Monday, March 31, 2008
It was a long drawn out morning with lots of crying and yelling.
I doubt anyone wants to read all the details of how I had to get ugly.
But if you do want more details you can keep reading.
I'm updating this as things happen.
The battle started a little after 9am.
I've talked rationally, I've cried, I've yelled. I have a headache now.
I've done all I can do and I've talked to everyone that I can, now it is up to each person that I have talked with to submit the right papers and forms with the correct wording explaining why Elijah needs this certain pump.
Elijah's case worker really hurt the case by calling the DME company and spouting off how Medicaid's not going to pay. Then I talked to her and she doesn't even have a contact number for Medicaid. No one from Medicaid told her that, she just wanted to spout off. I told her I want the name and number of the person who told her they wouldn't pay and she can't give me anyone. I called her supervisor about it too and told her to assign us a new case manager now because this one won't be coming back to my house. I'm not normally this ugly acting, but I need someone to help us not hurt us.
I know this will be a long drawn out process. Everything through medicaid is.
Anyway please pray we get this taken care of ASAP. One man told me today that it could take him 25 days to get an answer from medicaid.
I think if I could get the message of "we need a nurse until we get this pump" to the right person things could be sped up.
I talked with a man from the Zevex company and he said Medicaid pays for the Zevex Infinity pump everyday.
He gave me the name of some other DME companies that have this pump on the shelf and has gotten Medicaid to pay for them for patients.
So I called the office manager of the DME company we are trying to go through and told him we should probably go through a different company. Told him what I had learned. He said he was going to make some phone calls and call me back.
Now I don't know if the DME or Medicaid is the problem....probably both.
The Enteral department of the DME just told me they are going to over night a pump to our town tomorrow and someone will deliver it to us.
Thank you Jesus for knowing Elijah's needs and providing!!!
The DME office manager just called me back, LOL, he didn't know the Enteral department had already talked to me so he goes on telling me it looks like we'll have to keep the pump we have.
Medicaid's not going to approve it no matter what DME we go through.
I told him I've been told the new pump will be here tomorrow.
He said okay, he didn't know there was a change and we hung up.
He called me right back and said Medicaid isn't going to pay for the waist pack. I told him I believe medicaid would rather pay for a $100 waist pack then to pay for daily nursing care, but it's their choice which one they want to pay for. He said he'd see what he could do.
You know I'm just a home school mom, what do I know, but paying for the waist pack seems so much cheaper to me.
Then the nurse from Elijah's doctor's office called me back (I had left her a message this morning). I told her I think I have it settled now, but filled her in on everything that happened.
She said she'd write that script for nursing care if I need it to help speed things up.
I hope it is all taken care of now.
Please keep praying until we have the Infinity pump here at our home hooked up to Elijah feeding him formula. And a waist pack so he can hook up and be on the go!
OH and we haven't gotten that shipment of formula yet that we were to receive today.
It's coming UPS so there's no way of knowing when to expect it, but it is to come today.
Elijah is out of formula waiting on it to arrive.
Thank you for all the prayers over the pump problems.
Our God is a Mighty God and there is nothing he can't do.
Saturday, March 29, 2008
This is the pump we really want. It is smaller then the pump above and will fit in a backpack or a waist pack. This pump is the new and improved pump by Zevex and has less alarms and such. Kids can truly be active with this pump. I'm told they can hang upside down on monkey bars and this pump will still work.
This is like the backpack either pump can fit in. These backpacks are special made with places to attach the bag of formula and a place that holds the pump. Can you believe they charge over $100 for these backpacks? We would be happy to get a new backpack, although Elijah does not want red.
This is the waist pack that Elijah really wants. He is at the age where he is embarrassed about his pump and doesn't want other kids to see it. If he had the waist pack maybe his shirt could cover up the pack. He would be so thrilled if they approved to pay for this, but again these are even over $100. We would actually like to get a backpack and a waist pack to be able to change up, but we'll be doing great to just get one.
Our prayer request are;
1. Formula and supplies will arrive Monday. I can figure out the new packages and how much more formula he will need to last a month and they approve the new figure.
2. Medicaid will approve the Infinity pump, waist pack and backpack or at least the pump and waist pack.
3. If they won't approve the Infinity pump, we need them to at least approve with EnteraLite pump. Elijah needs to be mobile!
Thanks you so much for joining us in prayer for these needs to be met. God has been so good to us and I know he can handle these needs.
Here is what the Zevex company has to say about the Infinity pump. Doesn't this sound great for an 8 year old active boy!
Small, highly accurate and truly portable, the EnteraLite Infinity allows tube fed patients the ability to participate in physical activity, without being held back by their feeding pumps.
Surpassing all other enteral pumps, the EnteraLite Infinity provides active freedom. Use of an enteral feeding pump no longer needs to be a major limitation to the user’s daily schedule.
Designed for both hospital and alternate care use the EnteraLite Infinity’s size, weight, accuracy, and portability promote and support physical activity. Enteral nutrition consumers can now gain the benefits from health-improving physical activity by utilizing new technology that supports active freedom.
Saturday, March 22, 2008
We taped eggs in the trees and threw out thousands of eggs in the field.
This is the only picture I took that turned out at all. The rest were blurry or black.
Here are some of the kids that were here for the egg hunt. I couldn't get everyone together for a big group picture.
The teens played a few games and had pizza before the egg hunt. Then they all took off to the field to find eggs. After the egg hunt the water balloon fight was on! I think everyone had a good time.
Today I took my kids out in the field and took some Easter pictures of them.
Monday, March 17, 2008
Sunday, March 16, 2008
Elijah is so much better and I do believe he is over whatever it was that hung on for so long.
We each took our cameras to get some shots of our day. We all enjoy photography in some kind of way. Jody likes to take pictures of birds and nature. Dakota likes to take pictures of objects, nature, landscapes and buildings. I like to take pictures of my kids or people. And Elijah takes pictures of anything. It's interesting to see his pictures because you never know what he thought of to take a picture of.
So today the kids took pictures and I took pictures of the kids taking pictures.
Dakota taking pictures.
This is across the street from the court house on the board walk along the river.
This is the river to my right showing the Lee Joyner bridge and the train bridge.
This is the river to my left showing I-20.
Can you see the kids? I kept these pictures small so they wouldn't take so much time to load and I can barely see Dakota's green shirt up on the board walk.
In the picture below, see the house on top of building? I have always wanted to go up and go in that house. At one time the house was yellow and then it was pink. As I would cross the river on I-20 the pink house would always catch my eye.
Just for kicks I just googled to see if I could find out any info about this building or the house and I found this on a property website.
One such unusual property is the old Penn Hotel in Monroe‚ currently under renovation. The former hotel is noted for the little pink house that sits near the top of the 10-story building.
“The hotel dates back to 1928 and I plan to renovate it with luxury condos on each floor‚” says building owner Melody Olson. “The bottom floor will be commercial and retail‚ while the remaining floors will be residential. It’s a big job.”
And the top portion of the building that features the odd little pink house – what will become of it?
“I’ll keep it because people enjoy it as a landmark around here‚ but I’m going to paint it a stone color simply because pink just won’t fit it with the new color scheme of the renovated building‚” Olson says. “I actually plan to live on the ninth floor of this building once the entire renovation is complete. I can’t wait.”
We had a lovely day. Dakota and I decided it would be fun to go out on Sunday evenings and take pictures of different places in our area. So that's our plan.
Friday, March 14, 2008
I'm so glad he is feeling better. He feels better and he has hardly coughed today. Praise God he feels better today. He did have a day like this last week and then turned back around the next day, but I pray this is the end of long days of being sick.
So we go to the appointment and I'm telling the doctor about Elijah's cough, how bad it is and how bad he feels and he's looking at Elijah sitting there not coughing and looking great and probably wondering what's wrong with me. Oh well, at least Elijah's feeling better.
He did send him for a cat scan and put him on Allegra. I called our regular doctor and asked her about the Allegra because Elijah just doesn't do well with meds and we decided to go ahead and try him on it. She said she thought about putting Elijah on it when she put Dakota on it 2 weeks ago, but decided to see if anything else helped first.
It's been great having my little boy back today that feels like playing and he's not coughing every breath so he can talk. He talks a lot, but I know I'd rather listen to him talk than to that horrible cough. When we got home from the doctor I let him take just a few minutes to collect some rolly pollies from outside and he has them in the playroom building houses for them with his Legos.
Thank you all so much for your prayers!!!
Thursday, March 13, 2008
Wednesday, March 12, 2008
Dr. McCormick wanted him to see a pediatric pulmonologist. The closest we have is Shreveport. I told her we would go to the moon at this point, but he can't get in for at least 6 weeks. He can not wait that long. So Pam (Dr. M's nurse) made Elijah an appointment with Dr. Zambie here in town for Friday morning. I'm looking forward to the appointment.
Elijah has saw Dr. Zambi a few times before. I remember him being a listening doctor and he does have some knowledge of EOS disease. It will be nice to have some fresh eyes take a look at Elijah.
Thanks for your prayers. We are so ready for Elijah to be well again.
He has had to miss co-op and his college class since the first of Feb.
I can't help but wonder what would happen to a child in public school if they missed this much school. Most moms work now days so what would other moms do if their child was this sick for so long and they had to go to work. I obviously don't work so this isn't really a concern, but we have had to put our lives on hold and things are really out of whack. I did make a commitment to teach co-op classes, I know everyone understands, but I still hate to miss and not be there for my commitment.
I'd appreciate some prayer also, this really gets to me at times when he is so sick and I can't do anything for him. I end up crying half the night because my heart hurts so bad.
Thanks for your prayers.
Friday, March 7, 2008
Yes, this is a VERY rare thing.
Here is a funny about the snow. Our homeschool group's SCI/SS Fair is today and one of the student's project is about why it doesn't snow in Louisiana. The Fair is today and it's snowing!
He did pretty good on Wednesday and was well Thursday morning, then as we were getting discharged he started up that awful hacking again. He coughed and coughed all last night and this morning he is still coughing. It sounds horrible.
On the way home from the hospital we had to stop by Target to pick up his steroid as he needs to wean off that now.
After we got home and settled I went and laid down on my bed, oh that bed never felt better. I fell asleep and slept 4 hours.
I have to tell you all that I have the World's Greatest Kid! Dakota cleaned house really good and even made my bed and cleaned Elijah's room before we came home. He also made me a pitcher of tea!
I missed Dakota so much. This is the longest I have ever been away from him.
He said as boring as we are, it's even more boring when we are all gone.
We are so glad to be home, but I hate that Elijah is still sick. I just don't understand why all these steroids he has been on hasn't gotten the cough under control. Please pray for this cough.
Elijah does feel better, but he still can't go anywhere. I know we would get some awful looks taking a child out that sounds the way he does.
All this coughing just wears Elijah out and makes him so tired. Bless his little heart. I wish I could do something for him.
His mask came in and he likes it okay. I told him he looked like a motorcycle dude with it on.
Thursday, March 6, 2008
He has lost a good bit of weight while being sick over the last month, last night Jody came into the room and was shocked at how puffed up Elijah's face is. It's the steroids. His face is round and fat, but his arms are so skinny. Looks kind of weird.
He had an upper GI run this morning, his doctor is waiting on results from that. I feel it will be fine and she'll be sending us home today.
Wednesday, March 5, 2008
Then Jody's SIL, Tammie, was admitted after having a stress test today.
Please pray for Tammie, I'm worried about her.
She plans to set up an upper GI test for Elijah today, but wants to talk to his GI doctor first.
So we sit and he's not able to have any formula, rice or apple until he has the test done. It could be late evening before he has the test done. Read that as a LONG DAY with Elijah asking for something to eat.
If the test shows his reflux is out of control even with taking 30mg of Prevacid a day she wants to do the Nissan surgery. I don't feel the problem is his reflux and I'm not for the Nissan surgery.
If the test does not show anything she will send him to a Pulmonary doctor to see what he has to say.
Our biggest fear is that his eosinophilic disease is out of control and his esophagus is flamed or even invaded with eosinophils.
Elijah has been on antibiotics and steroids for a month now and they have not helped at all so we just don't know what is going on with him.
But no matter what happens his doctor wants us to head to Ohio to see Elijah's GI doctor.
We are not prepared to make a trip like that at this time.
Jody and I will have to talk about that tonight.
Please pray for us as we figure out what's going on with Elijah.
Monday, March 3, 2008
My heart just breaks for Elijah. Tonight he had such horrible coughing fits and we could not do anything for him. He just can not get over this.
His nurse tonight was one of our homeschool moms in co-op and she also felt bad for him.
Please pray for Elijah to get well SOON!!!
It's okay, we do school during the summer when it's too hot to do anything else and besides both my kids are smarter than me anyway.
My kids have gotten a lot of classes at co-op this year.Dakota has gotten US Gov, Biology, Financial Peace, Act Prep, Photography, Dynamic Memory, Algebra I, Physical Science experiments and You Decide (a court case class).
Elijah has gotten All About Ponds, Famous Friends - Inventors, Science Centers, Math, 50 States, Geography, Engineers, Making Books, Water color painting, History, Creation and Sight words.
All that counts for a lot of schooling this year.
The boys really enjoy co-op and Jody and I enjoy teaching classes at co-op. Co-op will be over April 21.
I do have a lot of fun school plans floating around in my head for when we do start back with school.
We'll probably do a few weeks of school then take off for the spring and start back up in the heat of the summer.
They both went to the doctor on Tuesday, Feb. 5. Elijah went back to the doctor on Saturday, Feb. 9 and ended up in the hospital with the flu for 5 days. The next week both boys went back to the doctor on Wednesday, Feb. 20 (that happened to be Dakota's birthday). Dakota seemed to get better, but not Elijah. The next week Elijah went to the doctor on Tuesday. By Wednesday night Dakota was seemed to be worse where I thought he was better. Thursday they were both pretty sick so Friday morning I took them both in. Dakota got prescriptions (3 + 2 he already had) and Elijah got admission papers for the hospital. And now it's March.
I took Dakota to Target to get his scripts filled, then home and I packed a few things and then headed to the hospital with Elijah.
We missed the whole month of February.Poor Dakota's 16th birthday was spent at the doctor's office and then off to get Elijah's chest x-rayed.
He said it was so much fun we should plan to do it again next year!
I did give him some money and left Elijah at home with Jody and took Dakota to the mall for a quick shopping spree. He bought several things he wanted then we went to IHOP for a birthday dinner. Jody took him to the movies on Friday and they went off to play golf the next week.I'm sure the golf trip is what made him sick again, but maybe his birthday was saved by getting to do a few special things.
Elijah has Eosinophilic Gastroenteritis, he was diagnosed at 4-5 months old. He has lived on Neocate formula with no foods most of his life. Last year we were finally able to add rice and apple into his diet, so now he has rice, apple and Neocate formula.
Food makes Elijah sick.
I'm not really sure the rice and apple are great for him, but he is the least sick on them then anything else.
He takes his formula through a feeding tube into his stomach. He has a little button on his stomach, we open it and plug him up.
Elijah has good days and bad days. Some days he wakes up and just wants to lay on the couch most of the day. He may lay around a few hours before he feels like doing anything. His stomach is often bloated and hurting. He switches back and forth from being constipated and then having diarrhea all day long. I never know what the day will be like until Elijah wakes up.
We do try to continue on with life and help Elijah have a normal as possible childhood.
It is times like this that reminds us how medically fragile Elijah is though.
Unlike other children who may get colds and such, Elijah can not take over the counter feel good meds like you'd buy at Wal-Mart or Target. Elijah can't even take Tylenol for fever.
Matter of fact Elijah can't take most prescribed meds either. He has reacted to so many meds that his doctor is very careful with what she gives him. He reacts to anything through the gut.
We know he can take rocephin shots or through the vein so that is what we stick with.
Right now in the hospital he is getting Rocephin and steroids through an IV. He is also on breathing treatments.
Elijah has been attending two different homeschool co-ops, at this moment I don't know if he is going to be able to attend the rest of the semester. We sure don't want him to get sick again once he is better.
I just ordered him the cool mask with flames on it as pictured above to wear out in public, but he doesn't seem to happy about having to wear it.
Elijah is doing better tonight. Dakota is still sick at home and I hope he gets well soon. I'd hate for Elijah to get home and get sick again from Dakota.
So the month of February came and went, we missed it.
My wonderful husband, who takes such good care of me, is Jody. I couldn't ask for a better husband. I think he deserves a better wife.
Jody enjoys working weekends at a drug rehab center. We are very fortunate to have Jody home with us during the week.
We have two awesome sons. Dakota is 16. he is into computers and stuff I don't understand.
He has his drivers permit and will be getting his licenses soon. You can take that as your warning to stay off I-20.
Elijah is 8 and he just loves to have fun. Legos and Bionicles make life grand.
We are members of New Light Baptist Church. I grew up Assembly of God and Jody grew up Pentecost. Some how we ended up at a New Light when Dakota was 2 and we became Baptist.
We began homeschooling in 1996 and joined our local home school group in 1997 and have been members since. We enjoy homeschooling and can't imagine life any other way. We have a great homeschool group and a lot of homeschool families.
In 2006 our homeschool group started a co-op, we did not join at that time, but did in 2007.
We love co-op. We attend a Monday co-op and a Thursday co-op.
Jody is able to attend the Thursday co-op with us.
We do just about everything together as a family.
As I sit here at the hospital bored out of my mind I decided to start up a blog again. so this is the day I jump into the blogging world.
I'm going to copy and paste my entries from the old blog to this one. I'm sure I'll have to get my 16 year old son to help me get this going. Dakota is the computer guru in our family.
I think I want my blog red, white and blue because those are the colors of our school room.
I'm a BLOGGER!!!
Sunday Jody and I could tell Elijah was getting sick, we hoped to be wrong.
I was up most of the night with him and at 5 Jody put him in the bed with me.
He has a painful sore throat, coughing his head off and a runny nose that is now bleeding. He has been running a temp of 100. something all day. I think the highest was 100.7. So not to bad, just enough to make him feel awful.
If anyone reads my blog, please pray my baby gets over this quickly. He can't take over the counter comfort drugs.
Elijah often ends up in the hospital when he gets sick. I want to avoid that if at all possible.
I have been excited about our new school year. Dakota and I have been busy cleaning and organizing our school room. We had gotten so much done, but all that came to a halt because he got bit by a copperhead snake in our front yard.
He spent a few days in the hospital getting anti venom. After we came home he started getting an infection in the leg, but he is on antibiotics now and we believe he will have a full recovery.
Elijah had his first day of second grade yesterday. We bought a tiny turtle and set up his home. We also brought in some frogs he caught in the yard and fixed them a nice wet home. He is all into frogs, turtles and fish right now.
I'm looking forward to this school year!
Dakota got most of his work done before we left for the college and took history with him. Elijah is in the speech clinic at the college. He goes twice a week and he is really loving it.
We ran through Target to pick up Jody's prescriptions on the way home and I found some really cute reading glasses in the dollar section. I got 5 pair!
Finsihed up school when we got home and got some house work done and dinner cooked. Then we took off for the library and choir.
After choir we drug ourselves through Wal-Mart and bought groceries and didn't get home until after 9.
It has been a long day!!! I'm so ready for bed, but I still have to put groceries away and make formula. Shoot everyone still has to get baths around here. I'll be up at least another hour.
I took some pictures throughout the day. The pictures did not post in the order they were taken. I haven't figured all that out just yet. I'm still new at this.
Elijah is sight word fishing. He loves playing this. When he catches a fish he has to read the word.
Elijah is doing leaf rubbings for his creation book.
I'd say we had a pretty good day of school! I hope the rest of the week goes this well.
He is so excited about scouts and going camping at Mom & Me.
I ended up being the Tiger group leader. I've been planning some activities for meetings. I think we will have a lot of fun!
Jody's 38th birthday is coming up next week, so we threw him a little party yesterday. ONLY we planned a 40th birthday. It was too funny. We hung up 40 signs and made
We decorated with smiley faces and yellow and black streamers.
It was a nice evening of sitting around a fire with hot dogs and roating marshmellows.
The best part was the gag gifts. Too funny!
With 4 and 1/2 weeks of school behind us now we are taking a week off. Daddy is off on vacation this week. Our van is in no shape to leave town so we are hanging out here enjoying home town. I hope we get to do a few things this week.
Today Jody and Elijah went dove hunting. Dakota and I stayed home and piddled doing nothing of importance.
Both of the boys had some spending money so we printed out 40% off coupons for Hobby Lobby and headed to town. Elijah got a snap circuit set. He loves it. He has already did an alarm, made a light bulb come on, and some motor thingy with a spinning thing on top. It is so easy for him to use. Dakota got an eseal and a big canvas. I don't know what he is going to paint, but I can't wait to see it.
This evening we went out to eat with my mom, Cody and Amber. Then we went back to Mom's to hang out and visit.
It was a nice first day of vacation
Sunday, March 2, 2008
Tonight we are having a scavenger hunt. Team 1 is Dakota, Cody and Amber. Team 2 is Me, Jody and Elijah. Each team made up clues for the other team and will place them around town today. Tonight each team will set out with video camera in hand and let the recording begin. When we reach our 10th place we will all come home and watch the videos while we eat Frito Pie. I 'm going to make sure I use my nebulizer before it all starts and probably before I watch the videos too!
Elijah is in a great little FIAR/KONOS/UNIT STUDY co-op group.
There are 3 families and 4 children. We meet every Friday evening 1 - 3PM.
We love our little co-op group!
I've been praying about something for Dakota and just yesterday that started coming together. He is going to be able to get with some friends and do some
fun school stuff. Thank you Jesus for answering my prayers!
Sunday after morning church we came home to a day of laying around watching movies and putting model airplanes together. Then jumped up and got ready for the evening service and took off. When we got back home we did get all our chores done before getting ready for bed.
Today my brother, Cody and his girlfriend, Amber came over and got the kids to take them swimming at Amber's house. I took a long nap. Jody came home from work and we had a nice dinner. It's now dark and the kids are not back yet.
I've had a lot of time to think today and I spent some time just praising God for providing for my kids when I least expect it.
Okay tomorrow we need to get some school things done that we have been putting off.
I'll introduce my family. I'm Kayla, the wife of Jody and the mother of Dakota 14 and Elijah 6.
I was so ready for a Saturday and wanted to sleep late. My eyes popped open at 7:30. I was so mad and tried my best to go back to sleep. I laid there until Elijah woke up. He came in and asked was it the day he was getting a model airplane. We had told him when Daddy was off on Saturday they could go to Hobby Lobby.
Jody got on up and cooked breakfast. I called my brother who lives next door and told him breakfast was ready. We ate, cleaned up, got dressed and went to Hobby Lobby.
We each had a 40 % off coupon. Jody and Elijah got model airplanes and Dakota and I got art stuff. We headed back home. Jody and Elijah got busy working on models, Dakota got on the computer and I went and laid down for a nap. It was so nice.
Cody and Amber came over. We ordered pizzas and played mexican train and DVD family fued. Then we loaded up in the van and went down to the drag races and watched for just a little while. It was a good Saturday. Now I've got to get in the bed so I can get up for church in the morning.