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.

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!

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!

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!

This looks very interesting

Including Samuel

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!

Look at me!

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

Pajama Time

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 .)

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.

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.

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.

Just Some Pictures of My Sweeties

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

Ready to Get Angry?

Read this story about a family who was sold a lemon!


And if you like, put this link in your blog, too.

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.

Cerebral Palsy

We have the diagnosis. I will update more later.

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.)

Wordless Wednesday... it is Wednesday, right?