Friday, June 24, 2011

Flip Flop Teething

I sure would like to see how Marlena is doing this, but it seems every time I turn around she's in a different place than she once was. She's not crawling yet, so I think I have a super rolly polly bug on my hands. This time, she found my flip flops.

This is to give an idea of where she was on her play mat.

And here's my wonderfully teethed on shoe. :)

Monday, June 20, 2011

Avery's Shoes

Marlena is now the proud owner of a beautiful little blue flower clip from Avery's Shoes!

Please support this boutique! The boutique is owned by Avery's mom! The proceeds go towards helping Avery, who was born with hydrocephalus and cerebral palsy, receive therapy.

Please "Like" her Facebook page here and check out her shop, too!

Friday, June 17, 2011

Prop Sitting

I am seriously impressed with how well Marlena is trying to sit up with this prop sitting technique we learned at P.T. !

Tuesday, June 14, 2011

THOUGHTS OF A MOM by: Maureen K. Higgins

A mom from our hydro group on Facebook posted this and it is just so beautiful I had to share it, too.

by: Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you.
You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.
You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right.
Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our child's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose child's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable.
We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children.
We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for
the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Friday, June 10, 2011

Lots Of Loops

These are some of the things I've been working on lately! I just love working on hats! I am sure once I get tired of making hats, I will try to make other things. It is just so easy to get creative and let your imagination flow through the yarn. I didn't go by a pattern for the white pony at all!

I have opened up an crochet shop! If you would like a custom made item, there is a tab on the side where you can request something to your own taste! I would be more than happy to make something unique just for you as I work on getting the shop up and running and add more things.

Here is the link to my shop:

I am also still making hats for Hats For Hydro! Please click this link to see what that's all about!

Thank you very much for all of the support and encouragement I've been receiving from all of my friends and family. It really means the world to me!

Wednesday, June 8, 2011


 Can you guess what I'm having for dinner?

More, please! (She looks like a baby bird!)

Okay, lady, where's the rest? You don't mess with my food!
Ah, a nice, warm bottle to wash it down. All better!

Rockin' and Rollin'

This is a picture of Marlena earlier today. Originally, she was right next to the couch where you see the teething ring. I walked away to do a couple chores, and when I checked back in on her, this is what I found! She sure is scooting along! I am so thankful, every single day for my beautiful daughter.

Tuesday, June 7, 2011

Happy Half Birthday, Marlena!

Marlena turned six months old today. It is hard to believe that my little baby girl is already half a year old. Where has the time gone? Why do we always find ourselves asking that question after having kids? It's strange! She weighs a little over 16 lbs. and she's about 26 1/2 inches long. I think she's doing really well! Her head circumference has plateaued at about 46.5 cm. Six months old. Wow.

 I would now like to reminisce about the three days that I considered abortion. I was in my 21st week of pregnancy when I was told that she most likely had holoprosencephaly with severe hydrocephalus. The doctors spoke of nothing but doom and gloom, and about how they weren't sure if Marlena would be able to perform even the simplest of tasks along with the talk of vision and hearing impairment.

I was a complete emotional basket case during my pregnancy. I've always been against abortion, but there I was, considering it. It went against everything I've always believed in. I was such a hypocrite to consider it as heavily as I did, and I might I add that those three days of contemplation were the worst three days of my pregnancy. 

During the night of that third day, I was driving back to my mom's house to pick up Vincent after dropping my husband off to work. I was having such a hard time. I was so lost, in such absolute despair. I saw a church with a lot of cars. I was crying hysterically when I drove up, parked my car, and walked up to the doors where some men were in a group talking. They looked at me, with concerned expressions, and escorted me inside. Tears still stained my face incessantly, one after the other, as if they were racing gravity to get down my face. I was hurting. I was alone. I was crushed. My baby, who we thought for those euphoric fifteen minutes in the waiting room was perfectly healthy, was sick. Her future was uncertain.

I found peace that night, as a woman took me into a room alone. She took both of my hands into both of her hands. As I continued to explain what was going on with my baby's brain, she stopped me mid-sentence and said, "Sweetie, that's called hydrocephalus. I'm a nurse." I was a little bit shocked. Looking back, I view this meeting as a divine appointment. I looked up to her, in the most girlish, painstakingly hoarse voice, "If I abort this baby, is that murder?" She paused for a moment and said,

"God breathed life into your baby."

I felt like these words were being spoken through her by Jesus himself. The conviction in her soft, pleasant voice when she spoke this sentence flowed into my soul. I didn't just hear these words, I felt them. She took me into the main area of the church where they were having a special guest speaker that night. I cried the rest of the night, holding both hands on my big belly, praying for a miracle. My family was pretty angry with me after I got home, because I didn't exactly tell anyone where I was or what I was doing. I just had to go. I had to find out more about the only One I had to turn to. Now I know that He is real. Miracles are still happening. Jesus is still working through people to help us. I am so, so thankful.

Earlier today I saw a girl while I was picking up some groceries who was there at the church that night. I haven't been back to that church since that night. A couple friends encouraged me to try out Renew, a church of a small, but tight knit congregation. I love them so much! So I started to learn more there and embarrassingly, haven't been back to the church I went to that night. The girl that I saw there remembered me. We used to ride the school bus together a while back. As I spoke more with her about everything I've just blogged about, she realized who I was talking about. She gave me her phone number and name and we connected again today after almost 10 months.  It was only for a few hours, but she set the foundation for my state of mind for the rest of my pregnancy. Of course I had days where I'd freak out, but during those harder days, I always knew from that point on that I had Someone to put my faith in and turn to.

I look at my perfect, beautiful girl, now at six months old, and words just can't describe how thankful
I am for her.


Monday, June 6, 2011

A Hook and Some Yarn

Over the last few weeks, I have been dabbling in the art of crochet. I think I'm doing well with it and must remind myself that practice and patience will only make me better at it. I've already completed some really cute hats. They are so fun to make! I haven't really had a hobby that I've enjoyed for a while now. I guess a lot of my loss of interest stems from having two babies in diapers and being stuck inside while my husband works. In crochet, you loop yarn over, and over, and over again! With this new found love of crochet, I have been inspired to start a little online shop for the things I intend to create in the future, aptly named "Loop-de-Loop!"  My husband was sweet enough to make me a logo in PSP all from scratch! Our family really needs another form of income. We already can't afford to pay the bills we have on his income alone, so something has to change. Regardless of that, I have a very giving heart. I believe that we should use our skills to serve others, as the Bible tells us to. It just seems so second nature to me. So with this, I've also received an amazing amount of support and positive feedback for my idea of "Hats For Hydro," where I wish to give every new little one who is beginning their lives into the journey of hydrocephalus a hat that does them justice and keeps them warm. I've already made one, albeit slowly, and sent it off today. I've added some pages to my blog for each of these.

In other news, I believe Marley is going on a growth spurt! She ate 7 oz. at 2PM, 7 more oz. at 4 PM, and then another 7 oz. at 6:20PM! She was just getting so angry with me for each bottle, and each time, they soothed her back to her happy self. She has been somehow scooting herself across our family room. She kind of puts her head down on the carpet, and pushes her feet against the floor at an angle to get a little inch forward. She's doing it really slowly, moving perhaps a couple feet over 20-30 minutes. She really, really wants to go! I am thanking the Lord for each miracle after the other. I had a wonderful phone conversation with our minister from church today and I just loved his ideology that "Miracles don't run out." 

Wednesday, June 1, 2011

Bedside Manners and Miracles

I've met with Marlena's neurosurgeon for now a total of three times. The first two times highly upset me because of the comments I let get to me. This time was a pleasant visit. I was so nervous, but he wasn't too bad this time around. I think perhaps he's caught on to some bedside manner etiquette!

The good news is that her shunt has been working well. He could see about one centimeter of improvement in the measurement of her ventricles since her last cranial ultrasound across the front. I read 33.4 mm on the screen, so, splitting that would give a measurement of around 16 mm per ventricle. Marlena's ventricles are very distended, especially on the left side, which grew alone to around 70 mm by the time she was born, so I would be more interested to understand the big picture, but I'm happy with the information that was available via ultrasound. I know the back of that left ventricle put enough pressure on her brain for the radiologist reviewing her CT to describe "probable encephalomalacia left superlobe," which is basically translating to brain damage. Improvement. That's all that matters, right?

The not so good news, is concerning Marlena's skull. Her surgeon thinks that her sagittal suture has fused, causing craniosynostosis. Her specific head shape is described as scaphocephaly, which is elongated and aerodynamic. He reviewed her last CT and tried to get a good look at the bones in her head, but he couldn't be completely assured that it was fused, although he's telling me that it more than likely is. We are meeting with him and his nurse practitioner in three months at a cranial band clinic to further discuss the issue and schedule more imaging studies. The talk of cranial reconstruction does not sit well with me. He did not mention any medical reasons as to why the reconstruction would be suggested. When I asked how it would affect her, he gave me more of a cosmetic response. I was told that it may affect her around others socially. I am completely aware that this condition could cause issues for her medically, but that is not the path of response her surgeon took. So, until then, we'll just wait and see. All I can say, is that I'm not putting my baby through such a rough surgery purely for cosmetic reasons. I think her head is absolutely beautiful.

So, milestones. Lets talk milestones.

Marlena has been doing exceptionally well. Better than we were ever given hope for. I find it hard to digest being told by the same person to be realistic about her development to finding her head shape worrisome of what some mean kids might say to her when she's older. If she isn't going to develop well, why worry about how she'll respond to ridicule? I'm not understanding this man very well.

 During the follow-up we went through a verbal list of developmental assessment with his nurse. Marlena is currently still on target with her age. She can roll over, smile, coo, laugh, grab toys independently and play with them for periods of time, grab her feet, and keep her head and trunk steady while being supported.

My husband and I are doing our best to live one day at a time. As with pregnancy and a diagnosis of hydrocephalus, we all know there are many unknowns. Will my baby see? Will my baby hear? Walk? Talk? Smile? Form relationships? When the baby is here, many of those unknowns may be revealed right away, but it could take years to understand your child from a developmental perspective. All of our babies are learning things at their own pace. Some need more time to heal. Some have to overcome more obstacles than others. Each case is so unique. We often wonder if we're going to hit a wall with Marlena's development. I feel that I still have a good outlook. If we hit a wall, when we hit a wall, we will support her with every resource available to us for her chance towards her greatest potential. I will not love her any differently than if she didn't have hydrocephalus. I feel justified, however, in saying I am not a stupid person to hope and believe there is a chance she will not be delayed. That's what faith is all about! 

She can do so much and I think I would be a fool to say that I didn't understand why. I do know why. She had almost no visible brain tissue at birth, but she's functioning with her brain. The reason why she's doing so well can't be answered by a doctor or a surgeon. I'm not saying that I am living in Lala Land and can't be realistic. This world is our reality and we are in it to face challenges. I can't say that I always handle these challenges the best, but I do have faith. I believe our Lord is the only one who can answer to the reason she's doing well, and he would say, "Me."