Hello and Merry Christmas or Happy Easter. Whatever holiday we happen to be closest to on the calendar by now. We have had a busy year as usual and are behind on our well wishes and December greetings.

We will start with our fearless leader, Christi. Christi is doing well. She had a good recruiting year and we are thankful for her continued employment and great working environment. This year marks her 11th year at Santa Rosa. Although Christi is blessed with a good job most of the domestic responsibilities fall on her shoulders. We are currently trying to figure out a plan to remodel our current house or find another that can be remodeled easier for more cheaply than our current home. This is not an easy choice as we love our current home, neighborhood, school and neighbors. Our son, Gus has grown to a point that our bathroom, hallways and bedroom can not accommodate him for much longer with out some serious adjustments or with out possible injury to Christi. As many of you are aware of our current situation, we would like to acknowledge all the help, financial, emotional, brain storming and good old sweat equity that has been provided. You will never know how eternally grateful we are to all of you. 

Gus. Gus is a rock star. He is doing very well. He is in first grade. He is in the highest Reading and Math group at school. He is thriving and has lots of friends. He still works very hard in therapy and attends the Greater Cincinnati Conductive Education school during the summer and Evendale school breaks. He is a tiger Cub Scout. He got to participate in his first Pinewood Derby this year and loved it. His Uncle Jimmy and cousin Jacob helped him build and paint his car. I think he enjoyed that as much as racing the car. We are looking forward to doing lots more with the scouts. Gus finished playing his third year of baseball in the Miracle League in Fairfield. He will play again this year starting in the spring. Grant Mefford has been his buddy and made his experience in baseball a fantastic one. Grant is like having a big brother and Gus just loves it. Starting in the Spring also he will go to the Winton Woods Riding Center and start taking horseback riding lessons. This was made possible by lots of folks giving Gus certificates for the Hamilton Park District for his birthday. Gus loves the horses. I better stock up on carrots and apples as he likes to give them treats. 

Ugh, me (Maria). Well, my health has not gone so well. I have been on dialysis for over two years now and and had some other health issues. I was on hemo-dialysis - A process by which two very large needles are inserted and one tube carries out your blood to a machine to be cleaned and the other returns your blood back to your body. This is done 3 times a week over a four hour period. It is not fun and ruins any day you have to do it. I originally chose this method because all I had to do was lose some weight to be  considered for another transplant. It is easier to lose weight on hemo-dialysis or at least they say it is. With being depressed with the treatment and feeling physically too awful to exercise I chose to change to peritoneal dialysis. This is where a port is place in your peritoneal cavity and every day for 10 hours a day a special fluid is placed in the cavity, is allowed to dwell so that it can pull out some of the toxins, then drained. This is done while hooked up to a machine that fills and drains the fluid continuously over that 10 hour period. Optimally, this happens while you sleep but sometimes can be quite uncomfortable  or doesn’t go well and the machine alarms. It is easier on the body, however, and I thought that I would feel better and be able to exercise and lose weight for a transplant. That, unfortunately, has not happened. In addition to my auto-immune disease of IGA Nephropathy that killed my native kidneys, I have Addison’s Disease and Grave’s disease. They had taken out my thyroid for the Graves but the treatment for Addison’s is prednisone. Both of which makes you gain weight. Well to be fair, it doesn’t MAKE you gain weight but makes it very easy to gain weight and almost impossible to lose it. Some days I am so nauseated or fatigued I can hardly move at all. I hate the burden this places on my family but have little recourse. There is one more plan I have not acted upon yet  and will share with you in the coming months. I do not like the choices I am faced with but my choices are very limited at this point. I am missing a big chunk of my son’s life and have not been a very equal partner for my spouse. Pray for us all. These changes will not be easy. My biggest need will be patience and emotional control. God help us all. 

Maria is home, rehab didn't get approved - another diagnosis got added

Maria came home from the hospital yesterday. Yes, home - no rehab. In the end, we didn't get it approved by insurance. Just pray she doesn't fall and that I can keep up with everyone around here! The consolation prize to no rehab was getting sent home with a walker - because, you know, we need more medical equipment around here!

On Tuesday afternoon they added yet another diagnosis to her already long list. She has Addison's disease. By itself, it's very manageable - like the Graves Disease she was also diagnosed with in the past week. It's just making her that much more medically complex. Both of these together mean she also has Autoimmune Polyglandular Syndrome. They add this to the chart since these autoimmune diseases are pretty rare but since she has 2 of them, they need to be on alert if any others surface. Her kidney disease is also autoimmune - IGA Nephropathy. Her body has not been good to itself all in all. :( But I did already know my girl was rare. :)

They printed out the side effects on her medications at discharge - we had to hire a crane to get it down from the 5th floor.

Apologies to those I ran in to or conversed with Tuesday afternoon and evening. I was overwhelmed by yet another "disease" and worried sick about the implications. It just seems more and more of Maria's poor body gets involved in long term problems. Kidneys, pancreas, parathyroid, heart, thyroid, and now glandular systems.

The "good" news is that the new diagnoses don't eliminate her from eligibility for a kidney transplant. We have to find a way to get there. Her quality of life has eroded horribly in this past year and we really need some light at the end of this dark, crappy tunnel.

For those who don't already know - they have put up some large hurdles we have to get over before they'll even let us be considered for a transplant. We are working through those and are actually finally getting a little closer, though it will still likely be many more months before she gets referred and then several more months after referral before a surgery would happen.

We are looking forward to a 3 day holiday weekend ahead and hoping to catch our collective breath. Wishing all of you a safe and joyful holiday!

Once we picked Maria up from the hospital yesterday, Gus just kept repeating, "I'm so happy to have you back, Mama! Mama Christi, aren't we SO HAPPY to have Mama here?" No more FaceTime - we get the real live deal!

Using the "D" word!

Yep, they used the D word today - discharge!

I guess they feel like they have things figured out with the hormone and thyroid stuff. They are just making sure she holds steady and they are looking for a rehab unit with an available bed. We're really hoping that she can regain some strength. My poor girl is just wiped out and so weak from being so sick.

I'm sorry if you've called or texted or Facebooked or messaged and haven't reached either of us! I have gone back to work full time (and then some). Maria has dialysis Mondays, Wednesdays, and Fridays and she is always really especially wiped out from that. When I talked to her this afternoon she was going to try to get a nap. We aren't even going to have time to see each other today. :(

We have a plan in place for Gus for July 5-8 also. It's just amazing how many of you are willing to jump in and help us out! Thank you so much!

We have definitely asked for and received help this past week - much appreciation to those of you who helped and those of you who offered!

We don't really know yet how long Maria will be in rehab. A couple years ago when she did it, she was there for 3 weeks. She's on private insurance now, though. so not sure what they will allow.

Leaving the hospital is hard when we have to leave Mama Mo behind.

Completely different direction for Maria

Well, yesterday they said they were definitely going to take out the kidney and today they said they aren't. Based on some of the other test results, they do not feel her pituitary is affecting her glandular functions. They started giving her thyroid medicine and her diarrhea stopped. She has hyperthyroidism - they mentioned Graves disease. And they are trying to balance her hormones to fix the other glandular stuff. As of this moment, they feel that might just cover it.

They did a gastric emptying study yesterday and it came out normal.

Her nausea is mostly controlled and just down to the "normal" nausea and vomiting she always has when she's on dialysis.

They haven't mentioned how long they want her here. No one has come back to talk more about the rehab once she gets out of here. I guess if their care plan of treating the thyroid and hormones work, then we'll start talking about that stuff next.

Thank you for the continued prayers and support!

The little we know for now

I didn't have enough new information to even post an update yesterday. I only have a bit more to offer today.

Yesterday they scoped her top and bottom and didn't find a thing. Other than the pain she experienced of the colonoscopy could maybe indicate some IBS. We've suspected something IBS or Gastroparesis for a long time but it's certainly not to blame for this sudden decline.

The Nephrologist and her PCP both think her transplanted kidney could be causing her issues. Except that most of the time when that happens the patient has a lot of pain around the kidney site and she doesn't have any. They think maybe the immunosuppressants she's on have made it impossible for her body to launch a proper response to the kidney going bad. The surgeon isn't ready to say he'll take it out and it will be next week before he makes that decision. There is always risk with any surgery and that's really the only downside to removing the kidney - if it doesn't work, it will have been unnecessary surgery. I'm a bit disappointed they are going to wait some more. The Nephrologist said if it IS the kidney going bad, then she'd feel better by the day after surgery.

Late last night they got the first lab work that came back abnormal. It was her TSH (thyroid) and cortisol levels. With both of them registering almost zero, they are now testing and evaluating all of her adrenal functions. If all of the adrenal functions are "off" then it could be her pituitary gland, which is the master controller of all of the adrenal glands. We were concerned upon hearing this as the pituitary gland usually only malfunctions due to an inoperable brain tumor. However, they think it's more likely also the immunosuppressants keeping her pituitary gland from working well.

So they are doing more investigative blood work and also some test in the morning where they test her blood, give her an injection of something, test her blood again in 30 mins, inject, 30 mins, inject, 30 mins. That will measure if they are able to artificially stimulate the glands.

I asked if these 2 things were related - the kidney maybe going bad and the glands not functioning right. I was told "no". They are separate issues. It still seems to me that they both point to the immunosuppressants, though. But what do I know?

The local Catholic priest came today and visited with us and prayed with us for what seemed like a long time. That was comforting and nice.

The only improvement for Maria is that they have found a perfect cocktail to manage her nausea better. She actually ate a little bit of all 3 meals today and that hasn't happened for weeks!

Please pray for guidance to all of the specialties involved with making care decisions for Maria. And pray that the tests tomorrow aren't miserable for her.

The support and love we get is truly humbling and we appreciate all of you so much!

These two sure had a love fest getting to see each other tonight. It's going to be a long road ahead without having Mama Mo at home.

Maria in the hospital

Quick backstory - Maria's transplanted kidney from Jan of 2003 failed and she had to start dialysis by Aug of 2015. She hasn't done well on hemodialysis and we knew that from 2001 when she was on it a year. She's been slowly not doing well over the course of this past year.

Then about 2 months ago she started to really not feel well. She started some symptoms that have been plaguing her and not getting better since. Last month she went to her primary care physician (PCP) and he ordered a bunch of tests. Nothing came back pointing to anything definitive.

In the last 10 days she has spiraled downhill. She's lost about 18 lbs, has started falling, is very weak, can't hardly eat anything, when she tries to eat it comes out both ends almost immediately, isn't sleeping well but just wants to be in bed.

Her dialysis people wanted her to leave dialysis on Friday night and go straight to the ER and be evaluated but we had a wedding to go to and went out of town briefly for that. So immediately upon our return, we went to the ER on Sunday. They ran a lot of the same tests her PCP had done just weeks earlier, and they also came back "fine". We were shocked they sent her home. The ER doc said, "Without finding anything wrong, what do you want us to do for her?"

So we arranged to see her PCP who was out of town until today. They squeezed Maria on to his already packed schedule. He had been up since 5 AM and had already reviewed everything in her chart including the ER stuff. He spent about 3 minutes in the room and said, "Ok, I think you need a blood transfusion and we're direct admitting you."

She's admitted at Christ Hospital now. (On 5 South until a bed opens up in 5 West.) Her PCP's Nurse Practitioner was in a couple times, her main Nephrologist came in, OT and GI were there. Nephrology wants to be sure we exhaust all other options before doing a blood transfusion as the transfusion can mess up stuff for a future transplant. Nephrology will pour over her chart and test results, then likely several docs from that group will discuss her case and see what else they can do to find a root cause. No one really knows why she's tanked so badly. I'm hoping maybe by tomorrow they might have a game plan.

We're just hoping they can pinpoint something and treat it so she can get over this hump. Meanwhile, she's gotten so weak that pretty much everyone agrees she probably needs to do some physical rehab after discharge. She was in rehab for 3 weeks a couple years back and it really helped her get back on her feet. The demands here at the house are really just too great for her to get the rest she needs to regain her strength in a positive way. Let's hope the insurance company agrees!

Huge thank you's to everyone who has stepped up and helped us already! At the moment I think we have things under control. I may need help during the 4 day week after the 4th of July as Gus doesn't have Conductive Ed and I can't take off work as the other recruiting leader is out on vacation then. If you have any ideas of care and entertainment for Gus for any of the days from July 5-8, please let me know!

All prayers, good thoughts, healing energy, etc, are greatly appreciated!

At the rate we're going, it could be a while if/when we find out what's going on with her but I'll try to keep things updated here.

Hoping that all of our family and friends are doing well and having a great summer!

Esther Lou O'Brien CD RA OAP AJP, 6/1/2004 - 12/21/2015

Goodbye, sweet Esther, my heart dog

My heart is heavy with grief as I write this post, which I will launch live once Esther passes on from this life in to the next. She is laboring awfully hard for each breath as she sits next to me on the couch. I'm trying not to watch the clock as the vet will come to our home in 3 hours and end her suffering. She's gone downhill very quickly in the past 2 weeks and our efforts to save her have failed. These valiant shepherds seem not to let on that something is wrong until it's too late. She was already full of cancer when we realized she wasn't well.

Esther had a rough start. She was taken at a few weeks old with her litter mates and many other German Shepherds from an irresponsible breeder who kept the winning show dogs in the house and let the others live in squalor. Her mother was such a mess, they had to put her down. Esther and her litter mates went to a GSD rescue and we spotted her on PetFinder. I loved her right away. We had to wait a couple weeks to go back and get her until she was 8 weeks old.

This was the day we picked her up to bring her home

Her puppy shot taken at Petsmart

Esther was the salve to our grief at the time after losing Maria's precious Idgie, a lab shepherd mix. Idgie and Ruth, a beagle, were Maria's dogs that I became step-mom to when we got together and were the first dogs I had ever lived with. So Esther was our first baby together as a couple and my first dog from a puppy ever in my life.

I set about being a dog owner much like I do everything else - all in and over the top! I read all kinds of books and took Esther to puppy class at Petsmart. That first trainer said, "You'll never get that dog to get over being shy and she won't amount to much." We changed trainers and found a great one up at Fields Ertel. We took every class she offered there and then joined "The Yappy Hour" there, which was an hour every Saturday morning where a group of us dog owners got together to let the dogs play and to reinforce the tricks and training we had already done. We would off leash heel all around the store with all sorts of distractions, we taught the dogs "go around" until they would go all the way down an aisle and back up the next one to come back to us. We clicker trained and learned tricks. We did sit stays and down stays in the middle of the store and went out of sight. We cherished these Saturday mornings together. We lived down in Northside at the time so it was a 30 minute drive. Esther would lie down in the back quietly until we got there. One day I was on the phone and accidentally missed the exit. Just as I passed the exit, Esther sat bolt upright and gave me a huge Yowl! I didn't realize until then that she knew the way so well.

Esther, left, and her friend, Lucy, after an exciting romp in the mud. They had so much fun that day until bath time!

Evelyn attended the Yappy Hour, too, and told me about agility and Queen City Dog Training Club, where she was a member. I decided to try it with Esther and signed up for classes. Little did I know how that would alter the trajectory of my life. I'm so grateful for Jim and Linda who were our first agility teachers. We kept training and learning agility until we were ready to compete in AKC agility competitions.

That first agility trial was in Dayton in the barn and I remember so well. We had Queen City Dog Training Club shirts and I didn't wear mine that first competition because I was worried that we'd be an embarrassment to the club. I was so ecstatic when we pulled off our first "Q" - that's a qualifying score. We kept Q-ing our way through trials, spending 2-4 weekends a month at Agility Trials and spending 1-3 weeknights at the club training and practicing. We met so many lovely people and their wonderful companions along this journey. I can't imagine life without having been a member at QCDTC and getting to know all our friends who have become like family.

Esther wasn't fast at agility and we had a very tough time making the time limits. She was a hard worker and seemed to say, "Don't rush me - I'm getting this right." The OAP and AJP after her name are agility titles - Open Agility Preferred and Excellent Agility Jumpers with Weaves "A" Preferred. At some point during practice sessions, Esther would do a jump or 2 and then would pull me over to the door to leave the club. Some vet visits and imaging later, we realized she had osteophites on her elbows and that the jumping was causing her pain. We did some therapy, kept pain meds on hand, and upped the supplements in her food to support her joints and she's mostly done well since stopping agility.

Once we couldn't do agility anymore, we dabbled around in all sorts of other stuff. She has titles in Obedience - CD = Companion Dog; and Rally - RA = Rally Advanced. We also did some herding and tracking. She was happy to just get out and be with me for anything.

Maria put the CD title on her

In 2007 when I started working from home, Esther was our only dog who would come and sit faithfully by me all during my workday. And she's always been such a good girl Even having work phone call after phone call, not many people ever knew I had a dog in the room. I remember one day I had gone downstairs to make a hot sandwich and I set down this steaming meat and cheese filled creation on the edge of my desk to go use the restroom. As I was in the restroom, I thought, "Oh boy, that sandwich is not going to be there when I get back!" But it was and I shared some with her just for being such a good girl.

When Esther was maybe 8 or 9 mos old, I attended a therapy dog certification class at Clermont County Dog Training Club. We got halfway through the test when the administrator realized Esther was not yet 1 yr old, which I hadn't realized was a requirement. They told me they couldn't believe how mature and well behaved Esther was and that we should certainly not be deterred and they'd love to see us again after she turns a year old. We did return and get her therapy dog certification and joined TPGC - Therapy Pets of Greater Cincinnati. Most of her therapy work was done at the Veterans nursing home down in Northern Kentucky. Those guys just loved to see her. She was happy to go and get pets and share love and then about an hour in to things, she would take me to the elevator and let me know she was all done. She was always very tired after visits.

Maria's health has required numerous hospital stays over the years and I would be allowed to take Esther in to Maria at the hospital, too. Back before we had Gus, Esther and I would stay the night with Maria. Esther would lay on the couch in the hospital room and it was pretty comical the workers' reactions when they'd realize there was a dog in the room. People could knock on the door and come in and Esther wouldn't bark in the hospital. She somehow knew she wasn't supposed to bark there. The hospital workers would often get all the way to Maria's bedside before Esther would lift her head up and look at them. Some of them were rather startled but everyone agreed she was so well behaved!

Esther was also my great protector when we lived in Northside and I'd walk to pick up pizza on Friday nights. There was a possum that would come through our yard at dusk every night and Esther would go crazy barking like mad at the back door while we said, "Possum". So, if I was walking at night in Northside and didn't like the looks of someone who was nearby, I'd whisper in her ear, "Possum" and she'd act all ferocious. People would cross the street or just turn around and go the other direction.

Our other shepherd is our worry now. She and Esther were so close. I hope she doesn't mourn herself to death. 

I think Ruth, our beagle, and so many of our other pets will have been there to welcome Esther home. Can't believe half the dogs in this picture are now gone. 

For all the joy, comfort, and connections she has brought to us and others during her life, I just hate this final part where she no longer finds joy or comfort in anything despite our best efforts and where she leaves this life alone. We once had a pet psychic come to the house and she said that Esther likes her name but that she really loves the special name I have for her. She's always been my "punkin". Her sweet, expressive eyes are deep pumpkin colored and she has some pumpkin or reddish tint to the tan parts of her coat, especially up around her head. And before this past week where she's taken on a sort of "I'm sick" smell, her head at the base between her ears always smelled to me like maple syrup.

I don't know how I'll go on without my most faithful dog by my side and you'll always be my "first", sweet punkin, my heart dog forever.

If you knew Esther and have a memory to share, I'd be most grateful for you to leave it here in comments.

Avoidance

Sorry it's been such a crazy long time with no posts. I really like to post good stuff! :)

Maria went through what I think was months of treatments for her kidney rejection that really took it out of her and after some illnesses this Spring it was determined it didn't really work and they can't do anything more for her rejection. We cancelled our dream trip to Alaska that was planned for early August. It's our 15th anniversary since exchanging vows coming up in August. Her nephrologist said no-go on the trip.

Now she's having to jump a million hoops to try to get qualified for another transplant. I'd say she's 9-24 months from another transplant and we're hunkering down. She starts hemodialysis on Tuesday. The hope is to get her on peritoneal dialysis but she has a surgery she needs soon and we thought it would be silly to put in the PD catheter, then remove it for the other surgery to happen, and then put it in again.

We wound up losing 4 of our kitties in about 9 months. That was sure something we didn't think about when we got so many of them so close together. The crazy thing is we still have a kitty left!

We did legally tie the knot and are thrilled to be legal in all 50 states!

We looked and saw we were spending more money on gas than groceries and decided it was time to move closer to everything so we worked hard to get our house sale-able, wound up selling it before it listed, and we moved to Sharonville on July 1. That puts us 30 minutes closer to Maria's hospital, to Gus's therapy in Covington, KY, and to most of our friends and family who jump in and help us out.

Since there are boxes everywhere we have been applying every avoidance technique in the book to keep from working on the house. It seems it's all we've been doing for months is getting ready for this move.

So, we took Gus to Cass Scenic Railroad State Park in WV and had a great time! Gus had a week off in between therapy sessions and by the time the next session ends Maria will be on dialysis so carpe diem!

Gus is truly doing so well in so many areas. He is able to eat just about anything now without choking on different consistencies. He can self feed nearly everything, which we know is HUGE. He can even drink from a regular cup with minimal spillage. We're still perfecting that skill. He is weight bearing really well and with support will move his legs. His army crawling has gotten better and in therapy they have him working on all 4's. He's been doing 5 days a week of Conductive Education from 9 AM to 2:30 PM. It's quite a challenging workout for him and we're so proud of how hard he works.

I had this idea that if we got a pool at just the right depth, it would help take some gravity off and he could get some therapy in that way and not even know it. He has taken to the pool like crazy and loves that he can "swim" by himself! The pool I got turned out to be about 5 inches more shallow than I was hoping but we're all still loving it.

Hope you are all enjoying your summer and keeping cool!

When no news isn't good news

I've been holding off posting with the hope we would have some good news. It's been more than a month now since we found out Maria was in rejection and these are the dark wearying days when the initial rush of rising to a challenge have sagged while the waves keep crashing in bigger and closer together.

So, I think a lot of our emotional disappointments have been that we were already on plan D for Summer Vacation and now we've slid back to Plan F, which is also the grade I give to Summer vacation 2014. This is my week off work for this summer. Friday night we decided to go to bed early, rise early Saturday, and head north to Paulding County, Ohio, for some fun but Maria didn't sleep much and was in so much pain Saturday morning that we spent many hours debating whether she should go right back to the hospital or not. She had just been released after spending Wed to Fri there last week. Ultimately, after speaking to her nephrologist, we decided to stay home and just drug her heavily, which got her over the hump. We were both fully disheartened after speaking to the doc as this is the guy we'd been waiting eagerly for to come back from his convention. I think we were both hoping he would return, review the chart, and have some brilliant insights and devise a great plan for getting her well. Instead, he was more of the tone that gee, they've run every test and checked things out, what more did we expect?

Sunday we drove up to just shy of Cleveland for a viewing and funeral. We spent the night and had a nice swim and ate inside an Ohio Buckeye's themed train before heading home. Bonus - it was all fully wheelchair accessible!

http://buckeyeexpressdiner.com/

We have another kitty, Celeste, going downhill. (We just lost a kitty 2 mos ago.) She'd had surgery Friday for an abscessed tooth so we picked her up Monday as we got back in to town.

Maria had to run out to get her blood drawn Tuesday morning so I got up with Gus and had a great plan for the day! Knock out Celeste's home care, feed and bathe Gus and me, pick up the house before Maria gets home, run a few errands together, and have plenty of time to take in the Red's game that evening! Reclaim the week!!!

Well, an hour in to trying to care for Celeste I am pretty sure I have not done anything right, she's bitten my index finger piercing through the nail bed from the top and another puncture on the pad, and I have wet cat food slung from one end to the other of my kitchen, all the while dealing with Gus whining and complaining constantly because I'm caring for the cat and not him. Maria calls about this time having finished the blood draw, and I just lost it. I am so sick and tired of no one being able to figure things out for her medically and I'm utterly failing keeping any balls in the air at home.

I manage to rebound enough to slap some food on a plate for my son when Maria calls me back, this time opening up with, "Listen, Christi, you're going to have to pull yourself together. I've been in an accident."

She was sitting at a stop light when a lady in a 2014 Lexus slams in to her from behind, causing her to hit the Volvo in front of her. My dear wife, who thinks of everyone else first, is so upset at having wrecked a car that was being loaned to us by friends, gets all the way through the police report and drives the damaged car up to other friends' body shop before realizing, "Gee, I don't feel so hot." Gus and I raced out the door to meet her at the shop so at this point we hand Gus off to our friends (thank God for the Boitnott's!!!) and head back to Christ to the Emergency Dept. Her transplanted kidney is in the front right where the seat belt comes across so they needed to check out the kidney to see if everything looked okay. Christ ER now has a "quick care" section so heck, while we're there, I get a tetanus shot and antibiotics for my stupid cat bites. For Maria, they don't find anything from the ultrasound but warn her that her whiplash pain is only going to get worse. I'm not convinced her kidney is altogether well.

So, Tuesday's blood draw was for her Wednesday transplant clinic visit. This middle of the week visit is the reason we couldn't get out of town for the week so we were going to take off Thursday and Friday for Lexington, KY, to go see the Horse Park. The folks at clinic had other plans. They said, "We penciled you in for a biopsy tomorrow." We counter with, "How about Monday instead?" Well, here we sit waiting for biopsy results....

We did get to the zoo for a few hours and went to dinner at the new restaurant that one of Maria's nurses and her husband recently opened. http://www.yelp.com/biz/angelos-family-restaurant-and-bar-independence

If you are near Independence, KY - go to Angelo's!!!

Okay, so, this just in, and I finally a bit of good news to share!!! The doctor just told Maria the biopsy results show definite improvement and she doesn't need any more treatments!!! Hooray!

Now, to salvage the final days of our Summer vacation....

Frustrations in Maria's treatment

We took Maria to the hospital Tuesday for a follow up biopsy and what we thought was a quick overnight. Some people even mentioned we could probably talk the doc in to letting us go that night and not even spend the night there. How quickly things change!

The biopsy procedure itself seemed to go better than the last one. Maria didn't have much pain. She asked for medicine in advance so didn't suffer the usual nausea.

I left her Tuesday early evening with plans to come back for her the next day.

Wednesday morning she called and left me a pitiful voice message about how much pain she'd been in from cramping almost ever since I'd left the evening prior. And let me tell you - Maria is no wimp about pain but this had her curled in to the fetal position and completely miserable, which is how I found her late morning when I arrived. The doc had been there already and was saying maybe she had C-Dif and they were testing for that. Maria thought maybe her gastroparesis was rearing its ugly head. But as I started talking to the many nurses we have known so long and asking if this could be related at all to the biopsy, they were all of the opinion this could be a hematoma. Maria's assigned nurse just gave her some pills to treat the symptoms and Maria pretty much passed out after that. When I left her that afternoon for a doc appointment of my own, I didn't even wake her up knowing how often she'd be awakened anyway and that she needed rest from her awful night.

Being away from her the rest of the day yesterday my frustrations only grew. Why does modern medicine seem to just throw pills at symptoms and not treat root causes? Maria's main nephrologist who sees her at the hospital is in San Francisco for some huge international transplant convention. Why can't things get done in his absence? What is the problem with making decisions here and taking action? If the biopsy results are back what else are they waiting for to determine if there should be more treatments?

After a demanding work day, a frustrating day of Maria's medical stuff, and then I got an uber cranky little boy in full meltdown mode handed off to me around 6, I was just done for the day. We were in jammies and in bed by 6:30 PM last night and even then it was another 90 minutes of fussing and screaming before we both got to sleep.

But, today's a new day! We were up early and after taking care of some work stuff, I thought I had an early enough start to get to the hospital and see the doctor but I missed him. There was at least some news and a little progress.

The biopsy shows improvement over the one from a little more than 2 weeks prior but it still shows cellular rejection and her antibodies are still too high, though improved. They do want to do more treatments and they actually started more thymo last night. What I didn't fully realize and learned today is that the plasmapheresis takes the thymo out of her blood so they have to be careful about when they do that. And, the antibodies can have more opportunity to attack the kidney as a result of the thymo. So, being in both forms of rejection is really pretty tough given that the therapies for each combat each other. Ugh!

This afternoon the doctor called her and here's the plan for now: No more thymo after last night. Plasmapheresis tonight and Monday, which pairs with the cancer drugs, too. She has a clinic (kidney transplant clinic) visit for Monday. I just pray that her normal Doc is back from CA and sees her on Monday to make sure all of these decisions are solid!

So far they aren't talking about another biopsy, though I would think another is in her future...?

We appreciate your continued prayers, thoughts, and support!

And here's the picture worth a thousand words as to what the stress of a sick mama and the hard work of going to Conductive Ed 5 days a week has on a 3 year old!

Another biopsy tomorrow

Time will tell its tale after we get results from a biopsy that is being done Tuesday morning. We should know about the cellular rejection tomorrow by end of day and about how the kidney is holding up with the high antibodies by end of day Wed.

Maria had another treatment today - plasmapheresis, solumedrol, and the chemo drug. It sure does take it out of her. And her poor arm where her shunt is being accessed is very swollen and bruised. She's not allowed to lift over 5 lbs with that arm. You don't realize all the things you lift in a day over 5 lbs with your dominant arm until you aren't supposed to do it! Add having a disabled toddler in the house and well, you get the idea.

She has been an absolute champ considering the high doses of steroids she's been getting! I would be crawling the walls and taking everyone's heads off!

We leave early in the morning for the hospital. I'll post results as they come in.

Thank you as always for your continued love, prayers, and support! It surely does take a village!

Maria giving her own update - that's a good sign!

I am sorry it has taken so long to update you all on my health. The last week and a half have brought some major changes in my life. I am in rejection of my transplanted kidney but it seems as though it may be able to be saved. While in the hospital I received a series of medication of thymoglobulin and steroids to help stop the rejection. Both of which had some pretty nasty side-effects. now in addition to those treatments I am receiving apheresis dialysis to rid my body of the antibodies built up against my kidney and two more chemo drugs to keep my body from making the antibodies again. I have had two of these treatments and will have another two before having another kidney biopsy next Tuesday. Hopefully, that biopsy will come back and the rejection will have stopped. If not, I will get four more apheresis and chemo treatments. I am pretty wiped out and sick to my stomach on treatment days but feel better by the next morning. I am encouraged that everything is working the way it should because my numbers are coming down closer to normal. I am not there yet but I have a lot of hope. I can not tell you how much your prayers and comments have helped. I am so grateful for all of you in my life. Please keep praying that my kidney can be saved and things can return to normal. Thank you again.

Turning a corner?

Today's news was all much more positive!

The doctor who saw her today thought that the treatment is already showing signs of working and stopping the rejection! I try not to think about the damage the kidney has suffered in the meantime and the years it takes off its life and just be grateful for every day it does its job.

Because my Maria follows her own path even with her illnesses, a whole team got together today and reviewed her case. They have determined they still want to do plasmapheresis. I'm not sure when that will get scheduled - perhaps Thurs or Fri. Her central line went in today and they have decided she can get a porta cath when that comes out. That's a more permanent access so they won't have to keep doing central lines.

She is getting her thymo treatment tonight and she hasn't answered the phone so I'm thinking they had to knock her out again.

No one is speaking the d word yet - discharge. It will very likely not happen until Fri or Sat.

Meanwhile, this boy wants to be back in Mama's arms! He started back at conductive education today.

Day 3 Kidney Rejection Saga

Today wound up being a good day.

She didn't need the thymoglobulin today because her t cell levels were still showing enough suppression. I've been reading up a bit on how this all works and basically, "thymoglobulin effects large reductions (through cell lysis) in the number of circulating T-lymphocytes, hence preventing (or at least delaying) the cellular rejection of transplanted organs."

They believe she will certainly need it tomorrow but from what I've gathered it's a bit of a tightrope to give enough but not too much of the thymoglobulin.

We enjoyed dinner together from the food I brought her from Aunt Missy’s birthday party. Happy Birthday again, Missy!

Tomorrow Maria will have some sort of line put in. There has been an ongoing debate every time she is hospitalized about whether or not they should put in more “permanent” access or if they should keep having to put in central lines each time she needs stuff. I think the plan is for a central line at this point. She’s been through so much that her veins don’t keep IV’s for long so the central line makes things easier for IV meds, blood draws, etc.

We’re just tucking in for a big week here as Gus heads back to Conductive Ed and I have a work trip to Nashville this week. 

Here's Gus sitting on my office chair "helping" me with my work! Before conductive ed he would not have been able to sit on a chair like this that swivels, where his feet don't touch the floor, and he doesn't have armrests to grab. He was in the process of going from leaning back to upright in this picture!

Day 2 of Rejection Saga

Thank you so much for the incredible outpouring of love and support! It's knowing you are all in our corner that keeps us going!

Maria had a horrible night but all in all there are glimmers of hope today.

The thymoglobulin has violently horrid and immediate side effects. She had her first round last night. After a series of weaker medications which they attempted to ease things for Maria over the course of about 5 hours, they finally gave her dilaudid and she just passed out. When she came to this morning and then got a little more rest, she had a pretty good day.

They had scheduled her to go ahead and start the plasmapheresis today but they called it off and have decided to hold on that until Monday and evaluate again whether to include it.

Her biopsy results today were not showing a lot of damage from the antibodies. So, there is still concern there since the blood results for the antibodies are so high but with the kidney not showing much distress from the antibodies. they aren't sure the plasmapheresis is necessary.

The plan for now is to monitor what the thymoglobulin does and react accordingly. As mentioned yesterday, that is administered IV only. She will get 5 treatments of that every other day. So, she had a good day today because she didn't have to do that. We're buckling in for tomorrow.

As of this moment we are predicting her being hospitalized until at least Tuesday and it's possible they'd keep her until Saturday next week to do all of the thymoglobulin treatments inpatient given her awful reaction. Time will tell.

Through the generous help of family and friends, I think we just may have this coming week covered for Gus. If Maria gets released and has to be transported for appointments, we're still short there, but there are so many unknowns it's hard to plan for that.

Her normal cocktail of anti-rejection meds is also being adjusted with the hopes that this rejection can be halted and she can go on from here.

Aunt Missy says Maria got her best medicine today out of her visit from Gus. We took his walker/gait trainer and Gus made Mama march through the halls twice to get some exercise. In the patient waiting area was a table he could get right up to so he happily played trains there for quite a while. It was good for all of us to just sit and do something so normal.

At some point, probably in about 2 weeks, there will be another biopsy to evaluate progress.

I snapped this picture yesterday because this sight took my breath away then and it still chokes me up now. This beautiful woman reaches that hand out straight from her heart. It's the hand I nervously yearned to touch 16 years ago, flush with new love; the hand I held as we exchanged vows 14 years ago and I slid that ring on to her finger; the hand that has extended comfort to so many of our pets as we've had to say goodbye to them over the years; the hand that touched my belly in wonder with the knowledge a new life was happening there; the hand that was the first one our newborn son gripped though his premature hand didn't even wrap all the way around one finger; the hand that had to hold his as he slept in his bassinet every minute of every night for the first year. Here is that hand reaching towards me as she lies vulnerable and worried for what's to come.

Three squeezes, baby, and you better keep squeezing back!

Rejecting kidney

The news for Maria here isn’t good. Bottom line – she’s in rejection.

Let’s talk about types of rejection first. There is cellular rejection and antibody rejection. Cellular rejection is somewhat common and is the type that Maria had a couple times within the first 6 mos of her transplant back in 2003. The other type is antibody rejection and that’s the big bad boy who wipes out transplanted kidneys, though both types can end a successful transplant.

Based on the biopsy results, Maria is definitely in a cellular rejection. This one they are thinking is at least type 2A, whereas her previous rejections were 1A. The doctor says that is quite a bit more serious.

Possible double whammy alert – There is a “smoking gun” that this could also be antibody rejection. When they tested her antibodies in 2012 they were fine and this time around they are sky high. The biopsy won’t tell its tale on antibody rejection until tomorrow.

For now, they are treating the cellular rejection. That involves IV meds, thymoglobulin, which can happen inpatient and/or outpatient.  They pair this with solu-medrol.

If there is also antibody rejection, then the treatment is more involved. They have to do plasmapheresis to do something with the antibodies. It works similarly to dialysis. Maria has a working shunt but has never had it accessed for dialysis so there is some anxiety for that.

Whether or not the kidney can be saved, the probability of saving it, and the exact treatments are all up in the air for now and I’ll give more details as they unfold.

What we do know is that Maria is hospitalized through Monday at a minimum. Even if she gets out of the hospital Monday or soon thereafter, she will have a slew of outpatient appointments and treatments for a minimum of weeks.

This throws us back to that vulnerable place where we can’t do it all alone. I don’t know exactly what we need or when but I can tell you we will need plenty!

Gus starts back with conductive ed on Monday. That’s getting him to Covington 5 days a week from 9 AM to 2:30 and back home again.

I have no idea what shape Maria will be in to drive or not but she will need to make frequent trips to Christ Hospital for her outpatient stuff. We went down to 1 vehicle to afford the wheelchair conversion so if someone else takes Gus and our van to school, Maria doesn’t have transportation even if she can drive.

Problems for another day….

We appreciate the blessing of you all, our family and friends, more than we can say! Please keep praying! 

Botox From Maria's Perspective

As a child Gus's age, I was very ill. Many nights were spent in hospitals with high fevers, infections and kidney disorders that the physicians just couldn't figure out. Tests upon more tests in facilities that were not meant for children but because of the insurance that my family had, were the places that I had to be treated. I was held down and stuck with needles. Often more than 5 times because my veins were so bad. I was allergic to almost everything that they gave me and so vomiting became a way of life. No one at the time thought a child should have procedures or tests explained to them and my parents did not even understand what was being done to me so I was left with out any information. The memories of all this have left me deeply scarred. So when Gus was diagnosed with PVL and CP I knew what lay ahead for him.

From his birth we have always tried to do what is best for him. We have tried many therapies and researched many more. When Botox was mentioned, I was very apprehensive. No way am I holding my kid down and letting someone stick needles in him, even if it is the best thing for him. I am not strong enough. But as the years and Gus's CP have progressed, we researched the Botox therapy and decided that is was Gus's best chance to reach his potential.

I knew what was going to happen yesterday. I was assured by other parents, therapists and doctors that the procedure would go quickly and that the numbing cream plus the cold spray would lessen the burn of the injections. For those of you that don't know, inter-muscular injections usually contain HCL to break down the tissue enough to allow the medicine to work. HCL is Hydro Chloric Acid. It hurts!

I was torn as soon as the appointment was made. I knew I could not hold him down. I didn't know if I could be in the room with out getting upset. In January when Gus had to be admitted to the hospital, I could not be in the room when he had his IV put in. I got upset. I made his experience mine and could not let that happen in front of him so I left the room and Christi stayed. I was a coward.

So yesterday I was determined to not leave the room. I could not hold him down but I would stay and try to provide some kind of comfort or at least try to make sure things went as smoothly as possible. The doctor did try to explain what was happening while she did the injections. Other hospital staff was there to assist Christi in trying to provide a distraction. But nothing distracts you from that kind of pain. My son cried. He cried out, "Mommy!". And in that, "Mommy!", I heard, "Why is this happening to me? Why are you letting them hurt me? Why are YOU hurting me? Help me! Help me!". The procedure took less that 10 minutes but seemed to last forever. I swallowed the acid that boiled up from my stomach and did not shed a tear. Christi held him and his tears lasted only a minute. I told him he was brave and that it was over (for now). The  doctor spoke to us gently and said this was the best way.  I believe her but it comes at a high cost.

My son learned that I would allow him to be hurt. I do not know that he understands that it was for a good reason, no matter how many times it is explained. As an adult, I understand now how some things are necessary but even with that perspective,  I know it is an experience that will shape him. He has already asked for the doctor's name and how to spell it. He is preparing for the next time all ready.

Yesterday, I laid an awfully heavy burden on my son. Endure a painful procedure so that you may not have to have your hips pop out of socket, you can sit up, stand and maybe even walk. It is a horrible price to be paid by a three-year old. I wish I could pay it for him but I cannot.

We have seen little signs that the Botox is working. He seems more flexible and less spastic. I still ask myself, "Is it worth it?". I hope it is.

Botox was the worst thing I've ever seen happen to my kid!

Botox was the worst thing I've ever seen happen to my kid!

So, we went for Gus’s first round of Botox yesterday. (Don’t know why and how Botox benefits kids with CP? Article, though 10 years old, is still relevant, click here.)

Somehow I thought because we applied a numbing topical cream and left it on for over an hour, because we brought some really fun and exciting distractions for Gus, and because we had Child Life come in and be involved, that there would only be minimal pain and we could keep him from thinking about it while it was happening. THIS WAS NOT THE CASE!

First they laid him on his belly and he doesn't have much good control from there. Then the doctor used her weight to kind of sit on his butt while a nurse restrained his legs. Then they used the needles to do about 8-12 injections from his hips to his calves.

I was laying on my belly next to Gus managing the distractions so I didn't watch the procedure. With the first needle insertion he fussed and said, “Ow, ow, OW!” Then the burning must have started because his whole body went rigid. He yelled for Mommy and asked for it to stop. When it didn't and the needles and burning kept coming he just sobbed and I mean body wracking sobs and when he’d catch his breath he’d yell, “MOMMY!” over and over. These were the worst moments of my life and haven’t stopped haunting me since yesterday.

When they were finally done with the injections and I sat up so I could scoop him up, I was horrified at how much blood there was. Okay, it wasn't a ton but probably quarter sized smears around the sites on the last leg they did.

Maria was on the other end and watched the procedure. Her comments were:

“I didn't know they went so deep with those needles!”

“I wanted to vomit.”

The doctor said that the big kids tell her it burns for a few seconds and then it doesn't hurt again. Gus did seem to bounce back quite well and we pampered him the rest of the day. He got to go see the new baby giraffe at the zoo, he picked the restaurant for dinner (Bob Evans), and he got ice cream for a treat, etc. Maria and I avoided discussing our horrors in front of him but when I put him to bed that night and left the room he cried and wanted me to come back. Going in to talk to him, he opened up the topic with, “The doctor hurt my legs!” So we talked about it and I did the best I could to try to tell him that even though it was awful and it hurt, we are hoping it will really benefit him and help him move and feel better for a while. And I told him I was sorry, though sorry doesn't seem to begin to cover it.

Interestingly, he asked me the name of the doctor and even how to spell her name. She is most certainly on his hit list!

Kidding aside, this has really got me thinking about the psychological impact of this sort of experience. How terrible must it be as a child who trusts you to witness his mommies allowing this to happen to him? This is a kid who fake coughs and says he needs to go to the doctor to “feel him better”. How will this change his perception of doctors? Will he believe us anymore when we tell him things?

I feel terrible and that I should have, at the very least, prepared him better. I didn't tell him it was going to hurt so much or talk enough about why and what we were doing.

Perhaps the worst part is that I’m weighing in my mind what would make it worth it to do it again. Really?! Is there ANYTHING worth putting him through that experience again? Where is this coming from? Are we so desperate for him to walk someday that we would trade his innocence and trust for it?

So, this afternoon when I pulled his chair back from his table he actually placed both of his feet up on the table’s ledge. I gasped and showed Maria. We were told not to expect to see any results from the Botox for a week or two and here, 24 hours later, he’s done something that’s never been possible for him before. He could maybe do that with his right leg, though I don’t believe I've ever seen it happen but his left leg doesn't seem to have much voluntary movement at all so no way that’s ever happened.  And, though I hate myself for it, I find myself thinking, “If we get this in 24 hours, what else might happen? Where is that phone number to schedule his next round of Botox?”

New Power Chair - Permobil K300, C300 ; and a test walk in the Upsee!

This cool kid is so very excited to have his new power chair! For the first almost 2 weeks he wanted me right by him and to have my hand over his then all of the sudden he had it and to say he was off is an understatement! Now he'll crank up the speed, yell, "Ride the Wind Bullseye!" and then look out! If I try to put my hand on the joystick now he pushes me away!

It was about a year ago that we requested an equipment evaluation at Perlman Center. After waiting for that appointment and then going through many appeals of the denial by our insurance company, we finally got his chair! He was excited from the beginning. Here he is getting seated in it for the first time. At the end he says, "It's my power chair!"

Here's his first test drive:

Then today Gus got to try out the Upsee at Perlman Center. Ours is supposed to get shipped out to us from the UK sometime the week of May 19 and I'm even more excited about it now that I see how well Gus does in it!

From our family to yours, we hope you had a blessed and wonderful Easter!

Conversations with Gus

  Mommy: "Are you all done?"
Gus: "No, not yet."
  Mommy: "How about now?"
Gus: "No, silly!"
  Mommy: "How about now?"
Gus: Giggles
  Mommy: "How about NOW?"
Gus: Sternly "Mommy, that's too much."


Gus: Bored and restless, doesn't want to wait in line. "Can we go now?"
"Is it our turn yet?"
  Mommy: "Would you like to turn around and meet the girls behind you?"
Gus: "GIRLS?!"


Mommy and Mama pick up Aunt Gaga from work to come with us
Gus: "I love Aunt Gaga! Is she coming with us?"
  Mommy: "Yes"
Aunt Gaga gets in van.
Gus: "Hi Aunt Gaga!"
  Aunt Gaga: "Hi Gus"
Gus: "Aunt Gaga?"
  Aunt Gaga: "Yes, Gus?"
Gus: "How is your work?"
  Aunt Gaga: "It was pretty good today, thank you, Gus."
Gus: "Oh good!"


Mommy lays Gus down to sleep.
Gus: "Mommy, where's my music?"
  Mommy: "Oh, I forgot to turn it on."
Gus: "You can turn it on on your computer."
  Mommy: "I was going to use your iPad."
Gus: "Where is my iPad?"
  Mommy: "Up on the dresser." Mommy goes to get the iPad and opens it up to find his nighttime                      playlist. Usually, Mommy asks Gus at this point which song on his playlist he'd like to start                 with but...
Gus: "Mommy, you can pick tonight."
  Mommy: Selects Gus's most oft chosen first song and it starts to play
Gus: "Frozen! Good choice, Mommy! You're a good girl!"



Mommy and Mama: Never taking a word their boy speaks, and speaks so clearly and eloquently at that, for granted! "Thank you God for our funny, precious, funny, thoughtful, talkative boy!"

Lights fade