Have no doubt

 I had claimed every reason to stay home from church today.  The thought of facing friends and acquaintances was just more than I could bear. Aside from my sadness, I had the family coming over and I'd be making homemade pizza for everyone.  I knew I could worship Jesus right here in this house.  Then, I thought, well...I could just arrive later when church was already started and avoid the hi and how are yous and leave before everyone else.  Yep, that seemed like a good plan.  Something I could manage.  A recent conversation with my brother from another mother, he had told me you are not alone Michelle, we are here to support you guys.  All I could think this morning, was true, not true.  I am alone.  I feel alone.  I know the Lord is faithful and near, but man it feels lonely.

  I got up and started prepping food and kind of taking my time and needing to shower but just didn't think I had the time...but I did it anyway thinking oh we'll be arriving late anyway. Well, I ate breakfast, fried a pound of sausage, got dough ready, made brownies, took a shower, and got ready.  Matt was handling all of Lillian's needs.  My hair was still damp, but it was only 930 am.  I got up at 8:07.  Church started at 10.  I sucked in my breathe and we loaded up and arrived early.    I was talking shop about some recipes with a friend and she started to tell me what a testimony I was.  She reads my blog and was just encouraging me over and over.   I headed to a friend to drop her a card and another friend stopped me to plan an evening to bring us dinner which helped my heart.  

Hear me friends..... HE KNOWS IT ALL.  We were two praise songs in and my spirit connected.  Third song starts,  'all my life you have been faithful, all my life you have been so so good, with every breath that I am able, I will sing of the goodness of God'  I made my way to the front to sing at the altar.   In seconds, two were gathered around me.  Then, there were hands around me, prayers from every direction and I shuddered as tears gripped my entirety.  Scripture was spoken.  Tears were shed by my sisters for me and with me.  I was held, not just by my sisters, but the hands and feet of Jesus.   Sisters came and sisters went.  I have no idea who they all were, but I laid down my burden for my daughter.  Another sister came to me and began to speak prophetically about my loneliness...and that I was NOT alone.  How could she know that???  I have rarely ever spoken that aloud.  That's how you know it's Jesus, friends.  That's how I know HE is near because He uses others to confirm what I already know and believe. So you see, I tried to hide.  No matter what I tried, He had other plans. My heart is still tender, but in my weakness He is strong.  My burden is lifted and peace has been restored. 

Life is hard.  Our life is maybe harder than others.  More of Him and less of me.  Have no doubts, HE is there.  

Dr GI checks in

 Well.... my ardent hope was that her GI doc would consider her inflated blood results as a result of the remicade infusions.  Alas, they are not.  It is a separate issue. He asked me to go right down to the infusion center and get her an appt. We are scheduled to see hematologist/oncologist in June.  She will likely have 2 cycles by then so please pray for change, an earlier appointment or just a decrease.  He was not super satisfied with her bowel movements and a few other symptoms.  After her next infusion in June, if there isn't a change, he will increase her dose.  She also developed a rash at her last infusion and we are to keep an eye out for that next time. 

I am really at a loss for words.  I am not worrying...however, I'm sad.I pray, that this is nothing, because I don't know what it all means...it just feels heavy.  Tears come easily.  If you start not seeing my around, it's because I'm sheltering my heart and my mind because it is just overwhelming to me right now.  Just being honest.  I don't want to pretend to be fine when I'm not.  

I had settled in to feeling like I knew the medical things we were up against and how to manage it all.  That came crashing down in November.  It almost feels a little like the beginning when we were hearing something new every month that needed attending.  

If you didn't know, Lillian has heart, lung, kidney, now bowel, chronic diseases.  She is mentally and developmentally delayed.  She is dependent on us to be fed via gtube.  She falls frequently, she has sensory issues and she is dependent on us for bathing, toileting, a personal hygiene.  One of us sits with her each night until she falls asleep because sleep just has to overtake her, she doesn't just fall asleep as a normal child would. We have been told that her brain has deterioration problems.  We've been told there is a mass on her liver.  Now it appears she also has some type of blood disorder.  She has had surgeries to the point I cannot tell you the number. 

I am grateful  that this blood information was uncovered so something calamitous did not occur.   My mama heart is aching, though.  Keep us in your prayers.  

Remicade #4

 Lillian had her fourth infusion with no complications.  She did develop a rash, which the dr. gut said was not a result of her infusion.  It lasted about a week, so we shall see what happens in June.

Her hgb level did drop quite a bit over the last two months, and her cycles resumed in March, which I *thought* was a positive sign that her body was getting back to normal.  (do you feel the but coming?) Without going into great detail, my angst over cycle suppression was quickly reversed. Her body cannot withstand the level of blood loss she is experiencing and her labs confirm that.  After we get her blood clot/bleeding test results back we will most likely begin another new medication to stop this from happening.   These last six months have really been a challenge for me in making decisions about her care.  It is stressful to constantly be examining her bowel movements and her behaviors.  Now adding medications that I never wanted to do.  There's a constant weighing of the risk vs benefits.  

She had another dental appointment, she goes quarterly.  She went back by herself again and did great.  I'm telling you, I can scarcely believe it, but what a huge blessing and big milestone for her.  I no longer feel the need for xanax after her appointments...just kidding, (not really.. never got any, but felt I needed it HA!)

She had a blood draw today that didn't go well, but they eventually got it and we were all relieved.  

She follows up with dr gut next week. It's been a busy month, with no end in sight.  I continue to count my blessings. Keep us in your prayers.