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. 

Selah's home! God protected us today!

 

Selah dressed and ready to go home!

 

Selah is safely home and asleep.  She had a good night last night thank God and seems to be doing good now.  Since she has large casts on her legs I had to go buy her some new clothes today.  She had already outgrown just about everything we had gotten before the accident.  All of the new things I've gotten her were shirts/shorter dresses and leggings.   She won't be wearing leggings right now so I found her some longer dresses at Old Navy.  I found the cutest dress at a thrift store from Old Navy and I tried there this morning hoping they'd have something else like that and they did.  Doesn't she look sweet?  Although she was not too happy with me when i took that picture, we'd just given her a bed bath and shampoo.  She sticks her tongue out when she is upset.  Other than that she has learned how to keep her tongue in most of the time. 

 

Shad went with me to pick her up so he could sit with her in the back and watch her as I drove home.  I have come a LONG way in the past 8 weeks!!!  In the beginning I wouldn't transport her unless she was in an ambulance LOL!  Traffic was terrible and very slow on I-275 north until we got up aways and then everyone sped up.  All of a sudden traffic skidded to a stop, right in front of me and cars were going off the side of the road.  I didn't know what had happened but knew it was bad and knew we were about to have a very bad wreck!  I screamed "Jesus help me" and basically STOOD on my brake to stop the van.  I was able to stop inches from the back bumper of a SUV.   A vehicle ( I couldn't tell what it was but a bigger one) about three cars in front of me had blown a tire, went across the road and landed in the woods upside down on some trees.  I think someone was thrown from the car.  It was awful!   I couldnt' stop to help since I had Selah in the car but many people did stop.  It is a miracle there wasn't a big pile up involving dozens of cars.  I was fighting tears as I doubt the person(s) lived that were involved in the accident.  I was very thankful that we were spared and I know our brakes work great.  My legs were still shaking when I got home about 30 minutes later.  Also on the way home, there was a forest fire and I had to drive through deep smoke with ash raining down...it was an adventurous ride home today!

 

(this was in Pasco Co between Wesley Chapel and Zephyrhills)  Not near my house at all

 

So after a long day, I'm glad we are all under one roof once again.  Selah seems peaceful and not too stressed, although her heart rate is like 110-115 while sleeping which is too high but not awfully bad.  I'm hoping she will sleep tonight as I am worn out and want to sleep too:)

 

Today the reality of how just a few seconds can change your life hit me in the face again.  Actually on the way to pick Selah up, coming off the interstate on to MLK traffic was stopped and I didn't notice it at first and almost hit a car too.  That wasn't as serious but it's crazy that the same thing almost happened twice to me in one day.  I'm a good driver, clean record so to have two near misses today is eerie!  But I could be in the hospital or worse tonight.... a few seconds can change your whole life....

 

Thank you all for praying for Selah and please continue to pray for her.  Pray for her to have peace and to not be uncomfortable.  She will have to have a cast changed next week as she has had some bleeding, not too much and expected by the doctor (not by me)

 

 

 

Surgery!

Selah's surgery went great.  The doctor feels it was successful and should heal perfectly.  There were very few pediatric surgery cases today and Selah was treated like royalty:)  Yeah St Joe's!  She went in on schedule, the surgery was finished before schedule!  Selah was so upset in recovery that they really had to give her lots of drugs to calm her down.  I don't think she was in pain as much as she was ticked off about the casts.  She tried to left her right leg up and down a few times, which was cool but she had her crying face on and had a few tears.  I felt so bad for her!!!

I decided for her to stay so they could manage her discomfort and they had her up to a room in just a few minutes.  What was so nice, her nurse had taken care of her before and so had the aide and they were both really sweet ladies.  I left late this afternoon to take my friend home and to pick up Selah's gtube (but it never came)  Selah finally slept all afternoon.  She is still sleeping and I've asked them to give her as much meds as possible tonight.  I'm not into giving drugs but she is in pain and upset about the casts.  Selah is very tactile sensitive, which means she hates stuff to touch her or be on her.  The casts are going to drive her crazy.  They are on for 4 weeks, I have a feeling it will be a long 4 weeks for everyone. 

I was able to hold her on my lap for a little bit and with the casts on, her legs are pulled down by gravity which makes her knees bend naturally.  The doctor told me that would happen and it looks beautiful.  I kept saying "look at those nice knees!!"  Since she keeps her legs straight most of the time, it was nice to see them so rounded.  I can say I"m already seeing a positive from the surgery. 

Changing the meds around last night was the answer to her blood pressure problem.  She slept all night last night (which means I did too!!!!!)  I woke up at 6 am all discombobulated :)  I went in to check on her and her oxygen level was 100% and her heart rate 78, which was perfect:)  I may not see a low heart rate like that for a month though! 

PLEASE pray for Selah that she will recover quickly and that she will be able to tolerate the casts on her legs!  I know that is the hardest thing for her.  She is very upset about it. 

 

Her is a picture of Shad, Sam , Jon and Sarah watching "The Bible" on tv Sunday night.  It was pretty good, not 100% accurate but we had some good discussions about some of the parts.  I really like the beginning, the creation part.  What an awesome God we serve, the One who created the heavens and the earth.  If you wonder, I believe in the literal interpretation of scripture.  If it is there, it happened.  I don't believe Jonah and the Whale was an allegory like Mr Bill O'Reily does (even tho I like to watch him)  I believe in the Beginning....all the way to the End ...and I look forward to the End of the Bible....when the God who created the heavens and the earth shall wipe away the tears from our eyes, there will be no more death, no sorrow, nor crying, neither will there be pain, for the former things are passed away...Read Revelations 21 and 22....  What a day that will be....I look forward to that day, especially today, I look forward to that day....

 

Seeing Selah in pain/being uncomfortable is heart wrenching and I hate it so very very much.  It may seem like a fairy tale to some who read this, but knowing that there is coming a day when there is no pain or sorrow for my children who have had to face so much over their lifetimes, gives me something to hold onto.  There were several times today I just wanted to break down and have a hissy fit that my poor little girl was having to go through one more thing...  That wouldn't do any good and probably would make the staff think they need to call for a psych consult for me!  So I reminded my heart this verse that one day God Himself will wipe away the tears from our eyes and that there will be no more pain....  I thank God for the promises He gives us!

Day 120 Fish Oil Study ~ Getting ready for surgery

Whew another rough night!  This is how it goes, the nurse gets her all settled and her food pump on and her meds given, she falls asleep....I go in at 9 pm to give her the next med and to change her diaper and all heck breaks loose and she won't calm down all night!  Last night her Blood Pressure got dangerously high, I think it was like 147/130 That is BAD news, when the top number and the bottom number are high and close, you can have a stroke.  I gave her the meds and it came down but she never really slept and neither did I !!   It's harder taking care of her at night by myself BUT in one way I'm comforted that I know I'm not making any mistakes or stressing her out.  I know the things that bother her (like too much touch, bright lights, too much talking, etc)  so I know if she is having an issues, something is really going on.  My nurse talked to our wonderful pediatrician about it and he just moved her meds around a bit.  At one point, every 12 hours was too close to give her BP meds because her BP would be too low for the meds but if you waited too long, then she'd go too high...it's a balancing act for sure!  So they are trying a new time to see if that will help her. 

 Today we went to see the ENT, waited in the lobby for quite some time.  When I got back in the room, first our medical supply company called and I had to deal with that as we HAVE to get her new gtube.  Then the hospital called right when the doctor came in and she walked out rather in a huff.  Then as she was coming back in the door, the hospital called AGAIN to change the time for us to be there and she got angry at me for taking the call!!!  That did not go so good!  I told her that she had wasted MY time in the waiting room (not to mention put Selah at risk with all the kids in there) and the hospital was trying to get her details scheduled for the surgery.  (my nurse mentioned after we'd left that if the doctor had seen us on time, then we would have been done with her BEFORE the hospital called)  The doctor was young and had a resident with her so I guess she needed to "show off" her "God" complex......I told her it wasn't like I was on the phone with my girlfriends deciding what time to meet for lunch....do NOT mess with me when I've not gotten good sleep for 4 days!!!!!   I was NOT impressed at all with her.  I don't think I've ever taken a call in a doctor's office BUT these were both extreme time sensitive situations and I felt she should have worked with me.   She asked me if I thought we could work together and I told her "I doubt it"  LOL  but I let her exam Selah and she did say her trach was in good (she scoped her) I was proud since that was my first unassisted (at all) trach!  I did it with no one else touching it.  In the hospital they teach us to do it with 2 people but I liked learning how to do it by myself, what if I were alone?   It gives me more confidence!

We did get a list of providers who maybe able to do the kind of speech therapy that Selah needs to get off the trach:)

So tomorrow Selah's surgery is at 10 am for her feet/ankle surgery.  A friend from church is going with me.  I don't know if Selah will be admitted overnight but I"m thinking she will.

A good long term friend who now lives on the other side of the world from us, sent us a gift for Selah.  It was just what we needed to buy her an extra gtube to have on hand in case we ever have a problem again.  Insurance will only pay for her one every 3 months.  We think the fish oil we give her eats away at the plastic bubble and causes it to burst.  The bubble is what holds it in place.  There was enough left over to order a kids size blood pressure kit.  I've been using an adult electronic one but have to return it and they don't fit as good for someone as small as Selah.  The adult one would measure up against the manual one but the manual is the best kind to have and cheaper.   Friends are GREAT:)  And God is good to take care of the details of the things we need!

Don't forget about Patrica/Sally and her grant!  If you can give to her grant since a family has just stepped up for her please do!  http://gracehavenhome.com/?p=639  I want to see her home as soon as possible!!!!!!!!!!  Look at this sweetie the day I met her and fell in love....that is a EIGHT year old little girl with Downs...  she needs a mama and papa!

Thanks for your prayers for Selah and your prayers and giving towards the orphans of this world!

Day 119 Fish OIl Study ~ One less orphan in the world tonight!

This morning Selah woke up at 4:30 am with a higher than normal heart rate.  I changed her and checked her BP and it was high so I had to give her her medicine early again!  We have no idea what is going on other than she seems really alot more alert overall.  She did great all day, went to church with us and was up all day.  She is sleeping with perfect numbers right now, we'll see how she does when I go to give her meds and change her tonight.

It's a cold day in Florida, I guess this is our last little cold snap and then we'll be back to summer:)  I'm covering all my plants up again just to be safe.

Tomorrow we have an early appointment with ENT who is following Selah's trach situation.  I am really hoping to get a good lead on a speech pathologist who can help work her off her trach.  All her nurses remark to me they see her swallowing more.  Just today sitting in her room for about 20 minutes, I saw her swallow 3 times.  We are thrilled that that is coming back again.  She has to be able to swallow her secretions to get off the trach.  She is only on the trach because she is not swallowing enough to be able to handle the secretions and she would get pneumonia from getting that in her lungs.  We've been told about electrical stimulation that can be done to her throat/neck that can encourage her to swallow again normally.  I hope we can get all that set up tomorrow.

We had a scare this morning!  Selah's Gtube came out and the little balloon that holds it in place inside is blown to bits!  Luckily we had kept the old tubing and our nurse was able to get it inside her in time.  It's the craziest thing, the doctor ordered us one and a spare BUT insurance won't pay for you to have but one at a time which can often mean you have to take your child to the hospital if something like this happens.  We can't get the replacement till Tuesday and I'm ordering a spare and paying for it myself!  Talk about stupid insurance moves, don't pay for a child to have an extra one at home, so you'll be billed for the ambulance ride and trip to the ER....  Some folks are able to get an extra one from their doctor or hospital or they order one a month even if they dont' need it...for cases like this.   We are hoping the old one hold out till Tuesday!!  

So this will be a busy busy week....with an appointment tomorrow and surgery on Tuesday.  We're not sure how we are going to figure out the logistics for the surgery, we don't have the time yet but I'm sure it will be early.  Our nurse can't go since she will be admitted as a patient even if she ends up coming home that night.  We had hoped that Jon wouldn't have to miss work, so I may just take her by myself....eek!  I'm getting braver but......we'll see, we'll have to figure it out tomorrow. 

 

 

Last night this little guy...now Issac from the girls institution made it home to America with his new family and became an American citizen:)   HE was one of the children that we thought we might be able to go back and bring home....that was not to be for us but we are eternally grateful that his life is changed and that he has the love of a family!   These pictures were taken on the 2nd story "porch" of the mental institution.  He had not gone outside since he came there but could go out and play on the old toys some.  He did have a wonderful caregiver from Life 2 Orphans that  obviously cared very much for him and urged us to find him a family ....well the family found him!  Thank God one less orphan in the world tonight!  Thank you to his family for allowing me to share his pictures.

Please pray for us as this new week starts, pray that Selah will do fine in surgery and not be too uncomfortable afterwards. 

Day 118 FOS

Selah kicked my butt this morning!  She woke us up at 4:30 am by having some high heart rates   It would go up to 140 (where the monitor is set) and then go back down to the 120's.  This went on for awhile.  I changed her and then had to change her again.  I finally gave her some Valium and gave her her Blood Pressure meds a bit earlier (with in the acceptable time frame)  It did not seem to make a difference.  Her BP was ok but the heart rates continued.  Our day nurse got here at 8 am and then she has behaved all day LOL  Her heart rate has been up some in the 110's and low 120's.  He only sees Selah on the weekend and he feels every weekend she is more alert.  Today she really moved her head and even seemed to make purposeful touch on a stuffed cat.  I tried to get a video but missed it.  Any noise makes her jump, so I think it is a good thing.....it's a new thing at least....

Sometimes it is hard to tell what is good or what might indicate something going on.  If her heart rate is up due to her being more awake, then that is a great thing.  If it is because she is in pain somewhere, that is not good....  She certainly is busy looking around and will catch my eye, hold it for a few seconds and then turn her eyes and head away.  That is what Selah did BEFORE the accident.

You may not know but when we were told about her, we were told she was blind.  We didn't think so even in the pictures, not just because her eyes were normal looking but because she was looking into the camera.  Look at our pictures, how many pictures of Sam or Sarah do I have with them looking at the camera?  It is RARE.   When we met her we knew immediately she was not blind but there was something "off"  We feel now that "something" was institutional autism.  So for her to catch my eye and look away...that IS Selah!   She has done it for awhile with us but she is doing it more with others now. 


Florida is COLD tonight!!!  BRRRR!   I'm covering up all my plants. 

http://abclocal.go.com/kgo/story?section=news/national_world&id=9013368  Did you hear about the man swallowed by a sinkhole in his home?  CRAZY story happened less than 30 miles from our home.  Florida has lots of sinkholes, some are small, some fill up with water and people swim in them but this is unbelievable!   Evidently it opened up under his bedroom and it hasn't swallowed the whole house yet. 

It reminded me of a story my aunt told me.  Back around WWII she knew a man who was riding his horse in the Gainseville Fl area and the ground opened up under their feet and swallowed both of them.  That story freaked me out for years....and now this!  YIKES!   Sinkholes are not like quicksand or bogs, they are just cracks in the earth and the dirt that is swallowed by the hole is what kills the person.  Living  near a swamp, with all kinds of limestone caverns under our area, makes me a bit nervous now.  Usually it just makes a home unsafe but this story is something nightmares are made of!!

http://reecesrainbow.org/49527/sponsorjack  Here is a link for a family who is desperately trying to raise funds to go and get their son who has Xeroderma Pigmentosum (XP) a very rare and life threatening disease.  This family has had some finaical setbacks in their journey to try and quickly go get him.  They have USCIS approval so I believe that means they are just waiting on a travel date but they need some help.  They have wonderful resources to help him ONCE they get him home but need help in getting him home.  If you can give, even if it were just a dollar, it would help this family!  Thank you and I know this family would appreciate it...and I know this little guy would appreciate it!

Thank you for your prayers for our family and the others that I bring to your attention.  Thank you for giving to these special kids when and if you can also.  And thank you for praying for Selah.......wouldn't it be wonderful if we had an Easter Miracle? 

Day 117 Fish Oil Study ~Lots of stuff!

Whew what a story I have to tell....

So all day yesterday Selah couldn't keep her oxygen levels up stable.  For some kids that is nothing but since she is normally so stable in that area, it was odd.  Then around 6:30 the day nurse took her Bloop Pressure...it was awful, she called me and I thought surely it was wrong and she took it again 135/124!  A
She told me to call 911 as she gave her her BP meds and hour and a half early.  Within 5 minutes Selah was in a normal range, the EMTs came anyhow and checked her out.  At that point her BP was like 99/68 and her blood oxygen level was 100%.  So they left and immediately her oxygen levels dropped again.  I don't think the day nurse really wanted to leave us but she did around 9pm.  From that point on Selah totally behaved!  I sat in her room until midnight and she was perfect, she went to sleep, everything was perfect.  Then we went to bed and checked on her a few times during the night and she was great.  All day she has been fine.....  Yesterday we did have a nurse who only comes once a week and she is more hands on with Selah.  Maybe Selah was just really annoyed, I don't know but she has never had a problem before like this.  Who knows?  It did freak me out a little but I thought "oh well we will just have to deal with this!"  And then she calmed down.  I really thinks she likes just having us with her at night. 

Today she had physical therapy and did absolutely wonderful, great range of motion and she seemed happy or at least not upset by anything. 

Then we had a Pre Op appointment at St Joe's for her surgery on Tues.  She had to have a blood draw and let me tell you what she did......  She turned her head and eyes right towards the person trying to do the blood draws.  They had plenty of trouble and had to try both arms and she turned every time!!!!!!!!!!  That is another HUGE thing.  The "rehab" hospital was so negative about Selah's awareness, we were told she draws away from pain but she doesn't try and find out where the pain is coming from...well she does now and did it repeatably throughout the afternoon.

She also has been moving just ONE hand or the other at times.  That is a very good thing.

Also on the way home in her car seat, she let her head sag and then brought it up on her own!!!!!!

Last night we put the blue tube humidifier on her.  It is the long blue one that you might have seen on her during pictures at the hospital. I laid it down the center of her chest and out towards her feet.   I came in to check on her and she had her left hand wrapped around it!   That had to be purposeful movement because I left her arms at her side. 

We see the ENT on Monday.  He will be following her for her trach and we are going to talk to him about getting her OFF of it!!!  She is swallowing daily throughout the day like she did in NY.  We don't put any liquids in her mouth since the "rehab" stopped that and we don't want to introduce it again without someone who is used to working kids off of trachs being with her.  But now if I just wipe out her mouth, she swallows most of the time!  She swallows spontaneously throughout the day and we all love to see her do it.   Hopefully he can sit us up with someone who can work with her to work her off the trach! 

So we are seeing some really good things and are extremely thankful for each one of them!!!!!  Please keep praying for our sweet Ukraine Princess!  And thank  you all for your sweet messages!  I read all of them and they are very uplifting!