Not flesh of my flesh, nor bone of my bone; but, still miraculously, my own.
Never forget, for a single minute you didn't grow under my heart, but in it.

Monday, September 19, 2011

Breaking the Silence

Hi All,

It is time for me to break the silence.  I have not been updating the blog and not too much facebook on the whole old therapy/ new therapy issue because of several things and because someone tried to say I did not have a right to say things on my own blog or my own facebook.  Well, I have taken a step back, prayed alot, and thought alot and come up with some things.  The Constitution gives me the freedom to speak my mind and so with that in mind I realize that I do not have to remain silent and keep those who love our family and were praying when it all started and now about things and kinda got dumped on hearing what all ended up with it.  Soo, for anyone that still cares here it is.  For the purpose of this blog I pray to have bound in books when I can afford I will put it here whether or not anyone still cares.  But if nothing else I hope this will help others to know that NOOONE can tell you what you can and can't say on your own blog or fb.  Now here we go.

Some of you may remember that Jeremiah's speech and Occupational therapist at our former therpay place had basically given up on him and decided that one they had given all they had to give to him and two the speech therapist said to me "He is not ever going to eat by mouth and you just need to accept that".  Well, as a mom who loves her son I knew I couldnt just give up and not have speech and OT for him.  EVEN IF he didnt eat by mouth he still needed oral care and things and I just knew from reading and the Neuro telling me the more stimulation the better.  Hense the reason I began looking for another therapy place.  If you will remember we despretly did NOT want to give up our PT at the fist place because Jeremiah was very attached to her and responsive to her.  She agreed to still see him even though we were going somewhere else for ST and OT.  But she came up with the list of goals and consequences that I had questions about and kinda felt needed some rewording.  I tried to contact her about it to no avail.  Well, in sharing all about our life here on the blog and fb and asking for prayer that we would NOT loose our PT that we believed (and still do for that matter) was the best PT on the planet apparently some followers of the blog took it upon themselves to take offense at what they felt was mistreatment of Jeremiah by there therapy there and begain calling this PT (who also happend to be the team leader).  Now I was told it was ALOT of calls over and over again.  I find that interesting that so many were concerened for my son.  The problem was the PT was NOT happy about all this, felt like her reputation was being run into the ground and she claims that I was "bad mouthing her and very unhappy with her and didnt think she was a good therapist"  It makes no sense to me to this day if folks called because of concern for Jeremiah why they would lie and say that I said things I didnt so I am not sure where this stuff came from but I despretly wanted to keep her because she is the best PT and he connected so well to her and I was worried about possibly loosing her.  I told her why would I be fighting to KEEP YOU if I did not like you.  ugggh made no since to me.  There are alot more details to it all and alot of painful things and I can't tell you how many tears i have cried over this all.  She did drop Jeremiah stating that if I did not like something she did with him she could not risk I would say on my blog that I disagreed with her.  Well, first off if you are that unsure about if you are doing the right thing that someone disagreeing publically has a problem scares you then you have a problem.  I find it hard to believe that in all the years she has been a PT that a parent has never had a problem with her.  It is going ot happen.  funny thing is I LOVED HER and did NOT want to loose and did NOT say she was a bad therapist and did NOT threaten her reputation.  BUT even if I had by law freedom of speech says I have the right too.  And she had NO LEGAL RIGHT to discharge Jeremiah even if I did do it.  BUT what good does that do me?  YES legally she was wrong, YES I could sue BUT would I really want her working with Jeremiah if she is angry and doesnt want to.  The sad thing is that we supposedly had a very open relationship so it upsets me that she would do the things she did.  And that she would discharge him illegally and for an untrue reason.  She herself NEVER read my blog, never saw any fb posts , but supposedly all these people were calling her.  Anyway, that is the jist of what happend with the PT.  I never said her name anywhere but apprently some figured it out and apparently other therapist in town who followed my blog (??:???) were calling. 

Now she tried to say I could not talk about what happend, that I had no right to blog about her, but mind you she did not mind me blogging about her when I posted pics of her working with Jeremiah previously that she knew about, she did not mind me asking for folks to donate money so she could have Jeremiah in her hippotherapy program to get publicity for it and get an extra student.  To me its funny that its ok in one way and not another.  BUT the fact still remains I thought adn still do think she is the BEST Physical therapist in town so my son was penalized for something that one ) was not true and two) was not legal grounds .

Anyway all of that aside.  on to Jeremiah, the only imporatant thing in all of this.  We are blessed enough that the place we moved for ST and OT had a PT and that God moved mountains for both boys to see her and also both boys to get OT and Jeremiah ST.  Such a blessing.  In the area of OT both boys have soared and thrived beyond imagination :)  I did not even realize some things that Noah had need of and is already improving in.   In the area of speech / feeding Jeremiah is doing AMAZING!  The child who " is never going to eat by mouth again" Is umm eating by mouth.  He is eating about 4 jars of baby food a day in the infant feeder now AND he is eating by spoon at least once a day sometimes more.  He is receiving oral stimulation and oral care at therapy and I and our new part time therapy nurse are receiving insruction on how to do these things with him at home.  He has 2 different speech therapist on 2 different days and both are very skilled and help in ways never even tried before.  I can't be more pleased and amazed by his progress and the care he receives!   Jeremiah's new PT is very sweet though not as experienced as his former PT but she truly cares and works so hard with him.  Jeremiah has regressed and I am very concerned.  I can't say for sure if the regression is because of loosing his PT he had such a connection to especailly during his surgery recoup time  or if it is an emotional thing because his PT is not around anymore, or if it is because of a problem from the surgery.  I can't really say why but I can just say that he has.  He is not sitting at all, he will not roll at all anymore though today he did at least particiapte and we worked with him on roling.  Please be in prayer that he will gain back what he has lost and progress further.  Also, this therapy place does not have a gait trainer for him to use so we need prayer that one can be donated to them.  Also I am praying for one at home.  he was taking a few tiny steps in the gait trainer before surgery so I pray that we can get him in one again as soon as we can.  He has a stander at home that was ordered by old PT but that is not workable for him and cuausing marks on him and severe pain.  Please pray we can figure out how to transport it to the new PT to see if she can figure out a way to modify it to work or then if she can get the place it came from to exchange it for one that will work.  Anyway overall both boys are getting way more therapy and in some areas way better therapy than they were getting before.  It was a very good move for them and the place we are going has been amazing and so blesses us from the owner, to the therapist, to the receptionist, and even other parents.  I know God led us here and I am very thankful.  I will say it is still emotionally upsetting to me the loss of our former therapy but we must go on. 

I also wanted to share that today was a HUGE step for me emotionally with Jeremiah.  Some of you know about this and some of you do NOT agree with what we have done and it hurts my heart for people to think bad of me so I am trying to deal with that.  But today was the first day for our part time therapy/activity nurse.  She will work about 25 hours a week.  She will attend one day a week at our new therapy place, one day a week when school homebound therepy comes she will be here for that, one day she will help me take the boys on outings and fun places and all, and one day a week she will help with going ot park or playing in the afternoon at home and then go with us to Church to help Jeremiah partciapte in the children's class for him.  I know some of you feel like I should not have a nurse to help and I fought it myself for a long time.  The main reason I agreed to it was they finally convinced me of a couple things.  I can use the help lifting the wheelchair in and out at therapy and outings and such, it would be an extra person specifically trained to do Jeremiah's daily stretching ( the more often a day it is done the better for his tight tigh tight muscles and less risk of any further contracture) and to practice therapy skills, and someone to help with his laundry, and changing his bed.  I had been so worried and still am a little bit that he will decide that she is mom so I am being very careful with the things I alow her to do.  She can help with feeding with a spoon for instance but not with infant feeder as that is more bonding.  And all there time is spent with us all in the family area.  My prayer is this will allow more fun for both the boys because it is kinda hard on some kinds of outings with Jeremiah in the wheel chair and Noah able to go in areas the wheel chair can not.   Our nurse was here today for 7 hours and went to thereapy with us, did feeding practice with Jeremiah and was very sweet to us all.  Noah has decided she is HIS new friend! LOL  and she was so sweet to him about it.  He woke up from his nap and she was gone and he was mad! LOL  He was prefering to hold her hand all day. sigh  lol so she walked and held Noah's hand and I pushed Jeremiah in his chair.  Anyway, please be in prayer for us as we all get to know each other and figure out how this will all work.  She is very talkative so it is interesting having another adult chatting away during the day. LOL  That may put me in sensory overload! LOL  It is kinda interesting because of the privacy feeling kinda invaded but so far it was good.  The fact that most days we will be gone from the house some of the day or have therapy in the house part of the day it wont feel so long her here.  Anyway whether you agree with our decision or not I do ask you pray for us as we go about this.  It is so funny how many opionions I get.  As soon as I mentioned awhile back that between our two insurances we could get nursing with no out of pocket I have have 2 extremes of opinions!  Either people think I am awful to consider it (most vocal)  or they think I should take all 56 hours we are approved for and am silly for not wanting help.  The nurse told me that I am strange and most families want the nurse to do total care and have them in the child's room all the time.  She has NEVER worked with a family where she and the child are in the family area which is how it is here.  I found that quite strange. 

I have been working on some collages of pictures and not gotten them done so I will just go ahead and put some of what I have up.  I hope this post made sense.  I did not get much sleep last night so I am not thinking  to clearly but I just felt it was time to break the silence and answer those who have been asking. 
Waiting room at therapy!

Jeremiah riding Rody with school therapist.  He loved this toy they brought!

Noah and one of his therapist

Noah workin hard

Jeremiah workin with OT

Noah workin with his OT's student

Swing time!  SOO need a swing at home!

love this one :)  He was not happy at her stretching his hands and was talkin to her!

stimulating and waking up his face and mouth!  he was no thrilled! LOL

workin a puzzle on school in home teacher ipad!

Table decoration for Noah's Gotcha Day Supper

Me and Panda Boy on his 3rd Gotcah Day.  We had been playing crazy!

We send you all kisses in the wind!
THE WAIT FOR NOAH IS OVER!!!! November 3, 2007~September 8, 2008 First heard about Noah~Noah in our Arms!
April 1, 2009~ June 7, 2010 First committed to Jeremiah~Jeremiah in our Arms!

The FIRST Picture we EVER saw!

The FIRST Picture we EVER saw!
Noah WesLee 5 months old

The First Picture we ever saw of:

The First Picture  we ever saw of:
Jeremiah Harold Sisemore ~1 year

Kisses in the Wind

I hold you in my heart and touch you in my dreams.
You are here each day with me, at least that's how it seems.

I know you wonder where we are... what's taking us so long.
But remember child, I love you so and God will keep you strong.

Now go outside and feel the breeze and let it touch your skin...Because tonight, just as always, I blow you kisses in the wind.

May God hold you in His hand until I can be with you.
I promise you, my darling, I'm doing all that I can do.

Very soon, you'll have a family for real, not just pretend.But for tonight, just as always, I blow you kisses in the wind.

May God wrap you in His arms and hold you very tight.
And let the angels bring the kisses that I sent to you each night.

When Love Takes You In!