Thursday, September 30, 2010

Super Sun

I mentioned something about not liking waking up in the middle of the night as part of having a newborn, and there is something else that is hard on me as well: not getting outside as much. I love being outside! I don't know if I always have, but I have many memories of playing Hide and Seek, TV Tag, House, riding bike, etc. (a perfect advantage of having 6 close siblings). Being outside is energizing and healthy.

Having a newborn makes it difficult to get out because if I'm not feeding him, pumping, washing dishes, or one of the other million things that need to get done, THEN we can get outside (I know, I need to prioritize). I try to get the kids out as much as possible. And, there is no excuse good enough this week, when these are the final days of September and it's sunny and in the 70's! Awesome!

We got out plenty yesterday and I sought out the color that is remaining. Evan picked "gorges" or better known as gourds, for roughly 3 hours. He loves doing that and we have a whole wheel barrel full of them that will probably become compost if people do not start taking them! Either way, they have served a purposeful function. Well, I'm almost done pumping and we're heading out to meet the sun! Here are some pictures from the past few days:

There is a magnetic force that pulls Nolan to Calvin, making it extremely difficult to leave Calvin's side during the daytime!

Even the moon cannot resist being a part of these beautiful days!

Habanero anyone? We have a few more than we'll every use!

Wednesday, September 29, 2010

Will and Belief

I have not posted about Calvin's therapies in a while and will do some of that here.

Calvin goes to the chiropractor weekly (as do I and the other 2 boys; Joe does not go as often, but probably should). On the wall hangs a quote which reminded me that possibilities lie in the will to try and the belief they can happen. This struck a cord with me as I had on my mind the constant desire to nurse Calvin. Behind nursing him lies his ability to a) choose to do so and b) physically be able to do so. What I mean is what lies in his mouth and throat. As you may remember, Calvin aspirates, or breaths in his food. Therefore, we have spent a great deal of energy (emotions) formulating a recipe in order for him to drink breast milk. He came home from the NICU on thickened formula. When he was a month old, we consulted with a nutritionist, Karen Hurd, and she recommended psyllium. Psyllium worked okay and Calvin ate it. However, we were not sure about all the bowel movements that occurred and sought another alternative. We then decreased the psyllium and added Guar Gum. This allowed us to use less additives. We have recently been trying to decrease the additives and allow Calvin to "learn" to eat thinner liquids. It is working all right, but I'd much rather have him on purely breast milk now (I am trying to be patient).

"So, how do we get there?" I ask. I am relying on maturation of Calvin's system as well as help from Dr. Laughlin of Health Centered Dentistry. Dr. Laughlin has taught me to perform the Internal Pterygoid Release, described in the newsletter on the website. We have been doing that with Calvin at least twice a day for a month. His feedings have increased in both volume and strength but there is room to improve, yet. Dr. Laughlin also improved a pacifier for Calvin and we really push him to use it. He does pretty well with it and I believe I see a positive correlation between the time he spends sucking on it and his strength with the bottle. Plus, Cal has latched better for nursing on the days he has gone in to see Dr.

I brought Calvin in yesterday morning and he had impressions of his jaw made. Dr. Laughlin is going to consult with Dr. Farrand Robson of Tacoma, Washington. This website will introduce you (as it did me) to Oral Systemic Balance, a technique developed by Dr. Robson. Please take some time perusing that sight - it may be of interest to you and your own health! There is also a "swallow study" video where you can see what Calvin's looked like. It also describes what aspirating is and why some people are more vulnerable to it.

Needless to say, I am very hopeful and excited about working with Dr. Laughlin and Dr. Robson. It is no coincidence that I ended up at Health Centered Dentistry roughly 2 years ago. God knew what He was doing!

Calvin also receives weekly Occupational Therapy. We work on keeping Calvin "mid-line". This is when his head and body line up and his arms and legs are tucked in - we call it fetal position (my favorite way to sleep). This encourages Calvin to come back to the middle and will help him as he physically develops. We are to do usual "things" with Calvin, like have him track people or toys with his eyes, move him around and help him come back to "mid-line", put toys in his hands, interact with him, etc. These are all pretty typical things at this point. The OT also taught me that low muscle tone (common for people with Ds and some other genetic disorders) is not muscle strength, but rather a harder time starting the movement. I'm guessing it has to do with the messages between the brain and muscles. Bouncing helps with this and we will do more of that as he gets older (he will do it himself when he gets older). So, if you see people bouncing and they have a disorder, like Ds, this may be their way of getting going, so to speak.

Up next will be to continue with what we are doing and possibly see Steve Tonsager in River Falls. I'll tell you more about that another time!

Sunday, September 26, 2010

Step Up For Down Syndrome

I used to work for Head Start, from 2003 to 2006 (when I had Evan). I was lucky, well, blessed is more like it, to work with Amanda. Despite job changes and 30 miles between us, Amanda and I have remained close friends. She works for Birth to Three and serves a family who have a toddler with Down syndrome. She has shared our story with this family and they have been very willing to help us out in any way we may need (a common symptom of Ds). They told Amanda about a walk they were participating in today: Step Up For Down Syndrome. October is National Down Syndrome Awareness Month and groups across the nation host many 'walk' events, similar to Relay for Life, to kick off the month. Money is raised, teams participate; teams of families and friends and people with Ds. As I learn more, I'll teach you...

What I have written so far may seem dry, lack luster, emotionless. But it's not. Although I'm good at hiding it, it was very emotional for me to join Amanda, and thousands of others including Calvin's aunt Doop and grandma Jo Jo, on a walk through Como Park. It was my first real feeling of camaraderie. We are a team, though we may not spend much actual time together. Us 4, along with 2 little ones, enjoyed scoping out the event and plan to coordinate a team for 2011. We're thinking "Cal's Crew starring Captain Calvin" or something like that. We have a lot of time to think about it.

The part that got me emotional, and does as I think about it, is that thousands of people gather and we all "get it". I saw people smiling and having fun and enjoying the star of their team! We will be all right, we really will!

Amanda's sweet baby girl. She was so happy to support her buddy Calvin!

People liked the bear suit. The boys' aunt Patty gave that to Nolan when he was born. I love using the clothes again since it was so hard each time I had to pack them up.
Grandma Jo Jo... Amanda and I in the background
With Aunt Doopie...
Another face I love!

Notice his left arm up and the right extended out as he looks to his right? That is a good thing that he and all babies are supposed to do. However, I forget what it is called - three letters, maybe Amanda can comment on it?
No, I'm not neglecting that white tongue. We're not convinced it's thrush (neither is the dr), since he has thick white food for his meals. I just love this pic!

Saturday, September 25, 2010

Wednesday, September 22, 2010

Wild Wednesday

It has been very busy around here, though I'm sure it has been in most households. Something about Fall brings on a hustle and bustle. Maybe it is the cloudy days, the colors turning their way from green to brown, the cool weather, or the shortened daylight. No matter the reason, I feel winter trying to make its way in and hold me down. When I was a kid, nothing slowed me down much, which is why I love having kids around. They make me appreciate things so much more (especially down time! ha, ha!).

I find myself daydreaming about what it will be like with 3 boys in the fall time. Will they hunt with their dad and uncles? Will I be left to my sisters and mothers to focus on my own activities? Who knows, but it is fun to dream about.

There are stepping stones to the future, and the one on my mind and in my days, is Calvin's surgery. We saw the cardiologist today. Calvin weighs 9 lbs 1.5 oz, which is awesome. The other good news is that Dr. Sutton decreased Cal's Lasix (diuretic) by a third, getting rid of the mid-day dose. Also, he mentioned the need for the sodium is questionable. So, that will adjust accordingly.

Calvin is up to about 20 ounces of food a day, which is also awesome. He gave me a bit of a scare yesterday. He was up 3 times on Monday night and I could tell something was not right. This is not how Cal is. He was crying and crying. I brought him in, thinking maybe he had an ear infection. Nothing. He sounded clear and his ears looked good. That is great news! On the way to the clinic I was imagining having the Down syndrome illnesses creeping in. I was afraid that if he already had an ear infection after one possible cold, then we'd probably have a lot. So, that is all good news in this household.

The current plan for Calvin and his heart are that he will see Dr. Sutton next month, the end of October, and if things are still good (as I assume they will be), he will be pushed off again for another month. At that point I think we'll be discussing a plan as to when the surgery will be. I imagine it will be in December or January since he's doing so well. I'll be pushing for as soon as possible so we can get him off the meds, because of how it impacts development, and also to get working harder on the goal of nursing. I know that it will not make everything magically happen, but it is my hope that it will help!

Here are some pictures from the past month:

The boys on the tractors at the MN State Fair (of course a huge hit for them)
Riding the tractor out to harvest pumpkins with Grandpa and Dad
Nolan and those glasses!
Cinderella pumpkin

Prepping the soil for next year already...
Harvesting the Atlantic Giants with Evan and Nolan waiting in the truck (the best place for Nolan sometimes!)
Ready for an outing on a brisk Fall day
My 3 sons
Those eyes!

Sunday, September 19, 2010

Run around

I've been writing this post in my head for 8 weeks now. I knew I'd have to reflect and share my inner thoughts and feelings about something I spend a good amount of time doing; running. I ran through 3 pregnancies, against challenging weather, over tough courses, with colds, in spectacular places, and amongst wonderful people. I would have never thought I'd accomplish such things. See, I grew up with asthma. It plain old hurt to exercise. I'd need an inhaler with me and it was just not the same feeling once it kicked in. I did the required runs in school. I thought those were such a huge deal and I dreaded it. It wasn't until later high school and college that I started exercising and using running to do so.

My memories of beginning to run were with my cousin Cami. We ran to train for high school volleyball. She and I had many times of running together. Often we would get up at 5 and run a mile or 2. I admit, it was miserable. I was always so tired. But, once I got up and going, I'd feel great! Plus, it was easier to have a partner to suffer with me! I have had many partners to run with. The main one is my husband.

Joe encouraged me to run, and run in the morning, back during my freshman year of college in River Falls. He'd tell me that running in the morning was better because you were using up your stored energy, not the food you ate just hours before. That has helped me find my favorite time of day to run, the morning! Well, I'm getting off track and would need a book to write all my running thoughts and memories.

I ran many miles in River Falls. My favorites were with Cami, Joe, Mandy, and Lisa. In the evenings after coming home from our summer jobs, Joe and I would run to a destined spot (a park or playing field) with a frisbee in hand. He would encourage me to be the runner I am today.

Mandy and Lisa were great running partners (and rollerblade partners as well - I'll never forget that first time Lisa! "I don't know how to use my breaks!"). Both better than I, though they'd never admit it! Most of my partners are better than me but I guess that gives me something to keep up with (like this morning with AJ). I also ran some miles with my high school friend, Krissy. This brings me to thoughts of where I've ran.

I ran in Madison with Krissy, New Jersey with Lisa, and in some 5K's with Mandy. I've ran along oceans, rivers, lakes, and mountains. Sounds spectacular, now that I've finally taken time to reflect upon this.

I've ran in Cancun and Cabos, Mexico; San Diego and San Clemente, CA; Newark, NJ; Yellowstone and Glacier National Park; Red Lodge, MT; Columbia, Maryland; and various places around home. There are more places and people than I have time, space, or energy to mention. That does not mean they were not important though (like the marathon - training with Jen, the bear, running clubs, etc).

They are all memorable. Some of my regular weekly runs have been the when I first ran after finding out I was pregnant with Evan.

I took the pregnancy test right before I was going out for a run. I still ran, but with butterflies in my stomach! I ran until 2 days before I had him. I ran the day before I had Nolan, and the day I had Calvin. Each child was easier to run with. I think it was because I knew I could do it. I loved sharing that time with the boys and was/am hopeful it helps with the quality of their lives.

It has helped me in my life. I am more confident and fulfilled, not to mention healthier. I could not believe how much running has provided me as I began to think about the various runs I've had (and I don't mean those kind of runs!) I will have to stop this post because it is getting long, but maybe I'll be coming back to this topic. Okay, you can count on it.

I said I'd find some pictures, but there are not many. I wish I had a picture from all those places and with all the people I have run with.

This one is from my first and only OVERALL 1st place winner - in the Woodville, WI 5K. The year was 2007. I was the first female in. I was in so much pain. Joe was running the half-marathon as part of training for his first marathon. My time was about 23:03 or something close. What is kind of neat is this run is the home of my first 5K I ever completed (in 2003, I think).
The next few pictures are of my first and only marathon, Grandma's in Duluth, MN. It was hot and sunny. I was nursing Nolan as he was only 4 months old when I signed up and 10 months when I competed in it. My goal was to have 10 minute miles or a 4:20 time. I came in at 3:57:30 (or so on the seconds). This made my average mile about 9:04 minute miles. I like the difference between this first picture and the last. The last truly reflects how I felt and when I saw it, I laughed and laughed and wanted to frame it. Katie and I got quite the kick out of these.

Unfortunately, I did not have space to include much on Joe's running. He has been at it a long time. I think he'd agree that this picture is one of his favorites because he got first place while pushing Evan in the cart. The guy behind him was probably pretty disappointed that an 'old' dad beat him while pushing a load. This was in the 2008 Amery Fall Festival 5K run. I was at home with baby Nolan. I remember Joe saying he did not expect a good run because he was up helping me with Nolan (he was only a couple of weeks old). Well, I think Joe should do that more often!
The final picture for this post is of the New Richmond 5K while I was 35 weeks pregnant with Calvin. According to the running club newsletter, I won the 8 month pregnancy category!

Wednesday, September 15, 2010

It's what I'm made of

I did it, I cursed God. I am not proud of it. In fact, I prayed for forgiveness right away! I sometimes wonder how much He thinks I can handle. Of course I know the answer is not about my handling it, but handing it over to Him. This is a struggle for me though. I wonder, "How can he fold laundry, wash the dishes, rock the kids (more than one at a time), and so on, AND still provide me with a break??" But, here I am, the house is quiet, the laundry is folded, dishes washed, and I'm getting my break. It's nothing short of a blessing. I know this because it does not happen often. Not often enough.

I fell asleep while pumping last night. Joe and I sat down, with Calvin, to attempt to finish Mr. Magorium's Wonder Emporium. I said "attempt", did you catch that? I think we clocked in about 50 minutes and I could not do it any longer. This was the 3rd try. Sad isn't it? Well, I came upstairs to pump before bed (it was only 8:45, also sad), I blinked, and was suddenly very confused. I didn't know which way was up, let alone what in the world was going on. I thought it was the middle of the night, but wait, it was only 9:45! Yuck. The only good news was the baby was already fed, so I could get up, brush my teeth, and get to bed. The bad news was I still had to get up in the middle of the night!

This middle of the night stuff is one thing I loath about parenting. I just don't like it. I was super lazy with Nolan and nursed him in bed, where he stayed all night because I just couldn't get up. Of course it was better with Evan because I did things "by the book" with him. The thing about that is, Evan is pretty much a "by the book" kind of kid and Nolan, well, not so much. My 1:00 am feeding two nights ago included a visit from Nolan. He can get out of his crib. (I have lost nearly all control) He was up with me the whole time I pumped and fed Calvin cuz darn it, I did not want to spend more time going up and down stairs, listening to crying, and him waking his brother. I made the decision to let him be and brought him to bed with me when I was done. It took awhile for us to settle down and then, at 2:41 am, along comes Evan. Evan still wears diapers at night. He leaked and needed new PJ's. This was another time I could have cursed God. "Patience, patience". This is my newest prayer: "Please God, replace my anger with patience". Deep breaths help, too. Well, it was a long night with short sleep.

Parenting is a huge part of my life right now. I have been doing a lot of thinking about what else defines me. There are things. Running and exercise are big ones. Being a wife is another. These are two things I cannot give up on. I cannot set them aside and expect them to pop up healthy in 3, 5, 10 years from now. I must continue with both along with parenting. It is not easy. Here's an example. I run quite a bit. I try 4 times a week with at least one 4 or more miles. The others are only 2 right now. I got on the treadmill yesterday morning and Nolan was not having it. He wanted to be on it (I have a gate around it) and he cried just about the whole 20 minutes. I stopped roughly 6 times in there and finally thought "forget it". I could not make him happy unless I was done, so I was going to get it done with then! I refused to stop. I have to do things for myself. It was miserable. It is hard to listen to children cry. When I was done, guess what, he stopped crying! I made the right decision. I did an ab workout. Yes Lisa, Hit the Spot Abs, and Nolan was literally under my legs. "Fine, I can do this with him there". I decided that I will follow up with a post of pictures I can fine of myself or Joe running. I have some fun ones that I am proud of. They are not to brag. In fact, I think they'll just make you laugh. That's for next time. I'm going to talk more about the other things that make me who I am.

Friday, September 10, 2010

Picture this

Joe's working on his Halloween/pumpkin display. We finally have pumpkins! Big and small, we got 'em all! I'm not too sure I think these first 2 pics are great. I'll work on it and deliver something more interesting...

4 Giants resting, all snug in their beds while visions of carvers dance in their heads.

Nolan had a fever this week and he did not want to go outside to harvest corn to freeze. However, he felt better the next afternoon and had lots of time outside riding the blue tractor (what the boys call the New Holland).

"Quick Nolan, put those glasses back!" (Joe's new running glasses)

Awwww, so sweet:

Yep, he's starting to smile!! Yay! It must be using up some energy because he's also increased his feeds to 17 or more oz a day!! We are now mixing up 3 oz bottles thickened with Guar Gum and a bit of psyllium. That's it! He's also latching some with the shield. Maybe we'll get there afterall.

Our Little Pumpkin :)