Wednesday, April 24, 2013

Speech Evaluation, Friendships and Fund

I just want to thank you all for the kind comments I got on my blog and by email.  Sharing about the panic attacks, makes me very vulnerable to criticism and I so appreciate the positive uplifting comments I have received.  Thank you for your openness also!


This morning Selah had her Speech Evaluation.  For some reason, I started crying when we went into it.  That came out of no where also.  Sometimes I cry when we go somewhere that I haven't been to since the accident, but we had no association with this therapy place at all.  We got through all the questions about what she could do before the accident and it just broke my heart.  The therapist was great, (although I can't help but wonder what she thinks about this crazy Mama!)  We had a good talk and she pointed out to me how very delayed Selah was before the accident.  And also how alone in the world she was before we adopted her and how she is loved and cared for by us and by all of the nurses, therapists and helpers that work with her now.  She really encouraged my heart.

She also seemed quite sure that Selah is not far from coming off the trach!  We haven't heard such good news since we were in NY!  She pointed out how well Selah handles her secretions (she doesn't drool) and all the things she can do.  She tried her on a "passy muir valve"  Currently Selah is on a "nose" over the trach that allows her to breath in and out the trach.  The "nose" humidifies the air and cleans it somewhat like our own noses do.  The passy muir valve, allows her to breath IN but she has to breath out her mouth.  It's also called  "talking valve"  She could actually make noise while wearing it.  She had been started on in NY but the "rehab" didn't want her using it and since we've been home, we couldn't use it without a doctor's order for our nurse's sakes.  So now once we get the order tomorrow, Selah will wear it all day long.  She can't sleep in it but she will wear it all the time.  Hopefully we will again start hearing her make noises like she was starting to make in NY.

Going to that valve, is the start of working her off the trach altogether!

Last night her heart rate went up some and she was making a bit of a gurgly noise.  Jon suctioned her but nothing came up.  Her oxygen level was at 100%...this morning our nurse noticed her trach was clogged.  Just like noses, it can get boggers LOL.  Well it was completely clogged all the way down, so she breathed around it last night and kept her oxygen level up at 100%!  So we were proud of her, but we think it scared her a bit as her heart rate was in the 100-110 range which is becoming a high range for her.

Her heart rate is averaging in the 60's at night now!  Isn't that great!!!!

So we had a great speech evaluation and are looking forward to working with the therapist:)

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Please pray that God will provide for her a handicapped van.  It is very hard to transport her now.  We have to carry her out to the van, and then one of us gets into the van and is handed Selah, who we have to put in to her car seat in the back row.  We have to put her onto the back row with the middle seat taken out because sometimes she stiffens up and we don't want to worry about her getting her leg caught or hurt by being too close to a seat.  She can't help at all and can't hold her head up, so it is a huge job to get her in and out.  We are afraid she will be hurt accidentally or one of us will hurt our backs in doing this. 

We need to be able to place her in her wheelchair and wheel her into the van and lock it in place. And it needs to be able to seat all of us and a nurse and be in great condition as I do not want to be stuck on the side of the road with Selah! 

When I ever post any need we have, I tend to get a few nasty emails or comments but this is the biggest physical/material need I've ever had before in my life.  I'm not even asking anyone to donate at this time, I'm just asking you to pray that God will make a way.  We can not take on a monthly car payment and everything I've checked into is very expensive.  When we adopted the girls, we had everything we needed, no one really plans for this type of situation nor do they imagine needing something like this.  We usually save up for the things we need or make do.  Selah can't make do much longer.  She barely fits in to the car seat but she has to have support for her neck/head.  If she is in a wheelchair she will have it. 

God has always provided what we have needed, we are not people who tend to be extravagant at all LOL  so I know God will provide somehow for this too, please pray that it happens quickly though!  Today I was putting her in, and I just prayed that God would help us with this huge need.  And yes I believe everything I have comes from the hand of God, whether we save for it or whether we get a good deal or if someone gives us something....  So I know God will provide this in some way.....

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Tonight I had a call from one of my BFFs Jackie!  Her husband's car had broke down on the interstate and she wanted me to ride up with her to get him.  Thankfully Jon was home early and we have our night nurse so I got to ride with her.  For two ladies on a mission, we had a blast.  We laughed all the way up and back about everything we could think and talk about.  She has a similar humor, realizing sometimes it is better to laugh about something than to cry:)  So I cried this morning and laughed tonight:)   Believe me I have learned that FRIENDSHIP is very important.  I've learned the value of a true friendship and not to take the time together for granted.  In this day and time, it's hard to find the time to connect with our friends, it was great to connect with her tonight:)  Jackie and I have been friends since college ( over 27 years) before we were married, before kids...there is nothing like a long term friendship.  I say I have BFFs and I am so blessed to have several, one I grew up with, several from college and one from the last few years.  Angela, Jackie, Charlene, Meichelle, Jan, Kandi,  they are all from different times in my life, only two of them are close to each other, but they are all precious to me and I am blest to have them in my life! 

My husband kidded me I can't be friends with someone if I haven't known them for 20+ years but that is not true.  When we moved here 7 years ago, I felt really alone and I prayed that God would send me a close friend,  All my BFFs except Jackie lived out of state and now I lived in a different town than she did!  It was hard enough to get time together.  This is hard to explain, but my close friends all are alike in some ways and that is they aren't all "girly girly" and we don't do drama...(not too much at least)  And quite honestly I can't handle someone who is too "spiritual"  I need  down to earth friends!!!!   So I really had no hope that I'd find a friend that I could connect with...but through a "series of fortunate circumstances" I met my friend Kandi....As our friendship grew, we both shared how we'd prayed for a certain type of friend.  And God answered in a completely hilarious way....it's a long story and I'm not sure how to share it but God brought us together:)  I'm thankful that God hears our prayers about all kinds of things.

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A year ago today.................................


 
V (who is now home in America as of yesterday!!!!!!!!!)  Sarah Jon and Selah

 
 
This is me holding Angela the girl we sponser...she is 12 years old.
 

 
I was honored to hold her and swing her.  Please pray that God will send a family for her.  She has the sweetest spirit, so like our Sarah.  She smiled all the time, I couldn't help but cry as I sat there with her.  I prayed that God would send a family for her....I still pray that for her. 

 
So a year ago today, we were back outside and now they were bringing more of the kids out with us.  This was something I dreaded but loved.  I dreaded it because many of the children will never find families....it hurt my heart.  I loved it because it gave us a chance to love on them, even if it was for but a little while.  It was a very bittersweet experience. 
 
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Well I got the first check for the Orphan/Adoption Fund today from he original donor.....AND a friend out in Oklahoma, sent a check in also....all togeher we have $300 for the first child(ren) and we haven't even really kicked it off yet!  I'm so excited.  Tonight it is late but I wanted to share about Selah's day but tomorrow, I will introduce the first two that will be helped through this fund....They are both near and dear to my heart, girls I met and played with in Torez and they have a family coming for them!!!!  I asked for permission to share their story and pictures.  So I hope between now and the end of May we can raise $1000 for them!  We have $300 and I commit to giving  $100 so now we have $400....only $600 to go:)  I'll give details on how you can give both through our church or another ministry tomorrow!  I'm looking forward to being a part of their redemption story!  There is nothing like meeting a child in an orphanage and then seeing them united with a family....NOTHING is more beautiful than that! 
 
God bless you all, thank  you again for your prayers and kind words!  Please continue to pray for Selah!

4 comments:

  1. Don't forget about the Kacireks trying to get Lucia and Cephas home! I'm really glad Selah is improving, and I'm praying for your needs.

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  2. I'm sorry about the panic attacks...there is no rhyme or reason for them....it could be a trigger or could happen hours after something happened. I think that's part of what makes them so hard to deal with. And honestly you have gone through so much it's no wonder. Try not to take it as a personal afflictiong--your body is just reacting to stress in a not-pleasant way. I'm glad the happy meds help! Though when you can a good physical would be important for you since other health issues (something like your hormones being off, or thyroid) could cause panic attacks too (my perimenopause makes me feel anxious at times).

    Lots of prayers always! xo

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  3. It's easy for people to be critical behind the anonymity of a computer :P

    Praying for the van--I can only imagine how much better it would improve your lives! Though I willl say my mom drove one of those "old fashioned extended vans" and it was like a tank--but she got used to it and it carried us around for ages.

    I got a book on grant writing, happy to help if I can!

    Praying for Selah and the movement towards no trach!
    xo

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  4. Saw this link for a contest to win a custom wheelchair accessible vehicle and thought of you: http://www.mobilityawarenessmonth.com/local-heroes/

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