DME

I have such a bad time every month with the DME and getting Jaxson's medical supplies!Every month i have to call them because they forgot something(even after i go through the order with them) or sent the wrong stuff.I am tired of the battle we have with them every month.I asked for different trach ties as Jaxson is allergic to the ones they give him his neck is a mess.They sent a different brand but made of the VERY same materials they are identical to the ones that break hi neck out.I have no choice but to use them until we get something different.My poor babies neck looks awful.I called them back this morning and this time i talked with a supervisor.I told him my complaints and how i am tired of fighting for what Jaxson needs to meet his care needs.He is sending different trach ties..the water bottles for his HME machine(lots of problems getting the water bottles that they are suppose to give 2 of every month) and Yonkers that we have fought to get.I ask for a Yonker and they send me suction catheters UGHH!I hope one of these days to not have to deal with this.
I have called our insurance to see if we can switch DME's I am still waiting for the call back!

HOMEBOUND SCHOOLING!

This is what Jax will be doing in the fall.I had a meeting with special education yesterday and told them i wanted home bound school for him.They agreed with me that it is in the best interest for Jaxson.I was so thrilled as i thought i had a fight on my hands.Jax can get one germ and be in bad shape.With a school setting that puts him at a high risk.Also Jax is very delayed functioning at 3 months old and what can school teach him ?We work with him here and My husband and i feel we are the best teachers for him at this point.
May 27Th Jax and i will go over to the school and he will be assessed so we can see how much therapy he will get.I am pretty sure it will be maximum allowed.I am so happy at how the meeting went.They said i was very Knowledgeable(I should be i do his care and talk to all these doctors).This also saves me stress as they would have had to hire a nurse and i am not fond of strangers taking care of my sweet boy!No more worries now i feel better and am happy that school is all worked out now for our Kindergartner.

JAXSON'S APPOINTMENTS!

Last week was busy with appointments for Jax!He got his cast off and we went from there to Hanger to pick up his new AFO!We had to call hanger back because he has a very Prominent ankle bone and there is not enough padding and we are seeing pressure spots.He cries after 30 minutes of the brace on.I tried to pad it myself until we can get back to CMH with the AFO and he still cries and still has a red mark on his ankle bone.For now i am doing allot more stretching then usual to keep the foot from reverting back until we get his AFO fixed.
Friday he had his MRI!It went well but for some reason it was messed up in their computer system that he was to stay overnight for observation.I and the doctors were dumbfounded trying to figure out why whats the purpose.He was not on oxygen his Sat's were great and no fever so really no reason to keep him.The doctor let us go home as he said he is not sick but being in hospital gives him a higher chance of getting sick.So 2 hrs in a hospital room and we were released.
I ordered trach supplies today and requested different trach ties.The ones he has is tearing his skin up.We can get new ones but have to talk to the DME'S R/T.The rt has not called yet so i bet they send the marpac ones anyway which i will call them again.I am positive he is allergic to the material they are made from.I have some others we been using and i love them and would love to get them instead.His neck is not all sore and icky with them.

HAPPY EASTER!

Happy Easter !

SAME OLD STUFF!

Not much happening around here.The weekend was quiet we did not go anywhere just stayed home.Rebecca shocked me by cutting her hair into a bob.It looks adorable on her so i am glad she did.Linda went to my cousins for the weekend and my cousin bought her a pretty dress for graduation.This is going to be a busy week.Rebecca has a dentist appointment tomorrow.Landen has a doctor appointment tomorrow and Jaxson has children mercy appointments.I am looking forward to Easter.This week has been chilly so not much outside time.We are also getting rain this week .On the bright side Easter day is looking good.Hope everyone is doing well.

NO MORE BOTOX AND MORE

Michael and I decided Jax will not get anymore botox shots.They are just not working.He had them 1 month ago and the effect is gone.It was gone 2 weeks after the shots and these are suppose to last up to 3 to 6 months.He is still really stiff and i cant see putting him through all that pain if there is not a noticeable difference.We will see doctor roge in the the next month or 2 and let her know we will not proceed with a 3rd round of these very painful shots for Jax. We are hoping the baclofen pump is our next step with our boy!Today he got fitted for his new AFO and he got his cast taken off and replaced.Next Thursday he gets the cast off and his new AFO in its place.Jax will be happy when he can take a tub bath again.He really needs to see the orthopedic doctor.His hip is getting increasingly worse and PT suggest he be seen.I hope this appointment comes soon.

NO MORE ENDOCRINE!

Yesterday Jax had an endocrine appointment and i was not sure why.He had been cleared a year ago when his Thyroid levels were just fine.So we went to the appointment and the doctor told us we don't have to come back.She did take a blood draw just to be safe but we are done with going there.I am happy about this and that Jax does not have another medical issue to add and worry about.No appointments today and we are loving it!

JOB OLYMPICS!

Good Job ACCHS!I am very proud of you all!

Linda had job Olympics yesterday at Johnson county community collage.Linda placed first in check writing and second in sorting mail and job interview and job application.Linda's class placed first place in the small division over all.Linda did so well she had a job offer but she is to far away to take it.I am proud of her.

OUTSIDE!

Jax loves to be outside and yesterday was warm enough he had shorts on.He was so relaxed and content being on my lap or in his activity chair.

Casting is working!

Tuesday Jax got a new cast his ankle and foot look so good that next tuesday they are casting to build his brace.I am so excited this worked and has saved him from having tendon surgery for now.They will cast one more time just to keep it from reverting back until he gets his new braces.I am excited as this means he can finally wear a pair of SHOES!All i can get on him is slippers.He has a couple pairs of shoes that fit but his ankle had worsend and it was impossible to get shoes on his feet. Today he has a endocrine appointment and i hope to get a good report on him today.He will be having a physical and medical history soon as he is scheduled for an MRI on april 22nd.I am anxious to get this done to see whats going on in his little brain.The nuero has some concerns as his cat scan shows the outside of his brain is smooth .This should give me answers i have been waiting for. Lately Jax has been trying hard to grab his toys.his muscles wont cooperate but he tries and knocks them over.Its so cute seeing him trying to interact with toys more then he has ever done.He is such a sweety and so fun to parent.

WEEKEND!

The weekend was beautiful and warm!70s on Saturday and 80's on Sunday.We took the boys out on the back deck to let them enjoy the weather .Jaxson enjoyed it very much!Landen is my outdoor boy and would be out everyday all day long if i let him.We cleaned the deck off and did a little bit of yard work.We have so much yard stuff that needs to be done.Hoping this weekend to get more of it accomplished.The deck now looks great all cleaned and swept off.I need to scrub the siding on my house that's one of the to do's we need to get done.

MY LITTLE COWBOY!

Schooling!

Michael and I took Jaxson over to the school for kindergarten round up today!I have been trying to get school lined up for him sense August and no one wanted to deal with it.Now that he is basically enrolled they HAVE to deal with it.The school physcologist called today to hold a meeting regarding Jaxson.I am pushing for home bound schooling for him. If we don't get it the school will have to hire a nurse the KNOWS trach care.I worry about this and prefer to home school him but call it home bound.Their is a difference and home bound brings full services he would get in the school.He needs the Therapy and this to me is the way to go with him.I can teach him what he needs here but he does need the Therapy.So waiting on the date for the meeting and praying the meeting goes well and Jax can get all his needs met!