Sunday, December 6, 2009

When is it our turn?

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown

We have always kind of known there was something different about Keegan, from the moment I first saw him in the NICU I knew he didnt "look" like other babies. I think we tried to tell ourselves that it was just a bunch of little "coincidences" that all happened to him, but as the weeks have drawn on we have come to the realization that is not so.  Let me skip back in time for just a moment:

October 9, 2009 we headed north to Riley's Childrens Hospital in Indianapolis. We thought we were just going for a follow up for a few minor things he had when he was born: larger than normal head and weight, in uterine stroke, and multiple digits. All of our tests and reports had been forward to the Neurogenetic Clinic. When we got there we spoke with a neurogenetic counselor for awhile. She asked us all sorts of questions about our prenancy, our famiy histories and about this precious 2 and half week old that we were just begining to form a relationship with. He had only been out of the NICU 3 days when all this started to happen.  After Abby, our counselour was done, Dr. Walsh came in a did a physical evlauation of Keegan. We really had no idea what he was doing and quite frankly we were scared as hell!  All the while, Dr. Walsh started to talk about a genetic syndrome called Simpson-Golobi-Behmel. He has a few of the more prominent markers for it including a larger than normal head circumfrence, he was larger than normal (especially for a premie) at birth, his eyes are a little wider spaced than most babies, and his nose bridge is flatter than normal.  Dr. Walsh explained to us that he suspected Keegan of having this overgrowth syndrome and that there really wasn't a test for it.  We left there feeling more empowered than we had thus far, the NICU doctors really didn't help us a whole lot, they performed every test under the sun but we never really got concrete answers.

Fast Forward 6 weeks. On Monda November 23rd, 2009 we had a follow up appointment in Dr. Walsh's office up a Riley.  We were seen by a Nurse Practioner named Sara. She asked us some of the same questions asked last time, more questions about his developement-what he was able to do and what he wasnt, and about his general well being. She did some tests on his ablitiy to hold up his own head and took a look as his naked, and might I add cold, little body. She was worried about the lag with his head when pulled from a laying down position. She suggested we call First Steps of Indiana down in Vanderburgh County when we got home. She was also worried about the vary large soft spot that was still open in the back of his head and a hernia that has developed around his belly button, both of which will need surgery if they don't clear up. She wanted a follow up CT of his head and an ulstrasound of his belly done when we got home. After the appointment she sent us down to the lab to have his blood drawn, at the time we had no clue what they were drawing his blood for.

We got home that evening and felt pretty good about our trip. Nothing that can't be handled. I called First Steps of Indiana the next day and scheduled a meeting for Wednesday December 2nd for an intial consultation. The rest of the week flew by pretty fast. Some of my family and some of Ryan's family came in town for Thanksgiving and we had the meal for around 20 people at our little 1200 sq foot home! It was a blast though and Keegan got to meet some of his Great Aunts and Uncles and his Great Nana.

The first week of December started pretty uneventful. Keegan went to Amanda, hosue for the first time and got to know Ella and Jamison, her two little ones. By Wednesday I was ready for the weekend. I left work around 10:45 am to head to the First Steps office. When I got in my car I checked my phone for missed calls. Sure enough I had missed one and had a voicemail waiting for me.  After listening to the message, I placed a call to Riley right away to talk to Sara, our nurse practioner.  She had gotten his blood results back. It turns out Keegan as measuring in a critical area for the AFP test (a test for tumors).  She asked me when our CT and ultrasound were scheduled. I let her know it was scheduled for first thing on Friday. She said she would do her best to obtain those results quickly and let us know what they said. She proceeded to tell me not to be too alarmed although she probably would be if she was me.  I replied, "yea I am kind of freaking out!" - Which by the way I was! 

The First Steps meeting went very well. She gathered information about our little family and the obstables facing Keegan. She then shared her own personal story with me about her two boys that were born with genetic syndrome. Although it didn't keep me from being scared sh!tless, it did help me realize that even though this a mere bump in the road, we will get through this. 

After the meeting I phoned Ryan at work and shared the bad news with him. He got just as upset as I was but assured me that everything would be okay. I then called my mom, dad and sister in law Toni.  Everyone shared their sorrow and told me to keep my head up, we have not had our CT yet.  I got back to the office and no sooner did I get in the door than I started bawling again and ran to Laura (my bff in the entire world) and began to cry harder. Why did my little man have to go through this? What did we do that should have been done differenlty? It is still hard for me to wrap my head around......

The next 2 days are a complete blur. I didnt eat much and really didnt smile much. It is hard enough to raise a child in today's society but I was and am completely scared of raising a special needs child. On Friday morning December 4th we loaded our little starving man in the car and drove to Midwest Radiologic Imaging. We waited for what seems like hours, although with a screaming and very hungry 2 month old it would have felt like forever regardless of where we were. He had his CT done first and Ry got to stay in the room with him. Ryan said he fell asleep in the little holder.  We then went across the building to where they perform the ultrasounds.  It was then another 30 minute wait. When we finally got called back to the room we were very anxious. I was scared to death a tumor would just pop right up on ultrasound and we would be admited to the hospital right away. But that is not how it happened. Ry help Keegans arms and keep his Glow worm glowing and singing the lullabies while I rubbed his little legs and feet to keep him calm.  He did very well and the tech was able to get all the measurments and things she needed. I did have to tell her about the 2nd gallbladder that he was diagnosed with in Utero and she commented that she didnt see it.

The next couple of hours seemed to drag. I knew Sara would be calling that afternoon so I was just waiting to here "All I want for Chrimstas is you" by Mariah Carey, its my current Unidentifed caller ringtone :) Around 1-1:30 she finally called. She said they didn't see any tumors and that she was going to take it over to gastrointerology to have them take a closer look and that it would either be late Friday or Monday before she got back to me. We did have a brief discussion about how her and Dr. Walsh are pretty confident we are dealing with Simpson-Golobi-Behmel and that we should find a good Peditirian. Although I had been thinking htis in my mind, her confirming the SGB made it more real.

So here I am on Sunday December 6th holding my breath and praying for whatever reason that the markers for his tumors are just an error. Hopefully she will call me Monday morning and let us know the next step, I think we are both more okay with this now, we have given it a chance to sink in. We have a great family to turn to for support and I am reaching out to others who have special needs children or those that have children diagnosed with SGBS. There is a little boy in Texas by the name of Jackson whom has SGBS. Since it is such a rare syndrome I am not finding a lot of support groups or people to befriend. I have faith though that we will get through this and although I ask my self  "when is it our turn to have something good happen?" I know that Keegan is that something good, he was sent to us for a reason and we will always love him!

1 comment:

  1. coming over here from SITS -
    Sounds like you have your hands full - becoming a parent is a very scary time for many of us - I'm sorry you are dealing with all of this extra stuff on top of it, but thrilled that you are blogging your journey so that others who walk in your shoes may find some comfort in knowing that they aren't alone - and that they can do this -


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