Wordless Wednesday, Halloween Edition

Wordless Wednesday... a day late.

Gustav and kids update

Gustav really did put the smack down on our little city. At our house we were without power just short of two weeks which was much less time than I would have initially estimated.

And then after the lights came back on, I was thrown into trying to juggle William's full therapy schedule, getting Margaret to and from Mother's Day Out, and attempting not to let our house sink further into chaos. I've only been marginally successful. All of you other Mommies who have a full plate of therapy, a clean house, and a JOB... my hat is off to you. I really DO NOT understand how you fit it all in. That being said, I am looking forward to the day I can work again. I really miss doing something for myself. And before you ask, no I'm not planning on going back to grad school. Just not worth it in the grand scheme of my life right now. Maybe when I'm old and have time to be bored again...

How are the kids? Great!

Margaret has matured so much. I just can't believe how much of a child she is now. I miss my little baby girl! But she loves "school" and all things learning. Her creativity continues to surprise me. I just didn't realize how clever children are at this young age. Margaret loves to help me clean up little spills and dust. She is a great storyteller and can also sing decently on key. Her greatest strength continues to be her love for reading and numbers. Is she reading? A little. We don't really push it so I probably underestimate how much she actually knows. But I have to say, she is much more on par with her peers now and that makes me happy. While I loved the amazement in people's eyes when they realized that my 12 month old knew her alphabet, it is a sigh of relief to me that she is more on par with her peers now in pre-reading skills. The best thing of all is that she starting to enjoy interaction with other children... and will play with her brother from time to time. He loves it and so do I.

William has gotten huge. His 24m clothing is getting to be a bit too little for him and 2Ts are just right... he is 20 months adjusted. So, he is about 95% on the SPQD CP growth chart. While this is awesome that he is so healthy, it is really hard on my old bones. He is so hard to hold now. I'm guessing about 28 pounds and maybe 36-37 inches. But that is all ragdoll weight. When he is in my arms, he is usually completely relaxed so I get now help from him at all. And then if he gets excited for any reason and stiffens up, his weight is easier to hold, but he is so long that it is just awkward. Consequently, my carpal tunnel is keeping me up at night and my elbows hurt during the day.

Developmentally, William is still making slow steady progress. He has started to tolerate being put on the floor for a few minutes at a time now. I'm am hoping that he will learn to roll now that he has the opportunity. There are some sounds that we are calling words now. William consistently says "Addie" which means "Daddy" and he will say "Ahg" for "again" sometimes. He is trying so hard to talk but it really is exhausting for him. And it is slow going with ST right now b/c he won't stop crying during therapy. I know that given the opportunity he would be able to use a simple choice communicator to tell us what he wanted between two things. He is getting some switches for his birthday. What a lucky boy. ;)

We still have no approvals from insurance for any type of equipment for William. November 20th will mark a year since he was first measured for a seating system. Yep, that's right. I've been holding him for his entire life so far. Now we know why my elbows really hurt.

Here we go again...

Keep my state, my family, and my friends in your prayers please. As we prepare for the landfall of Gustav tomorrow, my mind can't seem to get off the NICU and Katrina/New Orleans. My brain is like a broken record all day today.

Already today, our airspace is full of the big helicopters. Ambulances staged at gas stations. National Guard out and about.

We are inland, but the eye is forecast to come within 50 miles of our city as a category 3 storm... this one is going to be rough.

So, if you can please say a little prayer for all of us here. Much appreciated.

Cory

I am the crazy lady who comes up to you and wants to talk about your disabled child. Or if you are disabled, I chat your ear off... asking a million questions. I am sorry if I freak you out. I'm just looking for some reassurance and guidance on this crazy ride.

Over the past few months, I had noticed a man who grocery shops at the same store I go to. He is in a wheelchair and seems to have CP involving all four limbs. The first time I saw him, I was so happy to see such a well functioning adult with Quad CP- he is a great driver and also speaks well. Such a relief to see as a Mom.

So over the past several weeks, I have been building the courage to speak to him. I am always so worried that I will offend someone when I approach with a head full of questions. But this past Tuesday, I got over my nervousness and approached him. And, wow, I'm glad I did.

Cory is an LSU alumnist who serves on the City Council for the Disabled here. He knows all the best doctors and treatments in our area. The depth of his knowledge is remarkable. Some of his personal story is heartbreaking since he now has complete hip dysplasia due to not receiving services at a young enough age to slow down his hip deterioration. But he is doing so well. It eases the worry in my Mama heart.

Sometime soon he and William will meet. And William will have another very valuable player on his side.

Thank you, Cory! I am so happy to have met you!

Mischief Abound

I left the room for two minutes, tops.

Wiggled out of his bean bag chair trying to grab the DVD player.

Kitty Litter is FUN!

You can barely see but his entire head is covered in sand... thanks Big Sister! I LOVE IT!

I heard "Rub, rub, rub" and then William was covered in mud.

Caught!!

My favorite wisk is also William's favorite wisk. It is a little harder to use now.

Out of the Shadows

This winter was rough. Our rolling illnesses continued, culminating in a GI bug that wiped our entire house out. Since then, knock on wood, we have been relatively well! A full three weeks now. Of course, Margaret has her ever-present sinus infection and William is gagging on his reflux but nothing big to slow them down any.

Our biggest even of late was Margaret's transition meeting. See, my "baby" will be three this summer and she won't be eligible for free Early Intervention services through the state anymore. So, if a child needs services, the parents can have the child evaluated by the public school system. If they qualify, the school system will provide services after the age of three.

The meeting was yesterday morning. Margaret was in a mood... I think hungry. And there were six or seven people in the room all trying to get her to do things. I can't believe she didn't shut completely down. Why do they think that having so many people in the same room with a 2.5yo is conducive to evaluating how they behave normally? Despite all the "issues" I had with how the eval was handled, she performed pretty well- did as well as she does at home. When we first got there, though, she immediately zeroed in on an alphabet sign they had taped to a door. Of course, in her two year old brain, that meant there were LETTERS behind that door! Lots of whining and crying to open the door. Finally, I told her it was a bathroom (really don't know). She looked at me as if I had just sprouted another head (because that just doesn't make sense, Mommy!) and stopped trying to open the door.

Despite my concerns over her obsession with letters, her ability to read some words, and her social/sensory challenges, she didn't qualify for services. I'm not sure if I am scared or excited. The thought of her not getting OT for her sensory challenges gives me a mini panic attack. But how much of that is just because I feel comfort in having another set of eyes on my daughter? I don't know. I'll mention it to her OT and see if she thinks M is ready to go it alone.

The social worker who was there called me "relaxed". Ha! That is just what happens when I am overwhelmed. I think "nervous" and "frantic" better describes my usual state of mind.

At the very least, this meeting was a good dry run for William's meeting in a year or so.

Speaking of, my boy is growing like a weed! He has to be 25-28 pounds by now and I have thrown my back out twice already hauling him around. He and Margaret wear the same size shirts and diapers. Margaret's legs are about twice as long as William's, though.

William has been eating pureed food for a while now and is doing well with the stage 2 foods. I tried blending up some of our table food to give him but he hated it! I guess the texture is just not as smooth. Poor fella was spitting and gagging. It will be a while before I try that again. He does pretty well gnawing on cookies, though.... hmmm.... Methinks he doesn't like my cooking. Still, I am really nervous about moving on to stage 3. Will all M's former eating difficulties, I guess I'm just a bit gun shy.

Also, my Mister got some glasses! At his last Ophthalmologist appointment the doctor noticed that his eyes are crossing a bit more. So we are trying glasses to see if that helps him. So far it is hard to tell if they are doing anything. We still have six weeks left of this "trial" and if the glasses don't help, we will move on to patching. He's gonna love that. HA! I do say that he looks so stinking cute in them, though. So I hope we get to keep them!

We have put all plans to go to China for stem cell treatment on hold. A month ago, I was ready to go for their SC treatment of optic nerve hypoplasia. After a discussion with his eye doc, I have changed my mind. She said that since William's ONH is not a "clear cut" case, she feels that he would not get the benefit that many of the children who go seem to have. William's eyes have more healthy tissue than most kids with ONH so she feels his vision issues are more from his Cortical Vision Impairment. We haven't thrown China plans completely out the window. There is still a chance that we may go for (so called) CP treatment. But, for now, it is not an active topic of discussion anymore.

I have a lot to catch up with here but I won't do it in this one post. I post again, soon. Promise.

Look how big!

So busy!

February is looking hard. David is going out of town for the majority of the month, leaving me in charge of two little ones. I told him that I am not qualified for such a job but he assures me that I am.

How are the kids? Doing okay. We have a rolling sickness in the house. First Margaret gets it, passes it on to William by the time she is almost well. Then when he is almost well, she picks up something else. And the cycle continues. The latest illness has settled in Margaret's lungs which means she will rattle and cough for a month. When is spring?!?

Margaret is running a bit now. She still falls over if someone even looks at her funny but in general, she seems to still be progressing with her motor skills. No jumping but we are working on it. It is only when I see other kids much younger than her doing these things that it hits me that she is delayed. Otherwise, she seems perfectly fine to me.

William has had a huge growth spurt and I think needs a baclofen increase. Currently, he is on 7.5mg a day. This dose was started when he was 17 pounds... he is now up to 22 pounds (a moose) so I think it is time to increase his dose. His muscle spasms are out of control and he is losing some of his arm control b/c he is super tight again. Diaper change also seems to be very uncomfortable for him when I lift his little legs, stretching his hamstrings.

All in all, not much has changed. I will try to get up new photos soon!

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.

An update in photos (huge amount... sorry!)

I'm so sorry I have been absent. One of my resolutions is to be better about my blogging...

Things are going well here. Babies are getting big.