MRI

Grayden had his MRI last week to make up for the one that we missed while we were in Philly. We met with the neurosurgeon here in Grand Rapids to go over the results and all is well. He said that there is no evidence of a syrinx and that all looked good from his standpoint. There was evidence of tethered cord,but this is the case with all kids who have Spina Bifida and it is a wait and see as to whether it will become symptomatic or not. He also said that his brain looks good. The shunt is functioning as it should and there is no evidence of obstruction.

Zander is addicted!

We spent this past weekend  at Crystal Mountain with my dad and Karen for our Christmas with them. They rented a mountain top condo and we had one giant sleepover party with Robyn, Dave, Chase, Teagan, my Uncle Kevin, Aunt Terri, Elizabeth, and Jon. We had such a great time and are begging to make this an annual tradition. I love watching the four kids get to play and hang out as well as getting a chance to hang out with their older cousins who we dont see very often. The kids had so much fun and of course were so spoiled that I never thought I was going to be able to convince them to leave.

Zander and Teagan pushing Zander's new stroller

Zander and Teagan taking a break to watch "Mouse"

Zander getting ready to ski.

Grayden meets Santa

Zander sleeping on the couch with his snow pants on because he was afraid if he took them off he would miss his chance to ski again.

Christmas crafts with Aunt Robyn

One of the most exciting things about this weekend was that Zander got a chance to down hill ski for the very first time. From the moment we arrived at the condo he started asking "I go skiing?" I thought for sure that he would go down the hill one time and get his fill, but not this kid! He loved it. He went skiing three days in a row thanks to his cousins Chase andTeagan who so kindly shared their gear and thanks to Grandma Karen and Papa Jack who sacrificed their quads to take him on numerous trips up and down the mountain. He was a master at the chair lift and he absolutely loved the magic carpet on the bunny hill. By the end of our third day he was going down the bunny hill holding onto a hoola hoop with my dad's support. I was so impressed!

Zander meets Santa

Zander with Papa Jack, Grandma Karen, and Teagan skiing the bunny hill.

Little Artists

Christmas tree lighting and meeting Santa

I feel so very greatful that my kids are able to have so many amazing experiences. They will have priceless memories for a lifetime to come.

Standing

Althouth we are not totally encouraging this yet because we are still working on crawling on hands and knees and some quality differences, I wanted to share Grayden's determination. He is pulling to his knees everywhere and trying to stand more often.

Proud Mommy!

Yesterday was a first for me. Yesterday I sat on the parent side of a complete developmental evaluation. Yesterday I watched as my little boy blew the socks off the evaluators. We didn`t get "developmental levels" yesterday, but what we did get was so much better in my opinion. We got to hear a lot of positive comments anout what Gray IS doing, "wow look at the quality of his movements"' "I can't wait to see this kid when he is three" "his language and social skills are incredible", "I don't know what you are doing with him, but keep on doing it","he is doing great". As Grayden's parents we are well aware of the things he "should" be doing according to the scales and compared to his peers. However; we don't need to be bombarded with hearing about what he can't do. The most important thing to us is what he is doing and in what quality and going from there. Today that is just what we were told!

Yesterday was day one of our three day evaluation for Grayden's MOMS study follow up. The morning was spent with a developmental pediatrician who did an assessment as well another professional who completed the Bayley and Peabody developmental evaluation. Austin and I also had to complete some questionaires regarding our feelings and such and then Grayden had an xray to check for scoliosis of the spine. An interesting little tidbit that was confirmed during the eval is that Grayden reacted to sensation on his feet at all points but not on his butt. The pediatrician said his sensation is similar to kids with a lesion around the area of S1. Neither professional was allowed to know if Grayden was part of the fetal surgery group, they also were not able to know his lesion level. When we arrived we had to undress Grayden so that they could cover his scar completely just in case.


It is so fun to be back in Philly and to get to see all of the amazing staff at Chop. The emotions are so diferent this time around. Feelings of gratitude that we were able to be a part of this and that we are surounded and supported by so many professionals that are passionate about tyhe lives of people with sb and their families.
As we sat in the waiting room yesterday waiting to get to see some of the staff and as I looked around at some of the couples that were waiting I couldn't help but wonder if they were new parents to be of a child with an. I so badly wanted to go over to them and take away the pain and worry that was written all over their face. I wanted to show them Grayden and to tell th that their baby was going to change their lives inane wonderful ways. I'm so glad that part of our journey is over but do glad that we were able to have the experiences that we did.

The TABLE!!!

Once a month I am lucky enough to have coffee with a bunch of my friends who also happen to have kids with spina bifida.  Last month at coffee I was talking with the other moms about how it is starting to get difficult for me to watch as Grayden becomes frustrated that he cannot always keep up and play with Zander.  Grayden LOVES his big brother and is constantly wanting to be where Zander is and to be doing whatever it is that Zander is doing. Physically this is difficult for Gray though. Don't get me wrong he figures it out, but I can tell that he wants to be able to do more.  He HATES to be left out. 

So, a few weeks later my good friend Lauren posted this awesome table on her facebook that she and her husband created for their son based on inspiration from this amazing blog that we have been following.  It was an awesome table and I knew right away that was just what we needed so that Zander and Grayden could play together at the same level, both kneeling.  It is great for Grayden because he can practice pulling himself up into a kneeling position and go from kneeling to tall kneeling while playing.  They can also sit at the table and play as it is only 6 inches tall. 

Thanks to Grandpa Jeff, we now have a table just like Lewis'.  It is AMAZING. We love it.  It has been so fun to watch the boys play at it together.  Grayden is quickly learning how to get himself up to kneeling at the table as well as get himself back down. 

It has a cut out so that we can put different sensory bins and the homemade light box in it.  This thing is awesome!! We are already having so much fun!

Today we played with blue water beads on top of the light box.  The boys loved it. Grayden sat there and played for over an hour. He was so amused and every time I tried to take him away from it he would cry. 

Yesterday, I caught the boys playing with the magnet balls/sticks together at the table too!

Thank you Lauren and Coleman for the idea!

Thank you Grandpa Jeff for so quickly fullfilling our wish and making us the table!

Thank you playathomemom3@blogspot.com for inspiring me to PLAY!

Face of Spina Bifida

A few of the other moms I have met online have been featuring kids on their website as a way to introduce the world to all the amazing people who are living with Spina Bifida. Today Grayden was featured on one of them. Go check him out at www.themclellands.blogspot.com, and check out all of his other buddies as well!

Spina Bifida Awareness Month

"This isn't good, I have some really bad news for you" This is exactly how we were told that our second baby boy would be born with Spina Bifida. I will always remember how we were told, the sinking in my heart, the immediate worry and sorrow. I love our OB but I really wish the news had been delivered differently. I have met so many other families who share this experience with me. We all remember that day like it was yesterday. We remember the exact words, the despair, the grim diagnosis. What none of us remember being told in that moment, that vulnerable moment, is that we would be having beautiful babies that may have special challenges, but that would be so much more similar to other babies than they are different. We weren't told that our baby would change our lives in so many unimaginable ways. We were given "really bad news" unfortunately by doctors who are excellent at diagnosing Spina Bifida, but not so excellent at knowing the kind of amazing lives these people live. It is my wish that through awareness, we will change the future of that day. That more doctors and medical professionals will gain greater awareness of what it means to be an individual living with spina bifida, so that when they are in the position of telling excited, soon to be parents of this diagnosis that they can send a message of truth, a message of hope!

This is not "really bad news", this is one of the brightest lights in my life!!

Hydrocele

What started as an ordinary day on Friday quickly changed. Have I told you that is one of the biggest things that I hate about Spina Bifida?
 Our day started the same as all other days, where we run around the house like crazy getting ourselves and the boys ready and getting the four of us out the door before 7:30. I dropped the boys off at daycare and went on to work. A half hour after I got to work I got a call from Kristy saying that Grayden was acting somewhat fussy, had a low grade fever, and his right testicle was swollen.  As soon as I got off the phone I started texting my SB mama friends about what they thought this could be and asking their opinion of who I should call. Was this a situatuation where I should skip the pediatrician and go immetialy to the specialist or was I overeacting. The consensus was that I should call his pediatrician to start and then go from there. We were able to get an appointment by 10:30.

As soon as we got to the doctors and as I took Grayden`s diaper off to show the doctor, I could immediately see what Kristy was talking about. The doctor took one look and did some palpation and determined it was a hernia. She described this to me as being part of his bowels coming down into the scrotom. She said it was not an emergency because she could easily push it back up, but she said that he would need it operated on to correct it. She also said that it was not neccesairly related to the Spina Bifida and that this is somewhat common for premature infants and especially males. So basically Grayden has three strikes against him if you include SB as a risk factor as well. She then made us an appointment with his urologist for the following Tuesday and sent us on our way. So of course I immediately start feeling guilty, like somehow I could have prevented this. Is this happening because I am not keeping his bowels soft enough? Why didnt I notice this sooner? etc, etc, etc.

Once we got home, I changed Grayden`s diaper again and he started screaming like he was in pain. I decided I was not comfortable waiting until Tuesday to speak with the Urologist so I called and begged them to squeeze us in and much to my surprise they did. I may have exaggerated just a bit to get what I wanted, but I really dont care.

The Urologist took one look at Grayden and stated that he believed that what he was seeing was actually a hydrocele. He e/plained that this was the most mild form of hernia. It basically means that extra fluid is somehow leaking into the scrotum and surrounding the testicle. Because Grayden has a shunt that drains extra cerebral spinal fluid into his abdomen the pressure more than likely caused a leak. He agreed that it would need to be surgically corrected. So we scheduled surgery for October 3rd.

So, as you know by now, I hate not being armed with knowledge to make the best decision possible. It is somewhat sorry to say, but I second guess things a lot, especially doctors. So I started googling as soon as I got home, which I probably should not do, because I`m pretty sure they put worst case scenarios in the top of the search. So needless to say, when the doctor asked me Friday, when I didn`t even really know what a hydrocele was, if I had any questions, I didn`t have many. But now I have tons!

I hate the idea that my little Gray will have to undergo yet another procedure. This will mean sedation for this surgery and then again in a month for the MRI in November when we are back inPhilly for ourf 12 Month follow up.

Grrrrr.

On a positive note, we had our Spina Bifida family over for a dinner party on Saturday night. There were 14 of us total and we were missing some of the clan, but we had a great time. Austin and I were again reminded of how lucky we are to have such an amazing group of people to travel with on this journey. Sometimes its just so nice not to have to say anything and to know that they just get it.

Happy First Birthday Grayden!

My sweet Grayden, I cannot believe you are one year old already. You have made such an impact in our lives in just one short year. You have made us better people. You have made us appreciate life and take a moment to slow down and appreciate all the little things. You have taught us that life is not always easy, but there are always positive things that come along if you are patient. You have taught us, me especially, that you cannot plan everything. However; even when life takes you down roads you weren't expecting to travel, those roads still bring you to amazing places.

 Grayden, you are a determined little boy who is going to do amazing things. You are one of the happiest little boys I know. You love to smile and you are so social. You will wave at anyone and who can resist smiling back at you. You love to perform for attention. You give high fives and clap. You are pulling yourself forward all over the place with your modified army crawl. You can sit by yourself and get down from sitting all by yourself. You also love to rock on your hands and knees and dance to music. You don't like missing out on anything or feeling like you are being left out. You love to eat, especially fingers foods. You love to play and you just started putting objects into containers with really good accuracy.

Grayden, you are loved by many and you have added so much to our family. We love you to the moon and back!  Happy birthday sweet boy!

Two Tricks in One Day!!

I have been trying to get Grayden to clap for the longest time now.  Up until today he would put his hands together if I asked him to clap; however he would keep his hands fisted or he would bang two objects together.  Well today, out of nowhere he started clapping while we were at therapy.  We weren't even prompting him and now he has been doing it all night!!

I guess he didn't think the clapping skill was good enough for today, so he also learned how to get himself out of a sitting position.  Anat always talks about how the most optimal movements are those that are reversible and if you can go one way, you should be able to go the other way with ease. Although, he should really get into sitting before he learns to get out of it, it is still fun to see him do this because I'm hoping it means getting into sitting won't be far behind!! (Also, I don't put him in sitting very often because we really try to keep him in positions he can get himself into, but he learned how to do this anyway!)

And this one is just for giggles.  I can never have enough of those!!

Annual Stroll N' Roll in West Michigan

This year some of our amazing friends, Leigh and Emily have organized the first ever West Michigan Stroll N' Roll.  The goal of the Stroll N' Roll is to raise money for the West Michigan Spina Bifida Association.  We are forming a team and naming it "Grayden's Gang" and would love to have as many people as possible join us for the walk to support our amazing little man and all the other wonderful kids and adults we have met that are living with Spina Bifida. 

Whether or not you are walking if you would like to donate to our team click the link at the top of the page or Here. Those links will direct you to our WePay site where the donations will be collected for Grayden's Team.  We are also in the process of designing a T-Shirt for those of you who would like to join us for the walk and will let you know as soon as we have them complete.  We are guessing that they will be around 10 dollars each.  This is the design as of now; but we still may tweak it some.  Thanks to Brad Goff for the scooter graphic!

The walk is being held on October 15th, starting at 10:00am at Millenium Park in Grand Rapids. 

Family Vacation and Welcomed Home to Great News!

Not the best family photo,  but I can't get some of the better ones to rotate so this will have to do.

Sink baths are the best



We took a long weekend to spend some time as a family of four, (plus my dad and Karen for a few days) and headed up north to my dad and Karen's cabin to spend some quality time together.  We had such a great time relaxing by the lake, taking boat rides, hanging with the boys, and "hiking" at Pictured Rocks. 

 

We returned home late Monday night, because we had a full day of appointments scheduled.  Both boys had therapy appointments and Grayden also had an appointment with his Physiatrist (Rehab doctor) and Orthopaedic doctor.  These appointments brought me some anxiety, because as some of you may have heard me talk about before, Grayden has a pair of AFO's (ankle braces) that he is supposed to wear to "stretch" his ankles at night while he is sleeping.  Since we had the AFO's made I have questioned their purpose because the angle in which they are "stretching" his feet is an angle he can get his feet into on his own.  Also, with the Anat Method, the philosophy is more to let the child move and explore without inhibiting movement so that they are exposed to different sensations and have the ability to improve upon what strength and movement that the child may have.  This is not to say that they never suggest the use of AFO's, but it is not as widely recommended as in the more "traditional" model.  I whole heartily believe this to be true for Grayden right now, that if he were put in an AFO it would decrease the chances he has to move and develop strength; however I have also been very torn about this because my therapist mind keeps saying "but he is holding his feet in a poor position and you don't want the bones to form around that, or for range of motion to decrease, etc, etc, etc.

So, needless to say, Grayden has not worn the AFO's and as you can see from the above picture, he does not always hold his feet in the "best" position and I obsess a little about this. However, he has not lost any range of motion so I have continued to trust my instinct and have not put them on.  I really thought I was going to get an earful today and that I would have to explain my reasoning and justify why I chose this route; however, much to my surprise- I will quote the doctor today, "You went against the grain and the recommendation, however it seemed to have worked and I don't see any reason why Grayden should be in an AFO at this time. Keep doing what you have been doing. He looks great!!" 

Music to my ears. 

This does not mean that this will be the case always, but for now it is one less thing for me to have to constantly have to think about and question if we are doing the so call "right" thing. So I'll take it. 

In other news, can you believe that we are starting to plan a certain some one's ONE year party?  Crazy how time flies.

Who would have known a year ago...

It's been a year since Grayden and I were undergoing surgery to repair his lesion on his back.  Wow one year!  I can't believe it's already been a year.

A year ago as my mom, Austin, and I walked from the hotel down to The Children's Hospital of Philadelphia my mind was racing in a million different directions.  I was scared out of my mind, but also very thankful that we were allowed the opportunity to participate in a surgery that was opening the door to a possibility.  It was the most difficult decision that I have ever had to make in my lifetime thus far.  I was so worried about Zander at that time and remember him being my primary concern.  I was so concerned about what our life was going to be like and how all of this was going to impact his life.  As I was wheeled into the operating room I was so extremely sad for Zander, feeling like I was going to miss out on his life and worried his life was going to be consumed by Grayden and everything that came with him; and on the other hand I was feeling like we were doing the best thing possible for Grayden.  I was so torn.  I was so worried about being away from home, being away from my friends and family.  In a way I was being selfish because I kept thinking "this is going to ruin my summer".  I also worried about the extreme.  "What if we didn't make it through?, What if Grayden is faced with extreme prematurity and has to deal with that on top of SB?,"

A year later as I reflect back on what the year has brought to us.  I can tell you without a doubt that we made the best possible decision for our family.  Philadelphia and the surgery brought unexpected benefits.  We got to spend such quality one on one time with our closest friends and family.  I have always had a strong relationship with my parents; however if it is possible we became closer.  And as for Zander, he did not lack for attention and he was allowed experiences he would not have been otherwise.  He may not remember them, but we have vowed that we will travel to Philadelphia often so that he can grow to love the city that holds such a dear place in our hearts.  The summer of 2010 was one of the best summers of my life.  I can tell you that last year at this time, I would not have ever guessed I would be saying that.  Surgery was difficult, but I recovered well and fairly quickly and the bed rest that I thought would be unbearable was not as bad as I thought. 

I will always be forever grateful to all of the mothers who went before me on this journey to help me make my decision.  I can't say without a doubt that I would have made the same choice if we were #10 versus #175 in the study.  I will also always hold a dear place in my heart for the staff at CHOP and the care that we received there.  From the moment we walked through the doors until the minute we walked out with Grayden in our arms we received top notch care and always felt as if they were taking care of us as if we were their own family members.  One of the biggest differences we felt there was that they truly opened the door of possibility.  Even though, they had numerous families coming to them in the same situation with the same diagnosis we were treated as individuals and as if we were the only family they were working with at the time.  We never felt like we were placed in a box, the box of "L4 Spina Bifida diagnosis; therefore we do A, B, C." Grayden will write his own story of what he will do. This is Grayden's journey and I'm excited to travel it with him as he paves new paths. 


A little clip of Grayden "exploring". Of course, he will never show off all of his tricks when I get the camera out, but it shows you a little glimmer of how he is getting around these days.  He is rolling like crazy and starting to pull his knees up under him while he is on his tummy.

For those of you that missed this on facebook, Grayden discovers his waving hand.

Grayden truly brings us joy every minute of every day.  A year ago we wondered what our life would be like with him in it, a year later it is impossible to imagine what our life would be like without him!! 

Busy

We've been very busy this summer.  So busy that I have somehow misplaced my cord to transfer pictures from my camera.  I have been wanting to post; however I can't find the stinkin cord so I was trying to hold off, but I guess I will just have to post pics later.

At the end of June I decided to continue the training for the Anat Baniel Method and headed out to California with Grayden in tow, thanks to my moms generosity of being willing to tag along.  I had a great time, learned a lot and met some great people.  My mom and I were even able to explore San Francisco and the surrounding area.  We had a great time and I am overall very glad that I went.  Anat is brilliant and I love learning from her.  I swear I could listen to her for hours maybe days and never get bored.

Last week we had the opportunity to travel to Chicago to have Grayden work with an ABM therapist who works hand in hand with Anat and is also one of the trainers for the professional training program.  I feel like it was a great opportunity for Grayden, but I also have to say that she did very similar things with Grayden as his therapist here.  So mostly, for me it validated that we are working with an amazing therapist here who is allowing Grayden many possibilities. 

We spent the 4th of July holiday in the Upper Peninsula of Michigan at my dad and his wife Karen's cottage.  We had a great time and to top it off, Grayden began pulling himself forward while on his stomach (just a little bit, but I'm counting it!).  He is also very close to getting himself into a sitting position.  He is also constantly on the move, by rolling everywhere.  His first tooth is also poking through so it won't be long before its completely here.

Other than that, we have been busy enjoying our summer! I promise to post more pics and updates as soon as I find that cord!

If you have the time, please check out this post from another SB Mama.  It's a touching twist to a common poem in the "special needs world"

http://fourpotters.blogspot.com/2011/07/postcards-from-holland.html#comment-form

Amazing

Someone at CHOP created a video of a lot of the kids who were participants in the MOMs trial at CHOP as a way to say thank you to the staff that have changed all of our lives.  The video is amazing and I wanted to share it for those of you interested.  I'm hoping this is okay:)

CHOP Video

the password is: cfdt

Hope you enjoy it as much as I did! 

One Year Ago

One year ago, I slipped out of work a bit early to meet Kelly at Dr. Lagrands office to find out the sex of our new baby.  There was some excitement and anxiety building around the discovery, I know Kelly was hoping for a girl and I was leaning a little that way myself, so that I could have more leverage when it came to saying 2 kids is enough!

When the ultrasound tech said, "it's a boy!", there were mixed feelings; however, none of the feelings would compare to our emotions a few long moments later, when Dr. Lagrand came into the room and said, "We need to talk, this baby has a spina bifida."  "Woah, what?  What's that?"  I had heard the name before but had no idea what it really meant.  One thing I did know however, was that life would probably never be the same again.

The next few weeks were filled with research, sadness, dispair, and very tough choices.  Should we go forward with the pregnancy, or not?  I know for me, the one big question was, will the baby have good cognitive ability? It wasn't just a choice for my own welfare, but we had to consider the baby's welfare, Zander's life, and the family's.  It seems so long ago now, but I know there were many hard days.  I kind of let myself go, started not caring about some things, gained a bit of weight, drank a lot more.  I felt like I needed to "live-up" the next few months before the baby came and our life was forever different.

In what may be one of the very few, lucky breaks, I feel I/we have ever gotten in my life, Kelly's dad passed along some information about a MOMS study.  It took several weeks of research and screenings, but we were invited to Philadelphia to have a chance at partcipating in a landmark study investigating the differences between prenatal and postnatal repair of myelomeningocele.  After Kelly went through all the tests and interviews, we were told we could participate.  Somehow, we were randomly selected to have the prenatal repair.  I knew the summer was going to be a whole lot different than planned.

An experience we never thought we would have, Philadelphia was great.  We had awesome support from our friends, family, and co-workers that allowed Kelly and for a big part, Zander to stay in Philadelphia as required by the study.  I was able to spend several weeks at a time throughout the summer in Philly to see Kelly and Zander.  We did a lot of fun things, the Art Museum, Children's Museum, Franklin Square, Delaware River, Smith Playhouse, Reading Market, Eagles Game, Phillies Game... I could go on and on.

September came and Grayden William Goff was born.  A little early, but thanks to the great staff at the Children's Hospital of Philadelphia, Grayden was well on his way to where he is now.  Grayden is awesome, always smiling, rarely crying, kicking and moving his legs all the time, rolling over, cooing/talking, and so many other things that baby's do.  I know he has a positive outlook already on life, and he will try his hardest to keep up with Big Brother Zander and do all the things our family likes to do.  It is crazy being a Dad of two boys, but I think everything we have done in the last year has been worth it.  Like any parent, I will probably always worry, but life isn't that much different than it used to be.  I am looking forward to many more years with Grayden, Zander, Kelly, (and yes, probably one more) ,jope!

Mommy Moments

These are the moments.....

As I was getting ready the other day, I overheard a familiar giggle.  I walked in just in time to catch this on video.  These are the moments that make my heart smile!!!

PS (nevermind the mess of the house in the back ground.  Lets just say I was too busy enjoying my moments being a mom to clean:) )

Torn

Ever since I was little when people would ask me what I wanted to be when I grew up I would always answer by saying that I wanted to be a mom.  Of course as I got closer to adulthood I continued to want to be a mom, but also knew that I needed to be an independent woman and that meant finding a career.  After changing my major about one million times, I finally decided to become a Child Life Specialist and then finally an Occupational Therapist.  I was lucky enough to land my dream job immediately following school and have worked in Early Intervention ever since.  I absolutely love what I do and feel that I am doing exactly what I was meant to do.  It just fits me.  However; ever since having Zander I have constantly felt torn about working full time, and now that I have Grayden I am feeling even more torn.  I want to have a career and be a successful woman who can support myself and my family; however I also have a constant desire to be home with my boys.  I don't want to miss out on all the fun stuff that is happening with their little lives.  I don't want to ever look back and regret not being there.  We are very lucky in the fact that the boys attend an amazing in home daycare center where they are receiving the very best care from one of my friends Kristy; however it is so hard for me to know that they are with her 8 hours out of the 12 hours that they are awake during the day.  So, that means if you subtract the time it takes me to drop them off in the morning and pick them up in the afternoon I get a total of 2 hours with them during each week day.  I am lucky though, because I do get many breaks during the school year and summer, where I have weeks at a time to spend with them, but during the times when I am working many weeks at a time I am finding it very difficult. 

I'm not sure if it is going from one child to two that has made it harder this year, or it is the fact that Grayden has special needs, but I am really feeling torn this year.  So my wheels are constantly ticking about how things could be different, what we could do to make life a little easier.  What makes it hard is the not knowing.  Not knowing how much "extra" stuff Grayden is going to need or how much extra time that it will take.  This year has been pretty full of doctor's appointments and lots of running to and from daycare for appointments.  I am told that the doctor's appointments will slow down as Grayden nears one year in age; however I have a feeling that the intensity of therapy may increase as he begins to get near being upright and mobile. 

I, in no way mean for this post to be a sob story or a pity party. I feel very lucky to have my career and my children and I know that we could probably arrange it as a family for me to stay home, but that is the constant dilemma when you love what you do, but also don't want to miss out on anything with your kids and constantly feel like you need to do it all.  These are just the thoughts of a mom who is trying to figure out life as a working mama to two boys, one who happens to need a little extra attention. 

Alternate Thinking

When we first found out we were having a baby with Spina Bifida we were in all honesty, devastated.  Little did I know that Grayden was going to change my life and my way of thinking in so many positive ways.  Not only have I met the most amazing people and friends, but I am also growing professionally and learning new things everyday. 

For the last few months Grayden has been going to therapy twice a week at a place in Grand Rapids, called B.R.A.I.N.S, where he works with a PT named Renae.  I met Renae about 3 years ago when I consulted with her regarding a child I was working with at the time that I was feeling "stuck" with.  She came out with me on a home visit and worked with that child, and following her session with that child we noted great progress.  So upon hearing that I had a child who has Spina Bifida I was reminded by a friend, of Renae's work in the Anat Baniel Method and it was suggested that we try it. 

I cannot tell you how glad I am to have reconnected with her and to have been reintroduced to this work.  The Anat Baniel Method is very different from what traditional therapy looks like and from much of what I learned in OT school.  The focus of this therapy is really about Brain Plasticity, which means the brains ability to constantly change and form new connections.  For Grayden this therapy has really been huge. This work focuses on connecting the body and the brain (somewhat similar to sensory integration techniques; however in a different way than what I have learned), and with that body awareness, utilizing movement and movement patterns to allow maximal function with less effort.  I feel that Grayden has benefited from this therapy in so many ways.  With this work Grayden is learning to move around his ABILITIES versus around his disabilities. This therapy looks much different than traditional therapy because it is working with the child where they are at developmentally versus placing them in positions that they are not doing and having them "work" in what is hard for them.  This has been VERY different than what I am used to.  I have always learned to work the child's muscles by placing them in the mulitple positions over, in, or on different equipment.  Instead Anat Baniel Method works with the child while in positions that they are comfortable with and by focusing on the amazing things our human brain is capable of. 

So needless to say, I am enthused and excited about this new therapy.  So much so, that I am now beginning the professional training so that I myself can learn how to do some of this work.  After attending a weekend training with my some of my new friends and some coworkers, I walked away so intrigued that I just need to learn more. 

I am learning that when raising a child who has special needs you are often advised to do so many different things.  Everyone is constantly telling you to do what they think is best.  Even with my background in therapy, I find myself second guessing a lot of what I am told by the so called professionals.  It is hard not to feel constant guilt about whether or not you are doing the right thing for your child or heaven forbid missing out on something that you should be doing or trying.  Sometimes, the information we receive is even conflicting from one professional to another.  I am learning though, to do what I feel is best for Grayden based on the information that I know at the time.  At times, this may mean doing something outside of the so called norm. 

Right now, I feel like we are at the best place for us and for Grayden.  Sometimes, being a mom means trusting that you know best for your child, and not always doing things just because that is what you are told to do. 

Little did I know, that my little guy was going to lead me down so many new paths in life.  Unexpected but unbelievable!!

Rolling, rolling, rolling

Grayden has been rolling from his stomach to his back for a few months now, and today while celebrating Easter with our family, he decided to roll from his back to his stomach multiple times.  He had a lot of encouragement from his awesome cousins this weekend and we are so happy that we were able to share this moment of "firsts" with our family!  I am such a proud mommy today!!

Happy Easter from our family to yours!!

Then and now

Then

Now

Someday he wll probably kill me for posting pictures of his adorable little behind, but for now I think it is pretty amazing!

HOPE

CHOP is a place that will forever hold a special place in our hearts.  He finally fits the shirt we bought him while we were there!  It truly is a place of hope!!

Happy Golden Birthday Zander!!

Two years ago today my life was forever changed as I became a mom for the first time.  I can't tell you how much I love my little guy and how much he has added to my life.  He has such a fun loving personality and he brings something new to life every single day. This year has brought so much change to our family and he has taken it all in stride.  He is the best big brother to Grayden and he has such a caring spirit. I love having the privilege of being his mom!

Zander is just like his daddy and he LOVES to cook so we decided this year to theme his birthday party around cooking.  We invited some friends and family over to help us celebrate.  The kids had a great time decorating their own aprons and making their own personal pizzas.  They also LOVED the rice table with cooking utensils as evidenced by the mounds of rice that we cleaned up following the party.  It was completely worth it though because Zander had soooo much fun at his party!!  I can't believe it has already been two years.  They are kidding when they say time flies!!

Second attempt at AFO's

Grayden had an appointment on Monday to be casted for the third time for a pair of night time use AFO's (ankle foot orthotics).  The doctors think that although he seems to have good ROM and movement he is slightly limited in his plantar flexion ROM (pointed toe) so they believe it would be a good idea to put him in AFO's at nighttime to stretch.  He was previously casted back in November and technically received his first pair back in December; however I did not like the quality of the AFO or how his foot/ankle looked in them so he never wore them.  The physiatrist also did not like them when he saw them so we attempted to get a new pair made in December; however because of insurance issues we were not able to get them.  I offered to pay for the second pair so that we wouldn't have to wait, but believe it or not, those puppies cost 1500.00 a pair so there was no way I was about to drop that much money on something he would outgrow in about 2 months.  Also, with the new therapy we have recently started (Feldenkrais-more to come on that later), I have been second guessing the use of the splints anyways so I really didn't mind waiting.

Preliminary Study Results

We received an e-mail today from the Study Coordinator at CHOP with a newly published article from the chief surgeon of the study with the preliminary results of the study.  The MOMS Trial has concluded early, after 183 (instead of the planned 200) women enrolled to allow women the choice of having prenatal surgery due to the benefits that were seen in the preliminary outcomes.  The results look very positive regarding the prenatal surgery.  I can't help but feel a little sad that we weren't in the percentage that had improved outcomes with the decreased need for a shunt, but I am still feeling very grateful to have been/be a part of this study and to have been chosen for the prenatal surgery. 

There was also an article published in the NY Times today as well as a segment on NPR if you are interested in reading/watching them.  They also did a segment on the Nightly News and will be airing a segment on the Today show tomorrow morning (Thursday).  I am just hoping that with all this press, that the impression is not given that this surgery cures Spina Bifida.  Grayden has Spina Bifida and will always have Spina Bifida.  He will still face challenges in his life that he will have to overcome.  We are hopeful that the surgery helped to maintain some function that he may not have otherwise had; however only time will tell.  Surgery or no surgery we expect him to do great things. 

I am hoping that this study is just the beginning for the research that they will continue to do on Spina Bifida.  So much more needs to be done on the prevention and treatment of this very common birth defect.  Grayden and all of the other amazing kiddos we have met with Spina Bifida will do amazing things in their lives, but I know if we parents had the choice, we would prefer that there was no such thing as Spina Bifida.  I am glad to have been part of something that will hopefully continue to change the future for these kids.  It was a huge sacrifice, not without its complications but totally worth it. 

I love this little laugher sooooo much!!



The Story of the Shunt

A good luck kiss from my big brother!


Daddy loading me up


In the preop room watching the fish tank and waiting to go into surgery.



Sleepy from surgery

A little over 24 hours later and we are home!! (don't know if you can see it but his fontanelle is already sinking in quite a bit, also it is becoming complicated to get a picture without big brother wanting to be in it too:))

A side view of the shunt

Grayden did amazingly well with his shunt surgery. He was taken back into the operating room around 8:50am on January 26th and was finished and in the recovery room by 10:15am. It was one of the most difficult things that I have had to do thus far, sending him into the OR and trusting in the neurosurgeon. He slept most of that day and the few times he did wake up, he woke up crying and you could tell he was in pain. We provided him with pain medication for the entire day and through that first night. The next morning, however, he woke up happy as can be, with a big smile of his face! We were discharged and sent home around 11:30 on Thursday. Grayden spent the next day at home with Grandpa Jeff and continues to amaze me with how well he is doing. He has been smiling and giggling a lot!! So now we just wait and hope that things continue to go well. We are hoping for no infections and for the shunt to be problem free.

If you are interested in seeing a diagram of what a shunt looks like and where it is that it is placed, follow this link.

http://www.ucdmc.ucdavis.edu/cancer/pedresource/pedres_docs/VentriculoPeritonealShunt.pdf

Wow

What an emotional day. I am literally exhausted. I had mentally and emotionally prepared myself for Grayden's surgery today, even though it is the last thing in the world that I want for him. Shortly after we arrived at the hospital however; we were told that the surgery would need to be postponed because Grayden had a low grade fever. Don't get me wrong, I was a little relieved that he would not be having surgery, but knowing that he still needs doesn't let the relief last long. I have this false sense of hope that maybe when we go back they will somehow decide that he doesn't need one after all. Maybe it is my lack of sleep that is causing me to have unrealistic dreams. I am emotionally drained and so very worried. Worried that somehow in some way what I do is going to affect this whole shunt ordeal, when realistically I know it doesn't really matter. I guess I just keep dreaming that somehow I can change the outcome.

Sorry about the babbling, just feeling totally overwhelmed.

Let's pretend that airplanes in the night sky...

Are shooting stars. We could really use a wish right now, a wish right now.

This is the song that was on the radio as I pulled out of the parking lot of the neurosurgeons office today. How appropriate. Today our wishes would be:
1. Please let the neurosurgeons hands work as brilliantly as they ever have on Monday morning as he is placing a vp shunt into our little Gray's brain.
2. We wish for a fast recovery for Grayden with no infections following his surgery.
3. We wish for strength for mom and dad and grandma's, grandpa's, aunts, uncles, cousins, and especially big brother as we wait for the surgery to take place and be complete.

This is not the road we wanted to travel. This is what we most wanted to avoid. But this is what we know-that little tube will save our little guy's life. It is what he needs at this moment because the fluid in his brain has reached levels that are or will be soon, creating too much pressure on his brain as it grows. We are thankful that a shunt is even a possibility. We are thankful for modern medicine. We are still very thankful we were selected for prenatal and truly believe that it has given Grayden the chance he needed to grow and get stronger to prepare for this surgery. Prior to having the prenatal surgery we were given a 95 percent chance that he would need a shunt based on what the doctors saw on ultrasound prior to his birth. We had hoped with the prenatal that we could avoid this, but it was not meant to be. WE are still so thankful and we know that Grayden is a strong little fighter.

Please keep us in your thoughts as we struggle to prepare for Monday.

We could really use a wish right now, a wish right now (or two or three).

We love you to the moon and back Grayden!!

Back to Reality

Austin and I just returned from a much needed couples weekend away. We spent the weekend up north, just the two of us cross country skiing and relaxing. We both felt that it would be good to get away and spend some together time to focus on our relationship. With everything that has happened this past year we have not had much time to spend with just the two of us and it was so nice to have the chance to catch up with each other and to focus on one another. We had a great time and the weather was beautiful for skiing. A big thank you goes out to my mom and Jeff for taking such good care of the boys while we were gone!

As the weekend draws to an end however; we are faced with a big jolt back into reality tomorrow. Grayden has his monthly head ultrasound and neurosurgeon appointment. I am feeling very anxious as the time gets closer. I know that my worries will not change what I will be told tomorrow, but I still can't help but feel nervous. I dread the news that we may receive, but am also trying to think positive thoughts. Ahhhhh, it just feels impossible.

We also have four other appointments tomorrow; including an evaluation with a new Physical Therapist who practices Feldenkrais therapy. We are very excited to hear what she has to say and are excited for Grayden to start with this intervention. Thanks again to all of you who have supported us through Gearforgrayden.blogspot.com for helping us to fund this alternative therapy!! Your support is so appreciated. Grayden also has his four month check up as well as his in home PT appointment tomorrow. I figured if I had the day off, I should cram as much action as I could into one day. We are going to be very busy!!

Grayden continues to grow each and every day. I swear he is trying to catch up with his big brother. He is smiling and cooing a ton as well! He still needs to improve his head control when he is on his stomach, but he practices a lot and is getting stronger by the minute.

Zander entertains us daily and can always make us smile no matter how we are feeling. He is also learning every minute and we get such a kick out of watching those wheels spin. His language is coming along, even though Austin and I are probably the only ones who can really understand all he says. He is such a caring big brother and is constantly wanting to help us out with Grayden. I really have to keep my eye on him because he thinks he can lift Grayden up and he is constantly asking to hold him. He is also just beginning to get a little more jealous. Hopefully, it is a phase that will pass quickly.

So we are asking for positive thoughts tonight and tomorrow!! We have high hopes that Gray can continue to avoid the need for a shunt, but ask for strength if that is the road we have to travel.

Stay tuned...