The Bebb Family would like to wish you all a very Merry Christmas! 

I haven't updated this site in about nine months. In that time there have been many ups and downs in the lives of the Bebbs. I wanted to sit down and write what it has been like for our family. 

After Marah's stroke in February, we knew that life would be so much different. That's about the only thing that we knew for sure. It looked like our hope and her resilience were being tested. This girl who had not only beat cancer but destroyed it, was hit with a hurdle that looked like it was going to do her in. I remember laying in bed with Alex one night and crying asking him if he thought she would make it through this. It was the first time that I truly thought we might actually lose our baby girl. 

As the weeks went by and she continued to physically improve our hope began to become stronger once more. I also realized her resilience was never in question. She is truly the most resilient and strong person I have ever met. The motivation that she holds in her very being is something to be envied by anyone who is blessed enough to know her. As April passed and we were still in the hospital, I thought we would never make it back home. But! Marah once again showed us that she was stronger than we were giving her credit. Her new form of dialysis, peritoneal dialysis, was working well enough to go home! It was definitely not super optimal but it worked well enough that we could be at home as a family and not have to go into the hospital 4-5 times a week for dialysis. 

Over the following few months Marah only stayed out of the hospital for a few weeks at a time. Most of the time it had to do with blood pressure problems. At first it was because her blood pressures were too high. She was put on a couple of different hypertension medications to try and help keep them under control. The problem with that is that if she got too "dry" on dialysis it could be a skewed result. It started to get pretty frustrating. But it was nothing like the months between August and November. Those months about did me in. Marah was in the hospital more than at home. We made three 911 calls and a high speed drive to the local hospital that resulted in a few flights to KC. Her monthly clinic visits were starting to occur while she was inpatient. She became a staple on the kidney/liver/rehab floor. The nurses, doctors, and staff all learned who the sassy Marah is and they all love her! 

If I learned anything this past year it's that it is imperative that I advocate for my child. I am so thankful for the staff and team that work with us at Children's Mercy. She is truly loved by them all and is the heart of much of their smiles and frustrations.  The listen to me and truly treat me as part of the team. If I have a question, they do their best to answer it. But many times there have been no answers to the questions that are posed, which brings us to the most difficult month...October. 

Marah was admitted twice in the month of October. The first time was for low blood pressures. Once admitted, they stabilized them by completely taking her off of her hypertension medications and starting to tinker with her salt intake. We were home for about a week when her blood pressure dropped to dangerous levels again. She became unresponsive and this Momma was scared out of her mind. Once again she was sent to KC and we stayed there for another three weeks. During this time I was a bit more on the forceful side of looking for answers. Marah seemed like she was the happiest and most joyful kid most of the day, but about a two hour window every day her blood pressure would fall to dangerous levels. It was more than just a little bit frustrating to try and find the reason and then the remedy to such dangerous blood pressures. 

Why are said blood pressures so dangerous? Well if the blood pressure is too low it keeps the blood from flowing at an adequate rate to get proper blood flow to the brain. What does that mean? A possible stroke. And buddy you better believe that was NOT something any of us wanted to see again. They did blood tests, calibrated blood pressure machines, checked her heart, did an MRI of the brain. That last one gave this Momma some serious "Scanxiety". They were looking for a possible reoccurrence of cancer. I don't know that my heart could have handled that outcome. Thankfully, all of the results came back favorable. No cancer. No heart disease. No answers. Or were there? 

One of the things they kept messing with as they were doing all of the tests was watching her sodium levels. The higher the sodium level, the better the blood pressure. It was becoming quite the delicate balance. Too much sodium, not enough profusion to the brain...possible stroke. Too little sodium, not enough profusion to the brain...possible stroke. Too much sodium, not enough water...constipation. Constipation leads to less than favorable peritoneal dialysis treatments. Less than favorable peritoneal dialysis leads to longer hospital stays. It became a very, VERY frustrating equation that was stumping even the most seasoned of doctors. 

What did this all mean? Well for the previous couple of admissions I would joke that Marah was just going to be admitted to the hospital until she transplanted. That became less of a joke as the days went by and her blood tests returned less than favorable results. Her dialysis was not optimal and there was little to do about it. When that means is that there are quite a few alarms every night that require attention from someone to fix. The hope is that there are less than 5 a night. Marah was having about 30. I describe the response to alarms as having a newborn without the reward of the newborn cuddles. The alarms typically go off somewhere between every 45 minutes to every hour and a half. This is not seen as sustainable to those who are in charge of educating parents in administering treatment.

The team sat me down for a heart to heart at one point to talk about the options. In my opinion and that of her main nephrologist, there really isn't options in the plural sense. There is only one option, peritoneal dialysis until transplant and if that means we have to stay in the hospital until then, then so be it. Why is this the only option? Because the other two are not feasible. One is hemodialysis (HD). This is what she did for about a year before she started PD. HD is not gentle on blood pressures and is also not gentle on the cardiovascular system. In simplest terms, it's not going to work. The other option is CRRT. This option is truly not an option for many reasons. One, she would have to be sedated and in the PICU until she could transplant. Two, it takes WAY too much blood to work and she has always needed a blood transfusion to stay safe. And three, it is continuous. She would not have a break to be a kid. She also would regress physically, something she cannot afford to do. Therefore, staying on PD is the ONLY option. I explained to the doctors that one of the positives of Marah being in the hospital is that I can get a full and good night's sleep while staying at the Ronald McDonald House. I also explained that I understand that this is temporary. At this point Marah has just a little under six more months until she can activate for transplant. We have to make it at least until then. That means that there is an end in sight and full nights sleeps are on the horizon!

Speaking of transplant...where are we? 

Well another reason CRRT will not work is because the use of a blood transfusion. If she has to receive one of those she will have to wait at least six months before she transplants, so we are doing what we can to stay away from that! Marah has started her work-up for transplant. She has had her lab tests, the most important being that she has NO antibodies. This means it will be the easiest to match. Not that it'll be easy because of course nothing about Marah can be easy. Her blood type is B+, which just so happens to be one of the most difficult to match for a kidney. Of course. That is why I have been trying to bring as much awareness to her upcoming transplant as possible. The hope is that I will be able to give her one of my kidneys. But the reality is that I'm not positive I will be an acceptable match or even healthy enough to provide her an extra kidney. So far there have been at least two other people that I know of that have gone through the process of being worked up to see if they are suitable matches. 

In the next few months Marah will have multiple doctors make sure she is as ready for transplant as possible. When she was having such difficulties with her blood pressures, many of the doctors tried to advocate for her to have her transplant day be moved up. That plan was shot down by her main doctor. I also did not complain. Marah has to have dental work done, which I am not so patiently waiting on a call about. Alex and I have to meet with a psychologist to prove that we are ready to adequately take care of a new kidney. She has to have an extensive exam by oncology to make 100% sure that she does not have any of that nasty cancer hanging out in her body. She also needs to start growth hormone. She has rapidly gained weight but has not grown taller in almost 6 months. This is caused by her lack of kidneys. It is extremely common, but not a great situation. She can only take the growth hormone until she transplants and then she'll have to pause. That only leaves a few months for the hormone to take effect. 

In the meantime we are doing all we can to keep Marah as healthy as possible and out of the hospital. She's stayed out of the hospital, but she did get COVID right after getting discharged in November. She was down for the count for three weeks. Since then, she has only left the house to go to the doctor and therapy. I have also tried to stay as isolated as possible. While this is a very lonely time, It is what has to happen to keep our girl as safe and healthy as possible. Christmas shopping was done mainly online! Auntie Kyndahl and family t and AJ's Godmother came to visit. Then for Christmas Grandma and Pa came to celebrate with us! The kids (and dogs) have been enjoying their company. 

It seems almost unreal to realize that it has been two years since this journey began. I think back to two years ago and the joy I was experiencing with watching my baby enjoy her first Christmas. I was so excited to spend Christmas with my family and the New Year with the Leachs like I had so many years prior. I loved it all. I loved spending time at home with my husband and baby. I never expected that in the following couple of months my life would change irreparably. Pain like I had never experienced would battle with the joy I had just soaked in weeks before. Then again the following year after a joyful Christmas a very painful few months. It makes going into 2024 seem like a daunting task. But that is not the life I will choose to live. Or the life that I want to model for my children. I choose to rely on 1 John 4:18 and strive to allow His perfect love to cast out all of my fear. My beautiful daughter shows up everyday and proves her doubters wrong. My little boy is the best comic relief. I have a good friend in Heaven who I know is praying for me, my family, and my baby girl. 

As always, we appreciate all of your prayers. We appreciate all of your support. Please, please keep the prayers coming. Please help us tired parents through your kind words and prayers know that we are in a season of life that will come to an end. Please pray that we remember that we will one day have a life that does not revolve around dialysis, keeping water away from our girl when all she wants is nothing more, and that we will have a somewhat "normal" life.