Metamorphosis Monday

So I saw Betsy's link over at My Five Men to a post called Metamorphosis Monday. I figured I would participate and what better transformation to share then that of Holly's Room.

Once upon a time this room was my Office.

It wasn't used very much, and soon became the place where we put things. It didn;t actually get this bad until after I was pregnant and trying to make space. We filled and cleaned out the room "working" on the rest of the house probably 3 times during my pregnancy.

Here is is just before my dad came to visit me in January of 2008. I was having a Baby shower in a few weeks, working full time and had to get it emptied so he could paint it and we could set it all up before the party.

This is the after photo The Blue Armoir used to be in our bedroom, but was perfect for the baby room and all of her supplies. My dad did the painting and we did the decorating.

The new blinds add an earthy tone, the concept is Ocean and Forest. The ceiling is light blue with clouds for the sky, the Blue is water and the green is forest, and the brown are the trees and reefs. We got the cool wall art from a place called Blik it is, they are removable.

The tree is my favorite part. We actually Added Holly's name above her crib and a few more hanging animals behind the door since this picture was taken. Those little cubbies used to be for Joel's music supplies and are now filled with Holly's books.

We love her room, and she is just now finally playing in there, she crawls over from the living room where we spend most of the day, will take books off of her shef and flip through them. I am sure as she grows it will transform some more, but we were quite happy with this metamorphosis.

Oh?

"Oh?"
Originally uploaded by vczdavis

Saw this on Photo mommy's Page.

All About Me and My 1st Baby Meme - those fun details about my pregnancy and 1st delivery.

1. Were you married at the time? Yes, 9 and 1/2 years, together almost 15.

2. What were your reactions when you found out you were pregnant? Super excited, In awe, amazed.

3. How old were you? 32

4. How did you find out you were pregnant? Took a test, 3 times, I thought I got my period 17 days prior, but then started to feel nauseous. it was all very confusing.

5. Who did you tell first? Joel, called him into the bathroom, he was sleeping and didn't want to get up. he had no idea I was taking the test. Then I took a picture, and kept it a secret for a few weeks until after the first ultrasound at 9 weeks. Then emailed the pictures of both to my mom and joel's mom.

6. Did you want to find out the sex? Yes, I could not wait to find out, but I was sure it was a girl.

7. Due date: March 1st 2008, but technically she was due on Leap Day, but the day after the 28th on the chart was the 1st, in reality the day after was the 29th (leap day)

8. Did you deliver early or late? 11 days late, I was so happy about that, since I worked until my due date, and then the next week I got to lounge around the house on my leave, until she came.

9. Did you have morning sickness? I did not vomit once. I felt nauseous a few times in the beginning but then started eating something every 2 hours and was fine.

10. What did you crave? Every few weeks I would crave something. I just had to have that thing, but each time it was something different. I also craved and missed fruit during the 2nd half.

11. Who irritated you the most? No one really, I don't think.

12. What was your first child's sex? Female

13. How many pounds did you gain throughout the pregnancy? For the first 7 months I gained no weight. During the last 2 I gained 17 lbs, almost all during the last month.

14. Did you have any complications during your pregnancy? I had gestational diabetes. This was hard later when I was craving fruit all the time. and there was too much sugar.

15. Where did you give birth? Alta Bates Medical Center, Berkeley, CA

16. How many hours were you in labor? 67, and I was in Triage 3 times the week before for various reasons.

17. Who drove you to the hospital? Joel, after 2 days of labor starting on a Saturday we went to the OB on Monday Morning. I was three centimeter's finally. So he said to go to the Hospital even though my contractions weren't at 4.1.1 Instead of going right to the hospital we went home to get all my stuff.

18. Who watched? Joel, both of our families live in Florida, and my sister is in the peace corps.

19. Was it vaginal or c-section? C-Section, After taking Pitocin for several hours, I never progressed passed 5 centimeters, The Dr. said c-section at 11:00 PM Monday, but I wasn't prepared, he said he would give me one more hour, so she ended up being born at 1:13 am Tuesday morning.

20. Did you take medicine to ease the pain? Yes, Epidural to start, after 50 hours of labor, I was ready. Plus with the Pitocin the contractions are pretty bad. Then with the c-section I had no choice.

21. How much did your child weigh? 8 lbs

22. What did you name him/her? Holly Zamira

23. How old is your first born today? 7 months on Saturday

I've Been Tagged

I would like to thank beth @ Fragile What?! for tagging me with this meme.

The Rules:

1. Link your tagger and list these rules on your blog.

2. Share 7 facts about yourself on your blog. Some random, some weird.

3. Tag 7 people at the end of your post by leaving their names as well as linking to their blogs.

4. Let them know they are tagged by leaving a comment on their blog.

Seven facts about me:

1. My dad is a retired Illusionist, who now does Pyrotechnics, Snow, and other Special Effects. We grew up traveling around on Tour and he did stage magic all over. Later he was on tour with Kiss doing their Concert Fireworks, and then started his own effects company: http://www.effectspecialist.com/ Here is my Mom Levitating

2. When I was little (pictured to the left) I lived with my Parents, Grandparents, and a troupe of 12 midgets that traveled around and preformed, they came to the US escaping from Austria for the 1939 World’s Fair. They also Appeared in the Court Jester with Danny Kay on Wikipedia Here, The Wizard of Oz, and in the 70's several times on Saturday Night Live. They were all like my grandparents, and lived with my family until they passed, away. Only my Grandmother is now left, who prior to Marrying into my grandfather's show business act (Hermines Midgets), was herself on center stage in Ringling Brother's hanging by her teeth doing acrobatics 20 feet up, balanced on a pole on someone's forehead. Here is a Video clip from the Midget's in The Court Jester.

3. Because of my family businesses we travelled and moved a lot growing up, and in 12 years of Primary Education, I attended 13 different schools. Here is a Picture of me as a Baby, Doesn;t Holly look just like me??

4. I have an BA in English Creative Writing, and a BA in Broadcast Communication, Yet somehow (I think my hubbys influence) I ended up in a job doing Educational Technology, so I earned a MS in Education with a focus in Online teaching and Learning.

5. I met my Hubby Joel in October 1993, My first Semester at College; we started dating on November 17th. 4 Years later on 11/17/97 he asked me to Marry Him. One year later we moved to California when Joel got a job here, from Florida in August, but returned to Florida, in November, on 11/17/08 (a Tuesday) and we got married, the wedding and reception was at a place "Kapok Gardens" that looked like the renaissance, with aqueducts and beautiful gardens, but they were closing down, and it was technically a Guitar Center, as they had already moved in and opened the store in 1/2 of the building. My dress matched the look, as it was a replica of the dress Drew Barrymore wore in Ever After to the Ball, sans wings, made by my dad's costume designer and seamstress, we only had to pay for the materials. Joel and I will be celebrating 10 years Married and 15 together, this year 11/17/08, and we are both just 33. (We have almost been together 1/2 of our lives.) Holly is our first baby.

6. When I was in High School I was totally into Hair Metal Bands, and Punk Rock. When I went to College, I loved the Grateful Dead, and went to several shows in the South East. I wanted to be a DJ but the San Francisco Radio market was too difficult to break into. I was an Online Radio DJ for like 2 years.

7. I have written 2 1/2 Novels, 1 Screen Play, a Memoir and Several short scripts and stories. I Script is in the Horror Genre, and I sent it to several production companies, I have a file of Rejection letters that I keep with pride from paramount, DreamWorks, John Carpenter’s Studio, and Many more. I actually did speak with two producers; one was working on a similar film with Wes Craven, so passed on mine. I plan to get back to writing while I am home with Holly, and turn my 2.5 Novels into 1 good novel. I try and participate in nanowrimo each year, this year is my 4th.

Are you up for being exposed?!?!

So here are my nominee's for Taggage:

1. And then there were two..

2. Just a Bunch of Nothin

3. The Other Lion

4. It's all About Potential

5. The X Mom

6. fragile mom

7. Sunny Day

Some of you have already been Nominated but haven’t posted yet, so I thought I would Nominate you again. If you have done this in the recent past just leave a link to it and please don’t feel obligated to participate, because I know not everybody likes doing these things. But if you feel inclined, have fun with it! I look forward to seeing your posts!

Holly & Minocycline @ UC Davis Mind

http://www.flickr.com/photos/vczdavis/2917330565/
Originally uploaded by vczdavis

Holly was the first baby to take Minocycline. She began on 7-17-08 and ended on 8-19-08. Many have been interested in the recent research on this and the trial they are launching. If you read the August Archives of this blog, you will see my journal during the Minocycline trial. Another Mother Asked me some questions which I will post and answer here:

QUESTIONS:

I had a couple of questions about the medication, and if you're comfortable with me asking, was it the minocycline that you were using? Was the trial for a month only, and how would the progress be measured? Was your daughter hitting the regular developmental measurements before this drug trial, or were there very noticable delays?

Forgive me for being so inquisitive, but I am just so eager for this medication to be available for the next phase of trials. Our son would benefit so much from having some medication that would improve his memory/synapses.

I guess all of us on the listserve are in the same boat, just praying for a cure that would set our kids free to be fuller participants in life.

Thanks

ANSWERS:

Holly is my first baby, so to be honest, if I had not already known she had fragile x I may not have known she was delayed. She is however receiving early intervention services, and according to the reports, on the 6 categories they monitor, she is on target for social, about 2 weeks delayed in Self Help, about 1 month in cognitive, 6 weeks in fine & Gross Motor, and 2 months in Speech.

That said, she does move forward and make progress, but does not hit the miles stones right on time. She tends to learn in bursts, and may fall very far behind, 6-9 weeks, then suddenly catch up, as if there was one single skill she was stuck with and she finally got it. Things like finding her feet, or chewing on them, reaching and grasping toys are delayed. She did just learn to sit on her own, but she does not push up when on her belly or roll onto her belly. She also doesn't really babble, at almost 7 months, but today she said maba maba bababa so I will be posting that she in babbling. She isn't hitting two toys together or shaking/rattling things, but she can hold her own bottle, smiles watches you.

So again, her OT/PT/IDS know she is delayed and work with her weekly, and there are some things I notice other babies doing that she does not, but as a first time mom, because she does learn new things weekly, I may never had known.



Now onto how they test it all.....

Since the drug trial (minocycline) that we did with Dr. Hagerman was sorta a trial run to help develop a study and not part of an official study, it might be different for you. But we used two things to test it. The first was the Mullins assessment, which is a diagnostic test where they play with her, give her different objects, see where her skills are, like will she pull a cloth or string to get to a toy, if you put the toy under the blanket does she know it is there, does she transfer the toy from one hand to another. They did this before the 5 week trial and then again after.

The second item is an eye tracking test, actually 7 of them, where she watches short videos and the computer analyzes where she is looking, does she look at the face, if you play music then show a picture on the left, then right, then left, will she anticipate the correct side when the music is played again, can she see the vibrations of black
and white lines in 4 boxes and notice which one is a different pattern, those types of things. Again they did this before and after.

Also direct observation by Dr. Hagerman, and the journal I kept of her progress and my observations. In Holly's case I noticed an increase in attention, concentration, and focus, I noticed her verbal skills seemed to increase. But here is the catch...

Was this because of the minocycline? Was it because of her therapy? Was it normal growth and development from 4-5 months of age, we don't know the answer to this. The lab analyzes the eye tracking data and sees a big improvement, but until they have a control group of normally developing non fragile x babies to compare to, they won't know if her improvement is typical, or a typical, or where she was in comparison to other children, normally developing, or with fragile x, on the medication, or off of it. So really there needs to be data collected from three groups, and all of it looked at.

That said, there are really no side affects, (except during development, it can cause your adult teeth to come in grey) so we felt like there could be no harm in taking this. She was young and at an age when her synapse connections are forming, so the thought was that they would form "correctly" or at least have a better chance if taking it.

The reason we did one month (it was supposed to be 4 weeks, but we added a 5th because the first week was a smaller dose and she spit or puked most of it out), is because the mouse trial was one month, and eight months later, positive results were still shown in the mouse. After the trial ended there was no loss of skill or regression that we could tell, and its hard to say, but I do not think her gain of new skill has slowed at all, so I think the positive effects are still there, but again, there are many factors contributing to her development. Holly was the first Fragile X patient to take Minocycline, so it was all in development, and theories, and trial and error.

It is possible she might take another course of the medication, especially I think if her delays increase or her development slows, to see if it has an effect, and when she turns 10 months, she will do another eye tracking test to see how she has progressed, over 5 more months.

I hope that helps. I think I will post this responce to my blog in case other's have these same Questions.

Upside Down

Upside Down
Originally uploaded by vczdavis

Here is an article about the Trial medication Holly was on.

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UCR Researchers Propose Minocycline as a Promising Drug for Patients with Fragile X Syndrome
Study leader Iryna Ethell awarded FRAXA Breakthrough Award for 2008
(October 3, 2008)

Print Quality Image: Right click image and select "Save Target As." UC Riverside research team involved in the Fragile-X project with minocycline. First row (left to right): Iryna Ethell, Tina Bilousova; second row (L to R): Jennifer Aye, Douglas Ethell, Lorraine Dansie, Jonathan Charles (Michelle Ngo, not shown). Iryna Ethell is holding the Breakthrough Award of the Year awarded to her by The FRAXA Research Foundation. Photo credit: Ethell lab, UC Riverside.

RIVERSIDE, Calif. – A UC Riverside-led team of biomedical scientists has found that a readily available drug called minocycline, used widely to treat acne and skin infections, can be used to treat Fragile X syndrome, the most common inherited cause of mental impairment and the most common cause of autism.

The study's findings have already impacted future therapies, with the approval of a new clinical trial in Toronto , Canada , that will test minocycline in patients with Fragile X.

Neurons in the brain communicate with each other at specialized contact sites called synapses, with many of these synapses occurring on small mushroom-shaped structures called dendritic spines.

During early development dendritic spines have immature finger-like shapes. But learning stabilizes the synapses and dendritic spines take on a mature mushroom shape, which make them more efficient.

The brains of patients with Fragile X syndrome have an overabundance of immature dendritic spines.

In their report, the researchers, led by Iryna Ethell and Douglas Ethell, faculty members in UCR's Division of Biomedical Sciences, describe how dendritic spine development in mice with Fragile X is delayed by enzymes called matrix metalloproteinases (MMPs), which are involved in normal brain development and physiological processes. They report that high levels of certain MMPs keep the synapses immature and inefficient.

But minocycline, they found, reduces these MMP levels in the mice, allowing the synapses to mature and make more efficient contacts between neurons in the brain. The outcome: corrected brain abnormalities in dendritic spines, reduced anxiety and improved cognitive function.

Study results appear online, ahead of print, in the Journal of Medical Genetics.

In their experiments, the Ethells found that young Fragile X mice treated with minocycline showed an increase of dendritic spine maturation in the hippocampus, a brain area that is critical for learning and memory. Besides less anxiety, minocycline-treated mice showed better exploration skills as compared to untreated mice.

The Ethells are enthusiastic about how their discovery already is leading to a clinical trial.

"Clinical studies often quickly follow such basic science because once there is a solid understanding of how problems arise, it is much easier to come up with solutions," said Iryna Ethell, an associate professor of biomedical sciences.

The study was funded by a grant from the FRAXA Research Foundation. FRAXA was founded in 1994 by three parents of children with Fragile X to support scientific research aimed at finding a treatment and a cure for Fragile X.

Dr. Michael Tranfaglia, FRAXA's chief scientific officer, said of the UCR researchers, "This group has done something unique and incredibly valuable: They have identified an off-the-shelf treatment for Fragile X through their basic research. By bringing their unique perspective to Fragile X research, they have helped us to understand why neurons are malformed in this disorder, and more importantly, how we can treat it.

"We were so impressed with their work that we just awarded Dr. Iryna Ethell the FRAXA Breakthrough Award for 2008. This is easily the most important scientific breakthrough in the Fragile X field in many years."

According to Dr. Carl Paribello, president of Fragile X Research Foundation of Canada and the director of the clinical trial (scheduled for early 2009) at Surrey Place Centre Fragile X Clinic in Toronto, Canada, the UCR-led study "will go a long way towards dispelling the idea that mental impairment cannot be treated."

"The work could lead to the first treatment that actually targets the underlying defect in Fragile X syndrome and not just the symptoms," Dr. Paribello said.

UCR's Douglas Ethell, an assistant professor of biomedical sciences, noted that effective therapies for Fragile X syndrome are few and far between. "This is a good time for identifying highly effective therapeutic strategies that might work in Fragile X patients," he said. "We are excited that our research has the potential to affect many lives."

Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups. About 1 in 259 women carry Fragile X and could pass it to their children. About 1 in 800 men carry Fragile X; their daughters will also be carriers.

Minocycline belongs to a group of antibiotics that has been used in people for more than fifty years to treat Lyme disease, acne, and other skin infections.

Minocycline may have beneficial effects in other disorders where higher-than-normal brain levels of MMP-9 are found. It is currently under study for treating rheumatoid arthritis, multiple sclerosis (MS), Parkinson's disease, and several other neurodegenerative conditions.

"In the future, new compounds that more specifically target MMP-9 can be developed and tested," Douglas Ethell said.

Next in their research, the Ethells and their colleagues plan to refine the therapeutic strategy in Fragile X mice to determine the optimal age, if any, to administer minocycline. They will also explore other MMP inhibitors that may be more effective than minocycline.

"We will investigate whether a combination of MMP inhibitors with other drugs, such as fenobam, can help mature the synapses in Fragile X mice," Iryna Ethell said.

The Ethells were joined in the research by UCR's Tina Bilousova, Lorraine Dansie, Michelle Ngo, Jennifer Aye, Jonathan R. Charles, all of whom are in the Division of Biomedical Sciences and Neuroscience Program.

UCR's Office of Technology Commercialization has applied for a patent on the discovery by the Ethells and their collaborators, with an interest in finding partners to accelerate development of treatments for Fragile X syndrome and other forms of mental retardation and autism.

Pj's

Pj's
Originally uploaded by vczdavis

Holly Yawn's (Double Take)

I can not believe how big Holly has gotten. She certainly has a mind of her own. Sometimes when she gets tired she goes off into her own world and is fixated on a little detail. While Mommy can distract her by being quite silly, she won't be deterred.

Holly 6 months

http://www.youtube.com/watch?v=a2hZHi4_t1c

In this video, you can see her cute little yawn, she is in her PJ's and ready for bed, but some toy has caught her eye, and she simply must pay attention to it.

Holly 1 month

http://www.youtube.com/watch?v=-WKPeqSJJyI

This video shows how much Holly has grown and change since she was 1 month old, short and sweet, you can see her yawn, and what a little baby, my big girl once was.

6 months old

6 months old
Originally uploaded by vczdavis

On Thursday September 11th at 1:13 AM Holly turned 6 months old! I am shocked and amazed at how much time has gone by, she is so big now, she has such a little personality, and really isn't a baby but a little person. She isn't crawling or walking, but wants to be mobile, she is just starting to sit on her own, but has sat supported for quite a while. She loves to lunge and grab things, she is thoughtful, and moves with intent, she can drink and hold her own bottle, but sometimes needs help staying focused, as she loves to chew on the nipple. She has two little teeth (fangs) and her favorite past time is chewing on things. She smiles, and Laughs, and she babbles to herself. She makes new and different sounds all the time. She likes her pacifier, but doesn't have to have it.

She chews on her fingers and toes. She doesn't like stretching her arms or bearing to much weight on them yet, but when she wants something she certainly can reach for it. She is quite proud of herself when she gets something she wants (like Daddy's Glasses) and can be verocious, when she is using those fangs. She likes to sleep on her side, and cuddles her blanket. She almost always sleeps through the night (except when she is sick) usually waking around 5-6 if she fell asleep by 8:00, but later if she was up late. She usually takes two naps during the day, and can be rested after 20 minutes, but sometimes will sleep 2-3 hours after a long day.

She can roll off of her tummy onto her back, but sees no usefulness in rolling onto her tummy yet, as that is not her favorite position. She reaches and twists and turns. She has bopped her head twice learning to sit. She has been in daycare for 2 weeks now, and loves to watch other babies, she has had her first fever, and her first earache. She knows her mommy, and smiles when she sees me. She has favorite toys, and shows preference for which she wants to chew on. She loves to read, she loves to dance and sing, she is starting to get distracted if the TV is on. She loves her bouncer, and still likes to nap in her swing. She is 14 1/2 lbs, and just over 25 inches. She is growing out of her 6-9 month onezies already, because she is long wasted. She has more cloths then any child could ever need, but always looks amazingly cute, and wears every outfit at least once.

Her ears have been pierced almost 2 months, she likes to go to swim class, and doesn't mind getting water in her face. She has learned to entertain herself, at least for a few minutes. She communicates and lets us know what she wants and is engaged. She tries to get my attention if I am busy and not focused on her. She has met 2 Great Grandmothers, 3 Grandmothers, and 1 Grandfather. She has fun playing with her PT and her OT/IDS, except when they make her work too hard, or after a long day. She loves getting baby massages, and taking baths, and has tickley spots on her chest, legs and neck. She has dark brown eyes, and red highlights in her brown hair. She loves to go on walks, and is very curious, absorbing everything. She can blow little raspberries and sticks her tongue out at mommy. She likes the little baby in the mirror. She is my little holly and she is 6 months old!

Hanging out on the chair

Hanging out on the chair
Originally uploaded by vczdavis

This is Holly's Second Visit to the Mind institute. New research has indicated that a drug called minocycline may have a positive effect on Fragile X. Dr. Hagerman proposed a 1 month trial with Holly.

Basically Holly had a clinical visit, then met with the baby Research team, for several eye tracking tests. She also performed the Mullins and Vineland Assessments to give us a baseline of development. Holly would then take the medication for 4 weeks and repeate the tests.

In the Fragile X Knockout Mice, the positive effects were seen over 8 months later. Side effects could include a graying of her teeth, but it was likely that her adult teeth would not begin to calcify until Holly was 6 months old, so this was the perfect window of opportunity.

Holly would be the first Fragile X baby to try this treatment.

As part of the study, Mom was asked to keep a daily journal, which I will be posting here. I have enjoyed writing these so much, I will continue to do so.

Smiling Eyes

Smiling Eyes
Originally uploaded by vczdavis

Holly was born with a genetic disorder called Fragile X.

http://www.nfxf.org/html/what.htm

http://en.wikipedia.org/wiki/Fragile_X_syndrome

During her pregnancy, Mommy found out she was a carrier, and after an amniocyntisis, Mommy and Daddy found out that holly had a full mutation. This is a spectrum disorder and delays can be mild to severe, but are typically reduced in females.

On July 3rd Holly had her first visit to the UC Davis Mind Institute where she was seen by Dr. Randi Hagerman, a renowned researcher of Fragile X.

http://healthsystem.ucdavis.edu/mindinstitute/ourteam/faculty_staff/rhagerman.html

Holly is also recieving early intervention services which include PT for High Tone in her hips and arms, and an OT / IDS.

Holly has show only slight delays and on occasion has a burst of new skill that advance her past her developmental age. it seems there are some things that tend to get her stuck, then once she gets that skill several associated skills all come at once.

This picture is from the day before we went to Davis to meet Dr. Hagerman.

Look @ my New Outfit!

http://www.flickr.com/photos/vczdavis/2432183373/
Originally uploaded by vczdavis

When Holly was about 5 weeks Old her Oma Lisa and great Grandma Pat came to visit.

Holly was able to meet her Opa Steve when he came with Oma right after the 4th of July. Then her Granny and Great Granny came to visit in August.

Holly Zamira

Holly Zamira
Originally uploaded by vczdavis

Holly and Mom were released from the hospital after 6 days. Holly's Granny Jackie and Nanna Mary were visiting just after her birth and for the first 2 weeks of her life.

Holly Zamira and Daddy

Holly Zamira and Daddy
Originally uploaded by vczdavis

Holly was born on March 11th at 1:13 am she Weighted 8lb and was 19.5 inches. She is pictured here with her Daddy only a few hours after birth, while mom is in recovery taking the photo. Holly had many pictures posted on her website here:

http://hollyzzdavis.zigmont.com/

Holly Daze

This is Holly's Mom, and I am in a daze, I am so in love, and never thought that motherhood would suite me so well. Sadly I will be return to work after 24 weeks of amazement and simplicity and magic with my new baby girl. I started keeping a daily Journal about 6 weeks ago, and will post those here for archival purposes, and will then plan to keep up every few days writing little notes and memories about life with my wonderful Holly.