New Beginnings..

A quick update!

Madeline is doing very well still with the exception of that Nasty CDIFF that doesn't want  to go away..Although Infectious Disease cleared Madeline to be around other children..her poop situation (for lack of better description!) was a bit too overwhelming for her daycare. It was very time consuming and it was decided that Madeline should seek an alternate place of care. 

We did find another Daycare provider whom we actually used in the past and we are really happy with the new placement. However, she is 9mos pregnant and we believe about to have a baby even this weekend! 

In the meantime/until her return Madeline is playing rotating roles at dad's shop, mom's job with her meemaw... Hopefully things will even out and normalize soon. 

Otherwise she is happy and we are eagerly working away at the planning of a kidney walk fundraiser May 9th!

 All are welcome to come! Please see details below!

Take care and God Bless to all!

Event management for Maddie and Mark's Kidney Walk Fundraiser powered by Eventbrite

Spring Has Sprung and So Has Maddie!

Happy Spring everyone!

I cannot believe it has been 4 months since we have updated you on little Ms. Mad Belle! Wow time flies!

She is doing WONDERFUL  since her transplant- There have been bumps along the road but overall she is young happy and free :)

Medically speaking...

Madeline still has to be on a concoction of meds , she has adjustments here and there but has a very stringent med schedule which can be challenging at times. Timing and remembering to bring her meds everyhwere is very important in our schedule.

She sees her nephrologist every other week and she is stable in that respect .

Blood draws- Still every Monday morning- It's a pain but we are used to it!

Current Conditions..
The one complication Madeline has had since surgery is her struggle with CDIFF-This causes a great deal of diarrhea and has made life challenging for her potty training and for her babysitter. She feels fine but constant diarrhea can get a bit tricky. We had an appt with an Infectious Disease Doctor and we are going to put her on a 7 week trial of Vancomyacin and hope to knock this out of the park for Good!

Eating Habits...
Madeline is excelling in the eating department! She went from essentially nothing to having as much as one slice of pizza in a sitting! She is very particular about what she wants to eat (mostly junk in mom's opinion..pizza, organic hot dogs, cheese , pickles) but we try to be patient and celebrate the fact she is eating more and make her at least try a little bit of everything. Her babysitter reported this morning she ate scrambled eggs with Pepper and onion in them -How exciting!

Demeanor..
The terrible two's and 3's are inevitable and the force is strong with this one but we just like to think she has a strong will which will help her as an adult :) , Joking aside Madeline is happy, energetic, loves to socialize and explore and SING! She is constantly singing! I think like most kids her age she is in love with the Disney film FROZEN to which she affectionately refers to as 'Princess movie!" -She knows all the songs, she also loves Mickey Mouse/Minnie Mouse and the wiggles- We took her to see Mickey on stage and she still talks about Mickey coming to visit her at her house :)  We have been taking her to the pool quite often and she is loving that -Mom is starting swim lessons tomorrow in hopes that Madeline can start swim lessons too and they can learn together!

All this to say that we have been incredibly blessed with this gorgeous funny charismatic little girl and we are so thankful to GOD for allowing us to be her parents! Thanks to all of YOU who continue to stick with us and support us through the ups and downs we are truly BLESSED!!


As a way of giving back we are working to raise money for the National Kidney Foundation throught their annual Kidney Walk, June 8th 2014

We would like to raise 10k for this event- We are in the works to set up a fundraiser in May at Mitchell's Ice Cream in Ohio City where we will have a silent auction and a chinese auction -More details to come.

Would you consider supporting NKF to help educate others about Kidney Disease and to help families like ours?

Please check out our team page HERE -

Any level of support would be wonderful!

Check out the new pics of Maddie!

God Bless and thank you everyone!

Being home-- learning. living - and remembering God is awesome..

So we are home again!
 Madeline was released on Friday Nov 22nd and we were happy to go home! She contracted CDiff while in the hospital- and still has to be on medicine for blood clots in the form of two shots daily but we are happy to be home..

It has been a big adjustment getting used to this new schedule.. the worst will be this first month and then it will get a little lighter but it will never be 'easy'.. She has to get Shots 2 x a day, meds 6 times a day, blood draws at the lab 2 x a week, weekly nephrology appt and follow ups with surgeon and hematology.. we sat down and put all of her meds in our alarms in our phone and named the alarm by which drug she gets when.. i think the hardest part is being prepared to plan and never sleeping in! Today we had to be at the lab to get blood taken at 7 am and we made it and we brought her 730 am anti rejection meds that she is NOT supposed to be late for AT ALL or it could lead her to rejecting the kidney.. obviously there is some leeway but it is not a habit we are supposed to get into... we just have to be very planned and prepared..
also we have to be cautious about taking her out because of her suppressed immune system..I won/t lie and say it hasn't been overwhelming or frustrating because it certainly has and yes i cried and yes I complained but yes i am thankful for the technology that allows my daughter to live longer

I am still recovering as well- having to learn to slow down for me is very difficult but a lesson i think God wants me to learn.. I don't have as much energy and i am pretty much just 'sore' all the time.. but i do think in our brokenness is when we find God the most.. I hate feeling 'weak' or 'unproductive' and I hate not exercising! But this is how it has to be for now and I need to focus on what's important and place value on the good things around me//

A special thanks to so many people who have helped us these last few weeks.. our church family..family family..friends from work..friends from college and high school... all kinds of people stopping by to cheer us up bring us a meal or a little something to keep our mind occupied-It's been amazing and we feel like the luckiest people in the world .. You are all awesome and amazing and we love you!


 Two things that really touched me this week..

Watch this video..http://www.cnn.com/2013/11/23/health/preemie-baby-viral-video/

Of course I started bawling when I watched this. Ron thought I was in pain but of course it was just emotional for me-seeing the video brought up all the emotions we felt while our daughter was in the hospital the first few times.. the fear you have about what is going to happen,.. the sadness and loss you feel about not being able to have the 'traditional' experience you expect with your child.. watching the numbers on a monitor holding your breath that they come out right this time.. i could cry just typing this...But the important thing was it reminded me how much as unique as our situation is ..it isn't .every day there are kids and families out there struggling whether it be with health and medical issues or other issues.. and all of us just want to get through it.. and the great thing is.. we have GOD to help us through it..

now Read this..
Mark 5:21-22
21 When Jesus had again crossed over by boat to the other side of the lake, a large crowd gathered around him while he was by the lake. 22 Then one of the synagogue leaders, named Jairus, came, and when he saw Jesus, he fell at his feet. 23 He pleaded earnestly with him, “My little daughter is dying. Please come and put your hands on her so that she will be healed and live.” 24 So Jesus went with him

and later..
Mark 5:35-42

35 While Jesus was still speaking, some people came from the house of Jairus, the synagogue leader.“Your daughter is dead,” they said. “Why bother the teacher anymore?”

36 Overhearing[c] what they said, Jesus told him, “Don’t be afraid; just believe.”

37 He did not let anyone follow him except Peter, James and John the brother of James. 38 When they came to the home of the synagogue leader, Jesus saw a commotion, with people crying and wailing loudly. 39 He went in and said to them, “Why all this commotion and wailing? The child is not dead but asleep.” 40 But they laughed at him.

After he put them all out, he took the child’s father and mother and the disciples who were with him, and went in where the child was. 41 He took her by the hand and said to her, “Talitha koum!” (which means “Little girl, I say to you, get up!”). 42 Immediately the girl stood up and began to walk around (she was twelve years old). At this they were completely astonished. 43 He gave strict orders not to let anyone know about this, and told them to give her something to eat.

What struck me most about this passage was that everyone LAUGHED AT JESUS.. they thought he was an idiot..could he really think that this girl was just 'sleeping' ? But did that stop Jesus? NO.. he took the IMPOSSIBLE and made it POSSIBLE..

I know some people going through some very difficult times right now and I passed this along to remind them.. no matter what the WORLD tells us.. God is there for us and he can do amazing things..

Now.. God doesn't always do things the way we expect him..people die.. kids die..we lose our jobs,,.our house..a good friend... but sometimes God is doing something BIGGER through that,, all we can do is open our ears and hearts to him and ask 'God what are you saying to me?" and then ask yourself "Now what am I going to do about it?"

I know it's not easy and God knows I don't always listen even when I know what God is telling me to do ..but if we do.. the peace we receive is so much more than any person or thing on earth..

So don't let anyone tell you something is impossible..that your family won't be one again.. that you can't ever escape your pain again.. because it IS with God ...

Sorry to get a bit preachy on all of you but  I just felt I HAD to share what God was saying to us...

That's all for now.. We will be back soon..

Thanks for all of your love and support!

Madeline in her new big girl bed!

 Crazy med schedule

Happy to be home

Working on Healing..

Hello Friends
 It has certainly been a long week! It's amazing how quickly time flies in the hospital even when you are doing much of nothing trying to recover from surgery. We have had lots of visitors which has been nice and kept us distracted and lots of really sweet and lovely flowers and gifts for maddie and mom- Thanks to everyone who has been so kind of us!

 Mom has been struggling with the pain and recovery.. after getting over her nausea she was having a really terrible migraine on top of the other pain that was making it hard to interact with visitors and maddie. She ended up in her room in the dark with a cold compress on her head all evening/morning to try to get rid of the headache. Today she is feeling a little better - in constant pain but at least the headache and nausea is gone. It's hard to get used to being so slow moving and feeling weak and sore constantly and not do the things she is used to doing. It's also amazing how painful the gas that they blew into her from the surgery can be but it really hurts! Gas bubbles are trapped inside of her and they tend to float into her upper abdomen, chest and shoulders causing pain and soreness, the only way to get rid of them is to go up or down and out! It's just a matter of time and getting everything moving..

Maddie is in better spirits than mom and has been very chipper for being in the hospital/ post surgery. Today she kept asking her nurses 'what are you doing' as they messed with all the machines and tubes attached to her :) . She has had plenty of toys and visitors to keep her busy as well :)  However we are still dealing with the blood clot she has. The doctor explained that the clot will not go away with the medicine she is being treated with but the medicine will stop it from growing -If it grows it will be lethal .We will have to monitor it and she will have to be on the medicine for 8-12 weeks to ensure stop of growth. They have also tried putting her on feeds but it seems like she still keeps throwing up . She has been on a very low feed ( around 10 ml per hr ) but she is not tolerating it - so they put her on 5 ml per hour and it is half pedialyte half formula... We are hoping we can advance her feeds.

All in all we are feeling good we have to be thankful for the success we have. Recovery will be slow but sure

And we have God to thank for all of this.. And thank you to all of you who have been a support to us in this.

Sincere thanks and God Bless!

11-12-13 What a beautiful Day

A friend of ours pointed out that surgery was scheduled on 11-12-13 -Isn't that awesome? Seems like fate to us..God's promise that he is taking care of us in his time.

Yesterday was surgery day and was also the first snow of the year- Quiet and beautiful- But not easy to navigate on the roads!

We went in about 545 and all of our family was there to see us and support us which was very nice.First they took mom back for surgery- She waited a good while in the pre op room where there were lots of other Doctor's and patients- They let family come back one more time before surgery and Mom was able to kiss Madeline Goodbye before she went in.

Next thing she knew she was being woken up 'rachael, rachael - we are all done now' the Dr. said. She could hardly believe it- She didn't even remember putting a mask on or being put under or anything. She actually felt pretty darn good for just having a kidney removed- Not at all like she expected. Except her throat was very sore and dry from being intubated. The Nurse gave her a sponge and said to go slow with it in terms of wetting mouth/sipping water. Being that Mom was feeling super thirsty she went ahead and had a sip of water anyways-BAD IDEA- it's amazing how sick that one sip of water made her stomach! She felt so nauseous they had to give her anti nausea medication which did not help very much. They were about to give her another kind of anti nausea med when she started feeling better so they moved her up to her room.

 Meanwhile, Madeline's surgery was wrapping up and she was doing WONDERFUL. Already started urinating and Doctor's said her numbers were looking good. Looks like mom's kidney is starting to work real well for madeline! She was later moved to the PICU for monitoring where she slept almost the entire night. Her dad stayed with her in the room in the evening. He did an excellent job of running between buildings to check on his ladies and kept everyone updated during all of this.  He snapped some pics to share below-

Back in Mom's room she was struggling a bit with nausea and breathing issue. At one point during visit with friends and family she started dry heaving because there was nothing in her to puke up and ended up letting out a bunch of gas via belching. It is all part of the process they tell us. Several times mom caught a bout of the hiccups which is actually quite painful because of the stress it puts on the rest of your body. Then came chest pains and tightness- and feeling like someone was sitting on her chest- It was making it hard to breathe. They did two EKG's and a blood test just to make sure her heart was ok but everything looked fine. They had to remind mom to push her 'pain button' (a little button mom can push every 6 minutes that distributes pain meds). This helps a little- and more Zofran was given for the nausea.. The nausea is actually the worst part in mom's opinion. Worse than any hangover she's ever had ;) haha- Just kidding- But it was very debilitating.

It's an odd feeling to be so weak and to have a hard time even sitting up in bed. Not to mention falling asleep talking or typing.. or both. Sleep is good but there is a lot of in and out with Doctor's and nurses etc which can make it difficult at times to  rest. Mom is up now due to a blood draw at 430 this morning.

Took her first steps around the hospital room and cleaned up a bit. It definitely used up all her energy.Thankfully she has been able to drink waster today without nausea which is a plus.

Called the PICU to check on Madeline they say she's been mostly sleeping but did wake up, point to the tv and say 'fish; :) We have a feeling she will be bouncing around soon enough.

It is really surreal that this day finally came and we are done for now.. ready to move forward from here. It's a good feeling.

Also, I have been saying it over and over but I won't stop until everyone hears. .Thank you from the bottom of our hearts all the love you have shown us. We couldn't believe how many prayer chains we were on, how many people shared our status and asked their prayers, friends and family that came to the hospital and held mom' s hand while she cried and dry heaved into a bucket.. It's hard to even put into words our gratitude. God has blessed us with an entire community of loving people- and we won't forget. Thank You -

And Praise be to GOD who has made all things possible for us. He gives us so much despite  the fact we don't deserve it. We are so blessed.God reveals himself to us more every day and we are honored to be in his presence.

Anyways- Mom is falling asleep again while typing so it may be time to go and rest a little again .

Lots of love to all of you -Here's some picture recap of yesterday..

<3 <3 <3

                                                                                                            

Drawing Closer- To everything

Good Evening Faithful Followers-
There has been a flurry of activity since we last wrote!


We went through a lot of frustration and back and forth with trying to schedule this surgery- First we were told that it would be three weeks from the October 22nd Cancellation  due to anesthesiology's policy- However, after Madeline's Nephrologist returned from being out of town -she corrected us and told us that is not true that that is typically more for people who have had bronchitis and pneumonia so we were free to schedule asap-

Unfortunately at that point MOM's Surgeon was out of town and he insisted that he would not schedule the surgery until Madeline's nephrologist had cleared her for surgery but when she came back and did that he was out of town and there was no way to tell him. In attempts to hurry things up we entertained the idea of Mom switching surgeons but it did not matter because the date we were looking at (Nov 12th) was booked in the Operating Room and we were told Madeline's surgeon would be going out of town on the 14th and he would not want to do a surgery and then leave town.. they said the only day they could do it would be the 19th

Feeling very frustrated, overwhelmed and depressed mom continued to try to push for something to happen some way of making this work.. the weekend came and went and Monday (November 4th) mom had concluded that she would have to accept what seemed to be incomprehensible.. and then the transplant coordinator called- with Madeline's surgeon- and told us that if we KEPT mom's original surgeon and switched to a NEW surgeon for Madeline we could do the surgery on the 12th. .. So we made arrangements to meet the new Surgeon this past Wednesday (Nov 6th) and did all the bloodwork again and put it on the schedule.

Since then.. Madeline has been super tired and cranky and puking the last few days and the doctors said Her urea is worse (urea is how the blood filters waste and it's indicated by her symptoms and the level her BUN is at .. Which can be measured by a blood test]) .. Her BUN was a 60 now is at 90- the doctors want to check it again tomorrow because if the urea is really bad and she gets a new kidney the BUN will go down really quickly after surgery and it could cause swelling on her brain - so we need to check it to make sure it hasn't gotten worse if it is worse she may need to go on dialysis the day prior to surgery to make sure she gets back down to a safe level.

This is a little concerning but we are trusting that God will take care of our little girl.

This past month has been quite the rollercoaster- It has been most difficult for mom in learning how to release the control and let God intercede. It is so easy as humans to not trust his plan because we want to know for a FACT that things are being taken care of- we want to handle it OURSELVES so that we can have PEACE of MIND that it will get done and it will get done the way we want it.. but that is not how God works - if we say we trust him.. that means we submit to him and his will and rest in his arms knowing that no matter where he takes us he is TAKING CARE of us. There have been so many experiences in the last two-three years that have challenged our family to abide in HIM and to know he is in control and we get closer to him every time- but this last month has been especially challenging and a test of our will to do his will- especially for mom. But God has PROVEN to us that he is in control. DESPITE being told there was no way to do the surgery on the 12th he has made it happen and it is obviously the right timing with the physical issues she is having now.. if you can't see GOD in this situation then your eyes must be closed..

so we are thankful...so thankful for the mercy he has given us and how he has wrapped us in his loving arms and held us close through all this.. and for all the supportive people he has put in our life to carry us through these hard times- he is all knowing and powerful but he knows as humans we crave other human beings to help us get through alongside him and we have been fortunate in that regard.

That being said we also want to share a blessing that was bestowed on us recently.. a mutual parent of a child with chronic kidney disease , that we met in the hospital -- thought of us when writing to our local news channel Fox 8, to nominate us for their 'unsung hero's" Pay it Forward Segment. They surprised us with a monetary donation from The Word Church (local to Cleveland) and asked us to Pay it Forward when we can.. we were so touched and honored- and grateful.... I told a friend.. 'But we don't deserve it' and he said 'we don't deserve anything we are given in this life'.. That spoke deep.. we don't HAVE to have anything but God allows for us to have it and gives so freely and allows us to be blessed.. despite times of struggle..

Here is the link to the segment- http://fox8.com/2013/11/07/pay-it-forward-mother-gives-gift-of-life/ 


And to the point of paying it forward I wanted to share a little bit about a friend of mine who has a daughter who has been diagnosed with epilepsy from a young age and is just a little older than her.. It is a very difficult thing to manage and they are doing it beautifully- There are unique struggles they must face that I can't even imagine- for example a special diet that she must go on to help decrease seizures that is high in fats and very limiting- with Halloween just pass us imagine how hard it probably was for his daughter unable to even enjoy and partake in the treats that every other kid was that night?

They have started a 'Virtual Run' to raise money for awareness and a cure ..www.hustleforharper.com - November is Epilepsy awareness month and you can register at any point- Registration is only $20, or if you want you can just simply provide a donation.

We decided to donate a portion of the donation we were given to this cause and I am asking you to consider donating as well. Pray about it and let God lead you .


As always thanks for listening and God Bless!

We Will Bend but not break

Well.. you might be wondering why you haven't seen an update from us since the September given we were to have surgery on October 8th- The reason being that the surgery was postponed not once ..but twice now.

The Sunday before the original surgery date Madeline came down hard and fast with some kind of stomach bug that landed her in UH Rainbow hospital. She was admitted and the decision was made to postpone the surgery just to be safe. She was released that Wednesday and we had a new date of October 22nd (tomorrow!)

Obviously we were disappointed but understood the need to be cautious- It was difficult as Madeline's aunt had already planned a trip to come to assist with care and recovery for both myself and Madeline.. unfortunately she was unable to move the trip to accommodate the new date so she came for a visit as planned..

During the visit she and her husband became extremely ill and ended up in the er dehydrated and so sick- which resulted in the majority of their trip spent in bed and us away from them for fear of Madeline contracting something and delaying the surgery more

but alas...we are not in control of the universe and as it turns out Madeline came down with a cold last Thursday afternoon just after having final check in with her nephrologist- Despite our desperate attempts to heal her in a hurry (on lockdown in the house, tons of water, chicken noodle soup, humidifier, vicks vapo rub, essential oils) it has now turned into Monday and the congestion remains-

Soo....the Doctors and Surgeon and Anesthesiologist feel it is best to wait to perform the surgery for fear that this common cold could turn into something much worse after transplant and immuno suppressing meds.

As you can imagine this is a very up and down time for us and it can be quite frustrating- Not knowing when the surgery will be, how to keep madeline from catching sick again, if its ok to take her places like church and just 'out ' to get fresh air. We find ourselves second guessing everything and feeling like we just have to stay locked up in the house for fear she will get sick again. We also have fears that if we wait too long her kidneys could become worse to the point where she would have to be on dialysis which would be (another) surgery plus several days a week at the hospital receiving dialysis. Or she could catch an illness before her next scheduled surgery and postpone even more.. it is a bit overwhelming at the moment.

But - we are trying hard to remember that God has his timing for a reason and we don't always understand.. He says to Be still and know he is God and that he has it all under control ..and to let him handle it and not to let the stress consume us..

easier said than done right? :)

Here's some new Madeline pics that I love!