Friday, February 27, 2009


I am so very excited!! I am getting a new digital camera. David totally surprised me and used some money he had stashed away to order a new camera for me. Our old one has been M.I.A. for quite some time now (see "Please Be Praying" post). I didn't realize how important our old camera was until it went missing. It's been a bit rough too because our camcorder is on the fritz. I've been really frustrated with not having any way to document our family's life the past couple of months. The new camera is actually a lot nicer than our old one. It should arrive just in time for Becca's third birthday party a week from tomorrow. I can't wait to post the new pics!

Wednesday, February 25, 2009

Our Day At Scottish Rite

We had a great and very full day yesterday at Scottish Rite. We had an AM appointment with the neurologist and a PM appointment with the urologist.

At the neurology appointment we were able to report that it has been almost a year since Lizzie's last seizure. (The last one was last April). He said that's great, but they like for their patients to be seizure free for two years before they start reducing the medication dose. He said that if you think about it, she is growing, but we are not increasing her dose, so it is kind of like it is reducing itself naturally in a way. It's really no problem to me for Lizzie to stay on her anti-seizure medication. She only takes one, and she doesn't seem to have any side effects from it.

At the urologist appointment, he said that her kidney ultrasound looked fine. Praise the Lord! (We had that ultrasound two weeks ago.) I was also able to discuss Lizzie's cath-ing schedule. We were cath-ing her every three waking hours, and letting her go for an eight hour stretch at night. The night time thing has been a bit of a trick because she sleeps for twelve solid hours. So, I've been sneaking into her room late at night to cath her. She sleeps on her tummy, so I wear a headlamp and cath her upside down. Am I good, or what?! Anyway, we have been getting really low urine outputs at her first morning cath, so the doctor said to try cathing her just before bed and not again until morning. He said that if her outputs were still low, we could stop doing the middle of the night cath. Last night was our first night to try this, and the output was low the next morning! Hurray! No more late nights for me, unless I want to. It's not a requirement anymore!

On a somewhat related note, we are experimenting with not running Lizzie's feeding pump at night. (Another liberating thing for me.) If she eats well enough during the day, there is really no need to run it at night. However, the only way to find out if she is eating enough during the day is to stop the pump feeds at night and closely monitor her weight. So for so good, and this seems to have improved her daytime appetite. We've only been doing this for about a week now, so I will keep you posted.

Well, it's late, and I am up just for me. : ) I'm off to bed!

Saturday, February 21, 2009

New Nurse

Our primary and most beloved nurse, Ms. Deborah, has been faithfully and loving caring for Lizzie, and really the rest of our family, for well over a year now. She comes to our house every Monday, Tuesday, Thursday, and Friday. Every other Friday night she stays until 11pm so that David and I can have a date night. And, anytime that we go out of town for a retreat with the students or a romantic weekend, Ms. Deborah stays all day and all night at our house with Lizzie while we are gone. Both of our girls love Ms. Deborah so much! She has been a huge blessing to us, and we all feel that she is a part of our family.

However, on the days that Ms. Deborah is not here, there have been a hodge podge of nurses in and out of our house filling in those other days for well over a year now. Some have been really good, some have been terrible. Some last for a few months, and others never come back after the first time (per my request to the nursing agency). It has been so hard on Lizzie and on me. There were times when I would come home after being gone for a couple of hours to complete chaos and total disregard to my instructions. Lizzie is a very sweet and very sociable little girl, but when she won't smile at a nurse, I know that there is a big problem. There have been times when I've considered putting in a nanny cam in my house to see what really happens while I am gone. There have been way too many times when poor David has come home from work or a late night with the students to a wife who is about to explode with frustration and anger and tears over the days events. UGH!!!

I've had a request in to our nursing agency for one nurse to cover our Wednesdays and weekends for some time now. Unfortunately the best that they could do was to fill those days with those random nurses, UNTIL NOW!!! A new nurse to the agency has offered to take on those days with Lizzie, and she is good! I am soooo very excited! This means that Lizzie will have only two nurses, both of whom do a great job, and plenty of good back-ups in case one for her two nurses have an illness or family emergency. Finally! Things are looking up!

Saturday, February 14, 2009

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.