Rock A Bye Baby

There are many things I knew would change when we had Sophia.  I distinctly remember being caught off guard after having Andrew about certain aspects of parenthood.  I knew that the first couple of months would be full of poopy diapers, crying, and sleepless nights.  However, I never expected that Sophia would be still waking up in the middle of the night to eat at 9 months old. 

At Sophia's 9 month check up her pediatrician asked all the standard questions, how many dirty/wet diapers a day, how much does she eat, what is she eating, and then she asked about sleeping.  How many hours does Sophia sleep at night?  Well, Sophia sleeps about 9-10 hours at night.  Continuous? No.  Is she eating when she wakes up? Yes.  Okay well that stops tonight.  She then coached us on how to teach Sophia to sleep through the night.

Well, I have been waiting for this week for the last year and a half...to be able to sleep through the night without being woken up!  Sophia has officially had 4 nights where she has slept through the night!!!  I am so proud of my little girl.  The first night was quite rough.  She was awake and crying from midnight until 3am.  Rusty went in several times to console her without picking her up and she finally fell back asleep.  Since then she has slept through the night each night, and so have we!

I like to move it move it

We are in for a huge change, our baby girl is on the move.  Sophia started crawling on Monday, June 6th during her occupational therapy visit.  She had been getting up on all fours for about a week and would just rock back and forth.  It looked like she really wanted to go somewhere but she just wasn't sure how to get there.  Well, she finally figured it out and now she is unstoppable.

This video shows how it played out.  Sophia was up on all fours and her OT was trying to entice her with toys.  It definitely worked because she started moving towards the toys.  Luckily I was present and able to catch it on my cell phone camera.  I was so excited about it that I forgot that our video camera was about 3 feet away.  But needless to say this has opened up a whole new world for Sophia.

Attempting to crawl and chew a toy

 She is now able to get to all kinds of toys.  Drew is not so keen on this as she tends to pile all the toys near her and protests when he trys to play with any of them.  This also means that she can touch his things, his chair, his shoes, his toys etc.  However, this seems to have made him much more interested in his little sister.  Previously he would give her a hug and a kiss in the morning but that was about it.  Now he will bring her things or laugh when she gets in a compromising situation.  He now pays attention to her and reports back to us on all of her movements, kinda like a small CIA agent.

Downward facing dog

For a little girl that wasn't supposed to do too much, Sophia sure is surprising us on a daily basis.  We ask for your continued prayers - for her head to grow to a normal size for her age and for her vision to improve.  There are no medical interventions that can improve these things so our hope is for a miracle.  We truly believe that her accomplishments to this point are because of the prayers offered on her behalf.  Thank you all so very much for keeping our little angel in your thoughts & prayers, we will never be able to thank you enough.

That's My Girl

At the recommendation of several of Sophia's specialists we took Sophia to see a geneticst.  We chose to go to Houston and see a geneticist who is heavily involved in Aircardi research and treats several of the Aicardi girls.  It took us almost 3 months to get an appointment, but on May 26th we were able to meet with him.  It was such a good visit for us.

The morning of our visit

Our visit started as so many others have, providing a complete medical history from Rusty & I.  Except this time we were asked to provide the medical history of our family as far back as we knew.  Luckily I am very inquisitive about our family's medical issues and was able to provide a pretty detailed history.  The doctor then talked with us about Sophia's medical history.  For such a little girl she sure does have an extensive and complicated medical history.  We had all of Sophia's doctors send their reports, test results and images to the geneticist for his review.  He had thoroughly looked over the records and was able to talk to us about what he gathered from his reading and what he would like to do to proceed from now on.

He also did a very thorough physical exam on Sophia.  He counted her fingers and toes, looked between them to make sure there was no webbing, checked her from head to toe & front to back to make sure there were no obvious or hidden deformities.  He also weighed & measured Sophia. 

After all this he gave us some great news.  While Sophia does most likely have Aicardi, he said that Sophia is by far the best Aicardi girl he has ever seen.  During our visit Sophia was sitting on the floor playing with her toys and babbling to herself.  He said that the majority of his girls don't sit independently and the fact that she was babbling at her age was such a positive sign.  He went on to say that he believes that Sophia will continue with our help, the help of therapy, and those who help in her care, to continue developing as normally as possible.  He did recommend that we have her neuro ophthalmologist take pictures of her retinas, do further genetic testing and enroll her in a study for Aicardi at the Baylor College of Medicine in Houston (which we did).  We are currently waiting for an appointment for Sophia to have her retinal pictures taken, this requires her to undergo general anesthesia in an OR setting & also for the further genetic testing - insurance is the hold up there.

Having said all this, I was so happy and kept thinking, "That's MY Girl!"

If you are interested, here is a link to the study we enrolled Sophia in:
http://www.bcm.edu/genetics/vandenveyver/index.cfm?pmid=6931http://www.bcm.edu/genetics/vandenveyver/index.cfm?pmid=6931

Sitting Pretty

Sitting during therapy

For several weeks we have been working on getting Sophia to sit independently. It was one of the main things her therapists focused on during our weekly visits. We would support her in different positions encouraging her to use her abdominal and core muscles. She was quite reluctant to sit by herself - she would prefer to be sitting supported, standing (supported of course) or lying on the floor. Well, during her occupational therapy visit on May 19th Sophia started sitting independently. We were sitting on the floor and she was sitting right in front of me. I was supporting her back with my hands and then little by little throughout the visit I moved them away until she was doing it all by herself! It was such a shocker to her and us. There was lots of cheering and clapping. I'm not sure that she really had any clue as to why her therapist and I were so excited.

Waiting at the doctor

I think this was by far the most exciting day that I have had since she was born. For so long we had no expectations for Sophia. We didn't know if she would ever be able to eat, babble, sit up, crawl etc. The other girls with Aicardi are very limited in their abilities so using them as a reference we didn't want to set unrealistic expectations.  Needless to say, we have always been hoping for the best but preparing for the worst. So, for her to be able to do something that I never thought she was going to be able to do was...amazing!  I think that it gave me the realization that great things can happen and that perhaps she can do anything. 

Now that Sophia can sit independently it has opened up a whole new world for her. She loves to sit amongst all of her toys and bang, roll and shake them to her hearts content. She has so much more freedom in her movement and she seems to really enjoy it. It has also given me the ability to put her down for longer periods of time allowing her to play while I change out the laundry, work on fixing dinner or doing household chores. In addition, Drew has taken more of an interest in his baby sister, helping her get toys that roll out of her reach or enticing her with toys that make noise or vibrate.

We are so very lucky to have Sophia in our lives and each little milestone that she achieves is like winning the Boston Marathon for us. We just revel in her accomplishments while remembering to keep pushing her farther to continue developing and learning each day.

Playing at home

Just Another Manic Monday

Mondays are Sophia's therapy days.  They are typically pretty hectic days with our house serving as a hub for therapists coming and going.  Here's a glimpse at what today held...

1 am      -  Sophia wakes up for a feeding, then I put her back to sleep
3:30 am -  Up for another feeding, I attribute this to the fact that she is teething, I put her back to sleep
3:45 am -  She is still awake so Rusty gets up to give her Ibuprofen, I'm pretty tired so I let him handle  this one
7 am      -  Drew wakes up and wants to watch cartoons, Sophia follows suit
7:30 am -  I've gotten dressed, now it is time to get the kids dressed, fed and medication administered
8:35 am -  Everyone is dressed and ready to go, Sophia & I take Drew to school
9:30 am -  Vision therapist & mobility specialist are here - We work on getting Sophia to reach for things just beyond her arms length.  She is sitting independently now and we are wanting to encourage her to start crawling. 
10:30 am-  Mommy's counselor is here.  We talk about warm fuzzy things and the not so warm fuzzy things.
11:30 am-  Mommy's counselor leaves and it is time for us to go pick up Daddy for his Birthday Lunch
1:00 pm  -  Back at our house, I feed Sophia and put her down for a nap
2:30 pm  -  Sophia's physical therapist is supposed to be here, but she is running late...
3:05 pm  -  Sophia's PT shows up.  We work on getting Sophia comfortable with the way her body needs to move to start crawling.  She does not like this at all.
3:50 pm  -  We leave our house to head to Mommy's chiropractor. 
4:00 pm  -  Mommy's chiropractor is running late...everyone is running late today
4:15 pm  -  We see Mommy's chiropractor & Mommy feels so much better afterwards
4:38 pm  -  Back at our house.  Sophia's Occupational Therapist is here.  We work on getting her to sit in a side sitting position.  Yet again, she doesn't like this.  Towards the end of therapy she is getting very frustrated and tired.  Lots of tears and cuddling.
5:30 pm  -  Sophia's OT left her keys in her car - so she is waiting for her son to bring her keys
7:00 pm  -  Daddy gets home right as Sophia's OT is leaving.
7:20 pm  -  We all go pick up Drew from school.  Mommy has not had time to go to the grocery store today so we also have to go pick up dinner on the way home.
8:30 pm  -  Back at home.  Mommy & Daddy eat dinner while Drew watches cartoons and plays with Sophia's therapy toys.  Sophia is fast asleep after a full day of therapy.
9:00 pm  -  Just finished giving Drew a bath, Mommy & Daddy give Drew his medicine, brush his teeth, say nighttime prayers and tuck him in.
9:10 pm  -  Mommy & Daddy finally have a moment to talk.  Mommy types away on Sophia's blog while listening to Daddy.
11ish      -  Mommy & Daddy go to sleep, at least for a few hours. 

Beeping Easter Egg Hunt

Ever heard of a Beeping Easter Egg Hunt?  Well, neither had we. However, that all changed on April 21st when we got to experience one first hand.  Sophia's vision teacher told us about this mystical egg hunt that the vision services department of DISD puts on.  Instead of a traditional egg hunt where the kids all line up and start running after eggs when someone says "go", a beeping egg hunt is exactly what it sounds like, beeping eggs.  The organizers scatter eggs that beep around a big open area and right next to the beeping eggs is a basket full of candy.  The kids use the beeping sound to locate the eggs.  When they reach an egg they pick up a piece of candy from the basket and continue on to the next beeping egg, making sure to leave the eggs for the next child.  Of course Sophia is a little young to participate in the egg hunt, but it sure was cute to see all the other kids getting their candy.  Not to mention give us something to look forward to in the years to come.

Beeping Easter Egg

In addition to a Beeping Easter Egg Hunt, we were able to enjoy a morning full of activities with other visually impaired children and their parents.  Sophia was particularly fond of the petting zoo.  A local petting zoo that has therapy certified animals came to allow the kids to have sensory input through tactile stimuli.   They had lots of different animals for the kids to touch, baby rabbits, baby chicks, a snake, and a lizard.  Then they also had bigger animals, a couple goats, a sheep, a pig, a dog, and an enormous rabbit.  I'm pretty sure that the animals weren't expecting such a petite little girl to have so much strength.  She grabbed and held on to them like her life depended on it.  First, one of the baby chicks almost lost a tail.  Then the enormous rabbit became a little less furry on one side.  And to top it all off, much to my dismay, she really enjoyed touching both the snake and lizard, yuck, yuck, yuck!Despite Sophia's tendency towards animal cruelty, it was so amazing to see her interacting with the animals.  Sophia typically keeps her hands balled up when she is touching something new for the first couple of times, but with the animals she touched them all with fully open palms and was so excited to feel their different textures.  I was so blown away by her interaction.  Maybe as she gets a little bit older we can put her in pet therapy or horse therapy.  Who knows...

Sophia's bunny ears

Sophia & the goat

 

Sophia & Papa

At the Beeping Easter Egg Hunt we were lucky enough to meet some other babies and their parents who also had visual impairments.  I'll be honest, I didn't know what to expect.  I thought there would be lots of little elementary school kids and younger, walking and maybe running around with their white canes.  But I was surprised to see that the majority of the kids there had multiple issues, just like Sophia.  They didn't just have issues with their vision, they also had other medical issues including physical or cognitive delays.  There were at least 3 other kids who had microcephaly and I spoke to each of their moms.  It was so nice to speak to a parent who knows what we are going through.  While I know that there are other parents out there who have special needs children, I don't personally know any of them.  I take care of people with needs all the time at work, but they are adults, not children.  So it was a nice bonus to be able to connect with other parents who have some insight into a part of what we are going through. 

Needless to say, the Beeping Easter Egg Hunt was a huge hit for both Mommy & Sophia.

Sophia & the enormous bunny

Sophia, Namaw, Mommy & Papa

Therapy

Over the past few months we have been working hard to get Sophia set up with therapists that will help her physical and mental development.  I am pleased to report that Sophia now has a team of therapists that we work with on a regular basis.  Her therapists have all been coordinated with the help of ECI (Early Childhood Intervention), a state agency authorized to support families with children with disabilities or developmental delays.

Sophia has a case worker, who comes on a monthly basis, to help us review her needs and see if they are being met.  If they are not, or if they change in anyway, we are able to work together to bring on additional help.  Her case worker is also her occupational therapist (OT).  She comes twice per month to work with Sophia in this capacity.  Her goal is to help Sophia with her activities of daily living.  Eventually this will be things like brushing her teeth and hair, getting dressed, and doing household tasks.  Right now, we primarily work on sitting, which she detests, and increasing her muscle strength by "helping" her do things like tummy time, lying on her side, and her head & neck control.  During our last visit the OT placed Sophia on a big exercise ball rolling it around to help Sophia strengthen her abdominal muscles.  She was so impressed with Sophia...she didn't cry even once.  Sophia seemed to really enjoy the new experience.

Did you know there was such a thing as a vision teacher?  Well, we didn't, but now we do.  Sophia's vision teacher comes to work with her once a week.  Her goal is to help maximize Sophia's vision and increase her awareness of the environment around her by utilizing all of her senses.  She brings the most wonderful toys for Sophia to play with.  Sometimes Drew is here during therapy time and I think that he sees the vision teacher as a kind of Santa Clause.  The vision teacher brings huge bags of special toys that have flashing lights, vibrate and make all kinds of noises.  This is all so exciting to Drew who can't wait to start pulling out every toy in her bag.  Sophia's favorite toys are the ones that vibrate and play songs, but her ultimate toy is the one that she can also put in her mouth.  Our goals with Sophia right now are for her to reach for a toy that vibrates or makes noises that is placed just out of her reach.

Developmental Specialist.  Yet another new person that we have incorporated into therapy for Sophia.  She comes twice a month to help Sophia through various physical and behavioral therapy techniques.  In her words, she will, "work Sophia out without her ever knowing that she is working out."  For instance, she has Sophia sit up while supporting her from behind by placing her hand behind Sophia's head and the other hand on her shoulder.  This forces Sophia to use her abdominal & oblique muscles to support herself.  She not only teaches Sophia, but also us.  That way we can do our "homework" between visits.

We are so lucky to have these professionals in our lives.  They are so very patient with us and show us the little things that make such a difference in caring for Sophia.  They have also taught us that items that are ok for other babies are not good ideas for Sophia.  For instance, a Bumbo chair...this allows Sophia to be propped when she is sitting and doesn't force her to hold her own weight.  I never thought of it that way.  It is for these reasons and so many more that I look forward to her weekly therapy visits and can't wait to see the positive impact they will have on Sophia's development.