Not so good news!

The Ent appointment was a little much much for me and i almost had a meltdown in the office.Jaxson has to have surgery on august 23rd to remove another scar on his trach stoma.It is hard to change the trach and we are having to go in at a side angle(not good).Tha bad news is if he keeps forming scars he will not get his trach out for a long time to come.I am so upset for Jax and Myself about this.We finally convinced the doctor to look at his adenoids whil in surgery and remove them if need(we know he needs them out AGAIN).We also went to Hanger to get his new handsplints i was irritated there.They goofed up and only orderd One!He is suppose to have 2..Insurance paid for 2 but we got one.So another 6 week wait before we get his left hand splint.Today was filled with me getting frustrated and sad for my son as things did not go as planned.Pray Jaxson gets no more key loid scars in the future so we can decann.I will Be so happy when my son is trach free.

Lucky Number 3!

That is how many children's mercy appointments we have tomorrow!First we meet with a medical supply company that deals with kiddos!They are called Cherub(i love the name)I am hoping they are way better then the medical supply company we have now.Then we go to Hanger to pick up Jaxson's new splints!Then its off to ENT Jax has a keyloid growing right on his trach stoma.It has gotten bigger and making it harder to do trach change!Other then all of this..My sweet boy is doing well.He is so happy and sweet he gives the best kisses ever!

AMAZING RESULTS!

Jaxson had his rehab appointment last week!The rehab doctor increased his baclofen and we are seeing awesome results!His legs are not like pretzels anymore.He is much easier to change his diaper and dress now.He is also KICKING his legs something my sweet heart was never able to do.His arms are still stiff but there is a little result there too.He has only been on the increase a week so a couple more and we may have even better results.If this works he will not need the pump and we can move passed it and go on to orthopedic and work on his ankle and hip repair.I am so excite for Jaxson.He is happy and not hurting or irritable as he was.Jaxson is learning at a speed right now.He is cognitivley learning how to turn toys on and off not with his hands but with his mouth(yup i wash his toys with lysol wipes everyday).He is so much fun and such a joy.He giggles all the time Oh how i love to hear him giggle with delight!I love this happy little one.Hard to believe the changes he has made in just 2 Years.My boy is simply amazing and i am so so proud of him.

Classes!

Michael and i have embarked on our journey to foster/adopt!We will be starting classes soon and are praying for a quick process and a fast placement.I am so excited about this journey.We have requested a medically fragile child.Jaxson has been such a joy to us that this is what we feel God has lead us too!We are fixing things in our home we know will need to be done before we can bring a child into our home.I am so excited and am praying everything runs fast and smooth.

Busy!

This week is very busy!I have a doctors appointment tomorrow..my knee starting locking up last week then got to where i could not stand on it at all.I went to the er it got so bad.They told me meniscus is torn or my acl they are not sure which.So i go to my doc and he will refer me to an orthopedic doctor.Michael and my son are going to St.Joe tomorrow to get supplies to build the ramp on the front of the house for Jaxsons wheelchair.This has been a long time coming.Thursday Jaxson has rehab appointment at cmh .This weekend is all the fun festivities for Amelia Earheart  weekened. Sunday we go to a birthday /going away party for our son in law Anthony he leaves for school as he has joined the army!

RUN AROUND!

Jaxson has always vomitted and it increasingly gotten worse.I have complained to several doctors and all they do is check his fundo to see if its intact and then send him merrily on his way.I am certain he has acid reflux!He will swallow lots of his secretions and then he vomits.I am talking everything he eats come back up.Sometimes its twice in a day.always at night or first morning feeding.I am tired and frustrated.His doc just emailed and wants another xray of his Fundo  Has had it xrayed more times then i can count.This is crazy just give my child zantac.It is scary for Jaxson to be vomitting as he aspirates so easily.Jax has an appointment with rehab..Hopefully we can move to the pump.He really needs his ankle fixed and his hip.Orthopedics will not do it until he gets pump.Which means my child cannot stand up at all or even set right because he is in pain with his hip.I am frustarted with all the docs.Guess its time for this mommy to get mad and pushy!

GOD KNOWS!

.Michael and i have been fundraising and pulling  money in every direction to adopt.A little girl sets in Liberia and waits for us but we just cant seem to raise enough money to bring her home.I am saddened by the thought of her staying there.She is so beautiful and could go so far with medical care.We have discussed adopting domestic but that also fell through.My heart aches as i watch people bringing their children home but yet we struggle in every direction.God knows he has a plan for us!I beleive we will bring our child home.My heart breaks as i wait for Gods direction and his will to be done!

PLAY BALL!

LONG TIME!

It has been a long time that i have blogged!I just have not been in the mood for the blog world!Hardly anyone reads it anyway so i just decided to take a break from it.Jax has came a long ways.We seen the Ent not to long ago!The Ent has decided its time to prepare Jax for getting his trach out premanently.I am thrilled about it.Jax now has whats called a passi mur.this device goes over the trach making him breath in the through the trach and out through his mouth.He can also talk again when he has it on.Right now he wears it for 30 minutes off and on throughout the day!He also gets his smell and taste back when wearing it.The benefits of this are amazing and we are enjoying hearing his Beautiful voice!This week we see rehab in hopes to get the baclofen pump.Jaxson has been taking oral baclofen with very little results.He is still really stiff.So we hope the pump works for him.He will need hip and ankle surgery and it cannot be done for 6 months after he gets the pump.His ankle is dislocated and been for a long long time.Our goal is to get him standing and hopefully walking.Jax is getting so so big weighing over 40 lbs now and so hard to pick up.I also want to see if Dr.Roge(Rehad doctor)can get a referel for therapies.He needs speech.ocuapational and physical therapy!I work with him but am needing new ideas as Jax is mastering what i was taught to do and its time to step it up.I am only working one job now and am stress free in that area. Landen has learned alott..His talking skills are comming along great.He is getting better with letting others touch him and him touching others.We are still working on self dressing.It is going very slow!This summer has been so hot and we have not been able to do much with 100 degree temps.We so badly want to take the kids to the zoo and worlds of fun but need a day where its not so darn hot.