Better slow than never...

Hi everyone!  

I'm baaaaack!  (AND without Meg the 10 pounder!!!)  Todd did such a great job with posting while we were at Hopkins.  Once we were home, he turned it over to me & you see how well I did at keeping up with it....  I'm a new liver now, but not a prompt blogger.  Prior to my surgery, I had never blogged "just because" & always felt the Spirit leading me.  Just haven't felt the Spirit encouraging me to blog since the surgery.  

For the first few weeks at home, I was sleeping only 2 hrs at a time, pretty uncomfortable with digestive issues & mobility, adjusting to life outside of the hospital, Todd & I focusing on taking care of me (everything took a lot longer than pre-surgery), getting rest & hanging out with Sara & Carly.  Seemed like a REALLY long time since we spent time together.  They had come to visit me at the hospital but it wasn't the same as spending time with them at home.        

So, a HUGE thank you for your patience & for many of you checking with us to say "haven't seen a blog post...how are you?"  We were REALLY blessed by the love & care that surrounded us & continues to do so.  

Here are some ways that people helped (just to name a few) meals, cards, emails, calls, visits, decorating our house for our homecoming, setting up a 1st floor bed for me, weeding, cleaning, transportation & errands, shopping with Sara & Carly, groceries, friends taking Carly & Sara to hang out with them, keeping me supplied with plenty of blueberries to support my habit (glad I didn't miss that season!), putting us on prayer lists, lawn mowing, caring for our girls while we were in the hospital, and many more.  

This is just a preliminary post to say "I'm doing well & getting stronger each day.  My medical staff is very pleased with my current medical condition & say that I'm ahead of most patients".  

I'll post again soon to start to chronicle the time during my surgery & since my hospital discharge & put my thoughts in writing.  I've been getting more sleep so that is a blessing.  My disrupted sleep patterns were effecting my mental abilities.  I can function fine; however, I am having difficulty with deeper thinking. (My new friend, Prednisone, is the cause of that.)  Also, with my A personality I think I should have it processed in my mind before trying to share with it others. That's why I haven't posted yet.  However, I know that some of you are wondering what's happening in my new world so I wanted to start somewhere.  

I'll never be able to praise God enough for this adventure--the new organs AND the waiting time.  I'm slowly re-entering the public world.  Until recently, my travels solely included blood labs & Johns Hopkins.  However, God gave me great peace during this time of seclusion & often solitude.

Here is my 1st card.  It's from my friend, Micah, and his family.  Their yellow lab, Ben, is pictured on it.  He's the dog that I kept seeing in my room while I was hallucinating shortly after surgery.  I wasn't afraid...I just kept thinking someone would step on this sweet dog.  This picture also shows the awesome view that we had from our room.  What a blessing!
 

Love & peace to you all!
Belinda (without Meg!!!!) 

                                                       At one of my Hopkins clinic visits

Info for Visitors and Well Wishers

It is so good to be home! We have been truly blessed! However, the journey continues and there are still many challenges to overcome, by God's grace we will continue to move forward.
We need your help with this as well---there are a few do's and don'ts for friends and visitors.
1) Please do not send flowers-Belinda's immune system has been intentionally confused/shut down, so it won't reject the new organs. Flowers and house plants are not allowed because of bacteria they carry. Belinda can't even water the plants that are already here.
2) Please call before visiting--if you have a cough, cold, or allergies please know we love you but we ask that you stay away.
3) No hugs or physical contact while visiting--with Belinda anyway, I'll take all I can get!! :-)
4) Please do not bring pets, and don't get offended if we don't visit you if you own pets--again her immune system is compromised. Cats and birds are a definite "no contact" animal-even to the extent that if I am working in a home with these I need to undress outside and shower before contacting Belinda.

Lastly--if you really wanted to send flowers, instead may we suggest a donation to Servants in honor of Belinda's recovery. We are truly blessed to be cared for by so many people!

Goodbye Gown

Guess What?????

Finally--Goodbye Gown!!!!

Friday Evening Update

Belinda had a good day today. We both got good rest last night. She finally got relief from her indigestion and food started tasting better today. She was able to drink her required 96 ounces of water, and we walked about 3/4 of a mile total today (not all at the same time).

Her strength and her appetite are coming back!  The medical team is talking about a potential Monday discharge. They want to monitor a few changes they made recently and if everything is stable we are on track to head back to York early next week! ;-)

God is so good!!

Wednesday Morning Update

We both had good rest last night. Pain levels regulated. We are eager for the promise of a new day.

OT started this morning. When the walker arrived she wasn't too happy--when he showed up.... She is thinking "surgery, what surgery" she did a non-stop lap around the entire unit! 

Once again we are blessed by our Amazing God! 

Tuesady night update

Today was a challenging day. The beauty of the red sky after the storm tonight reminds us that God's promises are new everyday. We trust a fresh start tomorrow and a new day. Praying for a good nights rest tonight and the nausea to remain controlled. We are truly blessed!

I think it is Monday...

Monday 6 PM--What an amazing 6 days! Belinda has had some bumps in the road but overall she continues to improve. Today the last of her abdominal drains were pulled, her last neck port was pulled and the catheter is now out. She only has 2 IV ports in her left arm anymore. Walking has been a challenge as she can't get stable on her feet, the doctors are tweaking some blood pressure meds this afternoon to see if they can get this on track. She & I went through training today to prepare us for life with a new liver and kidney. There will be changes we need to make but we are super excited for the possibilities God will open for us through this. Continue to pray--we covet them!

Sunday June 21 Happy Fathers Day

Happy Fathers Day--Today is another amazing day--I am truly blessed! Belinda continues to do great and is getting stronger every day. It is hard to believe she is only 3 days post op and was up and walking this morning! Yesterday when she was a bit frustrated her surgeon reminded her that she had just undergone one of the most invasive surgeries they do at Hopkins. She has about 100 staples in her abdomen, externally, and who knows how many internally. To help her walk this morning was truly a blessing from God! I am amazed at the strength He has given her on this journey. Prayers have truly been answered!

I am going to include a few pictures of the liver being removed, don't look if your not curious. There is one I will not include because I don't have the medical departments permission to use it; however, it really gives perspective to the size of her diseased liver. The person in the OR holding it is not a tiny person. She is holding it in front of her own belly and it stretches the entire way across her abdomen and from her rib cage to her waist. It is clear to see why Belinda was in such discomfort and had digestive challenges. There simply wasn't room for her stomach to do its work.

The picture above is removing the liver from Belinda. Her incision runs from her breastbone down about 6" and then turns left and right about 8", it makes a Mercedes symbol. She has a second incision about 8" long below that and to the right. This was for the kidney transplant.

This is the liver removed. I think Dr. C told me it weighed over 7 pounds, more than double the size it should be. The best I can figure this is about a 2 gallon bucket they have it in. You can see her liver was covered with hundreds if not thousands of cysts.

I was blessed by some scripture a good friend shared with me this morning as I drove home, it truly sums up our journey.
"I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along.  He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the Lord." Ps 40:1-3

If you don't believe in miracles and the power of prayer--call me, we need to have lunch together.

Saturday June 20 Morning Update

What a difference 24 hours makes! God is so good!  We truly cheerish the prayers of everyone that has  been lifting Belinda and our family to God.  He has heard your prayers and continues to answer them.

A dear Brother texted me at 5:30 this morning reminding me of a verse on his heart-Romans 12:12 "Rejoice in hope, be patient in tribulation, be constant in prayer". Be assured God hears our prayer and we rejoice in His hope of healing for Belinda! This morning I am rejoicing with her as she is feeling a great deal better than yesterday and we are eager to get her up and walking today.

Last night we were blessed with a restful evening where we could both sit and talk as we overlooked the beautiful night sky of Baltimore, it was our "date night" and we truly were blessed as we reflected on God's grace and provsion in our lives. Belinda was able to share with me her emotions as she stepped up onto the operating room table. I won't expand on this but will allow her to when she has the strength to post her own post. Be assured it was an amazing time as she was able to proclaim everyone's prayers over the medical team in the room, she said there was a very positive response and they were clearly grateful to have hundreds praying for them.

I need to back up a bit because, in my fatigue, I realize there are gaps in the blog. I was sending lots of texts and did Facebook posts as well, it got confusing and I missed things in various places.  Thursday night Belinda was transferred out of ICU, we rejoiced in the upgrade but it took a toll on Belinda as well. The move was exhausting and the orientation to the new staff wore her out. New meds were introduced and the chemical changes created hallucinations and stress on her body. In the early morning hours her BP elevated, breathing was labored, and her oxygen levels diminished so the team needed to restart her oxygen assistance. On top of this her pain levels, because of the stress, were requiring much more pain meds. It was a long night.

Dr. Cameron stopped in Friday morning. This was definitley God's perfect timing, Kairos Time, as he was able to encourage and affirm Belinda. He explained that the hallucinations are normal because of all of the steroids and the pain meds. He said in fact, at times, they have had to send security into rooms to help restrain patients. I am glad she was only delivering pizza, seeing dogs on the floor, sailing on a boat and other not so scary things. She was frustrated because she couldn't control the situation. He assured her she is days ahead of other double transplant patients. His calming nature and confidence was very reassuring. They adjusted some meds and changed some things around.

Shortly after these changes Belinda's parents arrived with our daughters. We had to cut their visit short because Belinda was again exhausted and not really able to communicate, she clearly needed more rest and the new pain med was going to allow that.

She fianlly slept for 3 hours! By 4 PM the nurses were able to get her out of bed and transferred her to a chair again. She began sipping water and ice chips and her kidney really kicked in and she started passing water again! 

We were able to sit up and talk into the evening and then she slept for several 3 hour periods through the night. This morning when the doctors checked in they are really excited. She will have more tubes removed today, she will be allowed to get washed up and she is encouraged to be up and walking today! We are pumped!

If today goes as anticipated we are hoping to see a few visitors tomorow and in the coming days. People have been asking about cards and flowers. We cannot accept any flowers. The potential for bacterial is too high and Hopkins will not allow them in the rooms and advise us against them in our home. Instead of flowers an email or card to the house would be fine. Thanks everyone, we treasure you joining us on this journey.

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