11 Months!

Today its been 11 Months that we arrived in america with our angel!I cannot believe he has been home 11 months.It seems like he just got here.How time has flown.I love you Jaxson Emmanuel!I am so so happy you are home with us you are our sweet little man and we are so lucky to be your Parents!

CUTE IN ZEBRA PRINT!

I love these diapers...they are cute..not bulky as others i have tried and they work!I put one on for the first time for bed time last night.The diaper was wet but his bed and clothes were DRY!I have decided that we will use cloth full time now!Tired of leaking diapers!Today for instance changed him in disposable...within an hour he was soaked!My aunt was with me and said..You just changed him and he is wet already?Worse of it all he peed on the Nuerologist LOL.I mean soak and wet pee drenched clothes.Best part of all is how darn cute he is LOL.

LIFE WITH A MEDICALLY FRAGILE CHILD!

I know i always try to be upbeat on my blog!This post will be a bit different.Allot of days its difficult at best with Jaxson being full time care.Some days is tougher then others as we get used to all his care needs.I don't regret being his mommy for a simple second at all.But some days it can be overwhelming.He has had his trach for almost 2 months now.Some say we should be used to it by now.Yes we have the care of his trach down but there are days where it is very difficult.Sleep for one...with feeds and medicine schedule and his pulse ox beeping because he moves and it falls off..or the couple of times his heart rate dropped and we needed to readjust him.The turning him as he is not mobile enough to roll himself.All this takes up most of the night.Michael and I try to tag team it but some days we are literally walking zombies.
The other thing is being able to jump in the car and go somewhere..This has been a hard fact we have to do less of.We joke that we need a u haul to go places...This is what we pack to leave the house...Diaper bag,CPR kit bag and extra trach supplies,suction machine,Feed backpack with feed machine and feed supplies.It is allot of work to get out the door with Jaxson.Plus if it is to bitter cold we cant take him out.So leaving the house is very limited.
Michael and I go through spurts of feeling depressed and closed in..Not always but sometimes.I am by far not trying to say Jax is to much for us..Just stating that it can be overwhelming at times.I don't always feel this way just some days.I love Jax and his bright smile and when he looks at us with those beautiful brown eyes.The love i have for him is deep and i am so very blessed to be his mommy!I tell him all the time that GOD made him just for me!
Another hard thing is..Michael and I cant leave Jax to go have a date night!NO ONE in my family or my friends is willing to learn trach care.It scares them !Our insurance will not pay for nursing so its not like we can get a nurse in here to watch him while we go out.We are working on a supplemental insurance that will pay for some nursing care.A night out even just for an hour is what Michael and i need right now.
So in order to get some one on one quality time with my husband!We have coffee together while the kids are sleeping.We are in need of a break!

CLOTH DIAPERS!

Here is the zebra print one i just bought..LOL we love Zebra print he will be styling with his diaper and zebra hearing aides.

Cats meow diaper LOL this one says it all!

I have tried many of them..I bought dappies diapers and they are made very small even though they claimed to be large up to 35 lbs.He hit 22 and they were way to tight..Then i bought Kushies..These are good but very BULKY!I do use them though.Then a mom posted about Justsimply baby diapers.I bought 4 of them and LOVE LOVE them.He does not leak at all with these.They are easy to use and care for and its onesize as they snap to the fit.I just bought 3 more.Not only are they great diapers they are the cutest and softest diapers.I never thought i would like cloth diapering !I love it and i am saving bunches of money and not filling up the landfills with one less child in disposables.

JAX REHAB APPOINTMENT!

This was an incredibly long appointment.Jax got new hand braces he outgrew his other ones.The doc raised his baclofen quite a bit.We will do this slowly over time.He also will start a new medication to help with the dystonic and spasticity end of it.She does not want to start AFO'S just yet.His muscles in his legs are still to stiff and she is afraid it will tear his skin up.So the plan is..April he will get Botox..shortly after his botox he will go for serial casting where they will stretch his muscles and cast in that position.He will go back a week or 2 later and they will remove the cast and do it all over again.Ths will continue until they decide its time to stop casting and move on to AFOS.
He will also be seeing the orthopedic doctor regarding his subflexed hip.His leg has severely been turning in and worsening.He also cries sometimes if he is moved wrong.So he will see the doctor for this as well as for his scoliosis.We have so many docs say YES he has scoliosis and the one today does not think he does.So and xray will be in order to determine if he does or does not have scoliosis.I am praying he does not have it.Jax took all the pulling prodding and blood draw like a pro today.Not one fuss or cry.Waht a big boy he was ..I was so proud that we left docs office and went to Toys r us and he got another sing a majig for being so good!

NOT MUCH HAPPENING!

I am happy to say after all the drama with Insurance Jaxson will be getting his wheelchair very soon!I applied for 2 grants and we were accepted for both so the ramainder of what we owed on the wheelchair is now Piad for.I was stressing this as our income has changed and things are really tight right now.I am hoping once we get nursing in here i can get a part time job to help out.
I have started saving what i can to open a savings account just for equipment and therapy items Jax and Landen can use.Landen could us a lightbox and wow was i shocked when i seen the price of these.He has one at school he uses and he loves it.

Both boys are doing great!Landen is more verbal everyday.Sometimes we have to prompt him and other times he just says things.Like the other day my mom and dad was here and Landen looked at my mom and said..I want to go to mcdonolds and get mcnuggets and icecream.My mom was floored that he told her that all on his own.Tonight at the table we were eating and i said..Landen eat your taco.He looked at me and said you eat your taco LOL.

I am still trying to get him to tell me yes and no on his own.When i ask him something he will says..yes,no .We have a ways to go on this.He did tell me Thankyou all on his own when i handed him something.He is growing up so fast.Landen's nuerologist gave us the grim and said he would never talk and he would never learn.He has Microcephaly and his head will never grow.His head has grown not much but a little.He is learning the stinker can count to 10 and sing his ABCS and is learning his colors and verbalizing more and more.The last time he seen his Nuero he was shocked to hear Landen talk.I cant wait until he finds out Landen is counting and doing his ABCS.He has an pppointment coming up soon.

Jaxson oh my how much he has changed in the almost 11 months he has been home!He is so sweet and has become quite the daddies boy!Jax may not be able to talk to tell us what he wants but he has learned to use his hand well.When he is sleepy he lifts his arm in the direction of his bedroom.He smiles easily and is a happy little man.When on the floor he scoots around on his back.He now has decided that trying to roll is a great idea!He can get up on his side now so not much longer and he will be on his tummy in no time.At this pace he is going to be all over and active in no time.

I am so proud of both the boys and their accomplishments!I have seen them both grow and learn things that amaze me .I know they will continue to thrive and learn.Both boys have taught me so much and i know i will continue to learn from my 2 beautiful little boys.

Birthday Party!

I Love this Birthday stuff!I am so Happy!

Are These really my presents?

His decorations were homemade!Some will be hung in his room..He loves yo gabba gabba.

Jaxson had a nice Birthday party!This Birthday cake took hours to make!My aunt and I made it..The yo gabba gabba characters are made of icing.the cake is HUGE.It may not look that big in the pic but believe me it was and took 4 cake mixes to make it.The one characters arm and 2 legs fell off transporting it to the party and we could not get them back on.

TODAY IS JAXSON'S BIRTHDAY!

I am excited to get to share this Birthday with him and many many more to come.In the past 10 months i have seen so many changes in our little man.When looking at him and holding him it is hard to believe he is 6 yrs old today.He is still tiny for his age and is all baby in our eyes.We are having a big Birthday Party for him tomorrow.I have rented the local City building to have the party as the turn out is alot more than i anticipated.I am thrilled so many are coming together to share his day with him.I will have lots of pictures to share .

JAXSONS PICS!

MANIC MONDAY!

That is how it started today.I was cleaning house and my Vacuum decided it did not want to work.So i worked on it and got the clog of i dont know what out of it and it is working fine now.Then UPS delivers Jaxson's Trach supplies and i was ticked off they sent us the wrong HME'S(humidifying moisture exchange)These ones were for a vent child and they do not stay on.They also sent no saline bullets,no trach cleaning kits and one oxi tip(suppose to be 4 all together).I was mad it would be nice for once if i did not have to call them and argue with them.
We had a horrible leak in our small bathroom.The floor has been soaked and we did not know where it was coming from.My dad came over and found it and him and Michael fixed it.I dont know what happend after it was done.My dad lost his balance and fell in Jaxson's bedroom.We all jump up and run he was on his knees holding his chest which scared me.My dad has a bad heart so first thing i thought was a heart attack.He said his heart was fine but he did hurt his knee from the fall.I hope he is not to sore or in much pain tomorrow.
Tomorrow i am heading to town to finish getting some things for Jaxson's Birthday party this weekend.I am so excited to finally have him with us on his birthday.

SIMPLY ADORABLE!

JAX DOCTOR VISIT!

The pediatrician Jax has is awesome!First off chunky monkey weighed in at 34 lbs today he has gained 2 pounds in 1 month.Jax does not have pnuemonia !I am grateful as we were worried this is what he had.The doc switched his asthma med back to pulmicort its a prevenetive instead of albuteral being it opens up the lungs.He is on amoxocillin for his cold ewy yuck he has going.I also talked to the doctor about the buckets of drool we are having and how he saturates his trach straps and we are doing alot of extra trach changes.So he also gave a script for robinal which should help with the drool.Over all our beautiful boy is doing very well.

LANDEN!

Landen has made progress in leaps and bounds!He only talks when he wants to but it is getting better everyday.I never thought this child of mine would talk.He is and doing it well.Sometimes he will answer us when asked something or sometimes he wont.For Instance..Last saturday we orderd pizza..I asked him you want Pizza for supper?His answer Oh that sounds good LOL.He is so funny and smiley!I have been Blessed so much by being his Mommy.Landen Is learning and went way beyond any of his doctors expectations of goals they had for him.He is smart,funny and full of life.

TRACH TIES!

This should be interesting...Michael has decided he is going to make trach ties for Jax!He has bought the material and the velcro.I cant wait to see if they turn out or not.I was laughing as the material he bought is Zebra print LOL.It will match his hearing aides.I will post a pic when he makes one to show you what they will look like.

DOC CALLED!

I love Jaxson's new Doctor...He was off today so when i called they paged him and he called me himself here at home.I told him what is going on with Jax.He has me giving Jax nebulizer treatments every 4 hrs.He thinks he may have a viral or bacterial infection .If Jax is not better in 24 hrs he said to call and get a appointment with him for Friday.Jax has slept most of the day today so i know my boy is really sick.He cried during his trach change he cries during diaper changed he is down right miserable.
Yesterday he vomited a ton of phlegm...I went to throw the puke clothes in the washer to discover the pipes have froze.So i am using disposable diapers as i have no way to wash his cloth diapers right now.We have water everywhere else just not the wash machine.So be the life of this frigid cold Kansas weather.Its minus 10 tonight and tomorrow will be no warmer.

ROUGH NIGHT

Jaxson had a rough night.His secretions were thick yesterday and i had to use saline bullets to suction him.Last night when i got him into bed his o2 Sat's were dropping.I would put a little saline in and suction which seem to bring them back up.He just had a hard time all night long.This morning wow were they ever thick.He is on the humidifier which is to help with keeping his secretions not so thick.I am sure he is trying to come down sick.The highways are not the best right now i am hoping he will be OK for a day or two until i can get him in to see his pediatrician.Please pray our Jaxson gets better today and is not so crabby and does not struggle today until we can get to the peds office.