Tuesday, October 30, 2012

Realistic!

We all have dreams for our children!Dreams that they do great things in life and become a good person,caring and kind and respectful.With a child with Cerebral palsy and many other medical issue's you dream for that child to roll,crawl.,walk ,and talk!I was told by a doctor that spent less then 5 minutes with him that this was not realistic.How in the world would he know?I will not let some doctor that don't really know my child tell me this junk.For one..Jaxson is learning to army man crawl...This is BIG for our sweet boy.Jaxson is finding ways to communicate his wants and needs ..this is also BIG for him. I am not sure Jaxson will ever walk or talk but a Mom has the right to dream and shoot for the stars for her Child and that is just what i am going to do!Jaxson is perfect just the way he is!Everytime he learns a new skill is a BIG milestone and i  make a huge deal of it with lots of praise,Hugs and kisses.
     Jaxson is amazing and we love him so much!Dont tell me we are being unrealistic.Unless  the person knows my son personally they will never get it.Jaxson is teaching me along this journey and i am so blessed to learn from Him.
 

Sunday, October 28, 2012

Surgery Scheduled!

Jaxson will have surgery to get his baclofen pump in on November 15th.I am excited as this will help him so much but scared  too.I dont like him being put to sleep but i know he is great hands.Childrens mercy Hospital is the best place for Jax to be and the best place to get this done!He will have to stay in the hospital a few days and i will stay with him while my husband holds down things at home!Once Jaxson heals from this he will be a new kid not all stiff all the time!I want what is best for him and this should help him be pain free.

Saturday, October 27, 2012

Beds!

Jaxson is outgrowing his crib and it is time to think about a bigger bed!This bed would work perfect the problem is the PRICE.This bed is 7,000.So my husband is going to make a bed similar to this.The only difference will be the mattress will not rise up which is fine.I would like storage drawers added under the bed  so i can keep his bed pads and extra sheets in it.I am hoping soon to get this bed made.Jaxson is growing like a weed and this is something we cannot wait much longer on!

Thursday, October 25, 2012

My Sweet Pumpkins!

We went to a pumpkin patch called Red Barn Farm !They have posted they are handicap accessible !They are not and it was very difficult to get the wheelchairs around.We decided we will not return to this patch.I promised both Boys a fun filled day!It was not fun for them at all.You had to walk a half mile down a gravel road to ride the hay ride.That is impossible with the wheel chairs.The same for the pony ride it was on top a hill with gravel.So the Boys set in their chairs until we paid for the VERY EXPENSIVE pumpkins (70.00 for 3 pumpkins) and we left.I was angry at the price we paid for those pumpkins.I have scoped out pumpkin patches for next year that are more handicap friendly.We found one and its not far of a drive.That is the one we will go to next year!I still managed to get this pic a a couple others.My handsome boys that i treasure so much!

Wednesday, October 17, 2012

It is getting cold and coats!

Coats do not work with Jaxson's wheel chair!We have tried and most times we put it on back words.The problem we have is when he is in his wheelchair his chest harness will not fit over the coat.I have been searching all over for someone who makes Ponchos.I found her and she asked me what kind of material.I told her Jungle animals and this is what she made!I love it!Jaxson will be nice and warm and COMFORTABLE!It ships tomorrow.coat problem solved for my hightone little dude!

YES!We are Alive!

We have been keeping plenty busy around here with foster classes which we are now half way through.Preparing our home for a child and running a certain little boy back and forth for appointments.I will be so happy when all his new seating stuff for his wheel chair comes in.He can set in it just not as comfortable as i would like to see him be.
    Next week is going to be a busy one.Jaxson will see the nuerosurgeon to set up his surgery for his baclofen pump.I am excited as this will help Jaxson but scared for him.Recovery time is longer then i anticiapted.We still have no nurse so Jax pretty well keeps me busy with schooling...therapies and play time.I love it though and would not have it any other way.
     Landen is getting so big!As he grows so does his seizures which are nasty scary lasting 20 minutes.He sees nuerologist Monday and i am asking for emergency diastat!Rebecca is doing good ..doing all those teenage things!Love my kids  i am blessed!

Friday, October 12, 2012

To Cute for words!He is trying out his new stroller!The wheelchair was fitted and he is getting a higher back on the seat and a new head piece a new cushioned peice for his feet and a wedge like thing between his little legs.It will take a few months to get these things for  his chair.So we will use the stroller as much as we can as he dont fir right in the wheelchair!Things are going good.Jaxson has his nuerosurgeon appointment next week.This is the appontment to meet the surgeon who will be putting his pump in his tummy.Therepy is going great.He shocked us yesterday as he did an army crawl.Not a big distance but a couple inches.I am proud of him and hope to see more gains in that area!

Tuesday, October 2, 2012

Strollers!

Jaxson has grown so much he does not fir alot of strollers!With his wheelchair not fitting right we rely on a stroller when we go out!.Jaxson has a Jeep stroller..It has worked great  for him.Its old though and has seen better days so he needed a new one.My husband wanted to get another jeep stroller but i wanted one with a higher weight capacity that can be used for a longer time.So i asked on a cp group.She told me of a stroller that weight max is 70 lbs.That is perfect and we will get way more use out of it with that kind of weight capacity.It also has a high seat so easier to get him in and out of and more leg room for my tall guy!The price of this stoller on Ebay is 200.00 and amazon had it for 180.00!She also tole me where to buy it at the best price.Albee baby had it for 99.99 and shipping was free!I am tickled to get this stroller for my Jaxson.Hubby has one issue with it..Small basket will be hard with all his equipment we have to carry.The handles can hold some of it so it will all work out great.I even got the stroller in Jaxson favorite color...ORANGE!

Monday, October 1, 2012

To good to Last!

Jaxson's nurse that is.She worked 1 week and ended up in the hospital and is now on medical leave.The agency called us and said she is probably not coming back.I am sad...We really loved her and she was so great with Jaxson!We have not had a nurse now for 3 weeks!Because Jaxson is on a pretty tight schedule...with daily things and school and therapy and out of home therapy and so on.I had to give up my job.My husband does not give him meds as he is afraid of messing them up and he gets messed up with his very busy schedule throughout his day.I drive Michael and Jaxson and Landen to appointments and my schedule was becomming more stressful by the minute.I loved my job...It was hard to let go but i have to do what is best for my family.Right now we are praying we get a GREAT nurse soon!

Little Lovey!

My little guy in his wheelchair..He has outgrown the seats so tomorrow we go to seating and mobility clinic to order new seats for his wheelchair!