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! :)
Tuesday, October 30, 2007
Sunday, October 21, 2007
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
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
Sunday, October 14, 2007
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!
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!
Friday, October 12, 2007
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.
Thursday, October 11, 2007
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
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!
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!
Subscribe to:
Posts (Atom)