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!!