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