Please SIGN Petition for Preemies

Please sign the petition for Preemies. As a preemie mom I know how much it would help to find out why this is happening.

Sean when he was born:

http://www.marchofdimes.com/padpetition/index.aspx?a=1&z=1&c=1

Petition for Preemies
1. We urge the federal government to increase support for prematurity-related research and data collection as recommended by the Institute of Medicine and the Surgeon General’s Conference on the Prevention of Preterm Birth, to:
(a) identify the causes of premature birth;
(b) test strategies for prevention;
(c) improve the care, treatment and outcomes of preterm infants;
(d) and better define and track the problem of premature birth.
2. We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care.
3. We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines.
4. We call on businesses to create workplaces that support maternal and infant health.

Thanks

Sensory Integration Meltdown

So something has come over my little boy and I can not figure out the trigger point. This morning was a rough morning. Patrick and I went in his room to wake him up and get ready for the day. He immediately started screaming and crying which is not normal. He usually will stretch his arms and legs and start helping us take his pajamas off.

Today was way different. As we was screaming Patrick and I try to console him and he just started kicking, hitting, and hyperventilating because he was so upset. We tried everything to calm him down and nothing was working. Between the both of us we got his pajamas off and starting to change his diaper and he screamed NO DIAPER CHANGE. Some how some of his senses were off this morning.

It took us awhile but we got his new diaper on and eventually his clothes for the day. We then proceeded to try and put his shoes and socks on. His new shoes he loves we just got that LIGHT UP. He normally is upset if we take them off.

After he was completely dressed he got down off of his bed and ran to the bathroom where I was finishing getting ready to go to work and said I love you mommy and started to quiver. It melted my heart and I was ready to have a meltdown.

I don't know what triggered his emotions this morning. I know it is sensory related because this was not a temper tantrum it reflected nothing as his normal temper tantrums do. He has done this a few times at night before bed a couple of weeks ago.

I think it is sensory because it seemed he got upset with any type of touch or expected touch. He is normally would love a kiss and hug in the morning not this morning he kicked or hit when we tried. I am emotional mess today sitting at my desk trying to figure out what happened to my little boy this morning. I wish I knew how to prevent them from happening.

We started a journal writing down what he eats, when he sleeps, wakes up each day to try and find a trigger.

Yesterday he napped normally, had a play date which he loved, and actually ate dinner.

Eating dinner these days has been a challenge. Lately he would rather play and not eat. Thanks for stopping by.

I know there are a lot of unknowns about the brain but there are a lot of unknowns I have a lot of unknowns myself but I am trying to figure this all out. I know Sean's stroke affected his parietal lobe, frontal lobe, and temporal lobe because of the closed lip schizenphally.

Turning 29 Oh my

Turning 29........ and everyone keeps telling me that I need to live it up since it is my last year in the 20's. Tell me how to live it up?

So I guess that is a little over 29 words but what else is there to tell about being 29? What have you done and loved.

The Brain and its Lobes

The brain and there functions in way I can understand and make sense of what is going on with our little guy!

Ever since we have found out that Sean suffered a stroke, has a whole in his brain, is having seizures I have been trying to figure out what lobes are effected and what each lobes function is inside the brain. Here is what I have figured out after spending tons of time on the internet.

Sean’s stroke happened in the parietal lobe and this is what I was able to find out:

It is located above the occipital lobe and behind the frontal lobe. The parietal lobe integrates sensory information from the different senses, especially spatial sense and navigation. The parietal lobe plays important roles in integrating sensory information from various parts of the body. The parietal lobes can be divided into two regions one involves sensation and perception and the other is concerned with integrating sensory input. The first function integrates sensory information to form a single perception (cognition). The second function constructs a spatial coordinate system to represent the world around us. Individuals with damage to the parietal lobe often show striking deficits, such as abnormalities in body image and spatial relations.

And of course the best part is much less is known about this lobe than the other three in the cerebrum. Great thanks. I know that there is still so much to learn about the brain. But don’t researchers and doctors know that we need to know more about all lobes but I NEED to know more about this one. My unborn baby had a stroke and it affected this lobe (well it affected three lobes…but occurred in this lobe) Okay enough said above since there is not much out there on the parietal lobe.

Let’s move to the frontal lobe. The frontal lobe is located at the front of each cerebral hemisphere and is in front of the parietal lobe and above the temporal lobe. It is separated by the primary motor cortex from the parietal lobe. So this makes sense of why the frontal lobe is affected from the stroke. The function of the frontal lobe involves the ability to recognize future consequences resulting from current actions, to choose between good and bad actions….. aka behavior. The frontal lobe are considered our emotional control center and home to our personality. The frontal lobe are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement, impulse control, and social behavior. The frontal lobe are also thought to play a part in our spatial orientation, including our body's orientation in space. This makes sense since Sean has body space issues.

The last lobe affected by the stroke and everything else is the temporal lobe. This is also where Sean is having seizures at. The temporal lobe involves speech, memory, and hearing. It is highly associated with memory skills. Seizures of the temporal lobe can have dramatic effects on an individuals personality. Temporal lobe epilepsy can cause aggressive rages. Lets hope that this is not the case for Sean.

If anyone is interested in learning more I got most of my information from the following websites.

http://www.neuroskills.com/braininjury.shtml

http://upload.wikimedia.org/wikipedia/commons/9/9f/Brainlobes.svg

What is Schizencephaly

What is schizencephaly? I get asked this all of the time because it is something Sean has. There is not much out there of what it is, why it happens, and everywhere I read it says that it is rare.

Here is the national institute of Neurological Disorders and Strokes definition:

Schizencephaly is an extremely rare developmental birth defect characterized by abnormal slits, or clefts, in the cerebral hemispheres of the brain. Babies with clefts in both hemispheres (called bilateral clefts) commonly have developmental delays, delays in speech and language skills, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere (called unilateral clefts) are often paralyzed on one side of the body, but may have average to near-average intelligence. Individuals with schizencephaly may also have an abnormally small head, mental retardation, partial or complete paralysis, or poor muscle tone. Most will experience seizures. Some individuals may have an excessive accumulation of fluid in the brain called hydrocephalus.

My definition is of what Sean has is called closed lip schizencephaly. Basically he has an area of his brain that is not connected. The best way to describe it so everyone who understand is that he has a whole in his brain. The neurologist thinks because of the closed lip schizencephaly which means Sean's brain did not develop correctly during brain development may have been the reason Sean suffered chronic ischemic strokes while in utero.

Sean is suffering seizures he is having complex partial seizures and is currently on medication and the closed lip schizencephaly is affecting not only the parietal lobe where the stroke happened but the frontal lobe, and the temporal lobe too. He also has poor muscle tone, and goes to tons of therapy.

10 things to catch up

Well we have been super busy lately and I feel I have so much to catch up so I am going to talk about 10 different things that are new.

1. Neuro visit yesterday went pretty well. He thinks Sean has sensory integration (sp) issues and we are going to start DT to help with behavioral and social skills. Cognitively he is ahead of where he should be:) So my little guy is VERY SMART:)

2. Sean can count to 3 in Spanish uno dos tres not only is he smart but bilingual. He counted the three little bears in Good Night Moon

3. We got to meet Sarah and Avery and Amanda and Leah this past Sunday. They are both so cute and amazing. We got to meet the daddies too.

Avery, Leah, and Sean at the stroke picnic

4. Sean had his 2.5 year old check up and is 36 inches and 35 lbs, big boy for a former preemie

5. Sean jumped and played hopscotch tonight

6. We went and spent the day out with Thomas not to long ago and Sean loved it. He got to ride on the Thomas train and get a PERCY and THOMAS tattoo

7. Sean's favorite book right now is From Head to Toe and acting out all of the actions

8. Sean was so tired tonight he was falling asleep during dinner but still wanted to play with Thomas instead of going to sleep.

9. Sean is finally warming up to Vitus and interacting with him better

10. My body hurts from working out the last couple of days. So at least I know I used some new muscles:)

Sean decided to give Avery a hug

TheraTogs, Ortho Inserts, and Sensory Brushes

So we had Sean's reassessment meeting last night. He is doing rather well he is still a few months behind in most areas and mostly because of the right sided hemi. cp. and his low muscle tone and strength in his hips and stomach. He is also in toeing still with his right side and is fisting a lot while doing harder things again.

So Sean is going to start to where theratogs 24 hours a day when we get them. We won't get them for a month or so because it goes through EI to order them. It will be interesting to see how he is while we try and put him in this. Here is a picture and a link to there website.

http://www.theratogs.com/AtaxiTog.aspx

Enhances proprioceptive input by automatically providing joint compression through the torso and hips.

Adds postural and hip stability without strapping.

Simplifies the TheraTogs donning and doffing process for patients who only need to address issues of stability, balance, and staggering gait caused by ataxia.

We also need to address his sensory issues and we are starting the sensory therapressure brushing idea with deep brushing of arms, legs, hands, back, feet.

And last but not least we have flat feet and in toeing so we need to put in

orthopedic inserts basically these big blue things in his shoes. I don't have a picture of them and can not remember what brand they are ordering him but then we need to go to stride rite and by him a new pair of shoes. Hopefully we will find some that fit with the inserts because he already is wearing an extra wide shoe.

Tonight a developmental therapist is coming to verify and reassess Sean to make sure they did not miss anything. Wish us luck with accomplishing that. Sean has been a typical two year old these days with lots of No's, mine's, and no mommy or daddy you bad. Not sure where he got that from because we don't say you bad. We say we don't do that we play nice. 2 years can't live with them but can't live with out them either.