Please Be Praying

There is a lot going on with Lizzie right now. They are all good things, but they do need some prayer.

1. Some time ago the ENT (ears, nose, and throat) surgeon gave us the all clear to try and cap off Lizzie’s trach. If we are successful at capping off her trach, this means that would could potentially get rid of the trach altogether. It can be a lengthy process with many small steps involved to building up her tolerance to having her trach capped. Well, we have reached the capping stage and are working on increasing the time she spends capped off everyday.

However, I am not completely convinced that her vocal chords work at 100%. She had surgery over a year ago to take the pressure off of her brainstem in the hopes that her vocal chords would start to function properly. From all appearance, this was a success. But, every time we cap her off, she appears to be working too hard to draw in a breath. We have her hooked up to a pulse-oxometer machine, (it measures pulse and heart rate) and all of her numbers look fine. But, when you look at her chest, you can see it moving much more than would be expected for each inhale.

We just had a CT scan and a follow up appointment with her neurosurgeon this week, and she said that the scan looks great and things look even better than they did at her last scan a year ago. When I mentioned my concerns with capping her trach, the doctor had two thoughts. She said that although we were successful at taking the pressure off of her brainstem there could be some underlying issues with her brainstem itself as evidenced by her need for bi-pap at night and her vomiting problems as well. She said that it is possible that the ENT needs to take a closer look at Lizzie’s vocal chords again and do some further testing and observation to see if they are in fact functioning well enough to have her trach capped.

Pleas be praying for this situation as I am not sure what this all means in the long term. . . a trach forever?. . . more surgery?. . . everything will work out fine?. . . I’ve had to train myself to not look too far down the line with Lizzie. It can feel very overwhelming, I just have to trust the Lord for one day at a time and love my baby girl as she is right now.

2. The second thing going on with Lizzie is her feeding. She eats (or should I say struggles to eat) approximately 1/2 jar of stage 2 baby food three times a day along with a bottle of formula at each feeding. She has a very sensitive gag reflex so we have to take it slowly and carefully. She does an interesting tongue thrust move with each bite as a self-protective method to prevent us from putting the spoon too far into her mouth causing her to gag. She puts up a fight with each bite and we are doing everything we can, short of pinning her down, to get her to eat. We listen to music, play toys, act silly to make her laugh, anything we can think of to distract her mind for the fact that she is eating. The process for each meal on average takes about an hour and a half or more. It is exhausting and requires an extra large dose of patients.

The good news is that she is starting to feel more and more comfortable with different textures, which I hope will one day lead to her eating normally. Please pray for Lizzie, I feel like we are really pushing her to the ends of herself with this, but it is for a good reason. Please also pray for patients for the nurses who have to contend with this three times a day.

3. We are really working with Lizzie on her mobility, strength and endurance. The orthopedic surgeon wants to know that she is physically strong before he will do the surgery to correct her right foot. After the surgery, and after the cast is removed, they will look at getting her a wheeled stander. (A wheel chair you stand in.) This will allow her to do some weight bearing on her hips and legs to strengthen the joints and bones, and allow her some upright mobility. Right now, she army crawls to get from place to place. But, she has to be strong enough to be in an upright position. (Her lower half will be supported and strapped into the stander.)

Once again, we are really pushing Lizzie to the ends of herself with the amount of physical therapy we do with her each day, but it is for a good reason. Please pray for a good evaluation appointment coming up at the beginning of April. I would love for this to happen sooner rather than later to allow Lizzie more independence.

4. Please pray that I find our digital camera. It’s been gone for about a month now, and I can’t find it anywhere. I don’t think it would have been stolen; it wasn’t a very expensive one to start out with. I think I just left it or put it in an unusual spot. But, I am starting to get concerned.