Home Resting:)

I made it home last evening.   It feels so good to be a family once again.  To be in my own bed with my own pillow.  Not having to be woke up for my vitals to be taken or hear someone in the other room with their TV blaring.  I love hearing the kids playing with each other and them laughing.  I love that one of my kiddos gave me a foot massage for about 15 minutes and talked with me.  I love hearing the sound of Matthew's race car set that Daddy and him are playing with.  To hear the sound of their footsteps as they come into my room.  I love the hugs and kisses they give to me.  The smile they show for me being home.  God is so good to me! :)

Just been resting last night and also today.  Woke up this morning throwing up but since then just been dry heaving.  So glad that my anti-nausea medications are through the hickman now.  I am also on an acid reducer for the gastritis and it's given thru the hickman also.  I wasn't sure how to do it since it's a powder and you mix it with a syringe of saline, so I waited till this morning to take a dose so I knew how to do it.  The medications make me very tired so I do sleep a lot.

Only a few more days till we head to Cleveland.  Need to start getting some clothes ready for myself and all my medical supplies.  That should keep me pretty busy on Monday.   I was wanting to have all my Christmas
decor down before leaving but with all that I have gone thru the past week I think I'll be waiting for a week or two after we get back home to do it.  The kids are super excited about the trip.  Glad they are able to go with us this time.  Hopefully the weather is decent on the way there and back home.  :)

Thank you for all your prayers, love, and emails.
Love-
Jamie

Still in room 430

Still reporting from the hospital. I am hoping to be HOME by tomorrow. I think they are trying to get approval for phenergan and zofran in IV form.. I am feeling a little better but must stay on the anti-nausea meds to at least function a smidge. Thank you for those who have either called, visited, sent cards, or most importantly prayed.

I pray that all of you had a wonderful Christmas with family. Christmas morning, my sweet honey brought a small decorated tree along with some of the kids small gifts. I was able to watch the excitement on their faces. It felt so good to be a family once again. They left for a while back to Princeton, then came back that evening. Then they had to turn around and go back to Princeton because he forgot to bring my TPN. I felt so bad for him. I know he had to be worn out with all the running back and forth. We made it a good Christmas despite the fact that it was one spent in the hospital. Sometimes you just make the best of what you have, and that's what we did. :)

There is a sweet X-Ray tech that saw my name on the hospital list Monday and while she was working Tuesday, she came in the room and surprised me with a beautiful card and some wonderful smelling bath wash and body lotion. I had another surprise from a cousin that made me THE BEST Christmas card. It had pictures of her Mom and my Grandma on it along with pictures of the kids with them.

We will leave Tuesday for Cleveland Clinic. We are making it a fun trip for the kids. We wanted to take them to Shipsiwanna for dinner and a play but the whole town is closed January 1 for New Year's Day. Maybe on the way home we can stop.

I don't know the agenda once we get there for my appointment on January 3. We'll just wait and see. I do want it to be a special trip for the kids though. :)

Love to each of you

Jamie

Posting from room 430

Yes... I am back into the hospital. Not where I planned on celebrating Christmas, but I'll make the best of it. I'll be surrounded by my wonderful husband and 3 beautiful children.

Tonight, I will just focus on getting some much needed rest. I have been unable to keep even bile in my stomach without throwing up and last night it was blood. I called my GI doctor locally and he wanted me to contact Cleveland and let them know and go to the ER. I contacted Cleveland and they wanted me to the ER immediately. I got ready and Shane took me.

I had some meds in the ER which helped a little but not enough to make it home on and not have to come right back.

So here I am enjoying the view of the parking lot and the refection of Christmas lights in the window.:) Thankful that they take the time to put lights up in the trees and neighbors decorate with lights outside-I am able to still feel a bit at home. :)

I was able to enjoy a beautiful candlelight service at church last night. The service was just beautiful from beginning to the end. It felt so good just to be in the presence of God. I read a little saying-The magic of Christmas is not about presents but HIS presence. Oh, how very true!! I want to always be in HIS presence.

I pray that you all have a wonderful Christmas with your family. May you always keep the true meaning of Christmas in your heart and not forget the one who we are celebrating. :)

Thank you for all your prayers, encouragement, and love!

Love and Prayers-
Jamie

This and That :)

I am sorry for not updating the blog earlier, for those of you who have been waiting.

On Wednesday, I went and had my tubes both changed out.  The balloon that held them both in place was completely black on both of the tubes. YUCK!!  The doctor wants to start changing them both out every 4 months and scheduled it for April. :) Hopefully that will help keep away any surprise tubes coming out too!  While he was in there he noticed I had severe gastritis.  Just another bump in the road.

I got home that night and ran a fever no sooner than I got into my bed.  It was up to 101.7.  I took some meds immediately having been down this road with the first tube changes back in May.  I rested and continued to take meds and by 4 pm I called the office and the doctor wanted to put me on an antibiotic for 3 days with the bacteria that can be stirred around in doing all he did.  I am fever free and just a tad bit sore at times, but doing well with the new tubes, for the most part.:)

On Thursday, I went to the Hematologist and he said my blood work is still low and he thought by now I would be much higher and in the range it should be.  He said one infusion of iron is like having 5 units of packed red blood cells.  We are going to see how my body responds in 3 weeks do another blood test, rest another 3 weeks and do some other blood work, then see him again to discuss it all.  He still isn't sure on it all and said he may end up possibly having to do a bone marrow biopsy to check things out.

Some very exciting news- I am 111 lbs!!!  YEAH!  And since I'm still unable to tolerate anything by mouth, TPN has made the difference!.  THANK YOU, LORD!!!:)

On Thursday evening, we went to Dixon to watch the United States Air Force Band.  I really wanted to go and knew it would tire me but I wanted to do something as a family and so we went and sat up in the balcony and enjoyed hearing them perform.  WOW!  If you ever get the chance to go to one, it is one amazing and touching concert!  They did Christmas songs for the night.  It was a free concert and I thought the place would be packed but it wasn't , sad not many our age were there, but it was a lot of the "older" crowd.  It was so fun for the kid also!  I enjoyed watching their faces as they watched some of them play their instruments.  It felt good to do something as a family before Christmas.  Watch out...we might come sing at your door step:)

I have done a little Christmas shopping.  Not stressing out over things like getting the best bargain.  SIMPLE-that is me.  I am enjoying being together and watching the kids enjoy the joys of Christmas.  The true meaning of it all.  They are looking forward to Christmas break and we are trying to get our plans for our trip to Cleveland

Good Night:)  Love-Jamie

An update from room 427

As some of you may already know-yes, I am in the hospital. I went to the ER in Dixon Sunday due to the nausea being so bad. I ended up throwing up twice -sorry if that's too much info for you :/ I had my labs drawn and they looked good, but the blood count is still bordering low. I see the Hematologist on Thursday, so we'll wait in see what he says. I am still not taking anything by mouth. No popsicles, jello, italian icees, or ice chips.

I am having my J-tube placed in Moline on Wednesday by scope and my GI doctor here wants him to change my g-tube out also along with checking my esophagus and stomach.

I did get a hold of Medtronic regarding a programmer to see if possibly my pacemaker got turned off and just needs turned on. Wouldn't that be wonderful if it's that easy?! Looks like tomorrow I'll be heading home:)

There are some days I wish that this was all from being pregnant and at least at the end of the 9 months have something to show for it! But then I would have a little one to be taking care of too! I think God blessed me with 3 beautiful sweet miracles already and I am forever blessed!!! I am so thankful for God's amazing strength he gives. So glad that I am in His hands and know that no matter the storms that come my way, I am anchored in Him and in His everlasting arms.

Love-Jamie

Appointment today

Today, I had an appointment in Moline with the doctor to look at my J-tube.  It has been giving me problems for a month or so, and the past 2 weeks have been a lot worse with it.  It feels like a match is being held under the skin of that area and is very painful.  Well, today we confirmed that my balloon that is holding the tube in place is either burst or leaking and is therefore leaking content out onto my skin.  That is why I have the burning pain.  He is going to try a shorter tube, so he has to order it.  The office will call once they get it in and then we'll set up outpatient surgery to get it done.  I'm just glad they got me in and took a look at it. :)

The weather is so nice here!  Who would ever have dreamed that ILLINOIS would have 60+ degree weather in the beginning of December.  A little bit of that cold ,fluffy, glistening,white stuff would be wonderful for Christmas, but otherwise I can do without it.  These bones are already cold without having the cold winter weather to add to it!:)  Would be great to have weather like this the first week of January to make driving to Cleveland for my appointment is a bit easier.

I have to share a new Matthew funny.  My nurse came from Moline last Thursday to change my dressing to my hickman and the nurse mentioned to the kids about going sledding at a park by his house that has a big hill.  He also talked with them about going ice skating while there and Matthew's eyes were huge and you could see the excitement on his face.  As soon as Shane came home you could hear him from the bedroom telling Shane all about it.  Well before the nurse left he said there is one thing you do need to do-pray for cold weather and snow.  So that was Matthew's prayer that night. The next morning he woke up thinking it had snowed with the frost on the roof outside his window.  He was so disappointed because he was ready to wear his snow boots to school.  I told him not to get disappointed yet.  It will come.

Made me think of how many times we get discouraged and upset  because we prayed and God didn't answer and come through like we expected Him to.  Our times are in his hands and his thoughts and ways are higher than ours.  I want to keep putting my hope and trust in him.  It's all in His times and in His hands.  I know He will see me through.  He is so good and I am so thankful to know Him!  Thankful for His everlasting love and strength for each new day.  Knowing I am not alone, but He is right beside me each step of the way.

Love-
Jamie

Good News

I'm still learning the hoops of it all, but I played around on my blog and was able to change it from Thanksgiving to Christmas all by my self! :) I don't know a whole lot about that kind of stuff and when I did it, I was pretty excited to not just pick out the background ,but to have changed all the settings by myself.  I even added snow falling but with it having so much white in it it really only showed on our picture and was hard to notice, so I deleted it.  Boy was I scared, because I didn't know if it would erase the work I had just done.  All was well though.;)

I pray that you all had a wonderful Thanksgiving with family and friends.  I started off by making chocolate gravy and biscuits for breakfast.  It's a southern style breakfast. YUM! Afterwards, we went to Peoria and had a nice and relaxing time. The kids enjoyed playing outside for a bit also. On the way home, we stopped a few places to look at Christmas lights. Thank you, Lord, for your many many blessings!

I had another iron infusion on Friday.  I still walk away with a fullness in my heart, saying thank you, Lord!!  I go back to my regular schedule of Thursdays this week.  They are starting to help according to my blood work. I was expecting to have a bit more energy by now and not nap 2 times a day. No worries-I'm not out raking the leaves, fixing a 5 course dinner, & fall cleaning my house.  I am grateful that I am able to snuggle with my kiddos, make them a hot cocoa to drink, and throw pizza and fruit cocktail together:).  I am glad for the little and big things I can do.  My main thing is to take things in strides. :)

We have been enjoying the Christmas decor and lights all aglow.  We have enjoyed the lights being off in the evening and relaxing with the Christmas lights glowing in the living room and dinning room.  To complete the picture, we're enjoying listening to instrumental and Christmas music playing in the background.   I kept things pretty simple this year so that when we leave for Cleveland in January things will be all fresh and ready when we get back home.  Kelsey was a huge help in getting things out and helping decorate.:)  So thankful for the our wonderful children.  I am so proud of all 3 of them for the help they have been!!

Not sure how accurate this is, but it shows that my blog has been viewed in Russia, United Kingdom, Germany and a few other spots on occasion.  If you are reading from out of the United States, it would be wonderful to hear from you!:)  Sometimes I have heard others have issues with leaving comments, so if you'd like to email me it's on the right hand side under 'about me'.  For that matter, even if you're in the United States, I love hearing from you, too!  Thank you for those who do comment and email.  It is a blessing and encouragement.:)

May each of you have a wonderful week!:)

Love-Jamie

Blessings

I feel so blessed!  God has blessed me beyond measure!!  I have so much to be thankful for.  No matter my health may not be the best, but it could be much worse.  I have the world's greatest greatest husband, 3 wonderful healthy beautiful children, and family and friends that have blessed my life. Most of all, I am thankful to the Lord for His love, grace, mercy,  faithfulness, strength, and hope.  That He has made a difference in my life.  He is my everything and I'm so grateful for HIM!

Wishing each of you a wonderful Thanksgiving with your family!  Praying that you each have a blessed day!  Don't forget to take the time to thank the Lord for His blessings.  Someone eat some mashed taters for me.  I don't think I better the chance. ;)  

We are going to Peoria to be with Shane's side tomorrow.  Normally, we are in Texas during this time to be with my in-laws for Thanksgiving. They made the long trip to see us to give me a break with all that has gone on with me.  Thankful that they are here.  :)  

I have an infusion of iron again Friday at 8:30 in the morning. My counts went down some, but they said not to expect it to go up with the first infusion or so.  My white count is down, so I have to be very careful in crowds.  With it being low, I can catch a bug easier so in crowds and stores it's safer for me to wear a mask they said so I don't pick up anything.  Also good hand washing -which I try to always do with my hickman line.  I want to keep as healthy as I can.  No more sickies:)

I wanted to share the lyrics to the song Blessings by Laura Story...

                                   We pray for blessings. We pray for peace

Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

When friends betray us When darkness seems to win
We know that pain reminds this heart That this is not our home

What if my greatest disappointments Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life The rain, the storms, the hardest nights
Are your mercies in disguise

Thank you Lord for the prayers you have answered and for what your going to do.  You are my All and I continue to lean on You.  Thank you all for you prayers for my family and me.  Good is so good and I am blessed beyond measure!  

HAPPY THANKSGIVING!!

Love-Jamie

Appointments and Iron Infusion

Good evening, on this fall chilly night.  I pray this finds you nice and cozy warm.  I am sitting in front of a heat register typing up this post on my computer with a warm blanket.:)

I had two doctor appointments yesterday.  They both went well.  All is looking well with the sites.  That is a good thing.:)  I have till next week with the antibiotic and then I am done with taking it.  In 5 weeks I get the stitches out of the new line, too.  Not too much to report on it.  The infectious disease doctor did say that all is fine and no need to come back.  I pray I never have to see him again.  Don't get me wrong-he is a very good doctor, but I just don't want another infection.:)

I had my iron infusion today.  It's a reddish brown color.  They gave me a test dose and I itched a little bit, watched for any hives and never saw a one.  When the nurse came to start the treatment, she asked about any reactions since I had not said anything.  I told her and she looked to make sure all was well then checked to make sure with the doctor it was alright.  I got it and had no reaction.  They even kept me a bit longer to make sure there would be no reaction.  All was good and I came home and slept the afternoon away.  Woke up with some issues so I called and they told me it could be a reaction to the treatment and to take Benadryl.  Well I'm now tired on top of tired :).

It broke my heart to see the chairs quickly fill up for patients to have chemo therapy while I got my infusion.  I had a surprise and got to see a friend walk in to have her therapy done and had another friend of mine with her.  All I can do is pray that God would touch them.  It was nice to sit with a familiar face, but heartbreaking to know she too has her own battles.

I am so blessed to be able to take my need of healing before my heavenly Father.  What a privilege it is to lay my needs at His feet and know that He is more than enough.  That He will come through in His time and during the wait he gives the the strength and patience to endure.  Not all know of that hope.  I pray that as I go through this that God uses me as a vessel to help reach out to others and that my light shines for Him.  Through all of this I want to give Him all the glory and praise.  For He is forever faithful and my hope is in Him.  Lord, let my faith never fail me.  I lay down tonight feeling a lot more blessed after being in a room with about 10 cancer patients.  God, thank you for my health!  No, it may not be the best, but it could be so much worse.

Thank you once again for the prayers and encouragement.

 Love-Jamie

Busy week ahead:)

Today I had a Doctor's Appointment with a Hematologist.  With me being anemic and needing the 3 units of blood, it is good to look into things to make sure all is well.  He is wanting to have me get some blood work done tomorrow.  On Thursday, I am going to have an infusion of iron.  We are going to try a couple of them considering my iron had bottomed down to 3%, if I understood him correctly.  By having the infusion it is in comparison to 3 units of blood so by the time I am done with all 3 units it would be like me  having 12 units of blood.  We are praying that will be all that it is and no further testing will be needed.  It turned out to be a good appointment.  I still have 2 more appointments this week also.  One with the with my surgeon to have a stitch removed and one for the infectious disease specialist for a follow-up.

God is so good to me.  Walking into a cancer center makes you so appreciative of what you have.  The blessings of good health even in bad health.  It made me walk away thankful of the little and big things I can still do.  It is very much the little and simple things in life you are grateful for.  You never know how appreciative you are for those things until you do not have them any more.  Things could be worse off than they are for me and I thank the Lord for His hand upon my life.  For keeping me time and time again, for His faithfulness to me.  for loving me and giving me hope!

Thank you again for all your love, Prayers, and support!

Love-Jamie

Home :)

We are finally home!  :)  It felt so good to hug my kiddos and it is wonderful to be home and in my bed.  The nurse came out tonight to change the dressings and all looked good.  Thank you, Lord!!  Just some bruising and a bit of swelling and lots of pain- all to be expected.  So glad everything is going well.  I will make sure to stay on top of my pain meds.  It does make a difference.

Also, today is a very special day.  16 years ago today, I married my best friend!  Hard to believe that it has been 16 years!  I am so thankful God has blessed me with the world's best husband.  Sorry ladies-it's true;)  He has been with me thru some hard times and a lot of men would not have been able to stick it out like he has.  I am beyond blessed!!!  He has had to be husband, daddy, nurse, best friend, and do a lot of my role for me as far as being a cook, house keeper, laundry washer, get kids up and ready for school, and the list goes on. Not once have I heard my sweet husband complain.  I am BLESSED!!!

We had a wonderful day together reminiscing about our wedding day.  We listened to some love songs and some smooth jazz music while traveling home.  So neat going back and saying, "remember this and that?":)

God has blessed our marriage and I am so thankful that He is first and foremost in our lives.  A lot of people our age get out of marriage before 10 years has even hit.  I am so thankful to the Lord that we have 16 wonderful years that have brought us even closer together to each other.  I love you, babe, more and more with each passing day!  Happy 16th, anniversary!!

Half Way Home

We left Cleveland mid-morning to start back home.  We had already made reservations and knew we were only going half way today though.  That was long enough for me.  I am having quite a bit of pain, even with meds to help.  Every bump on the road, I think I felt. :(  Shane was so careful and even would warn me that one was coming.  It's not like he couldn't have kept going lane to lane bouncing back and forth-even if there was a car next to to us. :) Just teasing ;)

We stopped in Sturgis, Michigan for the night so I could rest.  We were able to check in early, so Shane took some work down to the lobby and let me rest in the room for a while because last night was very rough.  As soon as I would lay back, I have a lot more pain and some pressure where they worked.  So I was grateful to be able to rest some.  He turned Pandora on to help with the noise of the housekeepers that were still trying to finish up some rooms.  I had drifted off and on several times and got into a really good sleep and housekeeping came in and scared me to death.  Thankfully I was able to get back to sleep  and got some much needed rest.

Afterwards, we went to an Amish community called Shipshiwana, IN and ate at a restaurant called the Blue Gate.  They serve sides of real mashed taters:)  YUM!   The town is getting ready for Christmas and they had the place all decorated and it was so pretty.  Even had soft instrumental Christmas music playing in the background.  So much to take in!  Also was neat when Shane picked me up at the door to hear the sound of the horses clomping.  I can't wait to go back when I'm feeling more up to it.  But it was a special treat:)  Thank you, honey!!!

Getting ready to turn in for the night.  Thank you once again for all your prayers, love, and support.  Most of all, I am thankful for God's faithfulness.  I am so blessed!

Love~Jamie

New line in :)

We had to be at Cleveland Clinic at at 10:15 this morning.  So in order to be there on time, we took the shuttle from the hotel at 9:15.  We got there, checked in where we thought we were to be, thinking we had some extra time, but we were checked at the wrong place.  By the time we arrived to check in at the right spot, it was already 10:00.  So much for kickin' back!

We were taken back about 10:30 for all the pre-op stuff and then sent back to the waiting area.  Around 11:15 or so, they took us to the pre-holding area and waited there for about 20 minutes, talked with a doctor, signed consents, and off I went.  They snuggled me with some warm blankets and began getting things ready.  I was awake in the room for a while after they began prepping and was conversing with them. Next thing I knew, I was back in my recovery cubby.  They got Shane and it seems things moved quickly from there.  The nurse did say that they had a difficult time getting me out and had to give a little more sedation, but other than that, all went ok.  I am extremely sore though.  They did give me some meds to help before leaving there to head back to the hotel.

I am back at the hotel and taking it easy now and thanking the Lord for bringing me through another surgery and keeping your hand on me.  I have so much to be thankful for!  Not just during the month of November, but with each breath I take and each day that He has blessed me with.  God is so good!

We are in hoping to get some rest in the morning and hopefully getting half way home tomorrow and do a bit more recouping and make it home on Thursday.

Thank you so much for  each of your prayers, love and support!!:)

Love~Jamie

We made it to Cleveland:)

We have arrived at the hotel!  Glad for a safe trip, along with a few naps .:)  It feels good though not to be riding in the vehicle and relaxing.  :)

We did make a stop at a candy factory in Merrillville, IN.  I can eat some gummy bears and that place makes awesome gummy bears!!  They have a package that is 12 flavors and oh so tasty. YUMM!  Of course, I sip some hot tea with to help them dissolve.  The place is really neat.  The name of the brand of gummy bears is Albanese.    

I am to check in tomorrow at 10 and then surgery for the line at 11.  Hopefully, I'll able to get some rest here at the hotel when we come back tomorrow night.  Just pray with me that all will go well.:)

So grateful once again that God knows my name and where I  am.:)

Love~Jamie

An update from HOME :)

Ahh.  It feels so good to be at home.:)  The kids and I have been able to have some snuggle time together.  They got out early Thursday from school and Friday had no school due to parent/teacher conferences.  It has been wonderful.:)  They have been a big help for me also.  It just doesn't take much out of me to wear out easily.

Matthew came home from school yesterday with an envelope for me to open.  Inside was a typed letter from the school saying they had taken up a collection for us and there was a check that was inside along with 2 gas cards!  God is so good and He knows just what we need.  What a blessing from the staff and students of the collection that they took up for us!  Wow-my heart is overflowing and so touched by this HUGE surprise!!  Thank you seems so small in light of what they have done!!  Not only that, but their teachers have been helping them with schoolwork to help lighten the load at home.  So blessed to be a part of a wonderful community with some awesome people who truly care!!  THANK YOU!!!!!

Everything is going pretty well.  I had labs today and also have some on Monday.  An In Home Care Nurse came to see me last evening and he changed the PICC line dressing.  All looks good with it, so it should be fine till Tuesday.  On Monday, once we leave take the kids to school, I have some lab work that needs to be done, then we will be on the road.  I am needing to be at Cleveland Monday and catch up on some rest in the hotel, then Tuesday I have surgery scheduled to have a new hickman line placed.  We'll take time for me rest and recover, then head back home to recoup some more.

They are wanting the line placed ASAP so they can get have me use the ethanol locks in the line again.  They are not compatible with the PICC line so we are not using them.  They are suppose to help with line infections so they want me to be back on them.  I still will finish my course of antibiotic till the 21st.  

So, I am asking once again that you would keep our family in your prayers as this will be hard to once again be away from each other.  It will be a short and quick trip.  Still feel like I'm trying to still get settled in at home from the hospital stay.

Thank you, once again, for all the prayers.  God is so good and He is still in control.  So glad to be in His Hands.:)

Love-Jamie

Going HOME! :)

Yes!!  Thank you, Lord!!!!!!!!  There is going to be one very happy family to be together tonight.:)  I have missed them so much and ready to be a mama and wife again.  Ready for some major snuggle time together. Ahh makes my heart melt just thinking about it.  I'm just waiting for the antibiotic to run through, then I'm dressed and out the door.:)

The Infectious Disease doctor came in yesterday and said my liver count was up. Well, today they were up even higher so he ordered an ultrasound of my liver along with some extra blood work and for me to be seen by my GI before leaving.  The nurse came in saying that since it has gone down a little they were going to allow me to go home. :)  So happy:)

Everyone here has been wonderful!!!  I pray that during my time here I was able to help them and let the Light shine in me.  Some even opened up asking me to pray regarding things they are going through.  I once again, through this stay, stand amazed and in awe of the power of God.  With the infection and sepsis both a week ago landing me in ICU, I very well could be not be here and be 6 feet under.  I don't want to take the small things for granted.  For it is the little things in life that truly mean a lot.    

Another Day in Room 421

Still camped out in room 421. Found out today that insurance would only cover 14 days of the antibiotic so they are having to send it back in and resubmit to them tomorrow for 21 days. Please pray that all goes thru tomorrow and quickly so I can get home. I am so ready!!!

I am very much missing my family. I know it's not easy for them either. I am so blessed with such wonderful children and the GREATEST Husband!!!! They have been thru a lot also.

I am just now getting rid of a headache and neck pain I've had the past few days. I am finally feeling relief. Ahh.

Been up walking the hallways and sitting in a chair most of the nite. Hope to get some good rest and be ready to go home tomorrow. Gonna go for one more walk right now and munch on a cherry icee. YUM!!:)

Thanks again for all your prayers!!

Love-Jamie

Still here

Quick update, because I'm beat.

The Picc Line did get put in :) Everything went well!!! A lot better than the first one. So thankful to God that all went smooth. They ended up having to pulling it back out a bit because the catheter was causing heart palpations. All is good though.

We are waiting for the preautherization of the antibiotic for home. That is why I am not home yet,but we are getting there! Hopefully tomorrow it comes through and we are homeward bound! At the latest, it should be Wednesday.

Thank you for thinking of me, and keeping me in your prayers.

Love-Jamie

Report from room 421

It was a surprising day today! I knew with church and all that Shane and the kids would not be making it up to see me today, which I understood. I knew with the way things usually go with 3 kids on Sunday and all, that it would be a bit crazy to try making it up here. But as I was just resting, in walks my Prince Charming. What a wonderful surprise for me! He said he was missing me...and I was definitely missing him!!! Ahh:) It was nice to just be the two of us and talk for a bit before he had to leave. Thank you, Babe, for being there for me always and for making my day:)

  Not too much going on medically. They are talking of doing the PICC line in the morning. I have had a nasty headache along with my blood pressure being high, so they gave me some Lasix to try to help things. They are concerned of doing a blood pressure pill with my pulse being low and also of the pill lowering my blood pressure too much. It is nothing too big for God, so I'm just praying it straightens up on its own.

I had to chuckle this morning. You know you've been in the hospital too long when dietary sends a note on your tray saying they are out of cherry icee (Italian Ice) cups. Oops;) That's my breakfast, lunch, dinner, and snack in betweens;)

I did get up and walk the hallway 3 times today:) It was one of those good but worn worn out feelings. No pain though, no gain. Hope all goes well for tomorrow and that we will be able to get HOME.

I am grateful to all the doctors and RN's and staff that have taken care of me. They have all been so wonderful and some have gone above and beyond!!! I want to continue to give God all the glory for HE has and is doing great things.

Love-Jamie

It's been a good day:)

Today was a special day for me. Shane brought the kids up around lunch and they had packed them a lunch to eat up here in the room with me. The kids were so excited and told me all about their week at school, we went over school work and read books. We went to the sunroom this afternoon so I could get a walk in and stayed there about an hour. The kids colored and I just enjoyed watching them from my chair. Afterwards, we played a game of UNO. That was lots of fun for all of us. I was pretty tired out by that point, so we came to my room and Kailey curled up in the bed and we snuggled together in napped. Shane was with Matthew in a chair and Kesley snuggled with my robe in another chair. Then they went and had supper, giving me a break and some more rest, then came back to pray with me and and say goodnight.:) What a wonderful day.:) Melted my heart to pieces.

Still waiting for the final report to come back to get cleared for the PICC line. Most likely, it will be placed tomorrow.

Not too much else going on besides a very distended abdomen due to all the fluids and a major headache which could be from my blood pressure being up alot higher than normal.

Thankful to the Lord for being on my side and for saving me with this infection once again. Thank you for your prayers and encouraging emails.

Love-Jamie

Out of ICU and on the Regular Floor:)

I made it out of ICU today!:) Everyone was wonderful and they are some great nurses but it will be nice to be in a regular room where I can have my own bathroom and take an actual shower. I am in one of the new rooms which are nice and my view overlooks the river and "skyline" of Dixon.  Very pretty in the daytime seeing all the trees across the river vibrant in color. At night, it looks pretty with all the lights of the town glowing. Ahh sounds like vacation to me;) Just teasing, but you do have to make the best of the situation and that is what I choose to do:).

My preliminary report on my infection came back negative, but they are waiting for the final report to come back-hopefully tomorrow.  If all is clear then the PICC line can be put in on Saturday or Sunday.  They have a team of nurses who do them and one just came in a bit ago and went thru the process of the procedure with me so it helped ease my mind a lot.  The last one I had did not go well and they have changed the way they do them.

Last night was a bit rough.  After settling in for the night around 12 midnight in the early morning hours over the intercom was a code atlas meaning a patient was getting combative.  Shortly after that a code blue was called and you could hear the ICU nurse taking the cart down the hall.  All I could do was pray and have a heart of thanksgiving it wasn't me that was being worked on.  They brought her up and she was a little noisy and then they must not have thought there was enough excitement going on in the place because the lights in the hall were flashing and you hear code orange, meaning fire.  Whew- glad it wasn't a real on and we weren't having to go down the stairwell all in our matching gowns that are one size fits all and backless:) Ha!  Wouldn't that be something. :/

I did have an allergic reaction to the vacomyocin twice yesterday and so they switched it to penicillin or a type of it and had a delayed reaction to it so just praying that my body won't react to the next dose.

I am so greatful to the Lord for being by my side thru all this.  He's so faithful!!  Also want to say thank you for your continued prayers and emails of encouragement.  Helps the time to pass a bit quicker, especially when Shane and Kelsey leave in the evening.  Tomorrow, all my kiddos will get to be with me and I am so much looking forward to some mommy snuggle time with them.  :)  Again, thank you!

Love-Jamie

Still in ICU

Thank you for all the prayers, support, and, love.  I do believe that God is hearing your prayers, so keep them coming!  Thank you!!

The doctor came in this morning and said that I am doing better, but not out of the woods yet.  On top of the staph and sepsis, I'm having a drop in my hemoglobin even with the unit of blood I received.  So today they are giving me 2 units of blood.  So much can be applied spiritually to it ("that'll preach!").

Also so thankful to those who donate blood.  They are helping me in a mighty big way.  If you are able to donate blood, please go and donate a pint.  I understand if you are unable to, but how rewarding it makes you feel by doing it.  I use to donate blood and it was a wonderful feeling knowing you were helping someone else.  I believe that 1 pint of your helps to save 3 lives.

Hopefully tomorrow I can be moved out onto the floor.  I would love to take a shower and wash my hair. Thank the Lord I can at least wash up at the bedside in the morning and nite.

The care from everyone has been so wonderful.  So thankful to God for His love and Caring Hand upon my life and for once again saving me at death's door.

For some reason I can't get my comments to work, so if you want leave a message please leave it under my email j-pennington@live.com  Thank you!

Love~Jamie

In the Hospital

Yesterday took a quick turn for the worse.  Woke up with a normal 96 temp and within 3 hours was hitting 99 accompanied with chills, body aches and chest pain.  A quick call to the doctor's office confirmed the decision to get to the ER.

Once I got to the ER, my temp had already climbed to 102 and blood pressure was in the 70's.  Blood cultures and labs were drawn and I was sent to ICU for Sepsis.

Today, I have had one unit of blood due to my Hemoglobin level being at a 7.1, antibiotics, TEE to look for any infection in the heart, nuclear scan to rule out blood clot, and finally had the Hickman line pulled this afternoon due to blood cultures showing both Staph and Sepsis both.

Now I can hopefully get some rest.  Still in the ICU, so it's a bit loud, but hopefully can be out in a regular room by tomorrow.  Everyone here has been great, but home is calling me.  Can't wait to be with the kids again.

My new Christmas Tree!!

This was all running at the same time!

Behind on posting:)

Thank you for all of you who have waited so patiently for me to post and for those who have emailed checking on things.  I have had a bit of a rough week, but things could be much worse.  Praise the Lord they are not!! :)

I am having some issues with my line, but hopefully here in the next few days they it will be much better.  I have been to the ER last Saturday nite and then again on Wednesday evening.  Before long, they are going to start thinking that I'm trying to take up residence there! :/ Yikes!  Not good, cuz I'm not.  

I am taking it easy because it seems like for right now with my body that I take 1 step forward and 20 steps back.  I get tuckered out and for the most part taking 2 naps a day.  I better be careful or Shane will be putting me in the nursing home. ;) At least I'm not in bed 24/7.  

I did begin my new TPN and it is going well, I think.  I began Sunday and with the way I have felt this week I can't tell a difference, but I have gained some weight!! YEA!!!  I am down from 20 hours a day to 16 hours.  That  has already made a difference in me not having to lug the backpack around:)!  It can be a bit heavy carrying at the beginning of the first several hours of the infusion.  I was incorrect about the color.  The TPN is not a Mountain Dew color, but it is clear like a bag of IV fluids.  Even though I add my vitamins to it, there is not enough there to change it to that yellow color.  Sorry to disappoint you:) Ha!  I do the white bag of lipids along with the bag of TPN once a week.  To anyone who would like, you are more than welcome to carry the bag for me that day.  I had to drag it to the restroom the first time I got up because it was too heavy to carry.  Where there is a will there is a way.  I do have a new backpack to use on that day so it can hold both bags of fluids and 2 pumps also, and maybe a Jolly Rancher or two:).

Kailey celebrated her 9th birthday this week!  Last year around this time I was sick with staph and sepsis and had just came home from the hospital a day before her birthday, so we didn't do a party.  This year I tried to make a bit special for her.  I think she had a great day!  With her money she got, she is going to get a bigger bicycle.  My oh my!  I am so thankful for each of our children that we have been blessed with.  Kailey has so many times brought such joy to our home.  I love watching and hearing her get tickled over the little things.  She wants 100 cats when she grows up.  I'm praying that changes (quickly)!! :)  My prayer is for her to continually seek the will of God for her life.  To have a servant's heart and to love God and Truth all the days of her life.

I had the enjoyment with some help making one of my favorite things!!  I made caramel apples!  I made 9 pounds!  I did some that were apple pie flavor, some dipped in white chocolate and drizzled in milk chocolate and semi sweet and some in milk chocolate then in white chocolate and semi sweet.  Also did some dipped in Heath bar. When I make them, I even make my caramel homemade:).  What a pleasure it is for me to at least make them for others and know that they are enjoying them!  Somebody might as well, right?!  

Living and loving life:)  I like this saying~The smile on my face doesn't mean my life is perfect.  It means I appreciate what I have and what God has blessed me with.  Love-Jamie

Home and Comments

It feels so good to be in my own bed and at home with my husband and 3 missed kiddos.  We got home around 2pm on Wednesday.  We couldn't get home quick enough.  Shane was fighting a head cold and little cough and I had a sinus headache and sore throat and my GP symptoms.  Usually, I am prepared in case I have to get sick all of a sudden, but not Wednesday. Thank goodness there was a cup handy.

When we got home and unpacked the car, I went straight to bed and stayed there till the kids came home from church.  I had one that clung to me when she got home and was all smiles.  Ahh:)  We quickly jumped back into routine again with school being the next day.  Morning went well with smiles on faces.  It is so good to be back home and back into the groove of things here with the family.

We are going to have a special afternoon today since the kiddos get out at noon.  I have some pretzels in a can that we can bake and put some cinnamon and sugar on and play Pictionary with fall ideas and maybe some 'Apples to Apples'.

I have been having several issues with people leaving comments saying they are unable to or they are not showing up.  Just to make things easier for now till I know how to fix things, we'll just use my email for the comments.  My email address is j-pennington@live.com.   Sorry if you were one who had a note that didn't get to me.

Looking forward to this weekend!  Can't wait to have some family time.  To relax and enjoy the family and the fall weather. :)  God is so great!!! Enjoy your weekend and count your blessing!  So much to be thankful for!!

Just about home

Yesterday was a busy morning.  Shane got up at 4 am because he couldn't sleep.  He woke me up at 6:30 am to get ready for the day.  We packed and left the hotel around 8 am and was at the Clinic around 8:30 for an appointment with a nurse for 9 am.

With Cleveland now managing my TPN, we had some training we had to go through.  She said it would take a couple hours to go through it all.  I had to show to her that I knew how to change out the end caps to my Hickman Line and Shane had to show how he does a dressing change.  She gave us both a few tips of things we can do to make it easier and better.  I now will have to record all my intake and outputs daily and send them in weekly.  They are wanting to wean the TPN down from 20 hours a day to about 12 hours.  They are also changing the TPN and only doing lipids once a week.  So instead of my TPN being a white milky color it will be a neon yellow.  Maybe like a Mountain Dew or Mellow Yellow color.  I think they said they do it this way to protect the liver.  I felt bad because both Shane and I sat in the room and we both were beat.  I kept yawning and had a hard time trying to stay focused.  Before we could leave, she sent me down for a chest x-ray to see where the placement of the Hickman Line tip in correlation to the heart.  

By the time we finally got out of there it was close to 1pm.  By then Shane and I were exhausted.  My body ached and I had a sore throat.  Shane was driving and so tired and I was not any help.  I tried to stay awake for him, but I couldn't and fell asleep.  We ended up getting a room for the night in Elkhart, Indiana.  There was just no way we could drive the rest.  We pushed it just to make it this far.    Nothing like going to sleep at 8:45 at night.  Ahhh!  It felt good!  Down side to that is I was wide awake at 11:45 and felt as though I had a full nights rest.  I laid there for a long time listening to the guy in the next room snore.  Seriously-it sounded at times as though he was in our room.  I think with me being a light sleeper that ear plugs would be a good investment.

So thankful that God has given us a safe trip and beautiful fall weather.  I'll enjoy the colors again the rest of the way home today.    God is so good!  I have so much to be thankful for!
Love-Jamie

It's been a good day!

Wow!!  Where do I start?  My mind is all over the place-mostly from exhaustion.:)  Neither Shane or I slept well at all last night.  Don't know why exactly, but this body needed more than just an hour of rest after making the trip here.

This morning was a bit rough start.  I was ready to leave for the day and was getting ready to do my hair when I noticed that the front of my shirt was all damp and so was my skirt.  In checking things out-my TPN had a hole in the cartridge so it was leaking all over me.  Agh... the stuff stinks too.  Thank the Lord I had only been hooked up to the bag for about an hour and so I didn't loose a lot.  I had to hurry, clean up and change clothes and do my hair all in 20 minutes.  We had to be in the lobby to catch the shuttle for Cleveland Clinic.  We got down to the lobby with a few minutes to spare and sit and relax.

We got there and took another shuttle to another building.  This place is huge!!! It is like a city within a city.  We got to the building and checked in where I needed to be.  Since we were early, I went to another area to thank a lady who helped me with the appointment and getting to see the doctor that I needed to see.

Got back up to the waiting area and I was really early but they still took me back and did vitals and all that good stuff.  She went ahead and put me into a room where we waited a little bit.  The nutritionist came in and spent an hour going over things with the TPN and background on everything.   Afterwards,  the doctor came in and we spent an hour with him.  He was so nice and understanding.  He had studied my records and knew everything ahead of time.

The game plan is for me to get built up in weight.  He wants to increase the calories a lot more.  He said basically my body is in starvation mode and that is why I'm still so easily tired.  Before I could say how I feel and things he was describing things just how I felt.  He wants to see me in 3 months and have gained some weight by then and be fattened up.  When I come back, we'll talk about a smart pill that takes measurements and things of the intestine. Last resort, which he said I am a candidate for, would be an intestinal transplant.  He sounded very promising on it even, but it would be a last resort.  Just the weight gain with the TPN he said will help make a difference.

I have an appointment with a nurse tomorrow to go over TPN and some ethanol locks we'll do to help prevent any line infections.  I think things are heading in the right direction.  We are so glad that the Lord opened the door for me to come and to God be the glory for all He has done!!!  Thank you for all your prayers!!!  Love-Jamie

I have arrived!!!

I am curled up with a blanket in my room at the hotel here in Cleveland!!! :) I wasn't sure if I could handle too much longer in the car!

It was beautiful seeing all the colors in the leaves.  God is an artist.  It was gorgeous seeing one tree three shades of color.  It is for sure a fall day with the bit of drizzle that was in the crisp air.

I do have to say that Cleveland is a bit scary.  In less then 10 minutes, we saw 5 cop cars all in different spots.  Thank the Lord for them, but WOW!!  I don't even see that many in Chicago the trip there and back home.  The hotel is nice and the bed seems comfy.  We'll see when I wake up in the morning how things went.  I do have another room at another hotel reserved for tomorrow, just in case;).

It was a rough morning getting ready for church and having one child crying :(.   She has an extra tender heart and when we are away at the hospital and things, she gets upset.  She has a right to be, considering how she has seen me at some pretty rough bumps in life when I was wondering if I would even make it. Please remember to keep the kiddos in your prayers this week also as it is hard on them too!:(  Thank the Lord for a wonderful brother and sis in-law to take 3 extras in.

I'll update the blog sometime tomorrow to let you know how things go. We will take a shuttle to Cleveland Clinic.  I have my first appointment at 11:45 and see the doctor at 1 pm.  Thank you for all your prayers, love, and support for me!!!!!  Love-jamie

We leave tomorrow for Cleveland

We leave for Cleveland OH tomorrow after Sunday School.  Still trying to finish up a few things here and there around the house and put everything into the suitcase. Getting ready to play Apples to Apples with the kids then we have Family Prayer at Church.:)  Just wanted to let everyone know that I'll keep the blog updated as much as I can, that way I'm not making so many phone calls. :)

It's been a bit rough, but God's still good!:)

I'm still recovering from my Hickman insertion.  You won't hear me say too often that ice feels good on it. ;0  It's still swollen a lot and is starting to bruise.  But all looks good and it's to be expected I'm sure.  I felt going into surgery that all was going to go well-boy was I wrong, but thank the Lord He was with me watching over me with the doctor and staff there!  I am sure the Lord kept His hand on me from so much more that could have gone wrong.:)  I am BLESSED!!

I am trying to, little by little, get the kids packed and things ready for Cleveland.:)  We are leaving out after church Sunday afternoon.  That will give me time to rest and be ready for my appointment on Monday at 1pm.   I need to finish getting my charts all put together and ready.  Slowly, but surely, I'm getting there!  We won't know until after my appointment Monday of about how long we will be staying.

The kiddos have Friday off! YEA!  I plan on doing some special things with them  before leaving.  I know it will be hard for all of us.  Matthew keeps asking when he gets to take his trip(meaning to my brother and sis. in-law's)  He is so funny:)  He is looking forward to playing with his cousin.

I am trying to stay out of the ER and stay well.  We went Tuesday nite, they think it may be an inner ear problem causing some dizziness.  I am doing better tonight.  Since the surgery it just hasn't taken much to make me feel exhausted, but I am getting there!:)

Just wanted to keep you updated and thank you for all your prayers!!!    LOVE YOU-Jamie:)

Changed Blog Design

I changed my my blog a bit.  I thought it would be nice to have a fall background.  This is all new with us and I'm having issues getting the pink background to change to another color.  We've tried everything so if anyone has any suggestions please leave me a comment or email me so I can get it changed.  Thank you!!

Home and recoperating

On Thursday, we woke up bright and early at 4:30 in the morning to get ready.  We were out the door by 5 am and arrived by 6 at the outpatient unit.  Everyone was wonderful in the Outpatient Unit and in Surgery.

They took me back to start the surgery and whatever the anesthesiologist put into my IV made me fall asleep quickly.  I  do remember thinking, man I sure hope I can make it from the cart to the OR table without falling asleep.  I did make it there awake, but was out after that.  They had a hard time getting me to a deep sleep though due to my allergies.

Then the programmer for the gastric pacemaker was not working properly for them.  After that things kept snowballing for them.  I think I was in there close to 2 1/2  hours.  My poor doctor and the OR Staff.   Unfortunately, I have a record for things not going smooth for me in surgery.  Thankfully, the Lord has His wonderful Hand upon me and I am recovering.

In a lot of pain, but to be expected for a while with all that I went through.   I have an In Home Care nurse coming sometime today to change the bandages and then I have a follow up on Thursday just to make sure all is well before going to Cleveland.

Thank you for all your prayers!  Thank you Lord for bringing me through another surgery and guiding the doctor's hands!:)

Surgery Date

I am scheduled for surgery on Thursday at 8 am.  I need to be there at 6 am so I 'm heading to bed.  Thank you for all your prayers!  Love-Jamie

Thankful for the protecting hand of God!!!

I have been fighting a lovely sinus headache since last Friday,due to the change in weather.  Well...needless to say with not much sleep and feeling exhausted, I had my TPN go off Sunday at 6:30ish AM.  I felt like I was just getting into sleep, so I just disconnected the line with out flushing-knowing I've gone in he past in emergency situations without flushing 2-3 hours.  Knowing I was getting up at 8 with the alarm, I laid back down.

Well.....in the rush I forgot to clamp off and when I disconnected  I took my antibacterial end cap off too.  Two things I normally do not do.   I had felt something wet about 10 minutes after laying down.  Remembered that maybe I need to clamp.  Good thing I did.  When I woke up at 8 to get ready, I had blood all over my chest!  Talk about a scare!  It wasn't a little TPN that had come out of the Hickman line , but blood.  I did make a call to the nurse-which she advised calling the on call surgical DR.  I got the On call Surgical DR. which asked for me to call my DR. Monday. I thankfully have a double line so I can still use 1 to access my TPN.  But I did clot off the other line.  Not good, because now that means I have to get a new Hickman line put in either Thursday or Friday. :(  That will require me to be put out and be surgically placed.  THE GOOD NEWS IS THAT I AM STILL ALIVE!!!:)   Thankfully the Lord protected me with the line being completely opened that allowed air in and the blood to come out.  I could have gone to sleep and bled to death.

So grateful to know HE watches over us, even when we don't realize it!!:) THANK YOU LORD.
I'll keep you updated on when it is.  Just pray all goes well and smooth.  Thank you.  So thankful to the Lord things were not worse than they are.

Better yet, got in a bit sooner:)

There is no doubt of God being with me through all of this.  I called Wednesday to Cleveland and talked with a lady who recommended a certain doctor for me to see.  Long story short-the Lord worked it out to
where I am going to be seeing the doctor that was recommended and I am going on October 8th instead!   He continues to lead and guide me.  Thank You Lord for loving me!:)

I had an appointment in Chicago with the Rheumotologist today.  He is not sure why all the bone pain and severe muscle cramps, but feels along with my other doctors that it is all autoimmune related.  He did 6 vials of blood and is wanting me to suggest some tests to Cleveland Clinic doctors when I go.  He said the test would be better to have done there while at Cleveland.  The blood results take about 3 days to get done.  He was a very good and thorough Dr.

I am getting some calls from some people saying that they are having issues with leaving comments underneath the post.  If you are one of them and wanting to leave a comment, you can do so by email.  My address is j-pennington@live.com, it is under my profile on the right hand side also. Thank you again for all the prayers, love, and support you show!

I Have an APPOINTMENT

I received a phone call this afternoon from Cleveland Clinic!!! :)  The appointment is scheduled for October 11th.  YEA!  The doctor that I was wanting to get into would take quite a while, so they offered me another doctor who is familiar with the Gastroparesis.  I am absolutely  fine with seeing him.  I am so thankful that the Lord has allowed for it to happen so soon.  I'm still claiming a miracle.  Nothing is too big or too small for God.  He's still God no matter what, and my love for HIM will not change.   Thank you for all your love, support and, most of all, prayers!!

A Few Pics From Benefit

 Here are some pictures from the benefit.  I'll let you know when the slide show is up and going on the benefit site.  GOD IS SO GOOD!!!

I am in at Cleveland Clinic! ;)

I got some exciting news from a doctor's nurse today!:)  She called to tell me that the doctor called and got me into Cleveland Clinic!  I had called them earlier this week to see if this doctor had any suggestions of who I could go to there.  My plan was to have Chicago get me in with an appointment once I had a doctor in mind, but...sometimes our ways are not God's ways.:)

After getting off the phone with the nurse, the clinic in Ohio called to get me registered.  She got to  the point of setting up the appointment and she said that right now they are booking into December and she was going to email the GI department to see if they could get me in sooner.  They said that I should know by the end of Wednesday of the date and time.:) I am praying for it to be sooner just with the way travel can be in winter.  Regardless, God is so good to me and I am so blessed!  What a way to end a rough day:)  Thank you, Lord!

Also thankful for that doctor and his staff.  God has blessed my life with some awesome doctors, nurses and staff that truly care and are supportive.  Some feel like family and I am so grateful for their love and support.

THANK YOU TO ALL OF YOU, TOO!  I wouldn't be here without your prayers!!!  Thank you for your love and support you show to myself and my family whether it has been through a phone call, note, email, or comment left on the blog!

TO GOD BE ALL THE GLORY!!!!!!!

A little bit of everything

I am here, hanging in there with the help of the Lord although I am having some new issues arise. I have an appointment at Loyola in October to see some doctors there that may be able to help.

I am sorry for the lack of updating.  I have had some rough days and I do tire out easily.  It seems as though I have to make a lot more of an effort to do even something small or simple. I think that is attributed to my Vitamin B 12 and D being low. I do not want to complain though-I have so much to be grateful for!! God is so good to me!

The kids are all getting into the swing of school now.  The schedules are becoming more routine for them.  It has been nice the past few weeks when they have had early dismissals, half days, and holidays. I know it's too early to be starting that, but it was a nice way to break in the school year (at least for this Mama).  We are doing our homework and a few household chores and still able to find some time to get to play outside. They try to once in a while ask me if I need a back rub just to be able to stay up a bit later ;) Sure -why not!!:)   Kelsey is doing her best and trying to maximize her time by staying ahead of schedule.  She is doing a wonderful job and I'm very proud of her.

 I am so thankful for Matthew and Kailey's teachers.  They are so wonderful, caring, and supportive. It helps put me at ease knowing they are in  good hands!  I am very thankful for both of them.

It seems like fall is in the air.  Ahh~yes, one of my favorite seasons!!:)  I love the colors, the warmer clothes (sweaters), making carmel apples, sitting on the front porch, curled in a blanket, talking with my Honey, sipping on tea,watching the kids jump in leaves.....and the list can go on.:) I did put up my fall decor and enjoying it being out.  I was going to wait till next week, but I got the itch a bit sooner.:)  So much to be thankful for!!  Take time to enjoy the simple things in life.  I have realized how important those little things mean.  I AM BLESSED!!!!

I do enjoy getting comments from all of you.  I have a counter and it shows where people are viewing the blog from and I have a few that are checking my blog out that are not in the United States. Wow!  I thought that was pretty neat!:)  If you ever would like to comment or leave me a message you can either click at the bottom of the post on 'comment'.  Although it will not show on the blog, I do receive them. Another way is by email -which is on the side of my blog. I do appreciate the encouragement and prayers!!  Thinking it time I see if I can change the template to a fall one.  Or should I say...see if my wonderful, bestest husband can.  ;)

Matthew was so cute yesterday.  When the kids came home from school, I was watching from my bedroom window-them getting out of the car.  Right by the window was a butterfly fluttering on a bush.  I watched as he oh so carefully and cautiously tried to inch his way to the butterfly.  Once he got up to it, he went to catch it and it fluttered around him.  Over and over he tried and tried. It took me back to my childhood days as a little girl going around the yard trying to catch butterflies.  Oh to be a kid again.:)

Not admitted

We are back in the swing, with this being the first full week of school.  Everyone is doing well and enjoying school.  We did get Kelsey started on her schooling on Monday and she is already a couple days ahead at this point.  That is great considering where she was last week.  I programmed her lessons to begin this Monday and to end May 24 just in case we do get behind, she can still make it up by the time the others get out of school.  She has really worked hard and I am so proud of her.  Also proud of the other two munchkins with their homework they are doing each night.

On top of it all, every night they have been reviewing their last of the 100 memory verses they have learned.  It's a bit tough with Psalms 63:1-8.  Once they have it down, we will be done with our 100 verses and I think something special is in store for them having learned that many.  How many adults can say even 50?  I will help them choose some new ones to add on her in the next few weeks to start the new goal of another 50.:)   May they always remember them and put them in their hearts.

I have kept busy since Monday, getting the kids all packed with clothes for school and church, got myself packed and house picked up a bit with knowing that the chances were high of me being admitted to Chicago on Wednesday after my appointment.  I got there and asked the nurse about it all and she said no they wouldn't be admitting me since the swelling was all gone.  Glad the swelling is gone, but was ready to have some answers on a few issues going on.  The biopsy is still in the talks with a specialist/surgeon.  They have not come to an agreement on it at this point.  My doctor feels it would be very beneficial to have the information from it, so they know if they can begin with other treatments.  Treatment would be a lifetime commitment and she doesn't want to start it without knowing.

She did take 8 vials of blood with 14 tests.  Some of the vitamins and things, so it will take a bit for those to come back.  I was close to having my j-tube out of the intestines, but I use it to put meds thru and for some of them, that is the only route they are able to give it.  I'll see at the next appointment with her if I it's possible then.  It would be nice to be at least 1 tube less.:)  I am ready for some answers.

I am and will continue to wait patiently for my miracle.  God gives me strength daily and I feel HIS sweet peace surrounding me. I am a Miracle!  Just to think of where I have been- at times wondering if I would  awake.  He has been through all of this every step of the way and I know He is not about to leave me now.  Thank you for all of your prayers and words of encouragement.  Prayer is a powerful thing!!  Nothing is too big or too small for God!  So thankful to be in the hands of the Great Physicians.

Our Week

We are back in the groove with schooling...sort of.  Kailey and Matthew are at Lincoln and enjoying it.  Kelsey has not started yet due to our mistake.  Back in May, Shane changed the main password to get into the computer and set Kelsey up as a second user with limited access to computer use for schooling to help get rid of any distractions.  Now three months later, neither one of us can remember the password to get into the computer to be able to load her schooling onto it.  There is a man in town who fixes computers and is wonderful, so Shane took it to him tonight to do the works on it.  I don't think Kelsey totally understands that she has to catch up from the days we are behind, but she is ready to start back up again also.

On Monday, we went to Lincoln and took the kids belongings into the class and got to meet the teachers.  Both Kailey's and Matthew's teachers are wonderful and it helps me to know that I'm leaving them in good hands everyday.  They both left that day excited about going to school Tuesday.  Kailey seemed to take Matthew on under her wing and help him a bit with this school all being new to him.

They all woke up Tuesday morning and were ready to face the world!:)   They ate their special breakfast that I had made, then finished final preparations for facing the first day.  Matthew climbed onto my bed and gave me a huge hug, then said, "Mommy, are you still going to pray with us this morning?"  Yes- we indeed did just that as we always do.  We pray for them, for their day, for God to help them to let their lights shine, to be big helpers and peace builders at all times, and for God to keep them and protect them, the school, and teachers.  Hugs and kisses were given and Daddy took them away. :)  As soon as the door shut, the tears flowed.  After some praying and getting myself together, the day flew and it was time to get them from school.  I made it special by getting some ice cream cones at Burger King and eating them there and playing on the playground.  Lots of good hand washing, too! ;)

We found our people who we wanted to help make their day!  Two little boys had come in to play, and had not come to eat, just play as their parents talked and used their phones.  As they left, we gave them money to get cones before leaving.  With smiles on their faces they made they way to the counter and left with cones and BIG smiles.  We also left smiling and we knew the reason why-we made someone's day extra special!:)  Try it on someone sometime you don't know!!:) It just won't make their day, but yours too!!

Unfortunately, my body is having some symptoms that Chicago is concerned with.  I am having quiet a bit of abdominal pain and pain around the j-tube with some other stuff and with me being so far away they wanted me to come and admit myself to the the ER.  (For those of you who remember the hospital stay back in December, I had to go through the ER to be admitted and it took 4 days in the ER before I could even be put into a patient room.  It was a very hard time to be in the ER for 1 day, let alone 4!  No windows, 1 bathroom shared with about 25 patients, no privacy curtains much, and the list goes on :/  God was with me every moment of that stay and He made a way that very nite that I broke down crying wanting to leave and I ended up getting into a room about 2-3 in the morning.) Anyways, she wanted me to call this morning to let her know what I decided.  Shane and I felt like it would be best for me to go.  We had told the kids last nite after church and it was very hard on the kids and us.  By this morning I went to get out of bed and could actually move my feet without there being any tightness.  I looked and could see both ankles!  I thought to myself this is going better!:) Thank you, Lord!! I got the kids breakfast ready and got them up and going.  Getting them out the door was rough once again on all of us. After they left, I started packing up their clothes.

Around 9:00 this morning, I called Chicago and gave them a heads up on it all and explained I wasn't trying to get out of coming that I'm planing on coming if they are still wanting me to.  She began by saying she was relieved that the fluid had gone down and it was up to me with me still having some issues and the abdominal pain.  She stated that since I was stable and things are a bit better that we could hold off and wait til next Wednesday to see the doctor in the office and plan on possible admittion thru the ER then.  I was totally for it!  I needed the time to not be throwing everything together for the kids for a week's worth of clothes and getting my things also.  I will be prepared for next week for the kids for whatever is to happen.

Today is the first of many more miracles to come:).  Thank you to all  of you who have been praying for me!  Prayer does make the difference and is the key to opening up the miracle that is about to unfold. ;)  God is so good to me-even if I would have had to go to Chicago.  I am in His hands and He has never left me.  I am a very blessed person! :)

Crazy Week!!

What a crazy week it has been, to say the least.  I'm so thankful for the Lord and for His strength!

I had an appointment with the orthopedics doctor on Tuesday to follow up with the hip pain and make sure that they are not getting worse.  They are the same as before and not getting any worse, so thank the Lord for that!  For the pain, I will follow up with the Rheumatologist in Chicago.  I see him in September.

On Wednesday, I saw the surgeon at the University of Illinois at Chicago who had put my gastric pacemaker in, all due to a piece of metal that came out of my g-tube (stomach) back on August 9th.  All is well though with the piece of metal.  It was an endo clip that they had put in when I had my scope in May for the J-tube to be put back.  I had a tear in my esophagus and they had used it to help it heal.  AMAZING!  Glad it wasn't a piece of the pacemaker or that the metal clip didn't damage my stomach or my g-tube.  THANK YOU, LORD, for the little and BIG things You do! :)

I had some issues going on Wednesday with some pretty bad stomach cramps, so while I was in Chicago I made a phone call to the he other hospital (University of Chicago), where my GI specialist is, to let them know what was going on.  They suggested I go to their ER or home ER to be checked out and admitted to see what was the problem.  I chose to go back to my hospital.  We had the kiddos with us on this trip since school starts next week and we were wanting to make it an extra special time.  Well....Daddy took care of it being special for them with a trip to Sonic Drive-in  and still got me home as quickly as possible.  We dropped kids off and went to the ER.  I was admitted and the following day had a scope done which revealed I had an intestinal infection. :(  Not fun, but grateful it wasn't anything worse and the symptoms were not worse.  Much to be thankful for and had wonderful care from the staff.

But there is no place like home and I asked Friday morning if it would be possible for me to go home.  I was given the green light and by 6:30 that night I was at home. :)  I am so glad to be back in my own surroundings and with my FAMILY! :)  Miss my kiddos so much when I'm in the hospital.  So grateful for God blessing me with THE BEST HUSBAND!  He had his hands full with trying to be with me and getting kids dispersed and house keeping and his job and the list goes on.  Not once does he complain!  Thankful for some nurses helping him also with making sure he was fed.  Just when he would be getting close to leaving to get a bite of something, they would come with a drink and some food.  I am blessed from God with such a beautiful family!  God is better to me than I ever deserve.  I count my blessings!!!!

I had a special "Mommy Moment" this morning with Kailey.  She came in this morning and cuddled and snuggled with me.  Talk about making your heart melt.  Can't help but take it all in.  What a time it was and we both needed it.

It's coming upon us all to fast - school!  I can't believe it is already here on Tuesday.  We still need to put Kelsey's school work on the laptop though.  It won't be hard to do, just want it ready by Tuesday so she is starting when the others do.  Back packs are ready and I am not. I miss my kids while they are not here. We have made a lot of wonderful memories over the summer and had a lot of fun. I am so thankful I had a chance to be able to be a part of it with them!

School time means summer is getting ready to end,but fall is just around the corner.  I LOVE FALL TIME!  The colors of the trees, s'mores and yummy caramel apples and the smell of apple cider, and snuggling up in comfy sweaters.  No, I don't eat any of the caramel apples, s'mores, or the apple cider, but it helps draw the picture. ;)

I am wanting to do something extra special with the kids on Monday.  I wanted to do it over the summer and I'm sure we have but I want to do it again.  I want to go out of my way with the kids and find a stranger and make their day.  Not sure what we'll do because I want them to put their ideas in on it as well.  Just want to make someone's day a better one! :)   I am so thankful to many of you who have done that over and over for my family.  THANK YOU!!!

I pray that all of you are doing well.

Good night.
 

Chicago Appt

Yesterday, we went to Chicago to set a date for the surgery for the full thickness biopsy.  The specailist didn't know anything about it.  The GI doctor had not dissused anything with her.  She was unable to contact my GI there with her having to be in procedures.  Long story short, she doesn't feel comfortable doing the procedure and putting me at risk of some major complications that could arise with this being done.  The GI doc feels it is necesary to do in order to make sure that there is not an underlying disorder causing me to have the Gastroparesis.   It was a bit of a wasted trip.  I will need for the 2 of them to really decide if it's worth the risk and then we'll decide from there.  Praying for God's guidance and wisdom on what to do.  But looking on the bright side, I was able to have a date day with my Prince Charming!

I was not able to get in at the University of Wisconsin.  I found this out last Friday, so when talking with the nurse at Chicago yesterday I was able to get in with a Rheumotologist there.  I have an appointment set for September 20th regarding all the bone pain and severe muscle cramps.

In 2 weeks, the kids start back up.  Book bags are ready, Kelsey's program came in and just need to install it in the computer.  Hard to believe that she is already starting 6th grade!  Yikes!  She is growing into a beautiful young lady (QUICKLY).  So thankful for my precious children.  Not planning too much with them this week.  Just relaxing and getting some extra snuggle and cuddle time in.  ;)

So glad I have a Heavenly Father who cares and understands.  He is my peace, joy, strength and my healer. I am greatful that I can call upon HIM anytime, and at the mention of HIS precious name he is right there with me.  What a privilege it is to be a daughter of the King.  He is so good to me.  I am blessed.