Archie turns 2

I doubt I have ever laid eyes on any child as happy as Archie. He think his grandparents (all of them) are his personal play things. I am happy to oblige.I actually look forward to my facetime calls with him but recently his mother wants him to not fuss at her if she moves the camera away from his eyes, or takes the phone for a moment. I mean...how rude. I am not in the business of making him behave so isn't this just a very unrealistic expectation? Yes, I think so. 

We went to a park where there was a working miniature train for all party goers to attend. It was a cool and breezy morning so most of us were bundled up, but none as much as my beautiful Jack, who is the most charming and inquisitive boy I've ever known. He hates the cold almost as much as me, but he is so proud of that missing tooth.

Per usual, Finn wore nearly nothing, and even lost his hat while on the train. We hiked the railway to where it blew off. Finn wants nothing more than big adventures so this hike was perfect. His free spirit inspires me. He not only enjoyed this train themed excuse for a party, he was 100% in character, blowing his train whistle (Chooo-chooo) on cue after I sang, "chugga chugga". He fell on some gravel just before our hike and popped up like a rocket. He never wants to admit he's injured, so when I wrapped his handkerchief around his hand, he was very happy to just move on to our hike, to where we reflected on how the landscape really resembled Lala Land. Oh how happy it makes me that they know Lala Land so well. 

Archie was actually pretty sick for his party, but that didn't stop him from leading his grandfathers to the park, throwing sticks with his Dada, and gobbling up the healthy lunch that Syd always prepares for her children. She's the best mama. The very best. I didn't get much time with the little booger at the party, but I did manage to strip him out of his dirty clothes at the end, and let him honk the horn in my new truck. He loves Lala's truck, and I love him. 

Happy birthday my beautiful boy. Lala loves you the most, my little star sweeper. Papa claim second.

Lala Land journal Feb 19

 I went to Texas Natural Gardener nursery with Sydney and Archie yesterday. Archie started running fever while we were there so the next few days should be interesting. It was all worth it because he found a garden statue of a woman with long flowing hair and said, "Dis Lala" and then went and put his hand on a bald buddha statue and said, "Dis Papa". We both felt so honored. lol He is the cutest little booger and I love every minute I get to spend with him...sick or not. 

 I spent over 200 bucks and managed to plant everything on this glorious fake spring day in February. It's so hard to resist planting this early, but I will cover them if it freezes. I bought and planted: El toro (Muhlenbergia emersleyi) clumping grass, 2 -twisted agave, 4 Gray-woolly twintip (Stemodia Lanata/ground cover), spineless Prickly Pear, and 2 Fall Aster. Felt so good to get some plants in the ground, though I still haven't focused on the back yard despite installing the crushed granite and stone walkway around it. Just feels overwhelming - especially because the cost of plants is astronomical. 

So I continue to focus on my front yard and filled the bird feeders and cleaned the bird bath. I put my merlin ID app on the sound identification and it identified: Savannah sparrow, Carolina Chickadee, Lesser Goldfinch, Bewick's Wren, American Robin, Chipping Sparrow, White-crowned Sparrow, Mourning Dove, American Crow, House Sparrow, House Finch, Northern Cardinal and (for the first time) a Pyrrhuloxia (close relative to the Cardinal). 

Now, I'm gonna load up the dogs and see if I can sink 6 t posts along the roads, where we will mount our road signs the boys will love. True Love lane, Finn's Freeway, Jack's Jungle, Papa's Parkway, and Rocky Road. A full day of Lala Land love. 

The Birds are Back - a Lala Land journal

David is sick this weekend so we couldn't babysit the grand boys as we intended. I'm amazed at how much my heart aches to be around them, however, I am enjoying the stillness this space has provided. I practiced the Ukulele and am learning Let it Be, by the Beatles.

It seems like there should be a song entitled The Birds are Back because the excitement we feel when Spring is approaching is palatable. The Titmouse is a species we are targeting and it appears to be thriving here at Lala Land. We haven't spotted a Bluebird yet, but we are on the look out. 

I set up a triangle of bird feeders (about 20 yards between each), with a bird bath in the center. I put a rock in the middle of the bath so the birds can perch and drink more easily. The starlings and a cardinal just jumped right in and rinsed the cedar pollen off their wings. 

One feeder has a camera in it (feathersnap), and though we really enjoy the pictures, there is just something about the impermanence of birds at a feeder that is so much more intriguing. 

The only time of year you can trim oak trees is after a solid cold snap, so I was just able to go prune our live oak tree in the front pasture. It looks like a tree now, rather than a bush. I'm very happy with the result and was careful not to disturb a blue bird nest I discovered in the higher branches. Joe (corgi) loves it when we go work around the property.

I also started trimming back some of the native grasses I planted in my front yard, since they have already gone to seed. I don't mow anywhere I don't have to - allowing nature to set it's own course here at this bird sanctuary. The quail especially seem to appreciate the undisturbed grassland. 

Tomorrow, I plan to install our road signs my daughter Aubrey made, so our guests and grandsons can map their adventures and discoveries. 

Lastly, I hired someone to come spend two days here, with his chainsaw. Rather than bulldozing juniper trees (less than 10 feet tall), and thereby disturbing the grassland and topsoil, we just cut them off at the ground. We will go back and shred the trees and use that mulch for pathways and to keep the grass down around trees we have planted. 

Spring is always a busy time but we reap the rewards for the rest of the year as we watch the birds migrate in and out. 

Love.

I'm not thinking about love because valentines is approaching, although I did get a valentine in the mail from my friend who makes me one every year.  They're always quite beautiful, and I rather love the sentiment since she makes them herself. 

I am thinking about love because I bathed the dogs today and it is back breaking work. Laska is awful. She moans like a tortured pig the entire time and won't stand still for a brushing. I have dog hair in my mouth and my eyes feel like there is sand in them. There probably is.  

But then, there is Joe. He is like a extra long squirrel sausage. He loves being brushed, bathed, and pampered in any way that involves touching. He even enjoys a blow drying. He listens when I tell him what to do. He is short, so it's still back breaking work. 

They're different. 

You'd think I love Joe more, but I don't. I love them both so much my heart aches. I can't imagine my life without this pair of dogs. Laska was supposed to be my service dog, but she is the most disobedient dog I have ever owned. Lord knows how much money I spent on her training, but she's even an awful car passenger. Service dogs are much use if they can't ride in the car. She tries to attack passing cars and literally NEVER sleeps or stops whining. She is a more attentive passenger than most drivers I have seen. It's exhausting having her along. 

I love her majesty. She is playful and gentle with my grandsons. She plays soccer with my oldest grandson and fetch with the middle. She gets along with every dog she has ever met and rarely wanders far from the house. She is a loyal companion. Despite being able to notice these attributes, I am generally hollering at her and trying to get her to obey. 

Joe never leaves my side. He wants nothing more than to please me. 

They are polar opposites so I love them differently. That doesn't make me a bad pet owner because I don't enjoy them in the same ways. 

It's pretty much the same with my kids.  

Snow Day 2025

Our country is in crisis and I just want my grandchildren to know I did everything I could to deliver them a country to be proud of.

But I can't write about that. They will judge me by my actions. 

Today was a snow day. Will is in Finland on a business trip (flights were all canceled), so Syd was home alone with three wild and crazy boys. Let me just tell you - she is the best mother I have ever seen. I am not biased. I have known thousands of parents, intimately. She is the very best. Will is the perfect complement to her. Truly, perfect.

The best part of the day was when Syd facetimed me to show me the boys playing in the snow. Watching videos of them sliding down the neighbor's driveway made the noise of the country disappear. Neighbors caring for them made me feel so sure they will always be ok.

Then Jack grabbed the phone and showed me the snow and was genuinely interested in seeing the snow here. We had a beautiful conversation and shared our joy for the beauty of nature. Jack gets nature more than most children. He loves all the creatures. He was full of joy and wanted to share it. It was everything. 

Finn seemed to have the best day ever - sliding around like a crazy man. The only thing that would have made it better was sharing it with his Da da. The first thing he told his mother this morning when he ran in to tell her it had snowed, was that he wished his Dada was home so he could see it. That little boy is so special. His emotional intelligence and ability to empathize is greater than some adults I know. 

Archie was so tickled sliding down the driveway on a plastic storage box lid that he could barely contain himself. Then, he spent the rest of the day sliding around on his stomach licking his mittens saying, "yummy". That baby just figured his mother had spread a snow cone across the planet for his own pleasure. She was so tired she didn't think to stop him. Now that's love.  

My heart is fortified tonight. Onward through the fog.

Can you hear me now?

Blue Tooth! Can you hear me now?

David is driving us home.  I’m writing my blog via voice commands over my new blue tooth (see above).  Check it out….NO ONE else has BLUE TOOTH technology like I HAVE!!! Try not to be jealous.

I cannot describe the relief I feel just knowing we are headed in the right direction.  I think this trip held so much hope, that it was really quite terrifying.  I have been gaining so much feeling back in my left leg since the spinal cord stimulator device was removed, it’s simply the headaches and subsequent lethargy that really seems to be my biggest barrier to the lifestyle I long for. 

The headache specialist, Dr. Boes, ordered a PET scan and a cisternogram. The PET scan was to rule out the degenerative brain disorders, and the cisternogram uses such an usual concoction of “contrast” that the nuclear medicine pharmacists actually sent the wrong medicine and we ended up having to stay in Rochestor for an additional day due to the delay (apparently it had to be flown in and was in transit as my procedure began).  They flip-flopped my schedule so I had the PET scan first. Luckily, I had not eaten in some time as that test requires a short fasting period and several limitations in the types of food that cannot be eaten for the 18 hours prior to the exam.  Whew. But the cisternogram was the test I was dreading the most, as it began with a spinal tap, and then they wheeled me up to the nuclear medicine department, where I spent the remainder of yesterday.  On 5 different occasions, I had an hour-long CT scan, while they watched the medicine migrate its way to my brain. The hard part of this, believe it or not, is that odd shaped slab they roll you in and out of the tube on.  I was in such excruciating pain having to lie there, without moving each time, that it really took two people to get me back up.  It was no bueno.  David and I crashed early last night, as we had to come back at 8:00 this morning for the last of the dreaded CT scans.

Of course, throw into the schedule over the past two days, that I had to fit in a trip to the dentist to be fitted for this device that prevents me from clinching my teeth at night.  We did manage to do that and Dr. Klempe (the Dentist) was more than accommodating.  I cannot say enough good things about him and his assistant, Dawn.  Without a doubt, I am sure God brought us to them.  My teeth could have broken at any time, and although I rather resented that it happened while we were already at our stress max, Dr. Klempe approached this entire scenario as an essential piece of the headache puzzle.  I believe he may be right.

I think it’s safe to say that my official diagnosis is “Complicated.”  In truth, Ehlers Danlos is complicated and unfortunately, they just don’t know this disease enough to have established disease process treatments and protocols. 

After the morning CT scan, David and I went for a cup of coffee and were simply waiting for the next appointment with Dr. Klempe at noon, before we met with Dr. Boes (headache specialist) at 1:45.  But my cell phone rang at 9:35 and I always jolt when the area code is 507.  The woman said, “Did you get a phone call telling you that Dr. Drubach (the cognitive specialist who I had an appointment with in September!) has agreed to see you TODAY at 9:45?” I said, no mam, but we can be there in 5 minutes.  Good thing.  We jumped in the car, parked at the hotel, and my sweet David pushed me at warp speed down through the underground walkway to the 8^th floor of the Gonda building! We arrived at 9:43 and even I was panting.  Dr. Drubach did a thorough exam and reviewed all of the previous tests and consultations.  He basically said that although I had significant cognitive deficits with higher order thinking, where problem solving is concerned, there was no evidence of any typical disease process.  Woot! He suggested that my case was complicated (no duh!) and they would simply use the current PET and MRI scans as a baseline for future exams to help establish any possible degenerative brain disease.  Cool beans – mostly good news and now we don’t have to return to Rochestor in September!  It’s really like we won the lottery on that!

In the meantime, we missed the dentist appointment.  David called and thanked him for the help and got the information I need to bring to my dentists in Shreveport.  Then we grabbed a hot dog in the “Peace Plaza” outside the Mayo Clinic and bought ourselves a beautiful pencil drawing of a female cardinal (the video you see below is of a female in a male cardinal mask….I know you thought it was a real cardinal…sorry).  We started getting anxious, so we decided to just go early to my headache appointment since we really, really wanted to see him early and leave for home.

Well, Dr. Boes saw me an hour before my arranged appointment.  Woohoooooo! He said, I know you guys want to get going home, so lets go over what we know.  He said he had another “complicated” patient and had experienced some luck in his treatment, so he felt fairly sure we would come up with a plan. Basically, The cisternogram did not reveal an apparent tear or leak in my dura, but he actually didn’t expect to find one, as Ehlers Danlos Syndrome alone could explain the otherwise, unexplainable symptoms I am experiencing.  He knows the pressure is a problem, especially in finding the right balance between low pressure headaches and high pressure headaches.  He doesn’t think a shunt is worth the risk in my case, and suggested a medication (I can’t remember the name!) that will help address the pain of a headache and tends to reduce spinal fluid pressure just slightly.  He feels confident that this new medication he is recommending and the old reliable (and dreaded because of side-effects), Diamox, would be the best treatment for now.   Lucky for me, he seems to really like my case, and when David told him that I didn’t have a headache last night (first time in months – and coincidentally the night after my pressure was relieved because of the spinal tap), he was totally bought in and seemingly committed to help my physician in Shreveport navigate the prescribed treatments, until we develop a solution I can live with. 

I truly wish I could say they found the problem and they fixed it. That has never been the case when dealing with Ehlers Danlos Syndrome. With all that ambiguity, it’s awfully nice to have some things that are non-negotiables:  My faith, my untiring love for my two beautiful daughters, Sydney and Aubrey, and my ever-growing love for David.  Upon this foundation, I feel capable of loving more, doing more and, yes, doing less. 

We just honked and waved goodbye to Minnesota.  Admittedly, I cried thinking about all that has happened this past week, and how happy I am to leave it behind.  I cannot wait to see Leslie and Charley. Headache or none –I’m done talking about that now.  

Put extra Mayo on mine, please!

There's a lot to say, so I will try to find the shortest way through all of this, but since the last time I posted, I have had the spinal cord stimulator removed, where I recovered from, pretty darn well.  I have been walking every day and have returned to Stand Up Paddling again, which I do most every day. It's sort of comedic to see me, since I generally fall more than I'm up, but I'm getting better each time I give it a go.  David has been joining me on his SUP board and he seems to be enjoying it as well!

On our way to Rochestor, I began experiencing some pretty severe pain in the left side of my jaw. I bought just about everything on the (legal) market to kill the pain or numb my teeth, and thought it would hold me over until my already planned dentist appointment next week.  Not.

We pressed on and I managed to make it to my first appointment here at Mayo on Thursday morning.  The appointment was with the psychiatry/psychology department, where I did over 4 hours of cognitive function tests. I suspected it would reveal some significant memory issues, but really wasn't pleased at the other findings.  Basically, the doctor said my memory was fair (not good, and remembering names is very, very challenging), but that my higher order thinking that involves problem solving was seriously compromised. I also knew this, but didn't quite know how to explain it...which is actually part of the issue: ironically.  In lay terms, I know I need to get from point A to point B, but I get confused when I try and determine the steps it takes to get from A to B.  So, the short of it is, they are doing a PET scan on Tuesday to rule out any degenerative brain disease.

After my morning appointment, David located a dentist who could see me immediately.  Thankfully, it turned out to be a very good dentist, because I apparently clinch my teeth (HARD!) and cracked two teeth badly: one on top and one on bottom. As they drilled the bottom tooth (which felt the worst), they hit a nerve and I learned I could levitate.  Poor David could hear me screaming from the waiting room and was getting pretty anxious to get back there.  Well, they discovered the crack was a zig zag across the entirety of my tooth, so the Dentist had to send me immediately to an oral surgeon, as the only option was to extract my molar.  With a lot of happy gas, local anesthetic, and three hard pulls, my tooth came out - roots and all. Thank God, as otherwise, it would have involved surgery on the bone. I guess having loose connections paid off in that regard.  But, I still had the other tooth to deal with, so I had to return to the dentist, and thankfully, he was able to drill through the middle of the tooth without it breaking apart. He was able to avoid a root canal and simply put a temporary cap on it, that will last me until I get home.  He also fitted me for a device that he thinks will solve my headaches (he's not a humble man), since I clinch my teeth. I had a mouthpiece prior to all of this, but he suggested this was the wrong solution and fit me with one that covers just my front teeth and actually prevents my teeth from ever touching each other.  He called in a favor from his friend at the lab, they did an impression today, and I'll have that device ready to go before we leave here on Tuesday night.  Overall, my teeth are much better but my jaw feels like an 18 wheeler backed over it.  And let me just tell you that brushing and flossing doesn't prevent this, because I'm slightly OCD about that and my teeth had no cavities or issues other than the fact that I was breaking them to pieces while I slept.  How nice.

Oh ya...I failed to mention that our two day stay at Mayo has turned into a week-long stay.  Because they added the PET scan and after today's appointment with the headache specialist on the neurology team, he added a test called a cisternogram.  This doctor was very thorough and seemed to have a lot of good ideas leaving us both feeling like we will either leave here with a definitive diagnosis and solution or at least a plan to address the headaches.  The cisternogram is basically another spinal tap with some special type of contrast that will help them determine if I have a spinal dura leak.  Although they did an MRI a year ago to try as they suspected this same thing then, the doctor today suggested that an MRI is not nearly as conclusive as this test, as it can overlook a small leak.  So, the cisternogram will take place on Monday.  I guess they evaluate the results of this test at 24 hour, 48 hour and 72 hour intervals to see what happens, but the doctor said they would pretty well know what's going on, if anything, by the 48 hour mark.  Therefore, he scheduled me to return to see him late Tuesday afternoon, when he will review the results with me and if all is clear with those results, he will give me a medication regime to follow to try and resolve the headaches.  Of course, if the PET scan reveals some sort of degenerative brain disease, then we might discover the headaches are attributable to that disease process, and in that case, there may or may not be a way to resolve the headaches.

This afternoon, I also met with the original neurologist (Dr. K),  whom I saw last time I was here, and am really confident he knows what he's doing.  I guess he was the fourth person since we've arrived this week who called me "complicated," so I'm pretty sure I'm getting that tattoo'd on my forehead.  Dr. K also ordered an evaluation from the cognitive neurology specialist.  Unfortunately, that Dr can't see me until September, but Dr. K assured me that he is involving the head of the neurology department to urge him to see me before we leave next week.  He wants to get a better understanding of what is going on with my cognitive functioning, and if we are in fact, dealing with a degenerative brain disease, then he wants to know what it is.  He warned me that if that is the case,  there is likely not too much they can do about it.  He said he really didn't think I had Alzheimer's Disease because he felt like it would have shown up on a the previous MRI, but he said there was the possibility that we have just caught whatever disease this is, at its earliest stage and we, therefore, won't be able to determine what it is until we get another MRI in a few months, from which we can compare to previous MRI's.

At the moment, David and I are sufficiently overwhelmed, but terribly grateful for a very nice dentist who has made us swear we will take him out for a beer when we come back in September.  We are also very grateful for food delivery to our room from the local restaurants, rather than hotel room service (which they don't have). I am VERY grateful for noodles since I can only eat soft foods in my desperate attempt to avoid dry sockets.  We are incredibly humbled by the love, care and generosity we have received from all of you.  We feel wrapped up in God's love and know that whatever happens here in the next few days, we will make the best of it.  Our wedding anniversary is Monday, so we will definitely order in a special meal (that's supposed to make you laugh!).

I'm sure there is more...but I'm tired of writing and I'm pretty sure one friend in particular is very tired of reading (you know who you are!! :-) )...oh, and our Greek food was just delivered.  Oh boy...couscous for me...steak kabobs for my sweetie.  Life is good...