Nursing and Appointments

I know I haven't written in a few days, but I haven't had time. We've had three new nurses sent in so far, and each one on a different day. Our regular nurse only came on Tuesday and Thursday afternoons for a couple of hours each, and the afternoon visits are not nearly so rigorous as the morning schedule. So, I have had to train the "old" nurse on morning care while she is trying to train the new nurses what she does know how to do. It's been a bit confusing, a bit hectic and more than a little annoying. I wish that they had just sent the regular nurse in until she had the morning routine down, and then introduced new faces one at a time. The VON nurse management think that the nurses can learn how to care for Kaitlyn in one visit. They just have no idea what is involved with taking care of her! The only ones that would understand how involved the care of an SMA Type 1 child is, are other parents/primary caregivers of Type 1 children.

We had our first RSV shots on Tuesday. (I say shots because they calculate the dosage based on weight divide that by two and give her a needle in each leg). Kaitlyn will go once a month now for RSV shots until April. RSV or Respiratory Syncytial Virus causes respiratory tract infections in people of all ages. Natural infection with RSV does not produce protective immunity, and therefore people can be infected multiple times. For most people RSV produces mild symptoms often indistinguishable from the common cold. But for our weak SMA 1 children RSV causes bronchiolitis and pneumonia, leading to severe respiratory distress requiring hospitalisation, usually intubation and even death.

My heart goes out to the families whose miracle children have been denied RSV injections for this season. Their insurance companies say that their children are too old to benefit from the vaccine! Our clinic has dealt with children up to the age of five(a trached child). I am hoping this means Kaitlyn has a few more years of coverage before she is also denied! It's a slap in the face to work so hard to keep your child healthy and happy every day, just to be denied access to something that could help save their lives!

We also saw PT for ankle foot orthosis and knee bracing. PT called back later that day and said that the rehab center was looking at the casting after we left and have decided that any bracing they could make would not help improve Kaitlyn's contractures. Her ankles are quite contracted and her feet are beginning to turn up. They have suggested that we try either serial casting, which they don't seem to have a lot of confidence in, or tendon release surgery. My problem with the surgery is that it seems like there would be some lasting weakness and perhaps more long term pain? There isn't a lot of information on either of these procedures on the internet(at least not that I can find). If anyone has any info. on either of these procedures please feel free to e-mail me, as we would love to hear your experiences.

We are home battling another cold this week. Seems like everyone is ill right now. This has been an awful season for colds. It doesn't seem to matter what we do for germ control...the colds keep making their way in! Keep fighting the germies we want everyone home for the Holidays!!

Kaitlyn's Hair after a Bath! Curly, Curly. It Dries Straight as a Pin!

Happy Girl on Bi-pap Playing with "Bun, Bun". (Aunty Cindi gave her this Bunny when she was only six months old. She won't sleep without it!!)