Wednesday, June 12, 2013

On Tuesday I gave a speech about Stella and her journey thus far, with an emphasis on PT and the Early Intervention program in our county. Early Intervention or "Birth to 3" is a program for kids, some with a clear diagnosis, like Stella, or for kids without a dignosis that are showing a delay in an area of development. Stella qualified automatically for the program, given her diagnosis of Spina Bifida. 

A few times a year the staff at her therapy center meet with others in the community that are involved with young children that have either a developmental delay/disability. I spoke in front of maybe 20 women, the only man there was Sam :) They meet about all sorts of topics but open up a time slot for parents to speak about their expiernces with the center. I cried the first time reading it to Sam, but thought I would be OK when it was time for me to speak. But when it was time to speak, I couldn't even make it through the first sentence without the tears starting! If you speak to any parent that has gotten a prenatel diagnosis, it doesn't matter how long ago it was, it is hard to talk about. I still, probably once a day think about what it was like for Sam and I when we found out Stella had Spina Bifida. Hard times. 

I made it though my speech, stopping a few times to catch my breath and wipe my tears away. Stella wanted me to hold her so I held her the whole time! It was such a wonderful group of people to speak to and I am really glad I did it. Here it is!!

 September 26th, 2012 was a great day for our family. We found out during my 19 week ultrasound, that our third child was a little girl. We already had 2 boys, and were estastic to find out they were going to have a little sister. We were absolutely shocked when the following morning, my midwife called me to tell me some abnormalities were found in our unborn childs brain. The next few weeks were a blur.We were immediatly sent to a High Risk OBGYN in Everett for further testing. After a handful of ultrasounds, blood work, and an amniocentesis, were were told our child had an open neural tube defect, myelomeningocele. Or, what is also known as Spina Bifida. Her spine had formed down to her lower Lumbar and upper Sacrum region, where it eventually malformed causing an opening in the skin. The malformation of the spine caused excessive spinal fluid to collect in her brain, a condition known as Hydrocephalus. She was also diagnosed with Chiari Malformation, which means a downward tugging of the brain stem. We were told she needed immediate surgery, within 48 hours of birth, to close the opening in her back. She might also have needed a shunt to drain the excessive fluid. A shunt is a internal valve in the ventricle of the brain that is connected to internal tubing that runs from the brain to the abdomen. It helps with the flow of spinal fluid. We were told since the spinal defect was low she had a good chance of walking, though most likely with assistance, and that all children born with Spina Bifida had issues with bladder and bowel control.

On February 6th 2012, my 27th birthday, Stella Joy Abraham was born by cesarian section at the University of Washington Medical Center. She was sent immediately down the street to Seattle Children's Hospital, where at 20 hours old she underwent major surgery to close the opening in her back. This surgery does not fix the defect, but is necessary to reduce the risk of infection. She spent 11 days in the hospital. While there, my husband and I learned how to catheterize her bladder, change the dressing on her incision, and what we should expect the first year. She was so fragile, this 7 pound newborn baby, but she had the spirit of a champion fighter. She was off pain medication within days of her surgery and her Hydrocephalus was stable, so surgery for a shunt wasn't needed at his point.

Before she was even a month old, we were contacted by Ann Marie, at the Whatcom Center for Early Learning, to start the process for her Physical Therapy. We had met with Physical Therapists during our initial hospital stay who taught us different stretches to do with her but knew we needed to start formal PT right away. She had very little movement in her legs, they were stiff and hyper extended. Ann Marie made all the arrangements around us. She came to our house and was patient while Stellas big brothers played and we cared for a newborn. We talked candidly about our family and what is important to us. After a few visits we had an Individual Family Service Plan made. We eventually did a physical assessment, and we found she had an obvious gross motor delay. This was expected considering the nerve damage in her spine that causes her weakened legs.

I had never heard of in home Physical Therapy. I thought we would be going to a therapy center to receive our services. Ann Marie explained how beneficial in-home PT is. How teaching children in their natural environment and in their comfort zone helps them reach their maximum potential. Also, it was helpful since we had 2 older children and on days that my husband was at work, our boys could go play in their room while we were meeting.

By the time Stella was 2 months old we were starting our therapy. We worked on tummy time and stretches to do with her. She was so little at this point, sometimes only nursing and sleeping through it. We also talked about, and were offered other resources in the community such as the Parent 2 Parent support groups.

Around 6 months old, Stella was starting to roll over and was attempting to sit up, unassisted. We started working with a new therapist, Alis, and changed our every other week appointment to once a week. I felt like this was a critical time in her development. Her legs were relaxing and she was showing she had feeling lower in her legs then we had expected. Her feet and ankles still had very little sensation but her hips were getting stronger. Once we switched to PT every week, we saw her development blossom. She started sitting unassisted and eventually started army crawling. By 9 months old, she was ready for her first set of Ankle Foot Orthodics. Alis contacted Stella's doctor for the prescription, wrote a letter of medical need for insurance, and came with us to her appointment to be fitted. At this appointment, our daughter tried to stand for the first time. Alis brought over a standing frame for her to learn to bear weight. I credit this piece of equipment, probably from the 1970's, with strengthening her legs. She stands up in it and is secured into it and can play with toys in the tray or eat a snack. Our couch has been one of her main therapy tools. It is the perfect height for her to stand at and independently learn to bear weight.

One of the tools that I love is the AEPS. Every 3 months we sit down and do an assessment of Stella's skills. I like evaluating not only her gross motor but all areas of her development. She always shows growth in each area, especially scoring high in the communication and social areas. We always have goals set – short and long term. We periodically discuss these goals to see which she have met and how we can help her reach the ones she has not.

At 13 months old, we were blindsided a bit by her Neurosurgeon deciding it was time to intervene regarding her Hydrocephalus. Her head circumference was going up and we were seeing some swelling on her lower back, indicating that spinal fluid was still not flowing properly. She thought Stella would be a good candidate for an ETV – an Endoscopic Third Ventriculostomy. They would enter her brain and puncture a new hole in her ventricle, to allow for spinal fluid to flow more freely. This sounds scary and extreme, but if this was not offered then she would of needed a shunt. Shunts save lives but have 100% chance of needing at least one revision. Her ETV was performed seamlessly, she needed only 1 night in the hospital. As of her MRI last month, it seems to be working perfectly. Now that her hair has grown back, you can barely see the scar from the surgery.

In April we started a whole new journey in the Whatcom Center. A spot opened up for the weekly playgroup. It is an amazing opportunity for Stella to interact with kids her own age. I love the structure of play time, songs, and snack time. Every week I see her come more and more out of her shell. She is starting to initiate play with others. This is also a great time for myself to talk to other parents. We have such supportive family and friends but don't know many people who have a special needs child. The parents I talk to at playgroup understand what it's like to watch your child be poked and prodded by numerous doctors. They understand what it's like to be your child's advocate and work to show the world your child will not be defined by a diagnosis. Playgroup has become a priceless aspect for Stella's continued growth.

Whatcom Center has helped make therapy become a way of life for us. Alis not only works hands on with Stella but teaches us what we can do to help her flourish. In that 1 hour a week we meet, she answers any questions we have. She is a great resource for sign language, games to play to enhance fine motor skills, and ways we encourage speech. She gives us the tools we needs to give Stella every opportunity to thrive and explore. We always discuss upcoming doctor appointments and her general health. There is never a time when therapy is over and I have unanswered questions.

Alis recently brought over a walker for Stella. She is starting to warm up to it a bit and will put her hands on it. She quietly studies and explores it. It's exciting to know that we are working on her walking. We have accepted the fact that no one has a crystal ball to see exactly what Stellas future mobility will look like. Braces, Walkers, Crutches, and Wheelchairs. They used to be intimidating but now we look at all of these as tools to help our child experience life just like everyone else.

Currently, at 16 months old, Stella is a very typical toddler. She is feisty and funny. She absolutely glows when her brothers are around. She is opinionated and wants independence to explore our home. Just because she is not walking, does not make her any different then any other child her age. The staff at Whatcom Center treat our child as if she is their own. We are greeted with nothing less then a warm welcome. Having this support for our family is absolutely invaluable. I feel like we have these people on our team that will do whatever they can to assist Stella and our family. For that, I will be forever grateful.

1 comment:

Darcel Pritchard said...

Melissa - You are amazing - Your children are very lucky to have you as a mom and I am proud to be your mom - LOVE YOU!