My Hero and My Heart

I'm a lucky Mama. I know a lot of people who may find my blog by accident or by searches may read my family's story and think it tragic. But I don't, not really. I've really been doing some serious soul searching these past few months. The kind of search a person does when their lives take them in a completely unexpected direction. And I have am much more at peace with how things have unfolded.

My daughter was born at 27 weeks. My water broke at 22 weeks. I was told she would not live. But we proved those doctors wrong! As a team we are unstoppable! Every morning when she wakes up, every minute when she is running from a diaper change, every goodnight kiss reminds me of the incredible battle we won to have her here with us. I am so grateful for her life, her smile, her love. She is my Heart.



And my son. My son. He is nothing less than a Badass. Born at 28 weeks measuring a huge 3 pounds 7 ounces and 17.5 inches long, he is still a BIG Boy. William suffered extensive brain injury and his optic nerves are malformed. Many who have not expected much from him have been impressed by his drive and craftiness. My Mister has learned to overcome some of his spasticity and is gaining function due to sheer determination. Once he could not bring his hands to his mouth. Now, he can! Once he could not hold a toy at all. Now, he can! Once he was expected to have no mobility at all, ever.... Here is the big one... are you ready.... ???... He is starting to combat crawl. I wish there were words to adequetly describe how hard Mister works to do these thing. How he tries over and over and over... he gets so frustrates and "yells" about the things he can't quite do. But he is learning. What a wonderful thing to be able to witness first hand- the sheer power of determination. Driving forward, achieving the unachievable. My little guy. My Hero.

My Big Girl

My Sweet Girl, my little love, is walking unassisted. I am such a proud Mama. It was like night and day; one day she was scared to take more than a couple of steps and the next she was walking all around. I still can't believe it when I see her toddling around with her arms in the air like Frankenstein. How far she's come in the past 21 months!

Every day my heart hurts from all the cute. Margaret's little personality is coming out full force these days. I guess it is the willfulness of her age. She is defiant and cranky and opinionated. Then in the next minute she is the sweetest little girl in the world, full of hugs and kisses. I love all of it.

Right now her favorite toy is some magnetic letters David got her from the dollar store. She has been obsessed with the alphabet for quite some time. I estimate that she knew all her letters by the time she was 15 months adjusted, maybe earlier. And now at 18 months adjusted, I'm almost certain she knows the order, too. At first, her extreme interest and skill at learning these scared me. I was a afraid that she was showing signs of hyperlexia. These days, though, it has become apparent that she is truly not showing any other signs of this disorder so I have been able to breathe easier and just enjoy her playing with her letters while repeating their names to herself, "coo", "sssss", "Eeee!!!", "ahh", "exsh", "huh", etc.

Margaret has also learned all of her numbers (digits) in the past couple of weeks. She has a favorite number, seven. She will sit in front of the fridge with the seven in one hand and another letter or number in the other and the two have little conversations. This little dialog invariably leads to her "hugging" the seven between her shoulder and jaw and carrying it all around the kitchen in this position. Other times if I ask her where seven is, she will grab it off the fridge and hug it while cooing like she is loving on it.

I told you, so cute, it hurts.

AhOww...

Because my Mommy-heart was having problems with the doctor's diagnosis of seizures after the (quite experienced) EEG tech told me that she didn't see anything concerning, I decided to seek a second opinion regarding William's seizures. (Not to mention the prodding I got from all your comments... thank you!)

This second Neurologist (Dr. Hippie from the NICU) said that she does NOT think that he is having seizures. She said his EEG was abnormal but that is to be expected with the scarring that is evident in brain based on the MRI. She wants us to take him off the phenobarbital.... hooray!!! The doctor did say that with his type of damage and location of brain scarring, she does expect that he will have partial seizures down the road, age 2-3. We will cross that bridge when and if we get to it.

None of our Neurology appointments, however, are purely good news or really even mediocre news. This one was no exception, unfortunately. I did get to review William's MRI with the doctor while we were there. No super big surprises, I guess. Bilateral diffuse PVL with ventricle enlargement (right side much worse than left). Moderate amounts of brain scarring (left worse than right, ironically). Thinning of the corpus collosum (kind of goes hand in hand with the PVL). And the worst news, cerebral atrophy. The doc says this isn't terrible, necessarily, and that even a term infant's brain isn't fully developed at this stage. She checked William's reflexes and found that his reflexes were not "horrible" and noted that he was tight through his legs but even tighter in the arms. When she put him on his tummy, he held his head high and then promptly rolled over... I was so proud! William did keep his hands fisted the entire visit but this is unusual for him. I think he did it because the doctor was just messing with him so much.

At almost 3 months adjusted, developmentally, William still seems to be doing okay. I wish his head control was better but he is swiping at his toys very well now when he is on his back. I think he will soon grab one! Because his arms are so tight, he has trouble getting his hands in his mouth but, WOW, he wants to do it so much! I think if I can keep him looser like how the Neuro stretched him out, he will finally be able to eat his hands.

But, best of all, William is now cooing. He has one "word" that he loves to use and really likes to "converse" with me. He says "AhOwww" and then I'll say it and then he will repeat with a big smile. He seems to have a great time doing this over and over and over again. I know I enjoy it.

Dr. Hippie told me that she has a "handicapped" child. I had been told this by someone else but would have never dared to ask her about it. I would love to talk to her about her experiences raising her son, finding therapists, dealing with school issues, having a career, etc. But I feel I need to wait before I get too personal with her. Our relationship is likely to be a long one; I've got plenty of time.

There is so much going on in my life right now I would love to blog about but I am having trouble finding time. It is the end of our insurance year June 30 so we are packing in as many appointments as possible. Very time consuming.

First Smile!

My babies are working really hard this week!

William gave me his first awake smile this morning. For a while he has been yawning whenever he looks (can find) me and I thought that was really weird. He'd meet my gaze and immediately yawn. David had wondered outloud if maybe William was trying to smile and getting mixed up. I'm not sure if that is what it is but this morning William found my face for a second, gave a little smile, and then promptly yawned. I gave him a kiss and then he did it again.

I'll try to capture this if/when he does it again but you know how hard it is to catch a fleeting grin on film.

First Step

I'm am so excited! Margaret took her first step to her Daddy this evening. It took a LOT of coaxing and she just took one... but HOORAY!!!! She didn't even have on her Dafo PattiBobs to help her feel more stable! I'm so proud of her!

Sugar Kisses

My oral aversion baby gave me her first kiss tonight. I had been waiting for 19 months, 1 week, 1 day, 22 hours, and almost 30 minutes for that moment. It was wonderful.

Some good news, finally!

A picture says a thousand words...

Tummy time: check out that head control!







William is cross eyed here because he is trying to focus on a rattle we are shaking!






Yeah, I cried.