screening!

Yesterday Jaxson had his Baclofen screening.It is a test they do by putting baclofen(muscle relaxer) directly in spine by lumbar puncture.It goes to the brarn and works on his hightone .The whole idea of this test is to see if he would be a candidate for a baclofen pump to be placed.The pump distributes the medicine better then giving it orally.It also takes less medication in the pump.Jaxson did wonderful during this test .I have never seen his legs so relaxed ever!We are now awaiting for an appointment with the nuerosurgeon so he can proceed with the surgery to get the pump in place.I am happy for Jaxson!He wont be in near the pain he is now with his tight muscles.Our goal is for him to be able to use his hands and arms as well as get loose enough to have surgery to fix his dislocated ankle.The orthopedic doctor will not fix Jaxsons ankle or hip until we get the tone under control.Praying this all happens quickly.would love to see my angel be more comfortable in time for Christmas.That would be the best gift of all!

Zoo Trip!

Growing Boy!

My little one is growing into such a big Boy!He is absolutely positively ADORABLE!

New Nurse!

Jaxson got a new nurse on Monday!We interviewed her on Sunday!She is AWESOME!She does an amazing job with Jaxson.She does school and therapy and massages.She works with him everyday!He smiles at her alot so that tells me he really likes her.He even snuggled into her when she was holding him.She cleans machines too without being told like we did the first nurse.She does a great job.I am very pleased with her and already see a big difference in my son.
   The  School OT talked to me and wants us to send Jaxson to school.I have alot of decisions to make.Right now with Jaxsons Immune system compromised i dont want him in school and i told her this.I told her maybe next fall we will see.I know he will get alot more out of school if i send him but i worry so much and feel better if he is home with us safe from GERMS!Decisions are hard and i want what is best for Jaxson.We will really have to think long and hard about this one!

Nursing! Its not all its cracked up to be

We have had nursing for Jaxson for a few months now!What was suppose to help Michael and I care for our child and give us a little less stress ended up doing the opposite. Jaxson gets 56 hrs a week of nursing!So he had a day shift nurse Monday thru Friday 8 a.m. to 4p.m and a night nurse Tuesday and Thursday night 11 p.m to 7 a.m.Our night nurse was great never had any problems and she adored Jaxson.I would give her a list of stuff to do and she always got it done.She turned Jax every 2 hrs and loved on  him before he went to sleep!We lost her because she got ill and her health deteriorated quickly.
     Our day nurse is a whole complete story.We hired her because she has been with nursing agency for 12 yrs taking care of trached kiddos.She was really nice and easy to talk to.After a couple of months working things started going bad!She was late everyday never on time.We had to tell her repeatedly to suction Jax or hook him up to eat.She was messy leaving diapers and gloves all over .Would not do things i asked and was getting a bit bossy with me about Landen(which is none of her concern).She has bad knees and was not able to get down on the floor with Jaxson.She would change Jaxsons diapers in the recliner and get pooh everywhere and would not clean it up.We had talked to her about alot of this!Some got better some got worse.She was getting in my business a little to much.The topper  was..wednsday she went to put him in his chair and hurt him..Not on purpose but accidental.Now usually you would pick him up say i am sorry calm him and kiss him.That is not what she did..she made him cry and said..Oh your alright and walked off.This is un acceptable to me.He is my child and he did not desereve that.My husband informed me this was not the first time this had happened (she did it once before when he was here with her) and she said the same thing If i would have known this she would of been gone then.Jaxson has to trust the person who is caring for him.With her doing that there was no way he would trust her or start to become scared of her I was not waiting around for that to happen..I was so upset as i heard him cry and heard and seen what she did.I called the agency and had to let her go.I will not let no one hurt my child..accident or not she did not comfort him when he needed it most.So now we have no nurses at all.I am not wanting to do nursing now !My husband said he wants to try again and we will be a bit more picky about who we hire.I talked to many moms that deal with the same issue and they said you go through several before you find one that works out great.I don't know that i want to wait or go through several for the perfect nurse but i understand we need the help for Jaxson.I will also be investing in a nanny cam!I will feel safer if i know what the nurse is doing with my child.I am still upset about it all.For now My husband and I will do all his care and I am not complaining!I am going to enjoy every bit of it!

Better!

I am better about the school thing!I am working on a daily schedule for the nurse to follow(yeah right) until i am able to be home allday!I did some tonight  with him.He dont grasp it but i know he will takes him a bit longer but he will catch on soon i am sure!He cracked me up tonight!I put his passy mur on and i was singing Twinkle Twinkle little star to him and he started making a loud noise and he was trying hard to sing with me.It was so sweet I sure love this boy!Jaxson loves to be read to so i read him a book!He was full of smiles when i was doing his stretches tonight.As hard as he works he always smiles.No matter what he always has an award winning smile for me.

School!

I am very displeased with the school...Jaxson gets 90 minutes a month of OT from the school with ST and PT as a set in.They do nothing when here.They come for a half an hour and complain about the way his arm/wrist splints fit. They complain about his appointments at childrens hospital.He is not their child he is mine and i am doing everything possible to help my son be comfortable and have more of a life.They give us nothing to work with or help Jaxson progress.I am so upset!We have went out and got Therapy out of school which we will lose because they are going to Bill Insurance and Insurance will not pay for Both.
   I set tonight and made up a list of things that we will work on with Jax!It will be things he likes and things that need done..brushing teeth,washing face and so on.I will have an item he can choose..Old tooth brush,wash cloth,lotion bottle.Then he will have play time..I have not decided what to do for this yet.He will also get to chose between music and cartoons on some of his free time.I will also have Nap time and eating in there as well as bath,story time,and much more.This way jaxson can learn to communicate the things he wants and needs.Kind of like a switch board.
   I have decided i am going to give my job up so that i can dedicate all my time on my son.He will not get what he needs from the school so this mommy is going to do her best to teach her child.I am angry at the school!My child has so much he can learn if given the right chance.He will not get this through this school.
   I will not let my child be left behind...I am also in search of a play group He can attend for social skills.
Jaxson has come so far and will go farther.
   Tomorrow i am stopping at walmart to pick up some things to help with this.I am excited about all this.Jaxson needs a better routine anyway and this will be more structured for him.This mommy is learning as i go.

Its that time of year!

Its that time of year where if you have a cold i will ask you not to come to my house!Where i beef up cleaning with Lysol.When we are out in public dont be offended if i ask you to please wash your hands before touching this little one.I have to keep this lovie from germs as much as humanly possible.Please dont think i am rude..I am not! just have to protect my fragile son.A cold for him can become very dangerous!I want him to say Happy and healthy!

Living with an autistic child!

Some days i crack up at his antics..Oh this little man is so sweet and funny!Then there are days where you are just trying to figure out what is going on inside that brain.The days where he throws food...or throws toys..Or has no impulse control and gets himself in trouble.Or this child who thrives on structure...If you break it Oh my watch out it will become a long day!I watch my child grow and thrive in a world of his own.Glimmers of my guy come out and how its awesome to see.I am blessed to be this lovies Mommy.Landen stole my heart 8 yrs ago and has had me by my heart strings since.I love you Landen LeRoy  you are my sweet Prince.I am so so Happy to be your Mom.