Monday, March 28, 2011

"sailed the ocean blue"

I have been thinking a lot about my post yesterday. I do like to write things out. It is like a plow and now I can look at those thoughts differently. I am afraid what I wrote might be taken as being superficial or that I am not happy with my 3 boys. That is not at all the case. I was thinking of it like being an explorer. Having my first child was new territory. It was exciting and there was much to discover. It was like setting out on the ocean. New plants, animals, depths, smells, fears, anxieties, you name it. However, it was so exciting I felt positive for so many reasons, even when I was exhausted! Everything was new.

Having my second child was like coming to shore in Brazil. The shore provided yet again an excitement and wonder. It offered a relationship to the ocean. They play together. They dance together. They wrestle and fight. I am in awe over this relationship. The shore offers a place to build a fire. It offers reprieve from the demands of the ocean. New creatures show their presence here. I am in love with the shore, just as I am with the ocean. I have become a bit more exhausted. I am a bit more desensitized. Therefore, I am not experiencing the same "high" though it's height is equally distanced, and the ocean and shore together are more powerful.

Now along comes my third adventure, my third discovery. I step inside the jungle and find such a vast amount of life I never could imagine existed. This is Calvin. There are things I hear that frighten me. I see poisonous creatures and am not sure what is safe. It presents more fear than I have felt thus far. However, there is excitement and wonder and beauty here. There is an abundance of love for what lies in the jungle. It is flavorful, healthy, peaceful. The ocean, shore, and jungle are meant to be together. They give each other life and I love to be a part of this new land.

When I mention wanting more, how couldn't I when thinking about it this way. Discoveries conditioned me to want more. However, I like it here so maybe I'll stay and settle down.

Sunday, March 27, 2011

Getting "high"

I am fascinated with parenting. I love being a parent. Evan's 5th birthday is on Wednesday and I have been thinking a lot about his birth day (probably because my friend Lisa had her first boy today and my sister Katie is having her first soon as well). Having more babies is literally like a drug to me. How? I am chasing that first "high". Photobucket
I have never done ANY drugs before, but I do know not only are continued repeats of drug use chasing that first high, but also you can never reach it again - unless you add other drugs or something (again, no personal experience to help in that department!). In that case, I wonder to myself if having a girl would make that height attainable. I may never know. I have mixed feelings about having more kids but mostly I'd like to. Then I think about freedom, Joe's desire to continue his education, and on and on, and I'm not sure if it will happen.

Then the guilt sets in. I wonder why Evan, Nolan, and Calvin cannot be enough? I love them with all my heart. I am so happy and thankful to be their mom.
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"Bumbobeeo"
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I am so grateful to nurse Calvin in case he truly is my last. I hold him and thank God for having a baby longer.
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He truly knew what he was doing for me by giving Calvin to me.
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My sister Katie commented that I am reaching my full potential by having Calvin. I never thought about that. I do know I am much more developed as a parent because of him. I can tell you a lot about child development that I never knew before (and he's only 8 months...by the way, "Happy 8 Months Calvin!"). I can tell you a lot about perseverance, desire, pain, joy, anger, sadness, relief, disappointment, elation, confusion, patience, and the list could go on.

So, when I think about not ever again reaching that "high" I had when I gave birth to Evan, I am reminded that Nolan and Calvin bring on new and different and good highs...

I must say, when Nolan was born, he was crying before he was even all the way out. Photobucket
"I go cool!" (Evan keeps going to school without poor Nolan)

My mom, who had 7 babies, got quite a kick out of that [and Grandma Jo Jo was experiencing some physical symptoms herself ;) ]. When he was out I asked the dr "What is it?" And she smiled and said "A baby!". I found out the next day that my dr had just delivered a baby with his/her cord wrapped around his/her neck. That baby did not make it. I am sure "my" delivery had new meaning to her as well (it is a smaller hospital and I doubt she had a baby to deliver in between the two). I was so happy when she said "a boy!" I pictured Evan and his new best friend.

When Calvin was born I had so many worries. When I started going in to labor I was not emotionally ready (though a part of me was definitely excited). That was obvious if you were following this blog at that time. When Calvin was born and I finally saw him I went back to my room with my ultimate delivery low...I was disappointed. I have not shared that here yet. Photobucket
I was disappointed with his thick neck, g-tube up his nose, formula pumping through his body, no nursing, a 5-10 minute walk away from my room, drs and nurses I did not know, and this list goes on and on. I do not ever want a "low" list again. In fact, it is partially what drives my desire to yet again reach for another "high". I wonder if this time it could be that high again because of what I (and many others) went through with Calvin.

I did not intend for this post to go in this direction. I wanted to share about Calvin's therapy, food, and new skill. So, I'll do that quick since I have not been given much chance to get on here. If I'm not back before Wednesday, know I'm sharing cake with my 5 year old "high".
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Calvin turned 8 months on Wednesday. PhotobucketPhotobucket
He started his first solids a week ago. We started with Sweet Potatoes and he is doing really well. When he eats I tell him "open" and he smiles and is starting to open when the spoon comes to his mouth. At this point I feel like he eats as well as Evan did. Nolan was not huge into solids until past his first birthday.
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Calvin's therapy has been going much better. We have an IFSP review on Wednesday and I'm looking into adding Speech to the list. In fact, I'm starting to focus more on Speech than large or fine motor skills because I have confidence those skills will come, but I do not know what Calvin's speech will be like.

The following pictures are from C's last therapy session. His therapist is learning about Reflex Integration. Brain scans are being used to show changes occurring in the brain because of these therapies. I must say that in the 2 weeks we've been using them Calvin has made many improvements. He is bearing weight on his legs much longer, he is sitting longer, he is pushing off and up with his arms, he is now rolling over both ways (left and right) and back to his back, and he over all feels stronger when he is resisting me or moving in my arms. I am very excited about this therapy. I am taking pictures now to make up sheets for Joe to see as well and thought I'd share some here, too.

Trunk Extension:
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Hands Supporting:
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Leg Cross Flexion Extension:
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Just practicing sitting up! Calvin has a harder time with this because of many reasons, including his trunk strength and shorter arms to catch himself. He is improving though and I'd be surprised if he didn't have it down within this next month. I am so pleased with his progress.
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Finally, I wanted to share that I've just recently started saying "so big" to Calvin and lifting his arms. 2 days ago he started lifting his arms himself when I say it. I am very impressed with this! Go Calvin! "So Big!"
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Tuesday, March 22, 2011

Yesterday

Yesterday was World Down Syndrome Day. Celebrated on March 21st to resemble 3 copies of the 21st chromosome.

I have been off the computer lately in order to accomplish the many to-do's around here. One of them is to organize pictures in iPhoto and get back-up discs made. Then I organize the disks into their own books. I love being organized; when I have the time.

Well, as you know, one organizing/cleaning job just leads to another and I found myself in the spare room organizing the boys' "memory boxes". Evan and Nolan have old diaper boxes and Calvin finally (8 months later) has his own paper ream box (or whatever you call it). Calvin's is the largest.

I find myself getting teary eyed thinking about this.

When I first learned Calvin has Down syndrome I thought about photos. I didn't think, or maybe I didn't want, pictures of him taken when he was born. I don't quite understand it completely because that was such a "before". "Now" is so different.

The day I came home from St Paul when Calvin's heart defect was diagnosed and the label of Down syndrome was dropped in my lap I called my friend Amanda. Grandma Jo Jo and Grandpa Wayne had the older boys because A) Joe was in California on a business trip - yes, he was not with me that day and B) my Grandpa Sykora's visitation was that night. So, I felt alone and very worn out and deeply hurt and scared. Amanda works for Birth to Three Early Intervention, so I wanted to let her know. Anyways, to try and make a long story short, I confided in Amanda some of my fears. What was behind those fears was this complete lack of knowledge. I literally thought that my child would not have pictures or picture books because "who will look at them?"

I imagine my boys growing old and having children and someone somewhere down the line picking up the photo-books and looking at "grandpa" or "dad". Calvin will most likely not be a dad, or a grandpa. But that hurts a lot less today. The day before he turns 8 months old.

Other things hurt a lot less as well. I can now have a doctor tell me "people with Down syndrome have ears that do not work the way we would like" and it does not feel like a personal sucker punch. I no longer have to leave quickly to get some privacy so I can cry.

I can now read about Down syndrome and not literally get sick to my stomach and feel like I have emotional whiplash for the next few days. I can look at pictures and not cry about the features my child has that resemble Down syndrome. I can hope for a long life for Calvin where I was once fearful of a too-soon-funeral.

There is much more to World Down Syndrome Day. There is the topic I have not addressed here yet: language. Language when referring to someone with a disability: it is Down syndrome, not Down's syndrome, it is "Calvin has Down syndrome" not "Calvin is a Down syndrome child". "Retarded". We'll talk about all this another time. For now, I want to say that the world has nothing to fear except fear itself. We are so afraid to be hurt, yet the joy Calvin brings surpasses any pain I have ever felt.

Thank you for all your support and all your love. Because of that, the world is a better place.

Tuesday, March 15, 2011

You guys are great!

Thank you! I will keep doing what I am doing. Calvin is moving along and I will not be too concerned about his size and abilities. I really wasn't much but don't want to be blind. His doctor is fine not starting solids even up until he is a year old. However, I'll probably start before that. Also, Calvin is well proportioned. He seems just right to me. And yes, as you can tell, Nolan and Evan are not really large kids and neither are their parents.

Calvin is moving and happy so I don't think I need to worry that he is not eating enough. Also, as far as motor skills, he is making small gains, such as starting to turn a bit more when he's on his stomach. So, that's that. I won't worry unless I have to. Even then, worry is really a waste of energy. Just like I've said before.

On a more positive note: Joe plowed off the garden tonight. He has been so motivated after having a good pumpkin year AND going to Niagara Falls this past weekend. He went for a giant pumpkin convention or something like that ;) Photobucket
He told Evan that since he has the week off, Evan needed to get the snow off the garden. Ev thought his dad was very serious. So, Evan problem solved with 2 options: A) get Grandpa Wayne's snow blower or B) "We could manure spreader with our arms and get snow on Mom!" They had a good laugh over that. At my expense of course. I am so ganged up on being the only girl in this house.

We went for a walk the other day. That is when I got a pic of the eagle. Joe thought it was something I found online. Nope.

When we walk, it takes about an hr to go a mile and we like a goal.Photobucket
So we walk to the farm.Photobucket
The farm is on Joe's family's land. It is rented out by a neighbor.
It is a super small operation with just a few dozen cows. Photobucket
But lucky for us, that is where the calves go when they are no longer with their mommas. However, I think the calves are getting quite big: PhotobucketPhotobucketPhotobucket
The boys enjoyed finding catepillers on the road.PhotobucketNolan wanted to kiss them! I think he actually did kiss a couple. Hopefully they didn't catch his cold!
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Of course the days are incomplete if the boys do not play in the water. Evan was telling me that he likes to put the 'guys' on the shore of "Lake Superior". He likes to jump in the Superior as well.
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Boys!

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Monday, March 14, 2011

Come fly with me

Okay, I have some stuff on mind mind. Wait, don't click out yet...okay, you can if you want. However, if you want to "follow" my blog, or post "comments", I will help since I realize some of you may not know how. AND, I'd love it if you would. That way I know to keep going. Well, that may be the point, I should just be quiet! That's what Joe usually thinks, too. I usually think that too when I wake up in the middle of the night and cannot get back to sleep.

I digress. Okay, to become a follower (of my blog, not Jesus, though that's important too!!) you have to have an account: a google account is the one I'm familiar with, so I'll walk you through that...

Click HERE and fill out the form. It is absolutely harmless and you will not get spam or anything like that. It would be cool if you created a blog that I could follow...hint hint. Really!

Then, after you do that, come back to this page and click on the grey "follow" button on the right-hand column of my blog.

To leave me a comment (of any nature accept hurtful: it does happen and I don't like to be hurt, so that is my only rule) just click on comments at the bottom of the post (in the line that is a different color and after it says "posted by Ilisa Ailts on _____")

I look forward to comments and like to know what you're thinking, too!

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Okay, on to the next thing. I have been thinking A LOT about Calvin (just one of the many things on my mind). Should I be more concerned about him and his size and abilities?

The reason I ask is A) he is almost 8 months old and still in 3-6 clothes and not near filling them out B) he is not doing much large motor wise B) he is still not on solid foods

Wait, that was two B's. I am going to leave it that way because I really don't think I need to be worried. But, I don't want to be blind to anything either.
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Calvin was evaluated by a physical therapist in the beginning of January. He scored fairly well and she decided against starting to work with him. So, the only therapy Calvin gets is Occupational Therapy. I'm honestly not even sure the exact difference between the two, OT and PT....I think it has to do with OT being focused on the overall well-being of Calvin.

Okay. So, Calvin's strengths are his curiosity and his fine-motor skills.

When I walk by things, Calvin is likely to turn and grab at things we're going by. He can grab stuff really quickly and enjoys looking and and playing with things.

He is not doing a whole lot in the large motor department. He rolls over, only one way on his own. He can sit unassisted for a very short pd of time. I think that is it.
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So, my dilema has been about getting him more therapy. I have a referral from my doctor from that whole neck thing at the Down syndrome Clinic (he tilts his head). He does not have any issues though, but I am going to get a second opinion. The problem with OT is just that we have not had luck with his mood when she's here. He is crabby and ready for a nap. So, we're going to switch times starting next week. Other than that, she is really good and we've just been dealing with outside circumstances...
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Thanks for listening, and come fly, I mean, follow me and comment away!

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Sunday, March 13, 2011

Winter's Secrets

Winter holds us in like criminals in a cell. When we're able to finally break out, it is glorious and uplifting. Photobucket Evidence of God awaits us.

Stay tuned for more beauty.

Thanks Joe, for the lens. I love you! Your gift will last a lifetime.

Thursday, March 10, 2011

Enjoying the slow times

I have not done this in years...guess what we're doing?Photobucket

We're laying in bed! I am working on my blog (a complete waste of time). Calvin is sleeping. He is feeling much better.

Cal woke up at midnight and I unbuckled him and brought him straight to bed with me. He was still very warm so the acetametiphine must not have worked. I fell asleep with him uncovered. I used the logic that I was actually colder than him so I'd keep him cool! Yeah right! Well, he/we woke at 4 and was cooled off a bunch and seems to be getting back to himself. We had a bath too and Nolan loved playing with the nasal aspirater. I taught him how to fill it up and squirt it out. During that time I had my eye on a mini trantula that was prancing around on my ceiling.

Nolan spotted it and ran to get his "shooter". I ran and got the vaccuum!

Yes, Nolan found a pacifier again and I'm taking complete advantage of it. He is watching loads of TV (my guilt kicks in again). But, he is finding letters. He has his colors down really well and he can count to 11 and can even find and name some letters.

Yay us! I feel like a waste of space today which is really hard for me. I seriously have some anxiety over it. I'll get over it someday.

My excuse? My back.

Yep, my back was getting better but has been a bugger the past couple of days. I overdid it last week I guess. My chiro wants to/is referring me to a pain specialist. He's giving up on me, too :( I am not happy one bit about this. BUT, I think with rest I can beat it. Rest? With 3 kids?

I told the chiro I don't want to do anything drastic and he is encouraging me to at least have a consult with him and hopefully this doc will also read the MRI to make sure nothing was missed...

So, while I sit her full of anxiety and hopelessness, at least my kids are happy and I have a new "look". Enjoy your Thursday!

Wednesday, March 9, 2011

Poor Sweet Baby Calvin

Sweet Baby Calvin has a cold. He has a hot cold. Like 102.5 degrees. He is currently asleep in his carseat because he fell asleep in it and I'm not touching him.

I am pumping. He has not been eating much and when he woke from (didn't want to wake from) his afternoon nap, I knew it was time.

Our sweet baby was not quite himself so my mom and I stopped by the clinic on our way to get groceries. We were the last ones to see the doc at 6:30pm. We went straight from there to the pharmacy. He is now on an antibiotic (boo).
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The verdict is he has some redness in one ear, definitely congested, and a red throat. The doc asked me if it was alright if he went on an antibiotic. Great doc, but I really wanted him to say what needed to be done. The fact that he didn't told me he didn't know exactly what was causing the fever but we decided that given it has been 5 days since this began and it is only getting worse, then an antibiotic it is.

Having a child whom is ill with cold-like symptoms that progressively worsen leaves parents doing the "should I, no, it's just a virus, but what-if?" game. Well, when we thought about him and how he started coughing last Friday and it has only gotten worse and now has a fever, we made the decision to have it checked out. "Peace of mind if anything" I explained to Joe. Joe is quite concervative. We both are, but him more so.

Well, he will have to get those probiotics in him but we're hoping to get on the otherside of this real quick. We've been lucky/blessed. This is his first true knock-out illness.

He ate yesterday at 3pm and was out by 6pm (not eating much). I woke him at 3am and he didn't each much. I had to pump this morning and I got him to eat but also gave him a bottle during his sleep spell. I don't want him to loose weight.

Calvin cannot afford to loose weight. I have not given the update on the ENT yet (I will)...we went, it was frustrating, and we found out he weighs 12lbs 10oz. Tiny guy. Sweet and tiny.
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So, back to tonight. We went to Subway (since I hadn't eaten and it was 8). He was smiling away at the ceiling fans. I'm going to dust ours off since they are such a hit. I cannot wait for Calvin to be moving and showing us more of his personality. It honestly feels like it will never happen.

Is it possible to have a baby forever??? I'm sure it will happen in this household. Crazy. I'm not sure if I'd like it or not. Okay, not. But for awhile.

Happy Thursday. I hope ours is. Though I'll be cancelling OT and he really never gets therapy. That's another post though. Sorry, I'm doubting anyone has even read it to this point. If so, congrats. Here's a pic to reward you:
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Calling all puzzle lovers!

We love puzzles! Evan can help with 1,000 piece puzzles. He can put together his own 100 piece puzzles. He loves puzzles. He will be 5 in 3 weeks!

Chrissy, Katie, Mom, and I love puzzle time, too!

I love this puzzle:
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Do you remember Cliff? What if I told you he has a family committed to adopting him?! Exciting huh?!! I am very excited and plain old happy. I have a 'thing' for Cliff because the puzzle picture reminds me so much of Calvin. Guess what? This is Cliff more recently:
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Cliff has a new name, too: Joshua. Joshua's family is hosting the following fundraiser: click here for the puzzle fundraiser. The PROBLEM for you, READER, is this fundraiser ends on the 14th, which is Monday. SO, WE HAVE TO ACT FAST! And I mean fast. A recent post describes that his adoption could be brought to a halt in the near future (meaning he has to be saved NOW).

Joshua's mom picked out a 500 piece puzzle and is "selling" the pieces. As each piece is sold for $10, she is able to put the puzzle together. The puzzle will be hung in Joshua's room. Very nice idea. It looks like they have a long ways to go so please consider helping out by purchasing a piece or letting others know about the fundraiser. Both would be even better!

Sunday, March 6, 2011

photo opp

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Look at the green light Nolan...
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Nolan, take your finger out of your nose.
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How do you do this?
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Who cares!
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Time to get Calvin down for his nap.