FOUR YEARS AGO! WOW!

I will ALWAYS REMEMBER gazing into the eyes of my son on a computer screen for the first time!

November 5, 2007 was a day that changed my life forever!  My dream of a baby for Bobby and I had a face, we had a son! That day began our lifetime with our amazing Panda Boy!  NOTHING else seemed to matter but doing all we could to get to the point we could hold him in our arms and bring him home!  I can't even begin to express in words the feelings that welled in my heart when I glanced at his face for the first time!  My heart lept into my throat and tears into my eyes and I could barely say a word to Bobby!  We had gotten an email the night before from the director of an agency in California we had never heard of stating that she had been told by a client of the agency that we were a family that felt called to adopt special needs children.  She said she had a baby boy that was "hard to place" among other things.  Would we consider looking at his file.  I knew in my heart of hearts at that moment that we had found our son.  I just KNEW.  Before a file and before a picture.  I just knew.  I screamed for Bobby and told him what the email said and he agreed.  Its our baby!  I wrote her back and said we want to adopt the baby.  She wrote back and said please look at this information about him before you make a decision.  We downloaded the information and read it as she asked but we KNEW he was ours.  We sent back word YES we want him.  All of this happend and we had yet to see a picture.  We just knew inside that this was our Noah WesLee!  A child to go with the name God had given us for our first son!  Then I spoke with the director on the phone about what all needed to happen for us to move forward and she told us!  And I asked for pictures!  LOL  We had made this decision and not even looked at pictures.  She was too funny because she did not even realize she had not sent the entire file with his pictures and all.  Amazing enough to us his file and been turned down so many times that she really was kinda doubtful we would truly say yes!  I wonder so much now how and why he was not adopted sooner but I believe with all my heart God choose him to be our son and to bless us with him specifically!  Anyway so early am on November 5 sitting at our old computer that took FOREVER to open the picture we FINALLY gazed into his sweet face!  I cry thinking about that time!  Happy tears now as then for the gift of life God trusted me with! That sweet amazing baby boy is now a sweet amazing active loving, funny, snuggly, compassionate 4 year old boy!  Noah blesses my heart each and every day!  After seeing his picture November 5, 2007;  we were able to travel to pick him up September 8, 2008.  At the age of 16 and half months.  Noah did not talk at all and now my sweet guy though still delayed in speech talks up a storm!  Some is still Noahese but most we are begining to understand! I still cry when I think how long I waited to hear Mama for the first time!  How I use to cry becase Noah could not tell me what he wanted or needed, what hurt etc.  Now he can chat with me and share his funny personality and things he thinks are so silly as he covers his mouth and giggles! :)  He is constantly telling us he is hungry!  Folks that dont know us must think we NEVER feed him.  But he is a robust 40 lbs now and wears a 4T (with some 3T stuff still).  He was globally delayed when we brought him home and he still is but not near as far.  He attends Physical therapy once a week, Occupational therapy twice a week, and one day a week an iterneret teacher, and an adaptive PE coach from the school comes to the house and twice a week a Speech Therapist comes to the house and once every 3 weeks a school OT comes. He has come soo far and is such a loving and fun little guy!  So many people in our life talk about how much joy they get from being around Noah.  He does still have alot of sensory needs we battle and stil at times has some major temper issues but boy has he come so far across the board.  I am so honored that God chose me to be Noah's mommy and to be blessed to watch him blossom into the amazing kid he is! :)  He loves anything with wheels!   Trains, cars, tractors, fire trucks, ambulances, you name it.  He love Mr. Potatoe head and will play and play with him.  He has a menagerie of stuffed animals that he totes back and forth from bed to the living room each day :)  They are his friends and loves and cares for them amazingliy!  They include but are not limited too, Buddy (his panda from build a bear right before we went to get Jeremiah), Elmo, George ( a stuffed gorilla that was Celeste's ), Raffi ( a stuffed Giraffe givin to him when Jeremiah was in PICU), and barney!  I need to try and get a really good picture of him with all of them lined up!  heehee  Those who remember the "table boy" pictures from when he first came home will enjoy that he still loves to climb under neath tables and things.  At Taiwan rocks he started a game of climbing under the table and tablecloth and eventually a bunch of the kids were doing it :)  In the store the other day a shelf in the shoe dept was empty, at least until we showed up , and he is up in the shelf!  I have to be so careful with him!  LOL  He will hide under blankets now too!  I have almost hurt the two us of twice recently.  Once I walked into the bedroom and a big comforter in on the floor and I am thinking WHAT is that doing here!  I almost stepped on it to rush and get what I needed and deal with picking it up later and my foot hits something hard!  YOU GUESSED IT, NOAH!  UNDER IT in the middle of the floor!  I freaked and explained how dangerous that was for someone not to know he is in there.  He just giggles.  sigh!  So the next day I come through the living room and his little fold out couch is upside down on the floor and I am thinking what is up with that.  All of a sudden it flies through the air and bops me and out pops Noah screaming PRIZE!!!! LOL (surprise was his meaning! )  He is also the most helpful child!  He will BEG to help me!  I love it :)  Some things he is ust not quite big enough to do and I have to get inventive so as not to hurt him by telling him he can/t.  Tonight he wanted to help with our supper.  We had a really junky meal but my mother was realy wanting me to make hot cheese dip so we got some taquitos to bake in the oven to eat with the cheese dip and chips.  Noah so wanted to help so we put the baking sheet on the island and set him up laying the taquitoes out on the baking pan to be ready to go in oven!  He was soo proud of himself! :)  He will bring me diapers and things when I am taking care of Jeremiah and is an amazing big brother!  I loves Jeremiah so and he cheers him on like you wouldnt believe!  He tries to help the therepist with him!  Its too cute! :)  He has gotten rather bossy at times and we are working on that.  He will fuss across a restraunt at someone tell them they forgot to pray before the meal!  sigh!  We are like SHHHH!  You are not the blessing police Noah!  We keep trying to explain that not everyoone does things the way we do, but he so thinks he has to tell them anyway.  sigh.  The nurse will get in my van and if she does not buckle immediately or forgets to and I put the van in gear he starts screaming WAIT ... BUCKLE BUCKLE BUCKLE!  When he first started doing it was the first day she rode with us and I did not realize she was not buckled and he kept saying dora (dont ask me why he called her dora cuz its not her name , LOL) anyway he kept saying dora buckle over and over and we were not understanding what he was saying and he was crying his eyes out before I finally figured it out.  He does at times try to yell at us with his little anger he gets going and we have to deal with that.  But that is so much better than it use to be and now I can usually get him to calm down and talk to me.  He is a very compassionate boy and when he has had a big fit or gotten in trouble after the fact he will come and hug you and say sorry all on his own.  It feels like way more than 4 years since that first glimpse of him , seems like he has always been a part of me.  I cannot imagine my life wihtout him!  It is so hard to explain to people how I could fall in love with hi from the second I laid eyes on his picture but I so did!  I dont' think it is something that people can understand if they have not lived it.  That bond was there immediatrly.  Well, I guess I have babbled on enough about my amazing Panda boy!  He is so cute, he will say Jeremiah frogie, me Panda!  LOL  He KNOWS that he is my panda boy! And he picks out panda stuff on tv, in stores, in toys r us catalog, on clothes, etc.  He loves them! :)  His little collection is growing! Thanks for reading this far if you did and now I leave you with some pictures :) 

I know its not even his entire face but he is just so beautiful :)

Noah holding a friends baby!  He is so loving and gentle and caring! 

my sweet playful boy!

lol, I looked up and there he was!  LOL

This was taken during Jeremiah's last PICU stay!  Aint he handsome! :)

Noah and Nanny (my mama)

hangin with the big boys in Mississippi!

Noah and his Aunt Liz!  She has won his heart! 

Singing and playing with Aunt Liz!

So excited to be going on an outing!

our family together at Kari Jobe Night of Worship waiting on it to start!  I ADORE his sweet smile in the picture! :)

Ready for Church last Sunday!  Jeremiah was smiling and Noah smiling and talking to him!

This is what I got when I asked him to PLEASE look at the camera and smile, since Jeremiah was actually smiling!  I so wanted one of both of them looking and smiling.  He was determined NOT to smile!  sigh Me and my big mouth!

Hallelujah Night!  My sweet frogie and Panda being Elmo and Cookie Monster for an evening :)

LOVE the smile :)

love this shot

Thanks to all our friends who have followed since we began our journey to Noah and to all those who have joined in along the journey of life with Noah! :)  Thanks for caring about our family!  We send you kisses in the wind!

Sharing....understanding??? and pictures

Understanding... I have come to realize that understanding is based on our own experience of things. I have been questioned and critiqued quite a bit as of late by quite a few people on decisions I have made for my children, especially Jeremiah. It has been said , "I DONT UNDERSTAND, why you do this or that or the other. I feel like it is hard to explain sometimes to people and I feel I guess that they can't understand because they are not in the same place we are in. I have been asked why do you not leave Jeremiah more, why do you feel like you have to be there all the time. I have been praying about a way to express some of what it is like. I am not really sure how to share it. I guess think about how special it is when your baby laughs for the first time, or takes the first step. They joy and elation you feel that first time is beyond amazing! But then your baby gets to the point they will laugh and laugh when you tickle them, and then those first tiny wobbly steps become walking all over the house and then running. You just dont have that same joy when you hear it or see it because it is now just something they do all the time. So imagine that your child did not laugh for an entire day, no matter how much you played with them, tickeled them, interacted with them, no matter if a room full of people are laughing at something funny, your child just is not going to laugh or interact at all with you that day, or imagine for a week, or sometimes longer they dont do that. Soo, then all of a sudden one day they bold face laugh at you, and interact, and make eye contact, but you were off doing something else and you missed it. That is a smal simbalance of kinda where I am. Jeremiah does not laugh every day, sometimes not even every week. He does not talk (except for a couple times when it sorta sounded like he said mama while crying), some days he does not seem to notice anyone else in the world exists. Soooo when he does laugh, smile, coo, interact at all it is all the more special and I would do anything on earth to not miss that rare special treat of connection with my son. I am sure this is not coming out correcly but I am trying to express just a bit of what I mean. So when I observe every second of my sons therapy session to learn as much as I can about him and be involved in all he is doing, or when I am not going out on a big shopping weekend trip, or joining in on the mom's gigglefest that is sans kids, please know that it is not that I am not wanting to spead that time with the sweet folks involved in those activities because I really would love to be included, but it is more about cherishing every second with my son, learning to be the BEST mom I can be for him. It is me dealing with the things the DR.s say to me in the hospital when they say they think the decline has begun, make your plans now, cherish each moment and have no regrets. As much as I want to believe they are wrong and it is not going to happen, the fleshly part of me at times feels the pain and fear, but then I pray, knock myself upside the head and determine to give him the best I can no matter if it is for a day, a month, a year, 10 years, or longer. I prayed for sooo long for both my boys, I begged God for help to bring them home, to trust me to be their mom, to allow me the one to receive the blessing and I wont to honor that trust God and the country of Taiwan had in me to give me such amazing gifts. So for those who dont understand the decisions I make I hope they will see that every decision we make is what we feel is in the best interest of our boys, that God gave to us to raise. Sometimes I am not ready to share the severity of things I am told by the doctors and it is hard to come out and ask for prayer because it hurts too much and because I dont want to speak all the negativity. I am not sure why I am writing or if this helps anyone to understand anything but there you have it. Now for a few pictures to share!! I will try to post a bit more often, I have been kinda overwhelmed with feelings and things lately.

my baby girl then!

my sweet baby girl!  :)  actin silly 

Noah in the van on our trip to Mississippi to take Nannie to her 50 year high school reunion! ;) and to see the family.

lovin the leg crossed like a big man! :)

My aunt came home with us for a visit! Her next in back of van.

Noah after an accident in van.  in his boots from his aunt liz!

tummy time

bearin weight no elbow after music time :)

noah playin while brother has his therapy turn

more playin

Noah helpin with Jeremiah's therapy

Noah and Aunt dorothy watchin movie :)

Jeremiah havin a blood draw at hospital with the BEST Phlebotomist on the planet!  His big sister!

a sweet treasure!  a SMILE :)  and a big one!

Noah playing!

love this :)

another happy face!  I sooo miss this during his times where he is not letting us in his world.

Adaptive PE teacher givin Jeremiah some weigh bearing time!  Look how big he is getting!

Noah watching MVP and in love with the monkey!  He watched the ENTIRE movie standing up! LOL  he loved it! Monkey is getting up there with Panda's and cars and trains! LOL

saying goodbye when time to take Aunt Dorothy to her ride home

Noah realy loves his Aunt Dorothy!

I took this from the passenger front seat while on our way to meet Aunt Dorothy's ride home.  I coul dnot see what was goin on back there but could hear her playing with them.  Picture came out great!  LOOK AT HIM, he is actually LOOKING at her!  Times like this really make me wonder how blind he is, he realy looks like he is looking at her!

my sweet Panda boy :)

workin on sitting!

all by himself for about 2 minutes! :)  He is getting better again!

Music time with Netta!

So thankful for our sweet Netta who helps us out now :)

Noah with his speech tearcher from school.  He looks unhappy but he really loves her.

Noah found an empty shelf in shoe department at a store!  He had to play with it! :)

Mamma and the Ethel High School graduating class of 1961!  My mamma is the one sorta in the middle with the blue floral jacket and white hair. 

Thanks for any who read all this and enjoyed the pictures!  thansk for prayers, frienship and caring.

I send you kisses in the wind!

You Will Be Ok!

Read this on a friend's note!  It was while we were in PICU after some pretty upsetting discussion with the doctors this weekend.  This doesnt exactly fit our situation but it is definitly fitting in alot of ways. If you are a mom to a special angel then you need to read this, if you are a friend to a mom of a special needs child you need to read this!

My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what he needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby in your arms and in an instant your heart filled. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand his strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet boy be far better than OK. You will show him boundless love. He will know that he is accepted and cherished and celebrated for every last morsel of who he is. He will know that his Mama’s there at every turn. He will believe in himself as you believe in him. He will astound you. Over and over and over again. He will teach you far more than you teach him. He will fly.

You will be OK.

And I will be here for you. Every step of the way.

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!