We have two issues going on here at home.Yesterday Jaxson's portable suction machine quit working.It turns on and sounds OK but it has no power to suction at all.I called the DME today to trouble shoot and for some reason something went wrong with the canister in it.We don't know what as it is not cracked or anything just wont suck like its suppose to.The weather is awful here(ice) so they cant drive any down.They are sending it UPS so we hope to have it tomorrow.I am grateful we have the stationary one here so that's the one we are using.
The other one..Michael holds Jax so much that now he cries when he is not held.I have warned Michael about this.We all want to hold and love him all the time but it cant be done when i am running around chasing Landen or trying to clean or cook supper.Right now he is actually happily setting in his activity seat.Other then this all is well!I don't have to worry about Jax endocrine appointment they called and cancelled it from Feb 2 to Feb 7Th due to the weather we are getting.We are in for another huge snow storm starting tonight.
Monday, January 31, 2011
Friday, January 28, 2011
A GOOD DAY!
Today was warm 51 degrees so Michael and I took the opportunity to take Jaxson out.We went to town ran some errands went to lunch and then to walmart to get Jaxson's passport photos done.It was a great day jax was in a great mood and full of smile.He was ready to get out of the house bless his tiny heart.While setting in the Resturaunt i get a call from our insurance company.They somehow had the wrong birth date on Jaxson which was kicking back a denial on his wheel chair.Come to find out they had the wrong ID number so it was someone Else's insurance number.This has now been fixed after many attempts to get it fixed.I am not holding my breath as we have had so many problems getting this wheel chair.I have an application ready all i need to do is go the bank and have it notarized and mailed off on Monday.I am praying they can fund the rest of what we need to get our sons wheelchair paid for.
Now we can send off for Jaxson's citizenship as well this week.I am so excited to get this step done.Then its off to get social security done.I found out some things about homeschooling Jax next year.I will discuss this with his pediatrician in March to see if he cant type us up a letter stating he is medically fragile so we can get home bound schooling for him.
Rebecca is giving me some problems !Her dad and i have discussed different ways of disciplining her tonight and hope it works.She is a teenager and problems are abound to rise but boy can she push some buttons.All is well otherwise.Staying home this weekend.They are saying more snow is coming on Monady and Tuesday.I hope not Tuesday Jax has endocrine appointment.
Now we can send off for Jaxson's citizenship as well this week.I am so excited to get this step done.Then its off to get social security done.I found out some things about homeschooling Jax next year.I will discuss this with his pediatrician in March to see if he cant type us up a letter stating he is medically fragile so we can get home bound schooling for him.
Rebecca is giving me some problems !Her dad and i have discussed different ways of disciplining her tonight and hope it works.She is a teenager and problems are abound to rise but boy can she push some buttons.All is well otherwise.Staying home this weekend.They are saying more snow is coming on Monady and Tuesday.I hope not Tuesday Jax has endocrine appointment.
Tuesday, January 25, 2011
OOPS!
Last night we went to do Jaxsons Trach change.I could not find his trach nowhere.I asked Michael where he put it from the last time.He said he would find it when he got out of the tub.We did not find it anywhere i got upset with him.NEVER trust a man who forgets often things to take care and put it where it goes after cleaning and sterilizing it.
So this morning i called ENT to see what to do.We are to change to the smaller trach clean and sterilize the trach we are taking out and then put it back in once done.I then called our DME to get the lost one replaced.It should be here tomorrow.I was upset with Michael about this.I am pretty sure he threw it away.Its nowhere in this house we looked EVERYWHERE.
Jax will get his trach change this evening and I will clean and sterilize the other one so we LOSE no more trachs.This is an important thing we cannot be losing these.
We have had a laid back January with no appointments but we have a ton scheduled in February.It will be busy but worth it.We gave jax a hair cut last night.Ok ladies help me out those who have kids with African hair how do you cut it?He cries every time we cut it as it pulls.I decided to buzz him bald as it hurts him less this way.I really just wanted to do a trim on him.How do you do it without making your child cry?
So this morning i called ENT to see what to do.We are to change to the smaller trach clean and sterilize the trach we are taking out and then put it back in once done.I then called our DME to get the lost one replaced.It should be here tomorrow.I was upset with Michael about this.I am pretty sure he threw it away.Its nowhere in this house we looked EVERYWHERE.
Jax will get his trach change this evening and I will clean and sterilize the other one so we LOSE no more trachs.This is an important thing we cannot be losing these.
We have had a laid back January with no appointments but we have a ton scheduled in February.It will be busy but worth it.We gave jax a hair cut last night.Ok ladies help me out those who have kids with African hair how do you cut it?He cries every time we cut it as it pulls.I decided to buzz him bald as it hurts him less this way.I really just wanted to do a trim on him.How do you do it without making your child cry?
Sunday, January 23, 2011
SAD!
Two beautiful little girls have passed away this month in Liberia due to Malaria.This senseless killer that claims so many children's lives.I am sad to hear about these little girls deaths.Even with trying to keep these kids from catching Malaria this is common in Liberia.Then add that both girls are special needs and their Immune system already being compromised this breaks my heart.These little girls who did not get a chance at love of a family and mommy and daddy to care for them.Sweet babies who are with God now.
I wish the government of Liberia would realize the importance of adoption for all the kids in Liberia.I know from my own experience that we have been blessed with our son.I also know our son was very very sick and would not have survived much longer in Liberia.God had his hands on our son.He knew when the time was right to get him home before he became another fatality.
I am Sad for all the children that wait and hope to have a family.The children who don't get enough to eat at night.Go to sleep with a empty belly and no bed to sleep in.Those kids who don't get the cuddles and I love you's from a mommy and daddy.Those kids who get sick in Africa and get called home way to young.I just keep praying that Liberia will open to adoptions soon and see that adoption is a wonderful thing.That many children come to their families are are happy and healthy.The many parents who adopted these angels who count their blessings everyday to parent these Beautiful amazing children.I Pray for every child in Liberia and Pray for those who went to heaven way to soon.
I wish the government of Liberia would realize the importance of adoption for all the kids in Liberia.I know from my own experience that we have been blessed with our son.I also know our son was very very sick and would not have survived much longer in Liberia.God had his hands on our son.He knew when the time was right to get him home before he became another fatality.
I am Sad for all the children that wait and hope to have a family.The children who don't get enough to eat at night.Go to sleep with a empty belly and no bed to sleep in.Those kids who don't get the cuddles and I love you's from a mommy and daddy.Those kids who get sick in Africa and get called home way to young.I just keep praying that Liberia will open to adoptions soon and see that adoption is a wonderful thing.That many children come to their families are are happy and healthy.The many parents who adopted these angels who count their blessings everyday to parent these Beautiful amazing children.I Pray for every child in Liberia and Pray for those who went to heaven way to soon.
Thursday, January 20, 2011
Not much Happening!
We got allot of snow here yesterday!I was going to get out and go grocery shopping and pick up Jaxson and Landen's medicines.But the weather had different plans.I did get out today and got medicines picked up a few groceries and some items we needed here at the house.My sweet husband stayed home with Jaxson.I offered him to go in my place as he has not left this house sense Jax got out of the hospital.He did not want to and stayed home.The highways were clear so that was no problem.The side streets in our town and the town walmart is in was a different story.Michael and I always say if we can get out of our town then we have it made.
The city blades the streets and they never blade our street because we live on a dead end and i guess they think we don't need our street bladed.They have a new guy that does the blading and he bladed our street i was very thankful for that.Other wise we would have shoveled forever just to get my car out of the driveway.So Landen and I and Linda made our way to town.We got our shopping done and Landen says he is Hungry(hundy) as he says it.So we went to mc donolds so Landen could have his chicken nuggets.
Tomorrow we are staying in and i am working on the laundry that has piled up on me.Sometimes i wonder if i will ever stay caught up.The kids will have school tomorrow it was cancelled today due to the weather.So Michael and I and Jax tomorrow makes for a quiet day.Not much to report it has been quiet here.
The city blades the streets and they never blade our street because we live on a dead end and i guess they think we don't need our street bladed.They have a new guy that does the blading and he bladed our street i was very thankful for that.Other wise we would have shoveled forever just to get my car out of the driveway.So Landen and I and Linda made our way to town.We got our shopping done and Landen says he is Hungry(hundy) as he says it.So we went to mc donolds so Landen could have his chicken nuggets.
Tomorrow we are staying in and i am working on the laundry that has piled up on me.Sometimes i wonder if i will ever stay caught up.The kids will have school tomorrow it was cancelled today due to the weather.So Michael and I and Jax tomorrow makes for a quiet day.Not much to report it has been quiet here.
Tuesday, January 18, 2011
Ground hog day!
That is what it feels like with me right now.Its the same stuff everyday 24 hrs 7 days a week.The weather has big play on whether we can take Jaxson out or not.Well its been the or not its been way to cold to take him out.He requires Michael and I both to care for his trach 3 times a day.So yes Groundhog days so fitting around this house.Although we are starting to feel the huge effect of cabin fever.It is so hard adjusting to Jaxson's new medical needs.Its hard to let go of what he lost getting the trach.I also see the good it has done for him as well.
I am hoping soon we can get a weather change and get out of this house as a family.I am battling getting Jaxson's wheelchair!Every time we think its going to happen and are told it is we get excited.I got half the money we owed paid for and am working on a grant for the other half.We are waiting on our insurance to pay what they owe.I am beyond frustrated.Something that was suppose to be done in 3 months is well into 7 months now.Yes i am irritated.
Michael and i are feeling a bit blue!We are hoping soon we can get out if even just to the grocery store!
I am hoping soon we can get a weather change and get out of this house as a family.I am battling getting Jaxson's wheelchair!Every time we think its going to happen and are told it is we get excited.I got half the money we owed paid for and am working on a grant for the other half.We are waiting on our insurance to pay what they owe.I am beyond frustrated.Something that was suppose to be done in 3 months is well into 7 months now.Yes i am irritated.
Michael and i are feeling a bit blue!We are hoping soon we can get out if even just to the grocery store!
Saturday, January 15, 2011
SORE NECK!
Jaxson's neck is raw and irritated from his trach ties!His drool is so bad and we work hard at keeping his neck clean and dry.We change his dressing several times and we change his trach ties at least twice a day because they are saturated from hs drool.I wash clean and dry his neck everytime.I put a little antibiotic ointment on hope it helps him.I need to ask the doc what i put on if it close to the stoma(front of neck).Right now its just the back and so i am treating it.
there is great advantages to the trach!But there is disadvantages too.I so miss hearing him babble and cry is the biggest ones.
there is great advantages to the trach!But there is disadvantages too.I so miss hearing him babble and cry is the biggest ones.
Thursday, January 13, 2011
HAPPY BOY!
Look at me setting up like a big boy!
I love my Mommies Kisses!
I am so sillly! I have the giggles!
I am so Happy!
I give Great Kisses to my sister!Wednesday, January 12, 2011
CHANGES I HAVE NOTICED!
Now that Jax is feeling better and not struggling to breath i am seeing big changes in him.He smiles allot more,He is more alert,and loves attention and being held.I had him on a blanket on the floor for play time!I had his T.J.beary tale doll on the floor with him reading him a story.Jaxson so badly wanted to get it and touch it.I looked over and he had rolled from his back to his side.This is awesome he has never rolled off his back.I am hoping soon he will roll over onto his belly.He wants to play with toys more he still has not much strength in his hands but he sure tries.He did pick a rattle up and put it in his mouth .This was BIG for him.
I am amazed to see him change so much as the time goes by.He is so sweet and when i cuddle him i feel so blessed that God gave me this amazing little boy who has fought so hard and long to live.He is a fighter and a strong willed little one!With all his medical problems he definitely had God's hand touching him and keeping him safe until his mommy and daddy was able to bring him home and get him the care he needed to save his life!I love Jaxson Emmanuel so much and i am so proud to be this little ones Mommy!I love him so deeply and when i look at him all i think of is how God made him just for me!
I am amazed to see him change so much as the time goes by.He is so sweet and when i cuddle him i feel so blessed that God gave me this amazing little boy who has fought so hard and long to live.He is a fighter and a strong willed little one!With all his medical problems he definitely had God's hand touching him and keeping him safe until his mommy and daddy was able to bring him home and get him the care he needed to save his life!I love Jaxson Emmanuel so much and i am so proud to be this little ones Mommy!I love him so deeply and when i look at him all i think of is how God made him just for me!
Monday, January 10, 2011
CUTENESS!
Jax kept closing an eye when i went to sna his picture!He was waiting so patiently for his big brother to put new batteries in his mobile.
Oh these eyes They just melt my heart!
Sunday, January 9, 2011
FEARS!
I have been a fanatic every sense Jax got the trach!Dust is bad on him so i spend allot more time dusting then i used to do.I vacuum the living room rug several times a day and i vacuum his bedroom allot too.I am scared to take him out of the house.Cold is bad for him and i just get worried he will get sick.I wont let the kids hold him until they wash their hands they are not allowed to touch his trach or the HME Barrel.
I am buying mask if they get sick they will wear mask.I don't mean to be harsh with the kids but their is so much that needs to be done and precautions to take with Jaxson.I also am buying sanitizing hand gel to put throughout our home and we will use that as well.One of us sleep in Jaxson's room at night with him at all times.Last night was my night to do so.Some times i wonder if i will ever sleep in my room again full time.
We are planning for future nursing to come in and to be honest here.I don't know that i want a nurse in here taking care of my child.I have trust issues letting go and letting them do.How do i know she will care for my child?How do i know she will love him?I have a hard time thinking about letting someone invade our lives all the time and putting my child's life in the care of another.Only if its a few hours here and there.I hope my fears get better as time goes on.Right now i am OK with Michael and Myself doing everything but i also see Michael and I needing a break.We cant stay in our home 24 hrs a day 7 days a week.We need time together out to dinner alone or time with our other kids alone.Is it just me or are these fears i have just because of the newness of it all?I worry so much about my son although he is doing 100% better I still worry.
I am buying mask if they get sick they will wear mask.I don't mean to be harsh with the kids but their is so much that needs to be done and precautions to take with Jaxson.I also am buying sanitizing hand gel to put throughout our home and we will use that as well.One of us sleep in Jaxson's room at night with him at all times.Last night was my night to do so.Some times i wonder if i will ever sleep in my room again full time.
We are planning for future nursing to come in and to be honest here.I don't know that i want a nurse in here taking care of my child.I have trust issues letting go and letting them do.How do i know she will care for my child?How do i know she will love him?I have a hard time thinking about letting someone invade our lives all the time and putting my child's life in the care of another.Only if its a few hours here and there.I hope my fears get better as time goes on.Right now i am OK with Michael and Myself doing everything but i also see Michael and I needing a break.We cant stay in our home 24 hrs a day 7 days a week.We need time together out to dinner alone or time with our other kids alone.Is it just me or are these fears i have just because of the newness of it all?I worry so much about my son although he is doing 100% better I still worry.
Friday, January 7, 2011
A GOOD DAY!
Jax has had a great day today.He has been awake allot more today and happy.I got some toys out and started working with him.He does not pick up toys or pickup and hold on his own.I put a rattle in his hand today and he held it forever before i looked over and there he was putting it to his mouth all on his very own.This is a big thing for our Jaxson who has no interest to hold toys.He loves toys and smiles at them.He will Bat at them if above him.I am working on him discovering what they do and its OK to hold and pick up those toys.He also got to watch his all time favorite morning show Yo Gabba gabba!I got asked how i know its his favorite?Well his arms flail and he smiles and you can not revert his eyes from anything else during that 30 minutes.
After all the trouble we had finally Jaxson's trach supplies showed up this morning and they were all the right items.This was a big stress and now no worries.We should have no more problems getting his supplies now.
Landen did not go to school today!He absolutely refused to go so he stayed home and got some mom and dad time.He is so funny and so smart.He has played allot today and has been the happy boy he is.I am tired as i am up and down all night when Jax machine beeps.
The temp has dropped here and its going to be a cold weekend.We cant take Jax out when its this cold so looks like we are hibernating this weekend.
After all the trouble we had finally Jaxson's trach supplies showed up this morning and they were all the right items.This was a big stress and now no worries.We should have no more problems getting his supplies now.
Landen did not go to school today!He absolutely refused to go so he stayed home and got some mom and dad time.He is so funny and so smart.He has played allot today and has been the happy boy he is.I am tired as i am up and down all night when Jax machine beeps.
The temp has dropped here and its going to be a cold weekend.We cant take Jax out when its this cold so looks like we are hibernating this weekend.
Wednesday, January 5, 2011
Tuesday, January 4, 2011
BACK TO SCHOOL!
Today was the kids first day back to school.Landen got right up and dressed He acted excited to be back in the swing of school.I was not i missed most of his holiday vacation with him and just felt our time was to short together.I missed his giggles and shenanigans i just missed my little boy.He came in the door and i said how was school?He said it was fine lol.Usually he says OK.
The house was so quiet with just Michael and I and baby Jax.We have no appointments for the rest of the week .Matter of fact i don't think we have any next week either.
Still waiting on Jaxsons supplies to arrive he is out of noses.They said they would be here tomorrow or i hope.Michael and I did his first trach change here at home today and it went really smooth.I don't know what i was expecting but i am happy it went so well.I do worry he is coming down with a cold.Now mind you he was not sick until he got his shots which i find odd.He gets his shots and an hour later his nose starts running and is still running all day today.
The grant application to get help paying for wheel chair was mailed a couple days ago i hope to hear good news on that.Otherwise i don't know what we will do we just do not have the 1,400 needed left to be paid.I should hear something soon and hope to hear the wheelchair will be delivered soon its been a long wait for his wheelchair.
We cannot get any nursing for Jax !Our insurance will not cover it so this puts me on hold of getting a job.We will survive we always do.Michael is a great help with all the care of Jax and caring for Landen.Its nice to have both of us on deck at all times with our sweet boys!
The house was so quiet with just Michael and I and baby Jax.We have no appointments for the rest of the week .Matter of fact i don't think we have any next week either.
Still waiting on Jaxsons supplies to arrive he is out of noses.They said they would be here tomorrow or i hope.Michael and I did his first trach change here at home today and it went really smooth.I don't know what i was expecting but i am happy it went so well.I do worry he is coming down with a cold.Now mind you he was not sick until he got his shots which i find odd.He gets his shots and an hour later his nose starts running and is still running all day today.
The grant application to get help paying for wheel chair was mailed a couple days ago i hope to hear good news on that.Otherwise i don't know what we will do we just do not have the 1,400 needed left to be paid.I should hear something soon and hope to hear the wheelchair will be delivered soon its been a long wait for his wheelchair.
We cannot get any nursing for Jax !Our insurance will not cover it so this puts me on hold of getting a job.We will survive we always do.Michael is a great help with all the care of Jax and caring for Landen.Its nice to have both of us on deck at all times with our sweet boys!
Monday, January 3, 2011
JAXSON'S NEW PEDIATRICIAN!
Jax had an appointment today with his new doctor at children's mercy.They started a program for medically complex children so i feel better with Jax being seen by this doc.He gave Jax some immunizations today.Jax has gained 1 lb now that he got the trach he is not vomiting at all anymore so they think lack of oxygen is what was causing him to vomit.
We can not get nursing care as our insurance will not pay for it.I am so bummed as i really need to get a job.Money is tight right now.We have not received his Trach supplies so the doctors office was working on it.I don't know what to do we are running out of things fast.He is out of noses and trach pants.We are using his gtube pads(bigger trach pants) for his trach.I pray his supplies come quickly.
Tomorrow is another day of gathering paperwork for all 3 of my kids.We are getting their citizenship done.I will be so happy when its all sent and we get their lovely citizenship in the mail.We finally got the Christmas tree down and the decorations put away.
The kids go back to school tomorrow so it will be so quiet with Jax and I and Michael here tomorrow.I think they are ready to go back.
We can not get nursing care as our insurance will not pay for it.I am so bummed as i really need to get a job.Money is tight right now.We have not received his Trach supplies so the doctors office was working on it.I don't know what to do we are running out of things fast.He is out of noses and trach pants.We are using his gtube pads(bigger trach pants) for his trach.I pray his supplies come quickly.
Tomorrow is another day of gathering paperwork for all 3 of my kids.We are getting their citizenship done.I will be so happy when its all sent and we get their lovely citizenship in the mail.We finally got the Christmas tree down and the decorations put away.
The kids go back to school tomorrow so it will be so quiet with Jax and I and Michael here tomorrow.I think they are ready to go back.
Sunday, January 2, 2011
BETTER!
Things are getting better with each passing day with Jaxson's care!We change his trach pants and clean the trach area at least 3 times a day.Jax drools so much that he saturates his trach pants.I cant put a bib on him because of trach he needs the over the head ones.We have 3 of those.I need to order some online i guess.The burp clothes help but nothing is fool proof.So to keep his stoma clean and dry we do it 3 times.
We got all his equipment in his room.The first 2 nights he was in our room.I bought a plastic tool box that looks like a dresser and holds the equipment on top and the supplies fit in the drawers.His room now looks like a hospital .It is going to take some time to get used too.
I will be honest i am still overwhelmed with all of this.I slept in his room last night as i am not comfortable being in our room away from him.I do have a baby monitor but still i sleep heavy and i need to be close to here if his SAT monitor beeps.
He does feel so much better though and he smiles more.He moves around allot more and does not sleep as much as he did.These are all great things so overall he is Better.Michael and I both know we will have his care down it just takes time adjusting and learning.We are getting there.Tomorrow is the biggie we change his trach out.
We got all his equipment in his room.The first 2 nights he was in our room.I bought a plastic tool box that looks like a dresser and holds the equipment on top and the supplies fit in the drawers.His room now looks like a hospital .It is going to take some time to get used too.
I will be honest i am still overwhelmed with all of this.I slept in his room last night as i am not comfortable being in our room away from him.I do have a baby monitor but still i sleep heavy and i need to be close to here if his SAT monitor beeps.
He does feel so much better though and he smiles more.He moves around allot more and does not sleep as much as he did.These are all great things so overall he is Better.Michael and I both know we will have his care down it just takes time adjusting and learning.We are getting there.Tomorrow is the biggie we change his trach out.
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