problem since she should be fine in about 6 months (already out a month and a half). That is all we are told...she should be better back to her normal self (I fear there is no return to her normal self). She wakes multiple times during the night now has reverted to not talking most times (may be due to pain or something) After about 40 minutes of trying to get her to do a little bit for PT....not much she is done and tired. So tired she falls asleep in the car when I get her in it. She never slept during the day in the car before unless we were on a super long trip.

She has so many wants in things she wants to do but doesn't have the desire or energy to try or do them anymore. We work hard at getting her to move around all the time but after a couple minutes she is usually exhausted. Not totally sure about what we will do about school time yet. We are still working on trying to get some of the medicine helps (gauze) to wipe the alcohol wipes wetness up after we rub that on her. Having a field day getting enough of the other supplies needed to give other medication properly. I have to almost go back every other day almost to try to get more to make sure we have some in stock. We are working hard at getting all the medications taken care of and all the kinks worked out on how we will receive it all and where to pick it all up.

It takes great amount of work to try and provide for her. I have only had one day not seeing a pharmacy or doctor or therapist in the past few weeks. Shoot it took us a month just to get PT and then have to fix it so she could actually go after the evaluation which took an extra week off. Have not even been to OT yet....end of this month for evaluation. Only thing that seems to be helping and her enjoying is what we are having to pay out of pocket for...swim therapy.

After reading lots of blogs about others in kind of the same situation....it seems it is just going to get worse with how she was more severe (initial hospital stay) then them from what I can tell, but all kids are different and hopefully that holds true and she can cope. We are trying to avoid the inevitable...a wheelchair. Supposedly that is something that the insurance actually would provide fairly easily. But doesn't stand for what we are trying to do. Be proactive...not nonactive and make her life the best possible for her to live with. We read somewhere that if they are not under complete control or just under control within 6 months it will be a lot harder on her in the long term. But, the arthritis part has not even kicked in yet from what we have been told and we are praying that it never kicks in but realize that we must prepare for all aspects and possibilities since we had also been told in the hospital that Emily was not following the textbooks at all.

Best Companion/Helper

Have you ever wanted to make sure your child had the help they needed now and hopefully into the future...so you want to plan for as much as possible. One way is a service dog or therapy dog. For our daughter a service dog would to wonders with helping her now and into the future. The companionship will be the most helpful along with being able to help her with things she has problems doing now.

But they are very expensive and who knows what insurance would say about it. Therapy dogs are a little cheaper but do not provide the help she will likely need in the next year or so (which is roughly the time it takes to train one). A therapy dog would only provide companionship but would not be able to help with getting up, doing basic things period. But, we can only hope for the best and that she can make due without one if we are unable to provide one for her.

From blogs and other sources we have read about kids going through some of the same things ems is going through (all children are different). Many are wheelchair bound part time and are unable to many basic things we take for granted. And, on there good days they are able to do some things....but the worry is the bad days and how long they would last or how much they would affect her physically or mentally.

So, for now we are looking at options to see what we can do to provide something that will help her in her times of need. Right now she does good for a little bit (about 30 minutes) and then is tired and overworked for the rest of the day until she recovers enough to do something else the next day.

Case Worker Please

Don't you just love case workers and all the help they are in dealing with insurance....O'ya after being out of the hospital over a month we still don't seem to have one or at least one we can contact. Can't find out what our daughter qualifies for since we don't have a case manager. Since I don't have a medical number for the items to see if they are covered....need a case manager for that. But, we are still waiting. Called to try and find out some information but of course I needed an 5 digit number for our case manager. Called the insurance company to try and get that as was told our daughter in fact did have one....but they just don't have any contact information for the case manager just the name.

Sorry, but that is worthless. Have been working on getting care for our daughter and keep getting told we need to talk to our case manager...we keep saying we don't have one and then told that they have put another request in....well that probably around 4 plus request so far. This is getting very annoying for us. We are trying to get our daughter care and just have not been able to get anything yet. Have to go through doctors for everything still but her main pediatric doctor is suppose to be on a work trip for several weeks....So, we are paying for things out of our own pockets....even with money very tight...but are buying less and doing less of other things to pay for the care we are getting her since we can't find out if any of it is covered.

Sorry, for the venting but over a month and still no case manager to guide us through the insurance/care guidance.

A week/weekend

Well, it was a fun week and weekend....not really. Spent every day in some form at one appointment or another, even ended up at the doctors on the weekend. Ems has an ingrown toenail. You would think that is not much of a reason to go in so fast but when your child in auto-immune and on a few suppressing medicines....then something simple like that if left untreated can turn into something worse when the child's body can't fight it.

This is a new norm for us as we learn about the new norms in our life. Which are not normal at all. We have had to change the way we do things, the things we do, the precautions we now take when we do things....we are always scanning around us for people who look like they might be sick and keep Ems and our selves away as much as possible.

So, as stated before even an infected toe takes us immediately into the doctors. We were very fortunate that they were able to get us in the same day. We are continuing to learn things new everyday and work hard to provide the things Ems needs and also try to give comfort to our son who needs great attention also.

Trials and overcomming

In life there are trials and you have to adapt and overcome. That is always easier said than done. It becomes complicated when you add others into the mix of those trials who you love very much. I see my daughters pain every day and night as she has to rework at getting the strength for anything. She had swim therapy the other day and only about 30-40 minutes she was wore out from complete exhaustion. But she was so happy during that time and more playful than she has been in months. I can't wait for the next session since I have seen how much it has helped her realize that she can work through things that are put in front of her.

Her mother and I are very different when it comes to doing things. One is more aggressive and the other more relaxed. We have had more squabbles lately over little things as we start to come to grips with reality and all the changes that need to be made in our lives to provide better for our family. Our daughter will probably never be the same but hopefully through therapies and medical help will be able to regain some if not most of her capabilities before this terrible disease hit. It is a long shot but we must look at the positive in life and work with what we have.

We both want to provide for her and give her every chance but at the same time one of us doesn't want to push too fast while the other dreams of her being ok the next day and no signs of this disease. It is something we both hope and long for that she can go immediately into remission....but so far her body hasn't agreed with that in my opinion. But, it is starting to agree little by little, we have also noticed how easy it is for her to ketch something....anything without great/extended interaction. Her body is a huge fighting machine and it is giving the medications a run for every inch it tries to reclaim and calm.

We also have to try to balance the needs of your youngest son and give him opportunities his sister had growing up to the best of our ability. After all he wants to be like her.....just hopefully not have what she has lying dormant in his body. That is a great fear of both of ours that he may also have something as she does.

Currently she has at least one appointment each day for the past couple weeks along with others in the families appointments and some days multiple appointments.

All we can do is try to give her the best chances without overworking her and help her grow and live with this disease that may/will never go completely away...for now and forever she will be classified with Juvenile Onset Juvenile Idiopathic Arthritis (SoJIA / Stills Disease) with Complications of MAS.

The trials have been given to us and now we have to strive to deal and overcome to the best of our abilities. And to bring our family closer together in every aspect of being a family.

Schedules

Isn't life great when you have a schedule? Yes, it can be until you have to work around a bunch of other peoples schedules and of course don't have openings. So, you have to resort to one thing a day and repeatedly going back each day to basically the same place or close to the same place day in and day out. You would love to save gas and get everything over with but it just does not work that way.

And don't get me started on technicalities....already went through on this week where our insurance approved treatment but the treatment facility decided that a doctors nurse could no longer sign the prescription for the therapy anymore and it had to be the doctor....even though that is how they had been doing it for a long time for the therapy. So, our daughter lost opportunities for Physical Therapy because of something as stupid...and no we couldn't schedule an appointment until it was fixed even if it was in the process of being fixed.

Our poor daughter...it saddens me when as we try hard to get her help that we are stopped not by the insurance but the people we are asking to help her.

It doesn't help either when we are referred to another therapist for something and approved by insurance except get a call from the therapist saying they don't work with children that young.

That in it self is a grip....we want to provide the best care and care that is said to work for adults or older children but since she is younger many places don't know how they could let her at such a young age.....5 is too young to do Tia Chi I guess and many other things....who knew.  So, we spend more time trying to find places to work with our children since we don't want to have the possibility of something happening to our son also.

But, as parents we sacrifice to make appointments and try to keep them the best we can....even if only once a day and everyday of the week.

The Supposed Beginning

Like most families we would get sick once in a while for a day or so, but then it happened. First, Thomas seemed to have caught something then me about a week later and then Emily seemed to be fighting something also. At first I did not worry too much, but when it hit a week of breaking high fevers for a week off and on (I remember always being told to wait a few days before taking to doctors....) finally got an appointment with her doctor and was told to see if it goes a way it may last a couple weeks. During this time Amber was very worried especially being on the other side of the world and no chance of getting home soon. Over the course of the next week she was looking worse and worse and was starting to show signs of a rash more and more....got another appointment by taking the appointment I had scheduled for myself and demanding that they gave it to Emily because I was doing better and she needed it more (This was also the day most of the medical systems went out) and tests were run on her. We were sent to the hospital for the tests that she needed with her blood. We had got home around 5 pm from running and doing that, we started at around noon I think. I was getting ready to make dinner for the kids and then I got a call, "You need to get your daughter to the ER immediately". So we were off again back to the hospital and was there until 3 or 4 in the morning I think. They did more tests on her...said they could admit her if I wanted....but I didn't see a reason since she was only showing the fever and they didn't know what was causing it and I had another appointment the next day with the doctor for her. So we had one day home between doctor visits.

We went to that appointment and I was already a little tired by all the up time but was doing very good. I was also in constant contact, in some form, with Amber. I appreciate her command understanding during this time and all the help they were. I checked my phone prior to leaving for the doctor and noticed I had a message from around midnight on it..Checked it and was told to return to the ER immediately or if I did not receive the message before the doctor to arrive for the appointment. So, I went to the appointment and they saw us pretty quick. Was told all the test were negative but her white blood count was high...and was higher on the retest. The doctor arranged for us to bypass ER and be admitted directly into the Children's Pediatric Wing of the Hospital. Left immediately from the doctors office and beelined it to the Hospital yet again....but I did stop by the house and picked up a couple things....I was starting to have bad feelings about being admitted (meant something was wrong and they didn't know exactly what). Arrived with two children in tow and she was immediately put into a room and the process of more tests, retests, x-rays, PET Scan, eye exam, and a dermatology exam commenced over the next several days.

The staff at the hospital were great and the atmosphere was wonderful. Thomas found out he could get the staff to playing with him while I was helping Ems. Which was a great help. All the test kept coming back negative, so it was decided we should go see a specialist at another hospital. So I packed the kids up for a couple hours and headed to that appointment....appointment was a bust at first. Hospitals sometimes don't play nice especially if you are still admitted at another one. But the doctors did talk in the background and were able to decide what test still would need to be run but were told it probably was not what it was thought to have been because Ems wasn't showing the main symptom. Returned to the hospital and they added some medications that brought her fever under some control....enough for the moment, but her blood work was way out of whack. Schedules were made for Bone Biopsy, CT Scan, Spinal Tap. At this time I was becoming more worried and I know Amber was worried as could be. I asked the doctors about getting my wife back due to the high risk with all the things they wanted to do....and papers were filled out and an Red Cross letter was sent immediately to her ship. Amber called to see how Ems was doing, and I told her about the procedures and that I had a red cross letter sent a little before her call. Next thing I knew they had booted her off the boat as fast as possible to get her home in time for the procedures...her plane would arrive an hour before they were to begin (her work made arrangements to have her picked up and immediately taken to the hospital).

This is all happening for a "Fever of unknown origin" and the likely hood of her dieing was edging ever closer and closer (hence the red cross letter). The day of the procedures they thought it had to be something for certain and the test may not have been needed and her fever was finally being controlled but she was not getting any better.Amber arrived and by Sunday we were sent home due to nothing being able to be done for her at that time. She started getting worse at home so calls were made to get an emergency appointment with the specialist....not much improvement...she did look worse but wasn't showing a classic sign of Juvenile Arthritis which is joint pain and swelling. So, we immediately returned to the Hospital and the procedures were done later that afternoon. That night she had to have a blood infusion (she is 5) and the next day test were negative for cancer and were to be transferred later that day to the local Children's Hospital were the specialist was. That night we met one of the other specialist on the team and were told what she had, Systemic Onset Juvenile Idiopathic Arthritis (SoJIA or Stills Disease) a much rarer form and hard to diagnose as fast as she was. This means that the arthritis does not usually show at the beginning like I believe all other forms do (making the evasive tests required).

So, you say great you know what it is and you would think there was a set way to treat or cure it. Well, you would be wrong. There is not. It's hit or miss and every child is different and reacts different to different medications. Oh, and since it is the more rare form she will most likely be on some kind of medicine the rest of her life (lucky if just one med) just for this disease. Oh and she also is more sever than most cases that have gotten it and to top that off she developed Macrophage Activation Syndrome (MAS) which increases the likely hood of dieing even more if not controlled in the early stages. Great things to find out....did I mention we spent 5 weeks in total getting her under control and on oral medications to be able to release her from the hospital....besides the week and a half to two weeks at the other hospital. By the way they consider MAS to be rare to get but Ems had it twice over our hospital stays.