Sunday, May 26, 2013

Sundays with Ethan

Ethan did such a great job at church this morning. He was having a hard morning SO i did what i did one other time that i was ready to say that there was no way that we would be able to go to church.....i SLATHERED his ENTIRE body with Young Living essential oils! I covered his back and front with Valor, Peace and Calming and Lavender and on his arms and legs did the P & C and the Lavender. It worked the first time AND it worked AGAIN!!! He only had to leave the service because i felt a very warm wet spot on my pants a little over halfway through the about 11:35am. Victoria asked if she could go and change him! Ummm.....thank you, my dear!
After hearing this past week that he is being expected to sit and be focused at school for 30 seconds to 2 minutes on something and seeing that he was in church from 10:20am until 11:50am......i am a little bit excited!!! Such an incredible blessing!!!
All of those Sundays when i DID try to take him and had to hold him tight in my arms out in the foyer, dripping in sweat, not hearing anything of the sermon(trying to explain to him that the music will come back again just not as soon as HE may like).....discouraged and feeling so alone. All of those Sundays when we stayed home as those days were just too overwhelming beforehand....feeling as if he KNEW when it was a Sunday. All of those Sundays where the Lord met me by using Moody radio......those Sundays where i felt SO very alone and yet...GOD WAS FAITHFUL!!! Those Sundays when i went and Ethan made it so we had to leave as he just couldn't handle the stimulation of so many people and feeling like everyone was staring at me. That recent Sunday when i realized that it was NOT best for us to sit toward the back BUT instead to sit where all Ethan saw was the stage in front of him. It has worked MUCH better. I am SO very proud of him and who he is and how he has grown. It may not show up much on paper but it has been HUGE in my book! I am ALWAYS BLESSED!!!

Wednesday, May 22, 2013

I apologize.... and an update on Ethan/family

The past few weeks have been some of the hardest, personally, for our family.  A dear close friend of ours passed away last week.  His decline, from the cancer that he had been fighting for not even a year, was all of a sudden VERY quick.  I was able to be by his bedside and with the family daily.  Our friend has been our friend for over nineteen years.  He and his wife played Rook with us almost every Friday night for the past eighteen years.  Having a 'couple friend' is just no the norm as it is a rare thing to be blessed with and we were very blessed.  Our hearts ached as this last week has been spent with the family and we will continue to be very involved in their lives in the future.  PLEASE keep the Troxel family in your prayers.
Ethan's IEP meeting was yesterday with his amazing teacher, his wonderful gym teacher and the head of the school. I am reading over the IEP report and i am in awe of the fact that Ethan has been able to go to church more often lately. I know that many people do not see what we see here at home (even if you are here for long time periods) but to have what WE see be validated was also, a relief of sorts.
Just a few small parts of the almost 20 page report...."during structured cognitive activities directed by the teacher, Ethan is able to attend for very brief periods of time (30 seconds to 2 minutes)." So my response to that is that if anyone had been wondering why i wasn't at church very often this whole past year, THIS would be the reason. AND the miracle??? ETHAN HAS sat through one full service/sermon once and almost did it this past week ( i was 'glistening' by the time the service was done though). SO, to tell you the truth, it makes me all the more excited over the fact that Ethan HAS done as well as he HAS done in church the past few times that i have felt that we could TRY it. AGAIN, this means that IF you DO see me at church WITH Ethan, PRAY for us as it is a VERY big deal for him!!!
There is so much more and may i tell you that when i read all that he is still struggling with, i am saddened. My heart breaks. I'll get back to my fightin' mama stance but tonight, my heart weeps. He has a long road ahead of him and i am SO blessed to know that he has a family that will be with him every step that he takes....and that that family has me as the 

PS.  Ethan's biting of his siblings and myself has stopped almost completely.  We had a very hard first year and what was really strange to me was that one of the hardest times was for about four weeks starting late in the tenth month.  I also apologize for not doing a special update on his one year but that was the week that our friend was dying.   I am still in grief as it has only been a little over a week.  I will try my best to update you more.  Thank you to those of you who pray for our family.

Saturday, May 4, 2013

Sick kiddos......

This is a post from my FB wall just a few moments ago.  Sophina was sick last night and it continued into today.  THEN, Ethan got sick near to his bedtime.  It is after midnight......

YAWN.....STILL SLOWLY SLOWLY SLOWLY tube feeding Sophina! We tried to feed her but she REFUSED COMPLETELY! UGH! I was afraid of that as every time that we have to tube feed her, it is a hard thing to restart feeding through the mouth. It was late due to Ethan getting sick so i decided to try to make her MILD food into something that she could have in her feeding tube....ummm, NOPE! UGH! It took me that much longer to make something. I used another batch of ginger tea with raw honey and added a banana, salt, raw sugar, and two drops of Citrus Fresh YL essential oils for the electrolytes. My own home made pedialyte ;) So far, it IS working but i am now fighting a headache. UGH! I have at least another hour and one-half or two hours. PRAYER that i will be able to sleep through the night tonight. I am ALWAYS BLESSED!!!
PS. SO grateful that i get to be the Mommy who loves them and cares for them when they are sick.....i know that that sounds proud BUT rather, it is what i would WEEP and PRAY as i would walk for hours at night with Sophina so sick OVER and OVER and OVER.....she was SO SICK, so often!!! I would be walking her and think of those thousands of children on the other side of the world in orphanages all over Eastern Europe where children just like Sophina were also probably sick but had NO ONE to pick them up to help them when they were gagging on their own vomit (happened MANY MANY times with our Sophina) OR even on her own massive amount of saliva that she struggled to swallow! I would wake straight up in bed and JUMP to her, just two feet away from me. I would walk and walk and weep and pray.
Now, there is ONE of the thousands upstairs having a mommy who loves him dearly and will jump up when he is sick. Even though i pray that it does NOT happen tonight ;)

Thursday, May 2, 2013

A super tough 4 1/2 hours tonight

I have never needed two of me more than these last four + hours! UFFDA! (it was from 4-8:30pm tonight)
A few things i learned in that time.....

#1) That i need God's wisdom to know what triggers the way Ethan was

#2) Sophina MUST have a nap

#3) I need to move the laundry room UPSTAIRS somehow, some way and SOON!!!


PS  Thirty minutes after the kids went to bed i heard this on our CHRISTian radio station.

"The answer from God to Paul's prayer request was NOT that He changed Paul's pain but

 rather that He changed Paul's perspective." 

God is good! I am ALWAYS BLESSED!