Day 129 FOS ~Rough Day~ Garden pictures

Selah has had a rough day.  She woke up about 5:30 am, I gave her her pain meds and changed a poopy diaper.  Then she was calm and went back to sleep.  Jon got up a little later and she was fine.  But by the time the nurse got her, she was in pain again (I had just given her Motrin as we don't want to give her too much Tylenol with codeine.)  Her blood pressure was high.  She responded to the meds, but was upset off and on all day.  She didn't want to sit up in her chair at all.  THEN her gtube came out again!!!!!!  The balloon had burst, the balloon holds the tubing in.  Thankfully we still had the old smaller one....tomorrow we are getting TWO!  We think that we have just gotten some bad ones.   So tonight we are keeping her on a strict pain management schedule.  She is going to get the meds, even if she seems calm, otherwise it just sneaks up on her!  She will have her casts removed on Friday and changed so we'll see if there is anything going on that is covered by the casts.  She hasn't ran a fever but I just feel so bad for her. 

The boys and I did finish more of the beds in the garden today.

 

Here's me in my happy place:)  The two beds behind me I put in onion bulbs.  And the one on the right side back has potatoes in it  I have 15 square foot gardens.  Each are 4 feet by 4 feet and so easy to maintain.  I also have about 20 strawberries hanging up and 2 handing tomatoes plants and herbs in containers. 

 

Sitting on the swing with the ONE remaining cat I can pet, Henry.  I have Lavender in both of the pots beside the swing and that is a honeysuckle vine behind me. 

 

 

 

 

 I could look across the yard to where the boys were watering the plantings:)  I'm a good supervisor. 

 

Really liked the news about the new Pope.  He sounds like a very humble man.  I love what I read about him "As archbishop of Buenos Aires, he reportedly rode the bus to work, did his own cooking and visited the poor in Argentine slums. Instead of living in an archbishop's palace, he chose to live in a small room in a downtown Buenos Aires home. "   Also "The name Francis is a clear indication of his desire to focus on the poor."  He is very conservative as well as pastoral.   We need ministerial leaders who are humble.....  Like the name he took, Francis, no one is sure why he chose that name exactly but one of Selah's nurses is a Franciscan Monk although we don't know alot about the different orders in the Catholic Church, we know some and like the sacrificial lifestyle embraced by that order. 

 

http://natepyle.com/confronting-the-lie-god-wont-give-you-more-than-you-can-handle/  This is a blog written by a pastor.  A friend sent it to me knowing how much I HATE when someone tells me "God won't give you more than you can bear"   Since that is NO wheres in scripture, it drives me BATTY!  This is such a honest, good post....I've subscribed to this pastor's blogs, I love honesty and sincerity and I see it in his writings. 

 

One more thought before I close....

 

http://everlastingmomentum.blogspot.com/2013/03/our-jonathan-is-arms-of-god.html  This family was just a few weeks from traveling to adopt their son.....he passed away....never having known the love of a family....please pray for their hearts right now....I was so afraid of this happening to Sarah, since she was so obviously weak and frail....I can imagine some of their pain as I too got a phone call telling us the little boy we'd loved had been adopted by another family.  We grieved....but we knew he was going to be loved...of course this little guy is in heaven and has the love of God with him now but it still must hurt this family so much.   Please keep this sweet family in prayer!

 

Please pray that Selah will have a good night tonight!  Thank you for all your prayers for us and for others!!!!!

Day 128 FOS

This is feeling alot like Ground Hog day the movie.  While Selah is in the casts our days/nights are filled with keeping her comfy.  She had PT today but had a tiny bruise by her gtube with a tiny cut in there.  Maybe she did too much yesterday in PT although she didn't seem stressed by it.  I did buy her a manual BP machine that is made for children.  I actually learned how to work it:)  I swear I'm going to be a nurse before this is all done

Some friends called me this morning and invited me to  breakfast...that was nice and a mood lifter even if I did cry some....I've turned into Ms Waterworks now.  My emotions are just so raw right now. 




Shad and Steve cleaning out my square foot garden beds

 

my giant collard greens!  Despite little care they are still huge!  I cut some of the others down yesterday and cooked them

 

 

 Look in the very middle of the picture that is an asparagus coming up out of the ground that took 2 years to grow!

 

Steve and Shad hard at work

 

 

The boys helped me by finsihing cleaning out the garden for me.  I bought a few more plants and some bulbs (potatoes and onions)  Today was a great day for the garden rainy and overcast.  Perfect for the plants I got in yesterday.  Wish I could have gotten more plants in but had to get some more garden dirt for the garden.  I really love having a garden!  I can't explain why but it is just fun and relaxing to me.   Square foot garden or box gardening is so easy.  I also do the container gardens too and lots of hanging up plants. 

Please keep praying for Selah!  She will probably have her casts changed this Friday I hope it won't be too hard on her.  Lookiing forward to the casts coming off for good...3 more weeks!

Day 127 FOS ~ What happened to my mind??

Selah had a good night and has had a really good day today.  Maybe she is in less pain or is getting used to the casts.  She had PT this morning and had no issues.  The therapist was even able to get her on her tummy with the help of some pillows.  She seems really relaxed.  Her nurse took her outside for awhile this morning also.

Sam and Sarah also had therapy, which they both loved.  You could work with them all day they'd be happy.

Shad and Steve had a Science project, called...cleaning the garden:)  Oh I love homeschool:) LOL  I really think they learn alot in doing work in the garden.  They learn character traits as well as actual real stuff that they can use all their lives.  I'm all about being as self sufficient as possible.  I think everyone should have some sort of garden.  It's a great thing to walk out your door and gather veggies and herbs for dinner!  We still have lots of work to do to get the garden back and ready for spring.  Believe it or not I have collard plants from last summer still growing.  I cut them down and cooked two big pots of collard greens.  Also after TWO years I actually have some asparagus growing!!!  The plant takes two years before it produces.  I can't believe it actually has some growing when you factor in how long we were gone last year and the garden didn't get alot of attention.  I LOVE gardening!!!!!  (btw, do NOT worry- the boys have REAL curriculum that they follow!  I'm not unschooling them, not at all!!)

So a good productive day.  I even cooked the filling for my Italian Pie just got to put it in the pie shell and pop it in the oven for supper.  I'm still so far behind on things I need to do, I had my current ADD way of doing things....I'm all about doing something, then a new thing pops and I'm focused on that for the moment and forget about the first task!  I'm driving myself BATTY!   I have no idea how to even focus at this point in my life...I often wonder am I the same person who got a dossier together in just a few days?  REALLY?  Who took over my brain?  I have a GIANT bag of paperwork to work on....I have a file cabinet to work on....oh my gosh there is so much to do....Each step requires a hundred little steps and that is what stops me.  I can never get through all the steps.  When I say I have NEVER been like this.....I have never been like this!  Right before we left for Ukraine last year, I got a big "brain freeze" I couldn't pack or do the day to day stuff I needed to do.  I thought that was bad and unlike me, THIS is one hundred times worse.....  I have no idea what is going to happen to get me through this.  It's like being paralyzed.  I'm trying to do some of the "outer edge" stuff like work on my garden, clean out the bathroom shelves ( I told you I have a real problem)  so maybe I'll feel like something is in order, so I can move on to real stuff that needs to be done.....  I don't know.....  Again that minor in Psychology /Pastoral Counseling comes in again.  I'm really good at diagnosing myself, wish I could bill my insurance LOL

Please continue to pray for Selah.  I was giving her kisses today and she turned her head towards me:)  I don't think we're going to see alot of new things till she is off the extra meds and her casts are off but I'm ready for some things!

Day 126 Fish Oil study Pictures:)

 

Selah in her new outfit...in bed!  She had a rough night, just seemed to be in pain or agaited with the casts from about 3 am on.  The nurse got her up this morning and she stayed up in her wheelchair for about 2 hours but started making her "I don't like face" in church so she went home and was happy and calm once she got back in bed.  I know the next three weeks are going to be hard for her with the casts.  She hated shoes, I can't imagine how she feels about the casts.  We have to keep her moving some but it's hard when she gets upset. 

 

 

This is Selah last night before she got upset.  Could she be any cuter?  I think she is just such a sweet doll.  We actually worked with her with a pacifier yesterday and today.  She did hold it in her mouth some.  At one point we thought she might have sucked on it, but we are working on it as it seems to strengthen her tongue muscles just having it in her mouth.   We will try anything to encourage her in any area!  I have NEVER bought a pacifier for any of my kids so I didn't even know what kind to buy.  There are actually ones made for kids up to 3 years old....geez!  Well now I have bought one and hopefully it will encourage sucking/swallowing:) 

 

 

 

 

 

Steve put Sarah in a box yesterday and we wrote on it From: Ukraine:)   She loved being in the box!

 

 

Look at her sweet smile!  Sarah smiles so much.  She just loves our attention.  What we are noticing is she really only wants me, Jon or sometimes Steve.  She has no issues with correct attachment to her family.  Sometimes I think maybe just maybe she had a good caregiver, someone who loved her when she was in the baby house.  She was not treated very good at the institution and her caregiver could hardly stand to touch her.  I don't know how Sarah turned out so very normal emotionally....yes she is mentally and physically delayed but emotionally she is so very normal.  It's a mystery to us how she escaped from hell with so few scars on her emotions.  Sarah is not even as tactile defensive as our biological son Sam.  It took years of therapy and me working with him before he could tolerate much touch and obviously he was with us since birth.  Most kids who are blind are very tactile defensive, but not Ms Sarah!   Selah did not escape emotionally untouched.  .  She has been diagnosed with institutional autism, prior to the accident.  Selah escaped away in her mind....She was just starting some healing when the accident happened.  I think Sarah was just on the edge of becoming like that when we came.  She was very weak physically and had not been given any time out of bed.  The first few days she didn't want much touch, after that she was all about us holding her.  She would just lay in my arms and try to focus on my face with her little eye.  There were a few days we couldn't go in and see them and Sarah would be mad the next time we came.  I truly believe that in her own little way she cried out to God and God worked in supernatural ways to have me see her picture and then be so moved that I couldn't sleep.  Sometimes she makes these Sweet little happy sighs when I'm holding her and it just makes me want to cry, knowing some  of the things she endured for all those years.....

 

 

 

Sarah after church today with Ziggy.  He and his wife Anita have an amazing story of fleeing East Germany in the 1960's!   We love having them down during the winter and we love to hear them sing:)  They are my favorite East Germans/West Germans/Canadians/ Snowbirds!! 

 

 

Please keep praying for Selah she still has 3 weeks left to be in casts.  I really don't think she is in alot of pain as much as the casts just bother her.  I had three foot surgeries last summer and one that was very deep to relieve nerve pain (too much walking)  after the surgery, I had very little pain.  Her surgery was more surface level, so that's why we think it is just the casts based on my pain level.  I hope that is it at least.  It hurts me to see her upset but I am so very thankful that I can tell when she is upset.  She makes a FACE and even will cry sometimes.  I'm thankful that she can show all that emotion. 

 

Day 125 Fish Oil study

Selah had a good night and today has been great.  She is obviously uncomfortable if she is moved around much but she sat up some in her chair and she sat in the new wheelchair some.  I will take pictures tomorrow.  She is really calm, of course she is on some stronger pain meds. 

We've been working outside all day.  Steve and Shad did a good job.  Steve and a guy from our church mowed the yard.  Then the boys mulched all of the church flower beds.  They also worked some on our garden and now we've just finished cleaning the church. 

I'm feeling like life is overwhelming again as I have so many things "to do"  Every time I start something I get interrupted a hundred times and then I am too overwhelmed to finish....  I HATE being like this!!!!  It's not me and I know it is a sign of stress.  I have a big bag of letters/paperwork to do, coupled with the things I do for the church, cleaning my house and trying to be organized as much as possible is just freaking me out at this point.  It's like everything has 25 steps to do to finish it..... I NEED help!  But then again most of the things, I can only do myself.....but there are some things I going to start asking for help with, like things at the church.   There are so many things I need to get done in the next week or so.....

Thanks for your prayers for Selah....please continue praying that she will stay comfortable as she heals. 

Day 124 Fish Oil Study

Thank God another peaceful day.  She was up in her chair for a few hours with her feet on a foot stool and she did good.  She is rather out of it with the drugs but peaceful.  I worry about her regressing but I think once she heals and the casts are off, being able to weight bear on her feet and all the wonderful things her therapists has for her will make up for the time she is losing this month. 

I love to take care of her.  It does bring me a sense of peace to meet her needs and love her in a tangible way.  Through the past 7 months,  I've had to share her care with so many others and even tho she needs alot of care, I'm happy to give that to her at night.  I'm so glad we stopped having night nursing LOL  Who'd ever thought I'd ask to lose night nursing after fighting so hard for it?  But it is easy enough, even on the more challenging nights to take care of her and just be a family. 

I love Selah so much, sometimes my heart just bursts inside of me.  I HATE that the accident happened and changed our lives but I will always love and care for her.  I think we are more committed to her than we were on the day we adopted her, if that makes any sense.   We almost gave her the middle name of Jewel and now I really wished we had!  She is like a jewel...before she was hidden away and no one knew about her.  She wasn't one of the "poster kids" no one had her picture but God never forgot her.  Now she is our daughter and we will always love and care for her.  We promised to give her a family "no matter what" and now we have faced the "no matter what" and we are committed to loving her and taking care of her.   We would have never ever chosen for this terrible accident to happen to her....but we will still give her a family and the best life possible.  We will never stop praying for her nor will we ever stop trying to find ways to help her medically!!!  I believe God gives doctors wisdom to treat people and just like with Sam there was ONE doctor who could help him....maybe there will be ONE doctor that can help Selah!  I will never stop trying.  We believe the fish oil has helped her and we are hopeful as we are right at the 4 month mark that after this month is done (with the casts) and we can back off the meds again that we will see some more cognitive and physical improvement. 

I really want to look into HBOT therapy but it is expensive.  We will see....right now I want to get her through this month.   I need to do some paperwork and enroll her in some different programs and school (home bound) then I'm going to look in earnest at HBOT therapy.  I'm pretty good at finding granst and things like that.  I don't think either of our insurances would pay for it.  I did fill out one grant already but haven't heard back from it....

 

Today we got a loaner wheelchair for Selah (although Sarah was trying it out and liked it)  There is a ministy here that helps adoptive and foster families and a friend had put me in contact with them.   This wheelchair is one I'd looked at before years ago for Sam but then we went with a really nice jogging stroller called a BOB.  BOBs are expensive but not as expensive and they are easier to fold up.  Our nurse thinks this will work better for Selah once she is up.  So we gave them our old  BOB since the company had been so kind as to send us a replacement double one after the accident and a new single one too.  (someone contacted them for us)  Right after the accident, I wouldn't even use a stroller and I'd carry Sarah everywhere (she doesn't walk at all)  and we made Sam walk more (which he hated)   But now I'm ok for the most part with it.  I've told myself that if you have a car accident, that doesn't mean you never ride in a car again....  We are just extremely safety conscious ...which we were always but in a way now that is probably bordering on neurotic, if you hadn't gone through what we have gone through.    

  Selah has been measured for a wheelchair but it is taking so long,   The nice thing was I had gone through all the girls and Sam's things and was able to give them a car load of things including some diapers that the kids had grown too big for that I had stored up.   I love cleaning out closets and drawers...I'm the exact opposite of a hoarder...but I do stock up on things if I have coupons.  BUT if it hasn't been used in 6 months (unless it is canned food) it is GONE! 

Please continue to keep Selah in your prayers that she will heal quickly and tolerate the casts. Thank you!


http://kacirek.blogspot.com/2013/03/i-waited-long-time-going-deeper.html  I want to leave you with this blog to read.  It is a family who is adopting two children that both were in the same institution as our girls.  The boy has major medical issues but is not as delayed as our girls are mentally.  He spent a lot of time with us when he was out of bed.  He would tell us "Good morning" in a very serious tone and you could tell by the look on his face that he wished he had a family there too!  Well now he does and this blog is written so beautifully.  Just makes me happy/sad...happy that he has a family...sad that he waited so many years but now he will never be alone again!    This mom also is the director of Grace Haven Ministies that has a grant in place for the sweet "Sally" http://myreallifebyyvonne.blogspot.com/2013/02/day-106-fos-sally-has-family.html  If you can give towards her adoption I would be happy happy happy!   (yes I love Duck Dynasty)   Sally has a family coming for her:)  I LOVE to see children being plucked out of the darkness and loneliness of a orphanage to be loved and in a family!!!!  And it is even more precious when I know the children myself! 

Day 123 Fish Oil Study

Selah had a perfect night and I got to sleep too:)  She has been comfortable most of the day and has tolerated it when the nurse moved her around.  We are so thankful that she is doing as good as she is!  

Today I cleaned out the little kids stuff, as you know with little ones it is a never ending job.  I made myself go through the girls' clothes.  I feel so cheated with Selah, she went from a tiny girl in August wearing size 3 toddler clothes to a big girl wearing size 6/7 clothes.  It's not just that she will never be able to wear the cute little clothes I had for her...it's just every outfit has a memory for me.  I did dress the girls alike sometimes but they are different and Selah liked more girly clothes and would look at herself in my big mirror and pat her clothes....  I can't give any of those special clothes away.  I hadn't been able to do the closet cleaning until today.  Tomorrow I'm meeting with a lady who has a ministry to foster care kids and adoptive families.  They are giving us a nice wheelchair to use and I am giving them a bunch of things.  BOB strollers sent us a brand new double BOB and a new single one too so I'm giving away my original BOB.  So I wanted to donate alot of clothes as the girls grew so much while we were away.  Sarah grew too but it's not as hard going through her things.  I guess because everything with Selah is so poignant.  I was very sad going through things....  I'm not one to be really sentimental over "things" especially clothes but I just held some of them in my arms today and fought back tears.....

This afternoon I finally took Sam to buy a new pair of shoes and Shad ended up with one too even though that wasn't planned.  LOL  Shad has a way....   I bought Selah a few more big girl outfits that she can wear while she has casts on.  She is going to be so cute in them.   I have to look towards the future and focus on NOW or it hurts too much.



Here is Sarah after her bath and blow dry tonight:)  I finally got her pig tails up good:)

 

She usually smiles but she was very serious.  She how she is holding her hands, Jon taught her to do that:)  She is SUCH a daddy's girl.  He was holding her the other night ( as usual) and she wouldn't let me pick her up!  She clenched her fists to her side and made a squawk:)  It was cute. 

 

 

 

And in other news, Sam has a Loose tooth!!!  Part of Sam's anomaly is that he physically matures so very very slow.  Even slower than most kids do with Peter's Anomaly.  He just turned 9 years old and has never had a loose tooth.  He didn't get a tooth until he was almost 2 years old and he got his bottom 2 teeth.  His dentist was amazed and still is....we saw him last summer and Sam got xrays and the dentist said that Sam's mouth looked like one of a 4 year old.  It is very odd and interesting.  We assume that everything will be much later, puberty too thank God.  Sam is being studied to see if he has something unique that actually "slows down" his physical development.  Like he has been drinking from the Fountain of Youth:) 

 

 

It's the tooth that is back a little in his mouth

 

 

 

 

 

 

 

 

Life seems so unreal to me.  We are dealing with so much every single day and yet life still goes on.  We try to make our life as normal as possible for our other 4 kids.  Sure things are very different but we try to balance things.  Selah has a nurse and her own separate room now but the kids all drift in and out and have gotten to know and like our nurses.  We've just incorporated things into our lives without making too big of a deal about stuff. 

 

I can remember when I was a young girl about 12 years old and my uncle was dying.  Everything was done so mysterious and secretive.  My whole life was turned upside down but no one even thought to think of how things were affecting me.  Me?  I just shook...that's how I handle stress is I start shaking from the inside out.  Obviously our case is different but we try to make things seem NORMAL for the kids.  I really don't think they've been affected in a bad way through all of this.  Between God's grace and the love of so many towards them and our attempts to stay calm with them even at the worst of times, they've done well, thank God.   Sometimes I don't want to do "regular" family things like go see a movie or go out to eat but I have to remember it is their lives too and they have to have the same stability as they did before.  If it were up to me, most days I'd just sit and hold Selah or sit by her bed and watch her numbers....but that's not the best for everyone else and Selah might get a bit tired of me too.  It's a balancing act, this is our NEW normal and it's not going to change outside a mighty miracle.  But I still have 4 more kids who need attention and care and normalcy. 

 

I have to brag on all of them, they have handled everything with grace!  Steve and Shad have been just wonderful through it all.  I can't say enough good about them.  I appreciate the two of them, both are mature far beyond their years when it comes to handling crises.  And even Sarah and Sam have done remarkably!  Sarah having just been adopted herself and dealing with all the change, just learned to go with the flow and still attached to us beautifully despite living in a Ronald McDonald House for 4 months and Jon and I being back and to to the hospital.  She is an amazing little girl!  She likes everyone but she LOVEs me and Jon.  I don't know how much she understands but there is no doubt she knows we are mommy and daddy.  Sam has matured so much.  He went from being "the pet of the family" and the baby to living in another  country for 6 weeks and handling all the travel with aplomb!  Then he did great with the girls and enjoyed them from the get go!  Then he dealt with his being in the accident with Selah and recovered without any emotional issues.  He also handled staying at the RMH and all the back and to very well.  Everyone tells me how he has matured during all of this.  He is very delayed but it seems like he has just really made some efforts.  He has more patience if we don't do "hop to his demands" (usually about food LOL)  He will even sit in a restaurant and not get upset waiting for his food.  That is really big maturity for him. 

 

Please keep praying for Selah to heal physically and mentally....I'm really missing my little Selah tonight since I can't really even hold her much right now.  Pray that she stays comfortable and that this time will just pass as quickly as possible and soon she'll be out of her casts.