Medical Update – 9/17/09 (Part 2)

Looking Ahead

So other than all the usual dentist and pediatric appointments that are par for the course with any infant, here is the run-down of what Annabelle’s medical calendar looks like between now and the end of February:

Physical Therapy: Every Monday and every-other Friday
On Mondays, the wife takes Annie to PT in El Cajon (25 min away). Every other Friday, a different therapist meets the wife and wee-one in our home. These appointments will continue indefinitely.

Goals: Strength training for the upper body and continued work on mobility (commando crawl)

Occupational Therapy: Once every 2-3 months
The OT is in the same place as Monday’s PT so every couple months or so, the wife and Annie pull a double shift on Monday and see both PT and OT. Our Friday PT has OT connections as well who can come to the house as needed.

Goals: To keep Annie right on track with hand/eye coordination, eating, talking etc.

Neurology: Once every 6-12 months
Neuro will continue to monitor Annabelle’s head to make sure she does not develop any pressure or swelling due to hydrocephalus. Our next appointment is in February.

Goals: That the “3V” procedure was successful which will eventually render her VP Shunt unnecessary. That the VP shunt (if needed) continues to work properly and without complications .

Orthopedics (Spine): Once every 6-12 months
Orthopedics will continue to monitor Annabelle’s Kyphosis and do what can be done to reduce any worsening of the curvature. We are in the process of scheduling an appointment for the next week or so in order for them to re-evaluate the soft-body-jacket they prescribed which aggravated the area of her pressure sore.

Goals: Prevent and correct the bend in Annabelle’s spine through bracing and strength exercises.

Plastic Surgery: Once every 3 weeks
PS will continue to monitor the spot on Annabelle’s spine where the pressure sore developed. We will be going in every 2-3 weeks until it is healed.

Goals: Complete healing of this sore and avoidance of any pressure sores in the future.

Urology: Once every 6-12 months
Urology will continue to monitor Annie’s bladder and bowel function. As Annabelle approaches the age of potty-training, any developmental differences will become more apparent. We are taking this whole thing one step at a time and are preparing ourselves to possibly have to begin a cathing regime after our next appointment in February.

Goals: That Annabelle is able to potty train and that cathing is not necessary.

Orthopedics (Feet): Once every 3-6 months
There is a chance that Annabelle’s feet could start to regress towards their clubbed position so Ortho will monitor the growth and development of her feet to make sure they stay in the proper position and do not have further complications.

Goals: That Annie’s feet stay in the proper position.

So in terms of official medical appointments (not including therapy) I would guess we will have 9 or so total in the next 5 months. Not bad, really.

Home Care: 2x a Day, Every Day
Along with all the official medical stuff, we give Annie a break from her AFO boots twice a day for a couple hours each. The wife has been good about rubbing scar minimizing ointment in all the right places. The wife also does therapy with Annie twice a day as well – working on sitting, rolling, crawling etc.

Parents:
I suppose I can only speak for myself . . . the shunt and hydrocephalus are not constant worries to me anymore. Sure, if Annie cries in the middle of the night, doesn’t want to eat or is fussy (almost never) there is always that nagging echo of, "Is this normal or is her pressure building up?" But I don’t think about it everyday any more. Annie’s feet are something of a long-term concern. It doesn’t stress me out right now – but I am concerned that they grow and develop properly. The prospect of cathing isn’t as big a deal to me as it once was and I don’t feel too much anxiety about that either.

The spine though, that stresses me out in a big way on a daily basis. It’s one thing if your child has a problem that requires surgery – at least it will get fixed. But to say, “Your child has this condition and there is nothing we can do about it right now and she may get worse . . . “ Ugggghh . . . it makes me want to shake somebody. But we are continuing to trust God and do what we are able. Here we are in any case. This is our “New Normal”.

Through it all, Annabelle continues to be a total joy – laughing and giggling and “getting on with it” every day. The dear wife exudes a hidden strength and a fierce determination to work with Annie and the therapists to force the best outcome possible. Me? I am just trying to keep up with the two of them.

Oh, and Buckley is great too – stinky right now – but even so, the world’s best dawg.

Thank you for your continued prayers and support!