Wednesday, January 26, 2011

Please Pray

Rachel was one of Dan's students in MD. She is now 26 I believe and married with 3 little children. Ryan is a year old and their youngest. They are being slammed right now and my heart literally aches for them and their baby. It is hard to imagine what they are going through, but please pray for them and little Ryan. Here is where they are now ...

When I asked Michael what I should or shouldn't write about in this update, his response to me was something along the lines of "We don't need to pretend everything is ok because it's not. Life is hard right now."

Some people assume that no news is good news, but unfortunately that is not the case with Ryan. I don't even log his seizures anymore since he has them so often. 2-3 seizures a day is pretty normal. And lately at least one a day has been lasting anywhere from 10-20 minutes. Most of the time they are head dropping seizures that occur in clusters, but the other night he had another grand mal that followed the head dropping which resulted in me using the emergency drug for the first time. I never thought I would have to use it, but I'm glad it worked- almost immediately. It didn't stop the seizure completely until a few minutes after I gave it to him, but it did put him to sleep pretty quickly.

We found out back in December that Ryan is missing part of a Chromosome. If you don't know much about Chromosomes, we have 46 total. 1 from each parent makes 23 pairs. On Ryan's 18th pair, Doctors discovered that part of it was missing or deleted. The 18th Chromosome apparently deals with development, which is why doctors have told us that Ryan may never meet major milestones such as walking or talking (worst case scenario). The neurogenetic specialist told us at the last visit that although Ryan's opthamalogy appt. came back normal, she thinks his vision is like that of a newborn. He can only see certain colors at a certain distance away. She told us that Ryan needs physical therapy (which he now attends twice a week), occupational therapy, and visual therapy. You can imagine how overwhelming this must be as his twice a week therapy already is adding a lot to our schedule. So while I said the appointment went well (discussions and all), it was still very stressful.

Anyway, after we found out about the chromosome the doctors decided to test Ryan for an awful, rare, genetic disease. This Friday (in less than 48 hours)!, we will find out the results of that first genetic test. If it comes back positive, which they are almost 99% it will, then they will explain what it means etc... If it comes back negative (which I am hoping with all my heart it does) then they will tell us the next test that needs to be done.

SO the big question everyone seems to want to know is: how am I (or how are we) doing with all this? Well I told Michael the other day he can start looking for a new wife because I am gonna die an early death from all this stress. I keep being told that I am strong, but I don't feel that way. Seriously, I can be driving along fine on the way to work, and then totally lose it. It has put a lot of strain on our marriage at times, but has also brought us closer together in ways we never thought possible. We have had to lean on God when our Faith has been weak or tested. But overall, I think we are doing ok. Not good, not bad, just ok.

So as I wrap up this last update, I am asking you with all my heart to please pray for our family this Friday. Please pray for NEGATIVE test results. & Please pass the word along to anyone you know who will take a moment to pray for us. Most of you will never have to experience what we are going through right now, but please know that your prayers are helping us get through one day at a time.

As always, thank you from the bottom of our hearts.

Love Rach & Mike

Thursday, January 6, 2011

I Need People

Today is a day where I really need to be interacting with people. Otherwise, I am in a funk. Some call this being an extrovert. I can go with that.

This morning I definitely woke up on the wrong side of the bed. Knowing I needed to make a Redners run for TKA gift cards and go help out in 3rd grade only made me want to crawl back into bed more.

Right when I was walking out the door my dad called. That rarely happens (that he calls I mean) so I had to take it. We had a nice little chat and all of a sudden I was energized. I walked into 3rd grade ready to make more snow globes with the kiddos. Well, today was bring a favorite Christmas toy, preferably an electronic one. Madelyn took her Barbie guitar in. It's electric and plays tunes, namely Girls Just Want to Have Fun by Cindy Lauper. Love that about that guitar.

Right before doing centers with the kids one girl asked if I would play the guitar. I thought it was sweet that she asked, but I said, "Oh honey I can't. We have to do centers now." To which she replied, "Oh. Mrs. Ache said we should ask you if you would play for us since Madelyn said you all played the guitars in Target before Christmas." ha ha! Our secrets are coming out!!

I had to laugh. I said, "OH, well since Mrs. Ache mentioned it maybe I can play a little before I leave." I honestly didn't think this would happen, but I was prepared either way. I mean I don't want to let down all those 3rd graders. Another boy even asked me too before the time was.

Okay. So, next thing I know the kids are lined up with their lunch boxes and the subject comes up again. Never one to pass up a challenge (or dare I say dare) I began rockin' out to Cindy Lauper and a few of the girls started dancing along. ha ha ha!! It was so funny!!!

Let's just all be thankful that Mrs. Ache did not have her camera on her today. Let's also be thankful no parents happen to walk by while I was jammin'. While we are at it, let's be thankful that my husband who was right down the hall trying to be professional and run a school that is all about academic excellence was not aware of my shenanigans.

But, even if I am asked to not come back to volunteer at TKA it was well worth it just seeing the girls dancing and giggling and seeing the kids cracking up. I do love that 3rd grade class. Those kids are so great.

So, now I am back home and have not been able to motivate myself to do ANYTHING. But, I guarantee if I got a phone call from a friend I would be up off my rump straightening up and getting the house all together.

Just as I was writing that sentence Kerry called me :) Yay!! I perked up right away and told her all about my blog post. Of course, then I had to leave to go pick up Madelyn so I didn't have much time left to do anything, but it was fun just the same!

Yay for people!! I need my friends and loved ones in my life so badly. They truly keep me going and keep me motivated in life. I don't know what I would do without them! Oh wait. Yes I do. I would sit on my rump and get nothing done :P Thank you friends!

Wednesday, January 5, 2011

Oy. Dreams.

It's no secret anymore (at least I don't think it is) that I have really really strange dreams on a regular basis. This week has been no different, but they have been especially vivid for some reason, maybe because something has woken me up at some point in the night each day this week.

Anyway, night one I dream about an old friend that I reconnected with. For some reason in my dream she had facial hair purposely. She is a beautiful girl. Seriously, one of the prettiest people I have ever met, but I think I dreamed this because I was watching something recently where the woman mention having all of her hair lasered off. That is a dream of mine. How great to not have to shave or pluck anymore unwanted hairs. If I win the lottery one day, that is the first thing I am going to do. So strange though really. Otherwise, it was nice to reconnect with her.

Oh, but the other thing about that dream is my friend is pregnant with her third child. Well, in my dream her third child was already six months old and she found out she is pregnant again!! I wonder if I am prophetic. Thanks to facebook I should find out in due time (pun intended :).

Okay, day two I dreamed about friends of ours who just moved to the area who were friends of ours when we lived in MD. Sadly, they have had SO much going on since they got here and we have too so we have not been able to get together, except for in my dream of course. We had some kind of birthday party and they came and of course other bizarre things happened, but all in all dreams like that tell me it's time to get in touch with them and plan a time to get together.

Day three was last night. Madelyn's piano teacher is pregnant and about to have her baby a month from now I think. A teacher mentioned getting a baby gift for her yesterday and voila! next thing I know I am dreaming about her having her baby and getting gifts, etc. Until ... uh oh!! I realize I am pregnant as well and due any day!!!! WHAT??!! I started counting up the kids toysrus gift cards because I have NO more baby items. I realize I need a carseat, a bouncy seat (for some reason this was an especially major concern of mine in my dream), a stroller ... I had NOTHING. What does Mary Kay say to me? "I told you as soon as you get rid of your baby stuff you end up pregnant!" ha ha! That part cracks me up. I told her today at the school what she said to me. She said, "Oh that is helpful!" So funny. Ugh, but so stressful.

Thankfully, I woke up from all of these dreams with no crazy bleached facial hair, no pregnant belly, but still in need of making a call to our friends.

I need a nap.

Meltdown Anyone?

Sometimes your kids just need to be snuggled after a rough day.

King's Club was going fine until the last minute. Literally.

We had time inside playing Twister and this fun Dr. Seuss game that I bought the kids for Christmas. But, after school is a tough time to entertain kids and I have found if they have time to run around everyone is just a little better off.

So, we spent time outside. It was a small group today which is lovely, but it is also the first week back after vacation, wed of that week, after school hours when kids are hungry ... you get the idea. Well, combine all those things along with a wide age range of the kids and disaster is bound to happen apparently. Just when I was ready to mark the hour off as a success all you know what broke loose. Kids started trying to mess with the younger kids by taking their toys they were playing with so you have a meltdown, very guilty looking older kids who then end up fussing at each other, reluctant apologies and it's time to go in so one of the littlest ones (mine) start crying because he doesn't want the play time to end. Oh my.

What a great way to end an otherwise good day.

In all honesty I am beat too. Before I had to leave to get Madelyn from school I really just wanted to snuggle up and take a nap. Alas, responsibilities ruin that plan.

So, again tonight I have great plans of snuggling into bed early and reading my book until I fall asleep, but do you know what will really happen? This ...

Dan will get home later than expected. The kids will go to bed later than expected, and they need showers. Dan will then say we have to check in with the wii fit since neither of us has done it today. Admittedly, I have started to look forward to that time of day because it is really funny. I'll post on that later though. Then we will head to the basement where our tv is and it will be an hour before we come back up.

In the meantime, I will hang onto the fantasy in my head of lying in bed at an early hour reading Bonhoeffer (such a great book by the way).

Monday, January 3, 2011


what a great christmas break this has been. we have had so much fun. we had a great christmas. we got a little snow. we played a lot with the kids. we got to see friends. we got to relax. we got to see friends again. we just had the perfect mix of fun and relaxation.

and now they are all back to school. (sigh) usually i am ready for routine again, but not this year. i want them home with me.

alas, i will sip my coffee and pour my heart out in my blog ...

we kept the 3rd grade class pets all week. three guinea pigs. they were funny. quite verbal. and i will admit ... it was hard to send them back. the table we had them sitting on in the basement is so bare now. we took them back last night since dan was going to turn the heat on at the school anyway. and i thought it would be best for the kids to come back and have them there right away so nothing was unusual about the room. i had to remind myself that they are by themselves every night at the school. i know. i have issues. this is why dan limited me to my four animals. i haven't asked for one, but he already told me we are not getting a guinea pig.

my poor kids though. we had a great relaxing week that i already mentioned and then new year's eve struck. madelyn was up until 1:30 with the rest of us and elijah was up way too late for his little body that normally turns off at 9 pm whether he is in bed or not. they did not recover. so, this morning i felt like i was sending them back to school as exhausted as they were when vacation started, and they are all paled with dark circles under their eyes. this morning and yesterday morning we had to wake both of them up for church and then school today. elijah is usually up with the sun. he kept telling me how he shouldn't go to school because he was so sleepy he was going to fall asleep in his class. poor little guy. madelyn was excited enough to see her friends that she was motivated enough to get moving.

madelyn got a leapster for christmas that you can buy a camera attachment for. she LOVES it. she told me last night that she was going to take a picture of all of her classmates so that if anyone leaves next year she will have a picture to remember them. so sweet.

we went to IHOP last night for dinner because it was our last day of vacation. halfway through dinner madelyn asked if we could go to dunkin donuts for dessert. ha ha! this just cracks me up. we told her no because we were eating dessert for dinner, you know "dinsert" or "disnert" however you prefer to say it :) i just crack myself up.

we spent new year's with jess and jon like we normally do. it was fun. jess and i danced to just dance 2 for the wii. so funny. you can dance duets where you are both doing some similar and some different moves. some moves you faced each other and i could not look at jess without laughing. it is so funny when you are trying to do the moves and stay focused, but then you look at your friend trying to do the same thing and it is just so funny. of course dan and jon did not participate, but felt free to coach us as we went along. typical right?

preston and elijah were buddies this year too now that preston is almost 4. they were really cute together playing super heroes and what not. the girls were typical girls playing barbies and taking pictures and yelling at the boys to stay away. the boys were sad, but we told them ultimately this was a good thing since they probably didn't want to play with barbies anyway. older sisters can be brutal though.

we got to see the warrens so much that now they are back at state college it is really sad all over again. thankfully they still come back to this area enough where we can see them regularly. it's just so nice when you have friends that are great last minute peeps who can get together on a whim and you don't have to clean your house for them.

i can't not mention target again. i got a load of wrapping paper for next christmas there last night. huge rolls for 60 cents and packs of multiple rolls for $1.25. sadly, they were out of boxes and bags. sadly, i need both boxes and bags for next year. i may head to the other target soon to check out their stash. i really did not think i would be back in target so soon, but who am i kidding? i love that place. also, i would like to dedicate this paragraph to Kristine Eberly who shares my love (obsession?) for target :)

elijah is stuck on this age thing. yesterday he was telling dan that he couldn't believe he was so old and still alive. what?? dan just went along with it. a woman at our church just turned 96 and you would NEVER guess she was that old. elijah couldn't believe she was still alive either and thinks that maybe she will end up the oldest person ever. so funny how their little minds work.

well, this should be all for now since i haven't worked out yet today and i was hoping to do it first thing. we are having fun with out wii fit. my plan for this morning is to do some running on it, but ugh. who wants to run when you can just sit on your rump and sip coffee? i know. i know. i need to if i am going to ever fit back into my clothes properly without this belly hanging over the edges of my pants. oy. just keep reminding me of that when i post about the fact that i am still sitting on my rump.