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A New Monkey

Updated: 2018-03-06T01:13:06.809-05:00


I love days like these



You know how it is when you have a kid with CP (or any other developmental delay)... you wait and wait (and work them) seemingly endlessly for them to progress. And then, just when you least expect it, things start to click and they make a step forward. With my son, it has been months since I have seen much progress at all. Sure, his head control and trunk strength has improved gradually. But seeing him do something "new"? Well, it has been a long, long time.

However, lately I have seen my boy do things I never thought he'd do again. Tonight he rolled over from his right side to his left. On purpose. Then he grabbed an electrical cord (yes, I let him do it... not plugged in) and lifted it high in the air. He worked like hell to get it in his mouth... like 15 minutes on this one task. Smacking his lips, sticking out his tongue, moving in ways I haven't seen since before the stroke. Now, he is working on rolling over again.

Yesterday morning when I got him out of bed, I neglected to sing his "Good Morning" song to him. When I put him on his changing table, he said "goouh" to me. Clearly, wanting his usual song. Lots of big smiles all around when I complied. I haven't heard a hard "g" sound since last spring. He is babbling more than he ever has. Stroke or not.

And today, he did so well in PT they brought out the cameras!

I'm just so proud of my little man. What a joy to get to be his Mommy and what a fabulous Mother's Day gift he has given me this week!

The future is now


So, when William was first diagnosed with PVL at 4 weeks old, his neurologist told me he would likely have seizures. And then after his stroke, I knew that the likelihood was even greater. Well, yep, my Man had his first known seizure last Friday. It was very short but those couple of minutes were like an eternity. I was so terrified that it wouldn't stop and he would end up in the hospital again.

But it did stop and I took him to the ER. They observed for several hours and took blood samples. Then we were sent on our way. Thank goodness.

Mister has been in a really great mood since then (crazy, I know). And his very much increased dose of Keppra (he was on a "preventative" low dose before) has decreased his retching significantly.

I'm hoping to do a good update on us all soon. Things are going well with much progress being made since his stroke.

Another Giant Step Forward


Wednesday William made another giant step forward in his recovery from the stroke. He passed a swallow study! He was able to swallow pudding and honey thicknesses with no issue and penetrated 1 out of three times with nectar.

So, for now, we are calling him safe to eat very thick foods. He is going to enjoy being able to eat chocolate pudding... the boy loves his chocolate!

We will schedule another swallow study in 4-6 more months and hope that his ability to swallow thinner liquids will have improved. I don't think we are going to get rid of his GJ tube any time soon but it will be fun for him to practice eating again!

The short version


There is no perfect way to start this all up again so I will just start with the unexpected turn that came our way this past July.On July 29, we were still all unpacking from a week trip to the beach. I was taking the time while the kids slept in to clean the house a bit. But about 9:15 am, I realized that William was sleeping too long and I needed to get him up and get dressed for therapy. So, I went into his room singing his special wake up song but when I approached his crib, I noticed he was in an unusual position... and that he was surrounded by a huge pool of liquid. When I picked him up, he was completely ragdoll limp and I saw that he had severe nystagmus in both eyes. As I carried him into the better lighting of the den, I could tell that he was off color and couldn't tell if he was breathing. But he was hot. Really, really hot.I prepared to take him to the ER but realized that the situation was too serious for me to drive him. So I called 911. I am surprised that the operator could get any information from me at all. Because as I type this calmly, I was completely panicked at the time. there are no words to adequately describe the fear, panic, grief I was feeling holding my son.When the ambulance arrived, I had Margaret meet them at the door and let them in. The EMTs took one look at William (didn't even put their bags down) and scooped him up out of my arms and immediately took him to the ambulance to start medical treatment.At the time it was looking as if William had suffered a seizure. While at the ER and after the docs had given him some anti-seizure meds, William went into respiratory arrest. He was intubated and paralyzed. They ran a CT scan on his brain but found no bleeds or trauma so everyone's best guess was a seizure brought on by a fever due to a viral infection.William was admitted into the PICU and remained intubated for a few days. On Margaret's birthday, August 1, he was extubated but remained in a comatose state. And then. He started to have trouble maintaining his sats. And breathing. And his heart rate. My husband and I stood by his bedside and cheered for him everytime he took a breath. At the time we just didn't want him to be intubated again. We had no idea how sick he really was.So, he started breathing again and things stabilized. Until he started showing some ominous neurological signs. His nystagmus returned but was clearly only in one direction (to his right). And even though he had been off all sedatives and most pain meds for a couple of days, he did not wake up. That is when he had a second EEG ordered and following the results another CT scan of his brain.The CT scan showed that William's right hemisphere had sustained a huge ischemic event and was swollen accross the midline of his brain. William was quickly re-intubated. And that is when the parade of specialists started. Neurology, neurosurgery, hematology/oncology, cardiology, gastroenterology, plastic surgery, pulmonology, genetics, regular 'ole pediatric surgery, etc. MRIs of all kinds on most of his organs and major blood vessels. CT scans of his brain every day for two weeks.He had a Nissen and G tube placed following a failed swallow study. His surgical site became infected and he nearly died from that. His stomach completely shut down following his exploritory surgery (to find the infection) so he had to have the G-tube removed and replaced by a G-J tube. He is completely j-tube fed.William spent 55 days in the PICU. Five days on the regular peds floor. And three weeks in a Rehabilitation Center.What caused it all? A stroke. A massive stroke that, I am told, would have killed most people instantly. The ironic thing is that William's PVL saved his life, most likely. Because William had extra "room" in his brain, it was able to swell so much without killing him. From what I am told, the stroke affected his entire right hemisphere- that none of it was spared the damage. Knowing that, he does show [...]

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.



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


(image) I left the room for two minutes, tops.

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

(image) Kitty Litter is FUN!

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

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

(image) Caught!!

(image) 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 s[...]

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.


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!

(image) 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!

(image) 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[...]

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 [...]