Skull surgery date has been set

Liam will have craniosynostosis (skull) surgery on 10/9. This news shouldn't come as too much of a shock to anyone who has been keeping up with Liam using the blog, e-mail, phone, or whatever other method you're using these days (such as good ol' face-to-face conversation!). However, the timing has caught us off guard (much sooner than anticipated), so we're moving very quickly to get as much info out as soon as possible.

Liam will be in the hospital for a week (most of that will be in the PICU), then home for three additional weeks after. If there are no complications, Liam should be medically stable on discharge from the hospital and through the worst of his recovery when he comes home. At that point, he will not be able to be around lots of small (rowdy & germy) children, so he'll need to be at home laying around and eating bon-bons (just kidding on the bon-bons thing) as he completes his recovery.

The surgery sounds horrific, but do please keep in mind that many children have been through far worse surgeries during their short lives. Bear in mind that Lisa (who does not have an R.N. or M.D. degree, though she's feeling like she should have earned one by now) is about to translate a lot of medical jargon into "cornbread English," so something may get confused in the translation, but here goes: They will open Liam skull, move the front of the skull forward, and place a titanium plate over part of the opening with dissolvable screws. This re-opens his soft spot that fused in utero but actually should not have closed until he was 6 months old. Opening this area will allow his brain to grow, will bring his forehead forward, and will correct the eye socket problems he's been experiencing. Without the surgery, he would have life-long serious eye development problems and could potentially face further brain development problems. Over time, the skull bones will grow back together around the plate, fusing the soft spot. We anticipate a 3 month developmental delay with Liam following this surgery. He will need to have another helmet casted after this surgery and will be in the new helmet for a while following surgery to ensure proper healing and that his head continues to grow appropriately.

Bill and Lisa are actually doing ok—we’ve had 7 months to mentally prepare ourselves for this. The timing has caught us off-guard, in that we were tentatively planning this for early December, so here are some immediate prayer requests:

1. Praise and thanksgiving that God has provided such an excellent hospital and surgeon in our own backyard.
2. Praise and thanksgiving that we have the insurance needed to provide fantastic care for Liam.
3. Praise and thanksgiving that we have family, friends, and a church family who offer us support and prayers every day.
4. Praise and thanksgiving that we are facing SKULL surgery, not BRAIN surgery.
5. For Liam to have an easy surgery and recovery with no complications and as little pain as possible.
6. For God to guide the hands of the surgeon and his associates, the nurses, and the anesthesiologist during the surgery and recovery.
7. For Liam to extubate after surgery without a problem.
8. For God to continue to strengthen our family and help us "roll with the punches" (and thanksgiving that he is strengthening us to do that even as I write this!)
9. For God to give us patience to accept His timing in all matters surrounding our family at this time.

"I have set the Lord always before me. Because He is at my right hand, I will not be shaken." Psalm 16:8

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." John 9:1-3

In Christ,
Bill and Lisa

Big month for Liam!!

WOW! August proved to be a big month for Liam, as you can see from the pics above! He is sporting his birthday stickers on his helmet and showing off his new cup-holding skills. Yes, indeed, we are WEANING him from the TUBE!!!!!!!!!!!!!!!! It's a slow process, and right now we can only feed him either formula thickened with rice cereal from an open cup or baby food (which he's been able to eat for the past six months). However, we are so happy to see him drink from a cup!!

He turned one on August 9, and we discovered he does not like icing or cake, especially when it is on his face. Made for a rather boring first birthday party, but it was such a joy to see him turn one that we really didn't care about the cake-on-the-face thing.

Chris Rice, a favorite Christian recording artist, sings a song called "Life Means So Much." It's one of Lisa's favorites:

"Teach us to count the days
Teach us to make the days count
Lead us in better ways
That somehow our souls forgot
Life means so much"

May we always make Liam's days count!

In Christ,
Bill and Lisa

Great echo results!!

We are THRILLED to announce Liam's most recent echo results!! We met with Liam's cardiologist on July 23 but (once again) Lisa is slow about getting the word out. So, here you go:

1. The ASD (hole in his heart) appears to have closed on its own. We'll do a repeat echo in 9 months and they'll confirm this then.
2. The aortic root dilitation (area we feared was developing into an aneurysm) that was moderately enlarged in March appeared to only be mildly enlarged in this echo. So, no meds and no surgery needed yet.
3. The cardiologist said, "OK, so I'll give you a 50-50 chance that you're looking at one additional heart surgery before age 18."

WOOOOOOOOOOOOOHOOOOOOOOOOOOOOO! You have no idea what terrific news that is to two parents who started down this road in April 2007 looking at an HLHS diagnosis. ONE surgery? In the next 17 YEARS? 50-50 chance?

THANK YOU, GOD. So many prayers answered! And did you catch that we don't have to go back to the cardiologist for NINE MONTHS??!!??!!

"Who among the gods is like you, O Lord? Who is like you—majestic in holiness, awesome in glory, working wonders?" Exodus 15:11

So, we're still looking at a possible skull surgery this fall or winter. We take it one month at a time, and no, I don't have any idea when we'll get the final word. All the docs involved with Liam's care defer to the skull doc for his opinion on this issue, so we have decided to do the same.

Most recently, the ophthamologist saw Liam last week and determined he has a problem with his right eye. I can't pronounce it nor can I spell it, so I won't even try. It doesn't really matter. What does matter is that he will probably need a minor outpatient eye surgery at some point down the road (after the skull surgery, if and when he has that). For now, he has a lazy right eye and we're going to patch the left one for 4 hours per day to see if we can strengthen the right eye.

A patch and a helmet. We're considering having a pirate's hat affixed to the top of the helmet to give him the look of a pirate. What do you think?

Liam turns one on Saturday. We're considering the words from his cardiologist to be God's early birthday gift to Liam.

We bid a very sad farewell to Bill's mother on July 18. Thank you so much to those of you who have surrounded our family with your prayers, flowers, memorial gifts, cards, and love since she became ill earlier this year. To say she will be missed is such an understatement.

In Christ,
Bill and Lisa