Thursday was an incredible day

9:45 PM Thursday- I will try to capture the events of the day today but so much has happened that I may have trouble keeping it straight.  That on top of the fact that I haven't really slept for about 40 hours may give some room for grace as you read this post.

As I mentioned previously I had a call from Dr. C around 2:30 AM and he told me everything went very well. He also told me where to wait for someone to meet me to visit Belinda. Around 4:30 this morning I was allowed into her room. To my surprise she was awake and communicating. The breathing tube had already been removed and she was very stable. She was in a lot of pain but her medical team was always on top of it and helping her to mange it. (We have been very impressed with every staff member we have encountered. Hopkins really excels in excellence when it comes to patient needs.)

I was able to be with Belinda throughout the day and she made great progress all day. At this point of the night I would estimate that she is 24 hours ahead of schedule on her recovery plan! Today about 60% of her supply tubes were removed, I estimate that there were about 30-40 of them initially. She was able to stand up and transfer to a recliner for part of the day, and we are still hopeful that we will leave the ICU unit sometime tonight!

She is still managing a lot of pain and they have warned us that the next 48 hours are critical and may be the toughest. The team is really pleased with her progress. Tonight her BP escalated and for a brief time her kidneys quit making fluid. After a few adjustments the team appears to have her back on track. We also started integrating some of her new anti rejection meds that will be a lifelong journey for her. The next week or so will be a steep learning curve but we are confident we will adjust to our new normal.

Belinda may be ready for some visitors Friday afternoon but we ask that you call before coming and we may need to keep these visits short.  She really needs her rest at this point. We rejoice in all that has transpired on this journey and truly rest in the palm of God's hand.  We are blessed!

The Unveiling of Meg

Conference with Dr. C

At 2:00 AM I had a call from Dr. C with an update on Belinda. He said the surgery went amazingly well! He said she only needed 3 units of blood and her body was very stable. New organs are in and everything seems to be functioning at this point. He said they may even be pulling the intubation tube tonight as well!

Belinda had stated, several times through this, that her only concern was waking with the intubation tube inserted. Even with the medical team's affirmation that she wouldn't be aware of it she was still questioning that this morning.

God--in all His grace--even took care of that concern for her!

God is good! We rejoice and praise Him for His love and care for Belinda.

Please continue to pray for the donor family. We rejoice--and we mourn.

Peace & Blessings to all of our prayer partners. "For where two or three are gathered in my name, there am I among them"....or 200 or more!!

TJ's Ramblings at 1:00 AM

It is now 1:00 AM on Thursday. I sit in a waiting room with 2 other families. It is dark and rainey outside. I look over the lights of the city. A good friend has just left and I am alone to ponder--and be grateful for all that is going on, and for all of my blessings.

My thoughts have gone everywhere in the last 18 hours, and the last 2 years. This journey has been a roller coaster but God has given me a peace that passes understanding. I truly rest in His arms knowing that He loves Belinda more than I can imagine and that He wants the very best for her. I have faith that He will care for her and restore her.

I grieve for the donor family. Someday I hope they realize the impact of the gift they have given to Belinda. Someday I hope we can say thank you to them. I pray that they too will feel the peace of Christ on this journey. I trust God will soften the sting of death as they mourn their loss.

I look over the city, into the darkness, and am reminded of the darkness in our world. Like others in this waiting room, and the city, we deal with crisis points in our lives not knowing what the outcome may be. Some days can look very dark. I have sat here and reflected on this city and prayed for healing for it's residents. I recognize that we don't always have the priveledge of knowing the answers, but I pray there will be peace for everyone. 

I am reminded of a Man who knew the outcom of His journey, knew the pain He was to endure, and still was faithful to carry on. He was willing to give up His freedom so that others could live. His sacrifice provided hope.

In this journey, like all of our journeys, the pain of death must be experienced to recieve life, true life. I am thankful for the one who paid the price so we can have life--and have it abundantly! Tonight I mourn--and I celebrate. To some this will sound odd. Some day I hope all will understand. I am truly blessed!

New liver in place!

It is 12:01 Thursday morning. I just had an update from the operating room. They said the new liver is in place and they are now starting on the kidney transplant. They said Belinda is doing well. 

We praise God for the gifts and talents of the Surgical Team. We also continue to pray that He will continue to lift the team, energize them, and fill them with His wisdom. God is good!! Proverbs 3:5-6

The donor organs are a match!!!

I just kissed my girl and told her I would see her in a few days. She just went into the OR. Surgery will be about 12 hours and recovery will be another 24 hours or so until she is conscious again. Thanks for the prayers everyone! We praise God for the gifts He has given the surgical Team!

It's Time...Again

 Wednesday June 17, 8:30 AM

OK Team, God is answering prayers again! We just got another call and are headed to Hopkins for Belinda's transplant. As before; Please pray God's peace over the donor's family, we grieve with them over their loss- Pray for the Medical Team, for wisdom and endurance as this will be a very long procedure, pray that Go will guide their hands and hone their skills-Pray for Belinda, that her body will be strong and receptive to the new organs--Pray for Sara, Carly, and I that we stand strong and sense God's presence. Continually praise God as we all journey together. He is good and has provided absolutely everything we have needed! We truly rest in the palm of His hands. Proverbs 3:5-6 has been our foundation; we truly trust in Him.

Movin on up!!

Hello!

I haven't felt compelled to write for the past several months--partially because I didn't have anything new to share & partially because I've been more fatigued & uncomfortable most days so I didn't take time to write.

I recently was asked what I feel that I'm learning through all of this waiting time.  I am learning many things; however, I think I recently figured out the main lesson that God is teaching me.

As far back as I can remember, I have been a daily list maker.  It's not that I have to stick to that list--I'm usually willing to flex.  However, I use it to prioritize & focus myself so I don't ramble through my day.

During a recent message at church, we learned more about trusting God.  I questioned myself about whether I was trusting God enough through this waiting time.  Then it struck me that every day I could write "get new organs" at the top of my to do list, but I can never do anything (other than pray) to achieve that goal.  Only God knows when I'll be able to cross it off my list :)  When we are not in control of something, we need to trust someone else.

As I process this, I'm thinking of goals/desires/dreams that we can have--lose weight, get a new job, start a family, train for a marathon, etc.  Even though God ultimately would be the one who would allow us to achieve that goal (if it's in His will), there are steps that we can take toward it.  This process of waiting has no steps toward it.  After all my initial testing was complete in 2013, there was nothing else that I could do to work toward that goal.  So, God is saying "you have to TRUST ME to take care of this one.  I've got it covered."

It's stirring humbleness and submission and even more trust in me toward the One who is truly in charge.

A few days after processing this message & further releasing it to God, I got a call from my transplant coordinator.  Effective this week, I've been bumped higher on the list.  I imagine that a lot of you are thinking "I thought you were at the top of the list already".  Yes, I was; however, it's changed a little. 

Every 3 months my case is reviewed & a decision is made whether to keep me at the current level of points or grant me more points.  My coordinator said that they applied for more points & that now I'm being moved from a 31 to a 35.  She said this doesn't happen frequently in cases like mine. So, what does 35 points mean?  Previously, the search for possible donors for me were chosen from a local region around Maryland.  Now with a score of 35, they will look in a larger circle for possible donors.

She explained that the reason it is taking so long for me to get another offer for donation is the fact that they have been waiting for the perfect match for me.  Because I'm not the usual case (my liver function is still ok), they have the blessing of holding off until the perfect time.  Most others (about 99%) on the transplant list have failing livers & time is a critical factor for them.  So, they pass over me to give them the organs.  

We talked a little more & then she said "Get Ready!"  That phrase doesn't make my heart flutter as much as before.  I still get a little anxious; but as I mentioned above, there's nothing I can do to get ready--God is doing all of the preparing!

Thanks for joining us on this adventure!

Again--"For I know the plans I have for you," says the Lord.  "They are plans for good and not for disaster, to give you a future and a hope."                                                Jeremiah 29:11 

Belinda & Meg

Many blessings out of a disappointment--the rest of the story

Tuesday 2/17/15

Hello again!  Here's the rest of the story from January 24...

Our wait continued & it seemed like a really long time but the targeted 10am finally came.  However, nothing changed.  Bloodwork, chest XR & EKG were done & an IV was inserted but there was nothing indicating that I would soon go the Operating Room as planned.  The hospital staff kept checking with us to see if we needed anything--"yeah, either some food or a new kidney & liver, please!" :)   The last time that I had anything to eat or drink was about 6pm the night before.  

The hours slowly ticked by and even though we didn't openly discuss it, Todd & I were thinking the same thing:  something just didn't feel right.  The delay seemed to indicate to us that the surgery may not happen.  I remember reading in the book that I referenced earlier...sometimes we can't see God at work, but He isn't passive.  He's preparing...   I tried to remind myself of that.  Even though I had been on the waiting list since the fall of 2013, these hours in the hospital seemed to be a more difficult waiting process. 

Dr. Dagher came back & we talked some more.  He said he was still consulting with the other surgeon who was with the organs to be donated.  We discussed my medical situation in more depth & he showed us my CT scan & we took a tour through my body on film.  It was very interesting & helped me to understand why I feel like I do.  Meg sure has taken over & caused other parts to re-locate or be squished.  He said it's the opposite of being pregnant.  When a baby grows inside a woman's body, the baby starts low & then grows & pushes her other organs upward.  My liver started high (under my ribs) and has grown very large (into my pelvis).  This causes my organs & other parts to move downward.  My stomach is compressed & my intestines are relocated & not arranged like they used to be.  Therefore, it explains why I have to graze throughout the day & need to eat small quantities.  It also explains why many sitting, bending, twisting, & sleeping positions are uncomfortable for me.  I had been telling doctors for about 10 years how I had been feeling, but now it was portrayed on this CT scan.

He left us to further consult with the other surgeons & then around 2pm, he returned with a very sad demeanor.  He explained that the surgery was not going to take place. The donor had died suddenly & initially it was believed to be from an asthma attack.  However, when it was investigated further, the person had no history of asthma.  That was a "red flag" so more testing was done.  An unidentified virus was discovered so they didn't want to proceed with the donation.  They said that the donor was a perfect match so they felt it would have been a great transplant; however, I may have been left with a virus to deal with.  It wasn't worth the risk.  We were thankful for their wisdom & technology to make this decision & fully agreed.

Even though it wasn't the answer we preferred, it seemed like God was preparing us for this while we waited.  Again, that peace filled us.  We were disappointed, but found so many blessings through those 12 hours.  We gained more knowledge about the whole process so the next time will be a little more familiar.  

So, after reflecting over our hospital adventure, I'm thankful in many ways.  God always knows what we need.  As we left Johns Hopkins, the doctors & staff reminded me that I'm still at the top of the list & they will "see me soon".  I just hope that my "soon" and God's "soon" are the same.  Oh yeah, that Kairos time again!

With love & thankfulness for all of you traveling with us,

Belinda

  "Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus."
                                                                                               1 Thessalonians 5:18

Many blessings out of a disappointment--Part 2

Thursday 2/12/15

A friend arrived quickly to stay with Sara & Carly.  We're thankful for her father who drove her to our house because of the weather.  After some phone calls & final prep, we were on our way.  The road condition improved to heavy rain as we headed south.  So, it wasn't the most comfortable drive but we were safe.  Because of the family & friends supporting us, it felt like we had a car full of people traveling with us.  I never experienced a middle of the night drive to the hospital with a baby on the way, so I said this was my chance to see what that feels like.  The excitement/nervousness was definitely similar.

A friend had prayed with me over the phone before we left & I clung to that prayer.  I remember hearing her ask God for peace.  I texted & called people as we traveled.  God woke up a friend & she saw my text.  So, she stayed awake while we traveled & kept us smiling with texts sprinkled with scripture & humor.  It sure made the ride seem faster!  I was very calm, but as we made the last turn & I saw Johns Hopkins straight ahead, I could feel a nervous flutter.  I thought back to the prayer for peace & tried to breathe in some of that.

Upon arrival at the hospital, I called my transplant coordinator & she directed me to the correct place.  It was strange to walk through the hospital at 3:30am with empty hallways.  On other other visits, there was quite a lot of action.  The staff was waiting for me & directed us to the designated room.  (This hospital floor has only liver & kidney transplant patients.)  My nurse introduced herself, took some vital signs & then told us we could turn down the lights or watch tv...the scheduled time to take me to the Operating Room was 10am.  What?  6 hours later?  We had been functioning with such a sense of urgency, but all of a sudden it felt like time stood still.  

I asked her when it would be appropriate to ask my list of questions & she said "Go For It!"  So, I started my list:  which surgeon would be doing the surgery? how long would the surgery take? where were the organs at that time? where did they come from?  how long could the organs be held? what would happen between now & 10am?  etc. etc. etc.  

She said that she didn't have any info on the donor or their organs.  Between now & surgery time, they would be doing routine tests:  EKG, chest XR, bloodwork.  There are 3 surgeons on the transplant team:  1 travels to procure the organs & travel with them.  He will communicate with the surgeon that is taking care of me.  So, this time allows them to get updated info on me & continue evaluating the organs to make sure they are match for me.  I told her that I had been praying for a specific surgeon--Dr. Cameron.  She said that he wasn't scheduled to be my surgeon; however, she felt sure that I would  really like Dr. Dagher.  

Now, that I knew a little more, I started to relax.  I was encouraged to sleep but that wasn't easy.  In between technicians & other physicians (kidney doctor, anesthesiologist, etc.) coming into the room, I may have slept 15 minutes.  Even though I was calm, I was too anxious to sleep. I figured that I would soon be having at least a 10-hour nap :) .  An assistant surgeon came to talk with us, but he had a strong foreign accent & was very difficult to understand.  I could feel my inner peace slipping away.  I was thankful that I was familiar with medical terminology because otherwise I think I would have understood about 25% of what he said.  He started describing variations to the whole process that were different than what we thought.  When we expressed our concern, he said that we would be meeting with Dr. Dagher & could talk with him about it.  

Finally, Dr. Dagher came into our room.  The nurse was correct--I liked him immediately.  He had a calm, warm personality & explained everything very clearly.  I, of course, had a few more questions for him & he explained the entire process to us.  This would likely be a 10-hour procedure.  There are various theories about removing old kidneys or leaving them in.  Some of the "optional" parts of this process would depend on how my body was functioning.  They would start on the right side & remove my liver & kidney.  If I was doing well & tolerating the lengthy surgery, they would remove both of my kidneys & liver & give me new ones.  If not, they may decide to leave in my left kidney.  He asked how we felt about all of his proposals.  We agreed with everything & trusted his wisdom.  All of a sudden, I could feel myself relaxing & God's peace washing over me again.

As we waited, we had contacts from many people & we drew strength from that.  We had several offers to clear our driveway, which was a blessing.  We were later told about a group of men from our church who shoveled our driveway & our neighbor's driveway but then huddled & prayed.  Wow--that really made us smile!!  Another great example of the group of people that God has given to surround us.

So, our wait continued...I'll finish the story later.

Thanks for listening!  It helps me to be thankful all over again!

Belinda (& Meg still hanging around)

Many blessings out of a disappointment--Part 1

Wednesday 2/4/15

Thanks for following along with our test-run adventure at Hopkins!  We never felt alone & could really sense the presence of our friends & family to support us & the Holy Spirit to calm & guide us.

Many people have expressed their sadness over the cancellation of my possible transplant on the 24th.  After some time to rest & process it all, I feel very fortunate to have experienced so many blessings through those 12 hours at the hospital.  Let me recap & explain...

About 6pm on Friday evening (Jan 23), I got a call from my transplant coordinator @ Johns Hopkins saying that there was a possible match for me.  She asked 2 questions:  "how are you feeling?" (any colds/infections, etc.)  I had just been thinking about how well I had felt for the few days prior to that.  Her 2nd question was "how long would it take for you to get here, considering the current weather & forecast?"  Thankfully, we live near I83 so we didn't feel the predicted weather would be a major deterrent for us.  The roads were dry at the time that she called, but snow was on its way.  

So, I said "what's next?"  She said "just wait until the surgeon prompts me to call you."  I, of course, tried to get more information:  "approximately how soon might that be...1 hour...1 day?"  She simply said that she didn't know.  Back to the waiting game...

We prayed as a family & then Sara & Carly went back to whatever they were doing before the call.  It wasn't that they didn't care...it was just that nothing was happening at the moment because we didn't know when we would be leaving.  Meanwhile, Todd & I started processing through the list that was compiled a long time ago in preparation for this day.  I prioritized what needed to be done & then my nervous evergy allowed me to do laundry, pay bills, cleaining & other things that weren't essential but filled my time & helped me in my "nesting mode."  As the girls felt our busyness, they joined in--Sara really helped by prompting me with questions about things we may need with us or things that they needed to know about staying at home.  Some of her questions we hadn't even thought about.  They were asking some questions that we didn't have answers to, so we all just needed to trust God with this one.

After we felt that things were prepared, Todd & the girls went to sleep.  Me--not so much.  I was thankful that Todd could sleep because it was snowing outside & he would be driving us to the hospital. I was definitely tired--just coming off of a non-restful night.  However, I just wasn't ready to sleep.  I tried to quietly work around the house & finally I decided to read a book that a friend had just given me-- "Waiting on God".  Seemed appropriate, don't you think?

That book by Charles Stanley has been helpful, even though I haven't read very far into it yet.  I've been having some problems with comprehension (we were told that could be a side effect of the liver problems) so I usually only read a few pages & then let them sink in.  The part I read that night was explaining how God is at work preparing the path for us.  We can't always see HIm at work.  I didn't know how that would surface & help me the following day.

I finally fell asleep a little after midnight & then we got another call from the transplant coordinator around 1:30am on Saturday morning.  She said "how soon can you get here?"  I told her that we needed to wait for someone to get here to stay with our girls.  She asked us to arrive between 3-4am.  

I'm going to stop here because I imagine it's getting long for you.  I'll tell the rest of the story soon...

Thanks for the love & prayers--God's still preparing!

Belinda & Meg 

Not in God's Plan....today

1/24/15 2:10pm-- We just had a consultation with the Dr., unfortunately, the donor had some undisclosed medical concerns. The Transplant Team did not feel the organs were Class "A" organs and has just decided to wait for better organs for Belinda. So for now...the surgery is off and we will be heading home.

I had just prayed, about an hour earlier, that God's will be done and if this wasn't His timing to take it away. We are in awe at the works of our Amazing God.

Trusting Him, and thanking all of you for your prayers.  Peace to all.

still waiting

1/24/15 1:30 pm Just a quick update.  Thanks for all your prayers.  We are still waiting.  Belinda is doing well and is ready to go.  The medical Team still hasn't confirmed a match to the donor but we are proceeding as it is.  The surgeon was in about an hour ago and discussed the procedure.  This will be an 8-10 hour surgery.  Once we get the green light this will go well into the night. Please continue to pray for the medical Team, the donor family, and for Belinda.  We rest in God's hand and are at peace.

At Hopkins

1/24/15 8am- We made it to Johns Hopkins at 3:30 am, leaving York we had about 4" of fresh snow but the roads were in good shape. Once we passed Hunt Valley the snow was pretty much done.

Belinda has been admitted, lab work and xrays are now complete. We are told she will be headed to OR anywhere between 10-noon.  The surgery is very involved and may last 8-12 hours.

They are still testing and mapping the donor organs to make sure everything is a match; however, we are proceeding as it is. If everything moves on this schedule surgery should be wrapping up by 8 pm.

We are at peace and resting in the palm of God's Hand. Thanks for your prayers

It is time!!

This is the announcement we have all been in prayer for--We just got our call and are headed to Hopkins for Belinda's transplant! Please pray God's peace over the donor's family--Please pray for the Medical Team, for wisdom and endurance as this will be a very long procedure for them--Pray for Belinda, that her body will be strong and receptive to the new organs--Pray for Sara, Carly, & I that we can have peace and trust God in this journey.  Continually praise God as we all journey together.  He is good and has provided absolutely everything we have needed! We truly rest in His hands.  Proverbs 3:5-6 has been our foundation.

Merry Christmas from #2 !!!!

Merry Christmas!

I'm sure you can all guess what my Christmas gift request is.  It's the same as 2013, only it seems more likely this year.

I received a call this week from Johns Hopkins to see how I was feeling & to let me know that I'm #2 on the list in my blood type!!!  I could feel some anxious fluttering when I saw my transplant coordinator's name appear on my phone.  She always starts her conversation with "I'm just checking in--this isn't a critical call".  (I'm sure she knows the reaction to her calls from people who are on the transplant list.) 

Most of my job is bookkeeping & I was in the middle of payroll processing when I received the call.  It's good that our Director double checks everything.  My mind was a little preoccupied & I felt like I had ADD.  It can be an overwhelming feeling to think that the call could come at any time.  As I leave work each day, I look over my desk & wonder if there's anything that I should complete or leave a note with an explanation.  I know that someone else can do my job adequately--it's just that I don't want to leave loose ends & confuse my co-workers while I'm off.  Prioritizing is essential--I function each day with the mindset that I may not be available the following day.

Many of you have been asking how I'm feeling physically.  I'm doing OK but am definitely ready for the next step--a new body to start off 2015 would be wonderful!!  Some days are better than others for me.  It's almost always a good day/not so good day rotation.  So, this helps me to be thankful for the days when I'm feeling better & helps me deal with the not-so-good days.  Comfortable sleeping is quite often a challenge.  There simply aren't too many parts of my abdomen that aren't tender to lay against. To give you an example of how tender it is:  laying against wrinkles in my clothes or sheets is uncomfortable.  Sometimes, I feel like a hot dog on a rotisserie--I just keep turning until I'm done :)

 As we heard a testimony from a friend with ALS, I was reminded that God has me on this path for a reason.  I'm anxiously awaiting to see how He will be glorified through all of this.  I'm thankful that I get to see a close-up view of it all. 

We've had wonderful Christmas celebrations with family & friends & I'm very thankful for that.  One of my highlights was the 1st annual Little Family Carrom Tournament and that everyone was well enough to participate in it.  There was a lot of competitive love shared!  I pray that you felt and shared God's love during this celebration of the birth of His son.

Merry Christmas!
Belinda & Meg (hopefully, soon this will just be from me)

#7

Why #7?  Let me explain why that's my new favorite number (I never believed in lucky numbers but I favor this number right now)...

Because of the headaches that I mentioned in my last post, I had a neurology consult and the doctor prescribed a few options. Before proceeding, I wanted to get them approved by my transplant coordinator. While I talked with her, she said "since it's been a while since we've talked, let's check where you are on the transplant list."  

She told me that my MELD score is 29 (I thought it was 27 so I've been given extra points).  Also, she counted down the list to find my name & stopped at 7 & said "there you are!"

Wow--that number brings this whole process to a closer reality because my coordinator shared that there have been transplants done for patients below me on the list.  Mainly, that is because those donors had hepatitis & the recipients also have hepatitis so they were willing to accept those offers. Because there is no alternate process to compensate for liver failure (like dialysis does for kidney failure), some people on the waiting list need to accept whatever offers they get because they are so ill.  For me, the doctors are waiting for a "clean donor" without complications.  

My coordinator told me to "get ready--it could be soon".  Only God knows what "soon" means, but I asked her if there's anything that I should be doing to prepare.  She advised me to stay as healthy as I can.  I translated that to:  flu & pneumonia shots, plenty of rest, avoid crowds, wiping off grocery cart handles, etc.  I've never been frieked out by germs.  I know some germophobes whose families are frequently sick--I think you can overdo the anti-bacterial thing.  However, now I've been more conscious of trying to avoid germs or higher risks of getting sick.  I wouldn't want to get a transplant offer & be ill & not able to undergo surgery.  

So, this news has kicked some more planning into gear.  We've finalized a plan about who will help with Sara & Carly while we're at the hospital.  Todd plans to stay fulltime with me for the 1st few days--to be my advocate while I can't speak for myself.  

My husband has lovingly told me that the medical staff will be thankful once I'm under anesthesia because then the questions from me will stop.  I've always been full of questions & my parents can confirm this.  (I know it drives Todd crazy at times.)  This whole process fascinates me.  I've always been intrigued by how God designed our bodies & want to know everything that will be happening to me.  I would prefer to be reading about it in a book (instead of my own body), but I want to know what's going on.  These surgeons are world-renown.  They shouldn't mind me double checking a few things before I go to sleep, right?  :)   I know it won't shock some of you, but I have a list of questions & things that I don't want them to forget (2 hernia repairs that they promised me, take pictures of Meg, etc.).  They will probably give me the quick-acting anesthesia!  

Thanks for following along--we'll keep you posted!

Belinda

Blessings abound!

Long time...no post...

I hope you are all doing well & enjoying the beauty of fall!

I'm sorry that it's been so long since my last post. Since May, I've been dealing with almost constant headches and some difficulty with mental clarity so I haven't spent much time on the computer.  However, during this time of not feeling well, God has been reminding me of His presence by blessings around me.  Here are just a few:

It seems that when I'm feeling a little low, I get a text or card or someone reminds me that they're praying for us.  I'm amazed at how many prayer lists we're on--can't have too many of those!

One day, my parents got a call from a distant cousin of mine. He heard about my situation & felt that God was calling him to be a donor for me. He was extremely disappointed when I told him that I needed a deceased donor so I couldn't take his offer. Just the thought that he cared enough to call me was a lift to my spirit!

Others have offered to donate blood.  Not sure if that will be needed but their offer warms my heart. 

We have had meals donated.  Some have been frozen for later use, but some have been used to lighten our burden on tougher days.  One less thing to think about when rest is really what I want :)

The month of August was the worst time for my headaches & mental fogginess.  Even something as simple as playing a game, following a recipe, or going to the grocery store was frustrating for me.  I felt exhausted all of the time. I called my transplant coordinator to see what I should do & she said that it would be a good idea for me to be re-evaluated by the transplant doctors since it was almost 1 year since my last full evaluation. 

So, in mid August my liver doctor re-evaluated me & ordered an MRI to rule out an aneurysm or cysts on my brain that could be causing these headaches & other symptoms.  Thankfully, the MRI did not show any of the suspected things. However, my doctor did not know any other causes & referred me to a neurologist.  The 1st available appointment was October. They told me that I should feel fortunate--usually, the wait is longer. 

Now, here's when another blessing happened:  after my August appointment & MRI, I was very discouraged because daily functions were becoming more difficult & I would have to wait 2 months to see another doctor for any possible treatment.  At the height of my difficult days, 2 separate groups of friends met for their weekly gatherings where prayer is the focus.  That Tuesday, both groups prayed specifically for my symptoms and within 2 hours of their prayers, I felt the fogginess lift from me. It wasn't anything gradual--I felt a sudden change in my mental clarity.  The headaches & fatigue have continued but the fogginess hasn't returned in that severity!  Praise God!!!

It's easy to get discouraged while waiting. Our faithful God often shows me that He is still present & He has used many of you for those reminders.  We are so blessed by the community around us!

With weariness, but hope,

Belinda

"Trust in the Lord with all your heart and do not lean on your own understanding" ~~Proverbs 3:5-6

Just a waitin'.....

Yes, that's me--just a waitin'...  Nothing new to report...

Some days, when I'm feeling ok, this whole transplant process feels like a dream & doesn't seem real.  I have to remind myself that my life could change with 1 phone call.  But, in reality, that is true for all of us...

On other days, when Meg is acting up & is painful or taking up more than her fair share of space, I am totally ready to proceed with surgery.  My energy level seems to be decreasing.  I have really limited my quantity of food after lunch.  If I eat too much food late in the day, then I'm too uncomfortable to sleep.  A dear friend gave me a book of 100 smoothies.  So, I'm learning to drink my nutrients with less bulk.  Seems to be helping--yay!!!  Carly is always willing to be my taste tester so it's fun to share them with her! 

I have a friend who is in the final weeks of her 1st pregnancy & is very anxious to deliver because of being uncomfortable.  When I look at her, and know what lies ahead, I remember how much easier my pregnancy was compared to the fatigue & journey through the 1st few months of parenthood.

So, I am encouraged by watching pregnant women.  (There's lots of them at our church, so they're easy to find.)  When my fatigue gets me discouraged, I tell myself to push forward because this is the easy part.  The process during and after surgery will have plenty of "opportunities for adjustment".  Doesn't that sound positive?  To be honest, there are parts of it that I'm not looking forward to, but just like with childbirth, there are some things that we need to go through to get a better end result.

I receive a daily email scripture.  I read each one but some of them "sink in" more than others.  This one came this week & encouraged me:  I hope it encourages you with whatever your life includes right now: 

^"Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus."    ~1 Thessalonians 5:16-18

Love to all,
~~Meg & Belinda

Woo hoo--27 points!!

Happy Spring!!

Wow--another month has gone by since my last update. I actually lost track of time and just realized that 3 months have gone by since I was given a score of 25.  My doctors can re-apply every 90 days & I just found out that I've been moved up to a score of 27!  That doesn't give us any more info about the timing for a transplant, but now they are saying that I have a "high score".  They will re-apply in June for 29 points, unless God provides a donor before that time.

I'm so amazed at how many people have shared that they are praying for our family.  It's very encouraging & gives us strength.  I've been asked what specific prayer requests I have so I thought I would share some...

~~for my donor's family. It saddens me to know that someone else will be grieving over a death while I'm receiving such a wonderful gift.  I pray that they know Jesus & can have peace in their time of sorrow.

~~for peace for my family & for them leaning on the knowledge of who is really in control.  God will provide our every need, in His perfect timing.  He has already provided a community that surrounds us & is walking beside us.

~~for continued peace & patience for me. I have had a deep peace, that only comes from God. I pray that it continues despite my growing belly & the days when my discomfort is greater & I have difficulty sleeping. 

~~for learning how to adjust my eating habits in order to minimize the discomfort after eating. 

~~for learning how to be patiently on the receiving end of serving.  We have had so many offers for help during my hospitalization (approx 2 weeks) & recovery.  What a blessing!  I believe, however, that I may have difficulty watching others do the things that I usually do.  It's not that they won't do it to my satisfaction--I just like being in motion & being independent. 

If you are a prayer partner--thanks!!

Every day is part of the journey that God has planned for us.  It's easy to focus on a future event & think of the days in between as just waiting time.  Our "tunnel vision" could put us at risk for missing blessings and opportunities along the path while we wait.

So, I encourage you to take time to stop & thank God for your blessings every day!  Look and listen for the opportunities that He has ready & waiting for you! 

With peace & love,

Belinda & Meg

John 14:27 records Jesus' words~ “I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid."