Santa came early

Since we are traveling over the Christmas holiday to visit family and vacation, Santa came early to our house last nite. It was a late night sending out presents and filling stockings, since we had Andrews holiday work party that evening.

This year, with our travel plans, we elected to not set up our artifical tree or buy one. Instead we bought a very small pine tree plant and placed it on our fireplace mantal. It was sorta fun having an itty bitty tree! Then we placed the presnts all around the fireplace under the mantel. With 10 kids, even buying them only a few presents each, it still looks like we bought out a toy store!

Since the kids were not expecting christmas today, no one was up bright and early. I was thankful for that, considering I hit the bed at 2 am! A few boys were up at 7 and eventually started waking the others up. The excitement was certainly up then! The little kids could barely wait.

Overall everyone seemed happy with their presents. A bit of disapointment for one of the boys as his got somthing he really had wanted. After awhile though, he warmed up to checking out the stuff he did get and really want as well.

I got a favorite christmas cartoon, the grinch who stole Christmas. So we watched that after opening presnts. Also an old fashioned can opener. Cant wait to try out that on our big institutional size cans. The regular ones just dont cut it and stop working right after a short while. Nathaniel spent his hard earned money and bought me a sweet card and a bag of my very favorite mint truffles. It was really really sweet especially since I know hes saving his money to buy a video game system. Katarina also found me a christmas village piece too, very nice.

Its snowing pretty heavy today, supposedly an inch an hour. So we are now enjoying watching the kids play(after all the unpackaging and putting together was done). Its nice day to be snowed in and not have anywhere to go!

I plan on doing some laundry in prep for our trip.

Have a Merry Christmas, May you find the love of Jesus this holiday season
MJ

A discussion

Ive had a discussion with my body and Ive told it that I really dont have the time or energy for chronic pain. Thus far it really hasnt listened. Its days like this I really am reminded that I have a chronic disease that affects my body and how it works.

Its the times when the over the counter medicines are wearing off hours before I can take anymore. When just opening a can with the can opener is making me cringe. Not to mention trying to lift 33 lb Gideon.

Im trying to figure out how really not to complain and give it to God. Its hard cause it hurts and while in the past, it was primarily the wrists, this time its the wrists, finger joints, elbows and knees. So its progessively gotten more involved. Im trying to hang in til friday when I see the rhemotologist. This disease is primarily diagnosed on symptoms and its good for the doctor to see an active flare up. Then Im assuming she will give me a short term course of prednisone. With the past 3 flare ups, thats what it took to stop the joint pain. After IM done nursing, i can go on a preventive med that is supposed to prevent flareups, but we shall see.

I do know though that lack of sleep definitively makes my flare ups worse and increases my risk of seizures too. So I really need to work on making sure Im getting to bed at a decent hour, especially since Elaura wakes me up a couple times a night.


Im praying that I can learn to manage the disease and not be constantly complaining!

God is good ... all the time
MJ

Papa

Papa is my mothers father and my favorite grandfather. Im extremely close to him. I lived with him for the first two or three years of my life, since my mother had me at age 16. Somewhere along the line, I think I wrapped papa around my little finger.

So the story goes that I was the one to nickname him"papa" and my cousin brian nicknamed "granny" and thus they have been granny and papa ever since.

I mostly remember, the times after my mother died, but there may have been weekends spend with them before then too. After my mom died, my grandparents would take my brother and I for a weekend. I really dont remember how often it exactly was, but a lot. I so looked forward to those weekends in which my grandparents infused love into us. I often wonder, as I look back, if they were trying to make up for mom being gone, either way they plain just loved us. They would give us little gifts or somtimes a bigger one even and tell us not to tell the other grandkids. We would take many trips to places around -- a cave in iowa, wisconsin dells, dairy queen and even jelly stone park. Those stick in my mind. They would take us out fishing, pack a lunch and we would stay out til early afternoon. I often would pack a book, that I read while the fish werent biting lol.

I got my love of western french dressing from their house. They would often serve a salad with supper and that was the kind of dressing I put on it. Morel mushrooms and fish fry's bring more sweet memories.

It was my papa though that I learned how to play Euchre from, that I got my love of tomatoes from and the joy of fresh picked veggies from the garden.

My poppy seed(another nickname i created) had open heart surgery this week, quintuple bypass surgery. Hes been having heart trouble for over 5 yrs now and refused the surgery 4 yrs ago. He had two heart attacks this week and it scared him into having the surgery done. Papa came thru okay and is starting on the long road to recovery. I did have the blessing of getting to go and see him for a short while(not nearly long enough) This is the only negative to living where I live (6 hrs away from my papa). And Lord willing, i hope to see him at christmas again.

They have lived in the same house ever since I can remember. So i know its been at least 35 yrs, but they were there long before i was born too, so likely close to 50 yrs. Its a beautiful house with a big yard and I have fond memories of playing in the play house making sand cakes, hiding in the trees and playing iwth my cat fuzzy there. My aunts and uncles are going to try to talk them into selling the house to get a one leval home. I completely understand, with my head at least, the need to do this. Granny is 75 and papa is 78, so with his surgery especially now they need the ease of one leval living. But my heart cannot fathom the change. I know someday I wont have either of them around but somehow I envisioned them in this house til they died. Its hard to picture them anywhere else.

I think how hard it is for me to even think of them moving, I then imagine how incredibly it will be for them. I love them both so much. I hope to talk to them more bout a personal relationship with God rather than just simply attending church.

When I got to see my papa in the hospital, it was only about 24 hrs post surgery, so he was very sleepy. I was content though, to stand there and hold his hand, caressing it and praying as well. It simply was good to be there with him. Hed wake up so often and nod an answer to a question or smile up to me. I even got a few words, he told me "long ways to come". I smiled and said anything for my papa. Even now my heart longs to be near him. I simply cant just abandon my immediate family to stand at his bedside as much as i long to. So I do what i can do from long distance, pray a lot, and make phone calls. Im waiting for the time when he feels up to talking a little on the phone too. For now, I enjoy my talks with granny, whom I love as much as papa.

I try to quiet the cry of my heart with the thought that we are traveling in two and a half weeks to visit for christmas. Even if that side of the family decides not to host christmas, I will get to see papa, either in the hospital or his home or at his short care facility. Its already been decided that granny will not be hosting christmas for obvious reasons. Now its trying to find another suitable location, all with the understanding that no one really knows yet when papa will get out, how long the recovery will be etc.

I miss my papa!

MJ

Tired but thankful

Long day yesterday, the specialist is over an hour from here, so its a loong drive. The appt was good, praising God that the doc took me seriously and that I was able to communicate anything at all while chasing Gideon.

When I brought up sotos syndrome, she indicated had I not, she would have brought it up herself just from looking at him. He has the facial charateristics as well as the overgrowth, so those are two of the big things as well as the severe speech delay and low muscle tone. So we had blood drawn yesterday to start the genetic testing. They will do two tests, one to look at the sequencing to see if anything is out of order and then the second will look to see if any part of it is missing. Then if those two dont find anything, they will do gene testing for the specific gene that can cause sotos syndrome. The first set of tests will take 1 to 3 months to get back, so definitely not a quick result test. I was surprised to find out they only had to draw blood to do the test, I thought it would be more involved somehow.

What is sotos syndrome -- it is a genetic condition that causes overgrowth in the younger years(that normalizes off ) and distintive facial features(large head, widespace eyes, long narrow face with pointed chin), developmental delays(especially in the speech area) and other physical issues such as trouble with coordination. IQ tends to be normal but can range from mild to more severe mental retardation. It can just be some learning disablities in school to not being able to live on your own. From what we see now with Gideon though, he understands far more than he can say, but time will tell on that front. Typically the muscle tone improves, so if he does have this and it improves, he may get to ditch his braces. The developmental delays tend to catch up somewhat.

The doctor was also pleased with how his leg is doing. She really thought it was great and was raving to the students(its a teaching hospital) about how this is what aggressive treatment looks like. It was kinda nice, since Ive only been doing half of his treatment(wearing his compression stocking) and havent really done the massage at all (need to get back to that). I tried to tell her that we havent been doing the massage but she was so pleased with the results regardless that she wasnt listening well.

If this proves to be a correct diagnosis, it lets me off the hook. I have long wondered if inducing him early at 37 weeks caused some of his issues, his developmental delays, etc. If there is a genetic finding, that becomes a non issue.

Well have to get moving, God is good ... all the time

MJ

Lots of things

It seems that I have far more blog topics than I do time. I often think I really should blog bout that and yet it really never occurs. Part of it is time, and part of it is energy.

I have been thinking more about my lupus lately. Mostly I think because of the joint pain and the amount of medicine Im taking. Taking a handful of ibuprofen makes you wonder -- what is this really doing to my body. Yet the ability to function far outweighs my worry of what the pain meds are doing. Somedays its not bad at all and i take nothing and other days I find myself asking the kids to help much more.

Then I start thinking bout fatigue and wonder how exactly are you supposed to tell the difference between being tired from lupus and being tired from being a mom of a newborn and 9 other munchkins, is there a difference? Most of the times when im extremely tired, it corresponds to a direct lack of sleep or other factors, so I tend to put the blame there rather than on the disease. There are days when i feel fabulous and those tend to outweigh the rough stuff and I wonder was the doctor really right and how much of this is all in my head. Then I remember, that the results from the bloodwork cant be all in my head. See I think too much these days.

Tommorrow we see the genecist for Gideon and Im really looking forward to asking her some question about a potential diagnosis for Gideon. So my thoughts are often on that topic and then I have to redirect them to remembering that God is in control. We also have started the process of testing a couple of kids for adhd and other things, so thats on my mind as well. Then everyone seems to commment on how tiny Elaura is, and I start wondering is she really gaining weight. I think im going to take her in for a weight check today since she hasnt gotten up to birth weight yet. So definitely a lot of praying as I think thru this stuff.

On a lighter note, I really want to decorate for christmas but my laundry pile is threatening to not only take over the storage room but the entire house. Soo I really should leave the christmas boxes in the garage and work on the laundry instead.

Also trying to sneak in the last of the medical appts since our deductible is met, so lots of calling and arranging schedules. As well as planning our christmas vacation. Thankfully almost all of our christmas shopping is done. We have one gift yet to pick up for one child(Thank God for online shopping, it was so nice to get most of it done that way) and a few misc relative gifts to finalize but thats it.

Well enough ramblings, God is good ... all the time, even when my mind wanders all over the place!

MJ