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! 

Day 116 Fish Oil Study ~low oxygen stats

Please pray fro Selah her oxygen stats have been up and down all day which is unusual for her.  Her nurse even turned on the oxygen in her humidifier to be on the safe side.  She has no fever, and her secretions are thicker but not really bad.  I am about ready to call the ambulance but our nurse assures us that this is "ok" not great but not terribly dangerous either.  It is just different for Selah. 

As of today, we are not having regular night nursing.  We may have someone work a couple of nights a week but we have decided we want to just be a normal family  at home at night.  There comes a time when privacy is important and just the feel of normalcy.  So of course Selah decides to act up tonight!  I can't believe I don't want 24 hour nursing, but now that I've had no night nurses for 4 nights in a row, I found we like it better without anyone here.  I've learned to do everything for her and it feels good to be the one knowing what is going on and meeting her needs.  I might change my mind after tonight tho!!!!  

So please keep Selah in your prayers and pray that her oxygen levels stay normal all night long!  Thank you!!!!

Day 115 FOS ~ Great pictures and an answered prayer

Last night I had just finished writing my blog and had just logged off when I went into Selah's room and saw this.....

 

So I moved her a tiny bit and the ONE hand went right back to her mouth!

 

 

Then I totally moved her to see what she would do and the hand went back and she made a sucking sound!!!

 

That is PURPOSEFUL movement!!!!!!!

 

 

Her nurse had also seen her do it earlier:)  She hasn't done it yet again but she did it for over an hour!!!!!!

 

 

Today was a great day and here is Selah working out on tummy time!

 

 

She is rocking her new shirt:)

 

She has grown so much since the accident, from size 3 to a size 6 or 7!  No muscle atrophy with this kid!!!

 

Today was just wonderful for Selah and she is more and more alert every day.  She still needs prayers but being off Valium for almost a week now is the best thing ever!  I'm all about less medicine if it can be done safely!

 

Here is Sarah on her Christmas present !

Going....

Going....

 

Gone!

 

She LOVES this "peanut therapy ball"!  Thanks Bell Shore Baptist!!!  This is her absolute favorite thing to play with/on.  She can see it from a foot away which is shocking but we've tested her and she lunges for it a foot away from her face!  Of course it is BLUE and big:)  She spends hours a day on it!

 

 

Brotherly love (with daddy laying on the floor playing with Sarah in the background)

Awww

Shad carried my books at the library today.  I am reading with my reading material if Selah ends up in the hospital after surgery.  We are hoping for an out patient procedure and will find out on Friday.

 

 

Sam has learned to squat, he thinks it is funny and is trying to learn to jump like a frog:)  This is a boy who didn't walk until he was 3 years old:)

 

I have all these great pictures of the little ones but none of Steve, he has been so busy doing schoolwork.  He is amazing me with his love/attention he is showing to Russian.  He will work on it for hours.  If we ever go back he can be our translator:) 

 

Homeschooling has gone smoothly, I just checked Shad's tests and he made 100's on 4 of them and only missed one question on Math.  They both have applied themselves like I've never seen and it's making it easy for me.  Steve has made a B or above on all 7 of his tests he has already taken !!  I'm really proud of my boys!

 

So please keep praying for Selah!  Pray that she will continue to make the thumb sucking motions.  I never thought I'd want one of my kids to suck their thumb but I do!  Sucking is great, she was doing it in NY but like many other skills she didn't do in while in the "Rehab" hospital.  She was never given a chance to do so.  It made her swallow last night.  The hand movement is BIG and if it continues a major good thing.  I know kids often do something, to never do it again when there is brain damage, Sam certainly has done that but I'm praying that this will continue with Selah:)

 

 

Day 114 Fish Oil Study ~ Great Day!

What a GREAT day today:)

Our PT was able to come again today and she worked with Selah for an hour!  She put her on her tummy.  The way she did it was to put a Baby Boopy pillow that I had found at a thrift store under her and put her on her knees and elbows.  We used a small exercise ball (the kind that is small and weighted) for Selah to put her forehead on and she did great!  It's really good for her posture and back and everything.  Her knees bent so nice and it didn't seem to bother her.  She just looked so good, I was so excited to see her "working out ' like that. 

The therapist also worked with Sam and Sarah and they thoroughly enjoyed themselves, they were happy, happy, happy! 

Steve and Shad are doing great in homeschooling, I have to admit I was a bit worried but it's gone good.  Shad is flying through things and very serious about his work.  He really wants to get far ahead in his books .  Their curriculum lets them work at their own pace.  Steve is enjoying Russian.  I can't believe it.  He is so into it with his headset on and is mumbling Russian words over in the corner of our living room (the only place the wifi works in the house) 

Shad and I had dentists appointments today.  We've had exceptional dental insurance for years and we take great care of our kids' teeth but I HATE HATE HATE the dentist!   Everyone tells me I have such nice looking teeth....I don't understand why they look as good as they do because I only go to the dentist about once a decade because I have a tooth that needs to be pulled.  Well today I "put on my big girl panties" and had my first teeth cleaning.  Ok sorry if that grosses you out, but I'd never done it before and really had to use some calming breathing techniques to get through it.  I also have some gum loss and had to have antibiotics put in my gums at a few places.  But all in all for as little tooth care as I've had, my teeth were pretty good. 

Let me tell you why I have such a fear of the dentist....when I was a little girl back in Perry, we had only one dentist that I knew of...another one came when I was a teenager but ...by then I was scared!  Dr P was above the Old Emporium (our "everything" store)  and you had to get to his office by walking up the longest, steepest, staircase.  You'd go into a tiny office and sit and wait....then you'd be ushered back by his receptionist, our neighbor who was one of my good friend's mom.  Then you were in THE chair, terrified...I am not sure he even used Novocain or anything to take out teeth or to fill cavities.  It was awful!  It's funny I've reconnected with many childhood friends and we have all shared our TERROR of the dentist TO THIS DAY!   I've blocked out many memories of going there and for some reason it seemed my aunt was quite faithful to take me to the dentist.  Of course we didn't have fluoride or anything in the water.  I remember in school, all of us having to take fluoride in class and swill it around in our mouths and then spit it back in the cups.  Anyway I have such a phobia about dentists but going to our dentist with the kids has helped me.  We've been going there about 2 years before we took our kids to a pediatric dentist but he was too far and his waiting room was always total chaos so we switched to this family dental place, Bright Now Dentist  in Wesley Chapel.  I thought if I was taking the kids there, it would make me go, well it took awhile but I finally did go!   They've done so good with our kids and been so sweet to us that I just began to trust them.    Anyway I have sparkling clean teeth tonight and have conquered my fear (to some degree lol) 

Then Shad and me went to Sam's and bought all the fun frozen stuff.  It was nice to have time just with Shad and we had a blast.  I LOVE going to Sam's, my whole "Doomsday Preppers" personality wants to come through when I am there:) 

Tonight I came home and cooked a meal that I LOVE ~ Spinach Shells  I'd been craving that for months!  It's so good and easy

Box of big shells
frozen box of spinach ( or you can cook down fresh spinach- I do sometimes.  If I am using the          frozen kind I get the straight kind, not the kind that is creamed it's healthier)
bag of mozzarella cheese (i usually buy the fat free kind)
16 oz carton of ricotta cheese  (again usually the fat free if I can find it or reduced fat)
3 eggs ( egg beaters)
oregano  ( i probably use 2 or 3 tablespoons full I love it)
Parmesan cheese ( kraft reduced fat- 3 tables spoons)
pepper (as much as you want)
jar of Basil Pesto
olive oil

cook and drain the shells
combine all the ingredients except for the pesto and olive oil  I use the mixer, it's faster
spoon the mix into the shells
Spoon the pesto over the shells-it's thick so you might want to break it up with olive oil, I actually do about half and half. 
put in a big casserole dish and bake for 30 minutes at 350 degrees

ENJOY!  I did garlic bread and a salad with it ....YUM!!!!!!!!

This actually makes me two casserole dishes so you can freeze one or cook both.  Since Jon and me are the only ones who will really eat this in our house I usually freeze it.  the kids ate turkey sandwiches...silly kids!

Please keep praying for Selah....

The last two days I've woke up with a peace about things.  I'm beginning to enjoy Selah where she is at more than I mourn what she lost.  Thank you all for the prayers for me!   This is quite a journey, one I've never been on and one that is lonely.  Life's responsibilities weight on me heavy at times.  I don't know where things will end up with her recovery.  Someone asked in the comments "how will we know when she wakes up?"  Its really hard to explain.  I ask different doctors and get different answers.  Some say she is out of the coma and in a Persistent vegetative state and some say she is in a Minimally Conscious state (which is better than the PVS)  I don't know where the coma ends and the brain damage begins......  I had an idea of what a coma was before this, now I don't know!

BUT we will know her brain is repairing itself when she begins to do more things and make progress.  She had regressed so much while we were at the Rehab Hospital that I feel she is now just making up for the lost two months!  She is swallowing now throughout the day like she used to in NY, she is more responsive again like she was while in NY and much much calmer and has an easier time dealing with stress. 

I'd LOVE to see more Purposeful movement, eyes that always responded to a threat, much more SWALLOWING and a gag reflux!  Please pray for that for Selah!!!