HAPPY HALLOWEEN!

ENT appointment

Jaxson had his ENT appointment today!Was i ever surprised to learn his adenoids that were taken out in early June have grown back.The doc said this does happen but before he does surgery he wants a sleep study done as well to see if he has apnea or not.He did say when they do remove adenoids he will go ahead and take tonsils too.So we wait for the the appointment with pulmonology for the sleep study appointment.I was wondering why his snorting had started up again.Now i know why!

hugs and cuddles!

That's what i been doing the last couple days!Other then sleeping as i crashed big today from Nights of being up all night with Jax.I have cuddled and loved both my boys and have enjoyed every minute of it.Jax's smile just melts my heart.I say hello baby boy as i walk close to him and that beautiful smile lights up his face.I may not get sleep at night but the opportunities to just snuggle and rock him are the best.
Landen has also been a love bug and i am loving being able to grab it as he goes through spurts.He is now counting to 10 like a pro and is a wrestling fanatic and says John Cena really good.He is so much fun and such a crack up.
Tomorrow we have 2 appointments.My husband has a 9 am at the VA.Once he is done we will find a restaurant and lounge a bit... stop at the store and stock up on can goods and then head to children's mercy for Jax ENT appointment at 3 pm.Going to be a busy day.No school tomorrow so Mr.Landen is going with us.I still need to pack Jax diaper bag..Landens is ready!

while waiting!

While waiting for Jax to go to sleep i decided to look for some slippers for Jaxand Landen.The pair Jax has is almost to small.I did not find slippers but i did find this adorable sleeper for Jax.The best part of all i got the cute blue one for free.Now i am going to try to rock him again so mama can get some sleep!

Seven months

Today has been 7 months our angel has been home!I cant believe its been 7 months.

Home!

Jaxson has a viral sickness..On top of something going on in upper airway!His SATS are great but all the striding on his own mucus is something the ENT will check out on Friday.Jax has to be suctioned before each feed now.Has a nasal spray we use for 3 days and Monitor him.All the icky stuff gets caught in his throat and he vomits.I hope with more suctioning the vomiting will lesson.He is talking up a storm right now and seems to be in a good mood.I am glad he did not have something more serious !

Jax his horrible sick!

I am waiting on my aunt to arrive...She is driving us to children's mercy E.R.Jaxson has been having these vomiting spells for almost a MONTH!I cant get doctors to listen...they have gotten worse and he only held 3 feeds out of 5 down yesterday.He held his early morning feed down this morning.He is also spitting icky green mucus up and choking badly.He is not running a fever but oh my baby is miserable.I gave him some pedialyte in his tube this morning also as he did not have a wet diaper when he got up.Please say a prayer my Jax is going to be OK.
I have packed a suitcase...Just in case they keep him.We are 2 hrs from hospital and if they admit him its easier then having my aunt come back and pack him stuff and me stuff.I am hoping we wont have to stay but rather be prepared then not.

shopping for Christmas!

This is what i got Landen!I found him for 20 bucks cheaper at walmart then at toys r us.His very first remote toy..The remote is so big he should be able to see the buttons himself.These were the last items i needed!I have shopped clearance wracks all year and got most of their Christmas bought.AHH 2 down and 5 more kid to go.

I bought this dancing star Mickey for Jaxson for Christmas...He loves toys that move and talk and he talks to them.I could not resist...Down fall i did not realise that this Toy would be so popular!I had a hard time finding one.they are sold out in every store i checked and online.I found him at amazon.com.He should be here next week.

HAPPY 6TH GOTCHA DAY!

I love you so much little man!It sure dont seem likes its been 6 yrs already.I am so happy to be your Mama!

Opthamology appointment

The appointment went very well!The patching is working..his eye sight has improved and his crossed eyes also has improved.She said she wants him to patch for one more month then re examine his eyes(dilate) and all to see how good his sight is.After this he will have a surgery to fix the crossed eyes.They are better but not like she wants them.We will see if he gets glasses soon or if he wont need them at all.We have no more appointments this week thank goodness.
While in KC i did some christmas shopping.I about have the 2 youngest christmas all done.Then time to work on the rest of the kids.The 2 youngest are my easiest ones.

surgeon appointment!

Jax had his appointment today!They did not change out the mic_key because we had just been to the ER and had a new one put in.They did put more water in the ball and put medicine on the tissue around the mic_key as the doc said she would zap it lol.She also told us not to use the sponge pads(gauze) around it.Instead she told us to use Polymem non adhesive pads.She said it repels moisture better and got a script sent to apria for this.She sent us home with an extra Mic_key and also sent a script to apria for those as well.
We told her he has been vomiting nightly.She sent him to radiology for an upper GI to check his nissan to make sure it was still in tact.The upper GI showed nothing wrong nissan is fine and tummy is fine.So she said its definitely an ENT issue and got us an appointment for the 29Th of this month.I am praying we get something to help him.He is miserable he snorts just like he has his adenoids again poor baby.
Tomorrow he has a follow up eye appointment.I am hoping we wont need to patch much longer and can move on to getting his glasses.Jax is doing great!I just love watching him blossom.

He is still doing it!

Vomiting that is...Waiting on the ENT to call we are getting an appointment with them.He sees the surgeon tomorrow i am hoping to ask him what is going on.Jaxson has weird Blisters on him.I took him to the doc and he said he did know what they was that if they did not go away bring him back and he will send him to a dermatologist.So i am calling the doc tomorrow.When they pop they leave scars they look like water blisters..they are on his arm pit and belly now.They was on his legs and hands.He is growing so fast!The stinker has outgrown a ton of clothes..I am glad i bought bigger ones for him for the winter otherwise we would have to go shopping again.He is such a sweetheart!We get one thing straightened out and another creeps up.
I am noticing changes in his legs from the botox shots.He is more loose although they should improve even more.The new stretches he got from Pt are working out wonderful.I am so proud of Jaxsons progress he has came so far.I hope to get good news with both appointments this week.

CRAZY LAST FEW DAYS!

It has been crazy here...The other night Michael was putting Jax to bed and had left the extension on his mic_key.It got caught on his sweatshirt pocket and the whole Mic_key came out.I freaked a little but Michael handled it well.He was going to put a new one in but we did not have any lubricant.So we went to the Er and in less then 20 minutes we were done and on our way home.
Jaxson is still throwing up..Last night it was more like spit up.I don't understand as he had his reflux fixed .He will be seeing an ENT as something is going on just don't know what.The suction machine has been fixed which is a great thing.He got suctioned 3 times last night.He still has allot of secretions and snorting going on my poor baby.The snorting had gone away when adenoids were removed but something else is going on.I am looking forward to this appointment.
Landen has been so cute!The things Head toes and says keeps me in stitches.The newest is he lifts his foot and says..my toes and wants you to tickle his toes.He is such a character and cracks me up.
Rebecca is all teenager and is going through a tough spot right now.She had an upcoming eye appointment as she needs new glasses.Her lenses are scratched up.I am sure her tough spot is something to do with a friend at school.It is the only time she gets this way.She will work it out soon.
Linda is a senior this year and keeping me plenty busy.She gets her senior pictures taken this month so she is excited about that.She does odd jobs to make some money and is doing well.
Jax has appointments next week..Monday and Tuesday i hope all goes well at both these appointments.I hope he gets the news he don't need to wear patches anymore that would be awesome.Hoping next week is more mellow cause this one has been crazy!

PT

Jax had PT today and she was thrilled at his progress in 6 months he has been here.His head control is better and keeps getting better.The botox is starting to work and i am seeing his legs relax more and more now.He is easier to work with.She gave me some new stretches to do with him so i do them and do his oral therapy at the same time.Tummy time is slow going.He does wonderful for 15 minutes and then he wears out and is done.I am trying to increase this and hope soon we are up to an hour of tummy time.Would like to get him doing it several times a day.Our insurance does NOT pay for much therapy so i am working with them so we can stretch it to make it last.Jax is doing so well.In 6 months he should be fitted for orthotics or we hope.Tonight as i was doing stretches on him he giggled and smiled.He did not mind all those stretches like i thought he would.Such a strong guy he is.

Jaxson Concerns

Jax has been doing the strider stuff i talked about with lots of gagging which now in turn is making him vomit.I mean just not a little vomit its quiet a bit.Tonight i had him hooked up to his last feed and i heard him cry i went running as Jax rarely cries.He hat vomited which is bad and cause him to aspirate.I have a call in to the surgeon that placed his mic_key already to see if he can figure it out.His reflux issue had been fixed with a Nissan so i am not sure what is going on.Unless its because of the drainage from secretions causing it.I just don't know but him vomiting is a very bad thing he could aspirate on it and it scares me.Tomorrow i will be making more calls he needs to be seen.

Satruday was awesome!

We had a wonderful time yesterday.We invited my parents out for a BBQ and then out of the blue our oldest daughter and her fiance called and said they were coming to visit.It turned out to be a really nice day.We all had a great time.Jaxson was in a great mood all day and full of smiles for everyone.Hannah loves him and she holds him and plays with him forever.Landen also loves big sister and her fiance and played all day with them.Overall it was a fun day and we had a great time.Weather was wonderful food was good and the company was even better!

concerns!

I have some concerns about Jax.Getting a doc to listen is another story.Jax gags badly on his drool or i think that's what it is.I suction him and it helps for mere seconds.He makes a strider sound and just sounds like he struggles to breath.His oxygen levels seem to be normal.I will be honest i am scared of Trachs.But I looked up all the symptoms and TrachailMalaysia fits Jax to a T.I need a referral to get him checked out and cant seem to get one.I am Irritated.Something is not right with my baby and i don't want him suffering.One appointment had mentioned doing a scope then no more was said.The rehab doc is the only one i can get to listen to me.Maybe i should call her?

My Boys!

Good day!

Jax has not thrown up all day.Last bout was at 4 30 a.m. He has a hard time handling his secretions and strides on them.Sometimes he gags and sometimes he will spit.We go through several bibs a day with all the drool.I am not sure what to do about this but i think its what has caused him to get sick last night.I have talked to the doctors and have yet to get an answer,It is not reflux as he had a Nissan done when he got his Mic_key.
I am calling the surgeon tomorrow though as we never received a follow up appointment from his mic_key being placed and he really needs it.We also need a neurologist appointment I had cancelled the one we had because our respite child was here and we were having such a time with him i could not get away at that time(Husband was out of town).They were to call with a new appointment and did not.I get upset when i don't get these appointments that are needed.The surgeon one i don't know what happened.The hospital said he would have a follow up and i have heard nothing.So i will call and see when this appointment is.
Jax has been smiley today and very happy little guy.I am grateful for this as my arthritis has been in an uproar today and i am not moving to good.Going to take another jet bath here soon it does help allot.

Jax had a rough night

I don't know why but Jaxson had been vomiting all night.He was not running a fever and was acting as normal as always just having bouts of vomiting.Which scares me due to aspiration.I was next to him like glue and as he vomited i would suction him.I am calling the doc maybe its time to see a gastrointestinal doc.So far he is doing well today and i hope it keeps up.I don't like seeing my little guy go through that.

Insurance problem fixed

I am happy to say the problem has been FIXED.The insurance company has been in contact with children's regarding the wheel chair.The pre existing clause has been removed from Jaxsons insurance.So he will be able to get his wheelchair after all.
Jax had a doc appointment today!What a waste of time that was..He don't know what the blister like things are and told me to monitor them.If they don't clear up in 2 weeks bring him back.Jax could not get his flu shot either.They had none available to give.So we will go in next week and get his and Landens flu shots.The doc did give us a new script for allergy medication he will now be taking claireton instead of Zyrtec.The insurance would not pay for Zyrtec but will the claireton.

Jax

Jax has an appointment tomorrow.He has these blisters all over his arms and legs and a couple on his little hands.He is also getting his flu shot and hopefully a script for a different allergy medication.Our insurance wont pay for the Zyrtec he is on.I tried to get the 6 shots also he is due to get but have to schedule these later.I chose to put this pic up to show you his eyes.They are so much better now that we are patching.He is still patching but they do look so much better.

pictures!

Insurance

I made some calls today and am praying this situation is straightened out.I just received several medical bills that have not been paid.They have also been kicked back due to pre existing conditions.The woman i spoke to today said there was a glitch when the insurances combined and that it should be straightened out.That there is no pre existing conditions of any sort on our Jax.I could not figure out why some was paid and some was not.I hope its straightened out soon.Considering we had received pre approval letters for Jaxsons G tube surgery and the bill has not been paid.She told me to give it a week and if it is not straightened out to call her back.I am praying this is resolved quickly.

Weekend!

We had a nice weekend!Saturday we went to the Oktoberfest here and seen many crafts.I didn't buy anything but they did have some neat stuff.It was chilly but nice and the boys did not seem to mind it being chilly. we went to lunch at long john silvers and then went to get groceries.Sunday we stayed home and let the boys play all day.Linda went to help her aunt move some boxes and Rebecca hung out with the boys and her dad and I.I made a big pot of chili and cinnamon rolls .I did allot of extra things around here that i have put off doing.I am glad to got caught up on some much needed de clutter.I enjoyed this weekend it was laid back and nice.

Insurance problems

I received an email from children's mercy saying our insurance will not pay for the wheelchair because of pre existing conditions.I called the insurance company and the lady was RUDE not nice at all and made me mad.I asked her why it is pre existing because the benefits handbook states a child adopted or born with sp needs pre existing conditions do not apply.
She informed me that there is a pre existing clause(harrumph bull crap) and its because he did not have insurance prior.This is the most stupid thing i have ever heard.I told her Um he was an orphan from another country their was no insurance.Monday i am calling someone else that i think can help me with this matter.I am not happy.
My biggest thing is..they pay for his specialist visits and they pay for his hearing aids and his therapy.Why not the wheelchair.They said if it was not for this Claus it would be paid for.I will fight this.Jax needs that chair.He needs good back posture when we are out.He is getting to heavy to carry and we really need this chair.