Nikolina, Three Years Later: A Picture Story

Since I have related the story of granddaughter Nikolina's struggle to live and her subsequent remarkable development, I thought it might be about time to share pictures, which I have not done since she was in the hospital and first came home. (Shame on me!) The first year photos can be found here: Grandkids. Subsequent photos are below.

Age Two: The pictures in the yellow dress are from her birthday party. Clearly, her little brain is working -- she loves electronic devices and knows how to use them, including how to find, download, and watch her favorite movies on netflix. Of course, her physical condition requires constant monitoring and medical followup. She will probably always have a colostomy, and with almost no short intestine, she needs special milk. Otherwise, she eats and loves food. Her missing body parts (rectum, large intestine, colon) are still missing, but she seems to do well without them. The pieces that were sewn back together seem to be holding although continence looks like it will be an issue. This is not a surprise since her bladder was in three pieces and had to be reconstructed. I don't believe the doctors have been able to locate her spleen yet, but tests show that it is functioning, so it is somewhere within her body. With most of her organs in the wrong places, it is no surprise that the spleen can so easily play hide-and-seek with the doctors. She is not walking yet because of the need for braces and physical therapy. At two, it was considered too early to move forward with that or to make decisions about it, so she has become quite a little crawler. She can pull herself to standing, but her ankles give way quickly. In spite of all those little impediments, her exterior appearance gives nothing less and nothing more than the impression of a very happy and bright little girl, which she is.

Age Three: She now has bright pink braces, ankle-high, and her physical therapist is trying to determine whether or not she will need crutches for walking or will be able ultimately to ambulate, albeit awkwardly, without them. Time will tell. She still spends most of her time crawling, but that little mind of hers is running. Her eyes tell the larger story. As the pictures below, taken at a photo shoot, show, time has been kind to her. Routine follow-ups are, well, routine, thank God. Shane recently posted the pictures below on his facebook page, so I am certain he won't mind my reposting them here.

Health

I have not been very actively blogging lately. Partly this is because I have been very busy, being home no more than three days so far in May (and right now, I am not at home, but in Prague). Partly this is because April was taken up -- well, those few days I was home in April -- with a strange health experience. I woke up on the morning of April 10 earlier than usual, felt a little strange, had some pain in my chest, and decided to take my blood pressure. (For some time, I have had trouble keeping my blood pressure under control.) The blood pressure, it turned out, was 208/116 -- a tad high, to say the least. However, it was an hour when my doctor was still in bed for certain and even the local clinics were closed. We have no nearby hospital, so a trip to the emergency room would take a good half-hour, and I was still a little sleepy to embark upon that journey even though Donnie thought I should. My blood pressure is always the highest when I am the calmest and really shoots up when I am asleep, which I know sounds very strange, but it is also very true. So, I laid back down and pretty readily fell asleep.

After I awoke, I felt somewhat better and took off for work although I still had some chest pain. At work, I mentioned the chest pains in passing to my deputy and admin assistant, who immediately locked my office on me (both have a spare key) and insisted that I go to the emergency room. I disagreed and called my doctor, who was not available, but his nurse gave me advice: go to the emergency room.

So, okay, I agreed to allow my deputy and admin assistant to take me to the emergency room. There, the doctor measured my blood pressure, and it was down: 202/100. In spite of my remonstrance that things were headed in the right direction, the doctor admitted me, treated me for a heart attack, and scheduled me for eons of tests, some of which he could not do because I have a couple of heart irregularities (innocuous -- did not prevent me from serving in the US Army).

Ultimately, I was released with several doctors scratching their heads and saying that they had no idea what had happened to me. The enzyme test showed no heart attack. The blood pressure took a nose dive with nitroglycerin but started returning to its erratic behavior afterward. A comment made by the doctor who released me from the hospital after concluding that there was nothing wrong with my heart, however, was very helpful. He said that the MRI pictures taken showed a thickening of the esophagus and thought I should be taking Prilosac, which I am now doing. He did not know, however, that I have had a hiatal hernia for years, ever since Doah was born some 30-odd years ago. It seems that Doah was the cause of it. In any event, the hernia has slowly grown over time so that it is now rather large. Once I realized that the hernia might have been the problem, it became clear that the chest pains were from the hernia, not from the heart. The complicating factor was the seriously high blood pressure, which is now also under control, thanks to a change in medications. So, I am healthier than anyone thought, it appears, thank God!

And that, along with an impossibly busy travel schedule, is what has kept me quiet for the past while.

"Take Him Home"

I picked up Doah at his group home yesterday evening for the Easter vigil at Old Mission Church here in San Ignatio. It is always a beautiful service with the lighting of the paschal candle from the fire pit by the garden and then the lighting of everyone's candles from the paschal candle. It is an evening of hope and expectation, a movement from dark into light. So much symbolism in one Mass!

Doah looked forward to it because his friend, Bennie, would be there. Bennie is one of my friends who has adopted a mentor/father attitude toward Doah, always ready to talk to him, taking him fishing, and hanging out with him at times. Doah adores Bennie and loves sitting with him at the mission. Doah could hardly wait for the evening to arrive.

So, decked out appropriate, Doah and I arrived promptly at the mission at the starting hour. The church was quite filled, but Doah easily found Bennie and slipped in beside him. Then we all exited for the beginning of the Mass around the fire pit. After our candles were lit, we paraded back inside and listened to the opening music and readings.

As I sat, listening and enjoying this once-a-year-only Mass, Doah slid into the pew beside me. His eyes were watery.

"Mom," he said, "I can't stay. I am allergic to the church."

We had experienced this before. The mission is 200+ years old, and Doah is allergic to mold. There are times that it seems that mold must be getting into the air. At the end of a week that had seen some rain in our normally near-drought, could-easily-become-desert area it was not surprising that perhaps more mold than usual was breaking out into the air.

"Shh," I told Doah. "Wait a few minutes and see if it the problem passes. Don't rub your eyes; just wait and see if they clear up." I did not have much hope that he would get better, but it was worth a little wait, anyway, or so I thought.

No sooner had Doah disappeared toward the front of the church -- I was farther back -- to rejoin Bennie than I heard that Voice I have come to trust and obey say, "Take him home."

When Doah popped up beside me just a few minutes later, still with red, watery eyes, and complained that he was not getting any better, I did as I had been told. I took him home.

Once we were in the outside cooler air, Doah's eyes cleared up. I could have called Donnie to pick us up, but the night was clear, cool (but not cold), and just the right place to spend some time walking together with Doah in the presence of God. (One immediately feels God's presence anywhere in San Ignatio.) And so Doah and I walked all the way home, about a mile or less (never have measured the distance from our home on the hill to the mission in the valley), mostly in silence, mostly in worship, our own little worship service.

How kind is God, I thought! He gave us an alternative way of spending Easter vigil and one in which we were as close to Him as we would have been had we stayed for the entire Mass. Clearly, worship is not about ritual, it is about relationship. And that was made clear in the words, "Take him home." Taking Doah home was not about walking away from God but rather about walking with God. It was a very good Easter vigil yesterday after all.

Rest in Peace, Little Angel

Since Noelle's husband Ray and cat Prince Shadow died within weeks of each other in 2010, Noelle has had a difficult time of it until she adopted two darling orange tabby kittens, male and female (which necessitated a trip to the vet so as not to have a whole family of darling tabby kittens). She called them Angel and Tiger.

Unfortunately, this morning she called to say that Angel, barely a year old, had died. Of what we don't know. I don't even have a picture of Angel, but she looks somewhat like the kitten above. Apparently, Tiger is frantic -- does not understand why his twin is not moving.

Please pray for Noelle. It is hard to go through this kind of loss again so soon. She is taking it in stride, but except for the kittens (and, of course, family -- although not close by), she is pretty much alone.

Cats, at least, for my family, are an essential part of our lives. I realized this quite deeply this weekend. I have been sick in bed -- cannot remember when I have been this sick -- for four days (aftermath of a pertussis vaccination), and my cat Murjan has not left my side!

Feral at Heart

Rescuing feral cats has been a long-time avocation for me. Wherever I go, cats without homes seem to find me.

When I lived on the Arroyo Seco River, I rescued 15-20 cats. The local vet was very helpful in neutering them, and then I returned them to the outdoors. They knew they could always find food outside my door, and if they were cold, they knew how to ask to come in and sleep on the bed. One poor little kitten became trapped in the high branches of a tall tree and could not come down. He cried for four hours before I realized that there was no way he would make it down. So, I got out the ladder, climbed up to the top of it, than scrambled through the branches (thank goodness for all my childhood days climbing the apple trees on our farm) to reach the kitten and bring him down. As soon as he was close enough, he sprang from my grasp onto the ground and scurried away. A few days later, he appeared to be limping. I don't think there was any relationship between the jump to the ground and the limp, but I figured I had better take him into the vet. The neighbor's young daughter helped me corner him (a pretty dangerous thing to do, but the only way to catch him), and 50 bites later and a pure white coat tainted red from my blood, he and I were on the way to the vet. I ended up adopting that particular cat; it took me three months of getting closer and closer to him as he ate before he let me touch him. However, after he moved in with me, he would often push the laptop off my lap, curl up, and sleep.

When I lived in Jordan, I was affectionately known as the Cat Lady of Amman. I rescued more than two dozen cats there. Six of them I took in. The others I found homes for or placed at the no-kill shelter for others to adopt. Most of them were adopted out. One became a shelter favorite and spent her time running around freely with the staff.

One of the Ammani cats, Intrepid, seemed to tame quite easily. We brought him home with us when we returned to California.  A friend who works for the SPCA insists that feral cats are always feral, but when I tell him about the cats I have tamed and how they curl up and sleep beside me and on me, he hesitates to insist that he is right and I am not. This past week, however, I had to admit that perhaps a feral cat hangs on to just a piece of the wildness. Because another feral cat we adopted, Simone, bit the city vet, we cannot take her there any more. Fortunately, not long ago a retired vet moved into San Ignatio, and realizing that we are far from vet help, she has been coming to people's houses to help with their animals. So, she came for an update on cat care at our house. Deciding that it was time to trim nails, she asked me to hold Murjan (a domestic cat), who, like the good little doggy he acts like, held out one paw after another for trimming, purring and snuggling. "Why can't all cats be like Murjan?" the vet asked me after having to sedate Intrepid and Simone.

Intrepid was the problem, though. Drugged and dozing, somewhere near the end of the clipping process, he suddenly realized he was being restrained and his feral instincts leaped to the fore. Ripping through my flesh, he clawed himself out of my arms. I now have one long 6-inch-long scratch that is turning into quite a remarkable scar, many smaller scratches, and two deep gashes that would have required stitches had I gone to the ER. Instead, because it was a Sunday evening, I let the vet patch me up -- she did a pretty good job -- and went to the local medical clinic when it opened in the morning. The doc thought the vet had done well, said it was too late for stitches, and gave me antibiotics.

Oh, the joys of a tamed, er, feral, cat!

Gram

The strangest thing happened last Friday. This Friday flashback post, which I was far from finishing and had stopped writing because the meme is no longer active, showed up on my blog. I took it down since it was just a draft but figured perhaps I should finish it, considering that there had even been a comment made on that nearly empty post. So, here goes:

When Shane (child #3) was born, we were living outside Boston, about 100 miles from my maternal grandmother -- the closest we ever came to living anywhere near her rural New Hampshire neighborhood. Now Gram was a little more than a typical grandmother to me. She was THE family matriarch. Everyone listened to her and did her bidding. I never heard her raise her voice to anyone, yet everyone promptly carried out her every command.

Gram had a kind heart. She would help anyone in need. In fact, during the Great Depression she made sure that many people had food by hiring folks to work on her farm even though she did not really need all the help that she hired. She was never wealthy, but she always had enough. After her farm years, she moved to the city and spent the rest of her life working as a sewer in the textile mills. She was good, and she was fast. So, she made enough money for life's necessities, and she did a good job of saving as well. My grandfather worked there with her.

When my grandfather died at the beginning of my senior year in high school, Gram felt alone. She asked that I, as oldest grandchild, move in with her. I did, and I came to know her as more than a grandmother. She was a mother to me, too. She expected me to do a lot of work, but she never raised her voice to me, and she struck me -- a kind attitude that I had not experienced with my own mother. Perhaps that year alone was what gave me an alternative experience when it came to raising my own children.

I learned many things from Gram, one of the most important being to give without expecting anything in return. One time when I was desperate for tuition money in college, she sent me what I needed and said, "Don't pay it back; pass it on to someone else who needs it." I have done that all  my life, and that is what I do with my children. I help them when they need help if I can, and I ask them only to pass it on to some one else who needs help when and if they can, and they do.

Another thing I learned from Gram was the used of Dentyne gum -- beyond just the breath freshening and teeth whitening. She would send me a package each month I was in college, wrapped inside a letter. Tucked inside the gum wrapper, between the wrapping and the gum, was a flattened $20 bill. That money, worth more in the late 1960s, often meant the difference between eating a meal and going to bed hungry. (I was a full scholarship student but one still had to acquire books, paper, clothes, and food.) Likewise, when Donnie and Shane were hiking the Appalachian Trail, I would send a package of Dentyne gum in the care packages of trail food that I mailed periodically to post offices in towns along the trail. Donnie was a spendthrift, but Shane was thrifty. He also knew the secret of the Dentyne gum. Once alone, he would pull out the $20 bill and when matters were desperate, he would happen to "find" a lost $20 bill on the trail. Donnie never caught on although you would think that he would wonder why Shane was so lucky at finding money so often just when they needed it.

And that takes me back to Shane's birth. He was such a healthy baby, and I was in such good shape from being an Army officer at the time, that the doctor sent both of us home just hours after his birth. Gran was shocked. In her day, women stayed in bed weeks after childbirth and spent most of their energy "dangling" (their legs from the bed to keep the circulation going). She could not understand how I could be home, tending to three small children, including a new baby, less than 24 hours after childbirth. (I was actually fine -- fit as a fiddle, having passed my annual PT test just a few days before Shane was born.) So, Gram moved in with me for a month to help, saying that her job was to do the housework and feeding and my job was to play with the baby. What a blessing! She knew just exactly what I needed to get Shane off to a wonderful start in life and keep the rest of the family happy.

Such was Gram! She, unfortunately, died of a minor illness at the age of 84 when given a transfusion infected with AIDS (before the disease was known to have infected blood supplies). Nonetheless, she outlived her father by two years (he died at 82 from falling down the stairs after the first visit in his life to a dentist -- he felt that dentists were unecessary evils but had been talked into a trip there). I am pleased that all my children did get to know her before she moved on to another level of life.

When a Good Guy Wins

Last year at this time we were deep in negotiations to purchase our current home. HSBC bank had foreclosed more than six months earlier on the previous owner, and based on their behavior with us, we could see why the previous owners lost the house. Not only did the bank not budge an inch on anything, but they used what seemed to us to be deceptive ploys to bring in what would be small amounts of money for the bank but large amounts for us. For example, because we were using a VA loan and the VA almost always requires some repairs prior to approving a loan, the bank asked us to increase our offer by $5K. We did. Then the loan officer inspected and required $2600 in repairs, including removing some molding beneath the deck. The bank's contractor said it would cost $2600 to make the repairs, and the bank told us that before we could close, we would have to pay the bank's contractor to do the repairs. When we pointed out that we neither owned the home nor had any legal documentation that would require the bank to sell the house to us, we would be paying for repairs on someone else's home with no guarantee of having that home become ours. The bank refused to budge and said that if we did not pay, it would rescind its acceptance of our offer and put the house back on the market and keep our escrow.

We contacted a lawyer who said the requirement was likely subterfuge for the bank to wiggle out of an offer that it no longer liked because the market had significantly improved during the time that we had been negotiated and our house had increased in value by $65K. Sure enough, he was right. While we were still discussing the deck and under-deck repairs, the bank re-listed the property without identifying the address or location. However, they picture they used of the driveway had a small white car trucked parked on the street on the google map that they had used to download and post the picture. Donnie called up our house-to-be on google maps, and sure enough there was the little white truck! The lawyer dictated a letter in which we demanded our escrow back if the bank was unwilling to do the repairs.

At that point, Jack, the loan officer for VA, called and asked if we wanted the house if the deck issue could be worked out. When we affirmed, he offered to split the cost of the $2600 between himself and the bank's real estate agent. (Our biggest mistake was to call the real estate agent listed on the for-sale sign; she worked for the bank.) His suggestion took away the danger of losing the house while paying for repairs unless the bank wanted to financially harm its own real estate agent. We agreed, which I am sure put the dishonest real estate agent in a difficult position. The bank wanted the property back, but if she paid the repairs, it would not be able to take it back. Of course, both Jack and she made decent commissions on the house, but in each case it was $1300 less than they would otherwise have earned.

Jack was a gentleman, but the real estate agent took one final swipe at us. The bank's contractor had disassembled the affected part of the deck and removed the mold but had not replace any of the bad wood when the day came for closing. The real estate agent looked at us triumphantly as we looked forlornly at the gaping hole in our deck and said that we had two choices: close "as is" at that moment or wait for the contractor to finish the deck, in which case our offer would be turned down and the house put back on the market and our escrow retained. (Same old story; same old subterfuge.) It was well planned. The closing was on a Sunday, and there was no way to contact our lawyer to see if the bank could get away with that. A handyman friend who planned to paint the house and do other minor repairs had come with us, and he said his brother could finish the deck for $300 and that we should take the house as is because its value was higher than we were paying. So, we did.

We have always been grateful to Jack for coming up with this out-of-the-box solution and for his kindness in paying in our stead. There was no way in which to repay this kindness except with words (and, of course, references). Recently, however, we have been bombarded with all kinds of loan companies wanting to refinance our house for a significantly lower interest rate. Apparently, VA rates have dropped. So, of course, we thought about Jack, sent him copies of the offers, and asked for his advice. He said that most of these really low rates are come-ons with impossible strings attached, with the result being that most people will not qualify for the lowest rate but a higher one. Given that rates are dropping, he did a calculation on what we could realistically do and determined that we could refinance for a somewhat lower rate and save $200 a month. Over thirty years, that would be a significant savings. So, we authorized him to proceed.

In doing a good deed last year, Jack lost $1300. This year, he will probably make ten times that much on the refinancing. Somehow, that tickles me!