Healing up

Lucas is recovering well from his surgery and all that has befallen him since. - He ended up with a urinary tract infection (UTI) and a fever of 102. We then had to switch his antibiotic to a more heavy duty one from the prophylactic one originally prescribed. The antibiotic gave him some fierce diarrhea which made his tush pretty raw. Then he had a reaction to the antibiotic and broke out in a rash. We switched to yet another antibiotic and the rash cleared within a day. He also ended up with a stuffy nose. In the midst of all this, actually before the UTI, he began cutting his 1st tooth!

When we took him in last Wednesday to have his catheter removed, there was a fistula (opening that shouldn't be there) along the suture line, so Dr. Austin decided to put in another catheter for another week and give the incision a bit more time to heal. The new catheter caused a lot more bladder irritation and resulted in frequent bladder spasms which caused a lot of discomfort for my sweet boy. (At one point we were giving him his seizure meds, antibiotics, pain meds and bladder spasm meds, all at specific intervals and several with required spacing between doses of other drugs to avoid drug interactions. It was like I was working in a hospital.)

He is now feeling much better. The UTI is all cleared up, the 2nd catheter was removed yesterday and he'll finish off the antibiotics tonight. We'll then be back down to just one med, except that Monday we'll give some Tylenol because he's having his third round of immunizations. (Will it ever end!?!) He still has his stuffy nose, but it is staying in his nose (I'm sure at least in part to do with his lung clearing screaming when I suck the snot out of his nose!) Through it all, though, as is the testimony of this amazing child, he has remained joyful, more clingy and more easily given to grumpiness, but still frequently bursting forth with joy and a grin that could light the tree in Rockefeller Center.

The fistula is still there, but it is minor. He will return for a quick-fix surgery in 6 months, one that takes about an hour compared to the four hours this one lasted. He looks pretty good "down there" compared to how he first looked when we brought him home. I don't think in a couple months anyone would know the difference (unless they saw some urine escape from his secondary hole!)

He's calling me now, so I'm off to snuggle him and get ready for dinner. Thank you all for your prayers; we know that God is listening and is acting on Lucas' behalf.

The internet has spoken

I found a geneology website that has facial recognition software that can do a couple of cool things. One of them is to figure out who your baby looks more like. Everybody always seems to think that Lucas looks a lot like me (Marc), but don't see much Esther in his face. I tend to think he looks a lot like both of us, and it seems that the internet would agree with me

Thankfully Home

After spending 11 hours at the hospital today, we finally returned home with the sweetest boy in the world. He was pretty knocked out by the dose of oxycodone he got before we left the hospital and slept until I had to get him out of his car seat.

We are super thankful that his surgery was a success and, prayerfully, his recovery will be smooth and as pain free as possible. As of now, he screams any time he is moved which complicates things a bit, but he is also, thankfully, quickly comforted in the arms of Mommy and Daddy. (We're so thankful for him!)

He will have his dressing in place for 3 days (which makes poopy diaper changes a bit messy) and his catheter in place for 2 weeks (which makes every diaper change pretty messy). Dr. Austin, his surgeon, said that the worst of the pain should subside within three days and we have Tylenol with codeine to help as well as a medication to stop the bladder from spasming due to irritation from the catheter. He will be pretty discolored for a while after the discomfort passes. Another example of Marc's thankfulness is that I don't get skeeved with such things and also that I don't mind doing all the diaper changes. :)

We are now thankful to be home and are hoping to catch up on some rest. We will celebrate a quiet holiday, keeping Lucas home and comfortable through the weekend. We are thankful that Marc's company is closed on Friday so we all get to be together for a long weekend.

Most of all, we are thankful that God loves us so much. He is true to His word that "He commands His angels to watch over us and guard us in all our ways". (Ps. 91) We know He was watching over Lucas today as we know He is everyday.

Thank you for your love and prayers. We pray that this weekend (and Every day for the rest of your lives) that you take stock of your life and thank God and one another for the precious gift of life and the many joys throughout it. :)

Blessings and Happy Thanksgiving!

"Under the knife" again

Just to inform/remind you all, Lucas is scheduled for surgery this Wednesday to correct his hypospadias. We don't have confirmation yet on the exact time, but we were told it'll be around 8am. It is an outpatient procedure and typically takes around 3 1/2 hours. He'll have a catheter for a couple weeks after to allow the created urethra to heal. Dr. Austin, the urologist, said that babies don't notice the catheter though; it doesn't cause them any discomfort. That's a relief to us. We hate to have him suffer anymore.

We'll reassure you all after the surgery that "all went well and Lucas is doing great", I'm sure. Thank you eternally for your prayers and love for this amazing little boy who doesn't like rice cereal and thinks it's funny to spit on his dad.

Oh and to update you all on another matter, Lucas was approved for vision therapy! He will have an assessment on December 6th and the amount/frequency of therapy will be determined based on the evaluation. (Thank you, God and thank you Dr. Lueder!)

Trying some real food

Lucas turned 6 months old last week, so we've started to try and feed him some rice cereal. He doesn't seem to like it yet, but feeding it to him is pretty funny.

Lucas' new laugh

Lucas has developed a new laugh. It doesn't sound much like a laugh, but he seems to do it whenever he's in a good mood.

Lucas in the bed

This was taken on November 5th, 2007

Lucas having some fun in bed:

Lucas and the election season

Every year around this time, Lucas gets all wrapped up in the election season. Unfortunately, there was nothing to vote for this year in Missouri (or so the lack of electioneering made us believe) - so Lucas took the time to reflect on politics of years past.... and suck on his fingers.

Lucas has been doing great. There haven't been any seizures since he's been at his full dose of Tegratol. He still really really REALLY hates his medicine, and will use his loudest scream possible when his medicine gets within view. We finally have an "official" neurologist - and we had our first appt with him last week. He said that once Lucas starts eating real food, we can give Lucas his medicine in a pill that we can mix up with the food. We plan to start feeding him soft foods next week (he will be 6 months this Wednesday!!), so hopefully Lucas takes a liking to food quickly and we can stop giving him this nasty liquid!

Besides that, the neurologist explained a few things to us about his brain that was in the MRI report that the Carter center did for us (the one that said that he doesn't have holoprosencephaly). Basically, Lucas' brain has not formed the way most brains do. When we're forming in our mother's womb - our brain divides into two lobes, and many of the structures within the brain divide symmetrically along the division of the lobe. In Lucas' brain - many of these structures didn't divide, and he is missing a part of the brain called the corpus callosom - which is the largest white matter section of the brain. We don't have any answers as to why these things might have happened, or what it will mean for Lucas. But we believe that Lucas is fantastic, and will continue to amaze us and his doctors.

Lucas has been getting a lot better with his head control, and seems to be starting to develop his laugh. Right now, it doesn't sound like much of a laugh - but it always makes daddy and mommy laugh :-)

Here are some recent pictures:

Lucas October / November

Getting back to himself

Lucas is now a few days into being up to his full dose of medication and is finally acting normal again. He was very grumpy and sleepy for the first 3 days, but today has been a bubbling well of joyful giggles (except for when he had to have "tummy time" and fussed until he was flipped back to his back). He pretty much hates the medicine, and complains every dose with sad fussing that makes me feel like I am evil forcing him to swallow it. He has had only one more seizure and it was the night before beginning his full dose (last Thursday evening) and it didn't time out at more than 5 minutes, so we didn't worry or have to call anyone or rush off anywhere. We are believing that now he will not have any more seizures. Ever. (Please, God.)

We are trying to get him enrolled with vision therapy, but we have to have a recommendation from his ophthalmologist, Dr. Lueder, to do so. His physical and occupational therapists work some with his tracking (and so do we), but a vision therapist specializes in such things and we think would be wonderfully beneficial. I don't know how long it will take for Dr. Lueder to get around to filling out the required paperwork. We'll let you know what happens with that.

Tomorrow, Lucas gets his second dose of testosterone to prep him for his hypospadias correction scheduled for November 21st. He tolerated the first dose pretty well and I managed to not cry or even vomit after giving it, though I felt a bit queasy for the first couple of minutes I comforted him while he cried. I'll be glad after I'm finished with it tomorrow and though I'm glad I know how to do such things, I don't think anyone really wants to do anything that causes pain to their child, even when it's for the best.

We meet with a different neurologist on Tuesday and will let you know how that goes. The two doctors assigned to Lucas' case at Children's are great, but if we need them, we only get them if they are on call. This other neurologist is at a different location, but if we need him, we can get him.

We'll keep you posted and try to get some more pictures and/or video up soon. He's the cutest boy in the world and I think everyone should be able to see so for themselves! :)

Home Again, Home Again, Jiggity Jog

Though we haven't been to market to buy a fat hog, we have been back to the hospital. This morning, as I was about to give Lucas his medicine, he had another seizure. It lasted over 5 minutes, so we called the EMS, as we'd been instructed to do. Pretty immediately after they arrived, the seizure stopped on it's own. It lasted about 10 minutes total. (Yes, EMS arrived that fast!)

About 40 minutes after it stopped (and maybe 15 after the paramedics left), he began seizing again. We happened to be on the phone with a neurologist when it began and she said if it lasted more than 10 minutes, call 911 again and come to the ER at Children's. It did, so we did.

He was behaving as his normal self, not at all "out of it". He even demanded to be fed in the ambulance. (During his seizure last week his disinterest in eating was my biggest clue something was really wrong.) He was laughing and chatting and wiggling and eating like normal. He was just also clenching his fist uncontrollably.

Part way through eating and about halfway to the hospital, the seizure stopped. We then had several hours in a small room in the ER in which Lucas endured 2 IV attempts and a heel stick for blood tests. He also had a CT scan. All results came back satisfactorily and we were released to go home with a Rx for a med to give if he should have another seizure lasting longer than 5 minutes.

It's not so good that he had 2 more seizures today, but it is good that they both stopped on their own and he wasn't at all "out of it". His schedule is a little thrown, understandably, but we are all relieved to be back home. :)

We follow up with his neurosurgeon, Dr. Leonard, this Thursday about the fluid build up btwn the brain and lining of the brain that they found on his last CT scan. Oh! He also had his shots last Monday and I gave him the first of his 2 prep shots of testosterone for his hypospadias surgery and he, no surprise, was a champ for it all. :)

Blessings to you all. We thrive on your prayers and love.
Esther, Marc and Lucas

Some new pictures

As promised by esther...

Lucas in October

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.

Doctors don't know very much

I just read an article on CNN called Five diagnoses that call for a second opinion, in which diagnosis number 3 is "Pregnancy termination for fetal abnormality". While Esther was pregnant with Lucas, we went through at least 5 ultrasounds and 1 fetal MRI. Besides Dr. Brondz (Esther's OB - who was fantastic), we spoke with 2 different doctors and a genetic counselor. These doctors stressed how devastating Lucas' diagnosis was and brought up the option to terminate. Esther and I made it clear that this was not something we were willing to consider.

We understand very clearly the serious nature of Lucas' diagnosis. But today, almost 9 months after learning what holoprosencephaly is, we are able to spend our days with a beautiful, happy, intelligent baby boy - and we love it so much. Lucas is doing so many things that the doctors said he would never be able to do, and besides having a shunt and a big head which he can't move around so well - you would never know anything was wrong with him.

While Esther was pregnant, we heard many similar stories from parents who were given horrible prenatal diagnoses only to find out that their babies were fine. I think this happens more than most people realize. And if anybody who reads this is faced with this situation, I ask that you remember Lucas and remember to put your faith in God before you decide that your doctor knows anything at all.

Some new pictures

Lucas has been doing great over the past few weeks. His brooklyn grandparents came to town, and they had a great time hanging out with the buddy. He's growing so fast. Esther weighed him yesterday - at 16lbs! He's not even 3 months old! He is definitely living up to his nickname of the master of chub.

Lucas : August 2007

Video: In the big chair

Today esther got to film the buddy hanging out in the big chair.

Lucas is a chatterBuddy

Lucas has been very chatty lately. Here's a clip from today

Still stumping them

Lucas had his first physical therapy appointment yesterday with Karey, who will be coming to our house every 2 weeks. His pediatrician wants him to receive physical therapy due to his diagnosis to make sure that his development stays on track. Lucas was in a great mood the whole time that Karey was over, and she said that Lucas is doing great. He's still behind in his head movement, but his eye tracking is emerging and Karey is very pleased with how he is doing.

Today, Lucas went into the eye doctor and had his pupils dilated so that they can check his optic nerve. His MRI showed that his optic nerve was small, but the eye doctor said that he wouldn't even have noticed the nerve being small if it wasn't in the report. He said that Lucas' eyes look good! Another relief!

Lucas continues to amaze us everyday. Here are some recent pics:

Lucas - early summer

Superhero?

Today we had an appointment with the geneticists at Children's Hospital. They said that Lucas' chromosomes are normal - which is great! They also had the official MRI report, which now states that his HPE is somewhere between semi-lobar (medium) and alobar (severe), which was news to us. We asked the geneticist to clarify with the radiologists.

The radiologist was glad that the doctor called to clarify - because apparently Lucas was the topic of discussion at the weekly conference of neuro radiologists today. They looked over his MRI scans and they've decided that they have no idea what Lucas' diagnosis is. They say that his brain has symptoms of all three severities of HPE, but he also has some brain matter that is not consistent with HPE that appears to be formed correctly and which they cannot identify. Nobody has ever seen a brain like his before.

We will be sending his MRI scans to HPE specialists at the Carter Center in Stanford University. Hopefully that will provide more information. Right now, our best guess is that he is a superhero. But please keep that under wraps. We don't want any super villains knocking on our door.

4th of July spectacular

Here's today's video clip of Lucas. Planning out next year's fireworks display in his head along with his trademark gruntings, smilings and dolphin calls.

His first MRI

Lucas was such a champ yesterday at the hospital! This boy continues to amaze us. He was sleepy and content in the car ride over, and started to get a bit fussy while we were waiting for the MRI to begin, but sucking on esther's finger seemed to satisfy him just fine. We held his hands as the anesthesiologist administered gas to put Lucas to sleep so that they wouldn't have to put the IV in his arm while he was awake. An hour later, we were at his bedside in the recovery room, and within 10 minutes he was awake enough for Esther to feed him (and boy was she ready to!)

Yesterday wasn't actually his first MRI, by the way. If I were a proper blogger, I'd have started this thing a long long time ago (that's what last August feels like today anyway - a long time ago) - back when I heard God tell me in the desert of Baja, Mexico that we would have a son and that we should name him Lucas.

Baja, Mexico

2 weeks later, Esther was pregnant (very unplanned) and our world was changed forever.

A lot has happened since then. A whole lot.

At our 20 week ultrasound, the doctor took concern with Lucas' brain development. After more ultrasounds and a fetal MRI, Lucas was diagnosed with holoprosencephaly - a rare brain disorder where the right and left lobes of the brain fail to correctly divide. We were given lectures about how horrible this diagnosis is, and spoke with many doctors who had no faith. Fortunately for us (and for Lucas) - we did have faith. A lot of faith. And we know that doctors get things wrong (at the same 20 week ultrasound, they told us that he was going to be a girl!), and weren't going to allow a diagnosis determine the future of our baby.


20 week ultrasound

When we first found out that we were pregnant, I began reading the Bible to the baby twice a week before we went to bed. Once we got this diagnosis, I began reading to the baby every night - and continued that throughout the pregnancy. With Esther reading to him in the morning, and with me reading to him in the night, we figure that we've read through the entire Bible with him while he was in utero.

As we got closer to 40 weeks, we found out that Lucas' head was very large - due to excess fluid in his head. We had taken a 10 week Bradley class that focused on natural, drug-free childbirth, but it was apparent from the size of his head that a natural birth wouldn't be possible. So we scheduled a C section for May 14th - 2 days after Esther's graduation from nursing school.


Graduation Day Pinning Ceremony - May 12th 2007

During the C section, the nurse (Tammy - who Esther did a preceptorship with a few weeks earlier) was cleaning up our baby and said "Didn't you tell me that you were having a girl? This here's a boy!" My heart leaped, knowing that it was Lucas - and that God's hand really was in this. I mean, we knew God was in this from the beginning, but now we really knew. Esther and I had never settled on a girl's name, but as we wheeled Esther and our new baby back into the room, we proudly announced to stunned family and friends that "his name is Lucas".

Lucas' head size was much larger than we expected at birth - because of the excess fluid, and so the day after his birth we were whisked away to the NICU at St Louis Children's hospital so that he could have a shunt surgically installed. Lucas spent a week at the NICU, and Esther and I slept in a room on the same floor as him during the entire time. The shunt has done it's job well, and Lucas's head has shrunk down about 2 inches, and his brain has expanded to it's normal size now that the pressure has been relieved in his head.

At Children's Hospital, Dr Leonard (his neurosurgeon) told us that he wasn't ready to say that Lucas had holoprosencephaly (HPE), because the fluid was preventing them from getting a clear picture of his brain. The MRI yesterday gave Dr Leonard a clear picture, and it was clear from those pictures that he does in fact have holoprosencephaly.

If you read about HPE on the web, you will see that it almost always comes along with facial deformities and asymetrical features. This is not the case with Lucas. Also, Lucas is not exhibiting any of the motor skill delays that are common with the disorder. He actually is advanced for his age in motor skills, and is coming along nicely in his head movement and vocalizations. So - we know that his brain is not normal, but we don't know what this means for his life, since each case of HPE is unique. We have no doubts that God has great plans for him, and that Lucas is a wonderful, precious gift and we couldn't ask for a better son. We have the highest hopes that Lucas will live a normal, joyful life, and we will continue to update you all on how he continues to wow the doctors.

MRI tomorrow

Hi there.

Tomorrow we bring Lucas into Children's Hospital for his MRI. They want to take a look at his brain to see how well the shunt is doing at relieving the pressure. Their hope is that with the pressure relief that the shunt has provided over the past 7 weeks, they will get a really clear picture of his brain to make sure that everything is fine. Esther and I are confident that he is fine, but Lucas does need to go under general anesthesia - which we're a little nervous about. We need to get him to the hospital at 6:30 am, and he can't eat anything after 3:30am, so it's bound to be a rough morning. For those of you who pray, please pray that Lucas would not have any complications with the anesthesia and that his eating schedule would work out so that he doesn't get to the hospital a screaming hungry boy.

Sorry we haven't posted any new videos in a while. I'll try to get one or two up this week.

Thanks

A few more pictures

Here are a few pictures of Lucas from the past 2 weeks

Lucas Weeks 5 and 6

Lucas gets his vitamins

Since esther is breastfeeding, we were told that we should give Lucas vitamins to make sure that he is getting enough vitamin D. So everyday we give him this stuff called Polyvisol. It smells horrible and tastes even worse. Just ask Lucas...

Lucas smiles on camera!

Today esther took Lucas into Children's Hospital so that they can check up on his shunt, so he had a bit of a rough day. The doctor's say that everything looks great though, so Lucas is very happy.

Here is the buddy in his swing - sleeping and smiling :

Lucas' First Video

Nothing too exciting, but still very cute

Lucas Pictures on the web

For those of you who are new to this, here are some links of Lucas photos on the web:

Lucas Daniel DeSantis : week one

Lucas : Week Two

Lucas : weeks 3 and 4