Lucas is a champion

So, we're home from the hospital and words can't express how glad we are to be back. Dorothy had it right when she said there's no place like it. They have sent us home with a Rx for Tegretol, an anti-seizure medication. We are awaiting the call from Walgreens that it is ready for us to pick it up. Please pray with us that he does not suffer any damaging possible side effects such as liver damage/failure, bone marrow damage, or a rash. We'll be monitoring for signs and he will have regular blood work as well.

Here's the brief:
Lucas had what is called a focal or partial seizure affecting only a part of his body (vs. a generalized seizure affecting everything). His right hand and right foot were the involved appendages. They stopped his seizure in the ER at Children's hospital with medication after the seizure had lasted about 1 1/2 hours. (In the seizure world, 20 minutes is considered long and dangerous, but there are no signs that Lucas suffered any damage.)

He had an EEG (monitors brain activity) Friday, and they said that he was not actively seizing during the test. (There was a concern that he might be having multiple "subclinical" seizures that would be too small for us to notice just by watching his behavior, but now that has basically been entirely ruled out.) It also found some "abnormal delays" in parts of his brain. These were scattered on both the L and R sides. They also did a CT scan and found that there is an area where fluid is building up between the brain matter and the skull which shouldn't be there. They adjusted the flow rate on his shunt and we will follow up in a couple of weeks to make sure that fluid is moving back into the space where it is supposed to be. His CT also showed that his brain is continuing to expand, and That is a good thing!

Lucas is back to his normal, joyful, snuggly, chatty self again and has been since the Ativan they gave him to stop the seizure wore off. Whenever these situations come up, it amazes us that God continues to use this precious child to touch the lives of others with joy and peace. We also continue to meet other families who are seeing their little ones through tough times as well. This visit, our "roommate" was a little girl named Veronica who also has had hydrocephalus since the womb and she and her family appreciate your prayers as well.

We now have to reschedule his regular check up and shots for this week. He'll also get his first of 2 testosterone shots this week to prep him for his hypospadious surgery next month. We have some more pictures of Lucas to share with you, including a couple taken with the EEG leads all over his head. :) He just woke from a nap now so we'll get the pictures up later.

Thanks for all your love and prayers. Our faith has remained steady, but it is always nice to be encouraged by others too!

Lucas is doing great

I spoke to Esther this morning, and she said that Lucas had a great night. The doctors say that he should be coming home today. More details later.

Lucas needs your prayers

Today Lucas had a seizure. It's never happened before, so we didn't really know what to do. After calling our pediatrician, Esther raced off to Children's Hospital and I left work to meet her there. When I got to the hospital, his seizure was still going on - but stopped soon after the doctor's gave him medicine. They say that it was a partial seizure - because it was only his hand and foot that were twitching and Lucas was awake through it and alert through most of it, but they're still not sure why it happened. As of this evening, Lucas is back to his normal joyful self, but the doctors decided to admit him for observation. From what we heard, if he does well overnight then he can come home tomorrow. Esther is staying overnight with him at the hospital, so please pray that they will both get good rest and that everything will go really well so that they can come home tomorrow.

Thanks,
Marc

Abigail= Joy of the Father

Some of you may remember us telling you about a little girl whose room was down the hall from Lucas' at Children's Hospital. She was born May1st and almost immediately after she was born, they found a super-aggressive tumor in her brain. When we met her and some of her family, they were getting ready to return home on hospice care. They were told there was no hope and they should cherish the little time they had left with their beautiful daughter Abigail Grace.

I think we felt somewhat of a special bond with them because of our shared faith in God and also because Michael, Abby's dad, had been told by God that they were having a little girl and that they were to name her Abigail, similar to how God told Marc about Lucas.

I (Esther) got to spend a little time with Abby and her mom Rachel (who happens to also be a nurse). Abby's grandpa Barry also came in and spent some time with us in prayer in Lucas' room. We were strongly impressed by them (not in a showy way, but in a way that burned in our hearts) and we have not let them drift from our prayers but have maintained belief in a miraculous recovery for little Abigail even though all medicine and logic seemed opposed.

Two days ago I finally got around to e-mailing Barry to see how the family and little Abigail are doing. His wife Chris wrote me back with the news that not only is Abigail still alive, but she is well! She has had some rough times, but God has not forgotten her and I am certain He never will.

We have seen amazing faithfulness and miracle after miracle with Lucas and we know that God created him for awesome purposes, as He did each one of us. Sometimes we question "why is this happening to me, to my child!?!" but overall, we are not bitter. We are not sad. We are thankful and joyful and honored to be trusted with the most amazing boy in the world (our very strong opinion).

I want to encourage you all to read through the journal entries on Abigail's website from the beginning. There is a lot there, but it's good stuff and well worth the time. Please as you pray for Lucas, remember Abigail and so many other children and their families who are out there facing things they never imagined they'd have to face.

Also, an update about Lucas' fluid build up: I took him to the Neurosurgery office a few weeks ago, the same day we got the report about his MRI results. They said that it seems that the shunt is still functioning properly, but is sometimes being overridden and extra fluid is leaking around the tiny opening that there is in the shunt. They didn't do any scans so as to not expose Lucas to radiation unnecessarily and said to keep an eye on it. There is still some build up around his collar bone that doesn't go away which suggests a possible fracture in the tubing, but it isn't severe and it could be nothing so we're just watching it.

I'm taking him in for his second round of immunizations today. His first round was pretty rough on him. He maintained a borderline high fever (not super high, just high, but high isn't good for him either). Generally, subsequent reactions are more severe than the initial reaction, so please keep him in your prayers today. We'll pre-medicate with Tylenol to cut the edge a little. :)

We'll get more pictures up soon too! Blessings!

Lucas and the fishes (Part 1 of 5)

Lucas loves hanging out with the fishes in his crib. If he's (mildly) grumpy, we can sit him down in his crib and turn on his mobile - and he starts smiling. Here are some pictures from this week

Lucas in September

An interesting turn of events

Last month we sent Lucas' MRI over to the Carter Centers, which are a group of hospitals that specialize in holoprosencephaly. Since the neuroradiologists at St Louis Children's hospital could not determine what type of holoprosencephaly Lucas has, we figured that the Carter Centers evaluation would help us know a bit more about Lucas' brain. The summary of their report was:

In reviewing your child’s MRI, we did not see any areas that are abnormally connected across the middle; therefore your child does not meet the criteria for the diagnosis of holoprosencephaly.

So Lucas doesn't have holoprosencephaly at all!

The report did mention other brain disorders, but it wasn't clear whether they were diagnoses or just possible diagnoses. So the next step would be to go to a neurologist who would be able to help us translate the report into English.

Regardless of what the doctors say, Lucas continues to be awesome. He is behind in his eye tracking and his head movement, but everything else seems to be great!

Some new pictures

Lucas - late summer

Lucas is doing great. Esther's a little concerned that some fluid has been building up along Lucas's shunt line, but hopefully it's nothing to be concerned with. If it continues to happen, then we'll have to bring him back to Dr Leonard.

Esther and Lucas went to the urologist last week, so that the doctor can plan for the hypospadias correction surgery. It will most likely be in November, and will be outpatient - so Lucas won't have to spend the night in the hospital. We found out that he'll need to have a catheter for about two weeks after the surgery, which doesn't sound like any fun - but they say that babies hardly notice it. Maybe not, but I'm sure I will...

Lucas is starting occupational therapy this week. The therapist will work with his head movement and his eye tracking, which is pretty much the same things that the physical therapist does. I'm still kind of confused about the difference between the two, but Lucas is in a state subsidized early intervention program called First Steps, so we pay the same amount no matter how much therapy he gets. And hopefully more therapy now will pay off big later.