Tuesday, December 10, 2013

What's new with us? Man, everything.


So we have been very busy over here.  We did an IEP (individualized Education Program) through LPS and began having therapsits come out once a week to our house.  In the meantime we also started getting Simon evaluated at Madonna Rehabilitation Center.  After his inital evals they said they wanted to see him twice a week.  So BAM, just like that, therapies 3 times a week (PT, OT, Speech and feeding therapy).  So far so good I suppose, although we got up WAY to early this morning and I am pretty tired tonight.

I have found that overall Simon seems to really enjoy going to Madonna.  He seems to like getting out of the house and he LOVES therapists gushing over him and telling him good job all the time.  So much so, that he seems to be a little impatient with me if I am not giving him ALL my attention ALL of the time.  I am torn about this.  I am very happy that he is wanting attention and that he wants to play and practice and learn...but I am sort of missing my down time.  Which sounds horrible selfish on paper, but is greatly needed in my life :)

Feedings are still taking a LONG time.  We backed up the bus and began just feeding him liquids (rather than purees) this has helped shave 30-45 min off of feeding time.  Tomorrow is our feeding evaluation and I am trying to fight off the guilt already. I hope that the OT has sympathy on us and doesn't think we are horrible parents for taking a step back from spoon feeding to syringing.  I have worked to let myself off the hook about this change in feeding....because it really improved our lives without having to put Simon under the knive.  Feeding tubes are still being offered.....and declined.  I am either a glutton for punishment or just really affraid of medical trama.  :)

Simon has taken to chattering lately.  If we are all singing along in the car he will start shooting out sounds.  If we are in a loud room full of people talking, he often does his best to join in.  It is pretty cute.  I have been havning trouble getting his newest words on video...but today I did get some chattering recorded.  I thought I would post it for your enjoyment!


Simon now weighs 25 pounds and 8 ounces.  He has been gaining nearly 6 ounces a week, although we have had a couple of set backs here and there.  He has grown 2 inches since coming home and I hope to take some measurements soon so that I can tell you how much his thighs have grown because they have GROWN!!!!  I wouldn't go as far as to say they are fat but they are bigger than his ankles and that makes me VERY happy!  

We have been fighting H Plyori.  Simon has already been through 2 rounds of double anitbiotics and I have my doubts that we have gotten rid of it :(  But time will tell, I have to wait one more week and then I can collect another stool sample....fun :)

We got Simon's hearing checked again today.  Apparently I waited too long after we got the wax cleaned out because he has more wax in his ears again!!  Time to make another appointment to get that cleared out.  All they could tell me today was that his ear drums appear to be working....he is hearing some stuff, but they were unable to tell me that his hearing was normal.  He did really well during the long ABN (I think that is what it was called), I had him in the carrier, that thing is a God send!  I made more than one person tear up as I told them about Simon and what he had been through.  Sometimes I feel so hardened to his past, othertimes I am so broken by it.  I hope this doesn't come off badly, but it brings me great comfort when I see others get saddened and horrified by the truth of Simon's old orphanage....it brings me hope that others will step up and say, "what is this injustice, this can not be, I will NOT allow it to exsist in my world....I will DO SOMETHING"

Doing something....the are lots of ways to help.  I have just begun to let myself read adoption blogs again and pray for the families.  I allowed myself to look, very briefly, on Reece's Rainbow at some children who need familes and prayed for them.  I can't look long or my heart breaks into a million pieces but I have begun to look again.  I feel like I could advocate more for children and familes...so I am opening myself up to the hurt in hopes that it will help me make a difference.

This little girl haunted me this week.  Please pray for her to find a family. 
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MaddieGirl born March, 2006
Moderate mental delay; congenital heart defect, has had surgery to repair; developmental delays; farsightedness. She is currently receiving speech therapy and physiotherapy.

From 2010 report: Maddie is alert and likes to engage. She is helpful, likes to help with the younger children. Her walking in unsteady and is described as “crooked”. Understands simple orders, but in various activities she does not fully understand what is being asked of her. Maddie is determined to be independent and tries to perform everything herself. She enjoys helping others, likes to clean up when she sees a mess. Her fine motor skills need improvement. She seeks out attention. She likes to observe and then imitate. She is protective of her toys. Speech is significantly delayed at this time. She says few words (thank you, bye, this, no, uncle, mom). She enjoys singly loudly in her own little language.

Isn’t Maddie adorable? She would fit right in as “Mommy’s little helper”

UPDATE SEPT 2013:
The girl is well disposed towards school: she already can sit by the table with help completes the tasks, for a short time started to concentrate her attention to the task she is interested in. She is able to complete the task if proper motivation is provided. Still the girl’s activities in general are chaotic, non-meaningful and in consecutive order. She understands short instructions. General knowledge about herself and environment still are limited. She can show some items in her surrounding environment. Speaks in sounds/words, short words which needs the correction; is able to express her wishes, emotions, understands when misbehaved and comes close to a person and touches saying sorry and expressing her apology. She always asks when need to go to the bathroom and walks accompanied by the teacher‘s assistant. Her hygiene skills needs to be improved, but they are in place. The school bus takes Maddie from care institution and brings her back.

http://reecesrainbow.org/38349/maddie-l

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Soon I will be able to introduce you to a website made to raise funds for many projects at Simon's old orphanage.  I also need to tell you, that my friend Grace (as in Grace's fault) is adopting again...and she has asked me to go with her on her first visit....does this sound familar to anyone else?  :)  If you have any money that you "need" to give away before the end of the year...this would be a nice link to click on....http://reecesrainbow.org/58319/sponsorknuth-2   she could use an extra boost this christmas...and prayers that her journey to her son would go quickly.

Here is another family whose story has stopped me in my tracks just this week.  http://reecesrainbow.org/69198/sponsordewberry-3
I think I am a sucker for older child adoption stories.  It is just so beautiful, so out of the norm, so redemptive...so RISKY...but I think it has to be REWARDING.


Well, I think that is all the updates I have, thank you so much for reading and following our story.  Thank you for all the encouraging words...they are food for my soul.  And your tears for, and joy in, my son mean more than I could EVER express in words.  Thank you for being the Lord's hands and feet on this earth.  Thank you again for helping bring my son home.  I am humbled that I have gotten to travel to Buglaria 3 times and that I have been entrusted with this little man, with the beautiful eyes and long eyelashes.  How could anyone have ever given him away?

Someone asked for a before and after picture of Simon....so I am going to leave you with these 2 photos, the first was taken in June of 2012...the second in November of 2013 (after nearly 3 months home)


Commiting to the child in the first photo seems incredbily scary, commiting to the child in the second photo doesn't seem so hard....so what does that say about the orphans in the file photos?  Please don't let the crappy orphanage photos scare you away from saving a child's life....because after 3 months of being home they won't look like that any more...

6 comments:

  1. I love the before and after photos! Simon's smile just melts my heart. He is adorable and precious, indeed. His video brings a huge smile to my face. He has stolen my heart.

    Don't feel bad about taking a step back in feeding. My IA son wouldn't eat, either for a long, long time. Each meal took 2 hours and caused an incredible amount of frustration. Not to mention that for 6 hours a day we worked on eating...and that took away a lot of time that we could have been playing, learning, and developing in other ways. You are doing the very best that you can----actually, the very best that any parent could. I hope that the feeding team will be of help to you.

    With prayers,

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  2. All the comments of this site is very nice. I am Maria i want to share my experience about Speech Therapy so if anyone has any type of question can contact me mh82234@gmail.com or visit my website ::http://www.speechlanguagetherapy.in/.

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  3. You are doing everything perfectly! ((((((((BIG HUGS))))))))))) Keep up the AMAZING work! And I can't wait to hear how your trip with Grace goes!! Wish Tom was coming! ;o)
    Sending ALL our LOVE and prayers!!!

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    Replies
    1. THANK YOU!! I wish Tom was coming too!!! :) Love you guys!!!!

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  4. Hurray! You're blogging again! Catching up here and loving the dramatic difference in Simon's face! Wow! Your work is not in vain, my friend! Love you!

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  5. I am so happy to read these wonderful updates on Simon. He is looking wonderful and so happy! I have been praying for him since before he had a family. I'm just so blessed by your love for him.

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