Tuesday, December 29, 2009

Dada

Tonight, as I was getting ready to prepare dinner, I overheard Dave say to Dylan, "Aw D-dude! I never knew that I was going to love you this much.".

I pretended not to hear, but I heard it. It made my eyes teary, too (although I blamed it on the shallots).

It seems as though Dave is feeling the recent changes as well. The peace. The happiness. This sense of meaning and love. Yes, life is coming together. For Dylan. For Cassidy. For me and for Dave.

Dave also said to Dylan, "It's like we were thrown a curve ball. But, I'm so glad!".

See, this week Dylan has learned to say "Dada". He knows who "Dada" is and will say it with much enthusiasm! I had made Dylan a photo book for Christmas and it's been quite a hit! It contains pictures of me, Dave, Cassidy, our dogs, his favorite toys, his milk, his crib, bath etc. Dylan absolutely loves it and since we've begun looking through it, he has learned to say "Dada", will say "Mama" on my page, point to Cass on hers, sign "bath", "eat", "dog", and most recently will sign "night night" on his crib page.

Ah, I'm such a proud mama and I must say - I, too, never knew that I would love him this much.

video

We are blessed.

Tuesday, December 22, 2009

Change.

Something has changed, I think.

I remember our life a few months ago. I remember feeling the emotions that I had feared I may feel, as we had been previously warned by our Down syndrome program coordinator that they may surface. Dylan was then 15 months old, an age which was suppose to yield major growth and progression. I didn't see this happening, thus I was not overly surprised to find myself feeling quite badly. I remember writing this post. This post about how frustrated and discouraged I was feeling that Dylan wasn't progressing at the speed that I desired. That he wasn't doing the things that I wanted him to be doing. Surely, there were milestones to be met, had he been following my rules.

Since then, something has changed.

Is it Dylan who has changed? Sure, he has made great gains in the few months since I had written that post. He says "mama" (melts my heart every time!). He army crawls and rolls like a champ. Since beginning a gluten-free diet, his spit up has decreased dramatically and he's beginning to eat baby food with a bit of texture.

Is it me who has changed? I think it may be, but why exactly? Is it acceptance? Patience? Understanding? Appreciation?

Is it, above all, love?

It's difficult for me now to relate to that person who wrote that post. Just as it was probably difficult for that person who wrote the post to relate to the person who had sobbed uncontrollably at the confirmation of Dylan's diagnosis 18 months ago.

It has been a process. It is a process, I am finding. A roller coaster for sure, but lately the ride has slowed down considerably. The drops and loops are few and far between. It's not scary anymore.

The ride has grown familiar to me.

As a matter of fact, being the non-roller coaster type of person that I am, this has, surprisingly, been the most important ride of my life.

Thursday, December 17, 2009

Mama

I thought this would be the perfect first addition to my empty Picasa account.

video

Makes the fact that I lost all of my pictures and videos due to a faulty hard drive a bit more bearable, anyway.

And dang if it doesn't crack me up every single time I watch it...

Tuesday, December 15, 2009

Just in case...

you were wondering...

No, I did not seriously injure myself while attempting to cook dinner for my husband.

Rather, my hard drive blew up last week and I have just recently gotten internet access again.

Please forgive me as I try to get all caught up...

Wednesday, December 9, 2009

A little recap.

Sunday morning, bright and early, I came down the stairs with my best little guy and found our backyard looking like this:



And this.


Ahhh, the first snow.

*

Monday, our GI doctor (finally!!) called us back. And guess what? We still do not know anything! (Gr!) She said that in 99% of the cases, they are able to determine exactly what the problem is by examining the biopsies. Naturally, Mr. Dylan falls into that itty bitty 1% category. The doctor said that the tissue did appear abnormal, but they do not know why. She said and that while it did not appear to be Celiac, we should continue with a gluten free diet as it has seemed to help with the vomiting issues.

It's frustrating, though. To not know for sure. To watch as he still spits up. To have put him through the procedure only to come back empty handed.

For now, we'll continue forward. Onward and upward we go.

*

12 Days of Giving: Days 6, 7 and 8

On day 6, I told my husband that I would commit to making dinner once a week. Er, please know that I am completely aware of just how pathetic this sounds, but believe me when I say that I can't cook to save my life. My husband, on the other hand, is a wonderful cook. As I had mentioned in my mediocre mama post from a week or so age, I want to try harder, I want to do better. So, here I go. It was pretty funny though, when I told Dave that I wanted to start trying to cook dinner one time a week, he looked up at me with a slightly frightened expression and said, "Oh. Um. Ok.". Haha! Ah well. With the help of Everyday Food magazine (thanks Michele), I think it will be fun. Or at the very least, it will be interesting. In the mean time, I just hope I don't burn down the house...

On day 7, I continued doing some more, er, in depth research on a very special way that I am hoping to be able to give...

Today, day 8, I am going to finish addressing our Christmas cards. I am also going to write out a letter to each of our Early Intervention specialists, letting each of them know how much we appreciate them.

So that's that. A little recap.

Sunday, December 6, 2009

12 Days of Giving: Days 4 and 5



Yesterday I went Christmas shopping - finally!! I had the 12 Days of Giving Challenge in the back of my mind, but wasn't exactly sure what it was that I could "give".

I decided to pick out a holiday card for Larisa Hertz. Ever since I read her story on Life With My Special K's a few months ago, I have been following her journey. She is an amazingly strong girl who is currently recovering in a burn unit in a hospital in Kansas. It appears that she will be in the hospital during the holidays, so I decided to send along a card with a small donation as well.

Now, this isn't part of the giving challenge, but as I was walking into line there was a woman who was also walking into line. Clearly I was there ahead of her, but I had 32,412 items in my carraige. She was literally holding 2 items in her arms. I stopped, mentioned for her to go ahead of me and said, "You go. Please". She looked surprised, looked up at me and said, "Really? Are you sure?". I laughed and said, "Of course!". She stopped, smiled and said, "Thank you very much".

It was such a small gesture. So easy and yet it made her happy. But seriously? Do people normally not do this?

*

Today I stole, er...borrowed Bethany's idea to check out the Wish Upon a Hero website. I found a woman in need of winter jackets and clothes for her 1 year old daughter and 4 month old son. I can do that! So, I did.

Now...to think of 7 more things...hmm.

Friday, December 4, 2009

Update...sort of.

Dylan's biopsy results are (finally, ahem) in. The diagnosis is: unclear. Seriously? Yes, seriously.

To make a really long, and annoying story (which will just lead me to frustration, again,) short, I never was able to speak with Dylan's GI doctor this week. And believe me when I say it wasn't due to a poor attempt on my part. The doctor's nurse did call me today to let me know that the results were in, but unfortunately they were not able to determine, by the reports from the pathologist, what exactly is causing the cells in the tissue to appear abnormal. She said that the doctor would be calling me on Monday to speak with me more about it, but suffice it to say, they need to have a "clinical discussion" as well as a meeting with the pathologist to determine what exactly is going on.

For now, we are being told to move forward with the assumption that it is indeed Celiac Disease, and are to put Dylan on a gluten free diet. She said that unless they determine otherwise, we will be referred to a nutritionist who specializes in Celiac, so that we can learn more about which foods we are able to feed Dylan.

So we shall see.

Life with Bubba, Chicky and Nika

Now, don't think that I have already given up on my 12 Days of Giving Challenge! I have been doing it, but didn't think that I needed to dedicate an entire blog post to the fact that after over 5 years of not having a primary care physician, I finally picked up the phone and called my insurance company to determine who exactly is in our network. Not only that, but I then called the doctor and scheduled an appointment for a physical. Go me! Oh, I know it seems silly, but eh. I'm giving the gift of health to myself. That counts! Doesn't it?

So, that was Day 2.

Day 3 is even more exciting because I decided to give the gift of time to my husband! After 3 years of he and I pretty much never leaving our house to do anything social (bad, I know, I know), I called a woman whom my friend recommended to babysit for us on a regular basis. Yeah!

So, there it is. An update of sorts.

Wednesday, December 2, 2009

12 Days of Giving: Day 1

Aaaaaand on a more pleasant note...

12 Days of Giving: Day 1 (I'm a day off!)

Life with Bubba, Chicky and Nika

Bethany from Life with Bubba, Chicky and Nika is sponsoring a 12 Days of Giving Challenge and has inspired me to participate!

For the next 12 days, I am going to think of some small way that I can help someone, anyone. I am not sure exactly what I have to give, but I am committed to thinking of something each day.

This morning I gathered up canned foods, popcorn, oatmeal packets, pudding, jello and a whole bunch of other food items from our home and put it in a nice bag which we will bring over to The Lazarus House. This care package will also include our old television, furniture that we do not need, various toys that the kids rarely play with, some old clothes and shoes of mine and random baby items that we no longer use.

Ah. I feel better, already. Thanks Bethany!

Trying

I am trying.

Trying to be patient. Trying to figure out how 5-7 days doesn't really mean 5-7 days. Trying to understand how one doctor can tell me to call the hospital on Monday or Tuesday for the results of Dylan's biopsy, and another can tell me not to call back until at least Friday. Trying to comprehend how I was specifically told, by the doctor who preformed Dylan's endoscopy, that the results would be back in 5-7 days and am now being told that that information wasn't accurate, that it wasn't correct, that she can't understand why I was told it at all because naturally 10-14 days is the norm for biopsy results. Trying to wrap my head around the fact that this, this!, is the best hospital. Trying to hold back, so hard, from calling the hospital right now and demanding that I speak with someone, anyone, who might possibly be able to help me.

I am trying.

But I sort of feel like screaming.