Thursday, March 28, 2013

Long overdue update:)

Where to begin?!  So much has happened since my last post!  Time slips by too quickly!!

For Dr's appointments- I've had one with the hematologist.  My blood levels are still low, and one test showed that I am functioning at 80 when it is suppose to be around 500-1000.  He is trying to get a shot called Procrit approved with insurance to help get my levels built up and not have to have so many blood transfusions.

I also have had troubles with the hole of where the j-tube was.  It still has not closed up and is still draining like crazy.  I went last week to have a radiologist to try to have the j-tube placed and to gradually go down in size of tubes till the hole would close up.  Unfortunately, he was unable to place it all the way in.  It seals up, but due to the pressure inside it opens up the hole and gushes out bile, burning the skin around it.   I went this week for a second opinion and this Dr. has had 3 other cases like mine, and it has something to do with the way they do the laparoscopic procedure is done when they place the j-tube.  He said what would be best, and he done with the others like this, is to go in above the hole and make an incision and find the hole in the intestine, sew it closed push it away from the abdominal wall and sew the abdominal hole closed too.  Thankfully, I'll be out and in dreamland when he does it.  I am scheduled to have it next Wednesday.

This Saturday is a very special day in our house.  It is Kelsey's 12th birthday!  Hard to believe that my baby is gonna be 12 years old!!  12 years old people!!  Yikes, time has REALLY flown by!  I miss the baby/toddler days.  Her little ringlets of curls on her head.  Her hair still has some natural curl to it.:)  The one who as I would make Christmas cookies and have them on the table cooling, would sneak one from the table and I'd find chocolate melted around her mouth. Ha!  Since she was little she has had a tender heart.    She has grown into a very beautiful young lady.  She has such a love for God and a willing heart.  She has been such a blessing to me with me being sick.  She has had to grow up quickly- and that can be both good and bad.  I don't want her to miss any of her childhood, and grow up too quick on us.  She is staying ahead of her studies in  home school. She has less than 2 months and she will have completed 6th grade.  She had a gift card to Target a few weeks ago and was wanting to buy a baby doll, and I told her no.  We just CLEANED their bedroom a week before and got rid of a sack FULL of toys.  She still has some dolls and baby dolls but she is going to be reaching a point where she won't play with them.  :(  It still seems like yesterday when we came home from the hospital with her.  Shane and I were talking the other day about how she said things when she was a toddler and got to laughing about things she would say.  :)  It is so neat to see her blossom into the young lady that she has become.  I am enjoying our time together.:)

The kiddos start Spring Break today!!:)  We are planning on taking a short trip to Shipshewana, IN on Monday and Tuesday.:)  Also planning a trip to the gummy bear factory.  The kids haven't been their either so that will be a fun place to stop also.  Be still my heart!:)  Ha!  We are all looking forward to the little get away. What a beautiful day it was, perfect to start Spring break on!  It was in the 50's today, and the kids wanted to wear their flip flops....umm no sorry not quiet yet.  But we're getting there:)

Wishing you all a Happy Easter.  I'm sure most of you will be getting together over the next few days with family and enjoying memories and treasured time together.  Don't forget to take time to focus on the true meaning of Easter.  To celebrate the resurrection of our Lord Jesus Christ.  He has RISEN and is ALIVE FOREVERMORE!!!

Thank you so much for all your love, support in cards, phone messages, and emails and most of all, all of your prayers.


Monday, March 11, 2013

On our way HOME:)

We made it to Cleveland for my doctor's appointment.  It went well.  He is very pleased with the weight gain from prayers and TPN. They are going to change the TPN again to have more calories in it so I can gain more weight.:)  He said I need to be at 125 to 130 to have the smart pill test.  For now the intestinal transplant is on the very back burner and would be the very last option.  He said even though I look good, he can tell I am not up to par with my energy.  Next time he would like to see me walking from the lobby to his office.  It just still doesn't take much to wear me out and exhaust me.  I have been doing some excercises and he wants me to continue doing those to build up muscle also.  The J-tube is still leaking like crazy.  The area is still not closed up so he wants me to follow up with the GI doctor and have a small J tube put in and once it starts to close up around the tube go to a smaller tube and keep going down in size till it closes off.

Good news, I got the cream that I had left there on my bedside from January.  They threw that one away and I couldn't get another one.   No one knew the name of the "special" paste.  I got a script from him while I was there today.  The cream seemed to help back in January around the J-tube from the drainage I had around it at the time.  You won't believe the name of the paste...CC Paste.   How original :) ha ( Cleveland Clinic).   I have applied it already several times but it's not staying on too well with the drainage.   All I can say is that the j-tube drainage burns and causes terrible pain. The skin is red, irritated, and raw from the drainage which is bile eating away at my skin.  Even if it relieves the pain a bit for a couple minutes, it's worth it.  I have a follow up appointment again in 3 months.  Thankful for a good report and for the progress being made:)  To God be all the glory!! Thank you for all your prayers!!

We decided after the appointment to head back to Sturgis, Michigan for the night.  We drove in and out of rain through out the way there.  Can anyone guess where we ate supper? HMMMM....of course-The Blue Gate Restaurant in Shipshewana.  I got me some mashed taters.  :) Yummmy!  I couldn't finish them so I got a to go container so I can have them for supper again tomorrow night, too.  Thankful for a nice comfy hotel for the night and praying for some wonderful rest tonight.

When I talked to the kiddos tonight they were all excited for us to be coming home.  I was so glad to be able to tell them that we would be home tomorrow.  They all were having one of my Italian Ice's tonight.  Can't wait to get home and snuggle with them and give them all big squeeze's.:)  We'll even get to see Kelsey off on Wednesday for her first trip on with the youth. :)

One last thing- when we woke up this morning at the hotel- outside our window was the big Oscar Meyer WienerMobile.  Pretty neat!!!:)  Shane took pictures for the kids to see.  Would have loved to have gone inside of it!  The receptionist at the hotel here said that a lot of people were pulling off the interstate just to take pictures of it since early this morning.  It was the talk of the hotel.:)   Wonder what the kids would have done if we pulled up at home in the driveway in that! Ha!  Matthew has a hot wheel that is a replica of it.

Thank you for all your prayers, love and the emails of encouragement.  God is great and greatly to be praised!!


Saturday, March 9, 2013

Getting Packed Up

I am preparing for my doctor appointment in Cleveland.  My mother-in-law is in town to help out with kiddos while we are away. I almost have my things together.  Just need to put them all in the suitcase.   We are planning on leaving when we get home from Sunday School tomorrow.:)  We'll stay the night in Stergis, Michigan then drive the rest of the way on Monday.  My appointment is early afternoon so I'll update the blog in the evening sometime letting you know what the plan of action is.

  I had blood work done on Friday and it showed that my count is a bit down.  It has come up since the 2 units of blood last week, but I'm feeling pretty fatigued, at times like I could pass out, racing heart, and the list goes on.  The hematologist wanted me to get 2 units of blood since I would be going to Cleveland.  My nurse couldn't believe how pale I looked today as she was hooking me up for my blood.  I can already tell a difference after just 1 so watch out- I just might feel like running home.:) Just teasing:)  So thankful I got this before leaving though.  Now I can feel half way descent for the BIG trip.  I did break out in some hives and severe itching!!!  YIKES!  Had prayers, 2 Benadryl and  Solu Medrol  thru the IV.  Needless to say, I am one tired patient!  I was there from 10:15 am-6:30 pm.   Glad it is done though.  Now for some more rest.:)

Talking about trips, Kelsey is almost packed and ready for her trip for the Youth Conference.  She doesn't turn 12 till March 30th, but since it's not too far off they are letting her go.  The girl is super excited!!! She is looking forward to having a great time.  Also a time in her life of drawing closer to God.  I know she has already been praying about the conference and we have also.  I am excited for her, yet a place in my heart aches to have my baby growing up so fast.  What a beautiful young lady she is becoming, and it makes this Mama's heart so proud of her! (And my other two:))

The two younger ones are having a hard time with Big sister leaving and Mom and Dad being gone also.  Poor Kailey bug is having a rough time not going with us.  She is wanting to go along with us this time since we took them back in January when I got admitted.  She thinks that I'll be admitted again.:(  With tears falling down her face she said, "Mom,  if they admit you will you save a spot for me in your bed?" Awe..tears n sniffs for Mom! Sometimes it feels like your heart is being ripped out!  Precious Kids!!!:)  I am one blessed Mama!  Thank you, Lord!!

I'll keep in touch and update the blog.  Thank you for all your prayers, emails, and love.  God is so good.  I have so much to praise Him for!!!! Praying that you are having a wonderful weekend.  Gonna enjoy an evening with my family and get some snuggle time in.