It wasn't me.... Local Special Needs Ministry

Yes I live in Zephyrhills Fl and yes that was MY Publix but NO I did not win the Power ball lottery.....nor did anyone admit to it at church!  I am STILL hoping that it was someone who knows and likes me LOL!  I did find out the average age in Zhills is 49 years old.....and we only have 13,000 residents....it's hysterical to see the store I shop at weekly on the every national news channel!  It's funny to learn all these little things about our town on National TV!


Can you imagine me with almost $600 million dollars?  What would I do?  You know I would work on emptying out as many orphanages as I could...I'd be busy funding families who were adopting!  One of the big factors in adopting is the finances or the lack of finances...  I'd be sponsoring kids who did not have a family come for them.  I'd give to so many mission projects....when you go to Bible College you end up with alot of friends who are missionaries and they all, always need money!  I'd fund eye research and set up a foundation for families to come to the US for eye surgery....in general I'd do alot of the things I'm doing NOW but on a much grander scale! 

Wouldn't that be fun??????  But it didn't happen:(

In honor of no one at church  winning the lottery, I requested the old hymn "Mansion Over the Hillside"  since that is the only mansion I'll ever have.  We were all laughing about it good naturally but we should always remind ourselves of eternal things...ALL this world will one day pass away.  (btw I do not know if anyone actually played the lottery....just that no one won it LOL)

http://www.youtube.com/watch?v=YfZ3qyYnzJ0

You can watch the song sang by the Gaither's....  Love this old song!

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Today after church Sam was quite annoyed with waiting to leave to go eat!!

 

he wanted Shad, Sarah and Steve to "come on"

 

 

 

We waited for Selah to get her breathing treatment

 

Finally out to the van!

 

 

 

 

 

Selah did ok last night.  She actually slept from about 9pm till 5:30 am but then had a small storm.  She recovered within a matter of minutes and was alert all morning.  We took her to church and she was moving her head around and again bringing her head back up by herself some. 

 

However this afternoon, her heart rate is up higher and not too responsive to the meds.  She is border line with it.  It seems like if we sit her up in bed, and bend her at the waist, it helps her relax and her heart rate will go down.  She is a bit red and her temp is around 99 F.  It is just so worrying.  We know we are doing everything they'd do at the hospital and she has had every test the hospital would run and she is on a strong antibiotic.  This just has to run its course for her to get better.  I thought by today she'd be ok.  Very thankful for our day nurse and our night nurse!  If we didn't have nursing, she'd be in the hospital for sure.  I wouldnt' be comfortable dealing with this on my own!

 

Please keep Selah in your prayers and Sam too, he is acting like his bad eye is bothering him again.  It's been tearing up some and he has been a bit grumpy!

 

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FYI

 

Our church is in the process of starting some new ministries.  One that we want to start is a ministry to Special needs kids & adults and their families. 

 

We know many families do not feel their child with special needs is accepted in many churches.  In visiting churches we have felt the same thing.  God forbid if you take the child to the nursery, the workers act like they have no idea how to handle the child, even if you stay with them or they ask too many probing questions.   We've often gotten strange looks in various churches or conventions....it does not make us very happy!  In fact I get very sarcastic and angry at times.  SO.....knowing there are other families facing the same thing, we want our church to be a place where the children and families are welcomed. 

 

Through a process of many things and situations, Jon & I have come to a belief that it is best for children to be in church with their families and not sent off to a "children's church"  We base this on research on why our young adults turn away from their faith.  In the research we have read, it seems to point to young people not feeling connected to their church.  And that often points to the practice of sending kids to children 's church, then youth....it disconnects the family.   This practice of splitting the family up during worship is relatively new (since the 70's) and since its advent, the rate of young adults leaving the church has just skyrocketed...coincidence?      We think NOT! 

 

So to start a ministry to special needs families, it takes us some time and probably needing to be flexible with how that will work and be done.  Some children and adults with special needs may need their own space.  Usually my children sit through the service with no issues but today Sarah could not be quiet.  She kept making her happy noises....on the top of her lungs:)  I removed her to the church office so I could still listen and so could the rest of the congregation:)   So we are not sure how this all will work but it is something we'd like to do.  If you live in our area and are interested in either working in this type of ministry or if you have a family member who could benefit from this, please feel free to contact the church at 352 567 6208.    We'd also like to start a support group for families. 

 

Afternoon update

 

 

 

Selah lifted her head by herself today 2x!  She has just been so busy moving her head and sitting straight up.  Sometimes her head will slump but she is picking it back up on her own.  The nurse saw her do it first and Jon & I came in to talk to her and she did it for us!  I think we scared her we were so loud!!!!!   YEAH SELAH!  Just like a baby, head control is very important.  If she can gain full head control, that will be wonderful!

 

 

 

 

Selah and mommy

 

 

 

Daddy and Selah.  She always responds to him

 

 

In spite of not feeling good, she is doing some great things physically.  Lots of good movement, what the therapists call "purposeful movement"  not just a jerk or a strange movement. 

 

But after all this good stuff she had a small "storm" but she calmed down quickly.  She is doing ok, for her situation.  If we hadn't gone to our doctor yesterday and got her on antibiotics, we will be in the hospital today for sure!  We will be so happy if we can get her through this at home and get her well! 

 

 

 

Sam trying to crawl back in his crib after a big lunch  LOL  he is still all about taking an afternoon nap!

 

 

 

 

For lunch I cooked a big Mexican food meal, then begged Steve to go with me to Walmart as I had to get some big things and I didn't want to have to be picking all that stuff up.   We stopped to get gas and saw a big tree frog on the front of my van!  Evidently he had gone to Walmart with us.  Steve helped me capture him and we evidently got him into a coffee cup  (it was quite a production the frog was not cooperative with me trying to save his life!)   and brought him back home so he can live out his days in my jasmine bush LOL

 

 

So keep praying for my little girl...thank you!

 

 

 

Quick Morning Update

Selah had an ok night.  She slept from 10 pm till about 2am.  Then she was mostly up.  Her heart rate was up and she had to be suctioned frequently. She wasn't setting off alarms but was over 110 most of the night.   Normally she only needs suction about once a shift (12 hours)  So something is going on with her.  But we all feel we are on top of it!  This morning her heart rate is in the 90's and she is up in her wheelchair.  She looks better, no more red and runny eyes and her cheeks aren't flushed.  Her temp did read right at 99.1 but that is not too bad, not really considered a temp.  So we are watching her.  Our monk nurse is here and he is always alot of fun.  He has told her "no hospital!"  She is just acting more normal in the last couple of hours and now she has 3 doses of the antibiotic in her so it should be doing its job!

Thanks for your prayers and kind comments and emails! 


Here is some pictures of Steve hard at work this morning mowing the church!  he is such a big help:)

 

 

Night update on Selah, keep praying!

Selah's nurse and I took her to her pediatrician early this afternoon.  He was wonderful as always!  Dr W is just the best doctor to work with a family to help their child.  He sent us off to the lab for blood work and a chest x ray.  He tested her for the flu to rule that out. He had her secretions checked.   It seems she just has a bit of an infection, just starting in her trach.  He started her on an antibiotic, a steroid, and eye drop because her eyes are red and watery (not allergies) and a nebulizer.  After all of that, right when we got home with her she stormed....not a bad one and she quickly came down from the 160's with her medicine.  We think she had a bit of a delayed emotional reaction to everything. 

Tonight her heart rate is in the 70's and 80's and she already is looking better.  We really feel like all of this has been "nipped in the bud" hopefully and she will not get any worse.  It's right at the 2 week mark.....we are going to see ENT about putting her on a preventive medicine until we can get her worked off the trach.   It seems to be something she needs.  So thankful that we know evidently she will be off the trach ( we all think she will at least) and we won't be dealing with this anymore.....one day! 

It's hard to deal with this but I am so very thankful for medicines to help her when she needs it.  Thinking about how sick she could get, made me very thankful that there are meds that can help her.  Before Sam I didn't think much about medicines or doctors.....NOW I do and it's a real blessing to know your child can be helped.  I get irritated very quickly if we are in a situation where I do not think medical care is up to par.  I do my best to ensure those situations do not happen often with my kids.   But on the other hand I am surrounded by some wonderful nurses who work with Selah and some great doctors who work with all my kids.  We probably have one of the very best pediatricians in the state of Florida.  I've always been appreciative of Dr Whele and his staff at Watson Clinic but today I am overwhelmed with gratitude towards them.  He was leaving early yet took the time to see us as the last patient, although he had to be somewheres else.  Selah takes awhile to go through everything and get all the orders on the computer etc...  He took the time, was not impatient with us at all.  His staff, are just as wonderful and caring.  They never seem frustrated with me for calling them, they are always helpful and kind towards our family.  Today they all worked together to get everything done to hopefully avoid Selah having to go in the hospital this weekend!  It would have been easy enough to not put all that effort into her situation but they went the extra mile (or two) for her and for us and I appreciate it.  They have always been like that for our family.  I can't say enough how much easier they make our lives by being there to care for our children.  God bless all of them and especially Dr W!!!    Hopefully all the efforts will not be in vain!

So please keep Selah in your prayers, hopefully she will respond well to the medicines she is on and for once, not need to go to the hospital!  She regresses when she goes in, in so many different ways.  We can't be with her all the time and that is very hard for me and I think for her too, so it would be so much better if we can ride this out at home.  The good thing is we have 24 hour nursing, that is just focused on Selah.  So it's more than just me and Jon taking care of her, we have several others who can notice if anything changes.  That is a true blessing!  We are hoping for a good night for her with no issues!

I HATE Roller coasters!

I HATE roller coasters, always have....but would fake it when I was younger to go with friends and then sometimes with Steve when he was old enough to ride, but didn't want to go without his mom and dad.

Life seems to be like a roller coaster for us.  I had held off writing that post on Selah until a whole week and then some had gone by.  Well....last night she started having issues!  She usually goes to sleep by 9 pm but she was wide awake and had to poop, several times.  That kept her awake.  She was also sneezing and needing suction which she usually doesn't.  She finally fell asleep for a few hours but she is "off".  No fever but she a bit red looking which usually means something is up.  She is needing more suctioning and she is sneezing and her eyes are all glassy and watery.  She doesn't have allergies that we've ever noticed so we are hoping it's just a bit of a cold.  We have an appointment to go see our pediatrician this afternoon so hopefully he will put her on something that will stop this from going into a trach infection. 

Her heart rate has been up in the 90's and the night nurse said it went as high as 120 for a short time.  She got all her meds this morning including the Valium and I think she is going to sleep until it is time to go to the doctor. 

We really do NOT want her back in the hospital!  Please pray that whatever is going on is nothing big and we can handle it at home.  She has been doing so wonderfully amazing....we don't want to lose our progress!

Thank you!

Speechless..... Day 201 Fish Oil Study

Speechless...rarely am I....BUT...something is going on with Selah!

This sounds so dumb but it is hard for me to describe, hard for our nurses too....she is improving.  Just in the past week and a half there has been such a big big change in her. 

Her tone (how tight or loose she is) is almost normal everywhere but her legs/knees and the PT says she gets 90% range of motion there when she is working with her.  Her ankles and feet are great.  When she was sick and in/out of the hospital in April, her wrists were curling up.  We even had them come in and measure her for splints...now that is gone!  Her PT says she doesn't need them!

 

she is sitting straight up with no head support and look at her hands!  She does have a head rest behind her head but she is straight and doing all the work. 

We finally changed her formula from Pedisure to Complete which is a lower calorie and a plant based formula  (it's first ingredient is peas....and I can read all the ingredients unlike Pedisure)  It took awhile because insurance had to approve the change.  She started it last week.  Her poop is more normal, she doesn't seem to be have all the gas and tummy cramps she had before that would shoot her heart rate up.  She is a chubby girl, but she doesn't look as chubby now, not that she has lost weight, but I think the pedisure was making her belly extended from gas.  So she feels better physically. 

Her heart rates are wonderful...under 100, mostly in the 60's and 70's!  That is a miracle.  We'd had a few times when her heart rates would be normal, but maybe for a few hours or a day...It's been more than a week now!  I can  remember days when she'd be at 160 all day...OMG!  

Yes she is still on Fish Oil.  This is day 201 on Fish Oil.  We didn't give it a couple of days when she was throwing up but for the most part she has gotten it 2x a day for 201 days now!  We still can smell fish oil LOL  She is our little mermaid:)

We finally got the order from the doctor for her to wear the "passy muir valve" while she is awake.  This cover on her trach allows for her to breath in her trach but forces the air up out of her mouth/nose to exhale.  She handles it great with no issues.  This moves air over her vocal cords and at some point she will probably start making noise again.  Remember in NY, they worked with her on it and she made some groaning noises.  They were light but there!  So now we are waiting for her to make some more noise!  Once she starts making it, she will continue.  At night she has to wear the regular valve right now and she can make a slight noise with it on and she makes that noise if she is wet.  She gets her feeds all night long, so she tends to get wet at night more often and she does NOT like it.  Her night nurses agree that she makes the noise when she is wet.  At first Jon and I thought there was no way she was communicating BUT she is!!!!   She was still in diapers when the accident happened and we were planning on working with her on that....

We are waiting for the insurance to ok her for speech therapy and then it is full steam ahead in working her off the trach altogether!  She is swallowing all the time now, just like you or I do.  She rarely drools, only when she is sleeping and that can happen to anyone LOL  she also keeps her tongue in her mouth!   That is a biggie!!!!

Once she is off the trach, we are starting HBOT Oxygen Therapy!

There are so many slight things that only we or our nurses would notice but she is looking at us more (she had a problem looking at people before, institutional autism)  she is relaxed, not jumpy, NO Valium for almost 2 weeks now!  Clondine (a BP med) used rarely ( most of the time she is too normal to meet any of the parameters)  More movement alof of it seems purposeful...   If she is placed on her side and doesn't want to be there, she tries her best to roll her self over.  She hasn't done it YET but it is coming!!!!

My heart is so thankful, we have no explanation for this huge improvement over the last week and a half (not even 2 weeks yet) but it is unreal.  We all just say THANK GOD!  Whether it is from her body/mind healing (since God made our bodies to repair itself) whether it is from the fish oil (that God made the fish) whether it is just prayer....  I do not know.  BUT I know how things have been these last 9 months, and there is a REAL change going on right now.  And however it has come....I thank GOD for it!

I'm pretty honest on here, I try not to make things better or worse than they are..."just the facts".  I've been sent different blogs/facebook pages of kids in situations like Selah, and knowing what I know, I can read between the lines.  The families alot of times try to make things more positive because they want to have hope, it is horrible not to have hope.  But it's even harder to have a false hope.   I've kept it real on here so if you see I share improvement, it is real and it is verified by her nurses and therapists.  There have been days, weeks, months of no real improvement, little things that maybe were not consistent....but this is consistent and continuous! 

When I look at Selah, I'm seeing "SELAH" now at times....there have been small periods when I could see her in her eyes (if that makes any sense) but I see her more and more now.  The way she looks at things, the way she looks at me and makes eye contact then looks away is just like she did BEFORE the accident and she is doing it more and more every single day.  

Again I don't know what to say...and we still have such a very long way to go but this is good!!!  I wanted to share all of it in detail with you all.  Thank you for every prayer that you have uttered on her behalf.  Please keep praying for our little girl.  If she'd been at this point, say a month after the accident, we'd have alot of medical hope that she'd fully recover, since we are 9 months from the accident, there still is little medical hope for Selah that she will go much further but God.....

More Improvments!

Today Selah started OT.  The OT therapist had not seen her since early Febuary.  It took awhile to get insurance clearance and for a space to open up in her schedule.  She remarked that Selah is much improved.  Her tone (tightness) is great and she is looking at things.  We can't really say she is tracking things with her vision yet but she feels that Selah is remarkabley improved!!!  Everything she discussed with us was very positive!  I LOVE hearing others say they see a difference!!!!  Please keep praying for Selah, we still have a long way to go!



Here are some pictures of my fav birds, SWAMP birds aka Sand Hill Cranes.  I stopped by where I walk to feed a homeless cat and these birds were right there, no fear of me.  I never found the cat, I think he was too smart, it was hot out there! 

 

 

 

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In my emails I got an email from one of my readers who wanted me to share her video on surviving

 mesothelioma cancer!  It is an inspriration video....    http://www.mesothelioma.com/heather/    Thanks for sharing Heather!!!!!!




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this was nap time a year ago....LOL

 

Looks like Selah threw out all her dolls and then decided to go and get them but fell asleep!

 

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Today is 9 months since the accident....there are still so many "if onlys...."  I'm thankful for her progress but I don't want this to be our story.  I want her up and running around, playing outside, getting messy, being loud....that's what I want...  I think she would probably prefer it too.

 

Please pray for Selah!