Marie's Musings

Musings from the mundane day to day life of a mom of 9 to more serious ponderings of the day.

Friday, January 30, 2009

Its Official

I received the call this week from the genetic counselor with Gideons test results. He indeed does have sotos syndrome with a mutation in his dna. Using the non technical way of understanding it -- his dna is like a sentence. During his development the letters of a word got jumbled up, so there is a misspelling in his dna which causes the sotos syndrome.

What is it exactly, well its an overgrowth syndrome characterized by overgrowth, developmental delays(especially in the speech area) and low muscle tone. Thats the short and sweet version of it. More information can be found at .

Speech should come eventually with therapy and time, but it may be into the elementary school years. We are in the process of teaching Gideon sign language so he has some means of communication. There are behavioral and sleep issues associated with this disorder as well. its not clear what that exactly entails. I can already see a much higher tendency for temper tantrums and an inability to shift gears once upset. The overgrowth part tends to normalize out at some point, roughly around 4 or 5. So it already is a challenge having him much taller and having much longer arms to reach a lot of stuff he shouldnt. There is hope that his muscle tone will improve and that as well should help with speech. And the developmental delays should even out as well. He will always have the facial characteristics of the syndrome, narrow face, pointy chin, and wide spaced eyes.

Long term the prognosis is good but what extent of issues Gideon may or may not have remains to be seen. Most adults with sotos grow up with normal height and normal intellect The challenge will be getting him there! Some have mild learning disabilities or mild mental retardation. Some end up with seizures or scoliosis.

The geneticist has indicated that she thinks he doesnt then have Klippel trenaunay syndrome, rather that the sotos syndrome caused the issues in his leg. That wont ever go away, unless some surgery or something is developed to fix the malformation iwth his vein and transplant lymph nodes. So he will have to continue to wear the compression stocking for the rest of his life. I asked the counselor whether this undiagnosis's the klippel trenaunay and the cerebal palsy. She really didnt give a straight answer only that the sotos syndrome is his primary overlying condition . So we will ask more when we see the geneticist in June.

This didnt surprise me;it really only confirmed what I already suspected pretty highly. It made much sadder than I thought. I expected this to be the case, that he would have sotos -- in fact I was the one who found it and brought it up to his doc in the first place -- but I found some grief in the diagnosis that I didnt expect. I really thought I was prepared for them to say he had it and I guess I wasnt totally there yet. Maybe Im grieving the loss of normal, although I must say nothing of Gideons life thus far has been normal, so Im not sure exactly. I do know this is how i felt after they diagnosed me with lupus. That diagnosis was bantered bout and suspected for 3 yrs, so that wasnt something new either. Yet I felt a distinct sense of sadness then too ...

This is one time I really wish I wasnt right. I searched,googled, talked to docs, and made appt after appt for Gideon trying to find that elusive answer. We got some answers along the way -- none though that seemed to satisfy the question of Gideon. I found those orginal answers , the klippel trenaunay syndrome(KT) and cerebral palsy(CP) only left me with more questions. When I read bout sotos at this point in his life , the lightbulb clicked on and started shouting at me. It was like when doing a puzzle, you search and search for one specific piece only to find it very elusive. And when you find that elusive piece, it just clicks into place -- thats what the diagnosis of sotos syndrome has been like. Suddenly when reading bout this, all his struggles, his birth experience, his medical issues, his delays, everything made sense. I thought why didnt anyone tell me this before, it would have made everything much clearer. It typically isnt diagnosed at birth, usually is at age 2 yrs old or older.

What now? Well not much different really. Already he is recieving services(occupation therapy, speech therapy,and physical therapy) for this developmental delay. We will likely investigate the possiblity of getting him into private speech therapy as well. He will continue to be monitored by his team of docs. His geneticist is already in place from before. God certainely knew what he was doing when he led us to Dr Berry. She is familar with this syndrome and has written papers on the subject as well. Our main thing we will work on will likely be the sign language and the training(teaching him to listen and obey) as we would with any other toddler. It just will be a much longer haul before he gets it.

Already he has developed his own way of comunicating. He gets his point across by bringing you a cup for water and trying to pull you towards the kitchen. Or by trying to show his displeasure by hitting you. He knows how to get his sibling attention too!

We are very blessed to have Gideon, his smile warms up a room!

God is good ... all the time

Wednesday, January 28, 2009

Semi Quiet

Its semi quiet here this morning thanks to a scheduled late start day. I wont need to wake up the kids til 830 should they sleep that long. It appears though that Gideon missed the memo on sleeping in on late start day. Oh well. He was already awake at 430 in the morning and Andrew managed(with lots of kicking and screaming on Gideons part) to get him to go back to sleep til 630. After that we were just out of luck on that front. So i got up and got him some breakfast.

Since Elaura is sleeping, and Gideon is mostly content toddling around, I have some time to blog.

As far as the kids and chores, its always a work in progress. Currently the 6 oldest have assigned room chores(kitchen,living room, family room, the two bathrooms and small areas) plus their bedroom. That involves picking it up, sweeping or vacuuming, changing garbage etc.Bedrooms have to be at least picked up. I dont always check to make sure the bedrooms are clean, so they get a bit of slack there.

I changed up the schedule recently. Previously they ate snack and did homework first, then chores. I found that really wasnt working well for our family especially with the older ones who had a lot more homework. So if their homework took them until supper, the room chores really didnt seem to get done. Im not so diligent in making sure they are finishing up that after supper. By that time in the evening, Im not exactly on top of my game :) And usually then the focus was on them finishing up dinner chores(loading dishwasher, sweeping floor, clearing and washing table, recycling).

So now i have them doing the chores before homework. Its been a bit of a learning curve. Katarina is so fond of doing it this way but it does force her to manage her time better and she doesnt slip under the radar either. Elijah has struggled a bit too in that he doesnt always remember to then do his homework after his chores. Overall i like it better, the house feels less disasterous and I can say yes to free time activities more readily in the evening.

My eldest two know how to do laundry and all of them can help sort and fold. Generally I find it works better if i handle the laundry for the most part and they just have to put away their own clothes. Which on days i do folding(working on trying to make that into an everyday habit) they have a basket of clothes to put away right away when they return from school, even before snack. Again one of those things I learned that it needs to be done right away or they forget about it.

The pet chores are assigned to specific rooms -- the downstrs bathroom has the dog food and water and has dog walking associated with it. The upstairs bathroom has cat litter, so that person is responsible for scooping it.

I have asked Katarina to be responsible for switching whatever load left in the washer at the end of the night(her bedroom is right off the laundry area) and to start a load when she gets up in the morning. If she forgets the morning one, thats not a huge deal, if the washer though is empty when i start, it just seems to help move things along faster. I recently added to Josiahs list, just picking up the bathroom and a quick sweep right before bed to Josiahs list. These two things are secondary and im trying them out to see if it will help make the household run smoother.

I really dont want to add more to the kids list, i think they do a fair share here now. Cleaning has always been a struggle for me and IM constantly trying to work on habits and ways of doing things to make it better. i have learned a little over the years. My stepmom never showed me how to clean or what to do, just usually sent me off to watch the little kids. So i came into the marriage not even really knowing how to mop a floor.

I find if i can keep things more picked up during the day(this is extremely challenging right now with Mr. Gideon pulling everything down right now) then chores in the evening go much smoother. Right now I have a friend who is helping me work on making simple things like loading the dishwasher every morning faithfully into a lifelong habit :) I realize this comes naturally to most people but Im pretty sure I missed getting the cleaning gene.

God is good ... all the time

Monday, January 26, 2009

Monday Madness

Im so far behind on laundry again it isnt funny. I will have to dig my way just to get to the machines. Guess I have todays project already decided for me then.

I really need to clean out and organize my bedroom and the storage room. They are so crammed full of stuff that you cant find anything or get thru very easily. Its definitely an all day project and difficult to complete with a 3 month old infant and 3 busy toddlers/preschoolers! It will most certainely be challenging!

I need to do some scheduling of appts, cancel one, reschedule, schedule another etc. Ive made progress on teh paperwork that needed to be filled out --woohoo -- now onto the next part!\

I did pretty well last weekn on my cleaning goal, i did it monday thru friday --- but failed on teh weekend. Much tougher to make sure it gets done when I have things going on like meetings and church.

God is good all the time


Friday, January 23, 2009

A post for my fans

Since my audience is demanding a new post -- write I shall. I will write bout the littles that i spend my day with. They are such awesome kids :) So are the middles and the bigs :)

Elaura really is at the fun stage -- she is very engaging, loves to smile and coo and is just adorable plus still takes two good long naps. She has just started to get her head up when on her tummy -- still fun to watch her hit her milestones even though shes number 10. Everyone comments on how alert she is. My tag along princess -- she pretty much goes everywhere with me these days.

Gideon is just delightful and terrorful at the same time. His smile just melts my heart. Im not sure if its that I waited 3 really really long months for him to smile or what but i cant help but be cheered up by it. My gigantor(affectionately called of course) though can reach everything. Not only is he super tall, he has extra long arms and big hands which makes him reach even further back on the countertop. Thus the terror -- he pulls so much stuff down its not even funny. Its a really good thing his siblings learned to love him first -- cause he gets into their stuff a lot! He regularly signs please and is in the process of learning more signs. One of the favorite games we play is to growl and he growls back pretending to be a monster. Its pretty hilarious too if he find one of the big boys nerf guns and comes up and says "boom" I think Zechariah taught him that one!

Zemirah is a bit of a drama queen. One of her favorite things to do is to line up her stuff which includes lots of things. Some days she makes a toothbrush into a character, or snags Gideons ironman or just her dollhouse furniture. She is forever worried bout Gideon getting into her stuff so spends a great deal of time protecting it. Unfortunely for her, he has learned a pretty nasty trick -- he figured out if he pulls her hair, he can grab the toy and run. Zemriah has beautiful long blond hair that she doesnt like tied back very often, thus its very accesible! She will follow ezekiel to the ends of the earth it seems. I cant imagine what next year will bring when Ezekiel goes to kidnergarten. They are such best buds. I havent seen this leval of connection since K and J were buddies. The two of them have a very big imagation. They love to play indiana jones or stargate or anything they can make up on the spot. Lots of lava and trouble ensues in these parts.

Ezekiel is very much a typical 5 yr old boy. He is constantly on the go - climbing, hiding, imagining and playing. I often find him in a secret hideout. One day he told me about his secret lab ... yes I made sure the chemicals were put up! He recognizes all his letters and has been trying to figure out sounds. We try to sneak in time when we work on preschool workbook and he loves doing his "homework" I have been trying to do it when the therapists are here for Gideon. That keeps Ezekiel from wanting to play with all their cool toys. He wants to be just like teh big boys cause he will certainely tell you hes not little! His favorite shirt says "my parents are exhausted" :)

This weekend will be finishing up the two pinewood derby cars, possibly going to an ordination ceremony and then the big race on Sunday night! Josiah has to help out at the tournament even though hes not wrestling tommorrow. He was not exactly impressed with this but I encouraged him to have a good attitude. Katarina is off gallivanting with friends tommorrow and at some point I need to go get diapers at walmart.

Thats all for now folks!

Saturday, January 17, 2009

the aftermath

We came back from vacation and started the process of unpacking and putting things away. It was kinda funny, we asked the kids about going to a budget movie that day -- they all indicated wanting to stay home!

Andrew had carpel tunnel surgery the next day. It was a much bigger surgery than either he or I thought. He was recovering most of the week. It went well and Im happy to report he has use of his hand back. It was so great this last weekend to see and hear his joy when he was able to play his guitar without the numbness in his hand. Praise God!

Wednesday was spend cleaning for our new yrs eve party. Several of the kids had a friend over as well as some friends from church and the like. We had a rousing game of apples to apples in which the blue plate of death was passed around. With two tech guys at the table, it was appropriately named . Plus Amy brought some yummy food too to add to our spread. Very enjoyable night!

Then the next day was slated to be our nerf gun war, as tradition states. But Mom had the gall to get sick and I was sick. A nice case of the stomach flu kept me down the majority of the day, I didnt start feeling even slightly better til the evening.

Add the vacation laundry to a week of not getting enough laundry done and well I had a mountain of laundry that takes weeks to recover from. With our large family, minimally i have to do 3 loads of laundry a day IF im caught up, otherwise i need to do 6 to even begin the process of digging out a mountain. Im just at the point now, 2 weeks later that Im beginning to find the hampers and hope that the mountain will stay tamed.

We are now back into the swing of therapy appts, medical appts, girl scouts(cookie time! Anyone want cookies lol), cub scouts and school things.

Josiah got his 4th pin this week -- way to go Josiah! He was very happy to have a break this week. Thursdays meet was canceled since school was canceled due to the cold temps(brrr -50 with windchill). And no practice on friday and no meet on saturday(the varsity team was traveling out of state but not the JV). Wrestling has kept Josiah super busy and he really was relishing a "free" saturday. Perhaps i need to dust off a chore list for him --- lol! The other night he did a quad meet and did not get home until after midnight on a tuesday night. He was really exhausted.

Still waiting to hear on Gideons genetic testing. The first test should be coming back shortly, the 2nd test (done with the same bloodwork) will take 2 more months to complete. Even if both of those tests come back negative, there is a 3rd genetic test that we will do then at that point. We are pretty convinced even without the test that he has sotos though, its just the confirming factor.

Tonite we are looking forward to getting together with some good friends for games! Katarina is going over to babysit their kids, and our littles will be in bed woohoo! Adult fellowship -- yay -- maybe ill even remember to use real words instead of things like potty :)

God is good ... all the time


Monday, January 05, 2009

Catching up

Its been a busy few weeks here, blogging took a back seat.

Since we couldnt vacation this summer(due to andrews job change) we took this years vacation over christmas. This is actually only our 2nd formal vacation in nearly 16 years of marriage. We spent our time in southwestern wisconsin, visiting family over christmas and doing some vacation stuff too. We traveled down a day ahead of any christmas family events, so we had some time to relax too.

Our first hotel was fabulous, not only in price( only 79 a night for winter season) and space but in great staff as well. We rented a 2 leval loft suite with a full kitchen. So it had a kitchen area, eating area, living room area as well as a two bedrooms. With two fold out couches and one roll away cot, we had plenty of room for everyone to sleep and even spread out a bit! We will definitely stay there again. The staff went above and beyond to make sure we were well cared for especially since they did not have staff in the hotel over the actual christmas day. One of the neatest things we did was play hide and seek in the hallways on christmas morning. We were the only guests and there were no staff that day, so we didnt disturb anyone. Not everyone can say that they played hide and seek in a hotel! The kids throughly enjoyed burning off some energy.

We spent some time with family over teh holidays. The only sad note of that was my papa didnt get to come home for christmas , since they are still regulating his meds. I did get to visit with him for a very short time at the nursing home though.

Next we saw bedtime stories on Christmas night. We rarely go to a first run movie, let alone go on opening night, so a neat treat. We even took the kids in their pajamas to the late night show! Excellent flick!~

Packing up from the first hotel to the 2nd was a significant challenge, as many relatives showered the kids with gifts. Good thing my husband is good at playing tetris and packing things well. And Im very thankful to our friends who loaned us their trailer, that definitely was needed! It was very full by the end of the trip!

Although i lived 30 minutes from the attraction most of my life, I had never been(to my recollection anyway) to House on the Rock in spring green wisconsin. It was rather neat to get to see the christmas display, over 6000 santas in the whole viewing areas. One of the neat things was the infinity room which is a really long windowed room that juts out over a rock area with no supports below it. Some of the kids were freaked out but all made the journey to the end and back! I also enjoyed the giant carousel without a horse on it, it was all mythical creatures and the like. What I find most amusing bout this, is they make a big deal with signs and the like stating there are no horses on the carousel at all, yet their logo incoporates a carousel horse in the picture lol.

We then traveled up to wisconsin dells. Im not sure if it was partly that we had such a fabulous hotel the first time or if it was the way we had to have two rooms that were not adjoining but netiher Andrew or I really enjoyed the 2nd hotel. The rooms were directly across the hall from each other but I did not enjoy having the older kids in another room. They on the other hand really enjoyed having much more space and being "away" from mom and dad lol. We had two 2 room suites, so everyone had lots of room. Katarina even enjoyed an entire king sized bed to herself! It was a much bigger hotel and after the smaller hotel we were at before, it just felt really impersonal. It wasnt necessarily bad but we really didnt enjoy the experience there, so I dont think we will go back to that one. The water park there was okay, but really suited for rather younger kids, so the big kids didnt like it much at all.

The next day though, we did a daypass to mount olympus which we enjoyed. The indoor theme park was fun and I enjoyed some rollar coaster rides with the kids, Andrew had fun go karting and bumper carting with the munchkins. There were even teacups for the little ones to ride. We then ventured over to the waterpark part of it and the kids had fun there! It certainely was challenging though making sure we kept track of our multiple age groups. I even got to waterslide on teh tube slides with almost all of the big kids(Katarina had had enough, so she went back to the hotel with the littles) The only bad part to that evening was I thought my wallet was stolen. My memory was faulty thankfully, but I was convinced I had brought it back with me the 2nd time back, and zipped it into my pocket. It turns out though i had left it at the hotel, but we didnt figure that out until we had canceled 2 of the cards and started to make a police report. Whew ... Thank God for bad memory, I really was glad it wasnt stolen. Kinda felt silly though after making a big deal and it turned out I had just forgotten it in the room ...

Packing up and getting on the road took up most of the morning on sunday and we started heading back. A few stops at relatives along the way. We got to see my aunt and uncles brand new house which is absolutely gorgeous with beautiful views of teh countryside! That was an enjoyable visit. I think the kids were glad to be home. In fact the next day when offered teh option of going to a budget movie , most of them declined , saying they just wanted to be home for awhile lol!~

Well thats all for now folks, next up on the blogosphere, the week after vacation :)