update

As you can see I am terrible at updating. I am an over-thinker, so when I think about writing an update I have in my mind that it will take me a while, thus I never get around to it.

I don't even know what to title this post. We have had quite the summer and I'm not quite sure where to begin. I choke up as I think of what I'm going to write. I will start of by saying: I hope some day I am able to pay it forward and help others like we have been helped since all this started. I am overwhelmed at the outpouring of love and support we have received from friends, family, acquaintances and even strangers. I often worry about how we will be able to cover our medical expenses. When I said we have support from strangers I really meant it. People that know someone who knows us have come forward to help. To EVERYONE, From the bottom of my heart, Thank You.

Family and transplant update:

I'll start with an update on Jared. His MELD is a 23 now. His encephalopathy comes and goes and the Doctors have recommended that he not drive anymore for safety sake. He is still able to go to work so that is good, but now we spend nearly twice as much in gas with me driving him to and from work. His parents have been helping by bringing him home some days so that is super nice. Jared gets terrible, crippling muscle cramps everywhere in his body, to a point where is is difficult to grasp anything in his finders and even walk. His gallbladder is acting up again which is miserable and they can't do anything about it until transplant. It causes him a lot of pain and nausea so it sucks there is nothing they can do. The effects of this disease are physically and emotionally draining. It's hard for us see him so miserable. I wish I had some better news to update on him. Unfortunately we still have no idea how much longer he has to wait.

During one of Jared's hospital stays

After Jared's TIPS procedure

For those of you that don't know, our 5 year old daughter has a disease called XLH which causes bowing of the legs, slowed growth, and problems with the teeth. She takes medications several times a day and at some point she will have to have surgery on her right leg. We don't know when that will be. We are waiting to give the medications time to correct as much as they can. She visits the dentist often and gets spontaneous abscesses. When this happens, most often the tooth eventually has to be extracted. All I can say about her disease is, at least it is not life threatening. She will take medications for the rest of her life and hopefully with the meds and surgery her legs will straighten out.

Top left: sad girl after having tooth pulled
Bottom left: 1st day of kindergarten 2014
Right: Sami's legs 4 years old

And last but not least...
This past March I went for am MRI to have
something in my inner ear canal checked. While reviewing the MRI my doctor found a brain tumor about the size of a golf ball on the right side of my brain. It's called a meningeoma and it is non cancerous, phew! It wasn't causing any swelling or other problems yet so we decided it was best to have it removed so it didn't continue to grow and cause problems. So on June 24th 2014 I went in for brain surgery. The first week of recovery was a bit rough but I did well and was back to normal within a few weeks.

40 staples in my head after tumor removal, ouch!

Among all the things going on with our family nothing else could possibly go wrong, oh wait, lets throw one more thing in there. This may not seem like a very big deal, but it is to me, and with all the medical costs we have and continue to accrue, what's another 4 grand??! Shortly after we found out about my brain tumor I ended up in the ER with my jaw so swollen I didn't even look like myself. After doing three days or IV antibiotics I went to the dentist to find the culprit of my infection. All four of my bottom front teeth were infected. The infection had literally eaten away the roots of the teeth and part of the jawbone. I had to have the teeth removed and now have a bridge, that hasn't done much but give me trouble so far. Hopefully I will be able to get implants someday. And to top that off I have another tooth giving me the same problems and have an appointment next wee to have it checked. This is just not normal, there are no cavities on any of the teeth that are getting the abscesses. I am beginning to think I may have the same disease as our daughter just not causing the bowing in the legs.

With all that, and my unexplained anemia, I've kinda had enough. I am tired all the time and have no energy.

How can any one person deal with so much?? I actually am very good at dealing with stress, but I have to admit the last several months have about done me in. Watching my husbands health deteriorate and dealing with my own health I wonder how much more we can take, and when will it end?.. If it was just me that had the health issues and not Jared too I think it would be a lot easier for me to deal with. We literally don't go more than a week without an appointment to a doctor, dentist or hospital. It's getting really old.

Ok, I'm going to stop there. That pretty much sums up our last six months. It's time for me to end my pity party and go to bed :)