Jenny was baptized today!

For the four people who haven't seen my Facebook updates today, lol, Jenny was baptized this morning. It was an amazing day. I've always felt that religion and spirituality is an intensely personal experience and therefore I haven't pushed my beliefs onto Jenny. I wanted to expose her to different religions and let her decide what felt right to her. I remember a Buddist phase in her early teen years and Curtis took her to his church in the last couple of years. But it was her boyfriend, Chris, and his family that brought her to Gateway and introduced her to youth group. I have seen such a dramtic change in Jenny recently... a sense of coming home and inner peace. It's lovely. Here are some pictures from the baptism, thank you for sharing this with us.

Jenny was so happy today!


This is Sledge, Jenny's youth group pastor, with whom she has formed a very special relationship. You can so see the connection in this photo.


My favorite shot of the day. So powerful in prayer.


The best picture I've ever taken! Jenny is completely submerged... you can see the water completing covering her face and body. This was snapped just before she emerges from the water. It truly symbolizes the cleansing of the soul and the rebirth of Jenny as a Child of God.


Check out Sledge's fist pump! He is so stoked!


Pure joy and love.


Look at that purity, so much love.


Jenny had so many friends show up for her baptism. I am so proud to be her mom!!!


Thanks for looking!

The field trip blues...

I accompanied Anna's second grade team Tuesday on a field trip to the zoo. What a marked difference between this trip and the one a few weeks ago with Dominic's kindergarten class. First off, Anna is scared of school busses. The motor noise, the bright color, the exhaust smell, and the sensory input once on board is just too much for her to handle. She has only ridden the bus in the past for a short time in PPCD and when she had to go to kinder the first time across town because our home campus didn't have special education services. So I asked if I could either a) ride the bus with her or b) she could ride with me and we'd meet them there. (It's about a 45-minute drive to the zoo.) She was allowed to ride with me but it required that I sign her out of school, then sign her back in when we returned.

When I first arrived in her classroom this morning, she didn't see me. I was able to quietly steal a seat without disrupting the class and watch her. She looked so typical sitting at her table and looking at a book. After a few minutes she spotted me and the hugest grin washed over her face. That made my heart just about burst. Then it was time to line up and get on the busses; she was assigned to be buddies with two other girls and I was thinking that maybe once we were at the zoo, she would stay with her buddies and I could chat with the other adults.

We got there waaaay before the busses did. And there were at least 6 other schools with multiple classes there. I've never seen it so crowded. We waited in the car until everyone else arrived. Finally we join the class and start the adventure. One of the first things I notice is just how much Anna has grown this year. Granted, she is a year older then her peers since she repeated kindergarten, but this whole mess with the precocious puberty has taken its toll on her growth.



The next thing I notice is that Anna is not interacting with her peers at all. Not even chit-chat or anything. She is sticking by my side or with her special ed teacher. Throughout the entire time of looking at the animals, she only talks with the adults. We were there only about 30 minutes before she started asking over and over and over again when it would be lunch time. So I had a whole hour of "It's not time to eat yet, sweetie… just a little longer." She did eat a few grapes while wandering but she just seemed to want her lunch.

5 minutes into lunch, she started asking over and over and over again when it was time to leave. She sits next to some girls on the picnic bench and there too, she doesn't interact with them. She is worried only about a toddler who is across the table from her. The kids had nothing to do after eating and about 20 minutes to kill before loading the busses. Anna got pretty agitated during this time and wandered off twice then started poking another little girl. I her the girl say, "Anna, stop! I don't like that!" Sigh.

On the way back to school, she fell asleep in the van. The field trip was very stressful for her. I guess it was the sheer amount of children and the school busses too. Because we go to the zoo all the time and she usually loves it.

I spent 40 minutes in her classroom with her before the other students and teachers got back. She was a total sweetie once we were in the class, just the two of us. She read me some books and I was so impressed with how much her reading has improved. Her special ed teacher was telling me that last year, Anna finished her DRA (not sure what that stands for) reading level at a 6; she regressed back to a 2 at the beginning of this school year and now she is testing at a 12!

But overall, it was one of those heart-heavy days for me. Realizing that she is part of the group, but still very separate. The other kids want to interact with her, they want to be a friend to her, but she rejects them. I see her hanging on the periphery, having it cause stress, wanting only for it to be over. This picture really illustrates it to me… how's she's always on the edge of things.



The aggression is so much better now. Switching from Risperdal to Abilify has made a huge difference in that. But the anxiety and perseveration is worse, so I'm going to drop a note to the neuro. I don't know if we have room to go up on the Lexapro or if we need to do something different, but she seems pretty stressed at school. Maybe this is just her normal state though.

Thanks for reading.

The baby doll birthday party

Anna has lots and lots of baby dolls but two of them are very special... George (named after George Washington) and Audrey (named after a neighbor child that lives up the street whom Anna adores). George and Audrey are twins, though George doesn't smile and Audrey has a big grin... and they came to our family about a year apart from each other. Anna takes George and/or Audrey everywhere with us. They are about the size of a real three-month old baby and we get so many people stopping us when we are out. All the time we hear, "Oh wow, I thought that was a real baby!" I've laughingly joked that we need to put a hidden camera on the babies... they would be a YouTube sensation! We buy them real baby clothes at Goodwill and Santa brought them real diapers, bottles, and other accessories the last two Christmases. They really have become members of the family.

I thought it would be fun to have a birthday party for George and Audrey to celebrate their "first" birthday (which I think we'll repeat every year Anna wants to). We initially had it scheduled for last Saturday but Anna got sick and we had to reschedule it. Since today was an early-release day from school, we had the party this afternoon. We had decorations, snacks, drinks, and cupcakes. We even sent out invitations to the neighborhood kids! (Any excuse for cupcake, eh?) What a fun day! All of Anna's baby dolls attended, and Annie and Audrey brought their dolls too!

Here are some pictures (you can see George and Audrey in the third picture from the bottom, they got matching outfits for the party)...





















You know the best part of this day? Audrey (the girl in the Orange Crush shirt for whom babydoll Audrey is named) brought down a deck of cards to show Anna how to play War. She thought that Anna might be able to understand the game and play it in a group. Though Anna didn't quite get the concept, the other girls helped her, and she actually sat there and played cards for nearly 15 minutes. I get misty-eyed thinking about it.

Thanks for looking!

Way Back Wednesday, the search for a diagnosis

We spent the morning in the cardiologist's office for an echocardiogram and EKG on Anna. The geneticist wanted to make sure the connective tissue disease we have in our family isn't affecting her heart like mine (I have a mitral valve prolapse). The echo and EKG were normal so that is one more thing checked off the list. It made me remember when Anna was 3.5 and had started having seizures. I was wondering at that time if we should continue searching for a diagnosis... when we get a new symptom, I always struggle with this decision. How much trauma do we put Anna through and how invasive do we get in order to find out what she has? Here's a post from 11/29/04 on iVillage's Child Hypotonia board:

~~~~~

DH and I are considering opening up the diagnosis search again. Anna had another seizure on Friday (this makes 6 tonic-clonics total, 5 since the end of September). With this new label of epilepsy, it adds a new piece to the Anna puzzle. Could a geneticist now look for something that hasn't been looked at before?

Finding an answer wouldn't change how we are managing Anna's care, except for the seizure control piece. (I'm going to start a separate thread about that.) It would help us know what to expect (what we all are wishing, right?) and maybe help us find more balance in our lives than we currently have.

It means that we would need to seek out someone with more experience or expertise than the folks we've been dealing with, because they've all said, "I don't know." It means maybe putting Anna through more invasive tests. It most likely means that we still won't have a diagnosis at the end of it all.

Her symptoms include: epilepsy, hypotonia, microcephaly, global developmental delays, sensory integration dysfunction, high myopia (-7.5 rx), failure to thrive (resolved at age 3), feeding and sleep issues.

She has tested negative for: metabolic disease, mitochondrial disease, Rett Syndrome through MECP3 gene, Angelman Syndromethrough methylation and UBE3A sequencing, chromosome analysis, glycosylation defect, and 7-dehydrocholesterol. She has had two normal MRIs and EEGs.

I wanted to get your opinions, advice, cautions, and two cents. It seems like with the seizures happening more frequently, SOMETHING is going on, we just don't what. Is the epilepsy a symptom of a syndrome or just plain ole epilepsy? Obviously, we need to control her seizures... more about this in my next post. I need a reality check. Thanks.

Holly and Anna, 3.5, no dx.



~~~~~

I have a whole slew of new tests that she's tested negative for but I would still like to know. Thanks for reading.

iNSD Challenge at DST

In honor of International Scrapbooking Day (iNSD), DST is hosting a great challenge to win a diamond membership. They have offered this gorgeous kit created by the ScrapMatters Design Team (Becca, you did a great job on your portion, btw!) and you have to scrap a layout with this kit and upload it to the challenge gallery by midnight tonight. I decided to go for it, I'm feeling lucky!

Here is the kit, isn't it gorgeous? And it's totally free!


And here is my layout.


Thanks for looking and wish me luck!

April 2010 Siggies Slideshow

Here are the siggies I made in April!

Thanks for looking!

iNSD Grab Bag by Becca at ScrapMatters!

Becca has an incredible grab bag available at ScrapMatters in honor of interNational Scrapbooking Day. Trust me, this is a great deal! She has created four completely new products and they are available at an amazingly low price until May 5 only. Inside the bag you will find: one kit almost too big to be a mini - with 7 papers and 34 elements, 4 12x12 templates (layered files and pngs), 5 text paths (for PSE and PS), and a pair of retro alphas. This will only be available for a few days before its broken up, so what are you waiting for?!?

iNSD Grab Bag


My Layout



Thanks for looking!

Way Back Wednesday

I got the most incredible email from somebody on Facebook recently... one of those "isn't it a small world" moments. This mom has a three-year old daughter with complex issues and she was researching PDD-NOS. She came across my YouTube videos (which is too cool! we show up in Google search results for PDD-NOS!) and watched Living with PDD-NOS: A Trip to the Park. She said it reminded her so much of her own daughter, just an older version. She followed the link to my blog here (hi, Nicole!) and realized I looked familiar. We have actually talked before a couple of years ago when I was running a fundraiser for Brigid who is diagnosed with MELAS, a degnerative mitochondrial disease. Come to find out, this mom who wrote to me also lives in the same city as me! I can't wait to get to know her better and be a support to her.

Anyway, this brought back some old memories for me. I remember when Anna was 2-3 and being desperate for information, hungry to talk to parents with older children with similar issues, and not finding many parents out there. At that time, I was an extremely active member of iVillage's Child Hypotonia message board. I thought it might be useful to look some of my old posts and share them on Wednesdays as a new feature... Way Back Wednesday! I'm also going to add a bit of commentary and maybe some old pictures too. It could help moms with younger kids know they aren't alone and also show where Anna was then compared to now.

I found this post from December of 2002. Anna was 21 months old. At that time, she had some global developmental delays (including speech, some physical stuff, and social skills) and hypotonia. We did not yet know about the PDD-NOS and she didn't start having seizures until she was 3.5.

~~~~~

Hi everybody... I've been gone for awhile, here's an update on Anna...

My last final exam is tonight... YEA! What a tough semester this has been. I've been lurking on the board, but have been too busy studying to post anything lately. It sounds like everyone is doing pretty good and getting ready for the holidays. I should get an A in both Pharmacology and Microbiology. Woo-hoo! Now I can relax and concentrate on Christmas. (BTW, my older daugher, Jenny, turned 11 last week. Wow, how the heck did that happen???)

We made a family decision a few weeks ago that I will be taking a long break from school to focus on Anna. We all agreed that putting her in daycare will not help her flourish and besides it would break all of our hearts. I'm not sure how long I'll break from school, maybe until she starts kindergarten in the fall of 2006. If she starts catching up and things look good for her to go to preschool, the plan may change. In the meantime, I'm going to focus on "home-schooling" her, being her full-time OT, ST, and teacher. I'm going to enroll her in a Gymboree class for gross motor development and socialization. I'm going to take her out more, expose her to more kids (and probably more colds-LOL), and try, try, try to help her catch up a little.

In the last couple of months, Anna has started babbling lots more, and it almost sounds like jargon talk. She has finally started making the "ma-ma" sound, though it comes out like "maaaaa" -- hey I'm counting it as mama! She's picked up a couple of more signs, like milk and dog, so her total signs are up to 15 or so. Her foot isn't turning in quite as bad as it was before, though when she's tired, in it goes and down she falls (this morning, she fell twice). She's still not eating much in the way of solid food, but she's taking a bottle with Pediasure, formula, or milk with no problem. The whole sleep issue is still atrocious. She's up anywhere from 1-3 times a night, but she doesn't always want a bottle each time. This last week, she has started crying out in pain (or what sounds like it) and is nearly inconsolable for several minutes. It's very sad and I'm not sure what's going on or how to help her. She only does it once and it's usually early, 1-2 hours after she's gone to sleep. Ugh. Her daytime schedule is still really erratic too. Sometimes she takes 2 naps a day, sometimes just 1. It depends on how early she gets up for the day (anywhere from 5:45-7:30). I'm so much looking forward to not having to study when she's sleeping... I see a lot more naps in my future. :)

We're still waiting on the results from her genetic tests. The FISH for Angelman's came back negative, which we figured since she doesn't have seizures or hypopigmentation. Once we get the results from the other tests, we may go ahead with the DNA methylation study for Angelman's... a lot of her symptoms fit the gene mutation version of the syndrome. I'll let you know. Well, this turned into a novel. Sorry! I'll be a better friend in this community again now that I'm done with school. I love you guys and thanks for all your support!!!

Holly and Anna, 21 months, hypotonia, global delays, no dx.

~~~~~

So interesting to go back and read that! We did proceed with the DNA methylation study for Angelman Syndrome and it was negative. I was taking my pre-requisites to apply to nursing school, I got accepted, then deferred and declined in order to focus on Anna. I had forgotten that she still took a bottle (in fact, Anna stayed on the bottle until well past her second birthday) and that Pediasure was her main source of caloric intake. She was only 21 pounds at 21 months. Oy, those sleepless nights! Anna slept like a newborn, up several times a night, until she was three or so? Here are a few pictures of her from that age:

She has always loved to dance! Here we were at a performance of Jenny's... Jen used to take a sign language class (so that she could help teach Anna sign language and communicate with her as well as others) and the class would perform several times each semester.


At Christmas, opening a musical present. You can see that she is initially scared of the bongo toy as she is reaching up behind her to grab at Daddy. She still grabs us when she's scared today.


Another musical toy, another grab at Nana.


She grew to love this Mozart music cube!


Thanks for accompanying me on my journey to the past! I'm looking forward to another post like this next Wednesday.

Where do you start?

Because I've chosen to make our story public, and especially because of the PDD-NOS videos I made of Anna on YouTube, I get a lot of emails from other parents who have questions or want to say thank you (you're welcome, btw). Recently, a woman contacted me about a little girl she is adopting from another country that has microcephaly (basically this means a small head circumference... Anna's head circumference fell off the chart at 6 months of age and hasn't been back on since), cerebral palsy and other issues. She is trying to find out as much as possible about the potential challenges of parenting a child with special needs and is reaching out to other parents for support. I was so honored to be contacted and wrote up some initial advice for her specific to cognitive challenges and thought it might be useful to share here. I wish her the best of luck in her adoption and know she will be blessed beyond measure for opening her heart and home to this special little girl.

Let's see, a few things come to mind that you should do when parenting a child with a cognitive disability. First, contact your state- or county-run program of services for mental health and mental retardation (MHMR). We live in Texas and ours is funded through the state and run by the county. They recently changed their name from MHMR to Integral Care to keep up with the (thankfully) progressive movement to ban the "R" word. We have decades-long wait lists for services so the sooner you can get your child signed up, the better. We first took Anna to MHMR when she was five; she was given some IQ tests to verify eligibility and we were assigned a caseworker. She meets with us monthly. We get community service and respite hours where networked providers can come to our home and work with Anna on specific goals... anything from eating in a restaurant, to academic goals, to self care, to a break for us. There have been a lot of changes in services lately and we've lost quite a bit of hours. Luckily my mom is a huge support and has contracted with the state to be a network provider so she is our respite person (and she lives next door!). That is a very good thing for continuity and convenience. Don't hesitate to ask family for additional support.

Up until age 3, each state offers early intervention programs to help with speech therapy, occupational and physical therapy, social skills, and academic skills. Contact your local ECI (early childhood intervention) office to schedule an intake as soon as you as you have concerns. They will get you set up with home visits to start on some goals. If you have good insurance, you should also get private ST, PT, and/or OT. If your child has sensory integration dysfunction, they can get specialized therapy with an OT to help with that. Until your child starts school, you can really make an impact with therapy.

As soon as your child is 3, contact your local school district to see if they offer a PPCD program (preschool program for children with disabilities). Between the ages of 3-5, the school district will take over where ECI leaves off... continuing therapy and placing your child in a preschool program geared to help maximize potential. You'll soon become familiar with the IEP (individualized education program); the IEP will dictate academic and social goals for the school district to work on from age 5 on.

I also encourage you to join a support board. iVillage is where I got my start and I met the most incredible group of mothers whose children have similar issues. I started with a child hypotonia board, added developmental delays, and finally added the seizure support board after Anna's issue got more complex. This group of women I've known since Anna was 15 months old and she is now 9. We actually meet once a year in person for a retreat without husbands or children. It's so nice to be with other moms who "get" it.

I have lots of resources, so if you need more information or know any parents who may be looking for information, please don't hesitate to contact me. My email is holly0817@hotmail.com. Good luck to all of my sisters in motherhood parenting children with special needs.

New releases today from By Becca and AnnaBV Designs!

I'm so excited! Today I'm going on a field trip with my son's kindergarten class! Since Julian was killed, I've been taking every opportunity to grab life with my family... and consequently, I signed up as a volunteer for every field trip from now until the end of the year. I am so going to enjoy spending some extra time with Dominic. Plus this should give me lots of great photo ops!

New from By Becca today at ScrapMatters is this gorgeous, lush garden kit called, Silver Bells and Cockleshells. It is truly stunning and one of her best kits ever. I'm definitely going to be scrapping another page with this kit within the week. There is also a coordinating wordart pack that is equally beautiful.

Silver Bells and Cockleshells


Silver Bells and Cockleshells Wordart


My Layout


AnnaBV Designs is releasing It's a Boy's World today at ScrapOrchard. This kit is stuffed with boy goodies and is so versatile. She has a coordinating alpha, quickpages, and an add-on! This is definitely a must-have for your stash.

It's a Boy's World


It's a Boy's World Add-on


It's a Boy's World Alpha


It's a Boy's World Quickpages


My Layout


Thanks for looking!