Monday, July 31, 2006

"Country Road, Take Me Home"

Apart from the unexpected wait and duration of our appointment, last week's EEG/neuro. eval. went well. Judah's neuro. eval. went rather smoothly with no apparent reason for concern. Judah and I then headed to the EEG room where we waited for a while as the tech. was not informed that we were there. Once the tech. showed up, he began attaching the electrodes to Judah's head, about two or three times as many electrodes than Judah has ever had before.

Thankfully, Judah sat rather cooperatively throughout most of the tedious process. However, just as the tech. was commenting on how unusually cooperative Judah was being, Judah decided to "spas", which is not an understatement. It was as if a switch was turned off and he just lost it, decided he had had enough and wanted to lay down to take his nap. This happened three electrodes short of a complete modum. Eventually Judah fell into a deep enough sleep that we were able to get those three electrodes on his head along with heart monitors. This was the most involved EEG we've ever done with Judah, and apparently it was necessary for research purposes.

Needless to say, I didn't go to the appointment with the expectation of being there as long as we were. We left our house at 10 a.m. and did not return until 5 p.m. Nevertheless, Judah's EEG appeared normal, no evidence of seizure activity, which is what we always want to hear.

This week, I am working on getting our house cleaned for the upcoming birthday party for the boys' 2nd birthday. They turn 2 this Thursday as hard as that is to believe! I'm also gearing up for a last minute trip out of town. Lawrence left Sunday afternoon for a business trip to West Virginia. It's a week long trip, but thankfully I will be able to join up with him mid-week along with the boys. He will be visiting an office near Morgantown, WV the latter half of the week, and thankfully, I have a good friend from college along with some family who live in or near Morgantown. So, I'm packing up the boys and heading west.

You can pray for safe travels as I do not drive long distances very well. I tend to have trouble keeping my eyes open...really not a good thing. The boys are over the virus/congestion they had for two weeks, but I always get nervous when they've been in children's ministry at church that they'll come down with something new--I know this is not the most faith filled outlook, but unfortunately it's based in our history with children's ministry. So, we'd appreciate your prayers for their and my continued health as well.


Monday, July 24, 2006

Developmentally on Track

Our appointment with Sue from the Infants & Toddlers program went very well. It was actually very encouraging to hear her assessment of Judah's development. She felt very comfortable with his cognitive skills and commended his verbal development. The only area of potential need was his fine motor skills, but this was not a surprise to me. I have observed that Judah is not as able or motivated to apply himself with tasks that require greater attention to his fine motor skills. Sue and I both agreed, though, that is probably more an issue of motivation than ability for Judah.

As compared to Tucker, Judah seems behind, and even according to the 'charts', he is about 2 months behind. But, it isn't a gross delay, and after submitting Judah to several kinds of tests and talking with me about my observations, we both concluded that Judah is not in need of ongoing services right now. Sue is going to be sending me some exercises and activities I can use with Judah to try to help him grow in this area and will check back with us in several months. Overall, I was grateful for her professional assessment which indicated that God truly has been merciful to my son, sparing him of the developmental delays seen in many SWS kids.

This week, Judah will have a routine EEG and neuro. eval. There will be yet another new person administering the test, hopefully one who is good with children, and there are also new guidelines for the EEG. They would like Judah to sleep for at least a portion of the test. So, please pray that they will get an acceptable EEG from Judah and that it will again indicate no concerns for any brain involvement of the SWS.

The boys are both fighting some congestion that just seems to linger. Would you please pray that they will completely heal of this soon so that they can play with their buddies once again?

Monday, July 17, 2006

Judah is Growing Up

Thank you to all who faithfully pray for our little man, Judah. This past Wednesday at his eye dr's appointment, he sat through nearly the entire exam without crying. It was amazing. I felt like I had a different son. We've never made it through any dr's exam without him crying, let alone screaming and thrashing about, wiggling out of my arms. Dr. Abrams was able to get a really good look at his eyes. The swelling on the optic nerves has come down significantly which is a sign that the shunt is doing its job. Thank you, Lord!!

Today, I had to take the boys to the pediatrician as both of them came down with something over the weekend: fever, congestion, and very cranky. Again, Judah sat still and quietly endured the entire exam. His brother didn't do so well, but I guess he hasn't had quite as much practice. It appears both boys are fighting some sort of virus that hopefully will work itself out of their systems soon.

We learned at our appointment today that our pediatrician, Dr. Beck, who we love, is leaving the office in Bel Air to have her own practice at a 'sister' office in Ellicott City. We've had to say goodbye to two other medical care providers of Judah's, and it is always difficult to do so. Because we rely so much upon their care and because Judah's medical needs are so varied and unusual, it is always a test of my faith in God's goodness to see another one leave.

Please pray that I will resolve in my heart to believe God is good no matter what and will trust that He will show His goodness to us in tangible ways, even through the provision of a new pediatrician.

Also, tomorrow morning, a woman from Harford County's division of Infants and Toddlers is coming to the house to observe Judah. He qualifies for an evaluation and potentially services because his syndrome is one that can involve developmental delays.

Please pray that Sue, the woman observing/evaluating Judah, will see all that she needs to see from Judah and that God will give her special discernment to determine whether or not Judah needs any sort of early intervention. Also, pray that I will guard my heart once again to not fear the worst or jump to conclusions about Judah's future should there be evidence of delays, etc.

Thanks so much for caring for our family and carrying us on your hearts through your prayers.

Tuesday, July 11, 2006

Our Week and the Next 30...

A part from the 2.5 hr. wait last Friday to see Dr. Carson, our follow up visit with him went well. No concerns were noted, only a short list of various activities Judah should not participate in. As much as Judah screams his head off at the sight of anyone in a white coat, he did something very cute and very endearing when Dr. Carson walked in to see him. I guess Dr. Carson figured he wouldn't even look at Judah let alone touch him if he didn't need to, but reached out his hand instead to shake mine upon entering the exam room. Well, I looked over at Judah sitting like a big boy in the chair next to me, and he had his hand extended. I chuckled and said to Dr. Carson, "I think he wants to shake your hand." Sure enough, Dr. Carson extended his hand to Judah, and they shook hands. It was the most "big boy" thing I've ever seen Judah do. I was so proud of him!

Tomorrow, Judah will have his first opthamological follow up since his brain surgery. I imagine she'll dilate his eyes and check the optic nerves to see that the swelling has come down. She may also check his vision to see if the glasses have brought any improvement over the last several months.

Please pray for Judah as he is definitely showing major phobia of any medical staff and their instruments. My sister in law, Yvette, gave us some supplies from the hospital including a stethoscope so that the boys could play with them in hopes that Judah might grow more comfortable with the objects. Well, Tucker really is the only one who will have anything to do with the stethoscope. Judah seems to keep his distance when it is out, but we'll continue to try.

This morning, Lawrence and I had the privilege of seeing our 3rd baby moving all around in my womb. We have known for several weeks that I am expecting, but have only begun to let it out as we wanted to hear a hearbeat and see for ourselves how many babies were in there this time around. I'm a little over 10 weeks along, and the due date has been set for Feb. 4, 2007.

This was a bit of a surprise for us, but we are delighted. Once I found out I was pregnant and began paying a little more attention to making sure I was eating/drinking/resting, I started to feel better physically. For a while I was growing incredibly weak, lightheaded, and nauseous, not having a clue as to why.

You can pray for me for continued strength and grace to care for the boys in a way that would honor God. Lawrence continues to have a lot on his plate at work and is not home like we'd like him to be. Hopefully, I'll come to the end of the first trimester and feel like a new woman. That's what all the moms who have one baby tell me happens as I did not experience such a boost of energy in my pregnancy with the boys for obvious reasons.

Here's a little ticker that I'll try to post occasionally for you to follow along our countdown to Almengor baby # 3. (And, yes, if we can find out the gender, we will and will tell you, too.)

Lilypie Expecting a baby Ticker

Wednesday, July 05, 2006

This Week's Follow-up

Hope everyone enjoyed their fourth of July. We attended a picnic our church hosted in the afternoon, took the boys out for icecream and spent the evening relaxing as a family. We opted out of going to see fireworks this year as it would have been much past the boys' bedtime, and I thought it might frighten them a little still this year. Maybe next year!!

This week, Judah will have his follow up appointment with Dr. Carson. I'm not sure if it'll be Dr. Carson himself who looks at him or his P.A., Anne, who is great, too. Either way, Judah's incisions look like they're healing well, to me anyway. The one on top of his head has some gauze or something sticking out of it. It's not very noticeable; it's just a little odd as I'm wondering if the skin closed over it and part of it is sticking out of his head on top. So, I'm definitely asking about that. Also, I'm hoping to find out how often we'll be needing to have Judah receive CT scans and other follow up procedures to make sure the shunt is functioning properly.

I'm going to try taking both of the boys with me to the appointment, hoping they'll get us in and out that way. You can pray that the boys will cooperate, that Tucker won't freak out about the elevators and Judah won't freak out when he sees the "white coats". :)

You can also take another opportunity to thank God with us for the amazing means of grace that Hopkins and all of its doctors have been to us. Thank God especially for Dr. Carson and his team who so skillfully performed brain surgery on my son. Take a second and pray for Dr. Carson. He is a Christian, and God has used him to bring healing to so many. Pray that God would continue to guide his skillful hands and bring healing to many others through his hands.