Tuesday, November 27, 2007

Halloween and Thanksgiving

I have been so bad at updating. Things are just so busy these days. I haven't even done a post about our Halloween!

Halloween here was HOT and the costumes were like little roasting bags for my babies! They didn't seem to mind, however. William loved being outside when the sun was not as bright (he has some photophobia) and was so calm! He did a lot of staring at his Daddy, who carried him for much of the night. Margaret also had a great time. It didn't take her long to figure out that people were giving out candy and she loved grabbing what she wanted out of the bowls. She also knows no fear and walked right into a few houses and explored. Most people thought it was really funny but it kind of scared me...

Thanksgiving was good even though William had been fighting a cold. Our family took the five hour drive and spent the holiday with David's parents. Margaret refused all Thanksgiving food. William threw up about four times. It was the best Thanksgiving in a while... since 2004. 2005, fresh NICU graduate sequestered for the winter. 2006, in the hospital days from having Mister. This year was nice in comparison!

William is now over his cold. He is a baby who does the cough-n-puke so I'm sure he has lost some weight. There were several days when he kept no food down at all. Margaret has a bit of a runny nose today. Daddy is snorty and I've got a bit of a throat tickle... I'm praying this is short lived. I was hoping that this winter would be more "well" since it is M's second at Mother's Day Out. She is certainly getting over her colds faster but I still get everything she brings home. Blah!

Saturday, November 03, 2007

Long Overdue

I just hate letting those toothy pictures fall to the bottom of the page. Seriously, how cute is my Sweetie???!!

Things are going well here. Margaret has finally gotten used to her new teacher at school and resists leaving when I pick her up! She shouts, "No WAY!" and runs to the far corner of the room. I'm glad she likes school so much but it still makes me feel a little bad that she doesn't always prefer me anymore. She even eats better at school!

Around the house Margaret is talking up a storm. Finally. However, when she is around her Speech Therapist, she clams right up. I don't think M has done anything other than repeat the things her ST says. About two weeks ago, I got a alarming note from the therapist saying that she saw "red flags" about M's lack of speech and anti-social behavior. I was very pleased to be able to call her immediately and say that we had just had Margaret evaluated by a Neurologist who saw no "issues" at all to worry about. Still, the therapist wants me to call an agency in town and place Margaret in a speech and hearing playgroup. Yeah, I'm not going to do it. Instead, I racked my brain trying to figure out why Margaret exhibits the behaviors she does.

And I did figure it out, I think. What I think is going on is that her old tactile defensiveness has reared its ugly head again. So, I have arranged to have M seen by, count 'em, two OTs through Early Intervention. I guess I naively thought that after we tackled her early defensiveness, we were done. Nope. But, I do know she can be helped and does show improvement with sensory therapy. I'm just glad that her ST made me think about this in such a way to be able to get her the proper help.

Otherwise, Margaret is being her sweet, funny, loving self. She is still a Daddy's girl, showing so much favoritism to make me a little jealous at times. When Daddy is gone during the day, Margaret loves to come up to me and firmly state, "Daddy. Work." And when he comes home, the room lights up with her smiles and squeals, "Daaaie, Daaaie!"

How does Margaret feel about her brother? She is definitely warming up to him. Tonight she hugged him of her own accord with no prompting from us. And she cries and screams "NO!!! MINE!!!" if anyone other than me tries to push his stroller when I am dropping her off at school. She is also very concerned with any crying he does. "Brodah cwying!"

My favorite thing of late, though, is her new game of "Night Night". She will gather a group of toys: stuffed animals, figurines, rattles, whatever. And then she will put them all to bed, sometimes on the hearth and sometimes in her bed. "Frog, night night. Elmo, night night. Turtle, night night. Toy, night night." Occasionally, one will get extra care. "I coming, I coming!" Followed by the toy being covered in a washcloth and kissed. She is so gentle and it is so cute to see. So cute. Makes me feel good to know that is how she views Motherhood. What a good little Mommy she is!

Friday, October 19, 2007

An EEG and a Tooth

The past couple of weeks have been full of excitement for us! William had a couple of episodes similar to infantile spasms. So, understandably, we were very scared. The Neurologist got him for an EEG as soon as she could. We got the news yesterday that he is NOT having infantile spasms and I couldn't be more relieved!!

He is also now up to his full dose of Baclofen and I can see some good changes in him. Again, they aren't knock your socks off things but the little things are so good! He can now get his hand to his mouth and keep it there for long enough to get a good chew on his fist! He can bring a toy to his mouth (a Winkel) and chew it! I have seen no extra floppiness at all. His mood continues to be good.

And he got his first tooth!!! He is a terrible, terrible teether! I'm thinking that because he can't gnaw on things like a typical baby, he gets crankier than one, too!

Tuesday, October 09, 2007

Update on Baclofen

We started giving William Baclofen last Thursday. This is a drug to help reduce his spasticity. We are ramping up the dosage from 2.5mg a day to 7.5mg a day over the span of three weeks. My goal in starting this treatment is to help him have more use of his hands.

It has only been a few days on a very low dose but I am being asked if I see a difference at all yet. My husband says he sees no difference. But I think I do.

He, by no means, is grabbing or playing with toys. But I think he is able to get his arms out of his super stiff extension more. He is bending ever so slightly at the elbow now in order to grab my hair when I eat his belly. (nothing like hypertonic grip on the hair!)

Another change that I didn't expect is that his mood has improved dramatically, especially 30 minutes or so after his dose. Why? I'm not sure. I'm thinking that part of his crying and crankiness was due to discomfort in his muscles. Perhaps the spasms and hypertonia are quite uncomfortable. I don't know anyone with moderate/severe hypertonia to ask about this.

Also, he is vocalizing a lot more. Is it because of his improved mood or because of decreased spasticity in his mouth??? I guess I'll never know.

So far, I am not seeing any extra floppiness in his trunk or neck. I'm hoping I don't since he has a hard time with head control as it is.

So that is what is up with the Baclofen. I am hoping that with our next dosage increase, he will gain more function of his arms... keep your fingers crossed for him!

Saturday, October 06, 2007

Look at me!

It is only for 10 seconds or so and it takes a LOT of positioning by Mommy BUT...

Friday, October 05, 2007

Tuesday, September 25, 2007

Plugging Along

We are still here just plugging along. Both babies have been sick so things got crazy for a while. I'm not even sure if I got sick... didn't have time to think about it, I guess.

We had a wonderful visit from my Mom and she surprised me by having my sister in tow. How great was that??? I haven't seen my sister since Margaret was fresh home from the NICU! There are no words to express how much fun it was having a shopping day with my Mom and Steph. I had forgotten how nice it is to have girl time. ... now I'm craving it... (Steph, please come back soon!!!!)

In not so fun news, I am having to get surgery on both my hands. I am going to try to schedule it two days after Christmas since recovery will be long and painful. I don't want to have to feel bad during the first Christmas that Margaret *may* "get it". I'm having two procedures done on both hands. First is a carpal tunnel "release" and second is to fix the extreme tendonitis in my thumbs. The pain has gotten so bad that I can't sleep at night. I can also no longer open things that twist off or grip and lift things with my hands. This poses a major problem since William isn't going to be motivating himself anytime soon. AND he is a big boy. So, I thought I'd better do this while he is still 20 pounds rather than 40. I will not be able to use my hands for six weeks. I am having to schedule grandparents to come help for weeks at a time. Thank goodness we have parents who are willing to do this.

Margaret had her first trip to the dentist a couple of weeks ago and it went well. As I suspected, she has enamel hypoplasia on her top front four teeth. So we have to be extra careful with the sweets, juice, etc. And, of course, we need to use flouride toothpaste for extra protection.

Margaret has been going to "school" for about a month now and she loves it. She doesn't even care when I leave in the morning! And before we get there, she is singing her teachers' names at the top of her lungs in the car. (this is very cute, btw) We have received lots of colored pictures and paintings and glue projects from her. Even though I would love to keep every single thing she ever does, I know this is not practical, so we are limiting ourselves to the favorite one of the week.

William... what an amazing little guy. What is he doing, you ask? Nothing too much different but the little things mean so much. We got our very first belly laugh and squeal the other day. I have it on video but I'm afraid to post it as it looks like we are really being rough with him... but he obviously loves it. He adores being jostled and bounced and tossed about. And I love the reaction I get.

He also is improving in his ability to get his fist in his mouth. He can get it there about 1 out of 3-4 tries but then he gets so excited that he gets spastic and loses his hand. If he can just happen to be quick enough to start sucking, he calms down enough to keep his hand there for a few seconds. I've seen him do this a few times and I'm always so happy for him!
Tummy time (over the boppy to keep his arms forward) is going well. The past few days he has started pushing up on his arms some. And yesterday this pleased him so much that he started his "chuckle" and "talk" while he was doing it. Usually tummy time ends because he starts moving his legs like he is crawling and does a face plant. This little boy wants to crawl. I am still trying to figure out a way to help him. I tried holding him at his ribcage, but this just causes him to drop his head and freeze there. I'll keep working on it.

I swear, his vision is getting better. Yesterday he tracked Margaret when she walked through the room. He has visually noticed the TV. I know the structures of his eyes cannot improve but I really believe that his ability to use his vision is getting better every day. We did find out at the second Ophthalmologist appointment that he is moderately farsighted and may need glasses at our next visit in six months. How cute!

So, we are doing really well here. Margaret is a sweetheart and William amazes us every day. Mommy and Daddy are doing well. The house, though, it is a total wreck! (it is one of the last things on my mind these days... )

(I wanted to add that I got Margaret's Proud Preemie shirt from http://www.brightlittlebeginnings.com .)

Thursday, September 06, 2007

Harder than I Thought

As the months roll on, it is becoming more apparent that William has some serious issues with his motor function. We knew this would be the case, but, still, it is very hard to watch your child fall farther behind his peers. Much harder than I thought it would be.

It is hard to see other typical babies around town. Sometimes it even hurts to look at Margaret and think that William will probably never be able to do the things that she does.I have taken the habit of telling the Pediatrician's staff not to ask any developmental questions about William when I bring him for his well baby visits. So I get to avoid having what he is NOT doing shoved in my face.

Yesterday was unavoidable, though. It was time for William's six month review with EI. The questions were terrible even though they were asking them based on his adjusted age of 6 months. I hate saying "no". I did get to say "yes" on some things related to speech and a few "sometimes" answers for a few fine motor things. Overall, though, he is behind. I don't know why, even though I expected it, it is so hard. I've been pretty weepy since then.

I hurt for my boy who wants so badly to do the things he just can't. I can't imagine that it gets any easier as he realizes there are more things he wants to do. For now, he would be happy to be able to hold a toy in his mouth, suck his thumb, or sit up.

Does it make me "anti disability" to wish I could heal him, that he didn't have to struggle? No, I don't think so. It makes me a Mom. I want both of my children to be able to do whatever in life that they choose to do. And today, William wants to chew a toy.

Cerebral Palsy sucks.

Thursday, August 30, 2007

Memories of Katrina

On the two year anniversary of Hurricane Katrina, I am being bombarded with reminders of that time. It was a scary, surreal, and distressing time in my life that I still remember like it was yesterday. So hard to be believe that already two years have passed since then.

When Katrina came through, Margaret was about 4 weeks old and had just started the apnea/bradycardia phase of her NICU stay.

The night before the storm hit, I set my alarm clock for something crazy like 4am and went to sleep worried about what was to come. New to a coastal state, I had no idea what to expect. David and I had planned to get up before the storm came through so that we could get to the NICU and be with Margaret. But there was no need for an alarm clock.

You could hear the thunder hours before the winds or rain started. I laid awake in bed and listened to the ominous sound. Finally, I got up, made a pot of coffee and David and I got ready to make the drive to the hospital. It was still well before daylight when we made the short drive but the winds were already picking up and there were limbs down. Our tiny car was whipped around but not so much that we needed to turn back. Still, my knuckles were white on the door handle.

The NICU was eerie so early in the morning. David and I were the only parents at the hand washing station. Inside it was business as usual except that every Neonatologist on staff was there. At the six o'clock shift change instead of the nurses leaving until their next tour of duty, they checked the available rooms for their sleeping assignment and hoped they liked their roommate.

I only left Margaret's isolette a few times that day. Once, I peeked out the hospital windows and saw the roof of some structure or other was in the courtyard and that power was out everywhere except our hospital. I had seen the flicker when the electricity went out and the NICU went to emergency power. The one time that the emergency power failed for a few terrifying seconds (Margaret was still on breathing support), the nurses were all pointing to babies and picking who would Kangaroo which babies. A nurse and I were preparing to pull Margaret out of her isolette when the power flickered back on.

David and I returned to our powerless house that same day during the early evening. Because we are a little inland, we had not prepared like we should have. We had plenty of candles (because I'm a girl) but our food choices were limited. The first few days of no power were not too bad. Because we were on the west side of the storm, the winds had pulled down some cool air from the north. We only heard bits and pieces about what was going on in New Orleans... most of our information came from the radio and nurses, many whose families had lost everything.

After the first few days, things started to get a little crazy. The airspace above our city was filled with those giant military helicopters. Night and day you could hear them like in a war movie. Suddenly the NICU census increased 100%. Every nurse they had was working and had been there days on end. I no longer could fit in the space next to Margaret's isolette because of all the babies. There were camera crews and news people all over the hospital and in the unit. In the halls were arriving babies from life flight helicopters that landed on top of the parking garage. Nurses crying and apologizing to parents that their babies didn't make it through the flight. There were so many babies that no one knew where the parents were. There were such tiny babies all alone.

As the days went by, I gradually began to see more Moms in the NICU. There were many tearful reunions. One of Margaret's neighbors' Daddy showed up. He was a fixture our remaining days in that pod. The nurses began to be able to get some sleep and things slowly calmed down to near normal, although still very crowded.

While things stabilized at the hospital, our city was in borderline chaos. At least that is how it felt to me. There were stories on the radio about shootings and rapes and armed robbery. Stories of gangs roaming the area where we live. The University was shut down because of rumors that there was so much violence. Most of these stories we know now were untrue. Although a few stores had opened a few days after the storm, the hours were greatly reduced, and they were guarded by the National Guard with very large guns. The shelves of these stores were cleaned out, anyway, most people went for the air conditioning and just to have something to do. People lined up at places to buy ice for hours before they opened. It was nearly impossible to buy any.

The churches began to fill up with NO residents. All of our neighbors were housing people they had never met before. I donated most of my maternity clothes to the shelter housing pregnant women next to the hospital. There were so many people living in their cars. You could see them in the parking lots of grocery stores, mostly. Everywhere, you could hear the hum of generators. Lines to fill up a gas tank rivaled those of the 70's gas crisis. Traffic was terrible. It took hours to go a few miles. Calling someone on a cell phone was futile. All circuits were busy for at least a month.

After nearly two weeks, we finally regained our electricity. I was able to see the images of NO that almost everyone else in the country had seen. I couldn't believe my eyes. I couldn't believe that such destruction had hit so close to my home. The images still haunt me. That entire time in my life still haunts me.

In early November, Margaret was released from the hospital and my entire world became centered around her care. And that is when the hurricane ended for me. However, our city still shows the effects of that time. Our state is far from recovered.

I hope all those babies made it home.

Thursday, August 23, 2007

More Video

I swear, I'm going to do a written update soon. Right now my brain is so jumbled I am having problems putting together sentences. Ah, I love severe sleep deprivation.

Saturday, August 18, 2007

Just Some Pictures of My Sweeties

And, yes, at 2 she still can fit in the front pack!

Friday, August 17, 2007

Tuesday, August 14, 2007

The Diagnosis Details

Look at that sweet boy! Isn't he so cute?

Yesterday we had our third Neurology follow-up since the NICU. And even though we got the CP diagnosis, I did not leave feeling like I had been hit by a truck. I was sad, sure, but my views of CP have matured since his last visit. I'm sure I've still got a lot to learn but now CP is no longer a big looming doom monster.

Our Neurologist (Dr. Hippie) is wonderful. When she examines him, she tells me everything she is looking for and what she finds, how severe it is, and even a little about how she feels it will affect him. The other Neuro we had seen just examined him and then said, "Well, he is showing spasticity and I am concerned about seizures."

During the exam, Dr. H agreed that William's adductor muscles are tight as are his ankles. His hamstrings seem to be okay and his hips are still very flexible. So that is good. William does still have decent stepping reflexes although his legs do scissor quite a bit. This will probably make walking difficult in the future as his knees will probably scissor after his lower legs straighten with age. No big surprise. Wheelchair = okay. Remember? She also said, "His head control is coming along." I nearly cried with joy.

A bigger concern is that he is not able to use his arms or hands for play yet. The doc didn't seem to be too ultra concerned with this right now.

And, of course, my biggest concern has been his head growth. I am happy to report that he had really good head growth since his last visit and is getting closer to the curve! This bodes well for his cognitive function. We were concerned about profound mental impairment. Right now that doesn't seem likely. Hooray!!

We are also going to try wean him from his anti-seizure medication since we will be starting Baclofen in a few months. I pray that he doesn't develop any seizure activity during or after the weaning.

Over the past couple of weeks I can see a huge change in William's behavior. He is "waking up", so to speak. I think he may be seeing better, but I could be wrong. I do know that he really wants to play and not be held so much. I am busy trying to adapt toys to let him be able to play on his motor level and also challenge him some. Like his sister, he loves to rough house. So I frequently count "1, 2, 3" and then jostle him around on the floor. He loves it! I'll try to get a video but since Daddy will have to be here for that, it may be the weekend before I can post it.

I am really looking for toy suggestions you may have. Bright lights, noise, and/or vibration are the things that we look for. I can hold up a toy and operate it for him, it just needs to be obnoxious enough to get his attention and perhaps motivate him to reach and touch it.

Monday, August 13, 2007

Cerebral Palsy

We have the diagnosis. I will update more later.

Thursday, August 09, 2007

About the Video

I just wanted to say a few things about Margaret's knowledge of the alphabet, numbers, and now some words.

This is not something we trained her to do or even practiced unless she initiated letter play. We do not have a house full of "educational" toys that teach her these things. Nor do we let her watch many of those baby developmental videos.

What we have done is read to her every night and every day starting when she was about 8 weeks adjusted age. From the beginning she has loved, loved, loved books. She seemed very alert and aware of them from the moment we introduced them. Then her PT brought over a book of the alphabet to entice Margaret during tummy time. That was the beginning of her love affair with letters. She would ask us to read that book over and over... many, many times in a row. I hated it. I hid it, sometimes.

One day her Grandmother told me that she knew some of her letters. I thought she was joking. Margaret was about 8-9 months adjusted at the time. But sure enough, Grandy would ask, "Where is the A?" and Margaret would point to an A on her shirt. I was totally blown away.

Her interest in letters intensified through the months and her first words were the letters of the alphabet. I estimate that she knew the alphabet by 15 months but that is hard to know for sure. A few months ago, I decided to teach her numbers and she learned the digits in a few days. That was the only time I have tried to teach her these things.

At 2 years old, she knows her alphabet, capital and lowercase. I had no idea she knew lowercase until the day I filmed that. She also knows her numbers up to about 17, I think. Could be more by now. She only counts to six or seven but she recognizes the other numbers.

This week she has started to show that she knows some words as well. Go, ball, fly, cat, bug. She really shocks me at times.

I don't think this is anything we have done as parents. I think she just has an incredible visual memory. I admit, though, this is a fun "trick" to show off to the relatives.

(top pic is of her at 8 weeks loving a first book at Christmas time.)

Wednesday, August 01, 2007


Dear Baby Girl,
Two years ago you came into this world. You weren't kicking or screaming but you did give a little kitten meow to let us know of your arrival. It was music to my ears. We sat on pins and needles through your months in the NICU. We hibernated the first winter when you came home. We held our breath while watching you slowly hit your milestones on your own timeline. And now you are two. You are beautiful, hilarious, perfect.

I can't believe the time has passed in one giant joyful blur. Thank you for fighting to stay with us. Thank you for teaching me just how much I can love someone.

I love you with all my heart,

Thursday, July 26, 2007

Next Week

My teeny tiny baby is going to be TWO next week. I can't believe it. Where has the time gone?

Saturday, July 21, 2007

I'm it?

I've been tagged by Angela to post eight random facts about myself.

I have to post these rules before I give you the facts:

Each player starts with eight random facts/habits about themselves.
People who are tagged need to write their own blog (about their eight things) and post these rules.
At the end of your blog, you need to choose eight people to get tagged and list their names.

Now the nitty gritty:

1. Both my parents are psychology professors. Makes for an interesting childhood.

2. I was three years into my Biochem PhD when I found out I was pregnant. My major professor fired me when I told her and I didn't really care too much. It was a lot of hard work and late nights wasted, though.

3. I love, love, love fried okra. It has to be pan fried coated with cornmeal. The battered kind is good but just not the same.

4. I lived in England for a short time 20 years ago. I was in college there and I had a blast. I still miss the English breakfasts with a nice hot tea.... mmmm... fried egg, toast, beans, tomatoes, and rashers (bacon). OR some scones, clotted cream, and jam (but that is really a cream tea, not breakfast, exactly). Delish.

5. This summer I got to meet in person another preemie Mom that I met on a message board. It was great to get together face to face after talking for so long online. I also got to meet her little girl... absolutely gorgeous, precious little one. I'm going to try to rope them both into meeting us next summer at Sesame Place for a family outing. And this time I'll remember to take pictures... DOH!

6. I absolutely love old family names. William is named after both Grandfathers, his Dad, his Great Grandmother, and two of his Great Grandfathers. Margaret is named after both Grandmothers.

7. My husband and and I have only known each other for 4.5 years. I had sworn off dating right before I met him. Haha...

8. I'm three degrees of Kevin Bacon.

I tag these folks, if you have time (I tag more than eight. I dare you to stop me.):

Tiffany and ~K~... consider yourselves tagged.


PS... that pic is my Sis.

Friday, July 20, 2007

Okay, what is THIS about???

Margaret has a new habit. She makes herself throw up. I guess that she finds it interesting... I find it horrible though I try not to give it too much attention.

How does Margaret do it, you ask? She sticks her whole hand in her mouth, fingers fully extended. Gagging is usually followed by throwing up. If it isn't she wiggles her hand around until she gets the desired effect.

Sometimes I catch her in the act. Sometimes she leads me to the scene of the crime by pointing and saying "blaaaach". (she can do this in almost complete silence)

Has anyone ever heard of another toddler doing this? I know they are weird animals and are likely to do just about anything. But as hard as I work to get food INTO her, I hate to see her making it come out this way.

Wednesday, July 18, 2007

Walking is Overrated

When I first found out that William had a brain injury, I knew there was another Mom with a son in the NICU who had also just found out about her son's brain malformation. We met in the family waiting area one day, cried together, and shared hugs. It was nice to share stories and those grieving hugs were so comforting.

But there was something about the meeting that has been eating away at me since. When exchanging stories and the prognosis the doctors had given each of our sons, she acted like it was the end of the world when I said that the Neuro thought William might not walk independently. I had shared what I thought were much scarier facts like blindness, seizures, possible severe mental retardation but it was only when I mentioned the walking did she have a negative reaction.

I have been thinking about the average person's perceived importance of independent walking since that moment. I, too, used to have that same attitude. Walking was the yardstick by which I gauged a person's abilities. The truth is, I had never actually THOUGHT about it. But I have explored this topic extensively in the past few months. And, I have to say that now I think walking is overrated.

True, there are many obstacles when you can't walk. I think probably one of the hardest must be when you are a child and come to know that you just can't play in all the ways you want to. In general, however, I think that most obstacles are those that just shouldn't be... things that deal with accessibility.

Accessibility should be seamless. The disabled should be able to live, work, and move in this world seamlessly. And it appalls me that in many ways they can't. What even is more shameful is that I never, ever even gave this a second thought until this year. Like most other abled people, I imagine, I assumed that there were always parking spaces, wheelchair shopping carts, accessible playgrounds and entertainment, therapies, and equipment readily available to those who need it. How naive.

Do I still want William to walk? Of course. Do I still use that as a yardstick? Hell NO.

Friday, June 22, 2007

The post that took me three weeks to write

Seriously, I started this on June 22 and am now posting on July 13...

Things are going well here at Mom's. I think it is safe to say that the kids (esp. William) love their Grandma. My brother Jason has fallen for William while Margaret has captured the heart of my brother Nick (also a preemie). Of course, my Sis loves them both but I think a little girl is what she is after. Both babies have gotten to meet their paternal Granddad, Aunts and Uncles, Great Granny ("Big Granny"), Great Aunt Vicki, and Great Uncle Richard. There are lots of cuddles and kisses, holding, and gifts for both. Margaret even got to go on a boat trip with GU Richard and Big Granny! She looked so cute in her life jacket! She also had her first trip to the pool which was big fun!

Little Margaret has really blossomed this summer. She has started talking instead of pointing and grunting. And she is trying her best to run and jump. Lots of practice is needed, however. She is so much fun!

The name of her game, however, is mischief- catfood eating, potted plant digging, fireplace crawling, brother smacking, toilet paper eating mischief. She is certainly age appropriate and testing her limits. I will tell her "no" and she will continue to do whatever it is that she was doing, only more slowly and while keeping an eye on me. Sometimes it is really hard not to laugh. And then there is the food smearing. Food is meant to be worn, not eaten. She has taken to "running" whenever I say it is time to eat. I guess she isn't going to be plump any time soon.

William has finally started to calm a bit. I can now put him on his play gym and he will happily play for 10-15 minutes. Glorious for eating breakfast or prying Margaret off some dangerous object. He is sleeping through the night, too! This throws me off because Margaret didn't sleep through until she was 18 months or so. I don't know how much he weighs or his length but I can tell you that his head circumference has increased by 3.5 cm since his last neuro appointment. This is good news... just right. Not so much to imply hydrocephalus or too little to suggest microcephaly. William has also become more social with smiles and coos for everybody! He is so cute.

Motor wise, things remain static with William. Not much head control, has trouble getting hands to midline, nowhere close to working on sitting. He seems to be very hypotonic in his trunk and neck and very stiff in the legs and arms. Arms are a bit stiffer than his legs, even. I understand that his seizure med, Keppra (yeah, he was having seizures afterall), can have the side effect of muscle weakness so I don't know if that is contributing to his trunk/neck floppiness. His favorite thing to do is eat his fist and I want him to be able to do this on his own!!! He works so hard at it and my heart breaks when he cries in frustration because he just can't get his hand in there on his own.

I am also doing better. For those of you who don't know, I have been suffering a quite severe bout of Post Partum Depression with a little bit of Post Partum Anxiety Disorder thrown in to round things out. I had started seeing a Social Worker who immediately sent me to a Psychiatrist. Well, the "screening" and waiting list for an appointment was over two months long. So I am still waiting to get in. But I'm feeling better, meds are starting to work, and I am headed home soon.

BTW, as of two days ago, my actual age is 4-0. My adjusted age remains 28.

If you stuck around this long and are checking on us, thank you!!!

Tuesday, June 19, 2007

Saturday, June 09, 2007

Sunday, June 03, 2007

Fisher Price School Bus

In an attempt to keep Margaret from digging up the houseplants and eating the catfood here at Mom's, I set out yesterday to buy her a new toy. Initially, I had planned to purchase the FP Sweet Sounds Home because it has a Mommy, Daddy, and baby included. She has been very interested in all things baby lately. But when I went to the store, they had none! I poured over the toy isles and finally settled on the FP School Bus, patially due to the many pictures I have seen of Eden and Holland enjoying theirs'.

I expected Margaret to enjoy the bus as she does all the Little People things I have gotten her. What I did not expect was that the bus comes with a wheelchair! I was so excited when I extracted it from the box... (why does it take near-surgery to remove kid's toys from their boxes???)

We are now going on 18 hours mischief-free, so the bus is a hit. She has enjoyed pushing it around and adding riders from her other toys. Right now it is filled with a selection of plastic bugs (Dollar Tree). One of her favorites, a huge black spider is riding proudly in the wheelchair. This makes me so happy. It really is the little things that can be so important, isn't it?

Friday, June 01, 2007

No Time

Since my husband is taking long business trips this summer, he and I decided that it would be a good idea if I stayed with my Mom for the next month or so. The drive here was a grueling 13 hours- 10 of which were non-stop screaming by William. Margaret was so mesmorized by our new car DVD player that she didn't complain much. I did have to read a new Eric Carle book about a thousand times in a row and do some singing... very easy traveller.

William now will not let me put him down for anything. He must be held 24/7 so I have had no time to update but hopefully he will settle in soon to give me some time to update about the Monkeys.

Wednesday, May 16, 2007

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.

Tuesday, May 15, 2007

More Bad News

I swear, I'm just going to stop taking William to the doctor. It always seems like it is one kick in the gut after another.

I have known for a while that William's vision is not normal. But with all his swiping at toys and tracking things, I had started to get very hopeful that he had a lot of functional vision. Yesterday was William's second Ophtho appointment. It was very dissappointing. When the doctor's first question after her exam is, "Have you applied for SSI?", you just know what's coming next is no good.

His right optic disc now is appearing paler than it had before indicating optic nerve atrophy rather than hypoplasia. She didn't think it would get any worse but couldn't guarantee me that. She said that she approximates 20/400 vision with his better eye (the left) and quite a bit worse with his right. The doctor did not think that glasses would help much, if at all. Add initial signs of Cortical Vision Impairment and his visual prognosis is not promising.

So, he is officially considered legally blind now. I hate this.

Later today, I am going to post some good news!

Tuesday, May 08, 2007


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.

Thursday, May 03, 2007

Dang it

Just got a call from the Neuro and she says that William IS having seizures. We start the Phenobarbitol tonight.... :(

Sunday, April 29, 2007

Follow-up Follow-up

Why do I feel like shit after every meeting with a Neurologist? Seriously. It feels as though Dr. S has sucked my essence right out of my body. She was a new Neuro for us. Younger than Dr. Hippie from the NICU... probably about my age. She was pretty. She had hair that gets washed more than twice a week; eyes than have slept longer than three hours at a time this year. Her mouth was a black hole that espoused words I knew were coming but never wanted to hear. And then there were the bad surprises.

Things I knew were coming: William is showing spasticity in his legs. They are scissoring and are certainly affected by his brain injury. He is not attending the midline like he should be at his adjusted age and his head control is still not very good. His movements were described as "mirror movements"- his left and right sides move in unison. At this point he should be having more reciprocal movement.

Bad surprises: Dr. S thinks he is having seizures. William breathes very fast and yawns a lot. The doctor thinks that the yawning might actually be a form of seizure. Also, the worst news, William's head is not growing as fast as it should. Absolutely the last thing I wanted to hear. For those who do not know, poor head growth = poor brain growth and a poor prognosis for his cognitive abilities.

Diagnosis (for now): spasticity
Future testing: EEG on May 3, MRI on May 3

Not looking forward to that MRI. It will be his first. I'm not sure I really want to know what it will tell us.

Monday, April 23, 2007

I'll admit it

I am walking a fine line psychologically lately. I'm sure that it is partially due to exhaustion from my recent illness and the illnesses of my children. And then there is William's first Neurology follow-up on Friday morning looming out there. Certainly doesn't help.

Mostly, though, I think I am having a hard time finding balance these days. William's extreme need for holding, bouncing, rocking, singing has left me little time for my precious Margaret (or my husband or myself). I can see in Margaret's eyes how much she misses me and how sad she is sometimes when she wants to play/cuddle/just be with me but I can't because William is screaming his head off. I miss her so much. She has even started pushing me away now when I do have time to spend with her. She will whine and try to smack me until I leave her alone. Makes me so sad.

And William's appointment... Let me just say that I love William's (Margaret's) physical therapist. She has moved her schedule around so that she can go with us to the Neurologist on Friday. I know that this is a wonderful thing to have her want to be so involved with his therapies. But, honestly, it kind of scares me. Yes, I can tell that he has issues but it makes me wonder if he is very severe for the PT to care about coming so much. I am just going to hope that this is because she genuinely cares about us and not because she is super concerned about his future abilities.

Developmentally, William is doing okay for his age, I think. He does have tone issues. And his legs are already scissoring. But he can lift his head and chest up during tummy time without relying too much on his his high tone. He has started to swipe at toys when he is on his back. Lately, too, when he brushes his hands on something, he grabs (always misses) and brings his hands towards his mouth. One day a week or so ago, he actually got his thumb in his mouth (with some side lying help) and sucked it like mad. Ever since, he has been trying like crazy to get his fist to his mouth. His head control is still not the best but I'm wondering how much that has to do with his vision. When he is on his back, he tends to look to the right or left instead of holding his head at midline. He CAN do it, but I think that since his vision may not be the best, he doesn't have any motivation to hold that "hard" position.

Vision wise, he seems to have improved over the past couple of weeks. He doesn't whip his head around as much any more and he seems to be able to find my face some of the time now. I still have to make noises to get him to look for me, but he at least can see where I am. Every now and then, he will even look at my eyes.

Margaret floored me a few days ago when she walked across the room. She hasn't done anything close since... hopefully soon. I think that the antibiotics she is taking have made her feel not-so-hot and she has been a bit less active. When she gets better, I hope that she will be up to more walking. Her snail's pace has me always on the edge of my seat.

... I will add pictures later when I have a few more minutes to spare...

Monday, April 09, 2007

Fifteen Blankie Day

Margaret is a Blankie Girl. She doesn't have one particular blanket that she loves, rather she loves all Amy Coe flannel receiving blankets (sold at Target). She has about eight of them which is good because she likes to have a clean one whenever she has a nap or goes to bed. We keep them on a shelf under her changing table so that she can get a new one whenever she feels like it. On days when she is feeling bad, she will get two or three blankies and carry them around with her. I can usually tell how sick she is by how many blankies she has with her.

So last week, the plague started. Margaret was hit first and hit hard. She was the most miserable I have ever seen her although her only symptom at the time was a fever. Tuesday she came out of her room carrying a record seven blankies, a huge pile. For the rest of the week, she felt better but still not great. Her fever subsided and became nasal congestion and a nasty cough. Today, she is showing that her ears are hurting again. It is a four blankie day for her.

Mommy got the plague second. Same thing as with Margaret, a fever (102.5!) and achy all over. Now I've got a nagging cough and nasal congestion. The first couple of days, I felt worse than I have in a long, long time. But now I'm down to about four blankies.

Poor William is on his second or third day of the plague. He is having a hard time. Throwing up every feed and all his meds just makes him feel even worse. Add a terrible diaper rash and you just have a miserable little baby. I wish Margaret's blankies could make him feel better. He'd need about seven, I think.

I'll be so glad when this passes. Summer can't come fast enough.

Friday, April 06, 2007


After William's diagnosis, I was completely annihilated. There were several days that I had to give myself a pep talk every time I needed to do anything. My need to care for Margaret is what kept me functioning on any kind of level at all.

The day the Neurologist told us he had PVL, David and I had shown up at the NICU early. We knew that the ultrasound from the previous day had shown abnormalities in his white matter and I wanted to speak with the Neurologist in person about his diagnosis. I could see the surprise in the Neurologist's eyes when we walked in as she was preparing to examine William. The director of the NICU was also there; he had been the one I talked to the day before about William's ultrasound results.

The funny thing is that I can't remember a lot about what the Neurologist said. What do I remember? I remember crying. I remember my husband crying. I remember the look of sadness on the director's face (he is also a Neonatologist). I remember that the Neurologist was acting very nervous/uncomfortable. I remember the group of nurses quietly watching and listening to the scene in front of them. I remember there was another Mom with her baby in the pod with us at the time. Her baby was a tiny, tiny one and had been on the vent for a little while. She flashed me a concerned half smile that clearly said she was sorry about whatever it was that was going on. I remember hating her and her "perfect" baby. I wanted to scream at her. Then, thankfully, I remember William's nurse urging me to hold him after all was said and done.

Since that time I have been grieving the loss of my "normal" son. I know there are supposedly five stages of grief and I can say that now I'm firmly in the "bargaining" stage. It is different that I would have anticipated. No, I'm not making deals with God.

My experience is that I am weighing what would be "good" or "bad" as far as his outcome. And depending on my mood, the day, the second, things can get moved back and forth in my mind. In my mind I explore every iteration of his potential disability and try to decide if that is better or worse than the last scenario I thought up. It is enough to drive me crazy as there seems to be no limit to the outcomes I can imagine. I imagine that I can live with the "good" outcomes but not the "bad" (I know this isn't really the case, though). At this point my "good" scenario is spastic diplegia cerebral palsy, limited field of vision but okay acuity, cognitively okay. I've recently added "wheelchair" to the "okay side" in my brain. The cognitive outcome possibilities are where things get dicey for me.

In addition to this bargaining, I am also constantly on the lookout for "signs" that he is going to have problems with his legs, his arms, his vision. I wish that we hadn't found out about his PVL until he started falling behind... it would have been nice to have time to enjoy him without all this weighing on my mind.

Most of all, I just wish someone could tell me how much he is going to be affected by his brain injury. But no one can. Not even a best guess. And that drives me batty.

Sunday, April 01, 2007

Three Things

Three things have recently made a big impact in the life of my daughter. At least she thinks so...

First, we have Squiddo. I had been eyeing this toy for a little while and asked my husband to look at it when he went to the store last weekend. Yeah, he came home with it. I just think it is so cute! It is a neoprene "squid" with a zipper container as a mouth. Inside the mouth you store four "squid baby" train cars that hook together by magnets. Also included are tracks for the "train" and a rope/magnet device that you can use to pull the cars on the track.

Margaret LOVES Squiddo. She frequently carries him around and they have many adventures. He also gets lots of hugs and kisses. Sometimes in the evening when I am cleaning up, I'll hide him in a place that she is sure to look so that I can hear her squeal with delight when she finds him! The Squid is also good for tummy time for William. It is big and bright enought that it gets his attention and motivates him to lift his(giant)head. I love this toy.

Second, we have our new play pool. Margaret is a water girl. Bath, sink, rain, sprinklers are all causes of celebration and this pool has put her over the edge. She absolutely loves it, especially the squirt-y parts and the slide. I love watching her in it, playing until she shivers. And she still cries when we take her out. Yes, it is already summer here!

Third, is Margaret's new toddler bed. Since she doesn't sleep in her crib, we decided to take it down and get her a toddler bed. She doesn't know what to think of it yet. And I'm unsure about how to get her to sleep in it, but she certainly is enjoying climbing in and out.

Putting it together was big fun, too.