Monday, March 01, 2010

We've come a long way, baby!

There have been several milestones and memorable moments here at the Almengor homestead (ha..not really, but I'd love it to be) that I haven't taken time to write about. (I know I'm ending my sentence in a preposition...but, it's my blog for my own sake, so I'm going to. Ha. I did it again!)

Let's start with Judah since this is "" after all.

We've been tracking Judah's growth for several years now. I cannot believe it's been several years that we started down this road, but alas time flies when you're having fun (or just too busy to notice).

It'll be 2 years in May that Judah's endocrinologist recommended we start Judah on a daily shot of human growth hormone. It's been nearly 2 years that we've patiently and persistently asked God to sustain Judah's growth so as to either hold off on such a course of treatment or not need it altogether. It's been 2 years that we've gone to Dr. Germain-Lee every 3-4 months for height/weight checks and blood draws. It's been 2 years that we've avoided having to begin the treatment of HGH shots because God has answered our prayers and continues to answer our prayers to sustain Judah's growth.

During Judah's last endocrine appointment, Dr. Germain-Lee looked at his charts, bloodwork and him and said (and I quote), "He is an anomaly. I do not understand it. He should not be growing like he is."

We give thanks. We do not take it lightly that the God of the Universe, Creator and Sustainer of all things, hears and answers our prayers. We know that God may in time allow Judah's body to fall in line with the laws of nature that HE established and halt Judah's growth. By God's grace, we will accept that with gratitude just as we have gratefully accepted God's supernatural intervention up to this point.

On another health front, I recently took Judah to see his neurologist, Dr. Comi, whom he hadn't seen for nearly 2 years~ Understanding the implications of Sturge Weber Syndrome, one would realize that this fact alone is a lot to celebrate. There aren't too many folks with SWS who willingly go 2 years without seeing their neurologist. BUT, we have had no need. Neurologically, Judah has been doing so well. No signs of seizures/strokes/developmental delays, etc. No problems have erupted with his VP shunt.

When Judah was 13 months old, he had an MRI of his brain which gave no indication of brain involvement in regards to his SWS. To say we were relieved is truly an understatement. Unless you are a parent of a child with SWS or perhaps some other chronic diagnosis, I'm not sure you can fully appreciate the relief that comes with news such as this. Nevertheless, our relief has always been somewhat stifled by our understanding that not enough is known about the progression of SWS for a doctor to confidently write off the possibility of neurological complications to begin in a person somewhere down the road. We've never received that kind of concrete prognosis for Judah...until last month!

Dr. Comi was grateful I brought Judah in to see her. In her vast experience with SWS patients, she has not had another who had no brain involvement AND hydrocephaly (swelling of the brain which required Judah's VP shunt) at the same time. She and other of Judah's doctors found this to be puzzling at best. Mere coincidence that the same child would end up with two different kinds of neurological disorders? Well, we know better, of course. We know that whether Judah's SWS and his hydrocephaly are related or not, God is His Creator and fashioned Judah in such a way that this is not a mystery to Him. Along the way, there have been a number of doctors "puzzled" by our little man. We are so grateful to know the ONE who is never puzzled by any health matter/bodily function going on with Judah or any of our kids for that matter.

So...we saw Dr. Comi, and I asked her about then potential need for another MRI to see if there might have been changes in Judah's neurological status. She felt there was no need for a repeat MRI because in her entire career and vast experience, she has yet seen a patient who had a clear MRI done after 1 yr. of age return later with signs of neurological involvement. WOO HOO. Thank you, Lord. Like Judah's growth, we'll take what comes. We will choose to trust ultimately in God and not solely on statistics and what our doctors prognose. But, we will give thanks for every bit of good news we receive on this journey with Judah.

Now, there is our girlie.
She has had some of her own "big news" in the last several months.
Two weeks before Christmas (her timing not mine), she decided to potty train. I write potty "train" loosely because really, she didn't require much training at all. One day she had "the look" like she needed to go to the bathroom. So, I asked her if she wanted to try to do it on the potty. She wanted to try, and SHE DID IT! We all praised her like she had won the Nobel Peace Prize. It was about 2 days of asking her every 10 minutes if she needed to go to the potty, a handful of accidents later and she was pretty much trained. She hasn't worn a diaper since..even for naps or nighttime sleep which, to me, is rather impressive. The girl just gets it, I guess.

Not long after being potty trained, Bella figured out how to climb out of her crib. SO, again on her time table and not mine, she transitioned to her big girl bed. Again, she surprised me and did rather well with this transition. That said, we did have a bit of an "incident" just last night where she got out of her bed and scattered the contents under the bathroom sink and her closet all over the floor, vaseline and lotion included. (Pictures forthcoming)

The last "big" milestone for my girlie was giving up her "nukies" (pacifiers to everyone else). We have not allowed Bella to have her nuk during her wake time since she was about 2, but I just couldn't bring myself to taking them from her for her sleep time. It was definitely laziness on my part. I just didn't want to deal with a screaming baby at night again. That's what I anticipated would happen when we took her nuks away. BUT, yet again, she surprised us and has been without her nuks since her 3rd birthday without crying once for them.

Bella is difficult on a daily basis (what 2 or 3 year old isn't?). But, with these big transitions, she has proven to be such a big girl. It's where her fierce independent spirit has paid off for us, I guess.

SO, we are a diaper-less home once again. And, we no longer own a crib. No more bibs, baby seats at the table or bottles. Wow. It only took 5.5 years which is relatively a short time in comparison to many others I know. Maybe we'll be doing diapers again down the road. I wouldn't mind. No. There are is no other news, though we are in the process of researching adoption agencies. We'd love your prayers for us in this.

1 comment:

Danielle said...

Great news about Judah! Woo hoo!

I wish removing my boys "pacis" was going as smoothly as your experience was. We will make up for the screaming for you. :( And the sleepless naptimes.