Sunday, November 8, 2009

The 'equipment' is piling up around here....standers, scooter boards, special seats, strollers, bath-chairs, braces (in addition to the more 'medical' stuff we already have O2, monitors, etc).
Lilah is definitely making progress with strength and sitting. Here is her new scooter board to try and encourage her to paddle with her arms or at least put weight on her arms to eventually get something/go somewhere. Not much forward progress, but at least Garrett is having fun with the demos.

she doesn't actually mind it, but she doesn't really give it a 100% either.:)
if her 2 favorite boys aren't's just not happening.

We are really good around here...not much blogging--just living. I feel like the tasks (especially appointments) have/are ramping up for the season of sickness that is upon us. I am so incredibly thankful that we have avoided major illness so far and am praying for continued protection for that little spongy heart and those weak lungs.

Speaking of heart....fantastic news from her cardiologist that both holes in L's heart continue to grow smaller and pose less of a threat to cardiac function. She actually said that the ASD (larger of the 2 holes, and the one we had planned on surgically closing, as a 'given') may not even need closure...ever! This is a totally unexpected gift of good news and if it weren't for all the other miracles surrounding Lilah's life, would make front page news around here. Her cardiomyopathy remains sobering, but we refuse to dwell on it.

She had a "swallow study" last week that confirmed she is still not safe to drink liquids. The combination of neurological delay and muscle weakness just don't allow her mouth/throat to recognize liquids and protect her airway. She continues to receive all nutrition via G-tube....something I do not anticipate to change. But, I would really love to see her enjoy a variety of food/drink as pleasure and social participation in meals. Right now she loves Cheetos, pizza crust, and puffs...but needs very close supervision.

She has a hearing test tomorrow (Tues), for which she has to be sedated for quite awhile. Please pray for this procedure, as sedation is always a bit more complicated for L than would be typical. We are not at all nervous that it will/will not turn out that she needs hearing aids....Paul and I have long ago adopted the game plan of moving forward with whatever she needs. She is not very vocal at all and we want to make sure she is receiving all the auditory input to which she is exposed.

Honestly, there are 'updates' on just about every specialist you can imagine, but I can only deal with some at a time:). Those will suffice for now.

I am constantly reminded of God's unwavering love for me, and my family, but especially Lilah. She is His first, He loves her perfectly, and not a hair falls from her head that He does not know. I am so thankful to be relieved of the burden of 'perfecting' her life or trying to 'fix' the broken. Don't get me wrong, there are days when the pressure feels strong, the work too much. But in my heart of hearts, I know the work has been done spiritually and her reward is in heaven. I rest knowing that Lilah will know perfection for eternity. The freedom of this knowledge is great....the ability to enjoy this remarkable girl.


Holly Priscilla said...

I continue to be amazed at both your and Lilah's strength!

Rachel 'The housewife' said...

I am amazed at how similar our lives are. As are our miracle babies! Time and time again, God has proven himself.
Appointments, equiptment, hearts, ears. Its just incredible. I will keep praying for healing for little Lilah, as I pray for my own little man. But I will also keep you in my prayers. Its an overwhelming job taking on the physical and emotional needs for our little ones.