Same song, third verse...

Saturday night Jamie and I began to notice that Anderson wasn't using his left arm much...we also noticed that he kept falling over to his left while he was sitting up- even in his highchair...he had also been really fussy, and sleepy. Sunday afternoon I put it all together and told Jamie "His shunt isn't working." He gave me a look and said, "You know, I was thinking the same thing." So we kept watching him...apparently he does not have the normal signs of shunt malfunction, but somehow we both just KNEW that's what was wrong.

I got out the tape measure to do a head measurement and realized quickly that his head has grown 2 cm since our visit with the neurosurgeon on the 24th (one week). I knew this wasn't good and immediately put in a message to the doctor.

The doctor told us to come in through the ER so that we could get the MRI done quickly. Even in a waiting room that was overflowing with sick children, we were taken immediately to a room and had already seen 2 doctors in about 15 minutes of being here.

We had an MRI and a shunt series of xrays. We were told that everything looked pretty good. The last step was a shunt tap to check the fluid....when they tried to tap the shunt, they couldn't get ANY fluid out- which means it isn't working. So...we are having surgery #3 sometime tomorrow. It has been less than 2 months since our last shunt revision, and I can't stand that he is having to go through this again, especially so soon.

I am hoping that we caught it quickly enough this time that only a piece in his head has to be replaced and not the whole thing like last time...please say a little prayer for Anderson tomorrow. Specifically that he will not have as much pain this time as last time and that this shunt will work for longer than a few months.

Thanks for all prayers. They work and mean the world to us.

Still here...

I decided I needed to let everyone know that we did not skip town with the New Year- we are still here, just haven't had much to write about. In fact, I've been a little lazy. We've had a few snow systems come through- which of course means no school. So we have spent many days lounging around the house, playing games, watching movies, and just relaxing. We have ventured out to play in the snow, but only when Anderson was taking a nap- he's not too sure what to think of all the white stuff.

We are all doing well. Anderson is officially sitting up by himself. He loves to sit and play with all of the "loud" toys he got for Christmas. I still don't understand why toy companies think babies are deaf and that the toys have to be SO loud....whew. But it seems the louder they are, the more he likes them- so I guess they have it all figured out.

Tomorrow we will venture back to Vanderbilt. We will visit the neurosurgeon for his 6 week follow-up from his last surgery (has it already been 6 weeks?). We will also go to get fitted for his cranial helmet. Once he gets fitted, we will go back in about 10 days to get it. Then he will be sporting his helmet for 4-6 months. Fun times! I've already been researching some cute, I mean neat, decorating ideas for his helmet. There are some cute ones out there ( as cute as they can be) that are personalized with any theme you could want. I've also found some really cute bibs and shirts with sayings on them about being a "helmet baby".

My favorite so far:

He is also going for a PT evaluation this week to determine if PT services are needed or not. His EI teacher and I were concerned that even though he is sitting up and doing other things, he HATES his stomach and therefore will not roll without prompting. He also won't prop himself on his forearms or try to move toward an object while on his stomach. So we will go for an eval this week and find out if he just needs more time or needs to strengthen his upper body muscles.

So, it's going to be a busy week.

Also, our pregnancy journey with Anderson was posted on the ACC blog in a section that is titled "ACC and Moms-to-Be". Look for the link on the right side of the page. I very much enjoyed getting to share our story in hopes that someone out there who was expecting a baby and had received this diagnosis could see that it's not the end of the world. I want as many people as possible to know our story and see how God has worked in our lives and truly blessed our family and many others with Anderson. I have really been bothered by the fact that there is only a small amount of information out there available for people who are given this diagnosis. Even doctors seem to not know much about it- therefore many who receive the diagnosis are given the option of terminating the pregnancy. That bothers me really bad. There HAS to be a way to get more information out about ACC. Expectant moms should be able to be fully educated about the diagnosis. This is really tugging at my heart, and I feel a need to help with this cause but I'm not really sure how to do that... I mean, people are being told to terminate their babies when the doctors REALLY don't know. Look at Anderson- we were told when he was 5 or 6 days old that he would have severe problems and be extremely delayed. We were told to file for him to be on disability. ....Now I know that he is only 7 months old, but look at all he is able to do! Cognitively he has scored 2 months ahead. He is hitting most of his milestones early or on time. In fact, other than rolling over, he hasn't missed a milestone yet. I know he still has a long journey, but he is proof that God still works miracles and that the DOCTORS DON'T KNOW.

Sorry for getting on my soapbox...just something I am really concerned about right now.

Anyway, I will update later this week about all of our appointments and our PT eval. Hope everyone has a wonderful week! :)