So, for 6 years I have been treating these kids - always aware of the busy schedules many of these families must have as they list the millions of specialists that they see along with their weekly therapy appointments and all of the typical pediatrician appointments that every child has. My first big ahh haa moment was when I had the twins. Having kids made me a different physical therapist. I had a whole new understanding of how utterly crazy a new mom's life is. I remember it being a good day when I had brushed my teeth, showered and the kids lived through the day!! Suddenly I was different here at work - my home exercise speeches went from "you need to do this 3 times each day" to "mom, I want you to try to squeeze it in once a day." I went from giving mom 10 sheets of activities to do to narrowing it down to one or two and reassuring mom that these were just activities to work on when she is already on the floor trying to spend some quality time with her little one. I even frequently find myself saying now, "mom, I know that life is crazy and busy but....."
I thought I had a pretty good handle on what many of these mom's and dad's go through........HA!! I thought that until I had Easton!! Now I find myself wondering on a very regular basis how any of these families ever make it to appointments on time let alone with everyone in one piece and often everyone looking put together, fed and with reports of good home exercise program follow through!!
I am a pediatric physical therapist. I deal with feet for a good portion of my day. I know how important feet are. I know that without good feet underneath him, any standing activities are going to be more difficult for Easton. Even with all my knowledge, I still don't stretch him as much as I should - frankly, I'm tired when I get home at night!! I have dealt first hand with trying to make it on time to appointments....when it gets really fun is when you have several in one day!! I have also gotten to enjoy the crazy that is Nemours (that's the children's clinic here in Jacksonville - it's where a good portion of the pediatric specialists are). That place is like a city! It's big and there are people wanting to check you in and check you out and get your payment and scan your ID and oh my goodness by the time I leave there I'm exhausted. This past Monday morning Easton had four different scheduled appointments....FOUR!! I felt like I was on an amusement ride - I showed up at 8 and then just went around and around and around until it was all over!!
So these four appointments is why I actually sat down to update the blog - I'm not sure where all of that came from but now on to the actual update :)
Update #1 - Neurosurgery - So neurosurgery is not actually one of the appointments Easton had on Monday but I talked to the office last week so I wanted to update everyone on what is going on. Most of you all know (if not, go back and read my last update) that our last appointment with Neurosurgery didn't go quite as well as we had hoped. We left the appointment with a "wait and see" and "call us if this new slightly bulging fontanel becomes his "new normal." Well, after "petting his head" about 4 million times over the weekend I couldn't stand it anymore - I needed to talk to someone at the office and get a more concrete answer/plan. The PA that I spoke with was very nice and reassured me....I told her first of all, even though I am a medical professional I feel like my brain turns to mush when I am dealing with my own little one. I also voiced our concern that this "he might need a shunt" issue was going to move from might to "he needs one right now." I said that I was so nervous we were going to end up in the ER one night and have whatever doctor was on call be putting a shunt in our kiddos head. She reassured me first of all that my brain is supposed to go mushy when I'm talking about my own kid. (That's a good thing!!) She also said that very seldom does this type of hydrocephalus (that's the fancy word for what would cause him to need a shunt) progresses quickly enough that it would be an emergency type surgery. She reviewed signs that something is going on that needs attention (ie - an office visit) and then the most reassuring thing was Dr. Beier scheduling us for a repeat head ultrasound in 3 months was her way of indirectly saying that she didn't feel that this is anything that would require any additional attention or surgery until at least then. So.....we wait.....and say a lot of prayers that the little "take care of the fluid" dudes in his head start working!!
Update #2 - Urology - Easton had a renal ultrasound and then a follow up with the doctor. Now, bear with me on this one....Urology is WAY out of my realm - I'm not sure I even know enough to be dangerous here!! So this is what the doctor had to say. Easton's ureters were slightly dilated and there was a small amount of fluid that appeared to be backed up into his kidneys. Dr. Ehrhart said that when the ultrasound was done Easton's bladder was full and that both the dilation and the fluid in his kidneys could be nothing more than a little guy about to pee.....BUT, it could also be an indicator that Easton's bladder concerns are progressing. The doctor said he didn't feel like this was a sign of progression but felt that since there had been a change as compared to the initial renal ultrasound that was completed in the NICU he wants to see us back in 3 months for a repeat ultrasound. Now, why could they not just wait two minutes until the kid peed and then do the ultrasound again?? I HAVE NO IDEA but that does seem to make sense to me!! Oh well - the doctor wasn't really concerned just preferred to be more cautious than not which I am ok with. So again....we wait.......
Update #3 - Orthopedics - (I saved the best for last) - We saw Dr. Loveless and the appointment went pretty close to perfect. We started with a follow up xray of his hips. Dr. Loveless said that Easton had NO instability in his hip and that the xrays looks excellent. He assured me that Easton could stop wearing the hip brace BUT knowing that I am a pediatric physical therapist and am going to expect perfection he assured me that it was fine for Easton to keep wearing it, especially if it doesn't bother him (which is doesn't so he will definitely be continuing to wear it!) Dr. Loveless also complimented how great Easton's feet look - questioning if he had a physical therapist working on his feet (I assured him I didn't know any PT's - and was pretty confident that Easton didn't live at home with one) :) He also was very happy with the amount of active movement that Easton has of his legs. He wants to see us back in 6 months but said he doesn't have any concerns at this point!!
So - overall, Monday was a good day!! Our biggest concern and prayer request is those silly ventricles!! Unless something turns ugly fast, we wont really know anything about a plan as far as shunting goes until mid December (likely the same week E was originally diagnosed with spina bifida). Thanks for your continued prayers. Add Mason to the list if you will....yucky cough and ear infections - poor kid!! Hoping these antibiotics kick the funk quickly!!
I have GOT to get some new pictures put up but right now the leftover dump cake in the kitchen is calling my name so pictures will have to wait for another day (I have priorities you know!!)
Love and Hugs!