Memories Monday

This picture of Mirthe and Anna was taken at 12 days, and was the one we ended up using when we sent out her birth announcements, almost a month late. I remember bursting into tears when I first saw this photo, up on the computer -- the tears thing was nothing new, I cried pretty much straight the first three or four weeks -- but it was the first time I really saw her hand/arm "that way" -- the Erb's Palsy way. It was definite. I wasn't going to wake up from this. She had a handicap, she'd lost the use of her arm and it was going to stay that way, forever. I remember hunching over the keyboard, hand over my mouth, the screen going blurry from the tears in my eyes. Oh my baby my beautiful baby was the only thing running through my head and I felt like my head was going to explode, together with my heart, from grief.

A few days before this picture was taken we'd been to the Leids University Medical Centre (LUMC) with Anna, on referral from the hospital pediatrician who'd examined her right after the delivery. Anna was a week old, it was my 37th birthday. There is a research program at the LUMC for babies born with Erb's Palsy -- it is also one of the three hospitals in the Netherlands that performs the nerve transplantation surgery that many of these babies need. I was hoping for a birthday present -- for good news, for someone to say: "I think she'll start to recover within a week or two."

Didn't get to open that present that day. They examined her and after numbing the skin with a gel, placed three looooooooooooooooooong needles in her right arm, on the nerves that are most often damaged in an EP. These needles were attached to electrodes and some kind of computer contraption -- when they sent a shock down the needle, they could read Anna's nerve response on the computer. Only there was no response, not from any of the three. That was not a good sign -- and the doctors told us that we should begin to prepare ourselves for the operation, that is mostly done around four or five months. It's a ten hour operation, where they take nerves out of the calves and transplant them in the arm -- these nerves latch on and continue to grow and take over the functions in the arm. Apparently your calves don't need them :-)

When Anna was a month old, we went back and repeated the testing. This time, we got response from two of the three nerves. That meant that they were stretched out or damaged, but that signals were getting through. The last nerve, the one that controls the biceps, gave no response.

When Anna was three months old we went back for the last round of tests. Once again the biceps failed to respond, and Anna was officially put on the waiting list for the operation. We kept up her physical therapy, to keep everything supple, but had accepted that she'd have to have the operation.

When Anna was four months old, I went into her room in the morning to wake her up and found her sleeping with BOTH arms above her head, a position that is almost impossible for an EP baby with no biceps-function. I almost forgot to breathe, it was so beautiful, the sight of Anna sleeping.

Shortly thereafter, our physical therapist thought she saw some biceps-function and advised us to make another appointment with Leiden, to see what they thought. We took Anna in and they were cautiously optimistic. (Four months is a really really REALLY late recovery, on the edge and hanging on by the fingernails recovery, because 90 % of the babies recover use of their arm within a month. The other 10 % have the operation.) We made an appointment to come back when Anna was 5 months old and if there wasn't significant improvement, she'd be scheduled to be operated a few weeks later.

It was a month of endless physical therapy (on my part) and prayer (over the whole world) for Anna.

At 5 months she went to Leiden and knocked their socks off. She was throwing her arm around this way and that, raising it over her head, giving and resisting pressure. She was a miracle EP baby. The function that she had in her arm was better than the function they HOPE to achieve after transplantation. The physical therapist in the LUMC program, Sonja, just looked at me and said, "Well I guess we'll see you in six months!" I couldn't believe what I'd just heard, and stammered something like, "No operation?" and she just smiled at me and said "Nope!"

We'd still keep going in for progress checkups, because Anna took part in the research program (needles/electrodes) but only once a year or so. The physical therapy was cut down from every week to every other, then once a month, then once every three months. The therapy in Breda is finished and we've found another therapist in Drachten, not too far away from our new home. We had an intake in August but she was just as impressed with Anna as everyone else has been -- we'll continue to go every three months or so. Once again, if problems arise then she can help us solve them with Anna.




















Tomorrow we're headed off to Leiden for the yearly checkup. In my head I know that everything will be okay, but my heart still worries a little. That they'll see something we don't. That her shoulderblade really is sticking out too far. That her elbow isn't bending far enough.

We'll see :-) I'll try and take photos tomorrow and post them here this week. We're going to attempt the LUMC for the first time without a stroller -- which means TWO walking/running/climbing/havoc wreaking kids. Wish us luck.

UPDATE:

They were more than pleased in Leiden, and we don't have to come back for two YEARS! Do have to watch that shoulderblade, and Anna sits too much on one buttcheek (result of her not crawling, I think -- she buttshuffled and then moved on to a tripod, using her left arm, left knee, and right leg instead of her right arm) and that can cause problems later, with body symmetry. So those are things to work on with the therapist in Drachten.