ROUGH FIRST NIGHT HOME!

Last night was a tough one! Jax did not sleep at all and every time he moved his SAT machine beeped.Tonight i am definitely attaching to his toe instead of his finger.He moves his little hands to much for putting on his finger.He also drooled alot last night.It got so bad even after i suctioned his mouth that i had to put a hand towel under him to catch some of the drool.He also required ALLOT of suctioning in his trach last night.I am exhausted and got like 3 hrs of sleep.Hoping later today he will go to sleep for a few hours so mom can get some rest.Right now he is hooked up to a feed and still wide awake.Hoping a full tummy..fresh diaper and some suctioning and his morning med's will help him get some rest.

Today we are rearranging his bedroom to make room for all his equipment he needs.My son Brian said he would Make a bigger baby changer for Jax!I just need to get the materials for it.This would be awesome as he still uses his changer allot just to big for the one he has.So we are building one for him.I want to put the new one in the bedroom with all his equipment so everything will be close by and Handy when it is needed.I am adding a pic of him.we were waiting for his feed and the discharge papers at the hospital.

Baptism!

AT HOSPITAL!

I arrived at noon here at Childrens Mercy!The nurse called ENT nurse and told them we were here so the Ent nurse came up and had us get everything gatherd that we needed to change clean and care for the trach.She watched to make sure we had everything together and watched us clean and change his trach.She said we did a great job and that we can go home tomorrow.Michael and I are doing all his care tonight and today is the day we get to leave and go home!Michael and I gave Jax a bed bath!We washed ,dried and lotioned him.I had brought pajamas and we put them on him.He smiled and was like my mommy and Daddy are taking care of me.He aslo got to be held today and was so excited and smiled and tried to talk to us.He is such a sweetheart!All these nurses love him to pieces here.He just radiates that sweetness from him.This beautiful innocent child that we are so privalged to raise.We can make until tomorrow and we are outta here.I told Jax he gets to go home tomorrow and he smiled really big.

Viisit!

I missed my husband so much and my baby Jax.I was so excited to see them both today.The whole visit at the hospital Jaxson would not wake up and slept the whole time i was there.The surgeon did take the stitches out and changed the trach.He did great and did not cry at all.They also took his IV out today.He was in process of being moved from PICU while i was there.
Michael and i talked to the chaplain and we had Jaxson Baptized today.As we prayed and he laid there i felt a weight lift .It was like yes he Gods child now and i know he is watching over his sweet boy and loves him just as much as Michael and I do.Jax will get a baptism record he also got a teddy bear,and a teddy bear quilt and a baptism Shaw.I promise i will post pics soon the nurse was sweet enough to take pictures for us.
I was going to stay home tomorrow and celebrate Landens Birthday.The nurse told me that if i came tomorrow and stayed with my husband we could do the 24 hr care then we would be released to go home Thursday.So change of plans...I am going to hospital in morning to get this done so we can get our baby boy home.I don't want to miss Landens Birthday as i missed spending Christmas with him.The party has been switched to Thursday evening so we are home to celebrate.
Michael called me a bit ago and told me Jaxson is now moved out of PICU and into a a room.I am so thrilled me sweet baby is doing well and we will all be home as a family again soon.

REARANGING!

I could not sleep so i thought i would post.I am thinking of ways to rearange Jax and Landens bedroom.I may move him into laundry area...LOTS of room away from actual laundry room.Only because it would be closer to us and because their is more plug ends there which we will need for all of Jaxsons equipment.I need to get this done before Jax comes home.Also need to come up with shelving or drawers or something to store all his supplies we will need in.I already bought a shelf to put all his feeding supplies on.
I hope we can decide soon what we will be able to do to get everything organized and ready for our beautiful son to come home.

ROUGH NITE LAST NIGHT!

Jax had a rough night he was running a fever..not sure how high because Michael did not tell me.He did not sleep at all and was up all night and most of the day today.The Ent's did not change his trach today.Something about staffing issues so Jax did not get moved from PICU.Tomorrow morning is when it is scheduled for the Surgeon and ENT to come in and change his trach.He should then go to a regular room.The kids and I are going tomorrow to visit him.I miss him so much and i miss my husband too.We have not seen much of each other.
I come home to rest and end up more tired and worn out at home then at the hospital.Some family things with my sister came up and it has been run run run.I am also planning Landens Birthday party.His Birthday is Wednesday.I am also hoping that is Jaxson's discharge day from the hospital.Its late i am tired and still need to pack Landens diaper bag and pack a few things to take to Jax .I cant wait to get him home.All his presents are under the Christmas tree waiting for him when he gets home.I am hoping i can cuddle my sweet baby tomorrow.They have not let us hold him until the surgeon changes his trach.6 days not in our arms has been rough we held him everyday and held him a bunch.

another Christmas day Pic!

Jax Christmas day in PICU

Christmas day was a great day for Jaxson!He was alert and happy all day.Yesterday was the same he was happy and smiling allday.Today he gets his stitches out and his trach changed.He will be leaving the PICU and moved to a regular hospital room.We are a step closer to coming home.I am still scared as our future is about to change with Jax being full time care now.I know he needed this trach though he was so sick and now he looks better his color is better and he is happier.The hardest part is the fact that Michael and I will do all his care because whoever would help has to be trained to care for him.This i know will be an issue.Pray for us and our son and what our future holds with our Angel.We are on an uphill climb with his medical and praying it gets better for all of us.
We Have made the decision to home school Jax next year.It is best with all his needs and care the he get his schooling from us.

HORRIBLE DAY!

Yes Christmas for me was horrible!I knew it was going to be tough being here on a Holiday!This was awful to be on this floor with really sick babies and sad parents.Then their is visitors all day visiting their loved ones here.Jax and I alone...In a scary and sad place that no one unless they been in a PICU can comprehend.To top it off i was hurt that my Parents could not even call and say merry Christmas.Not once have they called ever.
My beautiful Mother in law called the house to see how Jax was doing how wonderful she is i know she loves all of us as we love her dearly.My parents live 5 miles away and go by my house all the time and NOT once did they ask.Nor bother to say hey maybe we should call Denise and wish her a Merry Christmas after all she is at hospital ALONE with Jax and she is our daughter!I don't want to sound selfish but i feel hurt i mean its a sad lonely place here and how hard is it to call.
Then i was talking on my cell phone and dropped it to the point its in peaces...Nuff said on that .My wonderful husband is bringing a cell phone tomorrow.I miss my kids and my husband i am looking forward to a break but will miss Jax so much!

SORRY NO POST!

I have been so busy between the hospital and home i have not had a chance to update everyone.Jax had surgery yesterday at 1:30 and it lasted about an hour.He now has a trach and he is breathing so great.We had to take a class on how to care,clean and change the trach.It was very daunting and overwhelming.It is allot of information to take in and i thought i was going to break down and cry.I did not though .I went home to rest and Michael stayed last night.I came back today so we could take the CPR class we were required to take and got all that done.Michael went home tonight and will be back on Sunday.So jax and i will chill out here in the hospital for the holidays.
I brought his red Christmas blanket and his picture of him and brother on Santa's lap.The hospital was giving out small trees and bells to go on them.So we got one and now Jaxson has a Christmas tree in his room.While Jax may not be home for his first Christmas we will have one here complete with a tree.I brought one of his Christmas presents with me for him to open on Christmas day.The rest are at home and then what santa brings him as well as his stocking full of goodies will wait until he gets home next week.
Jax is doing really well.He is breathing better and wow has he been a happy guy today.I am scared of the trach a bit but it is getting better.I have suctioned him today the big step will be changing the trach.He is awake right now and watching the mobile the nurses brought in for him.I will be so happy when i can hold him again.

I am home for the night!

Today the ENT came in and we discussed a trach for Jax.Jax will have surgery tomorrow or Wednesday still waiting to hear when to get the trach placed.This is not an option he quits breathing for a few seconds which is apnea.He struggles and works so hard for every breath that he has become tachycardia.He does have Pneumonia and is on antibiotic.I was upset when they told me our sweet baby will not be out of hospital for Christmas.I am really bummed about this being his first Christmas home and all.
In the long run this is for the best for Jaxson's health.It will be nice to see him feel better.I will go to children's when he has surgery and then on Christmas day i will spend part of the day home with the kids and part of the day with Jaxson.Michael is with him and is refusing to leave until Jax is released.I am going to try to make him come home after a couple days.The hospital can wear you out quick so we need to share this.It is hard on me being away from Jax.But i know i am needed here too.Landen is a mommies boy and it is extremely hard on him when i am not here.

Jax needs Prayers!

Saturday Jax had a seizure at 6 pm,It was a grand maul and the first one he has had in like 6 months.About 1 a.m he had another and this one was bad lasting longer and leaving Jax irritable and not feeling well.I went with my mommy instincts and headed to the ER.Once there Jax had another Grand maul so the doctor gave him ativan!This did not work and he had 3 more seizures back to back he was given dilantin which finally stopped the seizures.So he was ambulance to children's mercy hospital.Jax went from seizures to major irritability.His trachea has decided to collapse or so they thought.He was intimated and put on a ventilator.He has now been weaned off and is just getting oxygen now.His sats are staying great and his blood gases were fine.But he still struggles with some type of obstruction in his airway .He works hard to breath but is maintaining.So i set in Picu worried sick about my little man and just wish they could fix all his ailments.
Please keep Jaxson in your thoughts and prayers!I am not sure what they are planning on doing to help him tomorrow!I have had a couple struggles with the docs already!Please pray for my sweet beautiful boy to get better and get the help he so deserves.

NOT MUCH GOING ON HERE!

It has been a normal week of appointments and holiday preparations around here.I stayed up last night and wrapped a ton of presents.I am happy to report i am done shopping now.Michael has a couple presents he needs to get Otherwise we are done.

Cloth diapering...I decided to go exclusively with them.I have tried every disposable for night time and he pees through them all.If i add inserts to the cloth he does not pee through.I was online last night and found some diapers that had really good feedback on them so i bought 4 of them to try.They are super cute too!One is camo..one has jungle animals ..One is orange soccer ball and the other is green soccer ball.If these are good diapers i want to go back and buy the adorable zebra print one.

I was so excited as i thought i had a part time job.It will not be happening i didn't even get to the interview when a call came in saying they changed their mind.I do Patient care attendant where the person i take care of is the person who would hire me.So i start at ground zero for a job.I will wait to get through the holidays then really start looking again after the kids holiday break is over and they are back to school.

That's about it around here !Its been a busy yet Mellow week mixed in one..Kind of odd for the Miller household HA HA.

Another Christmas cutie pic!

TOO CUTE!

INSURANCE WOES ARE OVER!

A woman from our insurance company called today to tell me that the pre existing clause on Jaxson has been removed .It was a glitch on their end and she called excited to tell me it was fixed and all the claims that were waiting are being taken care of today.Even his wheelchair claim..She even called the company that built his wheel chair to Inform them of this.I am just thrilled.All the stress is now gone.
The Supplier for the Mic_key issue and polymem is also fixed.I also got a call the Rudy our pug puppy is ready to come home.I will pick him up on Monday is all goes well.I am so happy that all these issues are fixed and i can relax now!
This will be a Amazing super weekend we have some wonderful visitors coming to see us.I am so excited yet a tiny bit nervous.

DIAPERS!

I use cloth diapers for Jaxson here at home!When we are at appointments or out of the house i use disposable.I am considering going full time cloth.I have tried every disposable diaper on the market and he pees right through them.Cloth he hardly pees out of.I change him often in both disposable and cloth and he still pees the disposables.I do put a disposable on at night and i have put cloth.Either way works and either way at night he pees out.
I have to admit though i have saved a ton with the cloth diapering and i have not minded it at all.I buy 1 case of disposable diapers and they last forever!I have really saved and am glad i went with cloth diapering him.

HOW CAN YOU RESIST!

A beautiful face like this?I love this sweet little man so so much!

ONE OF THEM DAYS!

Where i am frustrated with Insurance companies and supply companies and doctors.It like everything gets on track and then something jumps off the track causing me frustration.Today is one of them when the surgeons office called me.Jaxson has been throwing up a whole feeding at least once a day.Almost 2 months ago we seen the surgeon and told her about it.She sent him for an upper gi to make sure his Nissan was still intact.Everything looked great and all is still good.But the throwing up remains.The sleep doc emailed to tell them of our issue they call today.I tell them i know its reflux as he is doing it during his feed or withing the hour after his feed.They want to do another UPPER G.I. I am frustrated i am telling them what it is just prescribe a med to try and i bet this will stop.
Then the lovely insurance...Somehow his policy has a pre existing clause!It was put in wrong when we put him on insurance and I am working to get this fixed.Policy is..a child adopted does not fall under pre existing as its like the birth of a child.So why are we having issues?
The medical supply is another thorn in my side.The surgeon gave them a script to order the Mic_key and polymem.They call to say they don't supply the mic_keys and they could not read the script for the polymem.I handle these calls and my husband took the call i could not call them back.The surgeon's office is calling apria because they said yes they do supply Mic_keys they have lots of patients that get them from there.Its one thing after another.
I get so overwhelmed as these are things we should not have to fight so hard for.It lots of calls extra testing and appointments that are UN necessary.Its just one of them days!

A NEW MEMBER OF OUR FAMILY!

This is Rudy!My husband got him for me for Christmas!I have been asking for a pug ever since our Bella (Bella was a pug also)passed away.So for Christmas i got Rudy.Rudy will not join us here at home for another week as he is not quite ready to leave his mommies side.I am thrilled and cant wait to bring him home.I picked the name Rudy for him i took one look at him and the name stuck.I hope to get better pictures once Rudy comes home.This was taken on my camera phone.Is he not the cutest?

Depressing appointment!

Jax had his sleep consult today!They are positive Jaxson has some sleep apnea.She noticed how his breaths heavy and his chest wall really works hard to breath.The snoring and the constant raspy sound.She is positive he has pockets in his lung that is collapsing.He got an xray done of his lungs.She set up up a sleep study but we don't have the date yet.He will also be seeing pulmonary for his asthma she thinks albuteral is not the answer.Also they are FINALLY trying to get a script for reflux..He is averaging vomiting a feed a day.I am Praying that a cpap will work for Jax and not the trach they want to do.I told her we want to weigh and try all options before moving in for a trach.She did agree with this.She also said Pulmonary wants to see him before they script a med to help control his saliva.
Jaxson has scoliosis Rehab had told us it is possible he has it but the doctor today confirmed it.I knew he did as his spine is bent to the side and cause a knot on chest wall.This is all coming together now.Also Jax will be seeing a new set of docs as his primary doc.Childrens mercy has a clinic called the medically complex clinic and he will be going there for his care.Yes its a long drive for us but all interest in my child it is for the very best for him to see these specialist.
I called the company today on Jaxson's wheelchair!It has been way over 3 months and the chair is ready.The insurance company authorized to pay for it and now are holding it up.The company that made the wheel chair submitted for it in October and have not heard nothing from Insurance company.I will be calling the insurance company tomorrow.I am upset they authorize these things and then don't follow through.Jaxson really needs this wheelchair.I cant put him in school without it.Also his stroller is breaking and to be honest i just cant position him right in the stroller.We were really hoping to have the wheel chair before Christmas.
Our insurance has been really good!There is only 2 things we have struggled to get paid..His hospital stay which was authorized and still is not paid.We got the run around on this..First the ins.company wanted a itemized bill i made the call and they received it.Then they tried to pull pre existing conditions!I had them there its illegal and they could not do it and know it.Now they are claiming they are changing their Policy.This bill is from July when Jax got his Mic_key button.Now the wheelchair..which was also pre approved.Hmm isn't it funny both of these are in the double digits and they are refusing to pay but pay for all his other medical stuff?
The kids and husband and I have never had a problem with our insurance covering us.Just certain things on Jax.. I don't understand especially considering the pre approval.Please say a prayer for our Jaxson i am not ready for a trach and pray we can get his Much need wheelchair very soon.

MY TEST RESULTS!FAMILY UPDATES!

The Doctor called and its good news!No mycentic cyst YAY!I have a kidney stone that has not passed causing some kidney pain so i am drinking tons of water to pass it.I am happy as i have nothing that could medically be bad.This is a big relief!
All is well at home.Landen is changing in leaps and bounds!He is talking more and learning to solve problems on his own.It is time to try and potty train him again.We have worked hard on it and the past month i gave up.Well the newest thing he comes and gets me and says...change my poo poo .I told him if you can tell me this you can go on the potty.
Jaxson has had some slide backs poor baby.He has not felt good all weekend.He gets cold so easy poor baby is not used to this cold Kansas weather.His legs are cramping more and more and he is irritable.We continue with sleep issues because of the cramping.I have given melatonin and it does not even help.So Michael and I work in shifts for the nights he wont go to bed and is uncomfortable.At least we both get some sleep and are able to function with the other kids.
Rebecca She is blossoming so much.She is into poetry and History.She wants to learn all about different countries she is really focused on learning about Egypt.She likes to draw and now want to start painting.I made sure she got art supplies for Christmas this year.She is an amazing child and i have been graced to be her mother.
Linda is so excited about graduating high school this year!She wants to attend a college in Topeka next year which is great.She wont be far from home so she can come and visit often.She loves the boys so much and is such a great helper.She wants to be a special education teacher and would be wonderful at this.She helps with a high school boy at her school who is allot like our Landen and the teachers and principle rave at how awesome she is with him.
My 3 grown kids are doing well..Hannah passed her finals that had to be done before Christmas break.William is still struggling to find work.Brian is working for his Dad to make money for Now!He has been applying for other jobs as he is saving for his future wedding to Brittney.I keep telling them both they are young and have lots of time before marriage.

GRAB A KLEENEX!THIS IS VERY MOVING!

NICE DAY!

The weather was beautiful today..Did not need a winter coat a jacket worked perfect.Because it has been so cold the last few days we have kept Jaxson in the house he does not like the cold and shivers.Today being nice Michael and Jax and I ventured out to do some Christmas shopping.I was pushing Jax in his stroller in walmart we were waiting in the check out line when one of walmart employees started laughing and said..your baby just peed on the floor.I had just changed his diaper right before going to walmart .So we checked out and grabbed the diaper bag and a change of clothes(i keep 2 sets in the diaper bag).I got him changed and it was time for him to eat.We hooked him up to a feed and we were hungry so we had lunch at Pizza hut.After we went to a couple other places to eat and then headed home.We did not get allot of shopping done but it was sure nice just to get out of the house.We all needed it.
Tomorrow morning i get my ct scan done.I am praying for good results on this.I don't want it to be a cyst!

CLOTHES!

I just supplied my adorable great nephew with a bunch of fairly new clothes!Jax and Karter were once the same size!Jax has blasted past Karter and now Karter is getting Jaxson's hand me downs that are brand new.Winter outfits i bought and MR.Jax has worn a couple times no longer fit.They fit this cutie perfect i am grateful i can pass them to him.He even got a winter coat!His mommy said he needed one and i happen to have one my Chunky monkey was to big for.This is my great nephew Karter is he not just ADORABLE.He is a little love when he comes to my house Jax and i both get lots of kisses!

MY DOCTOR APPOINTMENT!

I went to the doctor today!There is definitely something going on with my kidneys.I have felt so bad the past few days.I been feeling bad for a couple months but the last few days have been the worst.He thinks i do have another mycentic cyst.I also have a kidney stone and its possible i may have more then one.I had blood in my urine indicating something is going on with my kidneys.I get a cat scan on Friday and it will show if i have a cyst or if its kidney stones.The reason he thinks its cyst...My stomach is really protruded to the point its very painful and hurts like it could just split open.The other is pressure in the ribs and pressure on oesophagus causing horrible heart burn.I cannot lay on my stomach at all as it feels like my kidneys are going to push right out my back.The bummer is i wont know the results until Monday.Doc put me on antibiotic called bactrim for a week.He thinks i am on the start of an infection.I am miserable and am trying to relax as much as i can.This is hard to do at times but i sure try my best.I just want to feel good!

WOW!

today his height and weights are...
31lbs 37 inches and hc was 43.4 cm

8 months ago....16lbs.27inches andhc was 42 cm
My lieel man has GROWN so much....almost tripled weight and 10 inches in height in 8 months WOW.

HOLIDAY AND WEEKEND

We had a nice Thanksgiving with all 7 of our kids and 3 of them had their boyfriend/girlfriends come as well.My husbands Dad also cam and We invited a couple that had nowhere to go for the Holiday.It was nice turned out great.All the cooking and cleaning wore me out and i have not been feeling good the last few days.The weekend we spent putting up the Christmas tree and decorations.I have been ready to put the tree up for a while now.I am excited because Jax is home this year and its his first Holidays with us.He loves the tree and smiles at it so cute!Landen also loves the tree and walks up to it and says...PETTY(pretty).Michael and I also did a little bit of Christmas shopping.We still have allot more to do.
Jax appointments are finally starting to taper off.I would like to see an increase in therapy for him though.Tomorrow he has neurologist appointment at Mercy and while there i need to stop in hearing and speech and get his hearing aid fixed.We got new molds which come with new tubing.I cut the tubing to short on the left one so i will take it in and let them fix it.
Jax is growing so fast he outgrows his clothes quicker then i can buy them.He is just so chubby but oh so sweet.I can hardly believe he has been home 8 months now.
Yesterday while at walmart Santa was there.Landen was in the cart i said Landen do you want to see Santa?He says...I LOVE YOU lol i took that as a yes and put him on Santa's lap.Then it was Jaxson's turn he would not wake up so he is sleeping on Santa's lap LOL.I got pictures but have no scanner.I have put going to the doctor off long enough so tomorrow i will be scheduling an appointment.When i make myself sick just sweeping the floor or doing dishes something is not right.I need to stay healthy for this family.

So much to be Thankful for!

I wont list everything thing i am thankful for But i will say I am Thankful for a precious little boy who entered our lives 8 months ago.I am so excited about the holidays this year because he is here with us.His very first with his family!He is so loved and cherished and i am just so excited about the holidays this year.Happy Thanksgiving...May you be blessed with Family and friends and Gods provisions.

YUCK THE JOYS OF THROW UP!

Jax has thrown up allot today and has created a ton of dirty baby blankets,bibs and clothes.I know its reflux with some added constipation(Miralax given)Big results will come in the A.M.He has an upcoming doctors appointment to try and get yet another doc to listen to the the parent who is with her child 24 7 knows all his quirks and what is going on.
Aside from Jax being sick things have been great here..Landen is funny as always having me in stitches with his antics and funny things he says.Right now he is stuck on listening to his little people Christmas CD and plays Jingle bell rock repeatedly doing a dance along with it.He is so much fun and the Love yous are coming out more and more.
The kids are now out of school until Monday and will be keeping me plenty busy i am sure.I have so much to be Thankful for this year and have been blessed with so much more then i deserve.God is awesome!

Cleaning got me thinking!

I been cleaning the house to get ready for Thanksgiving.Wow the stuff you collect in a few short months.I have thrown away and hauled off to the thrift store.It is crazy how much stuff or junk we collect.I can see how we can use our Money and time more wisely.Giving to others and less for ourselves.I mean who needs STUFF when their are kids all over this world that need worse then we do.Like all the orphans who need homes and go to bed Hungry,dirty,and no one to read to them cuddle them and tell them how much they are loved.
I want to devote more time helping and giving to others this season.To ones that are less fortunate.I want to do allot more for Others.Adopt a family maybe?Bake home made goods for the elderly?Donate more to the children on Reece's rainbow so those beautiful Loves can find a home.We are blessed with health and happiness why not bless someone else who deserves it.

Diagnoses!

I have never really talked about Jaxson's diagnoses.We are still going through appointments and i am sure before said and done there will be added ones.Jax has quadriplegic spastic cp...This means all limbs are affected and spastic means they spasm when he stretches or gets excited(arms mainly).He has bronchial asthma(mild).Not many problems with asthma like he did have.Hearing impaired...He is profound in his left ear..and moderate severe in his right ear.He wears hearing aides and it has helped.He loves to listen to music.Visually impaired...He was deemed legally blind..I am not sure how much functional eyesight he has but he tracks us well from across the room!He also loves to watch cartoons..yo gaba gaba is his favorite.Microcephalic..This means his head is small and does not grow like it should.There is no corrective surgery for this it may cause him problems and it may not.Failure to thrive..Of course he has this as he is so tiny for his age and i don't ever for see him reaching age appropriate size ever.Seizure disorder..This is from the many diagnoses he has..cp and micro alone can cause the seizures.Lastly he is an aspirator which requires him to be tube fed.He is a walking Miracle and God was truly with him as aspirating is deadly and could of killed him and he has been doing it for 5 yrs untreated.
We are waiting for the appointment at Nueros to get ct result.I had the appointment but ended up cancelling because we had a respite child who we could Not take with us and Hubby was out of town.We are scheduled November 29th.I think i know what the results to this will be.Jax primitive part of his brain is damaged which means he does allot of things an infant does!I am anxious to find out more.Jax also has a curvature in his spine and we were told he more then likely has scoliosis.
Now with all of this would we have adopted him?I get asked this allot and the answer is YES! We knew going in to this adoption he was a very special needs child.We are blessed to be this angels parents.We want him to come to his full potential !Do we expect him to overcome and be Perfect?NO this is not even a reality.One step at a time and we praise him for anything new he has accomplished.He will improve in some areas but wont in others.This does not change how we feel or look at him .He is perfect in every way to us.Some of the questions we get really make me mad and i know people are curious but hey that's my kid you are talking about.As many needs as Jax has and has went untreated and he survived tells me our little one is a fighter and God had his hands over him.Emmanuel the meaning...God is with us..He truly is with him and always will be.

RIDE THE HORSEY!

He loves to be bounced !

JAX SPEECH APPOINTMENT!

Jax speech appointment went very well and he gave us a new technique to use.He wants me to use a sponge swab with orange juice on it and go back and forth over his tongue after i do his mouth massages.It makes sense..tart things make you swallow.I know for sure Jax is refluxing it happens at the end of a feed or within the hour after his feed.Jax has a doc appointment Monday and i will be discussing this with the doc.He also has those weird blisters again so we will discuss this also.Today has not been a good day for him he has slept allot today.He does not seem sick just sleepy poor guy.He is growing so fast and so smiley.I love his amazing smile.He is so sweet!

Michael and I are headed to St.Joe this week to get the ball rolling to get a SS card.While in st Joe we will be taking him to sears to get his pictures taken.This is something i been wanting to do and why not while we are in st Joe anyway.

OOPS!

I goofed up on appointments.With Jax being sick..me not feeling well and just being busy with other things i goofed up the appointments yesterday!Michael had a follow up with surgeon,Jax had sleep consult and speech/oral therapy.For some reason i thought they were today and had to scramble to reschedule them.So today at 3:30 Jax had therapy,Michael has follow up at 9 a.m. tomorrow and the sleep consult is for December 7Th.I don't like messing these up because they can be so hard to get.I know everyone makes mistakes but i try hard to stay on top of the appointments.
The weather is cold here and has been raining.Some areas around us are getting snow.I so hope it passes us i am not ready for the white stuff just yet.All in All things are going pretty good here at home.I am excited about cooking and having Thanksgiving dinner here.I need to get in gear and make my grocery list.All my kids but one will be here.Brian is having Thanksgiving dinner with his Dad.William chose to have it with us instead of his Dad's(lots of reasons for this).I am hoping Brian will show up later in the day.Not much happening in the Miller household.

Nothing New

Nothing new going on around the Miller house.We stayed home all weekend.Jax is feeling better and has been smiles all day today.We had no appointments today so all was quiet .I still am not feeling the best and boy can i tell.My house is suffering.Tonight i cleaned the kitchen and baked some peanut butter cookies for Michael and the kids.I am still finding things to drop at the thriftstore.Its been quiet not much to share the last few days.

THE SICKIES!

Jax woke up with a horrible cough.He coughs so much he has vomited all his feeds.We are cutting them down now and bolus pedialyte in.I have been giving him Tylenol and alternating it with ibuprofen as he started a fever.He was already vomiting prior to this we are positive he still has reflux issues.I made an appointment with our doctor but he was full so Jax cannot be seen until the 22ND.If Jax worsens we will head to the emergency room.A failure to thrive child vomiting the calories he gets is BAD.It is bad anyway as he aspirates.I have also been giving him a cold and cough med.I hope he gets better quickly.
I myself am having some problems with my stomach and kidneys.I did make an appointment with my doctor.I hope it is nothing serious.I need to stay healthy for this family.I slept allot today as i was feeling so poorly.
Michael is doing really good.He is sore but says overall his shoulder feels better then before surgery.He has a follow up appointment this coming Wednesday.
It is cold here so no plans for the weekend.With Jax sick,Michael on the mend and myself not feeling the best we are hanging around home all weekend.I hope to keep Landen and Rebecca well Linda also has a nasty head cold.
I got my Reece's Rainbow Christmas tree angel ornament today!I am praying this precious little angel finds a family.She so has my heart.

Jaxon,s hearing and speech appointment

His appointment went very well.His hearing aids are working great although she did make new molds as his are loose and not making a good seal.He will go back in 6 months and have his hearing tested again in 1 yr.He is doing really well he is such a sweety.
Michael is healing good!He is behaving LOL and not using that arm.He does not sleep well and is up and down several times a night.It is hard to lay in one position for him as he likes to sleep on his stomach and cannot right now.The kids are all doing good.Landen keeps me in stitches with his silliness.Rebecca is all teen and everything is so Huge to her although to adults its just trivial.Linda is doing great and loving school this year.I am scheduling an appointment for myself tomorrow in hopes to figure out whats going on with my stomach.All is as well as can be in the Miller house hold.

TUMMY TIME!

Jaxsons appiointment and Husband's surgery

Today Jax had another eye apppintment he has been seeing the eye doc once a month now for 6 months.I was frustrated.All these months they have been telling me he was near sighted and has strabismus both correctible.They have known all along that Jaxson is way more visually impaired then that he is legally blind.Did they bother to tell me so i could get vision therapy in place?Absolutely NOT.I was mad and told her why was this information not shared with us?She said is he getting vision therapy?I said why would i set up therapy for near sightedness and strabismus i had no clue of him being this impaired.It does not make me love him anyless my biggest problem was he is MY CHILD and i am his mother i need to know EVERYTHING about him to better help him.
My Husband had his scope yesterday of his shoulder..Once in they found a bone spur floating around and it was tearing up his rotar cup.It worked like a piece og glass.He was in surgery for an hour and a half and is home recovering.He is doing better today he had a rough night last night.He has been having problems with his shoulder for years it had increasingly got worse over the past year.He is now on the mend and then comes the fun part for him Physical therapy.LOL or as he calls them those mean drill seargent ladies .

Appointments squared away!

I had to reschedule Jaxson's sleep consult until next week.Michael is have laproscopy on his shoulder tomorrow morning.So i changed the appointment.Wednesday he has a follow up eye appointment and Thursday he has hearing and speech.Going to be a busy week but he is worth it.

Orphan Sunday!

I am blessed to have adopted 3 children who are orphans no more!I am so Thankful that God has blessed us with all 7 of our babies and led us to 3 of them through adoption.

Nothing sweeter then this!

Jaxson laughing as his sister is tickling him...We dont get to hear this laugh much but boy when we do we all love it.He has the best giggle.Its music to my ears.

Happenings!

Things have been busy the last few days here...Michael and I have been decluttering and moving furniture cleaning behind it .We have taken a bunch of stuff to the thrift store.Gave things to my oldest son for his apartment and gone through all the summer clothes and put them away.I messed up on appointment.Jax is suppose to have his sleep study consult on Tuesday..Michael is having surgery on his shoulder that day so i need to change the appointment day.
I have not been feeling well and need to see the doctor.I have rapidly gained weight and have pain in my Kidney.I am worried i may have another cyst in my stomach .I am praying this is not what it as as they surgically remove them.The last one was the size of a volley ball and i was in the hospital for 8 days.I can not be away from Jaxson that long.
I been doing therapy on Jax !He loves the ball i stretch him on and giggles .He is up to 30 minutes of tummy time now without wearing out.This weekend and week we keep it at 30 minutes and try to increase the following week.He will be getting another round of botox shots soon.They are painful to him and i am praying the second time is better.We seen a little change from the first time but he still keeps his legs up and very tight.He does well with all his stretches though.He has no desire to pick up a toy.He did one time and put it to his mouth.I work with him holding and grasping toys as well.He is so funny when i do his oral therapy massages he looks at me funny and then he giggles lol.
Linda got her senior pics taken and her invitations ordered she is happy to be graduating this year.She has a college all lined up as well.Rebecca is doing good she cracks me up with some of the stuff she says.She had an eye exam and got new glasses.Her old glasses were child size frames and she outgrew them .The lenses were scratched so she was due for a new pair.She looks so grown up in her new ones.
Landen oh my this child of mine is so fun.He learns new words everyday and uses them well.His newest is actually a sentence...I want candy lol.I was doing ABC's with him the other day and he did great until we got to the letter O.After that they were all O's.I have been working hard with him on dressing self.He can put his pants on but struggles with his shirt and his Jacket.We will get there i am positive of it.I have noticed he is signing allot more at home now and not just at school.He can verbally say please but will also sign it when saying it.He does thank you really well now and your welcome.He knows several but these are the ones i can get him to do at home.He is a busy little guy and keeps me on my toes.He is a mess maker and i am making him pickup more.He don't always clean it up but it has improved.
My 3 grown children are all doing good.My oldest son is still looking for a job.I am praying he finds something very soon.Our oldest daughter Hannah is in her last year of college.She is so ready to be done.My Brian oh Brian he has so much to learn about life yet.He is 18 and quit his job and now realises his big mistake.He is living with his dad right now and his dad pays him for work he needs done.His dad owns a farm so there is always plenty to be done.
Michael and i both have an ailment right now and hope we are back up on our feet soon.Tomorrow we are going shopping for a fold up table and chairs.We need these extra for Thanksgiving dinner we are having and they will always come in handy for the future.Sunday we are resting for the busy appointment filled week ahead of us.

sleep study consult!

His sleep study consult appointment is November 9Th.He has to be evaluated before it is scheduled.Once he gets this done he should have a date for sleep study.Once that is done..Ent will set up another appointment and we will go from there.Going to get very busy but worth it if my boy will feel better!

He is growing so fast!

I cant get over how chubby Jax has got!He wore a 12 month clothes 7 months ago and now he wears size 2T.He weighed 16 lbs when he came home and now weighs..31 lbs.He is just the sweetest little guy and such a blessing to our family.He smiles allot.I love in the mornings when he is waking up and walk in to his room look down on the crib and am greeted with a huge smile.I Love when he snuggles in for cuddle time which he loves.He has came so far in the 7 months he has been home.

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.

sore legs!

Jaxson is sore from the botox.He cries when changed or moved wrong.Poor baby i hope the soreness goes away quickly.I don't like seeing him hurt at all.He is napping right now and when he wakes up i will give him some Motrin.

Landen struggles!

Landen showed some really bad behavior today at school.When it came time to get on the bus to come home he threw himself on the ground.When his Para was able to get him up and got him on the bus she tried to buckle him in.This did not go well he pulled her shirt scooted out of seat belt and kicked her.THIS IS NOT MY LANDEN!He has NEVER acted like this before.Landen was taken off the bus and put on another bus as the bus driver is also a para on that bus and works in Landens class room.He got on her bus no problems at all.
I will be calling the teacher tomorrow to see what we can do to make this situation better.I know a few kids on his bus have picked on him.I did complain and the kids got in allot of trouble.But evidently something is going on.Landen has never refused to get on the bus before.We need to get to the bottom of this right now.It has to do with riding the bus.He was great at school all day no behavior problems until time to go home.Landen is a sweet gentle boy who laughs and smiles all the time.I need to know what is happening on that bus.

Precious!

Jax had his little hand on his daddy it was so cute!He has never rolled on his side like this and curl up close.Hubby said he woke up because Jax was squishing him.

Botox appointment!

Jax appointment for his botox shots was today!It was very painful to him and hard for me to see him go through it.The doc said No therapy for 2 days and then he can resume as normal.He got shots in both legs front and back.His legs are so stiff and he keeps the curled up most times.They said in 2 weeks we should see a difference and in 6 months a HUGE difference.If his legs start relaxing more it will be much easier to dress and change his diaper.I am glad we don't have to do these often it was so painful for him and broke this mama's heart to watch him go through it.

Love this sleeper!

looks like a baseball outfit shoes and all!To CUTE! Of course the little one modeling it is just the cutest ever!

botox appointment!

Jax has a botox appointment at noon today.Please say a prayer for my sweet baby.These are painful and they are going in his left ankle.These shots are to help with the tightness of his tendons and muscles.His foot in turns so bad it almost looks clubbed but it is not.
The doc wants to do 6 months of botox and then see what next step will be..Casting or Orthotics.We are hoping for Orthotics.these are suppose to help loosen the tendon and muscles so if he gets orthotics it wont tear his skin up as bad.Pray my boy does fine.I don't like seeing my sweet smiley boy put through any pain.Its going to be hard on this Mama.

eye appoinment!

I forgot to post about Jax eye appointment.We have to continue patching for another month and check in again then.His good eye is turning in and the eye doc said that is actually a great sign.She said his weaker eye has improved.So we are still patching.He don't like it but it keeps him from having surgery.Oh and the best news of all...he weighs...are ya ready for this?HE WEIGHS 30 LBS.His sister calls him her little fat cake.

6 months!

Today marks 6 months that Jaxson has been home with us.I can hardly belive its been 6 months alrady.It still feels like yesterday when i first seen him.In the past 6 months we have seen great strides in out little guy.I am so thrilled he is our son.

some things about Jaxson!

Things Jaxson loves...
to be sang to...Jesus loves me is his favorite
To be held and cuddled
to play kiss my hands and feet
His v_tech teddy bear
His Einstein ball
Listening to his daddy play the harmonica
play patty cake
Play peekaboo
His siblings
His mommy and daddy(love the smile he gives us when he sees us)
Bath time
Things Jax don't like...
Riding in the car
being on his tummy(even though he has too)
Thunderstorms
Not to many dislikes at all!He is such a wonderful little boy and has came so far in the almost 6 months home.

Opthamology appointment!

Yesterday Jax had an eye appointment.His strabismus is looking allot better.We still have to patch his right eye for another month as their is signs of it still being more dominant.But overall they are much much BETTER.Jax was in a wonderful mood yesterday and smiled all day long .I was so proud as the last few days he has taken an interest in his toys and now picks them up and puts them to his mouth.This is big for him.He also loves to plays patty cake and gets really excited and smiles real big.I am so proud of our little guy.

stuff!

Landen is sick and is on his second day home.He has a cold and cough and is cranky.This morning he was running a small fever and had a small seizure(after he had his meds).I am hoping he is well enough to return to school tomorrow.

Jaxson is doing awesome..he loves our skeleton the plays super freak and dances and he smiles at it and talks to it.Tomorrow he has an appointment with Opthamology for a check up on the patching his eye.I noticed the good eye we are patching is now crossing more then ever.I will mention this to the doc tomorrow.I have tried to do therapy with him for 2 days but he is having allot of pain in his sub flexed hip.So i do upper body with him and arms.I also do some tummy time as well.I have fought trying to get more therapy in place and while i was working on that did allot of extra here.He now has therapy set up starting on Friday!I am excited about this.

Rebecca is struggling with three of her classes.She gets very upset when her grades slip.I am working with the school to get her extra help in these classes she is having a hard time with.She is such a smart girl and gets so upset if her grade drops to a b or c.

Linda is loving her senior year this year.She works at the special needs preschool and LOVES it.She does this in the afternoon and gets so excited to tell me about her day.she wants to go to school to be a special ed teacher.I am glad to see a big turn around in her.Linda has been my difficult child that past few yrs.Things are much better with her and we have less power struggles.

My 3 older kids are all doing well.Hannah is a senior in college now.William moved into an apartment and is hoping he gets a job he applied for.Brian works at McDonald's and gave his 2 week notice to go work with his dad on the pipeline making double what he does now.
Michael and i just go with it all and enjoy watching our kids grow and change.Life is good!

SAY CHEESE!

That is just what he said as i snapped his picture.Silly Boy!

Chiefs Fan!

My husband and our adorable son watching the Cheifs game.My husband dressed him LOL.He said every chiefs game that plays that is the outfit Jax will wear.

Another zoo Pic!

I am having a hard time with my internet connection today!I tried to post this pic with my last post and it would not let me.

zoo trip!

Rebecca

We went to the zoo yesterday!We had a nice time..Jaxson slept through most of it although he loved the train ride and was so relaxed on my lap the whole time.After the zoo we went to chucky cheese.Landen did not care about the games he Just wanted Pizza!He was happy and content after 2 big slices to just set and wait for his big teen sisters to spend all the tokens on games.Of course his big sister cashed them in and got him a ball with shrek on it for Landen.Jax slept the whole 2 hrs we were at chucky cheese!I don't know how he slept through it It was so Loud.Had a great time yesterday.I did not get a pic of my Linda she runs from the camera but her boyfriend Robert is in the pic with my Landen.Landen and Jaxson are his buddies.

Its Official!

Today we had court to finalize adoption in our state!He is now legally Jaxson Emmanuel Miller our son forever and always!I dressed him in his traditional African outfit!I bought it when we were in Liberia.I am glad i did he is so Handsome in it.I am so happy its official now and we could not be more THRILLED.

Too Much!

Right now i have a full plate and things have been so out of sorts.I missed 3 very important appointments for Jax.I have been so emotional about things going on i got the days of these appointments messed up.I was able to reschedule 2 of them and waiting to get the third one.I cant afford to miss anymore appointments.I really messed up and will make sure i don't miss anymore.
Jax is growing so fast and i love watching him talk as loud as he can to hear himself.Its so adorable.Landen is sure making leaps and bounds and cracking me up.Rebecca has been horrible sick and is now feeling better and returned to school after 5 days of being Ill.Linda is doing great and loves working with the special needs preschool kids.She talks about them with excitement in her eyes.I have too much going but am praying it slows down soon!

Sorry for my absense

We have a guest staying with us who has kept us plenty busy!Our little guest will be going home this coming weekend.Jax is doing awesome.He is so chubby and he now has a double chin lol.He loves being able to hear and talks as loud as he can to hear himself.Last night i put him to bed and he was talking loudly(no hearing aides in at night) and was giggling.Michael and I said he was having his very own Party in his crib last night lol.
We got his very Important suction machine which is helping allot.He gags and chokes on his own secretions and this machine has helped allot.He starts his bot ox shots this week for his ankle.I am excited about this.We are waiting for a script for more therapy and oral therapy for him.He is doing amazing he don't look like the same child i brought home 5 months ago at all.I love my little man so much.I love caring for him and being his mommy.I love that smile he gives me when he wakes up and i lean in the crib.Sorry i have taken a break from blog Hiatus.I will be adding new pics of my Jax soon.

ER visit last night

Jax has a rough time with his secretions..He chokes on them and then vomits them.This is very bad.Last night it was so bad My husband and I took him to the emergency room fearing he was aspirating.He thank goodness is NOT aspirating.The E.R. told us to call our doc and have him give us a script for a suction Machine.I am waiting on them to call me back.
I called OT at children's mercy also and told them the night braces for Jax are not working.They finally agreed they should have molded and made him some.So now we will have an appointment to get some made that fit right and stay on.The ones he has are way to big and just slide right off.I cant tighten them anymore as it would be to tight and cut circulation off.Oh fun times but at least we are getting some where.
Monday he has his Neurology appointment and we get the results of his EEG and ct scan i am anxious about this.