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Archive for September, 2013

A Week of Miracles!

Let me answer the first question, yes, we are still in the hospital, BUT GOD has done some amazing miracles this week! The miracles began when Lydia slept through the night!!! ūüôā

Our week started off with Lydia spiking a temp Sunday night when they increased a particular med.  This is par for the course; however, it gave the doctors what they needed to do a CT Scan.  They came in first thing to let us know they scheduled it and they would start Lydia drinking the yucky stuff that morning.  We did school work and to finish the last of the 24 ounces we played SkipBo.

Miracle #1 She did not gag or throw up one time!!!   Thank you Jesus!

Miracle #2 The CT Scan came back negative!!! ¬†They found a little build up on her small intestine but NO Graft verses Host Disease and NO virus!!! ¬†ūüôā

Miracle #3 ALL other viral tests have come back negative!!! ¬†ūüôā

Wednesday night God gave me a different way to pray. ¬†I had been praying for the doctors to get a clue and make some changes in Lydia’s medications. ¬†She was clear by the 3rd day we had been checked in. But the rules changed so we could not be released. ¬†Before we would be discharged when she went 48 hours without running a temperature. ¬†But since she was still having diarrhea they couldn’t figure out what was causing it. ¬†I tried to give them the answer but I am just her Mom who lives with her 24/7 and Mama just knows because she prays. ¬†Every Thursday when they give her this anti-viral med she has diarrhea for the next 4 days. ¬†And when she is admitted into the hospital because of a fever they immediately put her on two very strong antibiotics. ¬†Well, I don’t know about you and your children but all five of mine have diarrhea when they have been on amoxacillan one day so I think it would be save to say that outside of a miracle she can’t possibly have solid poop until she is off the anti viral and the antibiotics. ¬†I understand ¬†they have to be cautious but this is a little ridiculous. ¬†That is when I battled feeling like we were in a prison we couldn’t get out of. ¬†Everything stacked against us. ¬†They could find anything wrong but weren’t going to let us go either. ¬†Where is the common sense? ¬†So I have to pray for them to have wisdom and for Lydia to withstand the demands upon her physically and mentally. ¬†We have now been here 19 days and no test has revealed anything of substance or cause. ¬†The doctors are obviously stumped and in fear that they aren’t catching something. ¬†So I pray they do not make decisions based on fear. ¬†This vicious cycle of antibiotics is a contributor to Lydia’s diarrhea and it will take a miracle for her to have solid poop while on it.

Odd how so many doctors don’t believe in miracles or intervention from God yet set impossible goals that need God’s intervention to happen. ¬†The next vicious cycle that prevents Lydia from eating, absorbing pills, and having solid poop is the steroid and the counter med of the steroid. ¬†She gets a steroid that causes ulcers so they give her a medicine that counters the steroid, however, this med suppresses her appetite!!! ¬†It illuminates the stomach fluids so she has nothing in her stomach for it to do its job in the digestion process. ¬†This is why she threw up Campbell’s Chicken Noodle Soup 12 hours after she ate it. ¬†There was no stink because there was no acid build up in her stomach. ¬†The next day she threw up 8 hours after eating something and I had the confirmation I needed. ¬†I asked the doctor to consider going down on the steroid so they could give her a smaller dose of the suppression med. ¬†The doctor had to think about this but did agreed to at least less the steroid. ¬†Since then Lydia has not thrown up her food and has been courageous in trying to eat a few bites.

Miracle #4 Today, Friday, she ate at least 7 bites 5 times; 9am-Noon-3pm-6pm-9pm.!!! ¬†Thank you Jesus! ūüôā

Miracle #5 Since then she has also started gaining weight and there is less volume of diarrhea!!! ¬†ūüôā

The final vicious cycle that needed a miracle was the anti-virus med given every Thursday. ¬†It strikes hard against everything in her blood and another med that she gets whose sole purpose is to protect the body and the transplant cell from fighting against each other (prevents Graft Versus Host Disease). ¬†When it causes the “protection” med to drop she receives a huge dose to bring it back up. ¬†However, the drastic increase was causing her to have allergic reactions of a temperature, swelling and burning on different parts of her body for a couple of days, drop in energy level, and loss of appetite! ¬† Again, another vicious cycle. ¬†Outside of a miracle how will we ever get out of here! ¬†A temp causes the tests to start all over again.

I understand why they have to run the tests. ¬†If Lydia should get a major case of Graft Versus Host Disease or if she gets sick she could become terminal but sometimes we just have to recognized the meds “are” the cause of the reactions and fluctuating blood cells. ¬†Any small window of sickness or disease could be detrimental. ¬†But what they want to see, regular poop and stable blood work can’t happen outside of a miracle because of the way the meds affect her body. ¬†So again, I am amazed at the lack of common sense and belief in God’s ability to intervene in a miraculous way.

Tuesday night I was praying and God reminded me of the devotional Lydia and I are reading. ¬†It had talked about finding the place for the piece you don’t even think belongs in the puzzle. ¬†I asked God to reveal to me where the puzzle piece goes so Lydia can walk in the fullness of her complete healing. ¬†When that one piece is positioned in its place everything else will fall into place.

The next night I finally realized I had played the fool.  Finally, God got through to me Wednesday night.  The next day Lydia would be getting the anti-viral med and I would watch her go through the vicious cycle again.  Last night I was thinking how what has been going on has been like the movie Groundhog Day.  He keeps reliving the day until he gets it right.  Well, I finally got it right.  The doctors were not going to listen but God had shown me the three vicious cycles that were never going to produce the results they were looking for, they would only weakening her body, decrease her ability to eat and hold it down and why her body was not gaining weight.  I tried to work with the doctors to let them know the cycles of how the meds affected Lydia but God intervened and I realized why He revealed the three vicious cycles that were working against her complete recovery.

Wednesday night the veil was pull and Mama took a stand against the side affects of the ant-virus med.  I declared it would not cause her blood levels to plummet nor a drop in the other med.

Miracle # 6 Thursday flew by, Lydia did eat twice and her blood levels remained steady, they dropped a little but not severely.

However, the other med had dropped but not out of the safe zone, so they were going to increase it as a precaution.  I took a stand Thursday night over the affects of the med. they were increasing.  By the grace of God she would not get a temperature, she would not have the swelling and red splotches on her, and she would not have the unbearable burning on her hands and feet.

Miracle #7 God came through!!!! ¬†ūüôā ¬†Even though this med was increased she has had NO horrible side affects!!!

Obviously we were hoping to get discharged. ¬†All tests had come back negative even the virus that she had been given the anti-viral med for, the meds they gave her did not cause another temperature, and her diarrhea was less. ¬†But discharge was not even a thought for this week. ¬†They still need to see Lydia eating regularly and “normal” ¬†poop. ¬†Following the negative results of the CT Scan, they had started another antibiotic for the “little” build up on her small intestine as a precaution. ¬†And this keeps us in the hospital until next Thursday. ¬†With no temperature or viruses popping up she will be discharged Thursday, October 3rd.

Here is the revelation God shared tonight, I believe it is the placement of the puzzle piece we are holding…pray for her blood to be in the sweet spot. ¬†Those of you who have played ball or golf you know what a sweet spot is. ¬†When you hit the ball in the sweet spot it can only be SWEET! ¬†Your eyes are dazzled with where the ball is headed! ¬†I believe is it time to pray for Lydia’s blood levels to find the sweet spot and remain there, steady, balanced, and working for her perfect healing. ¬†When her blood balances out EVERYTHING will be taken care of! ¬†She will eat, she will have energy, she will have an immune system. ¬†She will no longer be immune system compromised. ¬†She will not return back to the hospital and appointments will be further and further apart. ¬†She will be able to play and live life again as a 7 year old courageous girl!

I ask that you join us in praying that her blood and the meds they give her find the sweet spot, working for her good as we walk out of this fire!!!

So glad I finally “got it” and for the awesome miracle power of my God!! ūüôā ¬†Even though we remain in the hospital we are celebrating every victory!

Veridee

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Since Lydia had a temperature when we went to the hospital clinic to get her bone marrow aspirate and lumbar puncture, they couldn’t follow through with the procedure but had to admit her. ¬†They coupled it with the G I scope and biopsy. ¬†That morning they brought the same papers they always do. ¬†However, when they did the 30 day aspirate and puncture I did not stay alert and they allowed someone other than the attending doctor to do the procedures. ¬†I understand this is a teaching hospital but South Carolina does not have another hospital that does bone marrow transplants. ¬†Therefore, we should have a choice as to who does procedures on Lydia.

When we came to here the senior doctor told us that only people who had done a 1,000 aspirates and lumbar punctures would be giving them to Lydia.  In June we found out this was not the case.  A new face came in the room right before the procedure.  There were no other doctors in the room so Scott asked the resident if they were doing the procedure today.  She said no.  Then the attending doctor came in and said she would have to sign after her on the paperwork.  After Lydia fell asleep under anesthetics we left the room.  In the waiting room I told him what the attending had said to the resident.  Scott was more than upset.  He had been lied to.  He left the waiting room and stood outside the door where the procedure was taking place.  Moments later the door opened and the attending argued with him that he had signed a paper that let anyone do the procedure.  She went and showed him the paperwork.  Then Scott signed a paper that only attending doctors could do procedures on Lydia.  That was the first time Lydia had really hurt from the procedure and bleed a lot.

In August I wasn’t even thinking. ¬†I thought they would honor the what Scott had signed. ¬†I signed allowing the procedure; however at the bottom just before the signature line they have a couple of lines so I wrote on there that we did not want anyone but the attending doctor to do the procedure. ¬†But behind closed doors they can do anything. ¬†All I know is that when Lydia woke up she was in excruciating pain like she had never had before. ¬†They had to give her two complete doses of morphine and she still was uncomfortable. ¬†When we moved her out of the bed I noticed her bandage was not just a band aide but a bandage filled with blood! ¬†This had never happened before. ¬†She has had this done countless times and never had a bandage, many times they didn’t even put anything on it.

When the resident came in with papers for me to sign on Friday to do the bone marrow aspirate and lumbar puncture I wrote at the bottom and told her that I would not allow anyone but the attending doctor do the procedure.  She said she would be doing it.  I explained that we had been told that no one would be doing thing other than someone who had done it a 1,000 times.  Now maybe the senior doctor was fabricating the numbers, but that is what we were told.

There was just this feeling in me, I would call it the Holy Spirit, telling me that I had better talk to person who mediates between parent and doctor on situations. ¬†So I asked to have her paged. ¬†She arrived just as Lydia and I were being wheeled off. ¬†She leaned around the corner and told me she would talk to me afterward. ¬†Afterward would be too late. ¬†Afterward, she wouldn’t be able to undo what had already been done. ¬†I knew if I didn’t say something now it would be too late. ¬†I told her I signed the paper for the procedure stating only the attending doctor to do the procedure. ¬†I asked her to please make sure this got honored.

While we were waiting for all the procedures to happen I got a talking to by the attending doctor with the resident and the mediator. ¬†In the conversation the doctor told me she didn’t even have to be in the room while the procedure was going on, only somewhere in the building! ¬†Needless to say, I was astonished! ¬†What would happen if something really went wrong?! ¬†They continued to plead their case which only gave me more confidence to not be run over in this situation. ¬†It was settled in my mind, Lydia didn’t need this procedure. ¬†It was only a test NOT a treatment. ¬†She said the hospital was exempt from patients being able to chose their doctor because they were a teaching hospital. ¬†So I did the only thing I could do. ¬†“That’s okay, we don’t have to do this procedure then.”

All three left the room and then the mediator returned moments later. ¬†She didn’t have a leg to stand on with me because the most I had ever heard from her is one hi. ¬†She proceeded to talk to me about how important this was. ¬†And I let her talk. ¬†She told me how the residents have their doctorate degrees, two of them at this point and could open their own practice if they wanted but they chose to continue their education in a specialized focus. ¬†It doesn’t matter what degree anybody has in any field. ¬†I have learned their is a huge difference between learning about something in the classroom and actually being able to do it when you get out of the classroom. ¬†I was so at ease I think she thought I had changed my mind but when she was done I politely said, “No, Lydia will not be having the procedure today. ¬†When the attending doctor doesn’t even have to be in the room we won’t allow this to take place with our daughter.” ¬†She said ok and left.

I didn’t think it would be over but they didn’t approach me again. A thank you Jesus and a sigh. ¬†After we got settled into the room the nurse came in and said she was taking blood to send off for the cell test. ¬†This is when I learned that they don’t have to do the bone marrow aspirate to find out the blood count, how much is Lydia’s original blood and how much is from the donor! ¬†I actually chuckled to myself. ¬†Unbelievable! ¬†There was another way and it was as simple as getting blood from her access. ¬†Talk about saving money!!! ¬†So she never needed the bone marrow aspirate or the lumbar puncture that was all for practice!!!!!! ¬†Outrageous!

Thank you Jesus for guiding me to stand up for my daughter!  She is not a pin cushion or a ginny pig.  She is a child of the most high God and that makes her a princess protected by His love and empowered with His authority.

We celebrate today that the blood test reveals that Lydia is completely 100% donor cells!!!  Exciting news.  The donor blood has grafted to her body and her body has received it!!!  Now, somebody ought to be up dancing with me!!!  It is a great time to celebrate how great our God is!

We are still praying for digestive system to be completely healed and appetite to return.  These are extremely necessary.  We are more than 70 days from transplant and this is highly unusual for a transplant patient to not be eating.  She had one week of eating when she was off of a anti-viral med but when she got put back on she stopped eating again.  When they increased another med, she began throwing up about 10 minutes after taking it.  We are so appreciative of your prayers!!!  God is moving one mountain out of the way as a time.

I thank God for giving me the courage to stand up for my daughter and providing another way!

Time to dance on the mountain that has become a plain!  And looking with great expectation as God takes down the next mountain!

Veridee

 

 

 

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So Who Has the Final Say?

We find ourselves in situations that make you wonder, “Who is in control here? ¬†Who has the final say?” ¬†One of our biggest frustrations is when one doctor tells you one thing and the next one that walks in the door tells you the complete opposite. ¬†“People, you are not building my confidence in your care for my daughter.” ¬†Thankfully this experience is cultivating in me deeper trust in God. ¬†He is the one in control. ¬†It doesn’t matter what one doctor said. ¬†When I wait on the Lord, He moves mountains that stand in our way. ¬† If God wants what the doctor has said changed, He brings in another doctor to tell you His plan. ¬†If not then we go with it. ¬†I can’t do anything but my God can do amazing things that no eye has seen, no ear has heard. ¬†He really is all that! ¬†ūüôā

Many time we go through life with our days being all a fluster because we have unknowingly given someone else the final say to our day. ¬†A week ago the senior doctor told me, “Plan for a long stay, this is either a virus that will have to be treated for 5-7 days in the hospital or Graft Verse Host Disease which will be longer.” ¬†Later that day she sent word that the G I Scope was scheduled for Wednesday. ¬†But later it was moved to Friday. ¬†This is where you just can’t let someone ruin your day because they tell you one thing and then, “We have to move Lydia’s scope to Friday?” ¬†Sure I could have responded with frustration or anger but if I had responded that way I would not have been in the place of peace God had provided for me when she spiked the temperature in the hospital clinic.

Most of you know I am not generally a laid back person. ¬†I am a doer and a goer. ¬†I don’t like to be trapped, confined, or held back. ¬†But when God gives you peace, you can handle the things that totally unnerve you. ¬†If I were to act on my own I would be blaming everyone for everything and frustrated beyond words every day. ¬†This is a horrible situation and I would be second behind Lydia saying, “I want out!” ¬†Honestly, it would be easier if the staff of doctors had their act together but I have learned no ones word is final. ¬†Any decision can change in a moment.

So when they said the G I scope and biopsy had been changed it made me feel better…”Why?”, you ask. ¬†Because if it was urgent it would have stayed on Wednesday. ¬†I refuse to be a Yo-Yo with anybody but God in control of when I go up, down, in and out, or around the world. ¬†God has given me something that is totally amazing. ¬†It is a supernatural power of patience. ¬†WAY TOO MANY times I could have had my emotions yanked during this stay, but the wonderful power of peace that my God offers is empowering to trust that He is working all things out for our good.

There was one day I was being rattled and God placed people around me who He had put on alert to pray. ¬†He had given me the ability to remain calm in the middle of the hurricane because I talked with others who listened and encouraged me to respond God’s way. ¬†The storm settled and my confidence was restored as I pressed in immediately with drastic measures in the heavenly realm. ¬†This was a battle that would not be won through an argument with the doctors but through prayer. ¬†Hours later the senior doctor came, we talked, she reversed the former decision but the damage had already been done to Lydia. ¬†I had just told the doctor two days prior how difficult it had been working with all the different doctors because of the inconsistency and here was the perfect example.

Thankfully, we made it to Friday where another battle would take place. ¬†However, because the peace and justice of God so filled me I was able to take a stand against something that would have hurt Lydia. ¬†She was finally sent for the G I scope and biopsy. ¬†She was so tired. ¬†She had not had a good nights sleep since Sunday. ¬†The procedure went well. ¬†Within 10 minutes the doctor handed me the results and pictures of the scope. ¬†“The scope is not showing there to be any virus or Graft verses Host Disease. ¬†You will get the biopsy report tomorrow.”

“Tomorrow, really? ¬†Tomorrow is Saturday,” I responded. ¬†He preceded to assure me I would have the results because they have people who work the weekends.

Saturday afternoon the doctor on the floor said the pathologist wanted to another person look at it so I would not have the results until Monday. ¬†Again, this would have been a prime time to get frustrated but honestly, I was overjoyed. ¬†You ask, “Why?” ¬†Because, once again if he could have easily identified anything important meds would have been started immediately. ¬†So, we pressed in again through prayer. ¬†“God, if there is something there let them see it, identify what it is, and know exactly what to do, but if there isn’t anything there, don’t let them give Lydia anything just to make themselves feel better. ¬†God direct them, speak to them even if they don’t know You, You can speak to them just like you did with Nebuchadezzar and many others who were opposed to You in the Bible. ¬†You can speak to these doctors. ¬†Direct the plan You have for Lydia, the one that will heal her completely.”

Monday afternoon the doctor on the floor said, “The pathologist did not find anything but our doctor is going to go down and look tomorrow.” ¬†Once again supernatural peace from God. ¬†I had nothing to worry about. This was completely in God’s hands, if there was something God would give them the solution for treatment if there wasn’t anything God would not allow them to treat her.

NOTHING was found!!! ¬†There is no Graft verses Host Disease. ¬†There is no virus of any kind. ¬†They ran every test they had for anything. ¬†But they couldn’t find anything! ¬†God is so very good. ¬†This truly represents the verse,

Have you not known? Have your not heard? The everlasting God, the LORD, the Creator of the ends of the earth, neither faints nor is weary, His understanding is unreachable.  He gives power to the weak, and to those who have no might He increases strength.  Even the youths shall faint and be weary and the young men shall utterly fall BUT those who wait on the LORD shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.  Isaiah 40:28-31

“But those who wait on the LORD,” we preserver holding the belief that He will act on our behalf, He will strengthen us. ¬† We wait on the LORD, and when we do grow faint we know we can turn to those who are praying with us and stand, believing for Lydia’s complete healing. ¬†God is so very faithful and He has given us so many good people to encourage us. ¬†Thank you Jesus!

They took Lydia off antibiotics today. ¬†They are planning to switch her meds from I V back to pills to try and get the levels right. ¬†They really have no reason to keep us. ¬†Policy: if she has no fever for 48 hours we get sent home, but they are stumped. ¬†She continues to have lots of loose stools and sometimes doesn’t eat all day. ¬†However, they won’t come in and tell her she has to eat to leave. ¬†Even today the doctor said she could eat if she wanted to.

This week, a friend confirmed what I had been telling the doctors, the “allergic reaction” and fever Lydia was having was because of too high of an increased dose of med. ¬†I didn’t need to wait until I got the blood reports the next morning to know what was going on. ¬†We had this before. ¬†But all I can do is pray wisdom for the doctors because they don’t want a Mom telling them what the problem is. ¬†Another friend confirmed that they are giving her a med that causes everything to taste horrible. ¬†So it doesn’t matter what you give Lydia to eat, she doesn’t want it. ¬†Think of the worst food you have ever had and then think of that taste being there for everything you eat. ¬†Who would eat!?! ¬†I think I see the next weight loss pill.

They want to keep us for the full 2 weeks, no reason that they are telling us, just because.  Once the pills are balanced in her body we should be able to go.  Maybe they will let us out if once this is done.  Maybe they are thinking it will take 5 days to balance out her meds.  Maybe another doctor will come in and tell us something different tomorrow.

We need a miracle:

1. She needs to eat but now we need to pray against the side affects of this med. ¬†I have been praying over the meds that they do what benefits Lydia’s body to be restored and healthy and against all side affects that would cause her harm in any way.

2. Lydia also needs complete healing to her body, the one thing we do know from all this, her body is not absorbing what it needs through the digestive system.  Even the meds are being passed through without absorption.  When the digestive system is restored she will absorb the meds and food will be digested properly.

I am so thankful that God has the final say! ūüôā

Veridee

 

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One Hour and Counting…

Yep, that is what Lydia has had tonight as we head out of the 2 am hour and into the 3 am hour.  As far as sleep goes, this week has been disastrous!  Never putting two hours of sleep together in the night time.

Monday, we were ambushed when we came into the hospital clinic expecting routine blood work with bone marrow aspirate and lumbar test, Lydia’s temperature spiked and we were admitted into the hospital. ¬†At this point you just know what is about to happen, they don’t even have to tell you the bad news. ¬†Anything over 100.4 gets you a room for nothing less than 48 hours once temp is down. ¬†I was completely caught unprepared. ¬†Scott had taken Selah and Charis to Orangeburg with him so I was going to have to leave Lydia in the hospital while I went to get our things. ¬†When they said they were going to give her benedryl, I planned my get-away.

After getting settled, I asked God what Scriptures we were to post on the doors this time, “Do we use the ones from before or do You have new ones?” ¬†It hadn’t even bee 5 seconds asking the question that a dear friend text me a new verse! ¬† This stay just seemed different in an unusual kind of way. ¬†I have learned the hard way, there is no way of knowing when you are going to get out. ¬†Anything can change in a day and you may remain for another few weeks. ¬†The doctor who admitted us said to plan for a long stay. We weren’t going to be able to leave even if Lydia’s temp never flared again. ¬† We were there until she had G I scope and biopsy, they knew the results and the treatment plan had been underway for 5-7 days. ¬†The G I was originally scheduled for Wed and moved to Fri. ¬†My husband encouragement me with:

“I WILL lift up my eyes to the hills from whence comes my help? ¬†My help comes from the LORD, who made heave and earth. ¬†He will not allow my foot to be moved, He who keeps you will not slumber. ¬†Behold, He who keeps Lydia shall neither slumber nor sleep. ¬†The LORD is your keeper. ¬†The LORD is your shade at your right hand. ¬†The sun shall not strike you by day, nor the moon by night. ¬†The LORD shall preserve you from all evil; He shall preserve your soul. ¬†The LORD shall preserve your going out and your coming in from this time forth, and even forevermore.” ¬†Psalm 121

This week has been…well, I am so glad people are praying for the doctors and nurses because I can’t imagine what it would be like if it had been any worse. ¬†I will spare you the details of this weeks play-by-play. ¬†Frustration mounted when the doctors couldn’t get their act together. ¬†I had to take a walk or I wasn’t going to be very Christ-like. ¬†However, it was a huge power surge when I would receive a text from people praying at the time when things were going down. ¬†God had my back with the mighty warriors who heeded the signals of the Holy Spirit to pray for us.

Sleep was stolen from us from the first night. ¬†The machine beeped every 15 minutes with “air-in-line”. ¬†Needless to say, no sleep. ¬†So Tuesday Lydia was sluggish and just wanted to hide so she could sleep but sleep did not come until everyone left us alone. ¬†We both slept from 4-7 that afternoon. ¬†Now I am so thankful for because we didn’t know we weren’t going to have another time when we could put 2 hours consecutively for sleep for the remainder of the week. ¬† ¬†This is why I write, One hour and counting…and it is only by the hand of God she has slept a complete hour because the beeps have gone up twice, her temp is spiking again, and meds have been changed during this hour. ¬†To remain asleep through all of this…can only be God. ¬†Her body is weak and worn out.

Friday morning Lydia’s temp spiked again which almost canceled her G I upper and lower scope and biopsy…BUT GOD! ¬†Thankfully, the initial report of the scope shows no graft verses host disease. ¬†The doctor assured me without-a-doubt that I would have the results by today (Saturday), but to no avail. ¬†The person looking at the biopsy is going to wait until Monday until someone else can take a look. ¬†Personally, I feel good about this. ¬†We have been praying they would not be guessing but know if there is any problem and for the doctors to know exactly how to treat the problem. ¬†If there is no problem then there doesn’t need to be any unnecessary treatment. ¬†Lydia’s body needs a rest so it can heal. ¬†She has lost 2 more pounds while in the hospital. ¬†It is time for her to get rest and restored. ¬†She needs heavenly intervention for this.

God has continues to be our strength.

Veridee

p.s. Lydia has set a record, 3 hours and 15 minutes and counting! ¬†Thank you God!!! ¬†I stayed up and prayed over her through her first hour and God has multiplied her sleep! ūüôā

 

 

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That is what I was facing tonight. ¬†As Scott and I began to pray, my chest got tight and I sputtered out the words as tears nearly sizzled as they trickled down my hot face. ¬†To hold Lydia is to feel like you are going to crush her. ¬†So I must be strong enough to face whatever comes when coaxing, encouraging, and stubbornly making her eat. ¬†Tonight after a week of talking her through taking bite after bite she exploded with resistance. ¬†She gripped the chair, turned away from me, and shouted, “No, no! ¬†I will not eat! I do not trust you! ¬†I am going to kick you!” ¬†I could not let my feelings get in the way. ¬†Thankfully, this was only the 3rd time she had uncharacteristically screamed at me and told me no in the last 8 weeks. ¬†I know it was one of the medicines talking mixed with fear of throwing up AGAIN. ¬†When she does this I don’t want to push her away or quit or leave. ¬†I want to hold her close and let my love flow from the embrace into her.

I picked her up out of the chair and held her close. ¬†My heart ached for her. ¬†I couldn’t promise her she wouldn’t throw up again. ¬†I couldn’t tell her she wasn’t going to stay up all night on the potty. ¬†All I could do was hold her. ¬†Then she burst into tears, “Mommy I am so sorry for yelling at you. ¬†I am so sorry for kicking you. ¬†Mommy can you forgive me? ¬†I am so sorry.” ¬†I held her for a moment longer and then positioned her so she could see my eyes, “Yes, honey, I forgive you. ¬†I love you.” ¬†And then embraced her again until I felt she would try again to take a bite.

I was reminded of something I learned years ago, until a child or teen is making the right decisions they don’t get to make the decision. ¬†The only way they are going to learn how to make the right decision is if they understand what is right about the decision, the benefit, the blessing it opens in their life. ¬†Lydia was not making the right decision. ¬†She had pretended to be asleep on the couch so I would not call her over to eat. ¬†I had to have enough of Jesus in me so I could hold on to her and patiently encourage her to take a bite. ¬†Holding her only gave me the resolve to remain focused in talking her through eating 7 baby bites. ¬†Feeling the lack of substance in her muscles and the wrinkle of her skin broke my heart as I sat her down so we could start the process of eating.

Yesterday, Lydia nearly got checked back into the hospital. ¬†While Scott looked for a parking space she said, “Go slow Daddy, the turns make me dizzy.” ¬†She barely made it to her room when her stomach let loose. ¬†The doctors contemplated admitting her but her blood work came back good so they didn’t have a reason to keep her other than she felt miserable and needed rest. ¬†(Thankfully we all know you get more rest at home, so I am glad they did not admit her.) ¬†She came home and slept until dinner.

Once again, she hadn’t had anything to eat until the evening meal because she was at the hospital getting her anti-viral med and blood work done. ¬†She doesn’t eat on appointment days because there is not enough time to slowly walk her through each bite. ¬†For dinner she had 3 bites to go and the uncontrollable convulsions started and stopped when there was nothing left in her stomach. ¬†Pills swimming on her plate. ¬†I hugged her and held her. ¬†She had done well. ¬†We would try again tomorrow (today). There is nothing else she can do when the convulsions start. ¬†But I know that when it is over…it is over. ¬†I didn’t try to cram more down her, I just held her close and told her how proud I was of her for trying to eat. ¬†Taking meds half way through eating was not going to work. ¬†We would have to go another route for the meds.

Last night Scott and I prayed but even after all were asleep I felt compelled to go lay hands and pray for Lydia, Selah, and Charis. ¬†This throwing up is effecting Selah and Charis and so is the resistance Lydia is giving when it is time to eat. ¬†In the past, if they didn’t want what was prepared they were allowed to leave the table and eat at the next meal because ‘Mama isn’t a short order cook’. ¬†This week Selah and Charis have shown signs of resisting what is prepared, saying they don’t like it before they even take a bite. ¬†Children go through this, but fighting the eating battle with more than one child, especially when it is so incredibly important for one child to eat, stretches me to get the strength immediately from God. ¬†Brings a whole new level to saying “Grace” before eating, now I am saying it after every bite and before the next one! One to thank God Lydia took the bite and one for me to remain calm and encouraging for the next bite.

“GRACE! GRACE!!”¬†

So He answered and said to me: “This is the work of the LORD to the Hands: Not by might nor by power, but by My Spirit,’ Says the LORD of hosts. (7) Who are you, O great Mountain? Before the Hands you shall come a plain! And he shall bring forth the capstone with shouts of “Grace, grace to it!”‘” Zechariah 4:6,7

Today Lydia had a yogurt for lunch. ¬†She took the first 3 bites herself and the rest I had to feed her as I talked her through it and let her hold my hand for strength. ¬†She has totally convinced herself that EVERYTHING tastes bad and if that isn’t enough she believes EVERYTHING will cause her to throw up. ¬†You know how it is when you have had the flu and NOTHING sounds good, even to smell food makes you run to the bathroom and you are saying, “just give me a dark room with a hole to crawl in until this is over.” ¬†Well think of that measured to the tune of 65 days. ¬†This is why her skin hangs on her. ¬†This is why her arms hang loosely through the circle of my thumb and pointer finger. ¬†This is why she has little strength to make it up the stairs or even walk into the hospital for her appointment.

Prayer warriors, we have victory over Leukemia but we must not lose as we make sure we pray for complete recovery. ¬†Join us in praying for Lydia to return from the war she was been in. ¬†Her mind is filled with lies. ¬†She is afraid to take medicine because she will throw up. ¬†She is afraid to eat because she doesn’t want to throw up. ¬†She wants to sleep all day long, hiding in her hole just wishing for it to all go away. ¬†I can’t stress enough how important it is for her to start eating regularly. ¬†The doctors do not understand what is wrong, why she is not bouncing back. ¬†They expected her to start eating 6 weeks ago. ¬†When that didn’t happen, they projected she would eat when she got out of the hospital.

Sadly, I think the key lies in something the doctors keep saying over and over again. ¬†When Scott or I ask a question to know what is going on or what we can do their first response, “Everyone has to have this..” ¬†First of all, that is not true. ¬†Most make go through it or have to take it but not EVERYONE! ¬†EArlier this week I was telling Lydia she could get off the IV fluids at night and all the white pills when she starts eating and drinking consistently. ¬†She responded, “No, everyone has to take this.” ¬†I told her that was not true. ¬†And the more I thought about it the madder I got. ¬†We teach our children that they have to have the courage to stand against the “Because every one else is/does/has…” in order to do what is right and here the doctors, not realizing what they are saying in their own insecurity of explaining what they are finding and prescribing, are teaching my daughter to embrace, ‘because everyone else does.’

Mama has a problem. ¬†This is not going to fly anymore. ¬†They will explain the answer and we will ask specific questions so Lydia knows this is not to last until…with no end in sight. ¬†She needs the truth and the truth will set her free. ¬†I have yet to hear the doctors tell her how important it is to drink and eat to get her strength back. ¬†They just keep saying it will come and prescribe another med to “make” her eat. ¬†So Lydia needs our prayers for her to eat, drink, and live life to the fullest.

John 10:10 Jesus is speaking

“The thief does not come except to steal, and to kill, and to destroy. ¬†I have come that they may have life, and that they may have it more abundantly.”

Jesus died that we may live life to the fullest. ¬†“May” implies that it is available but we have to decide if we want what Jesus died to give us. ¬†That includes Lydia’s appetite to return, for her to be up and playing with her sisters, for her to wiz through school, and get back involved in activities.

Please join us in prayer for appetite to return, her stomach to settle, the virus to be gone completely, and life to be lived again for Lydia.

When you just can’t stand any longer…you go to your knees!

Filled In His Presence,

Veridee

 

 

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