The hydrocephalus.
I could see the enlargement of her head. I could see it going up and out the back. It was nothing drastic, but it was like my eyes were opened and I could see the issue.
Maybe. Was I just being dramatic? Of the two of us, Russell is the paranoid one when it comes to our kids getting hurt (physically or otherwise), not me. Maybe I just thought I saw something. The only thing I did know was that I didn't know, but it made me feel that we were definitely on the road to a shunt as the resident neurosurgeon had suggested at our last visit, which made me sad for the journey ahead of Ally. While hydrocephalus can be easily controlled, it can also be very complicated. Shunts can get blocked or infected, and after awhile in children they are outgrown. It meant a number of surgeries throughout her life.
I just wept. With all of the great news we'd gotten on Ally over the short month and a half of her life, I'd become hopeful maybe she wouldn't need the shunt. Now I didn't see any hope of that.
I was also scared. The neurosurgeon had put in an order for an MRI, but we had heard nothing about when that would be scheduled. If I really DID see head expansion, I wanted her to be seen as soon as possible. I did not think she was in any kind of immediate danger, (no soft spot bulging or anything) but if I could see a difference then it was probably significant.
The very next morning as soon as I got to school I called neurosurgery and told them my concerns. I asked if she could be seen by the neurosurgeon. After calling back after talking with the doctor, she said that they really needed the MRI imaging to tell anything, and put in an urgent request to get it scheduled. (When I told her I wasn't really sure about whether her head was actually bigger and that I might be seeing things, she said, "No, we know you always listen to the Mama. They have instincts about these things." Right on sister!) She asked if I'd measured her head and I said no (not that I would have anything to compare it to, I hadn't written down her last measurement or had access to it). They also asked if she was having other symptoms (vomiting, lethargy, loss of appetite, change in diapers, etc.) and I said no. The hospital called later to say they'd scheduled her MRI for the 22nd. I took down all the information, but in my mind I was thinking "That's almost a month away!" She had her 2 month check-up on the 6th, so I decided to keep an eye on her and see what our pediatrician said.
I did manage to dial back the paranoia; usually I freak out and then I'm ok (or vice versa) when it comes to things like this where I get really scared or stressed. Since that day, we've had some more updates that have calmed me more.
On May 1st Ally had her first Early Intervention appointment with the physical therapist and an educator from Easter Seals. Since it was scheduled in the middle of the day I was unable to make it, so Russell took her alone. He said she did really great! Being a preemie she has a chronological age of 2 months, and an adjusted age of almost 3 weeks. Her physical development is on track for a 2 month old! So depending on which age you are looking at (chronological or adjusted) she is either on schedule or ahead of schedule for physical development milestones! While this is great news, delays can start anytime so we will continue to keep a close eye on her and continue with Early Intervention in case she does have a need for therapy in the future. One of her best milestones is her smiling at us and her brothers. She usually does it really fast and we haven't gotten a picture yet, so we will be working on that for future posts :-)
May 6th was her 2 month check up. I was only able to catch the tail end of the appointment, but I was glad I got to speak with our pediatrician. She is now 8 lbs, 10 oz, so she has officially doubled in size since her birth! (I forgot to mention in the last post that she was officially out of preemie clothes and in newborn/0-3 month clothes. I LOVE all the girlie clothes and dresses and headbands we have for her!) This puts her barely on the charts- first percentile for weight, second percentile for height. Her head, of course, with the hydrocephalus, is at the 39th percentile. I wasn't there for the actual measurement, but our pediatrician said that while her head has grown (which, of course, is to be expected) it is still in the same percentile as last month, so the growth is not exponential. She made me feel a lot better because if she had been concerned I was going to ask her to 'stretch some muscle' and move up the date of her MRI, but she seemed unconcerned about the later scheduling. One thing that was frustrating was I had requested that neurosurgery send her imaging to our pediatrician, and that had not been done. Guess I will need to be reminding them of that next time!
May is one of my all-time favorite months of the year. School is winding down, weather is awesome, we celebrate both Luke and Ben's birthdays (Birthday party extravaganza weekend! They are now officially 5 and 2 years old!), and now it is Dandy-Walker and Hydrocephalus awareness month. This must be 'proclaimed' in each state by the governor. Virginia has had it in the past, but apparently it is a yearly request, which I did not know. I put in Virginia's request April 26th, but haven't heard anything yet (not surprisingly, since it was so late). Though it is mid-May, it could still happen! I saw South Carolina, New Jersey, and Nevada just got theirs recently. However, it is still unofficially Dandy-Walker Awareness month, so please spread awareness in your school, work, or church by going to this website and printing the poster and displaying it. http://www.amywaggs.com/CartersRun/wp-content/uploads/2013/10/Dandy-Walker-Flyer-20141.pdf
You could also go to the Dandy-Walker Alliance website to learn a bit more: www.dandy-walker.org and request a wristband or car magnet from this website: http://www.dandy-walker.org/magnet-request/
You could also join us for Carter's Run this weekend www.cartersrun.org or the Dandy-Walker Alliance Day at the Washington Nationals in June.
The picture above is a common slogan from the Dandy-Walker Alliance. What isn't shown is the 2nd part of the tag line, which says,
"That's a lot when your child is the 1."
Never has that been more true than now.
Please continue to pray for decisions for next school year for our family. We have had some questions answered, but still have a lot to figure out. And of course pray for Ally, especially on the 22nd for her MRI (she has to be sedated for it :-( ). I will have a few more updates before the end of the month, especially after this weekend at Carter's Run and her MRI next week.
No comments:
Post a Comment