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.

Night braces

I don't like them at all!They are bulky and big.His tiny hands try to slide out of them I adjust them like they said where they are snug but not to tight.He fusses when i put them on.We will see how he does with them after a few more days If his hands slide out anymore i will have to call PT and tell them these are not working.I will have to take a pic and post they are the weirdest looking things i have seen.I do hope we see some results using them.

Awesome News!

I am so happy to say.. that Jaxson's hearing aids are 100% paid for through our Insurance.I was stressing how we were going to pay for these.I am so happy God is so good!

5 MONTHS!

Five months ago we arrived on U.S.soil.5 months of loving you and caring for you!I can hardly believe you have been home 5 months today.I love you Jaxson Emmanuel Miller!

BEEN CRAZY HERE!

Linda caught some type of flu.She went to the doctor and he said it has been lasting 7 days.Sunday Landen started feeling really bad and slept all day.When he was up he vomited and refused food.I started feeling awful last night and both Landen and i had the ugly D word.I changed millions of those icky diapers with Landen.I kept him home from school today he still had a touch of diarrhea but over all is better.I was the one miserable all day.I just wanted to crawl in bed and sleep.That was not happening because i was the only one here with the boys.
Tomorrow Jax has a doc appointment.He is suppose to get some shots we will see.I want to ask him about the constant wheezing striding sound Landen has.It is not his asthma its sounds like drainage he is swallowing and making sounds on.I have no idea but hope for an answer tomorrow.After this appointment Landen has his eyes appointment at children's mercy.We are going to have a long day but worth it.
I got to feeling a bit better and needed to get to walmart and get distilled water for Jax and eye patches as his is almost gone.Jax has odd shaped feet and i have had an awful time finding shoes to fit him.I found a pair the cutest little black and white canvas shoes.He wears a 5 but i got a 6 because his foot is so wide they were easier to get on him.I also bought him some new socks sense his foot has grown his are getting to small.I also got him a couple pants outfits..I love garanimal clothes lol.They are cheap and hold up great.I hope to get good news on both the boys appointments tomorrow.

Landen

Landen has came so far.His progress is amazing.The neurologist told me our son would not do this or that and he just wont progress,Boy was he wrong ! My non verbal son is more verbal then ever.He learns a new word everyday.This morning he was eating breakfast and he wanted more.I said what do you want?He said MORE.I am proud of him he is talking more everyday.He is learning signs as well.The only one i am able to get him to do for me is thank you.He was so excited about going to school this week.He got right up dressed took his medicine and happily headed out to the bus that he now calls "the big twinkie".He is so happy and he loves music and dancing.He giggles all the time and is a true joy to be around.He has learned to count to 5..working on getting higher !There is allot of things i did not list about my guy!But i tell you when he came home at 4 1/2 yrs old he was functioning at a 9 month old baby.He could NOT feed himself at all.He did things a 9 month old would do.Now he is happy and thriving and i would not know life without this guy.He has blessed us so much.I just had to share with you all about him because he has came so far.I am very proud of my little pooh bear.

What a day!

Jax had four appointments today at children's.First was eye doc..Jax will have to keep his eye patched for another month and be evaluated again then.They did say glasses are in his future.Next appointment was wheel chair fitting.This appointment was long about 2 plus hours.The wheel chair they ordered will be adjusted for a perfect fit for him.It will have his name JAXSON on it and its cranberry red and black.I am praying insurance will help pay for it.The wheelchair is very expensive.We wont get it for about 3 months.He was weighed today too and is up to 28 lbs 4 oz.He is growing so fast!Next appointment i was so excited about.He received his zebra hearing aids.I was prepared for him to cry..Nope he had a look on his face like what the heck?LOL.He was making all kinds of adorable facial expressions.Last appointment was OT he got his braces that he will wear at night for his wrist.They were fit and he did not seem to mind them.We will do on an hour tonight.Increase every night by and hour until he can handle 8 hrs of them on during sleeping time.The doc also increased his baclofen as well.
She also sent a referral to Pulmonary clinic.They think he may have some sleep apnea.I hope they get this appointment quickly as that stuff is scary.Our babe is doing WONDERFUL.He is such a happy guy and coos all the time.
Please say some prayers for us as our family is going through some things.I cant discuss it yet but we can really use some prayers.

WOW!

Jax was really crabby this morning and he started blood curdling screaming when his daddy was holding him.I came out of the laundry room and said let me try to my wonderful husband.I picked him up and he looked at me and INSTANTLY stopped screaming.He just wanted his mama is all.This made my day.I love this little boy so much.

video of him talking!

I am not good with taking video!I need lots of practice.But he is so cute when he talks and he can get very loud.

I love this picture!

Jaxson

Jaxson in his Tumble form chair!The living room NEVER stays clean with both little ones playing in there.

This and That

Last night was bad for Jax..I don't know what the problem was but he kept us up all night crying off and on.He seems much better today!His chair came in yesterday i promise pics soon.Children's mercy called this morning and we have a Botox therapy appointment scheduled now YEAHH!He gets his first appointment for his shot on September 8Th.I am praying these do what they are suppose to.Next Thursday he see the eye doc,has his fitting for wheel chair and gets his hearing aides.I am hoping for a positive reaction to being able to hear.
Landen is NOT ready for school.Everytime we mention him going to school he says NOOOOOOOOOOO LOL.The kids first day of school is Tuesday the 17Th.
I still have school supplies to get and Rebecca's volley ball shoes to buy.We will finish up tomorrow while we are in town getting Rebecca's Physical done.
Linda is a senior this year.We are late but in a couple weeks we will be looking for a photographer to do her Senior pics.Things are moving along here the kids are keeping me busy.
I am having problems with the teens back sliding on their chores.Mom is going to have to get tougher.All in all we are doing well.Frustrated trying to get a document we need for our agency.I am upset about it as it was due awhile ago arghh!I will keep trying to get it.

EXCITED!

Jax is in need to a tumble form chair!These adaptive chairs are very expensive

.I was told about a yahoo group that you can list what you need and if someone has one they need no more you can purchase it from them.I got an email from a nice lady who said she had one of these chairs.All she asked was for me to pay for shipping.So Jax will have this much needed chair he needs.I am excited about it.

Tomorrow we meet with the school to see what the best options for our Jax will be.Michael and I both feel he is just not ready for school.Maybe in January he will be.I want to see what is available for him and what is in Jax best interest.

Busy day

I am happy to say Jax much needed feed bags arrive fed ex this morning as promised.Michael and dropped our car off at the shop to get all new tires on it.The ones on the car was worn down so bad we were lucky we did not have a blow out.I about flipped on the price of the tires though.Then we headed to town to sign and notarize our motion for adoption petition for Jaxson.That is done and he said we should have court in a couple weeks.
Then we went to walmart for a few groceries and house hold supplies.My husband wanted a desk top so he got one and wow the monitor is HUGE on it.But the kids ant get on it he password protected it for this reason.Tired of them putting viruses on our computers.
Tomorrow i am taking Linda shopping for her school clothes and supplies for school.I also called keystone to see what options we have for Jaxson.I do NOT want him starting school yet he is not ready for that.

FINALLY!

After four phone calls to medical supply company.The bags have been shipped fed ex overnight and will be here by noon tomorrow.I was upset when i called and explained to her what was happening.She was not happy and said they are the same medical supply there was no reason for the run around and she would get to the bottom of it.My husband has been hiding a bag lol.I found it and am using it.I don't like to bolus feed and he don't do it.So the bag will last until supplies come tomorrow.I am hoping we have no MORE problems from here on out.

bolus feed abd other stuff!

I am doing Bolus feeds on Jax.They are not bad to do just time consuming.We are still waiting on our shipment of bags.Who knows when we will get them.I am so frustrated about it all.The good news is we wont have to deal with that medical supply company anymore.
Our oldest Daughter Hannah came to visit last night.We celebrated her Birthday early because she will be in school when her birthday comes.We had pizza from pizza hut and cake and ice cream.She loved her Birthday present.We always love when we get to Hannah as it is few and far between.That's the only thing about our kids growing up we see them less and less.
Today and tomorrow is enrollment for the kids.I cant believe school is so close to starting.I did online shopping and got all Landen's school clothes done.The best part they were on sale and i got 10.00 extra off the order.I took Rebecca shopping last week for her clothes and Linda is going this Saturday.

Irritated

This is not good.Jaxson is out of feeding bags he has NONE.I have had a big problem with the supply company and getting a shipment of bags.Our insurance has switched carriers which threw our order in Limbo.I will have to bolus feed until the bags come in.I am not happy at all.I should not have this kind of problems getting the supplies my son HAS to HAVE.
I called a local medical supply to see if they have any of the bags on hand i could purchase.They do not and i would have to order them.So that is out by the time we got them ours should be here.I am praying they come in tomorrow.
Michael and I really need to work on a better schedule with the feedings.We are both running on no sleep.Either i get the last late night feed and he gets the early morning one or vise versa so we both get some rest.We need to work something out anyway.