busy couple days!

Yesterday Jaxson had a rehab appointment to get his pump emptied and refilled!We are seeing great results with the pump !Jaxson is much happier as he is not so tight and in pain.I did ask the rehab Doctor when we can see orthopedics!She said it has to be 6 months after he had the pump surgery so we are looking at June!I am ready for this appointment as he will hopefully get the much needed surgery to get his hip and ankle repaired..Both have been dislocated for many years and cause him pain.The needle to empty and refill the pump was very painful for Jaxson even though he had lanacane on the site an hour before my poor guy.So after we left the rehab office we went to the gift shop and he got a wonderful texture book and 2 more pairs of socks.Then we went to walmart to get groceries and he got Perry the Platipus slippers and a yo gaba gaba movie.Yes he is spoiled but oh he is ever so easy to spoil!
  I have also been looking for a bed for him...He needs a bed that is higher up so it is easier to get in and out !He also needs one that has rails.The bed we wanted to get him was a sleep safe bed but they are 8,000 dollars.So a man had listed a bed on a local sell site.I contacted him and he was ever so nice.He told me he had bought  a hospital bed for his mother and the mattress is brand new.His mom told him when she passed to please give it away to somone that could use it.I will be picking this hospital bed up soon for Jaxson.
  We are waiting on a bad storm to come in bringing with it 10 to 12 inches of snow and sleet mixed in,I am worried about losing power and not being able to charge Jaxson's suction machine or his feed pump.or his sat moniter and night moisture machine.So my husband and i went and bought a generator to hook up these things if need be.We are ready to the best we can and will be home for quite a few days now!

You know your child loves his nurse when!

She comes in the house in the morning and mommy is dressing him and he starts stiffening and not cooperating at the same time smiling at her.When she takes over dressing him and he is smiling at her and relaxing to get dressed!When he lays kisses on her allday...when he is just happy..Thats when you know you have a WONDERFUL nurse to take great care of your precious child!I am so happy he has her  and she is very good with him .I am happy i have no trust issues and all is great!Jaxson is my world and i am glad he has beomce the nurses too.

EQUIPMENT!

When you have a child with special needs there is an expense of equipment.Sometimes insurance will pay for the things you need.Bath chairs for a child is NOT one of them.Now if Jaxson was an adult it would be paid for.I am positive the reasoning behind this is because..as an adult you only need one.A child grows and goes through many of them.Jaxson has a rifton blue wave bath chair.Its bulky and heavy but it has worked and i only gave 20.00 for it at a medical equipment store that takes used equipment.It has served its purpose and now Jaxson has outgrown it.These bath chairs are not CHEAP!They are 100's of dollars!

       Positioning chairs is another!Insurance eyes the wheelchair is all a child needs.When at home i like to set Jaxson is a positioning chair to play or watch his favorite cartoons.The wheel chair is nice if i had the home to get it around in.Jaxson also needs a Hoiyer lift in the near future.The rehab department is working hard to get the lift paid for.Jaxson is almost 44 lbs and growing.My back will thank me if we get this lift!

   So i am saving to buy a bath chair and a positioning chair.His positioning chair he has now he is outgrowing at rapid speed!

   I am going to open an account and every month put so much money in it for Jaxsons supply and equipment needs!This will help all of us in the long run!That way if Jaxson needs something i will be able to meet his need!My boy is worth any and all expense..I would not trade a thing about my child.He is amazing ,strong little fighter who has been through so much in his 8 yrs of life and has a smile on his face all the time he is my Hero!

Birthday Boy!

My little Man turned 8 yrs old yesterday!How time flys and my boy is growing!

Stuff!

Jaxson had a rehab appointment this past week!His baclofen was increased and we are seeing results.Yesterday he discovered his hands and would watch them and was so amazed by them.While at the rehab appointment we asked if we can get a bath chair and a hoyer lift.He is almost 44 lbs and is getting hard for me and husband to lift.It takes months to get these items so we got them ordered now.He has a bath chair that we paid for but he is outgrowing it quickly!
   I have been mad at the school....Landen is autistic..change or break in a structured routine is bad on him the school has Broke all of it  resulting in melt downs and hitting from Landen.I have told them repeatedly when he throws himself down do not touch him..he is Autistic and touch is hard for him.I have told them to use a stern voice and tell him get up now or go to time out..It works and there would be no hitting from him if they would LISTEN.Another problem he is having...Para changing..he has had i don't know how many Paras...this confuses him he is better with the same para everyday all day all through school.I got a nasty note today saying they tried to call me repeatedly...I don't know what phone number they were calling as i was home allday and my cell rang once and it was my sister and my house phone rang alot and NONE of them was the school.Monday i will be calling an IEP!It is chaos at school to Landen and now i see why we are having a hard time getting him on the bus in the mornings!

We found the HOUSE!

We found the most perfect house to fit our needs....Easy access to get Jaxson in the home. all one level ranch home.a beautiful deck and private drive,2 car garage and a basement...5 bedrooms and 3 living rooms....One of the living rooms will be Jaxson and Landens therapy room.I love this house...Now to see if we can afford it.Its a bit out of our price range so we have to see if we make an offer if the owners will come down on it.Its a house with alot and this is what we so need...Pray for us...I will be heartbroken if we cannot buy this home!

2 1/2 yrs so many changes!

 When Jaxson Emmanuel came home to us he was fitting 12 month clothes!So tiny that he fit in an infant carrier!He was very sick with alot of health issues.

Now Jaxson wears a size 5 boys shirt and 5T pants..he is a whopping 43 lbs!He is healthy and strong and getting stronger everyday!H e is so amazing.I thank God everyday for my sweet,Beautiful Liberian Angel!