Our Redirected Flight

Our Redirected Flight

Sunday, September 25, 2011


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.


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.

Monday, September 19, 2011

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!

Thursday, September 1, 2011

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!!