Day 1

Funny, I just posted about how I was going to stop writing to much about Sarah in the hospital and all of her medical issues, and here I am about to embark on a 15 day journey of doing just that.

Sarah was admitted to Akron Children's today around 8:45 am. We waited for several hours to get her central line in place (which was put in near her groin) because the hospital is very busy right now.  She and I both were pretty cranky as we were both hungry due to the fact that a procedure that was supposed to take place between 10 am and noon got delayed until 2 pm. I stayed with her while she got her central line, and it was pretty hard for me not to break down. She was put under sedation and doesn't remember a thing which is good.

Her plasmapheresis was delayed by a day which means that a 14 day hospital stay is now going to be 15 days. I know that the hospital staff isn't any happier about having to keep her longer than I am, but it was still a pretty frustrating day none-the-less. I feel like we just sat and sat there for hours on end. (I guess I feel that way because that is what happened!)

As always, Sarah was a trooper. She received an IV, had blood drawn from a different location than where her IV was, and had the central line put in. Her only complaint was that her leg was sore where the line was put in. No tears from her. No whining. She was a champ like always.

We were visited by a member of the Doggie Brigade. Sarah met a new friend named Clark. Clark happens to be a pure bred bull mastiff. He was one of the sweetest dogs I have ever met. He brought a smile to Sarah's face which made me happy.

Sarah also had crafts brought to her room along with some new silly bands by the Child Life nurse at the hospital. She was happy to be able to work on something while waiting around for this and that to happen.

Tomorrow her treatment will begin around 9 am. It will last for about an hour and ten minutes to an hour and 15 minutes. She will then be free to go about her day. She will most likely spend some time with her favorite doctor, Dr. Locastro.

The other kids spent time with Bob today, and then Andy babysat for a bit. He did a great job. On top of taking care of Josh and Elizabeth he also straightened up the upstairs as well as did the dishes that the kids dirtied. I was grateful for his help. My in-laws helped to take the kids to their soccer practices. This was a godsend as it allowed me to get dinner (take-out) and have a few moments to straighten up a couple of things at home. My goal is to keep their routine as normal as possible.

My mom will be spending time with Sarah's in the morning tomorrow, so that Bob can work. This will allow me to spend the morning working on school work with the other kids. Tomorrow evening I will be staying with Sarah and Bob will be home with the kids.

As for the rest of the tonight, I plan on snuggling with the 3 kids I have at home. I will also spend some time thinking about how I need to have a better attitude about this whole process. I need to make sure I have a better attitude from here on out because getting cranky like I did today will help no one, and only make these next 2 weeks drag on forever.

V - I - C - T - O - R - Y for Sarah

I feel like a warrior who has just won a long hard fought battle against an opposing force that was so much larger and more powerful than myself. I feel relieved. I feel exhausted. Most of all, I feel grateful that I stuck to my guns and fought for what needed to be fought for.

Sarah is going to be getting the plasmapheresis treatment that I have been asking for for the last 6 months or so. She will be admitted to Akron Children's Hospital tomorrow morning, and will remain there for the next 2 weeks.. I am  very scared because Sarah will have to have a port placed near her clavicle. I don't want this procedure to hurt her.

I am not sure what additional medications she will be one. I thought I read somewhere that steroids are given along with the plasmapheresis, but I am not sure. We will be getting a call from the nurse of the admitting neurologist in the morning once she has lined up a surgical team to place the port into Sarah.

I am grateful for Dr. Rensel. She heard what I saying this morning, and agreed with my assessment of the situation. She went ahead and found a neurologist at Akron Children's that would oversee Sarah's care for the next 2 weeks because she knew that this was the hospital where we preferred to be. (Which coincidentally is one of the doctor's who told us that she could not help us and that we should seek help somewhere else.) She put in some extra legwork to get Sarah the care that Sarah herself preferred to have, and I appreciate that.

Please keep her in your thoughts and prayers these next two weeks. She sure could use it.

Everything's Gonna Be Alright

Sarah is feeling better today. Her vision is still 20/100 in her right eye, but her left eye has improved from 20/200 to 20/100. She still has black spots and blurriness in both of her eyes but both symptoms have subsided since yesterday. I no longer look like a cyclops to her because the missing vision in the center of her left eye has returned. I am so glad I listened to my gut and did not have her admitted to the hospital yesterday (or the day before or the day before that...).

Things are not great, but they are better than yesterday - for that I am so very thankful. Despite Bob's and my reservations Sarah decided to play in her soccer game, and I am proud of her for doing so. I am proud of her for listening to herself, and not others (i.e. her parents), and for doing what she knew to be right in her heart. She certainly did not play well, and I knew she had trouble seeing the entire time she played, but to those who don't know what is going on inside her body she just looked like an unskilled soccer player. I'll take it.

Bob and I will be contacting a hospital in Buffalo, NY that specializes in pediatric demyelinating diseases such as MS and NMO, on Monday to find out what we have to do to get Sarah seen by their team of doctors. If that does not work out, we have beloved friends who live in the Boston area, and I know that there is a wonderful children's hospital there that also specializes in demyelinating diseases in the pediatric population. We could stay with those friends while attempting to get Sarah the care she so desperately needs.

Getting family thereapy has proven to be a bit harder than I thought. I have called two well respected facilities and neither can offer the kind of therapy we are looking for. One of them has offered to supply us with a list of doctors who may be able to assist us in learning some tools that will help us not only cope with this diseases effects, but also to thrive in spite of it. I plan on taking them up on their offer.

On another note, I think I am going to limit (or try to anyway) my posts about Sarah's health. I have these 3 other amazing children whom I hardly ever mention because I have allowed this disease to take up so much of my life. I also have an amazing daughter who is amazing for reasons that have nothing to do with her disease.  I want to start sharing more of their lives - their successes and triumphs - because they deserve some of the spotlight as well. It is so easy to allow a disease such as Sarah's to swallow a family up whole without ever realizing it is happening. This doesn't mean that Sarah's illness is any less important to me. In fact, that is so very far from the truth, but what it does mean is that I need to start moving on with my life - with our lives. This disease is not going to go away. It is not going to disappear, and unfortunately I am never going to wake up and realize that this past year and the years to come were a bad dream. But I can stop allowing it to take the center stage of a very sacred space - my blog. In doing so I think that this will in turn allow me to move on in other area's of my life as well.

I will of course always keep you updated on any significant changes, any hospitalizations, or any pertinent news regarding Sarah's health. I just want to step back from the heaviness of all that this disease tends to bring. I want to show you all the wonderful things about my life. I want to tell you stories of beauty that surround these amazing souls that live in my heart day in and day out: Andy, Josh, Sarah, and Elizabeth. No sickness, no sadness, no grief. Just amazing stories about amazing kids, and the honest to goodness amazing life that I have been truly blessed to live.

Sarah's Relapse

Sarah is having a relapse. Her vision is currently 20/200 in her left eye and 20/100 in her right eye. She is color blind in her right eye. There is a black spot in the center of her left eye which prevents her from seeing anything straight in front of her out of that eye.

Things are bad.

We are going to wait out the weekend to see how things go both because Sarah has asked us to and because Bob and I need to come up with a new game plan. The normal protocal of treating Sarah is no longer acceptable to us which is why we are not rushing to the hospital today and why we did not rush there yesterday either.

 Her current treatment DOES NOT work. This will be our 8th time on these damn steroids and each time her vision takes more time to recover, and what she does recover is less and less. As soon as she comes off of her steroid taper she relapses. Steroids come with a cost. They are not a free pass to better health. Her bones and organs cannot take repeated exposure to these types of drugs. I have said that before, and I tired of saying that. I want someone in the medical community to HEAR me.  I AM TIRED OF FEELING LIKE I AM SCREAMING FOR HELP FOR MY DAUGHTER AND NO MEDICAL PROFESSIONAL HEARS ME!!!  DO YOU HEAR ME, DOCTORS?!!!!! YOUR CURRENT TREATMENT PLAN FOR SARAH IS NOT WORKING!!!! IT HASN'T WORKED FOR 11 MONTHS! NO, I AM NOT GOING TO WAIT JUST A LITTLE BIT LONGER TO SEE IF THIS OR THAT WORKS. I HAVE BEEN WAITING FOR MONTHS AND MONTHS!!!! AND YOU KNOW WHAT ELSE, DOCTORS? I AM WOMAN - NO, I AM A MOTHER - ON THE VERGE OF FREAKING LOSING IT SO YOU BETTER WATCH OUT.

(Thank you for letting me freak out just above. I needed that.)

There is a treatment called plasmapheresis that I think Sarah could benefit from. It is used to treat both MS and NMO patients when steroids are not working. I have inquired about it several times to both the Akron Children's neurology team and the Cleveland Clinic neurologists to no avail. I seem to hit a brick wall anytime the treatment is mentioned. Guess, who is going to plow through that brick wall come Monday? This Mama - that's who. There is merit and value to this treatment method. If you are curious - look it up - it is all right there. I think that the biggest problem is that it is costly....I'll let you form your own opinions right there about why I have not been successful in getting Sarah this treatment.

I know in my gut that Sarah's current treatment is no longer the way to go. I know that sounds so ridiculous that a gut feeling has so much standing in my life, but I know no other way anymore. My intuition is all I have to stand on a lot of the time, and it hasn't failed me yet. It is the only thing that hasn't - doctors, medicines - all of the things that are supposed to work and are supposed to be fail safe - are not. They have both failed Sarah tremendously.

We are going to wait things out at home. It is her request, and as her parents it is our job to honor that. Plus, I agree with her decision with all of my being. She is a smart, brave girl. She knows what she needs. She knows that by staying home her vision may get worse before it gets better. She also knows that her current treatment plan of 3 days of IV steroids followed by a 2-3 week taper does not work.

I am frustrated. I am tired of feeling like no one has any idea how to treat my daughter. I am tired of feeling like a ping pong being passed back and forth between doctors. I am tired of feeling like it is me vs. the establishment. The medical / insurance company system that we have in this country is bullshit. And I wouldn't wish my journey or anything similar on my worst enemy.

Oh, and if you are wondering - yes, I am on the verge of a freaking breakdown. Have a nice day!

Sarah

We are coming up on the 1 year anniversary of Sarah's diagnosis. May 18th to be exact. I find myself tearing up at random times, and feel the weight and enormity of the whole situation weighing down on my heart. She had trouble hunting for Easter eggs, and quietly pulled me aside after the first one (my spoiled kids got to partake in 3 Easter egg hunts on Sunday) to tell me that she had only collected a couple of eggs because she couldn't see them. I walked with her on her second hunt to try and help her locate as many we could, but all of the other kids followed us and she was embarrassed at having my help so she went her own way. On our 3rd hunt she seemed to be doing a bit better, but she still needed our help in finding obvious (to those of us with good vision) eggs in plain sight. It is times like these when her disease breaks my heart.

We went camping on Monday and she fared no better. (Our camera ran out of batteries, so I have no pictures. Boo!) Our campsite ran along a river, but in order to get to it you had to walk through some brush and trees. She kept getting caught in the pricker bushes because she could not see them. She walked into a bush while we were walking to the van to get something out of it because it did not yet have its leaves and blended into the background.  The boys were so gracious with her, and I found them quietly leading her to the river holding back a pricker branch here or pushing aside a fallen twig there. They would warn her when the ground would become uneven so that she would not trip. I spotted a frog that I tried to point out to her when we were sharing some time alone and she could not see it. It was a miracle that the frog was so patient because the only way I could get her to see the frog was to take her hand and have her touch it. Once she touched it her eyes focused in on the animal and she was able to see it.

Her vision seems good  at home because this is familiar.  She does okay riding her bike along familiar routes and has a couple of girlfriends that she plays with and does not seem to have trouble seeing at their homes. Put her in new surrounding and the damage to her eyes becomes apparent to those who know her best. Her disease is a source of embarrassment for her, and I have witnessed her lying to people that she can see something that someone is trying to point out to her when she cannot. I know this because I know her, and I have learned to watch her like a hawk for the discreet signs that something is amiss.

As of yesterday, she began to have trouble again with blurriness. Bob and I thought this was because of the excitement of Easter followed by camping and not getting enough sleep. I asked her this afternoon how she felt. She was quiet for a moment, and said that she did not feel any better, but did not feel any worse either.

You can mark my words that she will be having another relapse soon. I have been through this too many times and have seen the signs and symptoms too much. I know that this sounds callous, but it is the truth. I worry because we have a trip planned to NYC in just a couple of weeks. I want that trip to be fun and filled with laughter. I want her to be able to see the sights and enjoy all NY has to offer.

I guess more than being able to enjoy a family vacation I want for her to have some stability in her vision. For this disease to just give her some peace. Even if only for a little while.

Criticism

“The motive behind criticism often determines its validity. Those who care criticize where necessary. Those who envy criticize the moment they think that they have found a weak spot.” 

― Criss Jami

Criticism is a fickle thing. What one person deems with critical eyes another sees with no faults. It is only when trying to look at the person behind the criticism can it be deemed valid advice or just something that should go in one ear and out the other. 

I am the type of person that takes criticism - especially when it catches me off guard, and in which I think no criticism is warranted - very hard. I think about it and think about it and think about it, and then I stew about for a really long time. I take a person's own envy and make it out to be so much more than it needs to be. What I should be doing is taking a better look at the source, and determining if that source is a credible person in my life. If not, I am going to start to let those critical thoughts pass right from their mouths into one of my ears and right out the other.  Even better, I think I am going to try and just avoid those persons altogether because those types of people will always be critical of something. 

I am a good enough critic of myself, thank you very much. I am trying very hard to work on my own critical voice. Between myself, my family, and those select people I consider my true friends I have enough people to point out (constructively) my flaws and inaccuracies. I don't need false witnesses to critique my life or the lives of my children. 

Part of learning to be Real, for me, means letting go of all of those who are enviously critical and only letting those who care stay in my life. Maybe that means losing some people I considered good acquaintances, but for the first time in my life I am okay with that. The freedom that comes along with knowledge is uplifting. It is like a weight has been lifted off of my shoulders.

So, go ahead and be critical. Yell and scream and spew your poisonous thoughts that are meant to disrupt. Slyly sneak in a comment or two here or there. Make your opinion known to anyone and everyone else. Just know that I will no longer be listening.

Getting It Done

We are slowly getting the interior of our home done. I will be posting pictures soon. Bob painted the girls room today, and we will be going to purchase them new bedding, lamps, and wall decorations this weekend. They are so excited. The upstairs of our home is one of the last things to get done and I am slowly seeing a vision. And everything will be completed within our budget. Even better. My house is beginning to feel like a home. The good feeling and mood of our home is priceless.

The outside is taking shape as well in terms of a vision, and we will begin to get things done in that regard as well in the next couple of weeks. The seeds have been planted that will hopefully supply much of our summer produce. They will be spending the next couple of weeks indoors growing strong enough to manage the outdoor temperatures.

I am finding some much needed peace within the walls of our home and the surrounding property, and I know that no matter what happens to our family we will always have this sacred place to come back to. There is nothing better than having a home base. This space is becoming very much loved despite its size and location. It is something that grounds us and is our one constant in our ever fluctuating life of such highs and lows that make up our every day. For that, I am very thankful.