Wednesday, November 13, 2013

Living on a Rainbow

                                               *DISCLAIMER *

I am NOT pregnant, I technically cannot have anymore babies, and am very very satisfied with my children. 

But seriously I kinda miss being pregnant and having a new baby. I delivered 3 children in a 4 year 4 month period. All I have known for the last 6 years is getting pregnant, being pregnant for 9 months, giving birth, then when that baby is about 16 months old, getting pregnant again. There was a 3 month time between weaning Phineas from nursing and then getting pregnant with Stella. We found out we were pregnant with Roman the month after I turned 22 and Stella was born on my 27th birthday.

Sam thinks I am crazy. He has seen me have horrible morning sickness, listened while I was miserable during that last month of pregnant, held my hand while I delivered our babies and been there for the many many sleepless nights. I told him the other day I missed it all and he looked at me like I was out of my mind. I told him I think all mothers, even when you are 100% sure you are done having children, feel some sort of tinge in their stomach when they see a newborn baby.

We made the decision to have a tubal ligation done after my cesarean with Stella. It wasn't even necessarily because she had major complex medical needs but it was because our family was complete. We had our 2 boys and our girl and we just *knew*  we were done. Now that our kids are getting older, it's getting easier to go do fun things. Sam takes the boys to the movies, and trips to the park and library are crazy fun. Roman is in school and transitioning to a much more independent child. Phineas is a few days from turning 4 and is a bright kid. Our little Stella is rounding the corner to her 2nd birthday, very active and verbal. These are all amazing things and it's such a blessing to see these little people grow up.

I've purged most of the baby goods in our house. Most clothing that is smaller than 2T is gone, all rattles and newborn toys, pacifiers, bottles, play sets, and baby gear is gone. I've kept a few little outfits that all my kids wore home from the hospital, plus their newborn wristbands and hats they wore in the hospital. It's been cathartic for me to free myself of that and look forward to the future. I will always "Awwwww..." when I look back at pictures or reminisce about the past. (Which I definitely did while finding these old pictures)

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.

Monday, February 11, 2013

You're my Sweet

I just peeked over at our blog and realized its been 6 months since an update! I keep a pretty good update on Facebook but there is something cathartic about blogging. So much awesomeness has been going on.

Roman - - The dude is smart. He turned 5 last October and is starting Kindergarten in September. We are trying to ready him for school and we are seeing so much development! He can read so many words. We've lost count. At least 35+ words. He is just so full of excitement for everything and loves life. He still loves to cuddle and just loves his family so much. He is growing into an amazing little guy. Everyday I have a moment where I look at him and think of him being a newborn. He made me a Mama and we have a bond that is irreplaceable.

Finn - - Ohhh Finn baby! He turned 3 in November. Finn is the most loving boy. He tells Stella and I how pretty we are and how much he loves us. He tells Sam ALL day long "I love you Daddy!" We are in the trenches of the "terrible 3's" where my smiley boy goes from pure JOY to  a hot mess, really quick. He is still learning sharing, consequences and discipline. He is really coming out of his shell and very hyper and talkative. He just has the most beautiful brown eyes, it just melts my Mama heart. He looks up to Roman and wants to do everything Ro does.

Stella - - She turned 1 last week. Where did this year go?? I put on FB how amazing her 1 year check up with the Neurodevelopemental Pediatrician went. He had nothing but good things to say. Last time I blogged, I had written about how he wanted her to have a shunt, A week after that, her Neurosurgeon said that she didn't think she needed one. When we saw him last week he seemed happy she didn't have one and thought she is still doing good without one. He did a PT assessment of her and said "Oh yeah, this kid is definitely gonna be a walker." So when I first heard this, obviously I was overjoyed. BUT after we left the appointment, I told Stella that I wasn't gonna go light on the PT just because he said that. PT is not just once a week when her therapist comes over. It's all throughout the day. From having her crawl around and stretch, without her braces on, to standing in her "standing frame" twice a day. We do lots of work with her standing at the couch and doing "side steps". It's just a huge part of our lives. Her PT thinks she will be a walker (isn't that what they call the zombies in Walking Dead?), but we know this will take time. When she starts being able to cruise along the furniture, we will try out a pediatric walker. There are no guarantees about her future mobility but we will give her every opportunity to see what she is capable of. As of today, she is a FAST crawler. Shes in this transitional crawl where its a little better then an "army" crawl but not quite the 4 point crawl that most kids do. Just yesterday she went from a laying to sitting position, which is GREAT. She just freakin amazes us!!! Other then all that medical stuff she is just LOVE. She laughs all day long at her brothers and almost always has a smile on her face. I'm proud to say she is still nursing. Not too often, maybe 3 times a day, but it's still great we made it this far.She loves exploring, eating, and interacting with her brothers.

Other then all the kid related bragging, stuff is just good over here. Sam and I are working on using our spare time (what little of it there is) on productive stuff. His main focuses are writing and playing music. I am pushing myself to read everyday and try to spend some time for myself, even if it's just giving myself a pedicure or taking a long bath. It's just SO easy to spend every second with these kiddos, then after they go to bed, worry about housework, then catch what sleep I can. I gotta remember that I matter too!

My husband is just a rock star in this house. When I tell people that I'm lucky to have him and that he is so great... I'm not just saying it to be nice. He is encouraging, and honest, and always knows how to bring me back to reality when I'm asking all the "What if" questions. I need that because I am my own worst enemy. I sit, and stew, and question, and worst case scenario not just Stella but Roman and Finn too. I am a natural worrier. I can say it is getting better. I see happy faces in front of me all days long, so I must be doing something right.

Anyone else obsessed with The Lumineers Song "Ho Hey"? I love these lyrics:

I belong with you, you belong with me, you're my sweetheart
I belong with you, you belong with me, you're my sweet