visit to CHOP and Oma and Pop's house

Last night we got back from our trip to NJ. We flew up on Saturday and had a Christmas celebration with my parents and my brother, Trina, and Alex. It was so wonderful that Dave, Trina, and Alex were able to drive up from VA and visit. Otherwise, I am not sure if we'd have been able to see them until their new baby is born (March). My friend, Allison, and her husband (Jay) and son (Dylan) were able to come over, and the next night Jim's brother, Scott, came by for dinner.

Family portraits using the timer

Alex

Pop and Alex

Alex, Eve, and Oma - sweet harmony

Pop, Alex, and Eve

Dylan, checking out the train

Oma and Eve share a laugh


Dave and Jim "helping" Alex with some legos


We had a fabulous time and enjoyed ourselves immensely spending time with family and friends. But we had to adjust to the cold!! I think the whole trip was great with the exception of the return flight (an hour in the security line and numerous delays - we didn't walk in the door until 12:30am).

Tuesday was also exhausting. That was the day we went to CHOP. When we had originally set up this visit, we thought Eve had CP (that's what the neurologist was saying). But, as you know, that has come into question. Because of that, we did not see any docs on Tuesday because if we are not dealing with CP, why would we waste the time of the CP docs? Plus, some major strings were pulled to get us into there in the first place. So, instead, we saw a PT and OT who were pretty amazing. The examined Eve (as much as she allowed them - she still has a lot of fear of medical settings) and made some really great suggestions. The PT gave us some exercises to do with Eve, suggested we get better orthotics for her (hers are not optimal), and reminded us that she is still a 2 year old and is not the boss (even though we might be inclined to baby her because of her disabilities). He also recommended a hip xray (to be able to monitor her hip development) and suggested certain pieces of equipment. The OT then came in and within moments constructed 2 simple fabric strips, wound them around Eve's hands, fastened them with Velcro and it improved her thumb positioning. She also showed us several pieces of equipment and recommended that we try to order 4 pieces - a gate trainer (which is like a walker with a suspended seat), a stander (which straps Eve in so she can stand and help those hip sockets form), a positioning chair (that helps her sit using better posture), and a bath chair (that sort of looks like a mesh beach chair but will help us with baths).

Now, the first three pieces of equipment have been mentioned by the PT in GA, but it has been more casually mentioned and certainly not as aggressively (I'm not intending a negative connotation here). It is my understanding that the PT here has been more conservative about ordering the equipment because it is so very expensive and we don't truly know what's best for Eve yet. If the insurance company only allows one piece every 3 years, what if we use that allowance for something that is not the best for Eve. I talked to Eve's GA PT and she agreed that we can certainly order these things and see what happens. She also said that there is a equipment representative from Atlanta that makes house calls for fittings, ordering, etc. Basically, the process will take several months, but he comes out, measures Eve, we choose the exact equipment, and he does all the legwork. Then he gets back to us and tells us what insurance and medicaid are willing to pay and we make our decisions from there.

So, basically, we've got the CHOP people saying we should worry yet if the insurance companies say no - we need to ask them to find out. Eve needs assistance no matter what the diagnosis and prognosis is, so why drag our feet? Let's get moving on things that will make her more independent.

I am probably forgetting a lot of information here. But, really, that's the nutshell. It was extremely overwhelming. I just want to do what's best for my kid, and it's worrisome that I might have been overlooking things or losing time on strengthening her muscles and making her more independent. So all in all, it was a great visit. We are ready to move forward. Oh, and the appts with Shoffner are in 2 weeks. I got a letter today telling us where to go and when. It's going to be a long two days.

I hope you all have a fabulous Christmas and New Year if I don't get the opportunity to talk to you. Thank you for keeping tabs on what's been going on with Eve.