Appointments

So we showed up today at the physical therapy building in person and determined to be obnoxious until we got an appointment. We came with enough baby supplies to last a while. We were all prepared to go to war and bug people and stand there in people’s faces and all that, but in reality it was all niceties and the whole business was over in 20 minutes. We got her physical therapy and her first appointment is tomorrow! Of course insurance is only letting us schedule her through January (with three weeks off for Christmas) and they swear they couldn’t have done this faster.

We also had our occupational therapy appointment today (same building). As we feared, it was just an evaluation to see if we qualified for future therapy after which our insurance will take two to three weeks to authorize it. However, after explaining our situation, the therapist spent a ton of time showing us exactly what to do at home so as to not waste valuable time. She said that our insurance will just take its three weeks of dragging its feet and there’s nothing we can do about it. It will be exactly like it was with physical therapy, except our OT appointment was a much better experience. The therapist told me what she was doing, had experience with many other arthrogryposis patients and made sure we weren’t losing opportunities.

So for the bad news.

Laelia has some problems I didn’t even know about. Her shoulder is deformed in a way that makes her pull to the right and one arm becomes shorter than the other. The therapist has no idea what exactly is wrong and we have an appointment with orthopedics to look into it next week.

Her wrists are also worse than I feared. She will get casts on her hands and arms now to try and make any difference. If you read a previous journal entry, you’ll know that casts were not an option we wanted due to lack of mobility. Things change. The casts are coming next week and I just pray she will still be able to type someday.

Now we know what to do as far as therapy at home. Five times a day (a goal we have set for ourselves) we hurt Laelie for about five solid minutes (that seem like an eternity). She screams and it hurts her.

The therapist told me that it goes against instinct to do what she expects me to do to my baby. But I have to do it anyway. I don’t want to hurt her, but if I don’t then she’ll be completely crippled for life for sure. She may be anyway. This is hell.

In a week she will have all four limbs in casts. The casts are a constant pull and very uncomfortable. But at least then we won’t have to do as much therapy since we won’t be able to get to her elbows, wrists or thumbs.

Charley has dutifully taken the brunt of the therapy while I go upstairs and rock and cry.

Laelia also has a cold that makes it hard to breathe and nurse. She wakes up several times during sleep in a panic, wheezing and gagging. Her poop has changed color because of all the mucus and she’s coughing and sneezing. I have the most miserable baby. I hate life.

Leave a Reply