Nikolina, A Few Years Later

I don't usually double-post, saving the Clan of Mahlou bog for the more detailed family issues and 100th Lamb for the more general topics, but there was a time when readers of this blog were following the story of NBikolina and so I am posting here the update I posted on the Clan of Mahlou.

I think when my logs got hijacked, Nikolina was still a toddler. Well, she is now in first grade! For those who have followed her from her Miracle Baby status at Stanford University Hospital through the hack date, I have exciting news.

She not only survived, but she thrived. She is a happy, pretty, bright little girl today who loves to ride therapy horses, does well in schools, handles technilogy with zest, and spins around in her wheelchair with zip. She actually can walk, but slowly, with hot pink braces.

School was a challenge medically, but the school invited my daughter-in-law to come to school all day every day in case of medical urgencies and emergencies, and that has worked. Nikolina is not overwhelmed by Mommy, because Mommy helps out all the classes yet is close by for changing ostomy bags or recognizing the need for a dash to the local hospital in Sacramento -- as y'all might recall, they were in the process of moving there when the blog went blank -- or a longer ride to Stanford.

As for all the rest of it, Nikolina leads a normal litlte girl's life: she has birthday parties and goes to birthday parties, loves her cat and big brother, visits Disneyland, plays with other kids, and anything else one would imagine as part of a child's life.

Never out of the woods but oh, so far from the beginning of the path...and so much more light shining through the trees!

Million-Dollar Baby

The first bill for Nikolina has arrived. Definitely, it is only the first since she is still in the hospital following the surgery to put her spine back where it belongs. But the first bill is enough to know that these things are out of our hands. Shane and Lemony now have a million-dollar baby. To be precise, the bill was for $1.3 million.

So, what does one do? Laugh and leave the payment of the vast majority to the insurance company (which may have a cap of $1 million in a lifetime). Then, Shane and Lemony will have to turn the rest over to God. Of course, we will help. We did so unintentionally when Nathaniel had his kidney surgery years ago. The hospital grabbed $14K that I had had Shane put into his account so that we would have moving expenses taken care of upon our return from Jordan. Well, the bottom line is that the hospital got the money I needed for moving, and I ended up with alternatives to a planned, normal move, including living with Shane, Lemony, and Nathaniel until I had earned enough money from my new job to pay all the rent, deposits, and the like while Donnie remained "stuck" in Jordan for six months. ("Stuck" is the wrong word because Jordan is a great place to live, as well as relatively inexpensive, and Donnie was able to maintain a part-time job for four of the six months.) Once back in the USA, we lived without furnishings for a while. No big deal. I had a table and an air mattress. My computer was a laptop, and we had a carpeted floor. So, nothing more was really needed. With time, everything got replaced or moved or turned around, and now we can help Shane and Lemony (and our other kids) a lot more than back in 2006 when we first moved back to the USA and its capitalistic economy, which can sometimes bring people to their knees. (Maybe that's not such a bad thing, either.)

At least, the bill does not have to be paid today, which, considering the $4K Shane needs to fix his car which has broken down just at the wrong time (not sure, though, that there is ever a right time, and certainly my family, like most people, have been through worse days) and the current negative balance in my checking account (see my post on Justice or Mercy, as well as the comments to the post), is simply a laughable thought.

God will provide. We just have to wait - and so will Stanford. Been there, done that, as they say, with our other handicapped kids. It does have the effect of keeping one humble. The only thing one has to show off for one's hard-work-produced-income is that one's kids are alive. Come to think of, I cannot think of anything better to show off. Can you?

What a Wondeful Day It Was!

Yesterday was the most amazing day. Seriously! No tongue-in-cheek intended here.

First thing in the morning, Lemony dropped Nathaniel at school and picked me up in her rental car. (Shane's and her car broke down while Nikolina was hospitalized at Stanford--transmission needs to be replaced.) I could not drive because our battery was not working; Donnie had had to call AAA from the hospital parking lot the day before when the car would not start, and the battery had to be ordered.

While I was waiting for her, I remembered the financial issue that had been hanging around for a few days, jumped online, and discovered a deus ex machina resolution to my financial problem. An amazing solution -- but I am getting so spoiled by God pulling my family out of the muck all the time that I was not even surprised. First, earlier in the week, in order to overcome the sizable deficit caused by my not canceling an automatic payment when I chose to send in a paper check through the mail (thus paying twice and unable to get the money back in any kind of timely fashion), I had made arrangements to use savings and max out the credit cards with advances. That earlier morning, however, when I got up and checked the bank balance before going to the bank for the advances, I found that all the rest of the automatic payments for the month had been sent in and cashed, bringing the negative balance to a level beyond my capacity to make up in the manner I had planned. (I have no idea how the earlier release date got on those checks. I must have made a typo on the automatic payment date for them, but that seems strange. Possible, but truly odd and unlikely.) So, I was left with an impossible situation. What a crazy answer to a prayer for help! But God knows best, so I figured that since I could not catch up the account, anyway, I would not even try, especially since the amount I was able to round up would bring the negative balance to exactly $-666, and I did not like that number. I would just wait and see what would happen. Well, what happened was a bit extraordinary. First, the bank paid everything. Not maxing out the credit cards turned out to be important because we needed to put the car battery on them, as well as some other things that came up associated with Shane's emergency and other unexpected "activities" of this week. (Had my plan to fix matters myself worked, we would really have been stranded.) Then, yesterday, I saw that on Wednesday some per diem I was owed had come in, but for twice (!) the amount I expected. I was then back in the black by a few cents, and of course everything was much better Thursday morning, which was pay day.

This is why I never worry or even think again about any problem after turning it over to God: because God fixes things so well! (Well, there was that one time that I did worry, and God made it very clear to me that I should not do that; I never have again, at least so far.) My experiences in this vein have, I suppose, turned me into a little kid, always expecting the parent to rush the rescue. Actually, I never ask to escape the bad. I don't even worry about bad things happening; they happen, and that is inescapable life, free will, bad genes, evil-doers, and all that. But I do expect to be rescued. I also know that something good will come from the bad stuff, and I am curious enough to want to see what it is. I do bring the bad stuff to God's attention because I think it never hurts to ask, but generally I only ask once because somehow I am pretty certain, given the complications of our lives, that God must have us on a weekly checklist: "clean up this week's Mahlou mess."

So, Thursday morning started out easy! Little did any of us know what was to come!

After being picked up, I watched Nikolina while Lemony went to visit Shane in the hospital. Shane's appendix, it turned out was not about to rupture as the doctors thought Tuesday evening. It had already ruptured several days earlier, but apparently the concern over Nikolina's spinal surgery and the trips back and forth from Stanford kept him ignoring the pain. Only after Nikolina was home did he realize that something was wrong. Very wrong, as it turns out. He was full of gangrene. The appendix has been removed and his insides scrubbed. He is on mega doses of antibiotics, to which he seems to be responding well. The doctor has maintained a partially open incision because with Shane having a fever that comes and goes, the doctor is not certain that he got all the infection out. So, we wait. Until Monday, we are told. At least, Shane is now allowed visitors (initially restricted), and both we and Lemony have visited although yesterday Lemony's visits were abbreviated and between my babysitting duties and Donnie's trying to get a battery for an older car and wire money to Blaine (whose car had also broken down) -- once again glad that we had not gone ahead and maxed out the credit cards, we were not able to visit at all. But all of that was but a hint of things to come.

Not long after leaving for the hospital, Lemony returned home with Nathaniel in tow. The school had called about ten minutes after she arrived in Shane's room to ask her to pick up Nathaniel who was being sent home with conjunctivitis. She had to take him to the pediatrician, who is in a city south of us by about 20 miles. Most of her afternoon was spent on that while I got to teach Nikolina pattycake and other baby games that her great-great grandmother taught me. (It's interesting to see how, as a grandmother, I instinctively mimic my grandmother, not my mother nor myself as a mother. Odd!)

Lemony returned just in time for me to give Nathaniel a hug, and then both of them went off to open house at school. Donnie showed up at Lemony's with a working car, and we were just beginning to relax from all the stress and trauma of the past week, beginning with Nikolina's surgery, when all the lights went out. A helicopter that was helping to put out a forest fire several miles away had flown into the power lines and knocked out the electricity and cell phone tower for three towns. Lemony came home, left Nathaniel with us, and went to the hospital to confer with Shane on next steps. Nikolina was not tolerating the 100+ degree weather without air conditioning, and not having a working phone in an emergency was a concern.

Shane and Lemony found a hotel for Lemony and the kids about 30 miles north that had electricity and air conditioning -- and space. Off we went in our two-car caravan. (We did not want Lemony driving alone without a working cell phone.)

What fun! After settling Nikolina and Lemony into the hotel (Nikolina immediately perked up), we picked up some snacks for the next morning for Lemony and kids, gas, and dinner at Denny's. (Once again, I was glad I had not maxed out those credit cards.) After dinner, Nathaniel and I had fun splitting a root beer float: I drank the root beer, he sipped the "fuzzy stuff," and we split the ice cream. Then he proudly carried Lemony's dinner that we had ordered for her as take-out back to her at the hotel. As I left, I turned to say goodnight to him, but he was fast asleep in the bed, shoes and all!

We arrived back home at midnight and went straight to bed but not before offering a prayer of gratitude for once again being spoiled. Fixed finances. Car that works. Shane out of danger. Nikolina home (well, hotel, but better than the hospital). A day spent with family, which is hard for me to get, given a job that has me traveling frequently. And important lessons taught (and, hopefully, learned), such as

(1) Family is more important than work;
(2) Family bonds are built through time spent together, even if it is shared trauma;
(3) People have physical limits -- we should keep those in mind and enjoy our family and friends every day, treating them as though we have limited time with them because we truly do;
(4) There is no problem that God cannot fix better than we can try to mend ourselves:
(5) God will come through for us, just perhaps not always at the time or place or in the manner we anticipate;
(6) Cars, modern conveniences, things -- none of these are more important than relationships with family, friends, God;
(7) It is important to stop and smell the roses -- had not all these things happened this week, I would have been at work from 8-8 and would not even have seen the roses, let alone stopped to smell them; it is important to remember that life is for the enjoying, the valuing, the gee-whizzing, and the thank-you-God'ing, not for burying ourselves so deeply into our work that miss out on the wonder of it all;
(8) It is okay not to be fully mature, to run to God whenever help is needed;
(9) We can trust God without reservations of any sort; we don't have to worry (we simply choose to); and
(10) God likes to spoil us.

Yesterday, Lemony asked me rehtorically, "When is this all going to stop?" Ah, she has missed the point. It may not stop. Life is what it is. It is not important that the bad stuff stop because God will fix it, God will use it to teach us important lessons, and in many cases God will use the bad for ultimate good, often widespread good for many people. In the end, if we let Him, God will spoil us.

God, for sure, spoils me and mine. But you don't see me complaining!! As Nathaniel recently said to me, "Grandma Beth, you spoil me, but that's okay because I love it." Likewise, I say, "God, you spoil me, but that's okay because I love it!

What I Was Going To Write Today

This will be a brief post because there really is not much to tell. Nikolina came through the surgery just fine. It turned out that of the prolapsed intestine, the doctors only had to remove 2 cm.

The surprising main difficulty was finding an intensive care unit for her post-surgery. Because OEIS Complex is so rare and so complicated, none of the pediatric intensive care units felt comfortable taking her. That was a bit unnerving -- if nurses are afraid of her being too complicated to care for, what does that mean for us, her parents and grandparents? I suppose that the saying, "ignorance is bliss," is rather pertinent here. If one doesn't know enough to be afraid, then one ends up treating her just like any other baby--and enjoying her, leaving the harder stuff to God.

Nikolina did find a post-operative home. The NICU (newborn intensive care unit) is not supposed to re-admit babies who have been discharged (germs from the outside world and all that), but since no other unit would take her and the nurses in the NICU have two months of experience in taking care of her, there is where she is. God willing, she will be back home with her parents soon.

Thanks to those who have told me that you are praying for her! She is also back on the prayer list at our Old Mission Church.

Good night to all! I am looking forward to a positive update in the morning.

It's Raining! It's Pouring!

Nikolina, as I posted elsewhere, came home yesterday evening, and we had a right fine celebration at Pizza Factory with Donnie, Shane (our son), Lemony (his wife), Nathaniel (our grandson), and Nikolina. As we were finishing, Fr. B and the staff from the local retreat center quite coincidentally showed up, and they all got to meet Nikolina and be rewarded with her infectious smile and highly social, happy eye contact -- she's an extrovert and already a bit of a flirt. (Fr. B, early on in Nikolina's surgical odyssey, celebrated a mass for her and for all of us.) We all left in jolly spirits.

However, the saga is not over, and I am not referring to the fact that Nikolina still has a series of operations ahead of her. Since it never rains, but it pours, we should not have been surprised that Shane ended up in the hospital within an hour of Nikolina's homecoming. We spent about six hours waiting for CT scan results only to learn that my diagnosis was accurate: appendicitis. (I want an honorary medical degree; I think I've earned it!) The appendix is getting close to rupture stage so the doctor would not let Shane, who, like me, has a very high threshold for pain, wait until his day off to do the surgery. It will be done the very first thing in the morning.

Goodness, I never thought I would be doing a post on Shane. He is the perfectly healthy child between two seriously handicapped ones. I cannot remember Shane ever being sick except for about a year with periodic migraines, which he learned to control, using biofeedback. (I control mine that way, too. Surprisingly, we each taught ourselves how to do it, which mightily impressed the doctors in both cases.)

In any event, it looks like life has become just a tad more complicated. I will need to take some time off in order to help Lemony with Nikolina so that she can be at the hospital with Shane and take Nathaniel to school. (Nathaniel was with us after school today.) It is sort of like the game of musical chairs, only its musical kids. Memories of our children's younger years -- musical kids then, too -- flood back these days.

So, it looks like we are going to have to ask for God's help again. I wonder if God ever gets tired of pulling one family out of dilemma after dilemma? I hope not because we are still living in the Land of Splat!, where we really depend upon God to get us out of all that muck that ends up covering us from time to time!

Briefly, Nikolina

Nikolina is still in the hospital, but we are hoping for a next-week discharge. She continues to be naughty -- refusing to be wired or tubed. That strength of will is probably what got her through all that initial surgery. Generally, though, she is very easy-going, and I thought a picture of her would tell more about her than all the words in the world. So here is photo of Nikolina after being patched up and before going back for plumbing repair!

I have added a section on the right of this blog, called Twitterlets, and I will keep readers updated on routine progress there, but comments are always welcomed on the posts about Nikolina.

Many thanks to all of you who have prayed for her and who are continuing to pray for her. I put her back on the mission prayer list. Looks like this will be an on-again, off-again, on-again thing for a while.

Prayers for Nikolina

We knew the day would come that Nikolina would need to return to Stanford for some serious neurosurgery. It is here, and we are asking for your prayers.

Donnie and I have enjoyed the past several weeks, being able to visit our son, Shane, and his family and play with both our grandchildren, Nathaniel and Nikolina. Nathaniel is a great big brother, not jealous, just loves his sister, and understands some of what is happening because he himself had a serious kidney problem when he was born (now just a bad memory).

We have some better pictures of Nikolina now, and I have managed to add her history to my family site, The Clan of Mahlou. Pictures and short bios of both the grandkids can be found there.

Nikolina's surgery is scheduled for Wednesday. She has a lipomeningeomylocele that has to be repaired. The most unnerving part is that nerves run through the area that has to be cut open. Right now, it looks like Nikolina, unlike her aunt who also has spina bifida, will be able to walk. She moves her legs and feet in all the right ways. However, any nerves that get in the way of the laser may result in some form of paraplegia. Please pray for steady hands and strong eyes of the neurosurgical team. I know that God is watching over Nikolina or she would not have made it this far, but I think it never hurts to let God know that we care, too.

Nikolina Update

This will be a brief post because there really is not much to tell. Nikolina came through the surgery just fine. It turned out that of the prolapsed intestine, the doctors only had to remove 2 cm.

The surprising main difficulty was finding an intensive care unit for her post-surgery. Because OEIS Complex is so rare and so complicated, none of the pediatric intensive care units felt comfortable taking her. That was a bit unnerving -- if nurses are afraid of her being too complicated to care for, what does that mean for us, her parents and grandparents? I suppose that the saying, "ignorance is bliss," is rather pertinent here. If one doesn't know enough to be afraid, then one ends up treating her just like any other baby--and enjoying her, leaving the harder stuff to God.

Nikolina did find a post-operative home. The NICU (newborn intensive care unit) is not supposed to re-admit babies who have been discharged (germs from the outside world and all that), but since no other unit would take her and the nurses in the NICU have two months of experience in taking care of her, there is where she is. God willing, she will be back home with her parents soon.

Thanks to those who have told me that you are praying for her! She is also back on the prayer list at our Old Mission Church.

Good night to all! I am looking forward to a positive update in the morning.

More from the Land of Splat!

Most of my life I have lived with my family in the Land of Splat! One day we may be able to cross over the border to some other place, but for now, we have developed the survival skills that allow us to be almost comfortable here--and definitely happy.

How can one be happy when popping out from a childhood of physical, sexual, and emotional abuse into an adulthood rife with financial, medical, and career challenges? Easy! One looks for the blessings that are under one's nose. We all have them, no matter how difficult and dark life seems to be at times. Mainly we don't see them because we are covering God's light with our own gloom.

Examples, please? Certainly! I have filled one book (Blest Atheist) with them and am working on a second (Tending God's Sprinklers). Let's take just a couple here.

(1) A friend of mine told me when my daughter-in-law was pregnant with our first grandchild that there is great pleasure in being a grandparent, even more so than in being a parent, and that is because, unlike one's own small children, grandchildren can be sent home. They are not your responsibility, and so you can just have fun with them. That does resonate, but now that I have two grandchildren, I find that the greatest pleasure in being a grandparent lies somewhere else: in watching your own children be good parents (even improving on your parenting). Now the latter (improving) can be quite an achievement when the unthinkable happens, such as your children giving birth to their own handicapped children, as has happened with my son and daughter-in-law, whose son was born with hydronephrosis (eliminated by five surgeries at the University of San Francisco Medical Center) and daughter with a failure-to-close-at-midline defect that involved many of her organs, some aspects of which will be with her all her life. We call these our million-dollar babies because the son's surgery cost more than $1 million and the daughter's to date $3.2 million. Thank God for insurance, for ways in which hospitals and doctors are willing to reduce some costs and take long-term payments on others, and the fact that I earn a good income and can help out. And while we seem to be always scrambling for money to live on, there have been times that money to handle seemingly impossible situations has drifted down onto us like manna from heaven (yep, another possible topic for a post and certainly one covered in Blest Atheist, the book). Those are a few of the blessings: that we can manage these serious problems as a family. The trails through the Land of Splat! may be rocky, but together they are navigable--and God sheds light on our path all the time. Help comes frequently from the most unexpected sources (such as with Maury, the INS overseer who showed up unbidden just when we needed him). I expect that my granchildren, like their aunt and uncle before them, will turn out to be a blessing for other people, too. It has been amazing watching even the most crotchety people turn gentle in their presence, and they have, each according to his/her talents, been able to handle other people in concrete ways, serving as a model for their more physically and mentally capable peers. Good from bad, I think that must be one of God's mottos.

(2) The learning that comes from living in the Land of Splat! is tremendous. The latest proof of learning is my 7-year-old grandson who quizzed a new NICU (newborn intensive care unit) nurse, who was on duty when his sister was discharged after nearly three months at Stanford University Hospital, about an orange light on the monitor of another baby. "Why is the orange light on?" he asked. "The monitor lights tell us when babies need our help," she replied. "No, you don't understand," he answered patiently, "her sp02 level is not low enough to trigger an alarm, so why is the orange light on?" The nurse turned to my son and said, "He's a genius!" "No," answered Shane. "He has just been here too long." Like my grandson, I have learned a lot from being around challenging situations, and I have been able to use that knowledge to save my children's lives at times (yes, really) and to help many other people find the coping mechanisms and medical or educational treatments that they need. Once again, good from bad, the motto that floats around the Land of Splat!

Now, it is your turn. Have you ever spent time in the Land of Splat!? What are your examples?